WHY NOT ME?

by
Anna Healey
Cover design by Phil Campbell Front cover photograph by David Johns
MACMILIAN
Pan Macmillan Australia
NON-FICTION/AUTOBIOGRAPHY
www pan macmillan com.au
SOCIETY
Seeking the Cure. Providing the Care A percentage of the proceeds from
the sale of this book will go to the MS Society.
AUST.

RRP $30.00 me GST ISBN 0-7329-1126-5 d co

WHY NOT ME?

Anna Healey MY JOURNEY WITH MS

ANNA HEALEY

with Krista Bell MACMILLAN Pan Macmillan Australia Lovingly dedicated

to:
Paul, my rock, for standing by me, holding on, and loving me through
the good and bad times;
Prue, for reminding me that life is always worth living;
Mum and Dad, for starting me out on this journey and for giving me the
courage to carry on.
First published 2002 in Macmillan by Pan Macmillan Australia Pty Ltd St
Martins Tower, 31 Market Street, Sydney Copyright Anna Healey 2002 All
rights reserved No part of this publication may be reproduced, stored
in a retrieval system, or transmitted in any form or by any means,
electronic, mechanical, photocopying, recording or otherwise, without
prior permission in writing from the Publisher National Library of
Australia Catalogue mg-in- Publication data Healey, Anna Why not me'
ISBN 07329 11265
1. Healey, Anna. 2. Multiple sclerosis - Biography I Bell, Krista II
Title 6168340092 Set in 13/16 5 pt Bembo by Midland Typesetters Printed
in Australia by McPherson's Printing Group

Contents
Acknowledgments ix
Prologue xi
1 the sky's the limit I
2 A little fish in a big pond 2 I
3 having my wings clipped 35
4 and the camellias bloomed 57
5 united we stand 77
6 A little ray of sunshine 97
7 living with a loaded gun 115
8 getting on with the game 131
9 A new set of wings 155
10 polar bear 176
11 flying high 197
12 enjoying the journey 220
Multiple Sclerosis Society Contacts 237

Acknowledgments
To all the people -- family and friends -- who have supported me over
the past ten years, a big thank you for the phone calls, the visits and
the enthusiasm for my crazy lifestyle. To those who deliver yellow
flowers on my blue days, a big hug.
But in particular to Beth McMahon and Kim Ness, who typed the original
manuscript from my illegible notes, a special smile because they
performed this chore when this book was just a vision.
A big kiss to Krista Bell, who was always enthusiastic and willing to
talk me through writing the next paragraph. Late night phone calls
were never a problem.
An energetic handshake to my mate at the MS Society, Peter Bland, an
adventurer of awesome (Antarctic) proportions. A man who loves to see
a win--win situation for all and who dared to help me get my story
published.

A big smile and wave to my friend on the shore, my coach IX and

mentor, Colin Lampshire, for being one of the best people I have ever
known -- nothing is too difficult and there is always enough breeze to
go sailing.
A gentle hug for Paul's mother Heather, who is always available to lend
a hand, babysit and generally roll up her sleeves and help out when
things get out of control.
To my sisters, a warm Healey huggle (a kiss, a hug and a cuddle rolled
into one) for over the years keeping the sun shining despite some very
bleak times.
And finally to Mum, Dad, Paul and Prue, the people I dedicate this book
to -- without them this story would never have been told.
Prologue I never had any intention of writing my story down. It was
just a series of events that forced me into committing my life to
paper.
It all started with an invitation to lunch. The MS Society of Victoria
was having a fundraiser at Maxim's restaurant, in the up market
Melbourne suburb of Toorak. It was a book launch for an English writer
who had MS and was in Australia to promote her book and speak at the MS
conference later that year. One of my friends from the society, Jo
Fairhairn, asked me to join her and some friends for the lunch. I had
heard that Maxim's had a pretty fabulous chocolate souffle on the menu,
so I got dressed up in my glad rags and went along.
I made my grand entrance to the afternoon's occasion via the kitchen -past the pantry and the chefs at work, moving through to the rhythmic
sound of the dishwashers -- to finally arrive in the grand dining room.
It was a pleasant afternoon of great food and conversation.
Eventually, when the formal

XI '
part of the day was over, someone turned to me and said, "Anna, you
should write your story down and get it published."
I laughed and replied, "It's not over yet, and who's got the time?" I
was working, being a mum and a wife, presenting as a speaker for the MS
Society and training for the 2000 Paralympics. I didn't need to put
any more in my life. There was a buzz around the table, which
eventually settled down. Then, just quietly, the woman on my left
leaned over to me and said, "You might not have the time, but I may."
I didn't really know Krista Bell, but Jo had introduced her to me as a
children's book author and critic. So I brushed her suggestion off
with a laugh, not believing it would eventuate into anything. The
truth was I didn't yet know who I was dealing with.
Krista rang me at home and started to make sense out of the idea. She
was enthusiastic and full of suggestions about my story, truly
believing it was a tale worth telling. We met and exchanged histories,
and I started to open up about the events that had shaped the person I
am now. After many afternoons of taped conversations, Krista had a
chapter complete and in no time a friend of hers from the publishing
world had read it. The response was both good and bad: they liked the
story but felt the telling of it lacked honesty.
The reason was suddenly obvious. Even though I was relaxed throughout
the interviews, no matter how hard I tried I couldn't tell Krista the
absolute truth. As usual I would always gloss over the ugly bits to
protect my listener, and this was terribly obvious in the completed
chapter. Krista told me that if I was going to do this, I had to do it
on my own. She would be there to help, to hold my hand and make sense
of Prologue the jumbled notes at the end, but the initial story had to
come from the heart -- a totally honest, solo performance.
Well, I don't consider myself much of a reader let alone a writer, but
I sure can talk. I started at the beginning and wrote down everything
I could remember from the years gone by. Finding the time was
difficult: after dinner, when the chores were done; during my daughter
Prue's swimming lessons at the local pool; sitting on the beach when
there was no breeze, waiting for the wind to blow up; in the car.
Anytime I had a few seconds spare, I wrote segments down.
Some bits were very difficult to put on paper. When things are said
out loud, they are there for just an instant, a flash. When printed on
the page they are etched in ink for all time. There was no turning
back. It took me a long time to find enough courage to write about
being diagnosed with MS -- it is not a memory that I have spent a lot
of time reflecting on. I admit I even had a few drinks one evening
before putting pen to paper about that moment in time. Sometimes I
laughed out loud; other times my vision would blur with tears as I
wrote my memories down.
I didn't do this as a cleansing experience: I just like to set myself
goals. Many people say that they would like to write their story down,
but they never get a chance. My life has taught me to never let a
chance go by, to not waste a moment. Now my story will always be there
for Prue to read, so she has some insight into what made her mother the

way she is.

I am glad that people will have an opportunity to read
I feel that accounts about real people make us believe
impossible is possible. If I had had a positive story
MS, maybe that initial struggle would not have been so

my story because
that the
to read about
lonely.

My husband Paul always says no one will want to read about us, we
couldn't possibly be that interesting. But I always argue that the
only reason our life is relatively 'normal' is because we work damned
hard at it, surviving the battles and somehow staying together. We
live this crazy life from one day to the next, not focussing on what we
had to do to make it this far, not noticing that I'm in a wheelchair,
not thinking or planning too far ahead, not worrying about what we own
but working on who we are. We just keep on trying to enjoy the
journey, from one moment to the next.
XIV
CHAPTER 1
The Sky's the Limit I am lying on the cold tiles of the bathroom floor,
frustrated and upset. There is nobody home to help me get back into my
chair, no one to hear me cry out.
I was transferring myself from the shower stool back into my
wheelchair. I do this every morning, but today I slipped. I hate
this, I hate it, I hate it. My leg is throbbing with pain; it will be
black and blue with bruises tomorrow. Both legs are in spasm and
pointing out straight in front of me, and the pain is shooting up from
my feet into my back. I lie down looking for a moment of relief but it
doesn't come. Damn -- I can hear the wind chimes on the back porch,
tinkling in a sudden breeze. I'm going sailing later, I haven't got
time for this.
Dragging myself over to the bathroom stool, I try to get up onto it to
struggle back into my chair. I have scraped the skin off my heel and
am leaving a trail of blood. Terrific, that will take ages to heal. I

should be at a school assembly soon, listening to my daughter read a

poem. First attempt to lift my butt up onto the stool, the stool slips
on the tiles and slides out from under me. The second attempt doesn't
happen, I wasn't positioned properly. Third attempt and this time up
onto the stool -- concentrate hard, use all your upper body strength,
breathe deeply and lift.
Finally I am sitting back in my wheelchair, naked, bleeding and worn
out. It has taken me an hour to have a shower and I am exhausted.
What a way to start the day.
Sometimes the sheer frustration of living like this is enough to make
me scream. No one can really understand what it is like to live in a
wheelchair until they have to do it, day in and day out, for an
eternity. Well, that's how it sometimes feels: like I have been
confined to this twisted piece of metal forever. Those are the days
when I say to myself, Why me? Life was not supposed to be like this.
It didn't start out like this.
I was born on 17 October 1963 and made my presence felt right from that
moment. Jane, my older sister by two and a half years, skipped around
announcing she had a baby sister, Ann (without an 'e') Maria Healey.
When I was older it seemed to me more logical to be either Mary Anne or
Anna Maria. But then, my parents may have named me Ann but they've
always called me Anna.
My birth weight was average, but I was short, only 17 inches long (48
centimetres). I've been short ever since. My sister Jane was fair
skinned, with dark hair and an English rose complexion. I remember
from when I was tiny that everyone commented on how angelic she looked,
but I was just the opposite: a shock of blonde hair, olive complexion
and green eyes, with all the bravado that a little person could muster.
I was the performer, the charmer; the one who smiled, laughed and
talked to anyone who would listen. I'm sure I talked even if no one
listened!
I don't think my mum had time to burn her bra in the sixties, even if
she had wanted to -- she was too busy looking after us. But my mother
wouldn't do such a wasteful thing unless there was a good reason. Mum
has a saying that she seems to live by: "If you have but two pennies,
spend one on bread for the body and one on a lily for the soul. "That
the way my mum looks at the world: things should of course be
practical, but whenever possible they should also be good for the
spirit.
She always dressed Jane and me to look like perfect dolls. My
grandparents had both been in the rag trade, Papa as a tailor and
Grandma as a seamstress, so Mum had clothes made for us that were
totally amazing. We had matching outfits, gloves, hats, shoes and
always a petticoat made specially for each dress. The two of us looked
like bookends, one dark headed, one light, and pretty as a picture.
Four and a half years later, when I had set myself into a very nice
routine at kindergarten where I'd been sent because I was bored at
home, my sister Elizabeth arrived. I had my nose seriously out of
joint about this - I'd had baby rights for quite a long time and I
wasn't interested in giving them over to a new member of the family.

Soon after Elizabeth was born, Mum became ill. Physically exhausted
and with an infection that she just couldn't kick, she lost a huge
amount of weight and it took months for her to recover. So for a while

my dad took over the parenting role of our family. He worked

full-time as a salesman and then came home to roll up his sleeves and
help out with the chores. We ate burnt lamb chops and wore pink-tinged
singlets instead of white, but that's the type of person my dad is:
small in stature but big-hearted. A hands-on sort of man, he would
much prefer to do something than talk about it. He grew up in a large,
extended Irish family, where everyone shared the good times as well as
the bad and learned that families stand by each other no matter what.
Dad practically raised Libby on his own, and consequently she was and
still is an independent person, because as a child she could do as she
wanted without upsetting the household. I remember once, when she was
just a little girl, we couldn't find her. We looked in the garden, all
around the house, checked with the neighbours. No Libby. Then Mum
found her asleep in bed. I don't think my parents had experienced such
a self-reliant child before: Jane was delicate, and I was volatile, so
bedtime must have been a serious drama every night. Yet there was
little Libby, putting herself to bed without a fuss!
Then, much to everyone's surprise, particularly Mum's, she was pregnant
again. When Libby was only eighteen months old, a fourth Healey girl
was born, baby Emma. I was at school by this time so I don't think
Emma's arrival had the same life-threatening impact on me that Libby's
had. From the beginning, Emma had a spirit all of her own. She is
blonde like me but fair skinned, and she has what I'd describe as a
pure spirit.
The Healeys were complete, Denise and Ted with their four daughters.
We were and still are a close-knit family. Typical was our family
ritual on a Sunday morning, which consisted of us all getting into bed
with Mum and Dad, telling stories, making silly noises and sharing
jokes. It was the beginning of the day's activities, including going
to church and later eating the Sunday roast. It sounds so perfect, so
old-fashioned and secure, but that was how my sisters and I grew up.
I think I was definitely the most demanding out of the four of us. I
threw tantrums when I didn't get my own way. I have an aunty who we
call Bunny, because everyone in Dad's family has a nickname, and she
still tells the story of me throwing myself on the ground, lurching and
screaming, when she inadvertently put tomato sauce on a pas tie for my
lunch one day. Obviously I didn't want sauce. A well-behaved child?
I think not. I was absolutely headstrong, but I also gave my parents
lots of laughs: from one extreme to the other!
At home we had an above-ground swimming pool brought by Santa one year.
Apparently Dad tried to put it up in the backyard on Christmas Eve but
it was a really stormy night, and each time he lined up a piece of the
metal siding the wind blew it down. I didn't know any of this, of
course, and in fact during the wee hours of the night, Mum vacuumed the
carpet in case any of us woke to hear Dad scrabbling around outside!
We girls got up in the morning to find the pool partly erected and two
bleary-eyed parents wearing Santa hats.
The arrival of the pool was the beginning of my preoccupation with
water. Each summer when Dad scrubbed the pool down and filled it with
fresh water, I'd have my bathers on by the time he'd put a couple of
centimetres of water in and would jump in before it reached halfway.

I'm still a water baby, swimming laps several times a week all year
round at my local indoor swimming pool. From dawn till dusk, as they

say, my sisters and I would be in that backyard Why Not Me?

pool, playing games about mermaids and seahorses, making whirlpools and
swimming back and forth. I was always the last one to get out, with
just one more swim' being my catch cry In summer my hair would be
bleached white and my skin tanned chocolate brown. At the end of each
day we would all go to bed exhausted, with a BBQ dinner in our tummies,
ready to do it all over again the following day. Summer holidays -- I
loved them.
In winter there were many Saturday or Sunday afternoons when Dad would
take Jane and me, and later all four of us, down to Port Melbourne to
look at the ships that had docked during the week. It was a long drive
from where we lived in Templestowe, but there was something about the
water that beckoned us, especially me. My dad's father had loved the
wharves and had taken Dad down to the docks when he was little. My
dad, Teddy, had been a Sea Scout and worked on fishing boats as a lad,
so he has always had an affiliation with the sea. He was even born
under the fish sign in the zodiac, Pisces.
In the afternoons Dad would stand on the pier with us, his girls, and
describe the ships: what they had brought to Melbourne, where they had
come from, maybe where they were going. Dad knew all the flags and he
would talk about their significance. He never got bored looking at
boats, but us kids would soon be stir-crazy and mainly interested in
convincing him to buy us an ice-cream on the way home. I suppose it
was just good time-out for Dad, and the smell of the sea always seemed
to make him happy. It must also have had a powerful and positive
subconscious effect on me, which would surface much later in my adult
life when I was desperately searching for purpose and direction.
This connection with the sea goes even further back in Dad's family.
His ancestors were Irish and had come to Australia generations ago as
whalers, sailing across the sea in search of a new life and a place to
call home. Hanging on the wall in Mum and Dad's lounge room is a brass
foghorn from one of the sailing ships that brought those voyagers to
Australia to hunt whales. The Healey clan eventually abandoned the sea
to go inland and take part in the mid-nineteenth century gold rush in
central Victoria, but I think that strong link to the sea was something
I inherited and that later in my life would prove to be a major
positive factor in shaping my future.
From the moment I was born I was the actress of the family, forever
putting on a show. Whenever there were two sheets on the Hills hoist
clothesline in our backyard, I saw it as an opportunity to perform: the
sheets became the curtains for my stage and my audience would sit on
the garden furniture to watch me -- totally enthralled, I imagined! My
sisters and the neighbours' children would be directed by me into
having the minor roles: animals, plants, princes if they were really
lucky, or logs in a scene set in the woods if they were out of favour
with the bossy little director. Of course I would have the best
costume, and inevitably I would be the fairy princess. Back then, ego
was not in short supply.
At primary school, the last thing on my mind was reading, writing and
arithmetic. I wanted to have a good time, make friends and be a part
of everything. Luckily the academic side OF school was not too

difficult for me --just finding the time to do it was the problem. I

was a very social child and the importance of playtime far outweighed

the curriculum. I wasn't particularly good at mathematics and it also

took me a long time to become interested in reading, but everything
else was easy. It wasn't until I was in about grade four or five, when
my cousin Sue gave me her copies of the Anne of Green Gables series,
that I found any interest in reading, because I fancied myself as the
heroine.
I discovered very early that I was lousy at sport, because I was so
much smaller than my peers. I wasn't good at competition sport so
managed to totally avoid that social aspect of school and accepted the
fact that sport would not play a part in my life. How wrong that would
eventually prove to be. But I was a good singer and found that by
being in the primary school Sunday choir I could be part of a different
sort of team. I also realised that performing in front of an audience
gave me the satisfaction that I had failed to achieve on the playing
field.
While at primary school I made some lifelong friends: Penny, Virginia
and Anne-Marie. Penelope Pitstop (we nicknamed her after the cartoon
character) was small in stature, a gymnast and a practical joker.
Virginia was the serious student and a ballet dancer, and she had older
brothers and sisters to keep her up with what was and wasn't cool.
Anne-Marie was an airhead, bright but easily distracted, her head in
the clouds. Annie's pigtails were always uneven and she never had a
hanky. As a group we were inseparable and we shared all those very
important details of our lives and wondered about the years ahead in
high school. In grade six we developed a healthy interest in boys,
mainly demonstrated through the game of kiss-or-kick chasey (whichever
was more appropriate, depending entirely on who it was you caught!).
Primary school finished, and three out of the four of our gang went on
to Catholic Ladies College, situated in the north-eastern suburbs of
Melbourne. I was devastated to leave Penny; she had been my best
friend but it was time to open a new chapter in my life. An all-girls
high school meant no distraction by boys and the expectation of good
academic results. This was somewhat forbidding for me as my top
priority was my social life!
My parents always worked hard towards giving my sisters and me the best
education they could afford, choosing Catholic schools, both primary
and secondary. I know at times it was financially difficult for them
to keep up with expenses, what with books, uniforms, school fees and
transport to and from school, but somehow they always managed to do it.
Mum and Dad believed that a good education was the greatest
achievement of all. Neither of my parents have degrees; in fact,
neither of them went to senior secondary school, so it was their goal
that all four of their daughters receive the best possible education.

we graduated, because it gave each of us financial independence and

the potential to be responsible for ourselves. I liked that aspect
too.
At high school I never felt very bright, but it was only years later
that I realised that it wasn't that I was stupid, it was just that all
the girls I hung around with were super intelligent and destined for
high-flying careers. They weren't nerds either, but rather they were
the 'in' crowd.
I made a new friend to fill Penny's place and that was Giuliana. I
remember standing in the corridor at school making a pact with her to
become best friends, one of the most important factors in surviving an
all-girls high school, and from that day we were fully informed of each
other's innermost secrets. She is still one of my dearest and closest
friends, and years later I would come to rely heavily on her when my
life was turned upside down.
At school we had a strict uniform code. We were often checked to make
sure our skirts weren't too short or long and that we were wearing
slips under our summer uniform, and if we were caught without our hats
and blazers on the way to school then life just wasn't worth living.
There were nuns teaching at our school then and we still did subjects
like Latin, needlepoint and dressmaking, as well as the usual
geography, maths, English, history and art. Who would have thought we
were in the midst of the 1970s Summer of Love!
During my teens I was very argumentative: I wanted to go out, to do my
own thing, and I demanded my own different set of rules. I argued with
my parents a lot about religion. Even though I was at a Catholic
school, in religious studies we were taught to question and argue
points of fact, which caused my parents quite a lot of anguish. It was
even more 10 difficult because my older sister had not been so
rebellious or made such distressing demands of my parents.
I had a job working at a dry cleaner on the weekends, which in a small
way gave me financial independence. I could make decisions about how I
dressed, the music I listened to and places I went, limited of course
by Mum or Dad being able to pick me up.
"Please, please, please, pretty please' was probably the most commonly
uttered phrase at that time in my life. Not much had changed since I
was a little girl - I was headstrong and insisted on getting my own
way.
Around year nine or ten, the group of girls I went to school with
started attending a local disco, an under-age dance held in a local
basketball stadium on Saturday nights. The whole school week was spent
in anticipation of the Sheehans Road dance. What would I wear? Who
would I meet? Would that first kiss finally happen? Schoolwork was
definitely on the back burner and our school diaries were used
primarily to communicate between one desk and another as we passed
notes, drew pictures of outfits, and wrote "AH loves . . ." (whoever
it was I fancied that week).
Then it finally happened: my first kiss was delivered at the Sheehans
Road disco. After all that anticipation and lengthy lunchtime

conversations, the ultimate moment for girls in our year had arrived.
We felt that being at an all-girls school had put us at a disadvantage
in the social world, but being a late starter didn't hold me back that first night, I was kissed by two boys! It seemed that once I'd
started I didn't know how to stop. Later on at home that night, I felt
like such a tart and cleaned my teeth over and over again, worrying
what my friends would think. But on Monday morning at school I was a
bit of a legend, so it wasn't that bad after all!
11 My dad used to say that he never wanted his girls to be reliant on a
man for money, so we should have a skill or a profession to support
ourselves with financially. We weren't pressured into working hard at
school; it was just my parents' expectation that each of us would
achieve the best level of which we were capable. My parents' faith in
us paid off because all four of us have tertiary qualifications. It
always makes me smile that there are no wedding photographs of us on
the piano at Mum and Dad's these days, but there are photographs of
each of us in our academic gowns, holding our degrees on graduation
day! The photos are a reflection of the fact that my parents were most

proud of us on the days Friday nights were drama school at the Foote
Street Theatre. We put on plays and musicals in a local hall, and I
made lots of friends while learning heaps about performance from the
director. I was often the leading lady, with Hello Dolly being the
most memorable as it was so much fun. I remember I had a huge number
of lines to learn and had real difficulty remembering them, so
sometimes I just adlibbed, making things up when I couldn't remember
the real line! The problem then was that all the other characters on
stage knew their lines and couldn't keep up with my adlibbing. It was
brilliant -- the audience laughed and laughed, but the rest of the cast
was furious with me. On top of all that a review in the local paper
said too many nice things about me so I wasn't popular at drama school
for quite a while after that, but I loved the notoriety. Winning the
audience was a real buzz for me.
That same year my friend Anne-Marie was having a party at her house to
celebrate her brother's seventeenth birthday. All her brother's
friends were invited as well as our group from school, and it was here
that I saw Paul Bretherton for the first time. He was really
good-looking: tall, blond, blue-eyed, the type of boy that every girl
at my school wanted to be seen with. Paul had another girl, Genevieve,
sitting on his knee and I was green with envy, but none of us knew what
an important part of my adult life Paul would become.
Although I didn't see him again for quite a while, I heard an awful lot
about Paul from Genevieve. She and I had been friends and neighbours
from primary school days, Barbie doll playmates, but as we got older we
became very competitive, and our interest in Paul was a major example
of this. I listened to all her stories and dreams, never letting on
that I wished he was my boyfriend, not hers.
12 With year eleven the academic work increased in difficulty. By now
I definitely knew I wanted to follow an acting and singing career, so I
chose a broad selection of subjects including a new one called theatre
arts, a study of drama and theatre throughout history. I kept up my
studies at school but my extracurricular commitments always took up
lots of time: there were the school productions, debating, public
speaking and choir. I had been involved in singing for the school
since my first year there, but now I was often the solo performer.
Someone always accompanied me on the piano, under the watchful eye of
our music teacher. These moments are still so vivid in my mind, and I
guess it's obvious that no maths lesson ever had the same exhilarating
impact on me!
The girls in drama were a different bunch from my other group of
friends and included Catherine McClements, who by the late 1990s had
become well known in Australia for her lead role in the television
series Water Rats. Cathy and I became good mates as well as friendly
rivals in our study of drama. Later we were both chosen for an
integrating drama subject at Latrobe University between high school and
the beginning of university. It was great to work with university
lecturers in a proper drama studio; we felt so sophisticated and
grown-up. We were also involved in a couple of very special school
performances produced for the Catholic Schools Drama Festival, and in
year eleven our school won with Mirror to Elizabeth while in year
twelve we presented Quake.

Year eleven brought another special friend in Ruth Hutchinson, who came
to my school to teach biology and we just clicked. Ruth is only a few
years my senior and we had similar ideas on so many subjects, plus a
shared interest in music and the arts. Our friendship has continued

over the years 13 with any age difference becoming less and less
important.
Morag Fraser taught English and was also a huge influence on me at
school. Although I'd been a late bloomer as a reader, Morag opened up
the pages of so many great works of literature to me and helped me to
discover entire new worlds of ideas. I was lucky to benefit from her
strong, feminist approach as Morag later left teaching to pursue a
career in literary circles, becoming a critic and reviewer, and writing
for a Melbourne newspaper.
My high school years were empowering: they gave me knowledge, courage
and a healthy curiosity about the world. The strong women who taught
me were influential, as were the girls from outside my sheltered
parochial upbringing who became part of my circle of friends. One of
those girls was Annette, and at first we seemed to have little in
common: she was good at all sports - captain of a sports team even and yet for some reason we hit it off and became great friends. We
were first bonded by our dislike for our year seven home group teacher,
and united we worked very hard to make that poor woman's life hell.
Netty is softly spoken with a wicked sense of fun, so over the years we
had some good times. Another good pal was Simone, one of those girls
who kept us in line, knew all the gossip, read all the magazines to
make sure none of us became fashion victims, remembered birthdays and
made all social arrangements. The best thing is that over the years
she's still keeping tabs on us, making dinner dates and keeping in
touch.
Throughout my years at primary and secondary school I can never
remember being sick except for the occasional 14 cold My older sister
Jane had plenty of colds and bronchial infections, later being
diagnosed with asthma, and she was often laid up in bed. Elizabeth
also suffered a lot of illnesses during her school years and her
allergy to penicillin meant a simple infection would turn into a major
problem for her. Emma had terrible sinus allergies, and she still has
a little ridge on her nose from sneezing and having to wipe her nose
over and over again.
But me, I was healthy and strong despite my lack of exercise. My
appendix came out in grade six and my tonsils in high school, and those
are the only times I ever remember being seriously ill. I always felt
lucky with my health, especially compared with my sisters. My parents
had also been fairly healthy, but then when I was in year eleven my mum
developed a rare form of cancer, and for the first time in my life I
realised my parents were mortal.
It was a very difficult time. My dad was terrified he would lose Mum
and we could all feel the family's strength being sapped away. I
remember visiting Mum in hospital; her head had been shaved on one
side, and there were tubes draining out fluid, while other tubes poured
fluids in. I was really freaked out by it all. All I wanted Mum to do
was laugh, and making her laugh seemed the best thing I could do. I
had always been the clown in the family and it was a role I enjoyed, so
I joked and played silly games at her bedside until she smiled.
I think this was the hardest time we ever experienced as a family. We
were all affected in different ways, and when I reflect on it now I

wonder if I truly understood what was going on. my youngest sister,

still has terrible memories of this . She was only a little girl when

she faced losing Mum 15 and the impact that had on her life was huge.
At least by then I had an idea of who I was and maybe where I was going
with my acting and singing - Mum had got me that far. But because
Elizabeth and Emma were still so little, they needed Mum to get them
through puberty and settled into high school. I don't think I fully
understood the importance of having my mum around until much later in
my life, or maybe I just couldn't imagine life without her. Mum had
made lunches, broken up fights, ironed school dresses - all the normal
domestic stuff mothers do. But there was so much more. Mum taught me
to question, to laugh, to love and to care about the world, but it was
still too early in my life for me to realise that.
My mum Denny and our family were lucky that time. The cancer was rare
and very unlikely to reoccur after surgery. Slowly she recovered and
we began to get our lives back into shape. For many years after this
Mum had tests and checks to make sure the cancer hadn't reappeared, but
we never heard about those checkups. Mum didn't want us to worry. She
doesn't like dramas so I'm pretty sure I didn't develop my love of
performance from her side of the family!
In fact it was from Dad's clan that my inclination for theatre comes -they all loved the stage. I inherited a beaver-skin top hat from my
aunt when I was a teenager because I was the next generation to tread
the boards and she felt I should have this theatrical treasure.
Supposedly my grandfather wore it at the Princess Theatre in Melbourne
while playing Puss in Boots. Perhaps I was destined to be an actor.
My final year of high school arrived and I was having a ball. My
friends and I had healthy social lives, going out on the 16 weekend
with a great group of boys, none of whom were specific 'boyfriends'.
We went to the beach, the drive-in and to clubs, even though I was
still under-age, because I adored watching bands perform. This was the
heyday of Aussie music and I saw bands like INXS, Midnight Oil and
Australian Crawl in venues no bigger than a double garage. There were
a few romances with boys along the way, but nothing serious.
In May of our final year of school, the college ran a debutante ball.
In recent years it had been considered fairly uncool to be involved in
such an antiquated function. My older sister Jane had actually opted
not to go to hers - a mini rebellion. My friends and I made a pact to
bring this seemingly dull affair back into fashion, and our enthusiasm
ran through year twelve with an amazing 81 girls deciding to take part.
My group of friends decided to ask the same gang of boys that we hung
around with on the weekend, so there would be no pressure on anyone and
no chance of a 'couple' breaking up halfway through the dance
practices. Happily the boys agreed to be involved.
On the big night, we paraded up and down the dance floor at the
salubrious St Kilda Town Hall, dressed in virginal white gowns.
There's something magical about an event like that and even the plain
boys looked good in tuxedos. But I had eyes for only one boy there,
Paul Bretherton. He and Genevieve had eventually gone their separate
ways and the window of opportunity was suddenly open for me. The big,
blond sur fie was partnering his best friend's younger sister that
night, and to be honest, I think she also had her eyes set fast on him,
but what I lacked in competitiveness on the sporting held I made up for
where love was concerned. At the after party I worked every trick in

the book to be sitting next to him on a cosy beanbag. We spent hours

talking -- and kissing -- ignoring all the action around us. Finally,
Paul drove me home at 6 a.m. I was exhausted but elated: I'd got my
heart's desire.
Paul and I kept seeing each other, even though as a couple we were
chalk and cheese: I liked music, literature, the theatre and art, while
he liked football, surfing, cars and 'boys' stuff'. Yet, defying the
odds, we clicked and became quite a pair over the following months.
When Paul picked me up for our first date I am sure it was one of those
moments parents dread, from the instant their children are born. Here
was their seventeen-year-old daughter, still at high school, attempting
the most difficult year of her education and one that could affect the
rest of her life, and suddenly Paul Bretherton, surfer boy, enters the
equation.
My family and I heard the rumbling of a very loud car, which Paul was
at least sensible enough not to park in our driveway but instead left
the roaring beast under cover of darkness in the street. The fact was
that Paul's car almost gave both my parents instantaneous grey hair -a 1963 Holden panel van! In the 1980s this type of car was commonly
referred to as a 'shaggin' wagon' or 'sin bin', and their drivers did
not have the best of reputations with sensible parents. The assumption
was that boys who drove this kind of car did so for one reason only -to get nice girls like me into the back of them.
Fortunately Paul turned on his charm, smiled that dazzling smile of
his, called Mum and Dad "Mr and Mrs Healey', and made a good
impression, so I was allowed to leave their sight with him. Elizabeth
and Emma jumped around the house 18 giggling: they thought embarrassing
me in front of this boy, the one I wanted so much to impress, was a
great game.
We drove to another guy's house to pick him up and the three of us went
to a 'dusk till dawn' drive-in movie, although there was no way I would
be able to stay out that late. It wasn't very romantic in the car with
Paul and Charlie enjoying a gung-ho Bruce Lee movie together -- not
really a time for holding hands. Eventually we left the drive-in,
dropped Charlie at his house and then Paul took me home. He was very
sweet and we kissed goodnight in the car until Dad came out and turned
the porch light onto stop any shenanigans'.
Paul and I saw each other every Saturday night after that, but during
the week I had to study so our relationship was kept cool by academic
necessity. It was my final year of school and as the end of the year
drew closer, it looked as though I hadn't worked hard enough to pass my
exams. Everyone was worried, except me. My parents, the staff at
school and my friends were all seriously concerned. The school career
advisor even encouraged me to apply for a range of other courses apart
from my heart's desire, drama. The possibility of repeating the year
was discussed, but I was still determined to become famous and didn't
have time in my life for another year at school. On the day that the
results were due to come out, I went shopping to avoid any
confrontations with hysterical parents. The postman delivered the
envelope and my parents had to await my return. When I finally got
home, I hid in my bedroom to read the results, emerging elated a few

moments later like a butterfly from a chrysalis. I had passed and

passed well. Mum and Dad hadn't let on, but the school had rung them
earlier to say congratulations - they couldn't believe I'd done so
well!

19 My friends had all achieved fantastic results, but Giuliana, my

best friend, had missed out on a place in medicine by one mark. She
felt as though she had failed. When the university preferences were
posted out, we all made it into the courses we had chosen except
Giuliana, who went into science hoping to transfer to medicine in a
year or two (which she ultimately achieved). I was heading to Rusden
University to study a Bachelor of Education, majoring in drama and
media studies, my first choice. I'd made it into a very popular course
and had achieved this through a combination of my academic results and
an audition, where it would seem I must have shone.
It was time to leave the safety of Catholic Ladies College and for all
of us to go our separate ways, seeking new challenges. I was heading
out into the world confident of making my presence felt, leaving my
mark on this planet, learning about life, living it to the extreme and
making a name for myself. I would have a successful acting career and
a highflying lifestyle to match. I would take the fairy princess to
new heights and become a star.
20
CHAPTER 2 A Little Fish in a Big Pond
I headed off to Rusden University in 1982, not realising that I wasn't
actually ready for what lay ahead. Even enrolling was difficult:
lining up with hundreds of people to register for courses was my first
test. Finding my way around the campus was confusing, and the people
that I met were nothing like the kids I'd grown up with in my protected
school environment.
The drama department was populated by a bizarre collection of people,
but as this was one of my majors I tried to make friends. I was a
little frightened at first: there were punks, gay people, Goths,
dancers, people from different backgrounds and cultures, and lots of
boys! I came from a very 'nice' girls' school; we didn't have classes
with boys, let alone competitive ones, nor with the sort of characters
I encountered at university.
At first I had trouble adjusting, but eventually I made a few lends and

during first year I travelled to uni with a group of 21 guys in an old

car with the radio playing too loud. It was a long way from the
Melbourne suburb of Templestowe where I lived to Rusden in Clayton,
some 25 kilometres away, but somehow we always made it to class and I
began to love the subjects we studied. For the first time in my
education I didn't have to do maths and science, the boring stuff -- we
only studied and talked about the things I loved, the arts.
Drama workshops were an incredible thrill, experimenting with technique
and a range of theatrical approaches to both single and group-developed
performance. My other major was media studies, and in both subjects
over the first two years we concentrated on our skills development.
Media studies was a subject I had read about and loved the idea of, but
I had little or no first-hand knowledge of it. We touched on
photography, film studies, animation, video, film and editing. It was
incredibly challenging and technically difficult, but I hung in there
for the first year and kept up in all my classes.
But I still felt a bit like a fish out of water. The new friends I had
made lived far away from where I did and came from families so unlike
mine that it was difficult socially for me at university. When I
couldn't get a lift in the car pool, I spent long, lonely hours
travelling. Another problem was that I had been a big fish in a little
pond at school, and at Foote Street Theatre Company I was the person
who always got the main part and the singing roles -- the characters I
played were the ones that everyone wished they could be. Now all of a
sudden I was a little fish in a big pond. The people at Rusden were
all incredibly talented and creative, and now I had to try really hard
just to get a small part in whatever production we were doing.
My first months at university had not been everything I 22 had
imagined, but finally in second semester it started to happen. My
lecturer had decided we would perform Suddenly last Summer. It was a
combination piece of two short plays, then she added another piece to
present it as a three-part performance. I was given the role of
Catherine, a lead character and a woman whose sanity was in question.
It was a great role and I finally felt like things were coming together
for me as an actor.
I had to learn to smoke for the role, something I had never really even
tried as a teenager, let alone taken up. In the forty-minute period I
was on stage I had to smoke six cigarettes and I also had to butt one
of the cigarettes out in an asylum nurse's hand during the last scene.
One of my most graphic memories of the play was that each night the
woman who played the nurse wore a padded swatch in her hand, but on the
last night she didn't. It was as though the scene was happening in
slow motion. I looked at her hand and realised that there was no pad,
glanced an apology in her direction and then extinguished the cigarette
in her hand! I had to -- it was crucial to the script.
After the show I quizzed her as to why: had she just forgotten, or was
it on purpose? She said she had done it to create reality. I thought
she was crazy, but in other ways I respected what she had done. As an
actor she had tried to extend the impact of her performance. She was
brave and perhaps stupid, but she had certainly made the scene
realistic. That what we did at uni -- we learned to push the acting
boundaries.

For this performance of Suddenly Last Summer the entire cast had been
responsible for the behind-the-scenes elements the play - the lighting,
choosing the costumes, publicity, a so on. We had a very limited

budget, but Rusden was 23 really well re sourced We had a full-time

costume mistress, a designer, and people to help with sets and
lighting, all at our disposal.
Another student and I volunteered to design the production, a process I
found to be inspirational and challenging. I had never involved myself
in art or the artistic interpretation of plays and their presentation
before, but I was thrilled by this experience. As our setting was an
asylum, Kathleen and I were excited by the possibility for sensory
involvement by the audience. Each night before the show we washed the
floor of the acting area with a sickly smelling disinfectant. We
wanted the audience to remember not only the emotional and visual sides
of the performance but also the statements posed by their presentation
-- the slim line between 'reality' and 'insanity' -- and to go home
with a lingering odour. We wanted to create the uncomfortable feeling
that most people get when they enter a hospital and encounter that
sterile yet human smell. (Of course, much later in my life I would be
dealt the full impact of that reality.) As a result of this final
moment in first year, I chose my subjects differently in the second.
This time I took one double major in drama design and another in media,
plus a major in photography.
While we were still at school, Cathy McClements and I had made a pact
that at the end of first year university we would try for NIDA, the
National Institute of Dramatic Art in Sydney. We had an audition date
and agreed to meet there. Cathy went - I never turned up. I don't
really know why. I think my ego had been dented and I'd lost a bit of
confidence in those first six months at Rusden. In the past everything
had been so easy for me and all of a sudden I really had to struggle to
make myself noticed as an actor.
24 Cathy made it into NIDA and that was initially even more rushing to
my confidence, but it also turned out to be just the incentive I needed
to pick up my game and start kicking butt at Rusden. Just because I'd
come from a happy family background, an all girls' school and a
middle-class lifestyle didn't mean I had nothing to offer! I could
show pain, anger, hatred and lust with the best of them. Once again I
became confident that my acting career was about to change into a
serious business and that, in time, I'd make a name for myself.
It surprised a lot of people that Paul and I had stayed together
through first year university while leading very different lives. Two
years older than me, Paul had left school and was working as a
purchasing officer for a large stock feed company. Around this time he
also started studying at night for a Bachelor of Business and
Marketing. So he was working full-time in an office, while I was a
student; he had money and a car, I was poor and didn't even have a
licence. Paul seemed to understand I needed space to grow, but he took
me out on the weekends and we saw each other a bit during the week.
Finally I learned to drive and against everyone's advice bought "Cherry
Car' for $100. It was a Mini, bright red, and you had to get out and
lift the bonnet if you wanted to turn the heater on. She was a great
little car but, mechanical genius that I am, I drove her for quite a
while without ever checking the oil or water. Eventually all good
things must come to an end and I blew her up: the motor seized and she
had to be towed home.

Well, at least now Paul and Dad had some input into the running of my

rebuilt vehicle. They put the engine back 25 together and fitted
decent brakes. Later Paul saw a new body for sale so he indulged me by
buying "Maraschino Cherry', a car body with burgundy duco. This was a
very up-market Mini with windows that rolled up and down (in my old car
they slid across the window frame), plus a radio and a heater you could
turn on from the inside! I drove this car to Rusden for the whole of
second year but then, like a lot of "P' plate drivers, I had an
accident and Cherry was gone.
At least then I got my act together to find a good part-time job,
borrow money from Dad and buy a decent car. My job at Brashs, a record
bar, was fun and I worked really hard with a great group of girls. It
was obvious I had learned the gift of the gab from my dad, the
salesman, and on some items I could outsell the full-timers. It was a
fast-paced work environment with music blaring from surround-sound
stereo speakers -- a great spot for young people to hang out.
Paul would often come in, buy a tape and take me out after work.
During that stage in our relationship we seemed to go to a twenty-first
birthday every Saturday night, firstly for his group of friends and
later for the girls I went to high school with and my uni friends. It
was fun, but always a financial nightmare for me - being so
pig-headedly independent I wanted to pay my own way, but a lot of the
time Mum and Dad had to help me out as I attempted to stretch my meagre
budget.
In 1984, the third year of my degree, I too turned twenty-one, and the
Bachelor of Education side of my studies became relevant. All the
knowledge and skills we had developed finally became useful as we took
them into the classrooms of Victoria. It was also a time when a number
of my fellow students dropped out -- they had been good at the self 26
indulgent aspects of drama and theatre, but the idea of sharing these
with children was just too difficult for them to cope with. To get an
insight into kids we studied psychology; we looked at sociology and
classroom program development; and then we went out and worked with
kids.
I really liked this side of my degree and proved to be good at it,
especially when working with primary school students, maybe because I
was so close to them in stature! I was able to work with the little
kids down on their own level, but then when I worked with secondary
students my voice was so loud that they couldn't compete with me
either. I loved teaching -this was an exciting time. I did my
speciali sed teaching method in drama and learned to develop programs
that not only inspired the students but also challenged me. The
interesting thing about teaching a subject like drama is that you can
never really have a preconceived idea about what will happen: you can
teach a lesson to one group and that same lesson to another and the
outcomes will be completely different. I thrived on this.
One of the most interesting things I did that year was teach drama to
kids with special needs. As a class we went to a local school where
there was a range of both physically and intellectually disabled kids,
but sadly the staff expectations of the students were very low. We
would ask the staff questions like, "Do these guys know their colours?"
or "Will they participate in a group role play?" but the response
always seemed so negative. In total contrast, we were so excited and

enthusiastic that it was hard to stifle our energy.

For one lesson we borrowed rags and cloth pieces from the costume
department at Rusden and dressed four students in costumes: the Red
King, the Queen of Green, the Prince 0 Yellow and the Blue Princess.

All the characters were very 27 sad; they stood alone in the corners
of the room and in the middle was a pile of the mixed-up rags of all
colours. The other students had to sort out the colours, taking blue
or red pieces to the appropriate characters to make them happy again.
For me the most beautiful moment was when a little boy in an electric
wheelchair went back and forth from the Blue Princess to the Queen of
Green with a strip of aqua-coloured fabric in his lap. I was so moved
by this: he not only knew his colours and wanted to make the sad
characters happy, but he was also discerning enough to know that this
colour was a combination of the two, blue and green. As the weeks
passed in this very special class, elective mutes sometimes actually
spoke because they became so involved in the drama. These were
extraordinary times for me.
In 1985 I finished my fourth year of uni and received my degree. After
that I worked full-time for six months at Brashs, slogging it out
behind the record bar and making money, but wondering why for four
years I had worked so hard for no apparent reason. Eventually I got my
first full-time teaching job at Greenwood Secondary College in
Bundoora, a northern suburb of Melbourne.
Paul and I were still very much together, but I felt my commitment to
him was stronger than his was to me. I think, like many guys, he was
frightened of taking that next step towards a more permanent
relationship, while I just loved him desperately so was willing to wait
for him to grow up. He was living out of home and I spent a lot of
nights at his house. After working for a number of years he now made
good money so could afford nice holidays and a good car, as well 28
being able to go out whenever he wanted and move out of home. I'd been
envious, but landing a teaching job finally meant that I could do the
same.
Teaching was easy for me; I was lucky that the students seemed to like
me and my style of teaching. They responded well in class and liked
the subject, so I enjoyed my time at school with them. It didn't take
long to find out that the kids had secretly nicknamed me "Barbie' -- I
certainly wasn't tall like the doll, but they christened me this
because I had long blonde hair and a good-sized bust. At first I was
shocked, but then decided to take it as a compliment. In my
experience, students never hold back - they call a spade a spade, and I
find that refreshing.
Most of the students at Greenwood were migrants or first-generation
Australians. In my first weeks at the school the kids were
persistently curious about where I came from and one day, when I was
again insisting that I was Australian, a boy turned to the rest of the
class and explained on my behalf: "She the same as us, Aussie, but she
comes from the other side of town - that's why she talks that way!" I
never thought I spoke with a bit of a plum in my mouth but the kids
sure did.
I had only been working for a short time when Annette, my good friend
from high school, and I decided to move out of home together. We
rented a little townhouse in the inner city suburb of Fitzroy,
surrounded by trendy restaurants, bars and dubs. We fitted it out with
begged and borrowed furniture and then happily settled into a
late-eighties yuppie existence. Paul would come and stay - we'd go out

all night and sleep late into the day.

Some nights I was also working

for a 29 newly launched theatre company -- they developed shows and I

travelled around Melbourne and country Victoria with them as well as
designing sets and costumes for the shows. Meanwhile, on the home
front Annette and I started 'soup night' at our house to feed our
unemployed actor friends. We would go to the Victoria Market and buy
lots of soup ingredients, then whip up a huge potful. On soup night
anyone could visit knowing that there would be a bowl of soup for them,
and if lots of people turned up, we just added more vegies and stock to
stretch the pot. Bread was a bonus, and anyone who could afford it was
expected to bring a loaf. Soup night was always mid-week and Paul kept
his distance from what he considered to be the arty freeloaders who
came to visit on those nights. This was definitely not his scene.
Annette had always been a tidy person at home and I had been an
absolute pig. My room was so messy that if Mum couldn't find any
teacups she would raid my room searching for them. When Netty and I
moved out together we reversed roles: Annette couldn't be bothered
keeping the same rules that she had been expected to keep at home,
while in an absolute turnaround I wanted everything neat and tidy. In
the end things balanced out and we had a good time in Lester Street.
It was one night during this period of my life that a strange thing
happened. It must have been 1987 and I was staying over at Paul's
house in Box Hill -- a house full of smelly boys and dirty dishes, so
no prizes for guessing that I didn't stay often. But Paul was tidy and
clean so his room was too, except I always had to step over a surfboard
and the tail shaft of the latest car he was rebuilding.
Early one morning I woke up and rubbed my eyes as usual 30 but realised
I couldn't see very well out of my left eye. I woke Paul, who looked
into my eye but couldn't see anything strange, so I snuggled down again
and went back to sleep, hoping it would be alright. When I woke again
I panicked. My eye was no better, in fact it felt really weird -- it
didn't hurt, but I was frightened and started to get upset.
Concentrating on what was actually wrong was worse: I could not see
properly. If I closed my right eye, my vision was gone in the centre
of my left eye -- all I could see was small amounts in the peripheral
view, around the outskirts of my normal vision.
We immediately packed up, went to Mum and Dad's place and made an
appointment for me to visit our family doctor, who ran a few simple
tests. Although my eye was not inflamed so it seemed unlikely, the
doctor reassured me that it was probably an infection and prescribed a
simple ointment to use over the next few days.
A week went by. I kept putting the cream in my eye but it got no
better. Although it was probably dangerous for me to drive, I do
remember doing so and being super-careful because my vision was so bad.
Things should have improved so I went back to the general
practitioner, whose reaction was to send me to an optometrist to check
if I needed glasses. I wanted to yell at him so he could understand -I didn't need glasses, I was still blind in one eye! The optometrist
knew immediately that there was nothing he could do and referred me on
to an ophthalmologist, an eye specialist.
All these referrals back and forth had taken about a month, but after
visiting the new doctor my vision was just as bad as it had been at

Paul's that first morning, and still no medical explanation had been

offered. The odd thing was that I had 31 A Little Fish in a Big Pond
become used to seeing the world through one good eye and was coping
okay physically. With practice I was even a little better at driving,
but I still used public transport as an alternative when I could.
Next I was sent to a Collins Street specialist, supposedly the best
around. Her scary title was a neuro-ophthalmologist, a specialist who
works predominantly in testing the relationship of the brain to the
relaying of vision. I was extremely frightened because I knew that for
such a specialist to be involved, this had to be a really serious
situation.
Her offices had many strange little rooms full of gizmo machines. Over
the coming appointments, the doctor charted my vision: she made me look
into black spheres, or stand on one leg; she put pins into my fingers
and toes. Then she threw questions at me: Could I smell cloves? Could
I see red? Could I feel ice? Could I hear the tuning fork held to my
ears? Could I taste the tang of salt on the end of my tongue? It all
seemed like witch doctoring to me because I was used to going to the
doctor, being given a script for some medicine and then getting well.
After this series of tests had been going on for weeks, the bills
started piling up at my house and yet the specialist still hadn't fixed
my vision - she hadn't even been able to give my condition a name.
Next she organised for me to have more complex tests: a CT scan of the
brain, blood tests and an EEC. I was scared and confused. What did
all this mean? What was wrong with me? Would my vision return?
I was becoming angry too -- none of the tests had disclosed anything
conclusive and I had been blind in my left eye for over two months. I
had a major fear of tumours and a nagging feeling that things could get
worse. When the specialist 32 mentioned the possibility of medicine I
jumped at the chance of a quick fix, but she then opted not to
prescribe it for me as she thought it would probably not change the
situation dramatically. For her there seemed little urgency about my
condition, which she casually labelled optic neuritis, while for me it
was all-consuming.
I kept working at school but I stopped the theatre work -driving at
night was just too difficult. Eventually my vision started to return
to my left eye. At first all I could see were blurry black and white
images and flashes of light, then some colour crept in starting with
greens and yellows. This all happened very gradually over several
months until vibrant colour was finally and miraculously a part of my
vision once again. The last colour to return was strong red. I was
shown a visual depiction of colour blindness in a book and had a new
understanding of the condition: I could see with my good eye what the
world looked like to my recovering bad eye.
After this episode, things settled down again and I got on with work
and my social life. I did, however, change my role at school slightly
- I kept teaching drama, that was always a priority, but I also took on
the added responsibility of integration teacher. At Greenwood we had a
fairly large number of disabled children attending a mainstream high
school. Because of my experiences in special education while I was at
university, the school offered me the job of making the integrated
educational experience an option for students with a range of

disabilities.
own future.

Once again I was unaware that this move foreshadowed my

I worked with a group of fascinating kids who had 33 managed, with the
support of parents and guardians, to overcome their disabilities and
struggle through the mainstream education system. Louise and Evie with
Down syndrome, Michael with spina bifida, Daniel with severe cerebral
palsy, and others with hearing impairments, behavioural problems,
emotional, physical and intellectual disabilities -- all of these young
individuals were surviving in a system that had little to offer them,
and yet each of these students not only went to school but also learned
and interacted with their peers. In turn they taught the rest of the
school about tolerance, understanding, sharing and the true meaning of
friendship.
I was teacher, aide, advocate and go-between for students, parents,
staff and clinical workers. It was one of the most rewarding things I
have ever done, while at the same time one of the most frustrating and
demanding. I had this job for two years - and it was slowly killing
me. Reluctantly I left the school and headed to a new one where I went
back to classroom teaching.
About this time Paul and I started looking for a house to buy, because
that seemed to be the next step in our growing commitment to a life
together. Well, that's how I saw it, but I suspect that in Paul's head
it just made good financial sense to buy a house and stop wasting our
hard earned money paying rent! We looked all around Melbourne trying
to find the right place. We worked at opposite ends of Melbourne so it
was difficult finding a compromise, but we ended up buying a little
weatherboard home in the suburbs, in desperate need of repair. It was
described as a renovator's delight, and our friends and family were
horrified when they saw the condition of the place. I was just excited
to be moving in with Paul and could only see the ugly wallpaper through
rose-coloured glasses.
34
CHAPTER 3
Having My Wings Clipped At the end of 1990, Paul went to the United
States for a couple of months to study, with the aim of completing the
last two subjects of his marketing degree. I was left in Australia to
organise the renovations to our new house and to feel nervous about him
being away for so long. I still felt that he hadn't made a real
commitment to me like I had to him, and the idea of a good-looking
Australian man potentially in the hands of some glamorous American
woman made me nervous.
Every time he rang me there were people in the background yelling
things, usually women, which made me feel even more upset. I was
missing him, I was jealous and I was angry, all in the same moment.
Being stuck in downtown Ringwood watching a small tractor dig footings
for our house extension while tree fellers removed excess trees seemed
totally unglamorous!

Drama queen that I was, I felt this was it - I was losing 35 him.
During our phone conversations Paul sometimes mentioned the name of a
woman I didn't know and my blood just boiled with jealousy as I
imagined their romantic trysts, alone together on the other side of the
earth. All my fears seemed to be confirmed when I picked him up from
the airport on his return to Melbourne. He acted cool, barely kissed
me and seemed to talk to everyone else who had come to welcome him
home.
But when we were finally alone, Paul talked like he never had before
about love and his feelings for me. He said that he hadn't understood
until we were apart how much he loved me, or how much he could miss me,
or how much he wanted to be with me. We both cried and then knew we
wanted to be together forever. Suddenly our house was no longer just a
sensible investment -- it was now going to be our home. Whatever had
transpired in America had actually worked in a positive way for our
relationship, but for months after Paul's trip he received letters and
even phone calls at work from a woman over there, trying to convince
him to return. But my wonderful man had made his choice and thankfully
it was to stay with me.
In March 1991 we had to fly to Queensland for a friend's wedding. I
remember finishing work after a gruelling week, and then Paul picked me
up from school so we could go straight to the airport. It was an
unbelievable rush: parking the car, tickets, luggage, and then we
discovered that our plane was boarding at the gate furthest from the
check-in desk, so we had to run to catch the plane. I had on a nice
suit, stockings and shoes with a little heel, carrying bags and my
jacket over my arm as I ran to make the flight. Suddenly I couldn't
keep running: my knees ached, locked then unlocked, and bent when I
didn't want them to. Then I wasn't running but merely stopping myself
from falling over. My legs were out of control, my gait ungainly. It
was painful and embarrassing. I desperately tried to keep up with Paul
and his long, strong legs but I just couldn't -- it was physically
impossible for me.
Paul became flustered by my awkward movements and yelled at me to hurry
-- they were holding the plane for us! I took off my shoes, hoping
that being barefoot would improve my movement, but by now my feet were
dragging and I ripped the soles out of my stockings and grazed my toes.
I realised I'd never been sporty, but why on earth was just running
for a plane so difficult? It didn't make sense. When we finally
arrived at the plane, I put my shoes on over my bleeding toes, while
Paul went quiet and barely spoke to me.
After that inauspicious beginning our trip to Queensland and our
friend's wedding were great fun, but my inability to walk properly
remained. My gait was still ungainly but I avoided walking or running
any distance, so I didn't realise at the time that these physical
changes were signalling the end of my life as I knew it. Blissfully
unprepared for the life-shattering drama that lay ahead, the possible
connection between my inability to run to that plane and my previous
loss of sight didn't occur to me. I only knew that what was happening
was not normal so, in an effort to find out what was wrong with me,
Paul and I agreed that I should see a doctor on our return to
Melbourne.

I went to a GP and had lots of X-rays taken to try to discover the

cause of the weakness in my legs. A physiotherapist also gave me a

series of exercises to strengthen my 36 37 lower back and loosen my

kneecaps, because it felt as though my knees had stiffened. Slowly
things settled down a little. I tried to do reasonably paced walks to
improve my flexibility and strength, but it didn't work. I was
exhausted by exercise and my legs became easily fatigued, yet my doctor
and phys io could offer no diagnosis or remedy.
One night I woke up and found I couldn't go to the toilet. I sat in
the bathroom for ages waiting to pass urine, but then it became
somewhat painful. Hours later it became excruciatingly so, and I had
to go to hospital. In Emergency, the staff looked at me curiously -- a
seemingly healthy young woman who was obviously in a really bad way.
The doctors could not make sense of it. Eventually they used a
catheter, a long brown rubber tube which they inserted into my bladder
to empty it. It was an uncomfortable and degrading procedure, but when
the nurses finally got the catheter in position the physical relief was
fantastic.
No longer in pain, I could start to think about what had happened to
me. I had experienced another weird medical moment to add to the
growing collection: sore knees, lower back pain, dragging feet, an
incidence of optic neuritis and now bladder problems. Were they just
random, unrelated incidents, or was there a connection?
Days later I went to see a urologist -- a kidney and bladder specialist
- named Dr Peters. I told him about my history, although at that stage
I still didn't suspect that the optic neuritis was in any way linked to
the other problems. But as I would learn many months later, the
symptoms I detailed started to form an unattractive pattern and aroused
this doctor's suspicions.
Dr Peters sent me back to the same neuro-ophthalmologist 38 I'd seen
previously. I was to go on the test circuit again: CT scans, eye tests
-- a general work over concentrating on my vision. I'd had all this
before, and this time it didn't seem relevant -- my problems were
physical, not sight-related, as far as I was concerned. But at that
stage I wasn't sufficiently assertive enough to say what I was
thinking, which was something to the effect of: "Look at my legs, you
idiot, my eyes are fine." I was becoming increasingly impatient with
her procedure.
I was also frightened. This whole debacle had been going on for weeks,
which were quickly turning into months. Maybe it was in my head, I
started to think: I had been to so many doctors for so many problems
that I suspected I had become a hypochondriac. I'd talked to
specialists about my eyes, my bladder, my knees, my feet, feeling cold,
getting hot, pins and needles, why I couldn't always pass urine, and
still no diagnosis. No solutions. No medicine to take to make me
healthy again. During these trying months, Paul listened to all my
complaints, but we never discussed a worst case scenario -- we were
young and believed a cause and then a cure would be found. I think
underneath I felt it was more ominous, but I never told Paul my
fears.
The neuro-ophthalmologist sent me to yet another neurologist, and she
eventually put me into hospital in May 1991. I arrived at Monash
Medical Centre with no idea of what was going to happen to me in the

immediate or long-term future. I had never been into this public

hospital before -- it was huge, grey and forbidding, and I felt very
small and inconsequential. I don't remember everything about it -that's probably my mind taking care of itself, choosing to deny
knowledge! The experience was not what I would call a positive one.

was guided to a place called the neuroscience 39 ward, but even that's
such a blur I can't remember who came with me. All I know is that I
was terrified and, as things transpired, my fears were not
unjustified.
My first impression of the four-bed ward was that it was clinical and
sterile, with a bed for each patient, a small set of drawers and a
curtain around each bed to provide some imagined level of privacy.
Whoever invented curtains around beds was not really looking at the
situation, as far as I'm concerned. They certainly don't create a
private space for those unfortunate enough to be on the inside as
anyone in the surrounding area can hear all that is said and done
within those curtains. Usually the curtains are drawn for good reason
-- a confidential moment between you and your doctor, a medical
procedure, a bodily function - but a flimsy curtain cannot hope to keep
any of these private.
I was told to get into bed and wait for the admissions doctor. The
curtains around my bed were drawn back and I faced the three other
inmates of my shared ward. These women looked so desperately ill that
it frightened me to think I could be grouped together with them. What
was the matter with me? Could I be that sick?
The woman next to me had both sides of her bed up to create a cot.
Toula was only young but her condition was very unstable -- she
suffered from such severe epilepsy that no medication could control her
seizures. They came regularly throughout the day so she was on a
monitor to record any changes in her brainwaves. This also alerted the
nurses to check her any time she had a fit.
Diagonally across was an older lady, Lorraine, who was attached to a
plethora of machines because she was having multiple, small strokes.
The doctors were trying to control 40
these through blood-thinning medication, but with little success.
Opposite me was Elizabeth, who'd had a second brain tumour removed.
Completely bald with an ugly scar running across her head, she was on
chemotherapy and not doing well. Her husband and two daughters came to
see her every day, because although Elizabeth knew she wasn't going to
beat this illness, the procedure was buying her some extra time to
spend with her little girls.
I assumed that to have been placed in such an environment meant that I
was there for an acutely serious reason -- a patient did not end up in
this ward for a couple of days' holiday and a well-earned rest. It
seemed to me that my fears had been realised -- I was to be checked for
the presence of cancer, or perhaps a major dysfunction of my brain.
Either way it was obviously something really, really serious. I lay in
bed all day worrying. I hadn't had a cigarette all day and was
starting to feel withdrawal symptoms -- maybe this was a good time to
give them up. Finally in the evening a doctor came to admit me.
She was a pretty young woman wearing jeans and a
she gave me a neurological examination I related
happening recently, mentioning my history of eye
Then, as casually as if she was planning what to

windcheater. While
what had been
and bladder problems.
have for dinner, she

asked if anyone had suggested the possibility that I had MS - multiple

sclerosis. No one had. She seemed quite convinced that I probably had
MS. I panicked. Although I didn't really know what MS was, I knew it
was bad, and I felt angry that this doctor could be so casual about
diagnosing such a serious condition without so much as one test having
been done.

41 How did she know anything? But if she was so sure then why hadn't
any of those other expensive and highly regarded specialists mentioned
this possibility before now? Surely they must have had a suspicion?
I didn't have a phone in my room to ring anyone and talk through this
possible scenario, so I lay awake all night rolling it over in my head.
No way I had MS. A friend of my Aunty Bunny's had MS -- she lived in
a hospital and needed full-time care. When anyone spoke of her it was
in hushed tones and with sadness in their eyes. Physically dependent
on those around her to stay alive, she could no longer walk, feed
herself, or stay awake for any length of time. I put this extreme
image out of my head. This couldn't be what they were talking about,
not that bad. I reassured myself that when I had all the tests the
doctors would find something else, something simple, something that
could be fixed no matter how long it took. Not MS. Please God, not
MS.
Nurses woke me at 6 a.m. so I could wait hours for the first of a
series of tests. I had only just managed to get to sleep, wiped out by
sheer exhaustion. I was to have a spinal tap and a myelogram: easily
said, not so easily done. During a spinal tap a needle is inserted
into the space between two vertebrae to extract a small amount of fluid
from the spinal cord for testing. The opposite action takes place in a
myelogram and some radioactive fluid is forced into the spine so clear
X-rays can be taken. Wearing a hospital gown I walked down to the
radiography area and lay on a long X-ray table with doctors, orderlies
and nurses buzzing around. I felt nervous and this was compounded by
the fact that the staff talked little to me, making light conversation
amongst themselves almost as though I wasn't there. They barked
various instructions so that 42 I knew when to roll onto my side on the
thin table, while an orderly stood at my head and a nurse at my feet.
One of them explained that they had to take fluid out of my spinal cord
to check its colour and consistency. I then had to put my head to my
knees while the orderly held me in this position and the nurse rolled
her body over me to assist the doctor. It was very painful and tears
rolled down my face while they had more than one attempt at getting the
needle in position.
My head was crammed with fear as I knew my spine was precious, the
central line of communication from my brain to my body. I was acutely
aware that one false move on my part or theirs could cause major,
permanent damage. This painful procedure seemed to go on for an
eternity and I barely breathed because of my fear of moving. I chanted
"Be strong, Anna' over and over to myself like a mantra -- a comfort, a
prayer, something to focus on.
It was finally over and the myelogram was next. As the doctor syringed
the coloured fluid into my spinal cavity, I could feel pressure and
pain. The radiographer started the X-ray machine to record the
movement of the fluid up the spinal cord, and then the nurse and the
orderly moved me from side to side, as well as angling the bed this way
and that. They pushed and pulled my body into countless shapes to get
the best pictures. I kept reminding myself to be strong, but I was so
frightened and my focus had changed. I was no longer scared of the
machine or of the people doing this procedure - now I was facing up to
the reality of what this test might find. If a tumour was found, this
could explain my problems. No tumour would be another matter -- it

could support the young doctor's dire prediction that my mystery

illness was multiple sclerosis.

43 Finally I was taken back to my room where I had to lie completely

still for four hours, so as not to push the radioactive material
further through to my brain. I had to drink plenty of liquids to flush
the chemicals out of my body. No pillow and a cup with a straw for
water. I was left alone to face this next challenge with no visitors
and no one other than three very ill patients to talk to. I kept
drinking as I'd been instructed, but of course I soon needed to go to
the toilet. Using a bedpan without sitting up was an awkward and
difficult process, especially as this happened repeatedly during the
following hours. A nurse would help me by guiding the bedpan under me,
both of us fully aware that too much movement could impede my recovery
and even create a whole new set of problems.
These fears came to fruition when my head started to ache with an
indescribable pain. My vision was impaired and the front of my head
felt as though it would explode. I became severely nauseous and
vomited. What I was experiencing was a migraine of extreme
proportions, induced by moving after having the myelogram. They
offered painkillers and I gratefully took them. It hurt so much when I
spoke that I could only whisper my needs to the staff.
Early that evening the doctor on duty told me that the tests had been
negative. There were no abnormalities in the spinal fluid and no
tumours in or around the spinal cord. But I didn't actually feel
pleased with these results because to me this could surely mean only
one thing, multiple sclerosis, although there were many more tests to
come before a 'diagnosis by elimination' could be confirmed.
As I lay there, nauseous and in pain, I made a pact with myself: to set
Paul free. The diagnosis of MS was becoming a 44 certainty and I
couldn't hold him to the promises we had made to each other over the
past few months. In my heart I didn't want to do this, but in my head
I knew that if I didn't offer him freedom from his commitment to me
then I wouldn't be able to live with the guilt, thinking that the only
reason he had stuck by me was out of sympathy.
When Paul arrived to see me that night, he knew by the look on my face
that things were bad. He sat down low, right up close to the bed so I
didn't have to speak too loudly. I told him about the tests and how
the admitting doctor mentioned the possibility of multiple sclerosis.
He was shocked and disbelieving.
I told him he didn't have to stay with me, that he could go and that I
would be okay. It was the hardest thing I'd ever done and was such an
awful moment that Paul says he doesn't remember it, swamped as he was
by the probability of my having multiple sclerosis. All I remember is
that he looked down at me with tears in his eyes and said,"I can't go
anywhere - I love you. That's now and forever, good and bad." I felt
so relieved that Paul was prepared to stick by me in this ghastly
situation that I cried too. Neither of us had any real idea what we
were going to have to face in the future, but what seemed important was
the fact we were prepared to do it together.
The next medical
evaluation. I'm
competency but I
doctors. On the

hurdle I was recommended to jump was a psychiatric

not sure why I had to be assessed for mental
suppose the procedure was automatically ordered by
other hand, perhaps anyone who spent time in the

neuroscience ward needed psychiatric counselling before returning to

the outside world.

45 Maybe my behaviour and attitude had deteriorated after the tests

and diagnosis and the staff were concerned that I might do something
irrational. Or maybe it was a general rule that anyone facing
diagnosis of an incurable disease is given a brief psychiatric work
over before they left the ward. I'm really not sure.
Anyway, there I was, still horizontal and ill from the myelogram, when
this bloke turned up at my bedside without any forewarning. He pulled
those flimsy curtains around my bed as though it would put a barrier up
to the others in the room and make our conversation totally private.
At first I supposed he was a priest who had come to counsel me, but
then he shoved a card under my nose providing his name and credentials.
He was one of the hospital's psychiatric consultants and had an
incredible array of letters and initials after his name so I probably
should have been impressed, but I was too frightened and sick to
care.
Even though I was heavily doped because of my continuing migraine, I
tried to rally all my senses and to concentrate hard enough to disprove
the need for this psychiatric assessment. I was sick -- sick with an
incurable disease, it would appear -- but I wasn't crazy. I was too
ill to lift my face high enough off the pillow to look him straight in
the eye, which I felt was an unfair way to do an examination like this.
So I remember looking at the multicoloured stripes of his jumper and
thinking that he might have an awful lot of academic credentials on his
card, but he was no fashion plate.
He started to ask questions -- simple stuff at first like name, age,
what I did for a living, where I grew up, were my parents still
together -- and I answered all of his questions with ease. They
weren't intrusive and even seemed to show a level of 46 concern. I
explained I had an older sister, Jane, and two younger sisters,
Elizabeth and Emma.
Then the questions came thick and fast. Do your parents fight? Are
they heavy drinkers? Does your father ever hit your mother? Did your
father ever touch or interfere with you when you were younger? If I
had had the strength, I would have thrown him out of the room -- I was
so upset that he could even imagine such things about my family. What
tenuous connection those questions might have with my probable
diagnosis of MS I couldn't imagine. My sisters and I had been brought
up to believe we were the jewels in the crown that was our family. How
could I explain that I was one of the lucky ones to someone who
continuously dealt with the mental misery and pain caused by
dysfunctional families?
After this upsetting encounter, I lay flat on my back for a week, then
eventually curled into the foetal position. I wished it would all just
go away and leave me alone -- I wanted to be Anna again. I remember
thinking that if it was cancer, a tumour in my brain or spine, then at
least they could cut it out. What I wanted was a diagnosis with an
enemy I could fight. I still knew little about this illness called
multiple sclerosis, but every time someone in the hospital mentioned it
an overriding feeling of hopelessness crept over me. MS was a life
sentence: no cure, no fight, just a pathetic waiting game as the
condition worsens in its own time.

The staff started to let small pieces of information about the disease
slip. I didn't catch it, it's not contagious, and there doesn't seem
to be information to suggest it can be passed down from one generation
to the next. MS is when the myelin sheaths or protective covering
surrounding nerves in the brain and spinal cord break away. This

leaves holes in the 47 covering and therefore messages cannot travel

effectively through the nervous system from one point in the body to
another. For me at that time this could mean the message from my brain
to my foot was not travelling clearly, explaining why my foot would
drop as I walked along. But still my diagnosis hadn't been confirmed
-- did I have MS or not?
I had lots more tests while I was still in hospital because with no
certain diagnosis the doctors had to keep searching for an answer. The
most significant ones were the neurological exams and I reckon every
doctor and intern in that hospital had a go at doing one of these with
me as they tried to find an answer. Stripped down to your underwear
and put through gymnastic paces almost naked so the doctor can watch
your muscle and reflex response, these tests can be completely
humiliating. I suppose this is when I developed the idea that who I
was had little meaning -- my case study was all that made me
interesting.
In retrospect these tests seem almost funny -- again the sort of things
a witch doctor might perform. The various exams had instructions like
these: place your hands out to each side then put your pointer finger
on your nose; stand on one foot, slide your left heel down the front of
your right leg, then do the opposite; cross your legs while the doctor
uses a small hammer to tap under your kneecaps. Normally the response
the doctor is looking for in this last test is a neat little bounce,
but my reaction was often a nasty, out-of-control kick - which I
sometimes hoped would smack one of those po-faced student doctors in
the mouth. It all seemed so futile. What could these sorts of tests
possibly tell them about my health problems?
Doctors stuck pin pricks into the soles of my feet, the tops of my
hands and my face. They would dust my face with 48 feathers and check
me from the top of my head to the tip of my toes as they noted my
sensitivity to these stimuli. A block of ice was melted on my back,
wiped over my face, run over my arms and legs, and then the same
question over and over again: "How does that feel?" I got to a point,
after so many days in hospital and so many repetitions of the same
tests, that I just didn't know any more. I felt immune. I couldn't
tell. I had been checked so many times that I no longer knew what was
normal.
Neurologists love to look into your eyes. What I was unaware of then
was that the optic nerves can tell a lot about multiple sclerosis, so
the doctors asked an awful lot of questions about vision. Without my
realising it, the previous episode of optic neuritis actually provided
the doctors with a window into my condition, a place to start looking
at whether MS may have manifested itself way back then. That's if I
had MS of course. Still no one was certain of this diagnosis, although
to the doctors it must have become increasingly apparent that alternate
diagnoses were thin on the ground. But I was only the patient and not
privy to their suppositions.
Over and over again I did my callisthenics in the guise of being
tested. On one occasion a group of about five new interns came into
the room to be instructed on the condition called multiple sclerosis,
which Anna may or may not have -I'd had enough! I still had an
almighty headache as a result of the initial myelogram and couldn't sit

up. When they came towards my corner of the room, I rolled over to
avoid eye contact, but knew they'd keep coming. Enough, I wanted to
scream. I stood my ground -- lying down -- and told the doctor in
charge that I wouldn't answer any questions. He started to explain how

important it was to share 49 knowledge, that this was a teaching

hospital and that I was a public patient.
I'm Anna, I felt like hurling at them. Anna, Anna, Anna! I lost it
and began crying hysterically. Then I buzzed the nurse and pleaded
with her, explaining that I couldn't do it all again to please a new
audience -- it changed nothing for me and I didn't want to be a guinea
pig any more. I discovered that sometimes nurses have more clout than
doctors and won that round - there would be no examinations performed
on this patient today for the benefit of a pack of young interns.
During my stay at Monash I apparently had many visitors, but to this
day I cannot remember seeing them. I received flowers and cards and
couldn't tell you who sent them to me -- I was just too sick. A lot of
people stayed away, warned by Paul and my family not to visit so I
didn't have to cope with their grief as well as my own. Paul's family
came and stood around the bed, not knowing what to say or do. I lay on
the bed as they talked over me as if I didn't exist, thinking feebly:
"I'm down here on the bed. You did come to see me, didn't you?" But
another side of me didn't want to talk because I didn't want to discuss
what was happening to me. There are lots of things I don't remember
because I was very doped up, but I also believe my mind has chosen not
to remember the truly unpleasant details of my stay in hospital.
When it finally seemed I must have multiple sclerosis because
everything else had been discounted, the one statement that stands out
in my mind is: "There is no cure." I think back to that all-consuming
sentence, so short and yet so final. I remember Paul holding my head
in his hands, speaking softly and being there when I needed to cry. I
remember my mum and dad with tears in their eyes, watching the sparkle
fade from their daughter's eyes.
Mum preoccupied herself with washing nighties and keeping things just
so, a practical approach to dealing with the moment rather than looking
towards the future and the devastating implications if I did have MS.
My dad just stood there wishing he could change places with me, that
this dreadful life sentence was happening to him, not his little girl.
My parents had always been able to keep me so safe; I had always felt
so special and loved as a kid, and believed that nothing could hurt me.
I had been taught to believe I could do anything, that I was in
control of my life. But here we were facing something that none of us
could control or change. From the beginning the doctors emphasised
that no fight would beat multiple sclerosis, if that was indeed what I
had.
My sisters came in force -- united we stand, divided we fall. Jane,
Elizabeth and Emma were up-front when I needed their strength and
quietly in the background when I needed their support. They brought
tears when I needed empathy and silly stories when I needed to be
distracted by a good laugh. Over the years there have been many
arguments and power struggles within our family, as in any normal,
healthy family, but when faced with a crisis of insurmountable
magnitude, such as the possibility of my having MS, there is nothing
that surpasses the strength and support of the Healey women. Thank
God.
My Aunty Bunny came to the hospital, and like Mum she wanted to do

something tangible. She lifted up a stainless steel cover from one of

the hospital meals and shook her head: "No one can be expected to eat

that! What can I get you to 50 51 eat, Anna? "There was nothing I
wanted, not even my aunt's delicious cooking, except to go home. Home,
home, home-surely there I could regain some semblance of reality, some
sense of dignity, and perhaps even forget all about this horror
story.
On the day I had entered hospital I had been a smoker, not a heavy one,
but a smoker just the same. To have a cigarette I had to be well
enough to walk outside or else convince an orderly to wheel my bed out,
but I wasn't well enough physically or emotionally to do either. So
while coping with the pain from the horror myelogram and at the same
time dealing with the elusive diagnosis of MS, I also withdrew from
nicotine, cold turkey. At this stage I started to play 'if I don't, if
I do' bargaining games in my head. This is something that a lot of
people probably do when threatened with an incurable disease. So my
first deal was with myself, with God, with the medical fraternity: if I
give up smoking, my MS won't deteriorate, I won't get any worse. I
played out these scenarios a lot -- bargaining with the uncertainty of
illness, with the ifs and maybes. Bargaining with God. None of them
worked, of course, because I was in a no-win situation. No matter how
good a deal I made, I couldn't change the end result.
As the doctors became more convinced of their diagnosis I began a
grieving process, as if a part of me had died. Even all these years
later I don't think I have completed all the stages of my grieving for
the Anna I once was - it is an ongoing process. When someone dies,
there is a finality. But when someone is diagnosed with a disability
the process of dealing with it is lived and relived, over and over
again throughout that person's life. Acceptance one day, denial the
next - the frustrations and challenges of everyday life are what keep
your mind balancing between crazy and coping.
When I made my decision to leave hospital the doctors and nurses were
not happy about it, but I felt this was the only way I could get
better. I still had the headache, I had barely eaten, and I was unable
to go to the toilet or have a shower unassisted. Standing made me
throw up. All things considered I was not really well enough to be
discharged, but I was completely focussed on the fact that if I could
go home, I could get on with my life. The old pig-headed Anna was
still lurking. Fear of hospital and the pain I was experiencing in
these surroundings made me feel worse. I was certain that I would be
better off at home.
At this stage I had been told the bare minimum about MS by medical
staff as the process of diagnosis had been arrived at only by
elimination. I had been checked for stroke, brain tumours, spinal
tumours, circulation problems and heart malfunction. I didn't have any
of these things so therefore, based on my recent medical history, the
conclusion was that I probably had MS.
One remaining test would confirm this for certain: a magnetic resonance
imaging, or MRI. At the time there were only two MRI machines in
Melbourne - one at St. Vincent's, the other at Royal Melbourne
Hospital - and there would be at least a month's delay until I could
have an MRI. This test would irrevocably tell me whether or not I had
MS. If I wanted to have a definite answer more quickly, I would have
to fly to Sydney. I felt exhausted, deflated and hopeless, but having

to wait a month for an MRI result bought me some much-needed time to

grapple with the consequences of my probable multiple sclerosis, so I
decided to wait.

52 53 I was given the name of the MS Society of Victoria. The staff

at the hospital suggested I get an information pack from them to
explain the implications of MS and the services they provided in more
detail. In many ways I was horrified by this: I gave to charity, I
didn't need their services or support. I pushed the suggestion aside.
It was just too difficult to think about and, to be honest, I was quite
vague from the drugs I'd been taking.
I said goodbye to the women around me, wishing each of them the best.
I realised the irony: they had watched me come in a young, healthy
woman with a slight limp, and now they were watching me leave less than
two weeks later a sickly person, who by then could barely talk, eat,
sleep or walk. But what no one could see was to me the most terrible
thing of all - my spirit had been broken. I had faced countless tests
and hundreds of questions, my back had been prodded, my brain had been
tested, my eyes had been checked, and my limbs had been pinched. Sure,
I would recover from these intrusions in the short-term, but the
probable diagnosis of multiple sclerosis meant accepting major changes
to my future and to the plans Paul and I had made together. MS would
eventually be something from which I couldn't escape, but for the
moment I wouldn't give it that credence -- if I didn't accept it, it
wouldn't exist. But still I felt beaten. Perhaps subconsciously I
knew that one day soon I'd have to face the truth.
Finally, before I left the hospital, a doctor came to give me some
medication to take home. To combat the headache, Panadeine Forte every
four hours until the pain subsided. Then a mammoth supply of
Prednisolone, a steroid, to combat the MS and attempt to reverse my
limp and foot drop. I was told it would also help with the bladder
problems.
54 I didn't question the doctor about the medication and its effects
and I was to take the steroids every day for the next few months,
commencing with high doses and slowly reducing the amount taken each
day until my body was completely weaned off them. And I was to take
anti-spasm drugs to reduce spasticity, hopefully making it easier for
me to walk and lessen the locking effect on my knees.
They gave me bottles of tablets, large pills and smaller ones, and a
sheet of paper with the dosage schedule. I was under strict
instructions to cross off each day until I had finished the complete
course. This was serious medication. With the nurses' help my
belongings were put into a bag, but I left any flowers or gifts with
the other girls -- I didn't wish to take home any reminders of my
experience in the neuroscience ward.
My knight in shining armour duly arrived to take me home. The fact
that Paul was there after all this drama was the most important thing
to me. It's not that I doubted his word, I was just frightened that he
too was suffering from emotional overload, that he might turn and run
away in fear from the unknown enemy that threatened to engulf us. Like
me, Paul was facing the worst scenario he had ever encountered.
Perhaps what was going through my mind was the realisation that if the
situation had been reversed, I may have turned and run away. I doubted
my own strength of character, therefore I doubted his. The difference
between family and your partner, of course, is that family must love
you warts and all, unconditionally - well, that's how my family had

always loved me. But Paul didn't have to stick by me - I'd offered him
his freedom and he'd rejected it. How could he possibly love me as
much as that?

55 But here he was beside my hospital bed, his blue eyes smiling out
of his handsome face, showing his concern. I think if the staff had
let him, Paul would have lifted me from that bed and carried me out of
the hospital. He longed for things to be normal and wanted me home
with him as much as I did. I had lost so much weight he could have
easily scooped me up, but hospital etiquette demanded a wheelchair be
summoned. I crawled into the chair and curled myself up with my head
on the armrest, because it was still too painful for me to lift it up
and face the world. I struggled into the car; Paul had wound the seat
right back so I didn't have to sit upright. I don't remember talking.
We drove home and he held my hand as tears gushed down my face. I
remember Paul saying something positive like, "We can beat this."
Right at that moment I wasn't sure of that. In fact, I wasn't sure of
anything much anymore. I hardly knew who I was or where I was going,
and I had no inkling of the devastating effects that MS would have on
my life in the very near future.
56
CHAPTER 4
And the Camellias Bloomed I came home from hospital in a daze, lying in
bed for most of the week until my headache slowly dissipated. I tried
to make sense of all that had happened to me during the last few weeks,
going over and over what the doctors had said, trying to work out if it
had been real or just an awful nightmare. I kept thinking that this
was the sort of thing that happened to other people, not to me.
Eventually I was well enough to be out of bed for longer periods, but
that meant I had to force myself to face reality rather than continuing
to hide in a dark room as before.
What had happened to me now started to sink in, but with hindsight my
reaction to the situation seems so excessive, because my symptoms then
were inconsequential in comparison to what MS would make me face in the
future. But for now, just knowing that it was probably MS changed the
way * approached things. Those ten days in hospital had made such a

huge impact on how I saw my future, and yet all the doctors could
offer me was the next two weeks off work to get myself well enough to
face the world again and get on with my life. This was hard to
comprehend.
I had lost a huge amount of weight and my strength was depleted, so I
was lucky that I had my family to look after me with never ending cups
of tea and cuddles. When my friends came to talk, there was so much to
say and yet nothing to talk about. The reality was too devastating.
Paul was always there to comfort me when the sense of hopelessness
became all-consuming and I couldn't hold back the tears any longer.
Family and friends rang to check my progress and offer support, but it
was obvious to me that some people had made the decision not to contact
me. To be honest I couldn't let myself be concerned about their
decision or how they were feeling -- it was far more important to work
out how I was feeling. In many ways I felt it was time to reassess my
life, to change my goals and set new boundaries. I had to look after
myself and so other people's reactions were beyond my realm. But I was
honestly surprised by the reaction of some people who until this crisis
I had thought would stick by me in tough times.
There was one work colleague who I had been very close to, for
instance, and yet she never rang me or sent a note or acknowledged in
any way what had happened to me. It seemed our friendship was over
from the moment I was diagnosed with possible MS. I was hurt, of
course, but mostly I was intrigued, because she had worked alongside me
at school teaching students with disabilities, and yet it seemed that
the prospect of my becoming disabled and needing ongoing support was
just too difficult for her to take on board. I can't think of any
other reason for her terminating our friendship 58 so dramatically,
because I certainly don't remember doing anything to offend her.
This was a perplexing side to being diagnosed with supposed MS, but it
only happened with a handful of friends, not my close girlfriends or
family. Dealing with my disability was obviously hard for some people,
but I've often wondered if those who avoided me ever considered what
it's like for the person coping with the disease. In those first few
weeks my headache made me grumpy and my mood was often negative, so
dealing with my probable diagnosis was already an extremely difficult
process -- having to deal with other people's emotional reactions to
the situation made it almost unbearable.
On the other hand, many people made me feel really special. Flowers
came to the house, letters arrived from people I hadn't seen in ages,
and special gifts were delivered with such heartfelt wishes that they
gave me strength. I loved it when people just popped in to say hello.
One afternoon another teacher from my old school, Greenwood Secondary
College, arrived at the front door unannounced. Mum was with me at the
time, fussing in the kitchen, preparing things that might tempt me to
eat, and she showed Helen into the family room at the back of the house
where I was sitting on the couch.
Helen was carrying a huge box along with a bunch of about forty
long-stemmed carnations, which she handed to me with a kiss. Then with
a big smile on her face, but obviously holding back tears, she
explained the background to the gifts. The staff at my old school had

immediately wanted to send flowers after hearing of my situation, but

because I was no longer a teacher there they couldn't automatically
send me gifts from the staff association fund. So Helen had organised

a collection of money for the flowers, but she collected 59 so much

that she could also buy an exquisite crystal vase to display them in.
This was just the medicine I needed. It made me feel okay, for just an
instant, to hear that my former work mates had cared enough to
contribute so generously and for a moment, in the midst of all the
misery, I felt wonderful. My life again seemed worth living, because I
had great people to stand by me.
Paul had continued the normal routine of going to work, because the
bills still had to be paid. He was now working in the marketing
department at Gillette, while also renovating the house and coping with
the garden single-handedly. He was so strong for me -- I don't know
how he coped. Paul is not one to air his problems with others so I
think his frustrations and sadness were dealt with through physical
exertion. I don't know if he ever confided in friends or family; we
just talked to each other and got by.
My mum spent a lot of time with me and kept the household routine
happening: washing, shopping, cooking and cleaning. This was a double
blessing because it meant that I didn't have to worry about them, and
it also gave Mum something concrete to do. We chatted and drank so
much tea we were running to the toilet all the time, and we focussed on
the trivial rather than the pressing issue of what the future held.
Sometimes dealing with the mundane things in life can briefly distract
you from an overwhelmingly difficult situation, which can be positive
in the short-term but ultimately unhealthy in the long run.
There were many reasons why facing up to my initial diagnosis was
almost impossible for me. I was on a roller-coaster 60 ride dealing
with my own emotions, and at the same time I had the difficulty of
telling people who had not already heard my news and then having to
cope with their grief. This was truly awful: I was the victim in this
scenario, and yet I ended up doing the comforting. It was bizarre and
draining.
For example" Virginia my friend from primary school days, came over one
afternoon not knowing about my diagnosis. She was working as a
journalist for The 7.30 Report on ABC television and her work schedule
and production deadlines meant she kept ridiculous hours. She had been
unable to visit me in hospital, and I had not wanted to give her my bad
news over the phone. When she arrived I took her into the front
sitting room, which is more formal than the family room. Mum of course
made a cup of tea, the ultimate cure for all ills in my parents'
household, and as we sat on the couch I could see Virginia was
anticipating the worst.
I held her hand and told her that from a diagnosis of elimination it
would seem that I had multiple sclerosis, although it still had to be
officially confirmed after one more test. Then I had to explain what
that meant, even though I was not really sure of the consequences
myself. The tears started to roll down her cheeks and as I held her
hand tighter I realised that this was one of the most arduous aspects
of my illness. I had known Virginia since we were eight years old: we
had grown up together, we had planned to grow old together as friends
do. Virginia cried, but I didn't, because by this time my tears had
dried up. I tried to comfort her, to stop her pain, because I felt so
responsible for causing it.

She was angry and upset, and in some ways I think she was dealing with
her own mortality for the first time. Nothing like this had ever

happened to our close-knit group of friends, 61 and it was certainly a

shock. We were young, supposedly healthy, still in our twenties - this
sort of thing was not in our plan. When Virginia's tears eventually
stopped and she insisted she was alright to drive home, I breathed a
sigh of relief and vowed never to put myself in that predicament again.
I was exhausted and emotionally drained, and I realised I felt
cheated. That was when I decided that I would put myself first.
Perhaps it sounds selfish, but I could no longer spend my time
comforting other people about a disease that was impacting most
drastically on my life, not theirs. I had to keep myself strong so I
could attempt to tackle my disease and win.
My two weeks off work were drawing to a close, but I still felt lousy.
I went to our GP and was immediately sent back to Dr Peters, my
urologist. I had a urinary tract infection (UTI), not a bad one, but
my symptoms were clear: a temperature, discomfort passing urine, and
minor back pain. This UTI was a result of problems directly associated
with the MS -- I wasn't emptying my bladder completely every time I
went to the toilet which meant that there was a residual left, and this
in turn brewed a bacterial infection.
I sat back and listened to these details with the mindset of: "So, give
me a pill and fix it." But this of course would only be a short-term
way of overcoming the infection. Dr Peters knew the signs of an
ongoing and far more serious situation. He explained that I would have
to learn to empty my bladder completely and the only effective way to
do this was by using a catheter.
My heart started to race: major panic stations. Not that 62 long brown
rubber tube they had used in hospital. Yuck! I wouldn't do that. I
couldn't do that. Questions raced through my head. Did a catheter
have to be in all the time? Could I have sex? How could I wear
bathers? How could Paul ever find me attractive with that tube hanging
out of me?
In shock, I went quiet. Dr Peters said I would have to go back in to
hospital and learn to use a catheter, because it was the only way to
combat the urinary tract infections on a long-term basis. He quietly
and calmly explained that the device I was to use would be
intermittent, that is, inserted daily to empty the bladder completely
and then removed. It would not affect sex, I could still swim and wear
bathers and it would not be permanent. I didn't listen. No, a voice
screamed inside my head, I was ready to go back to work, not back to
hospital. I couldn't make sense of this -- I had only just started to
recover from my last stay and now I had to go back? I couldn't face it
and felt totally drained.
When I got home I rang Paul, who said we would talk it through that
evening. While I waited for him, I packed my pyjamas, my dressing
gown, my medicine, my sadness and my disbelief into a suitcase for my
return to hospital the next morning. When Paul arrived home he took me
in his arms and said the catheter was just a little hurdle, something I
had to learn to use to make my life easier in the long run and put less
strain on my health. That sounded so reasonable, but I still found it
difficult to accept.
I was going to St Vincent's Private Hospital in East Melbourne,

supposedly a luxurious stay compared to the public system I had

experienced previously. I would have a room of nay own, nice meals and
a phone. Paul was amazing - he told that as I would have a phone right

next to my bed, I might 63 as well put it to good use and plan our
wedding! He said it made perfect sense, because I love to organise
things and to talk on the phone. Wow, what a whole new roller-coaster
of emotions I experienced that day. I had spent all afternoon sad and
depressed about the prospect of returning to hospital and now I was
being told to organise a wedding -- our wedding!
Maybe it was unrealistic to plan a wedding at the same time as dealing
with the diagnosis of MS, but it was the best distraction ever. I'm
sure Paul understood how important it was to me that he had made this
commitment, but it also gave me something else to talk about and focus
on, a new goal -- something totally positive and uplifting in which to
involve myself. It pushed the MS to one side to be dealt with later.
The next morning I went into hospital on top of the world. When Paul
and I had talked of marriage previously, we had always hoped we would
celebrate it on the day of our meeting, 8 May. But that year I had
spent our special date in hospital being diagnosed with MS. Paul
insisted that there was no time like the present so we chose a new
date, only six weeks away, 20 July. It was a ridiculously short amount
of time, but the reality was that Paul and I had never felt that time
was so precious. We had always been beach children, people who spent
the year waiting for summer, so it seemed odd for us to get married in
the middle of winter, in the cold. But we had been a couple now for
ten years and it was the right moment for us.
The hospital brought me back to reality - starched white sheets and
stuffy nurses. I felt fairly well when I arrived in the ward because
the antibiotics had started to work and the bladder infection was under
control. I gushed to the staff that I was planning my wedding,
ignoring the reason for my being 64 admitted to hospital. I did not
want to be there. As I began to write out a list of all the things I
had to organise for our special day in July, the nurses arrived to
attempt the first catheterisation. It was an intermittent catheter,
which Dr Peters hoped I would use two or three times a day to regulate
the level of urine retained in my bladder. Everything about this small
clear plastic tube revolted me.
A nurse went through the procedure with me, unwrapping the first
sterile catheter pack. There was an instrument tray, gloves for her to
assist me and gloves for me. But by the time we had finished there
were dark green sterile wraps all over the bed: no matter how many
times I attempted to insert that tube into my urethra, I just couldn't
do it. Then the nurse tried, but she couldn't get a positive result
either. We had to stop because persistence was making me red and sore,
and that could create a new infection.
We'd have a break and I would take the opportunity to ring someone to
help with our wedding plans. Our local parish priest agreed to conduct
the ceremony even though it was at such short notice. The florist
agreed to come to the hospital to show me a folio of her floral
arrangements, and similarly the caterer didn't seem too fazed about
making a time to meet me at St Vincent's. Happily things were falling
into place and against the odds, in the middle of this sterile
environment, a romantic dream was being born.
Then it would be time to attempt the dreaded catheterisation again.

We

tried three or four times that first day. A different nurse would come
to my room to try to assist me with the procedure, and each time she
would leave disappointed.
When family and friends came to visit there was something else to talk

about, other than the infection in my bladder, my 65 MS, which was

still to be confirmed officially, and my inability to master the use of
the catheter. My sisters Elizabeth and Emma rose to the occasion.
They brought lots of bridal magazines for me to look at and together we
made some quick decisions about my dress, which Paul's mother, a
professional bridal dressmaker, offered to sew for me. Everyone
pitched in to make our wedding not only possible in such a short time,
but also as wonderful as it should be, despite my recent probable
diagnosis. We all needed something other than the prospect of my
future disability on which to focus. The wedding was the one positive
in a minefield of negatives.
Again it would be time for me to try and force that thin piece of
tubing inside me to relieve the pressure on my bladder. I hated it.
Looking back I realise that it wasn't just learning how to do this
procedure that was the difficulty. By using the catheter I felt I
would be giving up and giving in to the disease - multiple sclerosis
would have taken over my life and there would be no turning back.
After all, I would tell myself, I hadn't had an official diagnosis yet,
had I?
The various specialists involved in creating our wedding visited me in
hospital. They seemed to take a meeting by a patient's bedside in
their stride, although I think that underneath most of them were a
little shocked at the prospect of a bedridden client organising her own
wedding, but plans for our celebration got underway and happily
occupied my thoughts.
Paul was busy too. His part in the organisation was to finish all the
renovations we had started on our house. The floors were polished, the
garden paved, painting was finished and little details completed. Paul
was working within not only a serious time constraint but a financial
one as well, as we had already overstretched our budget, plus I had not
worked for six weeks and my sick leave payments were fast running
out.
After eight days in hospital I had decided on my wedding dress design,
chosen the flowers for our wedding and ordered the food for our party,
but there were still many things to be organised when I left the ward,
still unsuccessful in using the catheter. It had become too painful
for me to persist in attempting the procedure, so I was given a new
batch of blood pressure medication in the hope that this might reduce
the strain on my bladder. I was sore and needed a rest in my own bed,
away from the medical intrusions of the hospital.
Anyway, I had a wedding to organise. I needed to find someone to play
music during the ceremony and at the party afterwards, so I went to see
Ruth, my friend and teacher from high school. Her father, the late
Ivan Hutchinson, who then worked at a television station as a music
director and movie critic, recommended a harpist who could help create
the medieval atmosphere I was planning.
Jenny, another girlfriend from high school, contacted her brother who
was a nurseryman. We ordered one hundred pots of blooming annuals to
plant in the garden, to fill out the edges of the flowerbeds and give
the garden a lacy border. Jenny and I spent days slowly working our
way around the garden, making each bed weed-free and pretty.

Paul's mum Heather brought lots of material samples to show me, because
she did not want me to be worn out from shopping. Eventually we chose
an ivory silk fabric for my wedding dress and a dark green velvet for
the bodice. The dress was a very romantic peasant costume design, also
with a medieval feel to it.

My sister Libby did the pre-wedding shopping for me 66 67 because I

was still not physically strong. I was also on high doses of
medication, as well as being very conscious of my limp, the cause of
which I didn't want to have to explain anymore. Luckily Libby was so
enthusiastic that she shopped like a woman possessed! She took Paul
out to buy a new suit, shoes and a beautiful shirt. She tried on every
corset that she could in her attempt to find the best one for me to
wear under my wedding dress. One afternoon she picked me up and drove
me to the department store where she had managed to whittle down the
huge array of underwear available to just two different sets. I tried
them on and bought a couple of pieces. Now Heather could start making
my dress.
By some magic and a lot of hard work, things began to fall nicely into
place. As only close family and friends were being invited" Jane had
handwritten every invitation, and now the acceptances rolled in. We
were restricted in numbers because our house would not accommodate a
big party and really, after everything we had been through recently, we
only wanted to share our special day with people we loved and who loved
us in return, not with mere acquaintances. Paul's nieces were to carry
the flowers and our rings. There would be no bridesmaids and no best
man. Our sisters were to witness our special moment and sign our
certificate of marriage.
And all the while, as 20 July came closer, I pushed all thoughts of MS
from my mind. My disease had no place in these preparations and I
acted as though it would never be part of my life.
Then out of nowhere I got another infection. The medication I had been
given was obviously not working and I was faced with hospitalisation
yet again, and the ugly prospect of using the catheter was the issue.
I could not avoid it this time because if I did not learn to use this
ghastly piece of tubing, I would be hounded with infections that would
eventually cause irreparable damage to my kidneys. Reluctantly I
packed my bag once more. It was less than nineteen days to my wedding
and I was in hospital again.
I did not want this. I did not want to learn to use that thing. It
sounds as though I was behaving like a naughty child, a spoilt brat,
but I kept thinking that this was meant to be the happiest time of my
life, the build-up to my wedding. I was in denial and refusing to give
credence to my disease. I would not accept that multiple sclerosis had
a place in my future, either short or long term.
But I tried over and over to use the catheter. My jaundiced impression
was that the nurses who tried to assist me treated my body as if it was
filthy because they followed a fully sterilised procedure each time. I
was frightened to touch myself. My body and the use of the catheter
were discussed as though they had no connection to me, but they failed
to understand that these were all parts of me, not alien objects. In
this uncomfortable environment I just could not relax enough to achieve
a positive result, so again I failed to learn to use the catheter.
When I look back at this time in my life and how difficult things
seemed I laugh, considering the hurdles I have crossed since then. But
at the time, attempting to learn this procedure was the total focus of
nearly three weeks in hospital. It is hard for me to believe.

Heather measured me for my wedding dress while I was lying in the

hospital bed, cutting and then recutting it, because I continued to
lose weight. She made me promise not to get thinner, but I was so

stressed, angry and frightened about the 68 medical side of my life

that even the excitement I felt about my approaching wedding couldn't
counteract my body's persistent weight loss. I continued on a crazy
emotional roller-coaster, wanting to get home healthy enough to make it
through the wedding ceremony and knowing that I was not allowed to go
home until I could use the catheter. I had to accomplish this feat to
stop the infections and win my way out of this medical prison.
Then it was Thursday and I was still in hospital. On Saturday a
luncheon was being held in my honour at a restaurant in Camberwell, a
'hens' afternoon' for the women I was particularly close to, organised
by Emma and Elizabeth. They knew I was not up to a party but they
still wanted a celebration. That Friday afternoon Dr Peters let me go
home because he knew my spirit was in need of looking after as much as
my body, despite being no closer to using the catheter. He reminded me
that mastering its use was inevitable, but that day could be later.
So on Saturday afternoon we girls got together, ignoring everything
medical, ready to enjoy ourselves and have fun. We drank champagne,
ate delicious food and laughed as everyone recounted silly stories
about me -- no sadness, only good times, memories and laughter, and
happy anticipation of the wedding. My mum and sisters were there, my
aunties, Paul's sisters, family and my friends from school. All of
them came armed with a photograph of me from the past and a happy
memory to share. It was a gorgeous afternoon. I finally went home to
bed exhausted but content, cocooned by the love and friendship of these
wonderful women who were so important in my life.
The next two weeks were a hive of organisation: finishing 70 off the
cake, perfecting the garden and preparing some of the food, although
the rest would arrive on the day with staff, glasses and drinks. On
the Friday before, friends and family arrived to clean "Green Gables',
our newly renovated house, although two rooms remained in their
original state. The dining room had ugly orange and yellow wallpaper,
and the lounge room had brown carpet and paint generously peeling off
the walls, but we cleaned till everything shone and only noticed later
in photos just how ghastly those two front rooms really looked.
On the eve of our wedding day, my friend Giuliana stayed overnight to
look after the house and our new dog, Spud, a cross-bred orphan from
the local animal shelter. Paul went to stay at his sister Jenny's
house and I stayed at Mum and Dad's. I was exhausted from having
worked long hours to get the house looking its best. The florist had
been and the flowers were so beautiful that the house smelled like an
enchanted garden. We had moved furniture to make room for our guests
and the garden was in full winter bloom, with a sprinkling of white
annuals in all the flowerbeds. My beautiful camellia bushes in the
front garden had recently bloomed so the entrance to our house was a
splash of glorious bright pink flowers. For a wedding in winter, our
garden was a triumphant flourish of colour.
Meanwhile, in sharp contrast to my house and garden, I looked dreadful.
Elizabeth and Emma remember this more clearly than I do, but there are
photographs to support their memories. I had been working hard so I
was physically exhausted, but the fact was that I had taken far too
much medication to even hope my complexion might be clear for the day.

And of course I had spent far too long worrying 71 about my failure to
use a catheter, as well as having been hospitalised for three out of
the last six weeks of wedding preparation time. This all added up to
mean that I fell far short of the image I had in my mind of being
Paul's beautiful bride.
My hair was lifeless and my skin was dry and patchy. There were bags
under my eyes, I was thin and my clothes hung off me. Elizabeth and
Emma had been entrusted with the responsibility of making me look
beautiful the next day, but after I had gone to bed that night they
commented to each other on how bad I actually looked, not that they
dared tell me. It seemed that only an overnight miracle could
resurrect my failing looks.
I slept so well that Elizabeth had to wake me up in the morning. Our
dear dad had been up early to have a shower -- probably at about five
in the morning -- so he would not be in the way of all his girls as
they prepared for this special day. He was beaming with pride all
morning because he loved having us under one roof again, just like when
we were kids. Jane had arrived early with her two-year-old daughter,
Alex. We sat around in our dressing gowns, played word games, drank
tea and ate croissants, thanks to Mum who had also been up early and
gone to collect them from the bakery.
My sisters say God smiled on me that day because when I got up in the
morning my face was clear and radiant. After a good wash my hair shone
with its former lustre and, best of all, I had little or no limp
compared with what I had contended with in previous days -- a miracle
indeed. Rather than entrust the job to professionals, I wanted the
girls to do my hair and make-up, so my wonderful sisters went to work.
Emma had played with my hair since she was little, so she knew better
than anyone how to make it look its best, and 72 what she created was
like a cascade of natural sun-kissed curls. Libby painted and
re-painted my face, then spent ages blending subtle shades until I once
again looked young, healthy and completely natural. Perhaps it seems
odd to work so hard to create the appearance of being well when that
was far from the truth, but the result evidenced by our wedding photos
is a very precious reminder of who I was before MS took total hold of
my life.
Until the morning of the wedding Mum had not seen my dress, and when I
finally got dressed, Mum cried -- not just the normal proud and happy
tears of the mother of the bride, but tears that expressed her relief
and her multilayered emotions as the mother of a young woman with MS on
her wedding day. Mum did not look good. She looked smart in her
outfit, of course, but over the previous weeks she had lost a huge
amount of weight herself through sheer empathy and just plain worry.
She looked tired and gaunt.
Mark, Elizabeth's then boyfriend and now husband, arrived to take Mum,
Dad and me to my house in his dad's Mercedes, which he had cleaned
until it sparkled. I was a little nervous by then, and perhaps I was
secretly a bit anxious about whether Paul would actually marry me after
all, but I kept reassuring myself that Paul did love me or he would
never have suggested the wedding. I knew that I absolutely adored him
and wanted him to be with me forever. Ten years earlier when I had
first laid eyes on Paul, I had thought he was physically gorgeous. Now

it was about so much more than how he looked. We had grown up together
and, unlike some couples, we had learnt to not only appreciate each
other's differences but to enjoy them, and to share so much in all
aspects of life.

the bride's car arrived early for the ceremony because 73 of my

irrational but niggling fear that Paul might not be there, and I wanted
that uncertainty gone. And there he was, leaning up against the
fireplace looking so handsome in his new suit that my heart jumped. I
wanted to cry with relief and pleasure just soaking in that beautiful
smile but I was still vain enough not to want my make-up to run, so no
tears, just huge smiles all round. We had some photographs taken and
then the guests started to arrive.
Paul and I were married on the steps leading up to our garden. It was
a cold winter's day, but the sun beat down on the two of us as though
it was the middle of summer. Libby commented later that although the
guests were all in the shade it was as though God was smiling on Paul
and I, lighting the two of us up with a special shaft of sunlight that
was like a spotlight, just for us. Paul stood on the lower step and I
stood on the higher one. He had thought of this because he believed
that we should be married on equal footing, looking straight into each
other's eyes. Paul is much taller than me, a good foot taller, so I
had spent the last ten years looking up at him. But Paul had his way
and we were married eye to eye.
Saying vows that we wrote for each other, we became husband and wife.
We kissed on cue and then we held each other, and it was not just a
loving hug. We held each other for so long it was as if we exchanged
energy, melting into each other's being, and for a moment there were
just the two of us. With this embrace Paul committed himself to me
forever, and it made me feel strong, as though I shared his stamina.
Our families and friends cried with happiness, like most people do at
weddings, but of course at this wedding there were a whole lot of other
emotions being dealt with along with the joy. There was an almost
audible relief that we had 74 made it to the day, that I was out of
hospital and physically well enough to stand on the step next to Paul.
For me the relief I felt was that Paul had stood by me -- he hadn't
turned and run away.
The wedding party was exhausted. We had all worked so hard to make the
celebration beautiful: the gardening, the cleaning, the renovations,
the food, the clothes, the rushing to meet our self-imposed deadline.
And the memories were also strong. Paul and I had known each other for
a long time. We were teenage sweethearts, we had grown up together.
He had been a part of my family and a part of Elizabeth and Emma's
growing up. Finally we had made the ultimate commitment to each other,
despite the most adverse conditions.
With the formal part of the day over, we launched into the afternoon
tea: champagne and platters of decadent food. I can't remember
actually eating or drinking anything, I suppose I was high on the
moment. As Paul and I danced a sort of a bridal waltz at our family's
insistence, he stood on the back of my wedding dress and ripped part of
the skirt off. It didn't matter. Libby did a quick repair with lots
of safety pins and no one seemed to notice it wasn't perfect. We all
just laughed. In fact, we laughed and joked the entire afternoon
away.
As the day turned to evening, some of the older guests went home and
then the silliness began. Emma had collected a series of tapes filled

with music from the past ten years, as well as a few classics. The
biggest hit of the night was "Summer Loving' from the movie Grease: all
the boys stood at one end of the room and the girls at the other, with
each group singing their appropriate parts. We had grown up with this
music and all our inhibitions disappeared as we enjoyed the
lighthearted moment.

75 Eventually the night came to an end for me. Only a few people had
left, but I was totally exhausted and needed to rest. Paul surprised
me by booking a suite in a motel not far from our house -- the only
honeymoon we could have at that stage. Libby and Emma threw a change
of clothes, a nightie and some toiletries into a paper carrier bag for
me to take. This was such a lovely surprise because we had not planned
to stay away from home, but Paul had thought it through and knew I
would be exhausted and would eventually need to collapse. And of
course, being a party girl, I would never have gone to bed at home
while there were still guests present. So we left everyone to party
on, telling them to let themselves out when the party finally
finished.
Mark drove us to the motel. The room was lovely with a spa, a huge
oversized bed, chilled champagne, flowers and chocolates. Excitedly we
filled the spa with bubbles, but we never got in. We emptied the
mini-bar of soft drinks to quench our parched throats, threw clothes
all over the room and made love as husband and wife. It was fun and
frivolous and makes me smile even now when I think about how happy we
were on our wedding night.
The next morning we woke happy and content, but in our haste to leave
the party neither of us had thought about the next day. Paul had no
wallet and the girls had not packed my purse. Thankfully Paul had
given his credit card details in advance to pay for the room and
drinks, but we could not buy breakfast or get a taxi so we decided to
head home on foot. We threw our wedding clothes into the carry bag and
Paul slung my wedding dress over his shoulder as we walked home,
laughing and chatting about how much fun we had had the previous day
and night.
76
CHAPTER 5
United We Stand Paul had an information pack sent from the MS Society.
I suspected he had read it, but I didn't ask because I couldn't bear to
myself. In all honesty, I refused to acknowledge its presence in our
house. It was like the business with the catheter - I felt that if I
gave in to my curiosity, I would also be giving in to the disease. I
moved the red folder out of sight. Out of sight, out of mind. I moved
it from place to place, from room to room, from the kitchen bench to
the coffee table and back again. I was obsessed with ignoring it.
Infantile as it may seem, at the time it seemed possible to me that if
I ignored the MS, it wouldn't be true. After all, I still had not been
officially diagnosed. When I look back at all the avoidance games I
played they seem silly, but they were also an important part of the
process of acceptance. Now I realise that what I feared about the red
folder was that the ^formation contained in it would open the window of
time and show me the future like a crystal ball, and my recent 77

experience with the medical fraternity had taught me to fear the

future.
Eventually I did open that red folder, an information pack full of
coloured pamphlets and photocopied sheets. It contained the names of
support groups and services available to people with MS and gave
succinct information on the disease. I held each sheet with just the
ends of my fingertips, frightened to touch the pages. Another
illogical thought possessed me - if I held on to those pages properly,
then what was said on the sheets would somehow come off and get me.
There was a lot to absorb in the pamphlets. It seemed that I was a
typical example of an MS sufferer: most people are diagnosed in their
mid twenties to thirties, more women are found to contract MS symptoms
than men, the majority of sufferers have fair skin tones and a lot have
blue eyes and light or blonde hair. And for some strange reason, the
further a person lives from the equator the higher the chance they have
of developing multiple sclerosis. I was a prime candidate, but why
me?
I cried. There were no happy endings in these stories, the outcomes
were all bad. People's minds, bodies and souls were at the mercy of
this insidious disease. There was information for people whose
partners had left them. A support group for kids whose parents
suffered from this disease. There was information on incontinence
products. Notes on dealing with depression. There were addresses for
day centres and respite care for people who were so handicapped that
they needed part-time or full-time care. I remember the vomit sliding
up into my throat - what I was reading made me physically sick. How
could this horrid disease and its consequences have anything to do with
me? Wheelchairs and daycare facilities were not part of my life. How
could they possibly play a part in my future?
78 As newlyweds, Paul and I had no family of our own yet, but we hoped
that sometime a baby would be a reality. How would a baby fit into the
gloom and doom proclaimed here? We had barely finished the renovations
on our house, would we now have to consider adding ramp access and a
hoist for the shower? I was twenty-eight years old and had my whole
future ahead of me -- I did not want this type of life. I put the red
folder away.
Ignoring my reluctance to become involved, Paul made arrangements for
us to attend a meeting at the MS Society centre in Camberwell. It was
a 'newly diagnosed' day held to support people in the early stages of
the disease. I walked into the centre and went quiet, not at all
normal for me. Usually if I was frightened or upset I would talk too
much, gush and make irrelevant conversation: whistle a happy tune and
no one will know you're afraid. But not this time - I went mute. The
centre had total wheelchair access, with disabled toilets. Everything
about it yelled 'disabled' at me - the basket weaving in the day room,
the counselling room, a room for rests. I was petrified.
I held Paul's hand and he stayed close to me while the staff talked to
us all, describing the diverse ways MS could affect individuals. Some
would slowly and steadily deteriorate until they were completely
disabled, whether by quadraplegia, paraplegia, blindness or cognitive
problems. Others would be plagued with attacks that would cause

hospitalisation for lengthy periods of time, and for some it could mean
living life so tired that you couldn't function - being unable to stay
awake for any length of time, let alone hold down a job, drive, look
after a family or function within a relationship. There was no light

at the end of the tunnel, or that's how it appeared 79 to me.

Everything they told us seemed to be bad news, then more bad news.
Fatigue, heat depletion, depression, incontinence, no longer being able
to work -- this was the gruesome picture being painted. They pointed
out how marriages could so easily buckle under the strain of MS, not
really what newlyweds wanted to hear.
The meeting continued with more opinions and points of view from nurses
and doctors. As the day wore on I felt emotionally and mentally
exhausted, depleted once again of the will to keep going. I was angry
that not one person had anything positive to say to me. I needed a
glimmer of hope, as did Paul and those around us who were people with
MS or family members. Perhaps it was a good experience for others
there, but it was absolutely the wrong thing for me at the time. I had
nothing positive to cling to.
After a short lunch break they divided us into groups, the haves and
the have-nots -- those of us with the disease in one room, partners and
families in another - to talk and share experiences. With Paul, my
tower of strength, gone I became frightened and defensive. People
started to pour out their fears, sharing their physical and emotional
reactions to the diagnosis, and these became the focus of conversation
for the afternoon session.
I seemed to be the youngest there and I felt I didn't need this
outpouring of emotions and denial. I needed support but, because there
was none to be had, ended up giving support to others. For weeks I had
been nurtured and looked after, but now my training as teacher and
carer came to the surface. One woman complained she wouldn't be able
to drive her car any more, or put on her make-up because her eyesight
had been so badly affected. Another lamented about having 80 children,
because now her teenage kids would see her as frail and disabled -- not
the woman she wanted to be for them. One man said he would have to
look for new employment because he could no longer work in his trade.
Through all this I listened and from somewhere deep inside me I was
able to offer support to these total strangers, people with fears just
like mine. I told them that no one could predict the future and not to
anticipate what was or was not going to happen. I held one woman's
hand as she cried.
I left that meeting vowing never to go back -- there was nothing on
offer for me here. I could not lament my children's birth, because I
had not had a baby yet. For me to change career would be crazy: I had
only been working as a teacher for a few years and had spent all those
years training, so I was not ready to give it up. Our marriage was
brand new and we had only just started to build a life together, so I
could not conceive of breaking up with Paul. The entire day at the MS
Society centre had been beyond my understanding. I could not imagine
my life being affected in any of the ways that had been spoken about.
Paul felt the same as me, as if he had spent the day holding other
people together. So, based on that one less than favourable
experience, we figured that the MS Society had little to offer us and
that the only way we were going to survive this disease was to do it on
our own.
Not long after that I woke up one night and, to my absolute horror, I
could not go to the toilet. Last time this had happened I ended up in

hospital. I was not going back there, so I decided it was time to

learn to use the catheter on my own. This time there were no sterile

sheets, no nurse to 81 help, and no one to give advice. Recently I

had been to see Dr Peters and he had asked another patient in the
waiting room to talk to me about self-catheterisation. Her advice was
no fuss: your germs are yours, don't be frightened of your own body
and, most importantly, stand up when trying to insert the catheter and
let gravity help.
So that night, as my bladder became distended and more painful, the
urgency was so intense that I sat on the bathroom floor and cried. If
I couldn't do this it was back to hospital. Take a deep breath,
remember the sensible advice and keep trying. Suddenly, with absolute
ease, the catheter slipped in. I remember the moment clearly -- I was
so relieved that I laughed out loud, although I had been crying only
moments before. Paul had been waiting on the other side of the
bathroom door ready to take me to hospital, and at first he couldn't
work out what was going on. We were both elated.
The next day I rang Dr Peters who then gave me instructions to go
through this procedure of self-catheterisation twice a day, and from
that moment on it has been part of my daily routine. I call it 'doing
my stuff', and every morning and each night before I go to sleep, I
manually empty my bladder by inserting the catheter, which I keep in
the bathroom drawer. For me it is the same routine as cleaning my
teeth. Looking back now I realise it was just a medical procedure that
I had to learn, like diabetics giving themselves insulin injections
twice a day, but it was an emotional hurdle that I had to jump as much
as a physical one.
After two and a half months off work I finally went back to face my
colleagues and students. I told the staff of my 82 probable diagnosis,
but not the students - I figured I had enough problems to deal with let
alone handling questions from the kids. I kept quiet about my MS, did
my work as best I could and tried to keep a normal routine going. I
had a full teaching load and part of my responsibility was to direct
the year eleven play. I still had a terrible limp and my bladder
problems were a continual concern to me. The idea of losing bladder
control in front of an entire class of students terrified me. I kept
going, giving my all and trying not to succumb to the physical and
mental implications of having MS.
It was only after I'd been back at work for about a month that I was
finally, irrevocably diagnosed with multiple sclerosis. Up until then
it had just been what the doctors called a 'diagnosis by elimination',
and though I had assumed from the available evidence that I had MS,
there had still been no official medical pronouncement.
At long last I went to have an MRI at St Vincent's Public Hospital, and
this would be the final cog to drop into place and make the diagnosis
of MS absolutely certain. Dr Susan Mathers, whom I had first met at
the Monash Medical Centre, was in charge of the MRI, which was a scary
machine not unlike a cocoon that enclosed my entire body. The results
of the MRI were as expected, and she reported that everything that she
and her colleagues had surmised over recent months was true: I
officially had multiple sclerosis. There it was. In some ways it was
good, because the uncertainty was at last removed. I just had to get
on with my life.

Back at work again, I finally started to settle down, but I couldn't

relax because my body was in such a mess from all the drugs I was
taking. I had anti-spasm drugs, ones for blood pressure, antibiotics

to fight off the threat of UTIs, Panadeine 83 Forte for general pain,
Stemetil for nausea, and steroids to reduce inflammation of the myelin
sheaths. I have since learned from bitter experience that no matter
how beneficial the initial result from taking a drug, it will create
some sort of unexpected, adverse effect. Painkillers made me
constipated. Too many antibiotics killed off my good bacteria as well
as the bad so I ended up with oral, gut and vaginal thrush. Large
doses of steroids gave me chronic insomnia. The whole cocktail of
different prescription medications made me nauseous and ultimately
miserable company.
Eventually, I went to a GP I saw at the time on an irregular basis for
some advice on how to get things under control. The first thing he did
was write out another prescription for anti-nausea drugs! I came home
and threw that in the rubbish and decided then that it was time to take
control of my own health. But multiple sclerosis was something I would
have to face for the rest of my life, and I knew I hadn't got over the
shock of the official diagnosis, so how could I get on with my life? I
realised that it was not the big picture that concerned me now but
rather the fact that I needed some strategies to enable me to get from
one day to the next. The one thing I knew for sure was that I could
not go on living the way I was -- I definitely needed help.
My friend Jacqui was married to a psychologist, Nick, so I asked him
around to talk about the mess I was in. I was sleeping only two to
three hours a night, not eating much because I had no appetite and so
still losing weight, plus I felt out of control and frustrated by my
inability to deal with it. Unlike lots of the other doctors I had
visited, Nick had concrete suggestions for me and as soon as he and
Jacqui left that day, I put them into practice.
84
The first thing I tried to do was combat my chronic insomnia. I was no
longer allowed to reward myself for staying awake. Bed was for
sleeping or being with Paul, not reading, talking, eating or watching
TV. Nick's advice was that if I couldn't sleep, I had to get up and do
something horrible. Paul says that during this time our kitchen was
always spotless and the bathroom had never been cleaner, the dishes
were always done and there were no problems about the bills being paid
on time. Even the ironing was kept up to date!
I had to eat, work, sleep and keep the same daily routine. Nick's plan
was that I get my body clock back into shape -- no alcohol at all, no
caffeine drinks near bedtime, and no food eaten out of routine to break
the pattern. Normal life meant a normal routine, so I needed to teach
my body to listen to its inner rhythm. I had to get up in the morning
and eat breakfast, do my normal activities and then have lunch at a set
time, followed by the afternoon's activities, then dinner and bed at
the same time every night. Nick suggested that it would be best if
this pattern did not change.
Nick's other brilliant piece of advice was that I must allow myself
time to feel sad, not indulgently, but to allow myself to grieve. Up
until this point I had let my misery take control of the daily routine
of my life, but I had not tried to work through it. Nick suggested
that it might be more productive if I were to take control of my anger

and indulge in a period of bitter tears for a set time. I was to give
myself thirty minutes each day to feel absolutely miserable, and to cry
solidly for ten minutes. But the strict rule of this self-absorption
was that after this period of sadness I had to get on with my routine
for the day.
I decided it seemed most sensible and efficient to cry in the shower
each morning, big, gut-wrenching tears to get it out of my system
before I started the day. The funny thing was that no matter how hard
I tried, I could not cry for that substantial amount of time. It wore
me out. But it was such a good strategy because at least I learned
what a waste of energy being sad all day was, holding back the tears
and always being on the brink of a flood any time, anywhere. Better to
have a damn good sook then get on with life.
Since then, I have tried to keep these ideas and strategies in my life.
It wasn't always simple, of course, but over time it has become
easier. At first, I learned to sleep a little more, without the use of
sedatives, but eventually I learned that the main reason for my lack of
sleep was the large-dose steroids prescribed to me. Steroids put an
unnatural amount of adrenaline into your system, which basically hypes
you up and makes it very difficult to keep a healthy routine, let alone
sleep. But no doctor ever told me this and I was furious when I did
find out about the role of steroids in my lack of sleep.
Over time I have learned that doctors seldom disclose side effects
unless specifically asked, so it's the patient's responsibility to keep
on top of these. These days I can be much more assertive in the
presence of the medical profession, asking about all possible side
effects and how one medication will affect another. I still use a lot
of what Nick taught me in my day-to-day life - having a routine is
important, and so is time out to feel sad. Whenever I have problems I
go back to those core rules. Sleep, eat and get the pattern back. If
anybody I know is having a hard time dealing with things, physical,
intellectual or emotional, I advise them to go and see a professional,
a person who does not have a vested interest, 86 someone who can be
completely objective. I learned from my experience that you can take
whatever you need from their knowledge and they can teach you skills
that empower you to deal with your own circumstances and get on with
life.
I saw out the year at work; as far as my MS was concerned, things had
settled down and stayed fairly stable. Paul and I finally had the
honeymoon we could not have back in July -a fortnight in a unit at
Ocean Grove, our favourite beach holiday spot. It was just heavenly.
Paul went surfing and I lay on the sand, reading and rejuvenating my
energy levels. Lots of our friends and family came to visit and sleep
over. We cooked lobsters and did crossword puzzles. We didn't rush or
have any reason to be stressed, we just sat in the sunlight, walked on
the beach and watched sunsets over a glass of wine. We also worked
energetically on getting me pregnant.
When I was initially diagnosed with probable MS, one of the most
important questions that Paul and I asked was whether we would be able
to have a family. In the months leading up to that initial diagnosis
we had talked of marriage and perhaps one day having children, but a
baby had not been too high on our list of what we would like to achieve

in our relationship until we were faced with a disease that would

affect my health for the rest of my life. Family suddenly became an
absolute priority and we asked the medical fraternity lots of
questions. Could I have a baby? How would MS affect a baby? Would my
having a baby affect my MS? Could a baby inherit the disease? On all
counts the professional response was that there was a lack of reliable
information. They just did not know, but the general opinion seemed to

87 be that if we did wish to have children then we should not put it

off. The only definite information we gleaned was that MS often goes
into remission during pregnancy but then flares dramatically after the
baby is born, so the younger I was when I had a baby the better off we
both would be.
Since we had been married, Paul and I had not used contraception in the
hope that I would fall pregnant, but by the time we headed off to our
belated Ocean Grove honeymoon I still wasn't. I was sure this was
because I was so stressed by a combination of my work and the
diagnosis. Paul had a fairly high-pressure job too, so I blamed all
these as contributing factors. Of course it had only been six months
since we were married, not a long time in the normal scheme of things,
but I now had such an urgency in my approach to everything in my life
that I could not stop worrying that time was against us having a baby.
All these years later this sense of urgency is the one thing I have not
overcome -- I still approach everything in my life as though there will
be no tomorrow.
Some weeks after we got home from Ocean Grove I took stock of things
that were happening to my body -- my period was late and my breasts
hurt. The penny finally dropped and I mentioned my suspicions to Paul,
who went straight out and bought a home pregnancy test kit. I followed
the instructions on the packet and left the tube in the bathroom, too
nervous to wait for the results. Paul went in two minutes later and
came out holding the tube, with a big smile on his face. I was
pregnant. We had left Ocean Grove with me carrying our baby in my
womb. The magic had happened for us in that relaxed and happy place by
the beach, with saltwater sticking to our skin -- the most appropriate
place for two sun-worshipping beach lovers to conceive their baby.
So now that we were expecting we had to find a sympathetic doctor, one
who would have a sense of MS as well as the specialist skills to deal
with an exceptional pregnancy. I spoke to my GP first and then rang Dr
Peters to ask his advice, and as a result of those conversations I
found Dr Yeoh, an obstetrician. Thankfully Paul and I had private
health insurance so we had a choice about who would care for the baby
and me Dr Yeoh seemed sympathetic to my needs and was also very willing
to listen to the fears I had because of the MS. The most important
thing for me was collaboration. If necessary I wanted the doctors
involved in my life to talk to each other as well as to me. I knew
that my neurologist would not be very happy about my being pregnant -even though other neurologists at the hospital had been quite
supportive of the idea, she considered that my having a baby was
tempting fate, so I was not expecting help from her. But so long as I
could get communication going between Dr Peters, Dr Yeoh and my local
GP, I felt my pregnancy would proceed in the best possible hands.
Paul and I didn't tell anyone about my pregnancy except our parents
until we were through those first crucial months. Our parents were
very happy for us, although I am sure they had some fears that were
never spoken. When we later announced our news to friends and family,
it amazed me that while most people were happy, others were shocked,
and some people even openly questioned the sense of it considering my
situation. How dare they? This was our decision and no one had the
right to question it. Our close friends and family knew how important

being pregnant was to us, so they were full of 89 positive words and
advice. We felt we had been sensible about all aspects of having a
baby, because at the time there was no information to suggest that MS
was an inherited disease, so we assumed our baby would be safe.
(Evidence now suggests that children of MS sufferers have a slightly
higher chance of inheriting the disease, but the odds are still in
favour of having children over not having them.) We were young and
enthusiastic and we wanted to be more than just a couple - we wanted to
be a family.
But this didn't stop some people sharing their 'friend of a friend'
stories, advice or ghastly warnings when I told them I had MS and was
pregnant. More than one person suggested I have an abortion, people I
hardly knew: a nurse at the hospital, later a teacher at school, even
the receptionist at our local clinic. As if it were anyone's business
but ours. I soon learned to keep the information to myself, although
like any young expectant mother I was dying to tell everyone I met.
But for some time I didn't tell anyone at work. I maintained my
full-time job and kept myself as healthy as possible.
I had the same problems as many women, but my 'morning' sickness
consumed my evenings while early in the day I was fine. Paul would
come home from work and there I would be, snuggled up next to the
toilet with a rolled up towel supporting my head. I had to eat hearty
breakfasts and substantial lunches because I could not face the evening
meal. I had odd cravings, like you hear about in movies, including
olives, black currant juice and dim sims. My MS did not seem to change
dramatically as a result of the pregnancy, I just seemed to continue to
deteriorate at a slow pace over the coming months. I stayed
unmedicated and hoped for a trouble free pregnancy.
I hid my pregnancy for months at school. After having had so much time
off during the diagnosis of my MS, I thought the staff would be angry
to hear I was going to be taking leave again. I had been so thin after
being in hospital that it was easy to gain a little weight without
people becoming suspicious. I guess they just thought I looked a
little healthier. I saw the specialists after school hours and kept
working full-time. The pregnancy was progressing well but what worried
me was that my gait was worsening, so much so that I felt unsafe
walking down the centre of the school corridor. The bright, confident
person I had been began to slip away as I timidly hugged the walls for
support.
I bought a pair of size 12 jeans and continued to hide my fat tummy. I
was six and a half months pregnant and still no one at work knew. But
then one day, as I walked along the corridor at school during a busy
changeover between classes, I was accidentally knocked down by a group
of students bumping into me as they rushed past. I sat on the floor
for a moment, terrified that the baby had been hurt. Then I went
straight to the phone, spoke to Dr Yeoh and organised to see him that
evening.
He was honest and quick to discuss all the options with me. The main
thing he stressed was that the MS made this pregnancy quite
unpredictable. He suggested that I should finish up at work earlier
than I normally would have expected to. Paul and I agreed that
whatever money a few extra weeks work would bring in did not outweigh

my health or the baby's, so the next day I went to speak to our school
principal and gave two weeks notice. I told the staff, who were very
surprised, and then I went to tell my students. Their reaction was

gorgeous -- they made it quite plain that they did not 90 91 want to
lose me as a teacher, but the information that I was pregnant and also
had multiple sclerosis was a lot to digest in one afternoon. One year
eleven boy seemed to speak for a few of the students when he said he
was relieved to find out I was pregnant, because they thought I had
chub bed up' a lot recently!
Once I had finished work, there was very little for me to do except sit
around and get bigger. I still had ten weeks of my pregnancy left, and
there was only so much nesting a girl could do. The nursery was
finished and the crib suitably attired. Lots of gifts had already
arrived and been settled in the nursery. Paul's mum Heather and my mum
had knitted, sewn and shopped in a frenzy, making sure their grandchild
was going to be adequately clothed. There was nothing left for me to
do but contentedly grow our baby to full term.
Paul was travelling within Victoria as a representative for Gillette.
I went with him on a couple of country trips, and as he paid his calls
on newsagents around the state, I sat in the car and knitted baby
clothes. At night we slept in hotels and then in the morning we were
up and off across the countryside. It was a happy time for us. Each
day we talked non-stop about our hopes and anxieties, anticipating good
and bad times ahead, as well as discussing baby names. Eventually
though, I got too big to sit in the car comfortably for long periods of
time, so I stayed home.
One morning after Paul had gone off to Warrnambool for a couple of
nights, I woke up feeling dreadful. I was in my seventh month and had
not felt this bad throughout my entire pregnancy. Tired, listless and
very uncomfortable, I waited out 92 the morning, hoping I would feel
better. Eventually I rang Mum, who gave me some comfort over the phone
and then sent Libby and Mark over to check on me. I was in bed,
feverish and too ill to make sense of the situation, but I asked them
to get me to a doctor. By the time I was in the car outside the
doctor's surgery, they had made the decision to take me straight to
hospital. I was shaking violently, my teeth were chattering and I was
sweating uncontrollably despite feeling cold.
We went straight into Emergency and I was forwarded on to the maternity
ward. I became aware that this was not a normal situation and by the
look on the nurses' faces, I figured things were bad. All the staff
were anxious and a little flustered. They tried to calm me down, but I
was totally freaked out because Paul was away and this was no longer
just about me -- this was now about our unborn baby, and I feared for
the baby's sake as much as I did my own. Doctors came from everywhere.
Paul was summoned, but he was four hours drive away. I suspect he
broke many speed limits on his way back because when he arrived at the
hospital it seemed like no time at all.
I couldn't work out what was happening because it was difficult to
concentrate through the waves of temperatures I was experiencing, but I
was very frightened. I could not be given medication because it would
cross the placenta and hurt the baby. Staff strapped a baby heart rate
monitor around my bloated waistline. I nervously watched the indicator
race then relax as the baby struggled with the excessive heat within my
body. The baby's heart was working overtime to cope with the high
temperatures and I wore that monitor day and night until the infection

I was suffering finally abated.

The doctors decided that I had another urinary tract infection and that
my kidneys were swollen and tender. This is quite common in pregnant
women, but because of my history with these infections, plus the
complication of MS and my inability to detect the symptoms early enough
due to reduced sensitivity, the situation was not good. I was
prescribed an oral antibiotic that the doctors assured me would not
harm the baby, but would knock the infection within 24 hours.
When Paul arrived he smiled and tried to calm me, but his eyes gave him
away and I could tell he was worried for both the baby and me. No
matter how brave and in control he tried to appear, he could not hide
his fear from me. He slept in a reclining chair by my bed that night,
waiting, praying and hoping that the illness would get better without
any permanent detriment to the baby or me.
But this insidious bug that had invaded my body was getting stronger
and my unborn child's well-being was in jeopardy. I was vague. My
body was convulsing under the pressure of such extreme heat with little
or no immune system to fight it. I was conscious while I experienced
episodes of fitting through temperatures over 41 degrees Celsius. I
cried and then whimpered as the waves subsided; I started to vomit and
have diarrhoea. This continued all night and into the next day. A
nurse stayed with me constantly. She cleaned my face, and helped me on
and off the pan. I was so depleted that half the time I didn't make it
to the pan, so she cleaned me up and at the same time she cooed words
to diminish my embarrassment. Very weak and knowing things were
getting worse, I kept saying how sorry I was to be causing so much
trouble.
The doctors were called again, but they were not sure what 94 to try.
I was losing hope and I lacked the strength to keep fighting. I told
them to do an emergency caesarean and take the baby while it was still
alive -- it didn't matter about me any more. I was exhausted and had
lost the will to live. Paul was holding my hand, telling me stories
and reflecting on moments from the past, trying to distract me from my
pain and fear. Mum, Dad and Elizabeth had come to give us support.
When they spoke to me they were positive and uplifting. Luckily I
didn't know that when they left my bedside, my parents stood in the
corridor and cried. They held each other not knowing what to do or
say, their daughter so desperately ill and their grandchild fighting
for survival.
Something drastic had to be done and quickly. I was given a change of
antibiotic and an intravenous drip was put into my arm to stop the
dehydration, but because of the baby there could be neither painkillers
nor any anti-nausea medication - and there was still no end in sight to
this horror. I was vaguely aware of the staff encouraging me to hang
in there and focus on the baby's heartbeat. And still the doctors
tried new tacks. I was given a cocktail of different antibiotics to
attempt to reverse the infection. They slowly pumped the drugs into my
bloodstream and over the next two days I started to feel better. The
temperatures started to abate, but my body began to swell -- I blew up
like a puffer fish. My body had been so overloaded with the drugs
pumped in steadily by the IV that my body tissues had been saturated.
The doctors sent me to X-ray. I had had a partial kidney failure

because they couldn't cope with the strain. The infection was under
control and my body would recover, but it was going to be a slow
process. I had gained ten kilos in the last five days and yet I had
barely eaten.

95 Once the IV was taken out, my system slowly recovered. I had been
through the wringer and I joked that my baby had been to the Bahamas.
But it had been a rough patch. My body was in terrible condition and I
was nowhere near healthy enough to deliver my baby. I was seriously
depleted of key nutrients, protein, salts and potassium, yet, after ten
of the scariest days I have ever experienced, I was allowed to go home.
The doctors hoped that at home I could eat the right food, rest and
rebuild my stamina, because that was what I needed to do to help this
baby into the world around its due date. For the rest of the pregnancy
I had to stay on a low-dose antibiotic to aid this process and, to this
day, I am still on that same medication in a bid to hold off
infections. The doctors' instructions were to stay calm, try to eat
well, relax and pray that these simple strategies would hold off any
more complications so I could deliver my baby and not get sick in the
meantime. That felt like a tall order.
In typical style, my sisters Elizabeth and Emma looked at my homecoming
as a time to celebrate. They organised a baby shower, with pink and
blue balloons and a cake, and invited lots of friends and family. When
the going gets tough, these girls go shopping. Half of the party
thought we were having a girl, the other half predicted a boy. Time
would tell, and the more time the better. Paul and I just wanted our
baby to be healthy and to not be born too prematurely.
96
CHAPTER 6
A Little Ray of Sunshine As our due date drew closer, Paul and I went
to see the doctor and go through everything that had happened during my
pregnancy. We discussed the few medical facts we had gleaned from the
MS Society information packs and together worked on a plan for my
delivery. Because of the urinary tract infection, I was still not at
my full physical strength and we knew it was quite likely that I would
have a major flare of MS after my baby was born. This was the
calculated risk I was taking by having a baby in my condition and I was
frightened. So in an attempt to make the birth relatively stress free,
the three of us discussed possible options for my baby's delivery.
Dr Yeoh and Paul were supportive of my preferences as the mother, and
by this time I had developed some assertiveness about what I wanted and
needed in my medical care. My desire was to have a natural birth and
then breastfeed my baby, but I am a realist, and what I wanted most of
all was a healthy
baby. I did not want to subject the baby to a stressful birth just to
fulfill my mothering needs -- I felt that my baby had already been
through enough traumas because of the infection.
A caesarean section was probably the most sensible option because it
would be a controlled situation. Paul's fear was that I would try to
deliver the baby naturally, get halfway through and then be too
physically depleted to go on. Then I would be faced with an aided
delivery in the end anyway, and this would be the worst scenario: the
exhaustion of delivery, plus the trauma of surgery, with just an added
dash of MS to make things really challenging. So I agreed to a
caesarean. After a lot of soul searching, I also opted not to

breastfeed. I felt very sad about this, but I had to be totally

level-headed as far as my baby's well-being was concerned. I did not
want the baby to be reliant on me for food and comfort when it was
quite possible that I would have to go on medication for my MS. If
this happened, I would have two major issues: instantly weaning my baby
and then dashing into hospital for intravenous steroids, leaving my
baby with a bottle and someone other than me to do the feeding. The
fear of an MS flare and consequent hospitalisation far outweighed my
desire to breastfeed my baby.
The plan was set. We had a date for our baby to be born, so I stayed
home, remained relatively calm and waited for the day. On 12 September
at eight in the morning, Paul and I went to the operating theatre.
Neither of us had slept the night before because we were too excited.
The room was full of nurses and doctors in a buzz of pre-birth
activity, and then it all happened so quickly. A green cloth was
raised below my chest to prevent me from seeing my own body cut open,
and next thing the doctor was announcing that he had to wake up my baby
to bring her into the world.
98 A baby girl -- my life's masterpiece. She was the most beautiful
thing I had ever seen and I was so proud of my achievement. I had got
her here against all odds and she was perfect: bald, pink, blue-eyed
and beautiful, her daddy to a tee. Just below the surface I was still
frightened of what MS flares lay ahead for me, but I knew from that
moment that this baby was worth it. I shall never regret having her:
from the moment of her birth she has given me purpose and made me
complete. Now I had some inkling as to how my parents felt about me.
Paul fell in love all over again. Had it been any other woman I may
have been jealous, but this one I had fallen for too: Prudence Amelia
Bretherton. She was wrapped in a towel and laid on my chest while the
doctors stitched me up. Paul and I cried, but baby Prudence just lay
there wide-eyed and peaceful, oblivious to her doting parents. Then a
nurse whipped her away to be examined by the paediatrician and put into
a humidicrib until she stabilised. I was sent to recovery but
encouraged Paul to go with our baby.
Back in my room, I was floating. In an attempt to reduce any
post-operative shock I was kept hooked up to intravenous painkillers,
which slowly eased the anaesthetic out of my system. I stayed in bed
longer than normal and was monitored very carefully in the hope that
this might reduce my chances of having an MS flare. Dr Yeoh and Dr
Peters had done their homework and were willing to try anything that
might prevent my MS manifesting itself in a major way. Lying in my
room alone I felt a little disappointed -- I had done all the work to
produce my baby and now she was in an incubator in the nursery where I
couldn't see her. I called the nurse and luckily she had been around
when I was in hospital some weeks before, so she knew without being

told what a struggle 99 it had been for me to get this far. Somehow,
she managed to break a few rules and brought Prue into my room so I
could watch her lying there in her fish tank.
A number of hours later, Prue was strong enough to be put into my arms
and I felt like I was the first woman ever to do something so
fantastic. It was an amazing feeling, magnified by the fact that I
knew that this was the only baby I would ever produce. The health
risks would be too high both for me and for another baby, so there was
no question of my trying to endure another pregnancy. If I had
developed temperatures of those magnitudes in the early months of my
pregnancy with Prudence then she would definitely have been born
disabled in some way, perhaps blind or deaf. I would never take that
risk again.
Before leaving the hospital the nurses suggested I organise some help
for the first few weeks, maybe once a week to get major household jobs
done. Having a brand new baby, the added complication of multiple
sclerosis and having had a caesarean qualified me for assistance, which
was an unexpected bonus.
When we came home from hospital, Paul took a fortnight's holiday so he
could help me and enjoy the baby. We were both nervous and this period
would give us some time to adjust to our new family structure. We rang
our mums a lot in those first few days, and we also worked hard
together -team parenting. Paul seemed to know instinctively how to be
a terrific dad and that, of necessity, this was a parenting
partnership. He understood that he would have to be more involved with
the baby than most other dads, and he was so good at it that he didn't
need to be asked to do things, he just did them naturally.
100
At home the first job was to make formula. I wasn't up to it, so Paul
set the kitchen up like a science lab and then proceeded to boil
everything before he made the baby's milk. No germ would have been
game enough to come into that room! At night the routine was shared:
we both woke, I would change the baby, Paul would warm her bottle and
feed her, then he would return her to me and I would settle her back
into her crib. This worked well because although we were both tired,
we had company. The only time this routine changed was when Paul had
to travel interstate.
As a result of his being so involved with Prue from the beginning, Paul
has developed a really close relationship with her -- he was her other
mother. He fed Prue every night bare-chested, so she was as familiar
with his smell as she was with mine. Paul changed as many nappies as I
did, bathed her more often and played with her every evening after
work. His only regret is that because he had to work during the day,
he didn't see enough of her as a baby. To this day they have stayed
best friends, the devoted dad and his loving daughter, and I realise
that I married a man whose close relationship with his daughter is very
similar to the closeness I shared with my own dad.
Of course, when Paul went back to work after the first couple of weeks
at home, I had to look after the baby on my own and, thank the Lord,
that is when Meralyn, my ready and willing home help, arrived. She did

housework, changed nappies, fed the baby or just kept me company when I
needed it. I still wasn't always comfortable accepting help at this
stage, but over the previous weeks I had learned to swallow my pride
and welcome the assistance I was offered. Prue was my first priority,
then my own health and then keeping our family happy -- if that meant

getting someone to help with the 101 chores so be it. I certainly

didn't want Paul to have to come home from work and then start on all
the tasks I hadn't done around the house.
After a caesarean you shouldn't stretch out, pick up the baby too
often, drive, or overdo anything, because it is major surgery and you
have to take care. So Meralyn became a part of the family picture and
it was her suggestion that she stay on after those first few weeks -she could read the signs of my physical decline long before I could and
knew I would continue to need help. Even now, so many years on,
Meralyn still comes once a week to help me - she hangs out the heavy
wash, changes the beds and always has time for a chat. I no longer
feel guilty asking for a hand because I know that the jobs she does in
no time would take me a day each to get done on my own.
During those first few months after Prue's birth I managed to keep up a
happy face. Prue was a contented baby and my days were full of baby
chores, but I was lucky, or perhaps our special baby just knew
instinctively how to behave, because she laughed more than she ever
cried. All too soon though, it became obvious that an MS flare was
imminent, because I continued to deteriorate quite rapidly. I couldn't
walk any distance and my balance was not great, so I decided that I
needed to see the specialist MS doctor, my neurologist.
Proudly I took my beautiful daughter with me to her offices at the top
end of Collins Street in the city. I wanted to show this doctor, who
had been opposed to my having a baby, that even despite MS I had
achieved something wonderful. I felt that the doctor's doom and gloom
were no longer 102 relevant, because against all odds I had a wonderful
daughter. Prue was one of the best things that had ever happened to me
and I wanted to show her off to the world, starting with my
neurologist.
Perhaps babies weren't normally brought into these rooms because the
pram filled the little waiting room, and the receptionist looked at it
with disdain. I went in for my appointment leaving Mum with Prue while
the doctor examined me. At the end of the session I asked the doctor
if she would like to come and see my daughter. Without a moment's
hesitation she declined my offer, saying she had more patients to
see.
I was shocked. After everything I had been through, the pregnancy, the
illness, and now facing an imminent flare, I wanted my doctor to share
my joy. But she wasn't interested. I knew she had been opposed to my
having the baby but I couldn't believe this reaction. If I was unhappy
with the way a trades person was doing a job around my house, I would
stop employing them. I was beginning to feel the same way about the
medical profession. If I didn't get on with them as a person, how
could we ever have a positive doctor--patient relationship? I needed a
doctor who would look at the whole picture, which now included Prue as
well as Paul, not just the medical curiosities of the disease and how
it affected me physically. I never went back to that doctor again.
Over the next year my health continued to deteriorate and I saw no
doctor other than various local GPs, but during this time I made some
decisions about the sort of specialist I would see when I decided I did
need one. I wanted a doctor who told the absolute, straight-up truth,

and one who would treat me as though I had a brain as well as a

disease. I wanted 103 a doctor who was well-informed and kept up with
changes in treatments for MS and someone who had a practical approach
towards the day-to-day realities of living with MS. Next time I would
do my research. Dr Peters had always treated me with absolute respect,
dealing with issues as they arose and putting the means in place for me
to get on with my life. I know that not all patients wish for this
sort of health professional - some people like the responsibility left
to the experts, with ignorance being bliss -- but I have needed to know
the whole story at every stage of my disease. That's just who I am. I
like to be in control as much as I can possibly be.
Over time I have developed the theory that nobody knows this disease as
well as I do because I am living with it daily, in my body and in my
head. As far as medical intervention goes, it is my responsibility to
tell the doctors what I want and how. Of course, I did not have the
confidence to say or even think this initially, but since then I have
learned to be assertive. But because of my visit to the neurologist
after Prue's birth, I stayed away from doctors for far too long and
slowly got worse. I figured that there was nothing doctors could do to
change what was happening to me anyway. There was no cure for MS then
as there is no cure for it now.
One day I went out to buy some groceries from the usual shop, not too
far away. It was just in the next suburb, but I had left Prue with
Paul because lately I had not felt confident driving -- my reflexes
were slow and I was worried about the baby being in the car if I had an
accident. But on this particular day I realised that I could not feel
my feet, so whenever I needed to brake or accelerate it was pure
guesswork. I was terrified. It \vas so dangerous, not only for me but
also for every other driver on the road. I stopped driving that day,
and 104 I also began to close my life down. In giving up the ability
to drive I felt I was giving up my independence.
Over the next few months, I sat on a chair next to the kitchen table
for so long each day that I wore the floorboards underneath away. We
have never filled or repolished that section of flooring because it
serves to remind me of just how lacking in motivation I became as my MS
progressed. Prue was still very little and slept often, so I would get
up each morning, drag myself into the bathroom, shower, get dressed,
come out to the family room and just sit in the one place, never
moving.
I was using a walking stick, but my legs felt so dead that I had to
hold myself up by both the walking stick and whatever else was close
by, perhaps a table or a chair, and then drag my feet along behind me.
This was absolutely exhausting. It felt as though the bottom half of
me was dying and I could not stop it. The top half of me still felt
strong, but it had to do double the work to compensate for my failing
legs.
In my heart I was beginning to lose faith -- not completely, but I knew
that the lively person I had been when I was young and healthy was
dying. It was hard to accept. As the nerves in my legs started to
fail, I lost the energy to fight the MS because no matter what I did, I
could not prevent this physical decline. The painful sensations I felt
were many: shooting pains from my feet up into my knees and thighs;
pins and needles; extreme feelings of burning or numbing coldness. No

longer capable of sending complete signals, my nervous system was

sending inaccurate messages to my brain. I cried out because of the
physical pain and I cried out to God in anger and frustration because
of the mental anguish. I just cried an awful lot.

105 My balance was going too; I could no longer feel my feet well
enough to balance when I stood up, so I would fall down. I would crawl
into bed at night exhausted from dragging myself from the lounge to the
bathroom and back again. Paul would yelp in horror when he saw how
bruised my body was each day. The bottom half of my body had become a
dead weight so when my legs failed and I landed on the floor, it would
be with the full force of that weight with nothing but my hands to
break the fall. My legs, bottom and lower back were covered in black,
blue and yellow bruises in different stages of recovery.
When Prue was first born the local health centre became a meeting place
for new mothers. I went along and was introduced to a group of women
who had babies of a similar age to mine. First up we did a series of
formal classes with the health care sister, but the group later evolved
into a kind of support network for us all. It also was a great way for
our children to have a playgroup together as they grew. As I lost
mobility, my friends from this mothers' group opted to meet at my
house, and in so many ways this group was my salvation. I supplied the
venue and tea and coffee, and they brought fruit buns, muffins and
their blessed small talk. We would chat for hours about cloth versus
disposable nappies, bottle-fed versus breast-fed babies, boys versus
girls. These afternoons kept me going because they gave me contact
with other people, women who were coping with infants and struggling as
I was with being financially dependent on their husbands. It was good
for me to feel normal and in touch with a world outside my increasingly
disabled body, to see that each of us 106 could change and comfort a
screaming baby, have a cup of tea and discuss the latest news all at
once. I was a young mum just like them and that was important to me.
Being included in such a circle of friendship and support was a major
contributing factor to my survival as Prue's mum.
But to be honest, at this stage of my life almost everything was just
too hard. Getting up in the morning was difficult because my body was
stiff, painful and cumbersome. I would go to the toilet once, then
half a minute later I would be dragging myself back to the bathroom to
go again, and then a few minutes later I would need to go again.
Sometimes I would lose it and wet myself, then have to change my
clothes. I would wash and disinfect the floor and be faced with
washing the clothes I had soiled. It was frustrating and exhausting.
I missed calls because people would only let the phone ring six times
or so and then hang up before I could drag myself over to answer. My
family and close friends knew to let it ring over and over to give me
enough time to struggle to the phone, but all too often I would just
make it to the table and it would stop ringing. The frustration of a
body that would not function - and missing the opportunity to be in
touch with another human being - would be devastating, and huge tears
would roll down my face. Usually I did not have the strength to cry
out loud, but the tears would roll as I silently pleaded that I be
given a break. Please, please, please.
Soon, preparing meals and doing the daily household chores became
all-consuming tasks. A simple job that an able-bodied person would
whiz through could take me double, even triple the time. Go to the
cupboard, get the plates to set the table, put them under one arm.

Hobble back to the table 107 on the walking stick, reaching out to the
bench, trying to maintain my balance; check the placing of my feet as I
desperately tried to stay stable. It was overwhelming and I was slowly
being defeated.
I was angry, of course. The doctors and the pamphlets had said that
most people with MS have unstable periods and then experience some
improvement. In the majority of cases people don't completely recover
from the effects of a flare, but in many cases at least some functions
get slightly better after a while. I suppose the problem was that my
previous experience of losing sight in my eye then regaining my vision
had in some ways given me false hope regarding the use of my legs. My
eye had been so bad, clinically blind, and yet I had been able to see
again, so why wasn't that happening now with my legs? Why was I just
getting worse? Impatiently I waited for an improvement, hoping that
one morning I would wake up to find that I could walk again. I prayed
that at least some part of my body that had been devastated by this
disease would be revitalised, because that would give me the strength I
needed to carry on.
There were a lot of mornings when I did not want to get out of bed, I
wanted to curl up and ignore the world. But thankfully, I had Prue.
In some ways having to look after an infant made things more difficult:
nappies, bottles, washing, baby food, naps. On the other hand, I had
no choice -- my baby needed me and regardless of how much I wanted to
ignore the world, for Prue's sake I couldn't. No matter how many tears
I shed in frustration, Prue still needed to be looked after, and that
gave me purpose.
Little things became major hurdles, like having to answer the front
door at the other end of the house. I would keep 108 yelling out to
the person on the other side of the door that I was coming, because I
feared they would leave before I got there. And of course the idea of
missing their company really distressed me and I seemed to go even
slower.
This was the common scenario for my answering the front door: when
someone knocked, I would pull myself up from my chair next to the table
and adjust my stance so that my legs and knees would sort of lock and I
would not fall. This also helped to re-establish my balance and remind
my body about the position it had to assume when I was standing. Then
I would start on the long journey down to the front door, requiring
such a huge effort both physically and emotionally that I often doubted
I could make it in time before my visitor left.
From the dining table to the telephone table I would shuffle with one
hand on the edge of the kitchen bench, the other on the quivering
walking stick. I would look down to keep an eye on my knees and feet
so that if they faltered I could attempt a recovery -- at this stage in
the progression of the disease, I could not feel myself losing balance
or falling, let alone walking, but I could see it.
At the top of the hallway I'd hug the architrave of the door so I could
round the corner and go into the hall. Keep talking to the visitor -hoping, it was a visitor not just someone collecting for a charity but often I was unable to hear their reply over the sound of my
dragging feet. Hug the wall, hand ut to the left, walking stick on the

right. I had to concentrate really hard and will my knees to bend, and
lift them high enough so as not to drag my feet too much. One foot in
front of the other, hold on to the wall, try not to cry.

But sometimes I would break into tears before I got to the 109 door
over the sheer exhaustion, humiliation and frustration of a body that
was failing me. I hated crying because it made my visitor guilty, and
perhaps then they would not want to come again. I needed to see other
people so desperately because the loneliness of being isolated in my
house was even harder to cope with than my body failing. Some people
had stopped coming to visit and I could not blame them because it was
pretty depressing. I was so unhappy and needed their company, and yet
they felt guilty about visiting and making me struggle to the front
door to let them in.
One day I was sitting in the family room feeling miserable when there
was a knock on the front door. When I finally got to the door it was
Marianne McCormack -- we had gone to high school together, but I hadn't
seen her for years. She looked just the same as back then, a round
face with a big smile and shiny green eyes. I asked her in and she
bubbled her way into the house. Marianne explained that she had been
at a wedding on the weekend and had run into my friend, Giuliana, who
had told her that I lived in Ringwood not far from Marianne. Giuliana
also told her that I had married, had a baby and been diagnosed with
MS. I suppose the thing that stands out in my mind about that moment
was that she didn't seem too fazed by my physical decay. She just
chatted on.
Like all old school friends we spent a lot of time playing the 'do you
remember when' game. We had been fairly good mates, but not best
friends; she had played the piano brilliantly and accompanied my
singing in school presentations. There had been a couple of times we
had run into each other at 110 university but, if I am honest, I must
admit that I brushed her off then because drama students were far too
cool to be associated with the laming ton ladies' from food technology.
On reflection I probably did not deserve a visit from Marianne because
I had been so horrible to her when it had not suited me to be friends.
When I worked at Brashs, Marianne had worked nearby and we occasionally
caught up during our lunch breaks. Even though I snubbed her at uni,
Marianne had always been happy to see me at work and we would enjoy
chatting about girls we knew from school, but over the years we had
lost contact with each other.
All these years later, here she was sitting opposite me in my lounge
room, chatting over a cup of tea and not particularly upset by my
condition. I had not struck this before; everyone else was so
distressed that I had to comfort them. It was refreshing for me to be
accepted for the person I was, regardless of my physical condition. We
talked for ages and as the afternoon wore on I understood why my
situation did not worry her so much.
Marianne had married Jamie, her debutante partner, around the same time
Paul and I had married. Jamie's first cousin and best friend Tim, who
had been their best man, was in a motorcycle accident before their
wedding that made him a paraplegic. So in a way, Marianne had already
seen what was happening to me happen to Tim: she and Jamie watched
their healthy and happy friend become physically a very different
person. They had stood by him in hospital and watched him metamorphose
from an able to a disabled person. I realised that the Marianne
sitting opposite me was also a very different person to the girl I had
gone to school with. Marianne seemed to have a knowledge and an

understanding of me 111 and my situation that I had not encountered

before, and she had no prejudice about what could happen.
From that moment on our friendship was rekindled, but on a very
different footing. I think in some ways it was still a selfish
friendship from my side, because Marianne always seemed to be a better
friend to me than I could be to her. I loved that she accepted me so
completely and without prejudice. Marianne is a hands-on type: sure
she likes to talk as I do, but she also rolls up her sleeves and gets
things done. Right from that very first day she learned where things
were in my kitchen and, without any fuss, made drinks as we needed
them. She took it upon herself to take me shopping. Every week she
would guide me out to her car and drive me down to the supermarket,
then collect a trolley and bring it to the car so I could walk behind
it as I made my way from the car park, into the store and up and down
the aisles. I could not rush - it took all my energy to get one foot
in front of the other -- so we talked and we shopped. Marianne would
pull things down from shelves, rush back and forth if I had forgotten
things, and steady me if I looked as though I would lose my balance.
The whole time we would barely draw breath, sometimes talking about the
big picture, but more often just discussing the little things that we
found important or funny. Even though I was embarrassed about the way
I walked, it never seemed to stress Marianne. She did not worry as I
did about what other shoppers were thinking - my dear friend was
oblivious to my disability being a problem. I always enjoyed these
outings because they gave me a few moments of independence away from
the confines of my house and baby. Shopping gave me the opportunity to
make choices, even if they were only about what we would eat, or which
112 toilet paper we would use, but at least I was making them. Only
when you have been so captive by circumstances as I was do you
understand how important such flashes of freedom can be. Marianne
seemed to understand this so well, whether because of her knowledge of
Tim's experience or just because of her natural empathy, I'm not sure.
I just know that sometimes the trip to the supermarket with Marianne
saved me from going completely crazy. Her practical approach was so
positive when my life seemed so negative.
Not long after Marianne's first visit to my house, she asked me around
to meet Tim. In some ways I was curious to meet him, in other ways I
was frightened by the thought of him being a paraplegic. People with
MS are rarely put into rehabilitation hospitals and exposed to
wheelchairs in a positive way, so I felt that by meeting Tim I would be
looking at my own future in a wheelchair and that frightened me -- I
did not want to look too closely.
Tim talked about his wheelchair, living in his home, working full-time
as a police officer and driving his car. He even showed me how his car
hand controls worked and gave me the name of his teacher in case I was
interested in learning to drive again, but I was still holding all this
information at arms-length. Tim was a great guy, and Marianne and Paul
were trying to be positive and supportive too, but I continued to deny
the dramatic effects of my MS and to look towards the ever-elusive
recovery period. I was still not willing to factor a wheelchair into
my life.
Meanwhile, Paul was losing hope that exercise and phys io could reverse
the effects of the MS and was beginning to feel that I would never

regain the use of my legs, but we were willing to try anything that

might fight off the inevitable 113 wheelchair, no matter how bizarre
it might appear. I had read about an alternative medicine called
'percussion point therapy' in Short Circuit, a magazine for people with
MS. Paul and I were desperate, so we headed off to meet a Chinese
doctor named Meng De who used a combination of acupressure, phys io and
massage to aid people with MS. We went to his rooms and he explained
his theory, telling us that he needed to teach this technique to Paul
who would then have to treat me once or twice a day. We started the
procedure at home and soon I was black and blue from the pressure that
my muscles had to endure.
Part of the daily activity was to drink a herbal concoction prepared by
Meng De's wife. The bag of leaves, twigs, roots, seeds and other bits
had to be boiled down four times each day. A black sludge would be
extracted that I would drink before eating food. It was putrid and I
could not get the taste out of my mouth or the smell out of the house
for ages. I drank this potion for forty days, and then a month later I
repeated the procedure for another forty days. It cost a fortune, and
it did not change a thing, but we had to try. We knew we were getting
to the end. It had been over a year since I was diagnosed and all my
physical symptoms were just getting worse. So eventually Paul, Meng De
and I agreed that there was little hope and we discontinued the
treatment. My bruises faded and the smell left the house. We were
defeated.
CHAPTER 7
Living with a Loaded Gun For a long time I felt that living with MS was
like walking around with a loaded gun in my pocket, and I lived my life
so carefully to ensure that the gun would not go off. Almost
frightened of my own shadow, illogically I feared that anything at all
might shock this disease into going off and destroying me. I
deliberately avoided any situation that could cause me stress and might
therefore activate my MS.
The problem, of course, was that while being so careful I totally
avoided life. Physically exerting myself by taking a walk in the
sunshine or emotionally stirring myself by having a healthy argument
with someone were out of bounds. Intellectually wishing hard for
something or taking on too many commitments were no longer part of my
life. But in the process of strictly avoiding these situations I began
to destroy myself and the reasons for my existence. Methodically I
reduced everything to the point where I had no life and no soul - my
life was no longer worth living.

114 115 During this period I hated myself and I was embarrassed about
what I had become -- a disabled person. Whenever I went out it felt as
though everyone's eyes were on me, and a lot of the time they were
because I struggled so much to make my body move. I was most stable
walking behind Prue's pram or pushing a shopping trolley: I would have
both hands firmly wrapped around the handle, concentrating hard to get
one leg to go in front of the other, one foot then the other. It was
awful and I was miserable, because I was frightened that I would flip
the pram or fall down. People would stare at me, assuming I had been
drinking as they watched me stagger, trip and fall. Then it would take
me ages to get up and recover my footing; it was easier not to venture
out at all.
So I stayed at home. By not going out I didn't have to face people,
and in many ways I didn't have to face myself either. There were days
when I didn't want to get out of bed because it would have been easier
to curl up under the covers, ignore the world and definitely not look
at myself in the mirror. But I had to get up because Prue needed to be
changed, fed and looked after. I would not get dressed though staying in my pyjamas was easier and I didn't have to make a choice
about what I was going to wear. It also meant that going to the toilet
was quicker, which was important because at that stage I had
'frequency', meaning I went repeatedly. I needed things to be
simple.
Mum often came to visit to help with the baby and my attitude. She
would encourage me to get dressed and put on make-up in an attempt to
help me recover my self-respect. She bought me new clothes and tried
to make me feel good about myself. Typically I watched television each
day, but it was difficult for me to get up and change the channel so I
116 kept the same station on all the time. I was thirty years old and
suddenly I didn't have a life. I hoped that watching television might
give me something to talk about. I watched Oprah Winfrey religiously,
catching so many of her shows that I saw her lose and gain weight more
times than was physically possible in one year. My boring routine
never changed.
Paul would come home at night and I would have nothing of consequence
to discuss, nothing to share as I once had done so animatedly. Prue's
movements and changes were important, of course, and we could at least
talk about these in great detail. Then I would ask lots of questions
about Paul's work, about the decisions and conflicts that had
transpired, gossip about people -- anything that would let me live
through him by sharing his day. I realise now that I lived vicariously
through him for that entire year.
Finally I lost all self-confidence and for a long time was convinced
that Paul must be having an affair with one of his work colleagues. I
felt so unattractive that I translated this into Paul's need to find a
new partner. My mind played games and I put myself through hell for
weeks, always angry and suspicious. If Paul was late home from work, I
accused him silently of being with another woman. If he didn't ring me
constantly, say two or three times a day, my mind would be mapping out
his illicit activities. And of course if he went away on a business
trip, he had to be sleeping with one of the women from work.
Pathetically, although nothing else was working properly, my fertile
imagination certainly hadn't lost its power. It was all about me, not

him, because I now believed that I had nothing to give him and was no
longer worth loving.
I stewed over these imaginings for weeks, and eventually I was so

totally consumed by self-loathing and jealousy that 117 I could barely

function. Finally one night I confronted him, demanding to know who
he'd been with and insisting that he didn't love me any more. Paul
simply took me in his arms and consoled me, horrified that I'd been
upset for so long without talking to him about it. He promised he
would never do anything to jeopardise our relationship.
My insecurities were a major issue for us and it was obvious we needed
to work more in our marriage to become close again. Of course I had no
idea that this was something that new parents often face, when the
mother has low self-image and lacks confidence and the couple's once
selfish relationship has been forever changed by the existence of a
third person. I didn't realise then that life becomes far more complex
with a child. I had thought that it was only about my being disabled,
but I was way off the mark. I was about as low as a person can be
mentally, obviously suffering from depression without it being
diagnosed, because as my body deteriorated, so did my perception of
myself.
My negative experience at the MS Society meant I didn't want to go to
them for help, so I felt there was no one to talk to about my downward
spiral. Eventually I spoke once more to Nick, the psychologist, and he
talked again about the fact that I had to give myself legitimate time
to be down. Nick reinforced his simple strategy which enabled me to
get back to life on some levels: I would get up, get dressed and eat
break-fast. This was a start, but little else happened as I no longer
had the energising things in my life I once did. I had been such an
active person, never missing a party and always the last one to go
home. Now I couldn't decide whether or not to venture out for a walk
around the block with the baby in the pram, let alone attend a function
with a crowd of other people.
118 Prue was growing at an incredible rate, crawling early and
wriggling around the floor. I couldn't keep up so we bought a playpen
to ensure she would be safe while I moved awkwardly around the house.
I wonder now if I really enjoyed this exciting stage in her life.
Sometimes I can barely recall events that occurred around this time -I guess once again my lack of memory protects me from how horrible it
was for me then, both physically and mentally. My mood was grumpy,
while Prue's was so happy. I suppose that was the beautiful part about
my baby: she never seemed to notice what a hard time I was having, nor
did she judge me for being far less than perfect -- she just loved
me.
I could no longer lift Prue because the risk of dropping her was too
great. She wore overalls and I would grab the straps of her pants and
shove her under my arm, but I seldom walked while carrying her. She
never raised her arms to be lifted up as babies normally do: instead
she would back up to let me pull her up beside me by her straps, like a
mummy cat lifting a kitten by the neck. She was truly amazing. When
Prue got too big for me to carry that way, my older sister Jane got a
shopping trolley so I could push her around the house, as a pram was
too low for me. I could lift her from her high chair into the trolley,
and wheel her down to her cot. Nothing was simple. Every act, even
the most straightforward, was hard for me.
I hate admitting that there was a stage during this metamorphosis from

able bodied to disabled when I worked out that I had the ultimate
excuse for being lazy. What a revelation: no one expected me to deal
with life, so therefore I wouldn't! I did not have to get dressed, do
the shopping, drive, look after myself, clean my house or, best of all,
make a decision. I guess it was what many people wish for each day.

119 When work gets hard, or family issues are too difficult, or
relationships seem like they are just a series of confrontations, give
up. When the washing gets behind, or that deadline is impossible to
meet, forget about it. You wish that someone would take all that
responsibility away and magically in my case people were prepared to do
that for me, because I was so willing to hand over responsibility for
everything. But not dealing with the day-to-day issues that make life
complex and challenging is virtually the equivalent of being dead.
Well, that's how it was for me.
Living life with a disability certainly makes everything more
difficult, and it also made me more critical of the value of living.
There were times when I contemplated suicide. I worked on plans of how
to achieve the best and quickest result, and most of these plans meant
driving my car off something steep enough to be a total success. My
little yellow Mazda was in the driveway waiting for me to turn it into
an instrument of suicide. The plan was not just to find a bridge or a
hillside, where there could be a fair chance of survival -my ultimate
scheme involved a steep cliff. The Great Ocean Road seemed like the
best option because the cliffs have extreme drops, with rugged rocks
and strong ocean currents beneath them. My theory was that if I did
not die on impact, at least I would drown. These thoughts had little
logic to them because I knew that in reality I could not drive anyway,
so I cannot explain why I constantly played out these scenarios in my
head. All I know, and remember so clearly, is desperately wanting to
end the life by which I was imprisoned. I wanted no more pain, no more
humiliation, no more sadness. Mentally I was as low as a person can
go.
Oddly, even though I was on so much medication at the 120 time I never
considered that I had enough pills around the house to take a drug
overdose. Maybe I was frightened that if Prue saw me dead it would
haunt her for the rest of her life, but I don't think I was
particularly logical when I contemplated death. In so many ways the
life I was leading was completely alien from that of my recent past
that death did seem a reasonable option, but I was still sane enough to
realise that I wanted to see my daughter grow up. Then again, I did
not want to become so physically disabled that I was a chore to look
after and a total misery for Paul and Prue to be around. But there was
always also the underlying feeling that I didn't want to miss out on
whatever life I could enjoy -- there was still some of the old Anna
left in me yet.
My mind played these games and continued to weigh up the choices. It
would be unselfish to free my husband and daughter from having to worry
about me. It would be selfish to stay and burden them with the
constraints of a disabled wife and mother. It would be good to end
this pain and frustration. It would be bad to leave this world that I
had once loved so much -- but at the moment I was on the outer of that
world, watching it go by. Repeatedly, I played out these scenarios and
each time I hung in there and resisted the temptation of suicide,
because the reasons to stay seemed stronger. But I never believed
there would be retribution from God for committing suicide because I
believed that my God would love me and understand my reasons. No god
could condemn me for giving up and ending this miserable life.
It always came back to one stark reality: Prue.

She was my baby and

thankfully I believed that it would be hard to replace me because I was

her real mummy. I always thought that Paul would find another love if

I died, although I did not really 121 want to consider the possibility
of him with someone else. I wanted to be selfless and make it possible
for him to find another love and start his life again, but Prue needed
me, and to survive I needed Paul. And really, when it came to the
crunch, I did not want to leave this world -- I wanted to stay and keep
hoping that things would get better for me. I wanted the sun to shine
on my life again. I wanted to be happy. Typical Anna, my mum would
say, because basically I just didn't want to miss out on anything and
that's ultimately what kept me here. This disease was the hardest
thing I had ever had to face, and even though Prue was in my arms and
Paul was by my side, this decision to live or die was one I had to make
on my own.
Around this time I made another tough decision: I decided to hire a
wheelchair, an ugly, awkward, cumbersome thing that would label me as
being different. I would be seen as disabled. This wasn't supposed to
happen -- not everyone who is diagnosed with this insidious disease
ends up in a wheelchair. To me it was the last and very final step
towards the end of a normal life -- the wheelchair would make me less
of a person, incomplete in the eyes of those around me. Learning to
use a wheelchair was something I never anticipated having to do. It
was not in my plans as a kid or an eager drama student at university.
I had just turned thirty and it was only two years since I had been
diagnosed with MS, the same amount of time that Paul and I had been
married. We had had the roughest introduction to marriage imaginable.
Prue was fourteen months old and had been walking since she was barely
ten months: in the past year 122 my baby had learned how to walk while
my body had just as rapidly forgotten how.
A friend hired a lightweight wheelchair for me to try out and brought
it around to our house. I felt that once I sat in that chair there
would be no turning back. When I look back now at that dreadful
moment, it seems almost funny that I held off the inevitable for so
long. I had no life to lose and the feared wheelchair was actually
going to make things easier, literally open new doors for me. But
instead, once the chair had arrived at the house it stayed where my
friend had left it. I let it sit on the opposite side of the room as I
eyed it off, hating it and in the same breath hoping desperately that
it could improve my quality of life, which by now I considered to be
less than zero. As day turned into night, I moved closer to the chair
and finally, grudgingly, sat down in it.
I didn't have any advice or help. I just went it alone, learning to
navigate it around the house and to cook, clean and look after my baby,
all from a wheelchair. Paul looked at the latest addition to our
household with trepidation. He felt that if I worked harder at
exercise and he did more massage perhaps we could hold it off. Prue
didn't care. I suppose for her it was just a relief that when she
called I could get to her in reasonable time. To my surprise and
horror, the wheelchair made my life easier. The absolute exhaustion I
had suffered disappeared. I was relieved that I could get to the
bathroom on time. I could pick up Prue quite quickly if she cried. I
could finally change the channel on the TV and answer the phone before
it rang out. I was both staggered and grateful. Life was actually
better from a wheelchair.
However, unlike people who become paraplegic through an accident and

attend rehabilitation sessions at a hospital, 123 I never received any

coaching on how to use a wheelchair and so it was inevitable that I
would have some terrible accidents. Trying to negotiate ramps that
were too steep, I flipped out of my chair on numerous occasions. There
were many times in those early days when I would attempt to lift or
move my wheelchair and fail because my upper body was not yet strong
enough to attempt such a thing. And I burned myself badly in the
kitchen: I learned an early lesson about hot water and cooking while
sitting in a wheelchair, and that was to never pour boiling water into
a cup without first putting something over your knees to protect them.
I guess it may seem obvious, but I had to learn to respect the
limitations of life in a chair. But I was determined to succeed so I
worked and worked at it.
Paul and I didn't make any modifications to our home to accommodate a
wheelchair, and we still haven't, for a couple of reasons. It seemed
selfish to change things to suit me when Paul still has to be
comfortable in our home, as does Prue. Plus I have always felt that if
my home environment were modified to suit my specific needs, then going
out of that safe place would be exceedingly difficult for me. If we
visited other people's homes or went on holidays, being in an
unmodified kitchen or bathroom might cause me unnecessary anxiety
unless I was used to coping with things at a normal height.
But to be honest it was probably more about ego. Paul had just
finished renovating our home; we had chosen the fittings and beautiful
period-style decorations. I didn't want to rip out our claw-foot bath
to put in a disabled shower, so I coped. Our house was built in the
1920s and has a set of beautiful old doors with lead light panels that
open from the elevated 124 front veranda into the hall. All that would
have been destroyed if we had decided to make it wheelchair accessible
with a ramp and wider door. So I don't use the front door to go in and
out of the house -- I use the back door, which was already wide enough
for my chair and didn't have to be modified. If we had owned a
double-storey house we would have had no choice, but "Green Gables' is
single storey and without changing a thing I have been able to live
here in a wheelchair.
When I first got the wheelchair, I very ambitiously decided to wheel to
the house where our mums' group was meeting that week. It was in a
local street not far from our house, but I had underestimated the
strength needed to push a chair that distance, not to mention that I
had a small infant sitting on my knees. I was totally defeated by this
attempted outing and any confidence I had built up to this point was
blown by my miscalculation and resulting exhaustion.
Over the following months I learned to respect the wheelchair, even if
I didn't like it, but after that initial doomed outing I could not or
would not venture out in it alone. It was easier to stay home. I was
still coming to grips with what had transpired and now that I was
becoming dependent on the chair for mobility it was a whole new ball
game. Who was I? How did I see myself in relation to the rest of the
world? Would I ever accept becoming disabled?
I had no direction and little faith in myself, let alone in a more
powerful being. Many people saw this as an opportunity to talk of
their religious beliefs and faith in God. I have absolute respect for

other people's religions, and if my illness had taught me anything it

had taught me to be tolerant, and 125 perhaps it had also given me a

willingness to listen. But when people try to cure my MS with their
faith, I find it really difficult. My body had failed, I had lost my
self-confidence, my life was no longer what I had planned, let alone
what I liked, and yet some people were telling me that if I believed
and prayed harder I would be redeemed and cured. One particular woman
in the midst of my circle of friends had recently found a new style of
Christian faith, and she would not let up about how it had changed her
life and so it could change mine. I politely explained that my faith
was my own and that she should not interfere, but it was difficult not
to be rude.
Eventually I worked out for myself how I felt about my God and dealt in
my own way with my diagnosis of MS. As far as I am concerned, I did
not deserve to get it and it was not sent from God as a punishment or a
test, as some people have suggested. I have MS because it is just one
of those things - the real test of my faith as a Christian is how I
choose to deal with it. I don't believe that prayer can cure me, but
it can give me the tools to cope and the strength of faith to go on.
That is my deal with my God, and other people's beliefs are theirs to
sort out, not mine. I don't blame God -- I never did. I have been
angry at my inability to cope sometimes, but I think it's healthier to
stop asking 'why me?" Sometimes I have even thought that maybe the
question is really 'why not me?".
It was bad luck that I contracted MS. And it was good luck that Prue
is the sort of child she is. When I was so miserable that I was
contemplating suicide, Prue was a delight. People never hesitated to
look after her because she was so friendly and happy. As a toddler,
Prue never ran away from me like 126 other children you so often see in
the supermarket or the street, and it was almost as though she had an
inner understanding that I couldn't chase her. Like other little ones
she would always give her dad a run for his money, but she never ran
away from me. As the year of the wheelchair wore on, Prue learned to
walk with more confidence and eventually she started to walk next to my
wheelchair with her small hand resting on my knee, like holding hands.
It still makes me sad that I was never able to walk along holding my
little girl's hand -- maybe it seems trivial in the big picture, but it
was a major frustration for me then.
Through Prue's second year I lived a quiet, simple life. I was coming
to terms with the true impact of MS -- I had turned into a disabled
person. I didn't feel whole any more, and my life was very different
to the one I had imagined for myself as a child. My husband stood by
me and my baby was beautiful, but I wasn't a happy person, and most of
the time I felt depressed. I was exactly the person that they had
described in those pamphlets from the MS Society: I was reliant on
drugs to get me through the day; I was unable to walk; I suffered from
heat exhaustion and fatigue; I had bladder problems. It was a struggle
to get from one day to the next.
For Prue's second Christmas, Paul and I decided that a good distraction
would be to head down to the beach for a holiday. I am always happier
by the water - Paul could go surfing, and Prue could play in the sand.
So we took a house at Phillip Island with our friends Marianne, Jamie
and their new son Thomas, sharing the costs and the fun. We lay on the
beach, cooked BBQs, drank wine and talked for hours, living a

delightful Utopian existence for several days until we 127 received a

phone call that would test the very essence of my shaky grasp on
life.
Tim, Jamie's cousin and best friend, had taken his own life. He had
done what I had so often contemplated. As we registered this tragedy,
I felt as though I should be supporting Marianne and her family, but it
was too close to my own fears and thoughts. Marianne, Jamie and baby
Tom went back to Melbourne that afternoon while Paul, Prue and I
stayed. We didn't go to the funeral, not because we didn't care but
because we cared too much. The reality of the moment was too painful
and I couldn't face up to the fact that it could have so easily been
me. This wasn't about Tim - it was about me. It was a selfish
perspective but the only one I was capable of at the time.
The implications were terrifying for me. Tim was strong enough - or
was that weak enough? -- to kill himself. He had got to the stage
where he could go on no longer. I was faced with the absolute
actuality of this act that I had contemplated, planned and argued with
myself about over and over again. It was a moment of revelation and
truth. I watched my friends Marianne and Jamie and saw how Tim's
suicide changed their lives. He had seemed so powerful and strong, and
yet the reality of his disability had become so overwhelming that he
had lost control and focus, opting for escape -- escape from the
disappointment, from the pain, from the humiliation and the
comparisons.
I was humbled and saddened but at the same time empowered by Tim's
death -- in many ways it gave me back the edge, an understanding of how
precious life is and how futile death is as an escape. I had thrown
around my options for two years and now it was time for me to choose
because Tim, who had given me so much strength to combat my own
disability, had taken his own life.
This moment altered my approach to being a disabled person and changed
my life forever. I had spent so much time hiding from reality and I
could no longer justify that. It was time to go out and take back my
life, to once again become the Anna of old by grabbing life by the
throat and living it to the full. My disability wasn't my fault -- I
had drawn the short straw and that was bad luck, but now it was time to
take control again, because Tim's death proved to me that letting
yourself get out of control results in misery all round. The only way
that things were going to change was for me, Anna, to take
responsibility for my own actions and stop blaming everyone else for
what had happened.
It was time to feel good again. Good about myself. Good about life.
There was nothing good about Tim's death, but it did give me the
courage to create a new life for myself. A gun can proverbially go off
in anyone's life, any time. Without such a fragile existence we humans
would be invincible and somehow lesser beings. My life was changed
forever by the gunshot that was the diagnosis of multiple sclerosis,
but it was not the end for me, merely the turning of a very challenging
corner. I could have just as easily been in a car accident, or perhaps
struck by lightning. The only difference was that I had learned
through the process of a diagnosis of MS and the gradual onset of my
disability just how precious my life is, and had come to appreciate

that each moment on earth is a gift.

So many people around me don't think like that, complaining about what
has happened to them, or about what might have happened but never did.
I try not to do that any more.

129 My trick for keeping negative thoughts in check is by imagining

that I do have a loaded gun in my pocket, and then, because of Tim, I
remember just how precious each moment is -- much too precious to waste

complaining about what might have been.CHAPTER 8 Getting on with the

Game As I saw it, I had two choices: I could sit and watch the rest of
my life go by, or I could pick up my bat and ball and get on with the
game. I was ready to face that challenge.
The first step was to accept that it was time to change my approach to
life. I had to stop looking at myself as badly done by and start
looking at the good parts of my life. I began to understand that I was
lucky -- I still believe that I am lucky. There was so much in my life
that I could be positive about, and I was sick of being miserable all
the time. I wanted to recreate the unstoppable Anna.
I had not realised until then that I had been underestimating my
capabilities, just as other teachers, years before, had underestimated
those kids in the special school where I had taught. I had been
horrified then by their blinkered approach and that they could not see
the potential in their students, and yet here I was doing exactly the
same to myself. Because of my MS I had been denying myself the 131

opportunity to excel in anything ever again. Jolted by Tim's death, I

now understood that it was time for me to begin my life again, and so I
consciously gave myself permission to sparkle -- to strive to become
the fairy princess once more. But after spending two years shutting
down your life, it is difficult to know how to start it up again. I
knew that I needed my independence back and so, to help achieve that
aim, my number one goal was to learn to drive again.
Compared with a person who experiences a major trauma causing their
disability, like a car accident, there seemed to be very little
guidance for someone like me. Unlike someone who had experienced
trauma, I did not learn to use my wheelchair in a rehabilitation
clinic, I went it alone. Just when I'd decided to get my life in order
and needed help, I misguidedly felt I could not go back to the MS
Society because I had found that first meeting such a negative
experience. Perhaps if I hadn't been so pig-headed and I'd reached out
for help, a service would have been available to me back then. Of
course, this would all change in due course and I would finally
reconnect with the MS Society and its wide range of services, but for
now it meant I had to start out on my own, without the expert help I so
desperately needed.
Thinking back to when I had first met Tim, I remembered that he had
talked about a speciali sed driving school. I searched the phone book
and found one, then booked a lesson and went out on my first drive
using hand controls. Funnily enough my current driver's licence was in
my handbag and legally I was still able to drive, but of course
physically I could no longer control a car unless I developed these new
skills.
The hand controls came out from under the steering wheel 132
and looked like a bike handle with switches on it. Basically they
worked because they were attached to the steering column, with solid
weights connecting down onto the foot controls. When you push the
handle back towards the dashboard the car brakes, and when you pull the
device down towards your knee the car accelerates. Hand controls
cannot be used without a spindle, like a rolling knob on the left-hand
side of the steering wheel, so that the driver can use one hand to
steer with it and one hand to brake and accelerate. It all sounds
simple enough, but it took me a little while to get used to it.
I guess in some ways it was easy for me to learn to drive again
because, unlike the first time I learned to drive, this time I knew the
rules. More importantly I had experience on my side: I understood the
way a car moved and knew how it would respond to my actions. Initially
the tricky part was reteaching my brain so it would react to situations
by relying only on my arms and hands. My brain soon understood it
could no longer rely on my legs, but the quest to regain my confidence
was the truly difficult part in learning to drive with hand controls.
Because I didn't know anyone with a modified car to practise in, it
took many lessons in the driving school car before I had my road
confidence back, and of course that was expensive. Our family of three
was living on one income with Paul supporting me, our new baby and my
disability, which meant medication, wheelchair hire, taxis to get
around, and a stack of other little things that added up quickly, plus

my driving lessons. But eventually I went for my speciali sed driver's

licence and found that the test was far more rigorous than when I had
got my original licence.

133 As part of the driving test I had to undergo a medical checkup,

which is now an annual event to ensure that my condition has not
deteriorated. I also had to see an occupational therapist to make sure
that my strength and coordination were of a reasonable standard. The
next procedure was a vision test followed by a visual perception test,
as it was crucial that I had a reasonable depth of field in my sight.
I also underwent a written exam on the rules of the road before finally
going out on the road to be tested in a car with hand controls. I
passed, so legally and safely I could drive again, but only in a
properly modified automatic vehicle. Regaining my driver's licence was
so important to me because it was the first step towards living my own
life again. A few weeks later, when Prue was just two years old, I got
my first set of hand controls, which were fitted to Paul's car.
Getting my licence was just the beginning. To go out in the car I had
to put Prue in her car seat and, to buckle her in, I had to stretch my
arms over my head while lying back in the fully reclined driver's seat
- an awkward procedure. Then, while sitting in the driver's seat, I
would have to pull my wheelchair to pieces and lift it across me into
the car, placing it on the front passenger's seat. When I arrived at
my destination I would then reverse the procedure.
Prue was such a good baby, she never cried or mucked up -- it was as if
she had a sixth sense, an innate understanding of my disability. She
would sit quietly in her car seat as I struggled with her buckles and
then with my wheelchair. In a very short time she learned to buckle
and unbuckle her own car seat, as if to relieve the pressure on me.
The uncanny part was that I couldn't ever remember her undoing it at an
inappropriate time.
134 I realise now that Prue never got to sit in a pram much -- walks
with her dad and her grandparents on rare occasions are the only
memories I have of her going out that way. However once I was mobile,
with the magic combination of a wheelchair and a car, we didn't need a
pram and there was no stopping us. Prue and I had two years to catch
up on: shopping, going out to lunch, attending playgroup, visiting
friends and family at their homes. Prue would perch on my knee like a
blonde doll, or she would walk along next to my wheelchair with her
hand on my knee. My ability to drive again gave Prue and me a whole
new world to explore together.
I had to be clear-headed to undertake all this 'normal' activity, and
this meant I eventually worked out that no matter what medication I was
on, the side effects of the drug usually did not justify the benefits.
So I made the decision to not rely on drugs as much as I had in the
past. Painkillers, anti-spasm medication and anti-depressants all
helped with the moment-to-moment issues of discomfort, but because of
these drugs I had been vague, my responses dulled, and I felt as though
I was living in another room. An infant changes so quickly from
toddler to child and I knew I had been missing out on these precious
moments because of my deadened senses.
It was important for me to get this under control, not just for my own
peace of mind but because I was afraid that while driving or looking
after Prue I might not be able to respond quickly or effectively enough
if something threatening happened. Apart from this frightening

consideration, Paul had also been dealing with my mood swings.

Typically in the first hour after taking the painkillers I would be
vague and distracted, then I would be okay for a couple of hours, then

135 in the last hour of their effectiveness my mood would be grumpy

and snappy as the drugs started to wear off.
I knew I could not keep doing this to my family or myself. I wanted to
control the use of medication and stop the drugs from controlling me.
From the moment I reached that monumental decision things began to
improve, but I had to come up with an alternative way to cope - one
that really worked. I had heard about pain management, so I decided to
do something about it. This was my new approach - proactive rather
than reactive.
I started to wean myself off some of the drugs; I didn't go cold turkey
because that would have been foolish. As a result of this weaning
process, I regained a level of consciousness that I had lost over the
previous couple of years, and happily my ability to concentrate for
longer periods was reinstated. My memory was better. My organising
skills returned. Immediately my body responded and felt almost well
compared to how it had been.
But I am a realist and have never been able to withdraw from medication
completely. I take a low-dose antibiotic every day to lessen the
chance of a urinary tract infection. There have been times when I have
tried to reduce this level of medication, but I always get sick and
have to return to the original dosage to fight off a UTI. I also take
a small amount of anti-spasm drug each morning, just to make my days
start more easily. Getting showered and changed is difficult enough
from a wheelchair - it's far more so if my legs are sticking straight
out in front of me because they won't relax due to spasm.
Because I live with constant pain, I keep painkillers in the cupboard
for those thankfully rare occasions when it all gets 136 too much to
handle and I have to escape into a pain-free place for a while, away
from the aches and pains. I have read and heard members of the medical
fraternity say that there is no pain with MS -- these people obviously
have little knowledge of the illness. Perhaps they just looked at the
medical 'logic' and the way in which the disease manifests itself in
the body to draw this conclusion, because there certainly is pain with
MS. I try not to compare myself to other people who have MS because
everyone's experience of the disease is different, as is everyone's
ability to cope with pain, but most people I meet who have MS endure
some degree of pain or discomfort.
Pain management for me was basically learning to distract myself from
the pain and, by pushing it into a lower consciousness, learning to
live with it. The pain is there, it is always there, but I have
learned not to let it consume my thoughts. As a result of this
determination it does not dominate my physical existence or drain my
energy any more.
I learned to control the pain using a meditation tape: I would lie in
our bed and listen, using it to distract my thoughts away from the
pain. The tape had a couple of relaxation exercises, plus a physical
exercise where you stretch out your body and then relax each muscle,
but the latter was the least effective for me because it often induced
spasm. The relaxation exercises worked as a mind distraction: one
talked about walking through a house in my mind and used a rainbow of
colours to clear my head. In each room I had to imagine different

colours and decorations, starting with red, orange, yellow, green, blue
and finishing with uplifting white. This meditation was one that I
found very effective. I learned that all I needed was a good

distraction and time to concentrate on it -- that is 137 the really

important part of managing my pain, consciously taking the time to look
after myself. At first I had to distract myself with tapes many times
in one day; now I use them only rarely, to take my mind away from the
discomfort.
Once I had my pain management in place I decided that, after more than
eighteen months without seeing a neurologist, it was time to go back
and have the effects of my MS checked and monitored. I had been doing
it on my own for too long. Of course I had the support of my family
and friends, but basically I had looked after myself medically and made
decisions on my own with only the support of my local GP, who was
inexperienced with MS. I had also heard about a new MS drug called
Interferon that had recently become available and I wanted to know if
it could help me. That meant finding a new specialist and checking out
my prospects for possible treatment.
By now I was a different person to the naive young woman who had been
first diagnosed. I was more assertive. I knew my body better than
anyone and I wanted to be in control of my health care - I was no
longer going to hand over that responsibility to a professional, but I
did want their advice and guidance. I had become a great believer in
the fact that if I have to live in this body, it is up to me to make
decisions about how it is cared for. Taking steroids had not changed
the outcome of my MS, for instance, and going on them at my doctor's
insistence had made me very ill. I knew that from now on, if drugs
were offered to me I would have to make an informed decision about
whether taking medication would give me a long-term positive outcome or
just a short-term fix. I had worked hard to make my body relatively
drug-free, so I was not about to let a doctor reverse this situation
without just cause.
138 But the first challenge was to find myself a new neurologist, so my
friend Giuliana, who was studying medicine, did some research and came
up with a few options for me to investigate. Having chosen the name of
one specialist I thought worth trying and making an appointment, I
packed all the baby stuff into the car, put Prue in her car seat, then
disassembled my wheelchair and got myself organised. Any parent
understands what it's like to venture out with a small child, but for
me there was always the addition of a wheelchair to make the whole
undertaking more challenging. I checked the street directory and made
sure of where I was going. I had not been driving with hand controls
for very long nor driven into the city of Melbourne for even longer, so
I was understandably a little nervous at the prospect.
I took off early and arrived at the address of the new doctor with time
to spare, but the only parking available was in the street and I could
not find a disabled parking area. Eventually I pulled up,
double-parked and rang the doctor's surgery on my mobile phone. The
receptionist explained that there were speciali sed parking spaces back
up the hill. I looked over my shoulder and knew I would never be able
to get back up there in my chair, although the initial roll down would
be easy. I could also see from here that there were three steps into
the doctor's rooms, so I asked the receptionist where the disabled
access was and she told me to go around the back way. I drove round to
check it out.

"There are more steps at the back," I told her, becoming very
frustrated, 'so how can I get in that way when I'm in a wheelchair?"
Asking who had come with me, the receptionist cheerily suggested I get
my daughter to give me a hand up the ste psI I suspect she was thankful

there was someone with me so she 139 wouldn't have to haul me up the
stairs herself. True is two years old," I answered sharply, "and even
if she was twenty-two years old, I didn't give birth to her to give me
a hand because you don't have disabled access. Prue is my daughter,
not my carer."
Trying not to sound too rude, I thanked the receptionist and told her
that any doctor who speciali sed in MS but could not make his rooms
wheelchair-friendly could not help my family or me. I drove home
furious and mentally exhausted. What made me most angry was that this
lack of consideration is true of so many doctors, the very people who
are supposed to understand the implications of a disease like MS - they
should realise that people with MS often lack mobility and therefore
have special needs if we are to maintain our independence. The 'who is
looking after you?" question that I am still so often asked irks me no
end.
Eventually I decided to visit another neurologist, Dr Peppard. I was
strong, definite and clear on what I wanted and how I wished to be
treated. He was straightforward and responded well to my attitude and
needs. He also had wheelchair-friendly rooms. Dr Peppard wanted to
reinvestigate my illness, to search once again for tumours, and to
discover for himself exactly where the injury had occurred. He
convinced me to go into hospital for a new series of tests.
I did the neurological tango, had a spinal tap, an EEC (a test for
irregular brain activity), ate the disgusting food and worried about
what the results may be all over again. This time I had two MRIs and
they mapped out my brain and where the injury had occurred. I played
solitaire and sat alone in my room in an inner city hospital where
parking was difficult and so visiting was almost impossible. I was
lonely and nervous. I missed my baby and I missed Paul.
140 After a week in hospital, Dr Peppard came to my room with all-new
test results. He sat on the bed and announced that there had been no
changes. As far as the team of doctors could establish, mine is a rare
type of MS that seems to stay stable, which explained some unanswered
questions. It was beginning to become very obvious that there are no
rules when it comes to MS: no two people have exactly the same version
of the disease and mine was one out on a limb. The more time I spent
listening to my body, the less my symptoms were like those I read about
in all the MS books.
When I was first diagnosed with MS I had been so heat-depleted that I
would feel wrung out and exhausted all the time, but in recent months I
had not found this an issue. I would find myself a patch of sunshine
to sit in when I needed to warm up, and with well-organised daily
activities I had not become fatigued. My MS definitely did not seem to
manifest itself the same way as it had before and I realised that the
disease no longer controlled my life -- I was now in control of my
life, with MS being part of it.
I was still hearing about this new drug, Interferon -- it was in all
the information sent out regularly from the MS Society. It sounded
amazing, with some articles suggesting that it reduced the effects of
MS by 50 per cent. The trials were underway when I was in the care of
my first neurologist, but I had not qualified to take part in those

tests because out of the thirteen categories I had to pass, I satisfied

only twelve. The thirteenth was the inability to walk unaided for 100
metres, which of course I could do way back then, and so I had been
deemed ineligible to take part in the free trial.
Now Interferon was available to anyone who could afford to purchase it,

so Paul and I had decided to mortgage our 141 house and get enough of
this drug for a year. I was prepared to give anything a go, even the
thought of injections and the nagging flu-like side effects were not a
turn-off. Dr Peppard changed our plans with his honest appraisal of my
situation, explaining that this drug would be of little or no benefit
to me because of the damage that had already been done to the myelin
sheaths surrounding my nerves - they could not be repaired. I was
really disappointed that for me this was not the wonder drug I was
hoping it would be, but it was not the end, merely another hurdle, and
I was learning to take such setbacks more in my stride. Thankfully
now, years later, this drug is available to people with MS for little
charge, and it can make a huge difference in some cases, without the
accompanying financial burden.
Somewhere along this return journey to life I decided I wanted to go
back to work. Doctors often deter people with MS from working. A
person may have to spend time in hospital, they may on occasion need to
work reduced hours, or they may need a modified working environment to
cope with the daily expectations of their employment. The disease is
so unpredictable that it would be a hard ask of even an existing
employer to understand all the variations that could occur. What I
proposed to do was ask a potential new employer to accept this
unpredictability, and that seemed almost impossible, but I refused to
be deterred. When I was little it was obvious to everyone that I had a
determined streak, and somewhere deep down inside me I had rediscovered
that single-mindedness. It would seem I was going to need every bit of
it to get over this next hurdle: gaining employment.
142 I wanted to work again because teaching drama was an important part
of who I was before I got sick. In order to be a whole person again I
needed to be financially independent, to create working relationships
with people and to use my skills back in a school. I wanted a job.
The only problem with this brilliant theory of mine was that people
took one look at me in my wheelchair and made a whole lot of
assumptions about what I could and could not do. The frustrating part
was that my skills hadn't changed -- only the way I moved around was
different.
I started by reading the positions vacant ads. At the same time, Paul
and I got on the computer and worked on my resume. I mentioned
everything I had done work-wise in the past, but I did not disclose my
MS or the fact that I was now confined to a wheelchair. Maybe this
seems misconceived and even deceitful, but I wanted my qualifications
to stand alone. I didn't want any prospective employers to have their
decisions coloured by their own preconceptions of disabled people or of
the illness known as MS. My theory was that first I had to get in the
door for an interview and then I would be able to convince whoever was
on the other side of the desk to give me a chance.
I managed to swing a few job interviews, but people were so blown away
by the wheelchair that they didn't listen to what I was saying. One
particularly memorable interview was at a private school not far from
our house - it was for a part-time teaching position and exactly what I
wanted. I was confident I could do it, but initially had difficulty
getting into the building, and then the looks of disdain on the faces
of the interviewing panel explained exactly what they were thinking.
In this so-called enlightened world, where people house and get enough

of this drug for a year. I was prepared to give anything a go, even
the thought of injections and the nagging flu-like side effects were
not a turn-off. Dr Peppard changed our plans with his honest appraisal
of my situation, explaining that this drug would be of little or no
benefit to me because of the damage that had already been done to the
myelin sheaths surrounding my nerves - they could not be repaired. I
was really disappointed that for me this was not the wonder drug I was
hoping it would be, but it was not the end, merely another hurdle, and
I was learning to take such setbacks more in my stride. Thankfully
now, years later, this drug is available to people with MS for little
charge, and it can make a huge difference in some cases, without the
accompanying financial burden.
Somewhere along this return journey to life I decided I wanted to go
back to work. Doctors often deter people with MS from working. A
person may have to spend time in hospital, they may on occasion need to
work reduced hours, or they may need a modified working environment to
cope with the daily expectations of their employment. The disease is
so unpredictable that it would be a hard ask of even an existing
employer to understand all the variations that could occur. What I
proposed to do was ask a potential new employer to accept this
unpredictability, and that seemed almost impossible, but I refused to
be deterred. When I was little it was obvious to everyone that I had a
determined streak, and somewhere deep down inside me I had rediscovered
that single-mindedness. It would seem I was going to need every bit of
it to get over this next hurdle: gaining employment.
142 Getting on with the Game I wanted to work again because teaching
drama was an important part of who I was before I got sick. In order
to be a whole person again I needed to be financially independent, to
create working relationships with people and to use my skills back in a
school. I wanted a job. The only problem with this brilliant theory
of mine was that people took one look at me in my wheelchair and made a
whole lot of assumptions about what I could and could not do. The
frustrating part was that my skills hadn't changed -- only the way I
moved around was different.
I started by reading the positions vacant ads. At the same time, Paul
and I got on the computer and worked on my resume. I mentioned
everything I had done work-wise in the past, but I did not disclose my
MS or the fact that I was now confined to a wheelchair. Maybe this
seems misconceived and even deceitful, but I wanted my qualifications
to stand alone. I didn't want any prospective employers to have their
decisions coloured by their own preconceptions of disabled people or of
the illness known as MS. My theory was that first I had to get in the
door for an interview and then I would be able to convince whoever was
on the other side of the desk to give me a chance.
I managed to swing a few job interviews, but people were so blown away
by the wheelchair that they didn't listen to what I was saying. One
particularly memorable interview was at a private school not far from
our house - it was for a part-time teaching position and exactly what I
wanted. I was confident I could do it, but initially had difficulty
getting into the building, and then the looks of disdain on the faces
of the interviewing panel explained exactly what they were thinking.

In this so-called enlightened world, where people 143 are supposedly

sensitive to individual differences, the only subject that the two
people interviewing me could focus on was how I would get around the
school, not what I could offer the school educationally. Needless to
say I did not get the job.
I knew as a result of that day I would have to approach things
differently. I was still confident and continued to send off resumes
without disclosing my MS. On a couple of occasions I checked access to
the school and the buildings before the interview. Some of these
appointments had to be cancelled before I even got there, because I
knew I could not gain access in my wheelchair.
When you look carefully at our local urban environment, it amazes me
that it is still not very wheelchair friendly: flights of stairs,
narrow door access, a lack of appropriate toilets, furniture placed in
such a way that a wheelchair can't easily move around it -- little has
changed since the "Year of the Disabled' brought these practical
problems into general focus. But nothing stopped my enthusiasm. I
kept writing letters and sending resumes to the jobs I thought might be
okay. I also rang schools and people who I hoped might give me a
job.
Eventually I saw a job in the paper for a TAPE teacher, teaching
communications skills to people with special needs. It was an hour's
drive away from home, but I got an interview, and this time I took a
different tack -- I rang ahead and asked about wheelchair access. For
once, at the interview I struck it lucky. Firstly, they listened to me
as I detailed my experience and saw that the position suited my skills,
and secondly, they looked at me as a person and did not prejudge me
because of my wheels.
I got the job. Two days a week I was to drive an hour each 144 way, to
and from work. Prue would have to go to creche and I had to get
organised. Even if I thought I had the powers of super woman things do
take longer in a wheelchair. Getting dressed takes more time, going to
the bathroom, taking a shower. Think of a number and treble it.
People take things so much for granted when they are able.
I am an expert now and it takes me about one and half minutes to get
into the car with my wheelchair in tow, but I can't just zip down the
street like most people can. When I'm driving somewhere, everything
must be planned and anticipated so I can get to places on time. When I
got the job at TAPE, I hadn't had to be anywhere on time for two years,
so getting to work meant learning to arrange my time more efficiently.
Then, as now, I had a motto: anticipate everything, that way I'll be
prepared no matter what goes wrong.
So going to work meant being organised. Prue was only two and needed a
lot of looking after; Paul was still working at Gillette and travelling
interstate regularly. I was often on my own keeping the house going,
and keeping up Prue's routine as well as my own. I learned to cook in
bulk in anticipation of an emergency: if I was making pasta sauce, I
would cook double the amount and freeze half for another time. Another
of my mottos is never make a small mess in the kitchen - it's difficult
for me to clean up either way, so I might as well make a big mess and
make it worthwhile.

Each day when I unpacked Prue's creche bag, I immediately replaced

everything in it so it would be ready for the next time she went. To
this day I always lay out clothes for tomorrow, set the table the night
before, pack lunches in the evening, buy and cook things in bulk ahead
of time and have my cupboard well-packed. I have had to accept that it

is 145 Getting on with the Game impossible for me to quickly jump in

the car and grab a loaf of bread or a litre of milk if I run out.
Instead I have learned to anticipate unexpected situations.
This was how I proved myself to be a dependable worker. Being in a
wheelchair takes so much time out of each day that I made sure anything
I could do ahead of time was done, then whatever cropped up out of the
blue could be dealt with immediately and efficiently.
I was anticipating fatigue because I had suffered from it before. What
I had not realised then was that I don't seem to suffer fatigue in the
same way that many people with MS experience it. I do get tired,
angry, frustrated and upset, but most of the time I can continue to
function, even if it is at a limited level. Being well organised took
the pressure off me if I was feeling bad. It meant when I was at work,
that was all I had to concentrate on. After working for the day and
driving in traffic for an hour, I would get home, throw a pre-prepared
dinner into the microwave, bath Prudence and get her into bed, then go
to bed myself so that hopefully I would have a decent energy level to
start the next day.
I still work part-time and we are lucky to not be solely reliant on my
income, so I can work just a few days a week. When Prue was little I
worked two days a week, because a day off in between work days gave me
time to recover and get things into order, both for work and on the
home front. Since that time I have always negotiated, when possible,
to work near the weekend, because then Paul is usually home and able to
help with Prue if I'm exhausted after my teaching days.
I worked for two years at Northern TAPE in their Work Education
department, helping people with special needs 146 acquire the skills to
get a job. I taught basic numeracy, communication skills and first
aid. The students and staff responded well and my life at work helped
to give me back another facet of my independence. It also gave me
enough extra cash to buy a car of my own, a red Toyota Corolla, and fit
controls to it. It was secondhand, but perfect for Prue and I to race
about in.
Around this time, one of my high school friends, Simone, rang with a
rather interesting proposition. Simone was, and still is, an
advertising sales manager for Kerry Packer's Australian Consolidated
Press. Through her work with Holden, Australia's biggest car
manufacturer, she was part of a team that had come up with the idea of
doing an advertorial in The Australian Women's Weekly magazine.
The concept was to advertise a Holden car, which had been modified for
disabled people, and run a feature in the magazine following the life
of one disabled person and the impact made by the modified car. They
were looking for a young, attractive, disabled person with a family who
had a life that would be interesting to readers.
Simone suggested to the client that I fitted the bill. It was a paid
job and I would be able to drive and trial the car for three months at
no cost. Her proposal made me stop and think: as a young person I had
done everything in my power to be in the limelight, but to now put
myself out in public as a wheelchair-bound person was a very different
story -- this was not how I had envisaged myself gaining fame and

fortune.

I hesitated because flashing through my mind were the faces

of old friends from university, high school and my 147 days in the
theatre. I could imagine them being shocked to discover my disability
through the pages of a magazine article.
Then suddenly I heard a little voice deep inside me say, "Yes -- do
it!" Princess Anna had taken over the reins and decided that this was
the thing to do. It was my first opportunity to start breaking down
the barriers that haunted me about a disabled person not playing a
legitimate role in normal life, so from that moment I didn't hesitate.
The old me was seduced by the long-held dream of enjoying my fifteen
minutes of fame, while the new me saw it as an opportunity to overcome
the negative issues that my MS had first flung at me, so I decided to
get on with the game.
With this in mind I accepted the challenge from General Motors Holden
and drove their brand new silver Commodore. My first problem was
keeping it under the speed limit -- this car was much faster and more
powerful than my little Toyota. It was also awkward to park in a
disabled parking bay because it was so much wider than the car I was
used to driving, but boy, could that boot hold some shopping. A
representative from GMH came and talked to me about the hand controls
and their design, and I made some suggestions which he thought Holden
would take into consideration.
Then there were three photographic shoots: one with the whole family,
one with Prue, and finally one on my own. Once the magazine hit the
stands I was astounded to discover how many people had seen the
article. The publicity was in full swing and I was enjoying the
notoriety immensely: the princess was back. People I had not spoken to
for years rang out of the blue, while other people I had never met
stopped me in the street and chatted as if they had known me for years.
Most would ask lots of questions and give me encouragement, 148 while
many people wanted to know how they could get someone they knew who was
disabled to learn how to drive again. Everyone assumed that the car
had been given to me so were shocked when I told them that after three
months I would have to go back to driving my old red Toyota. But I
really enjoyed the hype.
I'm not saying that there weren't moments of regret in the process of
accepting myself as the disabled person whose image was printed so
permanently in a popular women's magazine. But the photos, and the
articles that accompanied them, were a positive step forward in that
journey of acceptance. Then as the weeks moved on and the magazine was
no longer there for people to browse through at the supermarket
checkout, the articles were read in magazines in doctors' surgeries,
and probably finally used to wrap fish and chips. Eventually one of
the kids at Prue's school snipped our photographs out of a magazine
during cutting and pasting time, and that's when I knew my fifteen
minutes of fame were definitely finished!
One great thing that came out of my affiliation with Holden was that I
was able to present one of the modified vehicles at the MS conference
that year. It was an excellent opportunity to show other people with
MS that driving is still possible -- deep down I hoped that I could do
for someone else what Tim had done for me years before.
Then out of the blue someone from MS Victoria rang me.

The society had

been ringing me occasionally over

but this was the first time I had
staff since that fateful day five
their support, and now it was for

the years to check on my condition,

had any meaningful contact with the
years before when I vowed not to seek
a very different reason. The MS

Society was planning 149 a media launch of a television awareness

campaign and wanted me to attend because of the publicity generated by
my magazine exposure. It seemed that many people had seen the
advertorials and rung the MS offices to get information on driving with
hand controls. My disability had worsened, but my attitude had
improved -1 had grown strong enough to face this head on and gladly
accepted their invitation.
The launch was held in a beautiful building on Melbourne's Collins
Street, a very flash occasion with designer drinks and nibbles. About
two hundred people were there to watch a preview of the ads and see the
print media ideas. Everyone was being very polite, sipping champagne
and speaking in hushed, almost reverent tones, and the new advertising
campaign was impressive.
I guess I was feeling somewhat brazen, fuelled by the success of my own
recent brush with media fame, so I insisted on being introduced to the
women featured in the advertising campaign, assuming they would have
been included on the guest list. Someone quietly explained to me that
the people in the ads were actors, well briefed on MS and its
implications, but nevertheless actors, not people with MS. I was
stunned and angry, because to me it was not only logical but also
imperative that real people with MS should have been asked to do the
advertisements. I pointed out as politely as I , could that I had been
an actor and that, although I had MS, acting was a skill I could still
rely on, given the opportunity. I was adamant that people with MS had
nothing to be ashamed of and should have been employed to do the ads.
Someone from the MS Society tried to smooth my hackles, explaining
their decision that it may have been too confronting for a person who
really had MS to see herself on 150 television over and over again, and
that if that person's condition deteriorated it could be devastating to
see herself as she had been before. As lightheartedly as I could
manage, I pointed out that I was sure that the actors from television
shows like Gilligan's Island and The Brady Bunch would also look back
at repeats of their shows and cringe. This was so unfair and I was
furious.
But the incident did have a positive side to it. A biotechnology
company called Serono was a key sponsor of that clay's events, and they
were represented by a woman named Catherine Johnson. Catherine
introduced herself and asked me about my life, attitudes, work and
family, as well as my obviously negative reaction to the use of actors
in the television presentations. Serono was about to organise the
annual MS conference, which was to be held in Victoria, and Catherine
was very interested in my ideas about people with MS.
As a result of my chat with Catherine at the media launch, I was asked
to take part in a short video entitled Working with MS" Anna Story. It
was an interview with a neurologist from the United Kingdom who visited
Australia for that 1997 MS conference. He was a true believer in
getting on with your life with MS and had done many clinical trials on
the effects of rehabilitation on people with MS. He very much
supported the idea of actively participating in work and family life:
all the things I was doing. The video was of him interviewing me in a
restaurant, and when the filming was completed the cameraman and film
crew commented that, out of the two of us, I seemed far more relaxed in

front of the camera.

After editing, the video was short, positive and full of strategies to

help people with MS or any other chronic illness 151stay in work or

confidently seek employment. It was made available to doctors and
patients in Australia, the United Kingdom, Canada and the United
States.
That year I also was quite involved with the MS conference because its
theme revolved around the idea of employment and people with MS. I was
asked to speak about my experiences of finding a job when the reality
of my MS was so blatantly obvious -- there was no way I could hide my
wheelchair from a prospective employer. I enjoyed explaining the
reasoning behind why my resume excluded any reference to my MS, thus
allowing my academic credentials to stand alone. The session generated
a lot of controversy and discussion, which I was proud to be the
catalyst for and pleased to take an active part in. With a disease
like this we are so often told to relax and wait for outcomes, so it
was great to see other people with MS excited and responsive about
something.
After the hype of the video and conference were over, it was time to
get back to routine and my normal weekly schedule: work, household
chores, social ising and looking after my family. Life was busy but my
health kept letting me down. I suffered a series of UTI infections as
well as injuries to my legs from accidentally dropping heavy things on
my lap, not to mention burns from hot water -- there always seemed to
be something. It was interfering with work and it frustrated the hell
out of me: just when I felt that I was doing an okay job both at home
and at work, my crippled body would let me down.
It was time to take stock of my health, but more importantly it was
also time to stop waiting for the elusive recovery period, which seemed
destined to never arrive. By all indications my MS was stable. I had
not suffered any further 152 flares but I was and still am a
paraplegic. The motor function in my legs is gone -- I can no longer
walk or bend my knees by choice -- although a strange aspect of my
disease is that I can still feel my legs, and that sensation can be
just a little sensitive in one breath, then extremely painful in the
next. I have no sensitivity to cold or hot from below my bust, and
this means I can no longer sweat or shiver so it is difficult for my
body to control its core temperature. I have poor circulation in my
lower body, so if I get a simple cut or abrasion it can easily become
infected and then ulcerated. A wound that would normally have healed
in a matter of days before I had MS could now take weeks to develop a
healthy covering of flesh.
I still have difficulty with bladder function, and I am reliant on the
use of a catheter and antibiotics to hold off regular kidney
infections. Emptying my bowel can be either difficult or too easy,
depending on the day: because I sit all the time, I suffer alternately
from constipation or diarrhoea. As a result of this I must always
carefully monitor what I eat and try to maintain a regular pattern in
my diet: lots of water, vegetables and fruit; bread; not too much meat;
not too many unhealthy things like sugar and fats.
Unlike a typical paraplegic, I can still feel my legs and wiggle my
toes, but the feeling is dramatically reduced. The best way to
describe this limited sensation is that it is as though my legs are
wrapped in many blankets. I can stand for brief periods by using my

arms to pull myself up and locking my knees into an upright position,

as long as I hold on and balance. And I can still enjoy sex.
One of the disadvantages of my MS is that I am always battling spasms

in my legs and lower back which give me 153 constant discomfort and
pain. The spasms are the reason I sometimes resort to taking
medication. It is not uncommon for me to be sitting in my chair with
my legs stuck straight out in front of me -- a strange-looking
position, and a particularly uncomfortable one. But the slight
advantage of having these spasms is that as a result I have no muscle
wastage in my legs, something which afflicts other paraplegics, and so
I reckon I still look good in shorts! As with everything, it is better
to find a positive than dwell on the discomfort of a situation.
154
CHAPTER 9
A New Set of Wings It seems like such a long time ago now, but I guess
it's about six years. I had been in a chair for two years or so when I
made some big changes in my life. I had started working again, and I
was driving, so it was time for the next step: I needed to get my
health back. It's worth remembering that I was a young woman who,
until diagnosed with multiple sclerosis, had only been healthy through
sheer luck rather than exercise and good diet. I smoked cigarettes and
drank alcohol. I ate too much unhealthy food and kept ridiculous
hours, the ultimate party girl. My idea of sport at school was coming
up with a sufficiently creative and convincing excuse to avoid any sort
of physical exertion -- I was one of those girls with a period every
other week and conveniently premenstrual the rest of the time!
Now, confined to a wheelchair, it was obvious that I could never be the
same person I had been before, but I figured that whatever was left of

that old body had to be kept in its best 155 possible shape. My basic
aim was that, if I were ever unfortunate enough to have another MS
flare, I would be fit enough to overcome the episode and recover as
much as possible, and at the end of it the rest of my body would be
physically fit enough to support the failed bits. And I also wanted to
stop worrying about tomorrow and make each day count on its own. To do
this successfully I needed my upper body to be strong enough to support
my lower body, so I was determined to regain some strength and get back
the stamina that now eluded me.
Everyone had told me from the time I was diagnosed that exercise was
impossible for people with MS, but of course I stubbornly decided to
ignore that advice. I looked deep down inside me and found the
momentum I needed to start out on this new, seemingly impossible
venture. It is hard to find the courage to do new things when you have
had so little confidence for so long, but it still amazes me how
powerful the human mind can be if you start with little goals and
slowly build on them.
I have found over time that all it takes is a start. Each morning,
with my goal for the day firmly in mind, I somehow found the energy to
get up, drag on some clothes and wheel around the block. That was as
much as I could do at first. It was difficult because I was only used
to lifting and transferring myself in and out of the car, but the
aerobic and cardiovascular strength needed to push my wheelchair along
the street was a different ball game altogether. I needed to be able
to push not only my weight, but also the eight extra kilograms of my
chair. And I had gained a lot of weight from the very passive
lifestyle I had led over the last couple of years so I had a hefty load
to haul, but I was determined to wheel distances.
156 At 6.30 each morning I headed off around the block. After that
first attempt, every day it became a little easier, and each week I set
myself a longer distance to travel in the morning. In the end what
restricted the distance I wheeled was not my health limitations but the
amount of time I had available to exercise. The change was incredible:
the stronger I got, the better I felt. Not only did I physically cope
with the daily grind of pushing my chair around at work and at home,
but my attitude also improved and my mood swings seemed to be less
dramatic. If I got an infection, to which I am still very prone, I
even seemed to recover faster.
And apart from all those obvious positives, my wheeling around the
block time was also a moment each day that was just for me. I didn't
have to share that time with anyone else, so I could clear my head and
think my thoughts, alone. Paul would be at home with Prue and I could
go out into the fresh morning, feel the dew on my face and the wind in
my hair. I had taken the first huge step towards gaining control of my
health, because I really wanted to make the best of what I had left. I
have not stopped going on my morning wheels, and the only days I do not
go wheeling are when I am doing some other physical activity, or those
days when the elements are against me and it is raining or too dark.
The more
became.
into the
young --

responsibility I took for myself, the better everything

The doubts I had had about my relationship with Paul faded
past. I was just as in love with him as I had been when I was
there were no fears left, nor were there any suspicious

thoughts haunting me.

about myself.

I was happy and, most importantly, I felt good

As a couple we seemed stronger too.

Our sex life has always been a

healthy one: I refuse to compare our expectations of 157 a 'normal'

sex life to those portrayed on television or in women's magazines
because I think it can only be defined by the two people involved.
Paul has always made me feel happy and good about myself when it comes
to sex and he still does. There have had to be some compromises during
the past few years, but I do not believe they are any different to
those made by other couples who have small children. I still get
tingly when Paul touches me and when we kiss I feel like a fifteen year
old again - the fact that my legs don't work is irrelevant.
Things seemed to be getting easier and better for me but, just as life
has a habit of doing, that's the time when something crops up to make
it difficult again. My job at TAPE finished and I was unemployed once
more. This may sound too dramatic seeing I was only working part-time,
but it wasn't about how much I worked -- it was about the fact that I
worked. Any woman who has left employment to have a child understands
what it is to like to give up financial independence and a career. You
go to a party and someone asks what you do: if you say Tm a mum', many
people brush this aside as though it doesn't count. Now, I don't
usually care what other people think, but the triple whammy of being a
disabled and unemployed mum was just too much for my ego to cope with it added extra insult to my so obvious injury.
So, determined not to be unemployed for too long, I scanned the paper
and tried once more to get a job. I kept telling myself that the TAPE
job had not been just a one-off -- I was convinced I could do it again.
After all, I had made a video to help other disabled people get a job.
Time to put my money where my mouth was. Wheelchair or not, I would
get another job.
There was nothing in the employment pages of the paper 158 to suit my
skills, so I approached Swinburne TAPE in Melbourne directly because
they had a similar department to the one I had left. By sheer chance
they needed a part-time person with my background and skills, and so
within a matter of weeks I was asked to take on a position as work
placement officer.
At first, the Swinburne campus was very inaccessible because the Work
Education department was situated in an old house. This made getting
in and out difficult, but the staff were happy to accommodate me
wherever possible. Eventually that site was demolished and we were
relocated to the third floor of a very wheelchair-friendly building.
I still taught communication, basic literacy and numeracy, and now
retail studies as well, but my new role also included the
responsibility of placing young disabled people in work experience
positions. Three times a year I had to convince a large number of
prospective employers to give students with the complexities of an
intellectual disability an opportunity to do a work placement in their
business. This was a real challenge, but I figured that because I had
done it for myself, I could do it for other people with disabilities.
The sorts of jobs I found for my students were two-week positions in
supermarkets, fast food restaurants, offices and factories, and the
hope was that the experience would lead to ongoing employment for
disabled young men and women who, like me, were searching for their
place in the world.

This responsibility pushed everything I had learned about myself and

the challenges of getting a job with a disability to the limit. With
my own experience as a guide, could I now convince employers to give
other disabled people a fair chance? Sometimes I was successful, other
times disappointed.

159 Persistence was my new best friend. It had worked for me, and it
worked on behalf of many of my student clients at TAPE.
As my fitness improved, so did my confidence. My life had changed in
so many ways that it certainly felt as though I was returning to some
sort of normality. I was busy and happy, juggling an interesting life
filled with many different elements. Paul had nagged me for months
about including swimming in my fitness regime. As a child I was a
fish, never wanting to get out of the water. Paul kept suggesting that
swimming would help me develop good muscle tone, and because the water
would support me, there would be little risk of hurting myself, and
certainly nothing to lose. But I was not as confident about trying
swimming as I had been about wheeling. My legs couldn't kick, I
couldn't roll my body and I was frightened that the bottom half of me
would drag the rest under the water and I would sink. My combined
physical failings seemed to me to be major reasons why swimming was not
a good idea.
But I did agree with Paul that it was important for Prue to learn to
swim. All Aussie kids need to be safe around the water, so when Prue
was about two and a half years old we took her to our local pool, a
huge swimming complex within walking distance of our house. On this
day it was full of people making their way up and down the lanes.
Teachers were giving lessons on stroke shape, diving coaching was
underway at the deepest end of the facility, and generally the place
was a hive of activity. Our family seemed small within it all, and
Prue looked so cute in her tiny baby bathers. It was time to give it a
go, sink or swim, as they say. I got out of my chair and into the
shallow water. I make it sound easy, but 160 lifting myself out of my
chair and into the water took a lot of courage and even more physical
effort. Paul and I played with Prue in the toddlers' pool, and at the
end of an hour I dragged myself cold and wet back up onto the side of
the pool, then into my chair.
That was as much 'swimming' as I did on the first day -- it had been a
small goal to get into the water and play, but I had achieved it. My
confidence was boosted and next time I would attempt more. Maybe
taking a little step each time I could eventually reach what seemed an
insurmountable final goal -- swimming laps in the fifty-metre pool.
In the following weeks I gradually gained strength and confidence, and
when I eventually tried the lap lane at the swimming pool I found that
Paul was right: I could float and my legs didn't sink, they just
dragged along behind me. My arms were so strong from wheeling that I
could still swim both freestyle and backstroke with some minor
adjustments. What's more, as I practised I found I could swim
distances: first five, then ten, then twenty, then up to thirty laps in
a session.
I still swim regularly because the wonderful thing about swimming is
the absolute freedom it gives me. Swimming is the only time that I am
not only free of my wheelchair but also of the awkwardness of my lower
body. The water gives me a weightlessness that nothing else can
provide. When I am in the water, I feel strong and powerful. I can
dive and float, propelling myself along and enjoying the warm sensation
of the water supporting my body.

Paul, Prue and I play for ages in the water -- games of chasey, or
diving for coins -- and I tell Prue endlessly complex stories about
water creatures and mermaids while we act out the characters. We still

go swimming as a family: Paul swims 161 in the fast lane, sprinting

fifty-metre laps, "while I work my way up and down the slow lane of the
pool where Prue, who is now eight, also swims laps, but much faster
than I can.
I get interesting reactions from other swimmers at the pool: people
happily chat away to me while standing in line for their turn in the
slow lane, but they are a bit shocked when they see me bum my way up
the stairs like an awkward seal and drag myself out of the pool. I
think they are usually blown away by the fact that I can swim so well,
but I can't walk.
Over the years we have gotten into the habit of meeting other families
down at the aquatic centre, having fun in the pool together and then,
after our swim, eating breakfast together and making it a social event.
When all the kids are swimming, we take turns watching them. We swim
around looking after each other's children and that gives all the
parents the opportunity to swim laps. It has always been a great way
to exercise, have a catch-up chat and share a friendly meal, with no
one needing a baby-sitter.
Over the years it has been interesting to deal with other people's
perceptions of me, and what some seem to believe is acceptable or
unacceptable for a disabled person to do. People even now are openly
shocked by the fact I am a parent, not to mention that I hold down a
job, have a loving relationship with my partner, plus all the other
complexities that make up my busy life.
I remember once when I first started working, Paul had to fly to
Queensland on business so Prue and I went with him for a short stay
with friends. On the way, travelling as a family, everyone seemed to
accept that I was in a wheelchair. But 162 when I flew home early with
Prue on my own, the reaction from other people was extraordinary.
Firstly the baggage clerk discreetly asked who was looking after the
little girl. I said that, as her mother, I was. He looked over my
head, obviously scanning the crowd to see who else was accompanying us
to look after me while I was looking after Prue! With a wry smile, I
explained that we were on our own. He quickly checked our luggage
through, obviously at a loss as to what he should do or say in this
situation.
Then, when we boarded the plane, I had the same response from the
flight crew. No one seemed to feel I was capable of looking after my
baby, my wheelchair and myself. I think on that flight from Brisbane I
single-handedly educated the staff about the capabilities of a disabled
parent. Of course they had dealt with disabled people before, but a
disabled parent was something else again. During the two-hour flight I
changed Prue's nappy on my lap or with her standing beside me, fed her,
kept myself and her clean, and made it all look reasonably easy.
Hopefully I opened their minds to never underestimating the
capabilities of a disabled person.
Sometimes it amused me to see people watching me so curiously, but
other times I wished they would mind their own business. Paul, Prue
and I had worked it out - why couldn't others respect that? In my
younger years I had been a show-off, forever seeking other people's
attention and wanting their approval. Now I seemed to have attention

whether I wanted it or not. I didn't travel solo by plane that time to

make people notice me or prove anything to anybody else -- I did it so
our family could have a holiday together. And maybe partly to prove to
myself that I could do it on my own without Paul having to help me.

163 I guess I am always proving myself, trying to be the same as I was

before I got sick and daring myself to try things that in the past I
may have chosen not to do. There is urgency in my life now. Perhaps
it's just that I'm getting older, but I believe my illness gave me a
need to do things today, not put them off for another day. My motto is
take life by the throat and don't hesitate or procrastinate -- do it
now!
Contemplating suicide helped me realise that life is such a precious
gift: every healthy, happy moment should be relished because failure to
do so is a dreadful waste. Good health is a bonus for me, not
something I take for granted. I have had so many hospital stays over
the past nine years that I have lost count. I have been so ill that I
have feared that I would die. I contemplated death so often that I now
spend every waking moment proving I can live life to the max, defying
my disability and sometimes doing crazy things that a lot of
able-bodied people would never do.
An example: when Prue was four, we had saved enough money to go to the
Whitsunday Islands for a well-deserved holiday. We stayed in a great
place that was wheelchair accessible. We swam in the pool, ate lovely
meals, watched movies on a large screen on the beach, drank cocktails
in the lounge, made new friends and had an utterly relaxing time. Paul
and I could deliver Prue to the kids' playgroup and venture out on our
own, as a couple. Tennis wasn't my thing before my MS, and that was
still the case. I had my mind set on other activities, each including
water and a little danger, and I was willing to give anything a go.
Paul has always stood by me, through good times and bad. When I was
down he did anything in his power to cheer me up, he fully supported my
going back to work and learning 164 to drive, and now he was willing to
watch me push my disability to its extreme. My first adventure was
taking a jet ski ride in the warm waters of the Great Barrier Reef. I
only needed arms and hands to control speed and direction so Paul, with
the aid of some friendly staff, lifted, pushed and then pulled me
astride the noisy beast. Then off we went, jetting in and out of the
waves, finding interesting patches of coral and schools of busy fish
beneath the water. It was a buzz -- the power, the sea and the
speed.
Our next adventure was looking at the reef's colours and creatures from
a pleasure cruise submarine. It was difficult climbing down into the
ship's hull, but the world that lay beyond the glass of the boat's base
was absolutely "worth the risks I took that day. Then late one
afternoon, while I was sitting watching Prue play in the toddlers'
pool, a parachute rose up and floated across the horizon with a person
harnessed to its base: I instantly decided that para sailing would be
my next challenge. If my mother had known what I was up to she would
have been horrified, but then again, perhaps she had come to expect the
unexpected from me. I was beginning to feel like the old me again, a
risk taker -- don't waste a moment, it may be your last.
I felt like a fish out of water lying on the launching platform at the
back of the para sailing boat. As I lay waiting for my turn, I had a
moment of hesitation thinking that this was crazy, but there was no
going back now. I pushed myself up by the strength of my arms and
dragged my stretched out legs behind me. They harnessed me up to the

chute and as soon as the parachute filled with air, up I went. Wow! I
could see forever and the power of the wind blew me around like a cork

in the water. There were islands below me surrounded 165 by the

magical aqua-coloured sea, small boats sailing past, and clouds forming
fluffy shapes above me. It was a wonderful experience, one that I will
never forget, but it relied so much on other people and expensive
equipment that I knew it was a one-off, a brief moment of exhilaration
that I would not be able to repeat very often.
We returned from our holiday to the normal life I had carved out for
myself. It was a good life and I was happy. Of course, MS and the
pain and depression that result from it will always be issues I have to
cope with, as well as the physical complications of living in a
wheelchair. But in the scheme of things I had a lot more to be proud
of than unhappy about. I had a loving husband, a healthy little
daughter, I was working part-time and I could drive again. I had lost
friends because of my MS, but I had gained many new ones along the way.
And I had worked hard to develop physical stamina and strength through
exercise -- that was a major plus.
In fact, for someone who many people felt sorry for, I had a lot to be
envied, but I still felt that my life was not complete. In the past I
had always been so busy with acting, singing and performance that I now
missed that selfish element in my life. I wanted something for me,
something that would give me a similar buzz to being in the air para
sailing although I realised that an extreme hobby like that one would
be somewhat unreasonable. Little did I know how totally unreasonable
my new passion would be once I discovered it.
I read an interesting article in Short Circuit, a magazine written by
people with MS for people with MS, about sailing. Sailing was a
romantic idea I had always held in the back of my mind 166 before MS something I would get around to eventually because of my love of the
ocean. Paul and I had owned a speedboat when we were younger and I
liked being on the water, but the speedboat always seemed so loud and
aggressive. But a yacht suggested calmness, conjuring up pictures in
my head of beautiful white sails, well-polished timber decks, striped
tops, navy jackets and a sparkling glass of champagne to welcome the
dusk. I thought that none of this was in my realm any longer, but if
becoming disabled had taught me anything it is that I should not assume
anything, nor let an opportunity slip past without having a try.
So I rang the number mentioned in the article and spoke to Colin
Lampshire, the founder and coordinator of an organisation called
Sailability. He talked positively about disabled people being involved
in the sport of sailing and added that the only necessary physical
requirement was that I could shake his hand on our meeting: I assured
him that I was capable of that. Colin said that there were three types
of people who came sailing. The first threw up all day and never came
back again. The second came along but thought it all seemed like too
much work and weren't interested in doing it again. And then there
were people who went sailing for the first time and were hooked for
life. It seemed worth a shot, so I worked up enough courage to go
along for a session.
I'm still not exactly sure why, but I wanted to do this on my own, so I
secretly plotted my first sailing adventure without telling anyone
where I was going. I waved Paul off in the morning, took Prue to Mum's
for the day and then headed off to Albert Park Lake in the centre of

Melbourne, my first solo adventure in a very long time. I wheeled down

the path to the dockside and just sat there. The lake looked 167

beautiful with the breeze blowing across the water creating gentle
rises. The sun shone brightly and glinted off the waves on one of
those exceptional Melbourne winter days. And all over the lake small
boats with brightly coloured sails skidded swiftly across the water,
powered by the silent force of the breeze. It was my idea of heaven.
I met Colin, a man who looked like the proverbial old sea salt: beard,
sunglasses concealing his eyes, peaked cap, sun-weathered complexion
and a big welcoming smile. I was under the misconception that this
first day would be an introduction, that I would be just watching other
people sail. Wrong. This old salt believed even more firmly in my
just do it' theory. So, after a short pep talk, Colin suggested I get
into a boat on my own. It had a moulded fibreglass hull, red on the
deck, white on the waterline. I got out of my chair onto the jetty,
slid across to the edge and dropped into the hull of the boat.
There I sat in the little red yacht, looking up at an expanse of red
fabric above me. Between my knees was a metal rod to control direction
and a white rope to pull the sail in and out. After a few more words
of instruction, Colin pushed me off the jetty and I headed out alone.
I was terrified and exhilarated all in the one breath. An instant of
panic. A moment of wonder. Not just an idea anymore -- definitely
heaven.
I can barely describe what it was like for me sailing that first time.
Since being diagnosed with MS, everything I had attempted in or out of
my wheelchair had been done with a previous experience in my mind. I
drove a car having driven before; I cooked, worked and lived always
with a comparison of a similar previously experienced situation jumping
into my head and guiding me. But sailing was totally new, and 168 I
had no preconceived ideas of what it should be like or how to do it.
On that first day out in a boat on my own, I was ecstatic. I wanted to
yell out to the world: "Look at me, look at what I can do on my own,
despite everything. Look at me!" I felt more alive than I had in
years.
Colin had suggested I try to get to the other side of the lake and back
again, adding that if it looked like I was in difficulty, he would send
a rescue boat over to help me back. I was armed only with the start
lesson I had had on the jetty but I wasn't nervous, because I knew I
could swim strongly if things got seriously out of hand and I capsized.
But I was determined to sail back to the shore, not swim. The three
clues Colin had given me were to think about where the wind was coming
from and where I wanted to go, then angle my sail towards getting
there.
It sounded simple enough, but it wasn't easy, and it took me ages to
get back to where I had started. I juggled with the sail and tried
swinging the joystick left, then right, letting the sail way out and
then pulling it in tight. When I finally arrived back at the shore, I
was so excited I couldn't stop talking.
"Did you see me? How was I? Did I look like I was doing okay? When
can I have another go? "All I could think about was doing it all over
again.
Sailing that first time was one of the most thrilling experiences of my

life. Everyone has a different passion that blows him or her away: for
me it's sailing. It's the combination of uncontrollable elements -wind, water and the weather-which must be harmonised with the human
body, mind and spirit that gets me. I was totally thrilled when Colin
explained that Sailability met regularly and I was welcome to
participate as often as I wanted. I drove back to Mum and Dad's to

pick up 169 Prudence sporting the biggest smile I had worn for years.
I had finally done something for myself, something exciting and full of
risks. I was so proud I felt I would burst at the seams.
That night I couldn't wait for Paul to get home. As always I put our
dinner on the table, and when Paul asked the usual question -- "What
did you do today?" -- he expected the same old answer. Instead he got
a surprising: "I went sailing." I beamed, then exploded with chatter,
reliving each breathtaking moment out on Albert Park Lake. Paul was
totally surprised and absolutely delighted.
Since that first day out on the lake, I haven't looked back. At first
I went each week to the Sailability club, and alongside other people
with disabilities I would sail away the hours on Lilydale or Albert
Park Lake. Prue would come too and wear a little life jacket out in
the boat, or stay on the shore and play with one of the volunteers.
Each time I tried to improve on the previous week: better speed, better
sail shape, choosing more effective angles to get around the buoys. I
continually challenged myself.
The next few months were spent improving my skills and efficiency in
all areas of my life, as well as juggling job, home duties, and kinder
pick-ups so I could go sailing -- I was hooked! Sometimes it felt like
each waking moment was spent getting ready to go sailing or recovering
from time out on the water. I would be cooking dinner and burn it
because I was planning the next day's sailing adventure. When I met up
with friends or family, my lunch conversation would find its way to the
little boats on Lilydale Lake and my recent exploits out on the water.
I knew that I was seriously addicted to this newfound sport when I
found myself trimming the washing on the line so it would pick up the
breeze most accurately and blow out in a 170 curved shape, best for
speed in a sail. But the washing dried quickly and that was a plus!
Thank goodness I no longer suffered from fatigue because the lifestyle
I was now living was more complex than that of many able-bodied people.
Finally I felt complete. I reckoned that my MS was a fair enough
reason for me to be selfish now and again, and sailing made me feel so
good. My life had passion again.
Life in a wheelchair can be a cruel thing. At first it was difficult
to deal with emotionally, but eventually I realised that my chair does
not confine my mind or spirit, it can only limit my body. Over time
I've learned to live beyond the expected rules about what a wheelchair
will and will not let me do.
But we are creatures who as a society like things to be neat and tidy
and do not cope well with exceptions to the rules. Because I live my
life from a wheelchair, society judges me to be an abnormality and
sometimes treats me as though I am a fool. Other people have the
audacity to feel pity for me when they have no idea what my life is
really like. My life is full and interesting and busy - I certainly
don't have time to make judgments about other people, so I wish they
would stop making assumptions about me.
I am continually bemused by the number of people who shy away from me,
or encourage their children to do so, simply because of my wheelchair.
We supposedly live in an enlightened world where people are educated
about disabilities and differences, but it amazes me that some people

still behave as though my disability is contagious. To try and combat

these misconceptions, I consciously go out of my way to appear happy

and approachable. I smile and look directly into people's 171 faces,
hoping that each time I do this I open a little doorway into their
minds so they see I am no threat to them or their children.
Other people are curious and ask questions, so I try to answer as
truthfully and politely as possible. Sometimes these questions seem
extremely intimate to me, but usually I try to be polite and answer
quite candidly, despite their intrusive nature. But I admit that
occasionally, when I have had enough, I just ignore them and smile, or
behave as though I did not hear the question. Paul, Prue and I joke
about me going out of control in the supermarket one day and fulfilling
everyone's fears: wheeling up and down the aisles, biting children,
knocking people down like pins in a bowling alley, and ranting like a
mad woman. But of course none of that is ever going to happen.
At school I explain to my students that MS is not a contagious disease,
rather something that just happens: it was my bad luck that it happened
to me, but they can't catch it. To make them laugh and break the
tension, I always add: "Not even if I spat on, licked or bit you!"
It's important to me that they understand the reality of MS and are not
afraid of my illness. If people are frightened that they are at risk
then they will never accept me for who I am. I do not want to create a
situation like that. I want people to relax and learn to know and
accept me as an individual despite my disability. In reality I do too
much of this, I know that. I can spend so much time convincing others
and myself that I am as good as everyone else that I run myself ragged
in the process.
And then there's Prue. I will not let Prue push my wheelchair because
she is my child, not my carer. Sometimes she wants to help me, but I
deter her from doing this too much.
172 I explain to Prue that by walking next to and talking to me, she
gives me more strength than if she were physically pushing me along the sense of pride that she gives me is far more powerful than any
push. Mow that she is older, Prue sometimes does help me get through a
doorway or up a step, and I think this not only helps me but also
empowers her with a sense that she can make a positive difference to my
life.
I will occasionally let Paul push my chair, but only when I am tired,
or a hill is really steep, or an incline is so dramatic that he needs
to stop me from falling or my chair from running downhill. This is
just practical and not about ego or strength. Paul is strong and very
capable of lifting and carrying me around -- I sometimes say in jest
that I didn't marry him just for his good looks, I also fell for his
muscles -- but it does annoy me when people assume that, because he
can, Paul will lift me up stairs or over difficult surfaces. He does
this only when it is absolutely necessary, not just to save me time or
effort. I suppose people forget that carrying me is risky, not only
for me but also for the one who is lifting the dead weight of my
paraplegic body. It is not by chance that my chair does not have
handles at the back -- there are no handles by design, because I want
to discourage people from pushing me around. One more conscious choice
in my move towards absolute independence.
It's interesting to think back Co when Prue first headed off to

kindergarten. I went along on orientation day and, unsurprisingly,

many of the parents were not sure how to take me at first. The kids,
on the other hand, were curious and outspoken about my wheelchair and
my inability to walk. When I later went along on my first kinder
support day, the other parent on duty and I were to help with

activities and prepare 173 morning tea. The kids watched in awe as I
moved around their now familiar space, in and out of the kitchen,
cutting up fruit on a board on my knee, picking up toys and chatting to
the little ones. Eventually I moved over to an undersized table and
got out of my wheelchair, then encouraged them to get in and take it
for a quick spin.
Each of the kids had a turn before moving back to their other
activities, not so curious and a lot less frightened by my wheels.
From that moment I decided it was not only my responsibility but also
my duty to make wheelchairs less threatening to the community in
general. I realised that day that to make this a better world for Prue
to grow up in, with her mother in a wheelchair, I would have to work
actively towards breaking down the traditional barriers that plague
disabled people. I had argued the rights of my disabled students in
the work placement integration program, but now I had to take a
different approach and change society's attitude towards people with
disabilities by my example.
To have the impact I was aiming for I would need to be forthright and
answer questions as honestly as possible in my attempt to educate
people and make our world a more understanding place. If little kids
could learn now, hopefully the next generation would not have such
preconceived ideas of what people with disabilities can and cannot
do.
Now I realise what a milestone that was. I had made so much progress
in dealing with life in a wheelchair and becoming a member of the
disabled community, but now the idea of going out there and somehow
making myself noticed with a view to educating people seemed like a
huge step. For so long I had hated the chair and my illness -- now
here I was thinking about making myself an example for others. Maybe
174 it was just my fairy princess ego resurfacing, but at that moment I
felt close to the Anna that I had been before I developed MS.
The main thing was that I had grown up. It was not just about me
anymore - it was about Prue and the sort of person I wanted her to be.
I did not want her to be embarrassed by my disability and, as often as
possible, I wanted the world around our family to be accepting of it,
not ill-informed and judgmental. How I was going to pull off this
minor miracle was part of the unknown, but I was no longer prepared to
put up with ignorance and bigotry. Somehow I would find a way to make
people listen to what I had to tell them and change their perception,
not only or me but of disabled people in general.

175 CHAPTER 10
Polar Bear I had gone out in a boat for the first time in June 1997,
and by October of that year Colin, my sailing coach at Sailability, had
suggested I enter the Australian Masters Games, to be held in Canberra.
Colin was only taking two other Victorians to compete and it was a
huge compliment to me to be asked as well, but I was not convinced that
I was really ready to race at this level. The only sort of sailing
competition I had been involved in was racing on the lake. Once a week
we would put marks out and race across the water for an hour or two that was the extent of my experience. But Colin felt that competition
was what I needed to improve my sailing skills.
Apart from my lack of sailing experience, the other factor holding me
back was that I would have to leave Prue behind in Melbourne. I had
never been away from Prue other than for my stays in hospital, but
after discussing it with Paul, we agreed that I should take this
opportunity to compete for the 176
first time at national level, if only this once. It was such an unreal
concept for me, remembering that I had never competed in any sport
prior to this -- I didn't even watch it! I was the girl who had spent
her youth avoiding playing in the school's netball team.
I arranged the time off from work and helped Paul organise a schedule
for his days while I was away: while working full-time, he would now
have the added responsibility of taking Prue to kindergarten and caring
for her on his own. Then I boarded a plane for Canberra and headed off
for ten days, eight of which would be in competition. I sat on the
flight surrounded by other competitors from a variety of sports. I had
never experienced anything like this before - the plane was full of
athletes, all buzzing with excitement. I was excited too, but I felt
out of my depth. Many of the people around me seemed ready to party,
while others were focussed on the upcoming competition. Either way, I
didn't really fit the mould.
Competitors in the Masters Games must be over a specific age in their
sport of choice, and it is for both able and disabled athletes. The
minimum age in the sailing division was 30, and I was 34. A lot of the
competitors had been highly successful athletes when they were younger,
and that killer instinct was still obvious in their attitude to the
event, while others, like me, were contesting for self-improvement in
their chosen sport. Many competitors were going to the Masters because
they enjoyed being part of a team. Faced with all this enthusiasm, I
was in a daze when I got off that plane in Canberra to be met by Colin
and Stephen, a fellow sailor who would also be competing. There were
hundreds of people arriving at the airport that day being met by

friends and colleagues, 177 and I learned from Colin that there were
ten thousand competitors coming to Canberra that week -- and I was one
of them. I could barely believe that I was a part of all this, but it
felt good.
On day one we practised on Lake Burley Griffin where the conditions
were good, but the water was cold. We practised starts and I headed
down the course, getting a feel for it. I struck only one problem in
that warm-up, and it happened as we rounded the first buoy: I went the
wrong way, right instead of left. No one had ever explained to me that
when the start boat raised a red flag at the beginning of a race that
meant a 'port' (right) rounding of the buoys on the course, and the
opposite if a green flag was displayed.
That night, back in the hotel unit, Colin explained the start boat
flags and the next morning I bought a book explaining all the racing
rules. The sailors around me knew what they were doing - these were
guys who had been competing for years. I was racing in an Access
dinghy, a type of sailing boat that can be sailed by both able and
disabled people. It is a simple and unsophisticated 2.3-metre yacht
dependent on the skills of the sailor to develop good racing speed.
All the competitors in my class were disabled, and there were only two
women, including me.
The next day it was time to celebrate the opening of the Masters Games
with a formal ceremony held at the end of registration. We visited the
Australian Institute of Sport to collect our competitor information
packs and complete the forms for competition and I was in awe. Sports
of all types were to be contested over the coming week: netball,
basketball, sailing, swimming, athletics, soccer, baseball and others I
had never even heard of before.
178 In the evening, wearing our competition shirts, we marched (or
wheeled) to Lake Burley Griffin, all ten thousand of us. There was a
sea of people, with groups gathered behind flags depicting their chosen
sport. Formal opening speeches were delivered and then the music and
festivities began. There was a light show with a display of hot-air
balloons, blowing their burners in rhythm to the music. Singers,
dancers and acrobats performed to welcome competitors and spectators to
the games, and fireworks finished off the night. I was so thrilled to
be a part of such a celebration and to realise that this was a serious
competition. I had to race in the morning, so Colin drove us home and
I went to bed the most excited I'd ever been since my wedding.
We arrived at the lake at 8.30 each morning and left after 7 each
night. It was exhausting and exhilarating at the same time. The most
amazing thing was that I was actually winning some races, beating the
boys and at least placing in most of the races. An article in the
Canberra Times described me as an outsider, a black sheep - I liked
that tag. Every time I rang Paul I had fantastic news to pass on
because I was unexpectedly holding my own amongst steep competition these guys were serious sailors with years of experience and I was
beating them!
At the end of what was an exhausting regatta, I flew home early on the
Sunday night because I had to be back at work the following morning.
The final results had not been posted by the time I had to leave so I

was unaware of my overall performance. At the presentation dinner that

evening the awards were given out and scores announced for all the
yacht classes. I had come fourth overall, but because I was the
first-placed woman I received a gold medal. Colin accepted it on my
behalf from Ian Murray, one of our victorious America's Cup crew.

179 It had been such a wild time and I had enjoyed the experience
immensely, but to win a gold medal was amazing. Paul was so proud of
me, and Prue took my medal to kindergarten for show and tell. My
parents beamed because having me excel in sport was a totally new
phenomenon for them, and my friends were equally amazed and proud. The
funniest reaction was from Annette, my old housemate and friend from
high school. Annette, now a high school sports' department
coordinator, was totally honest when she told me that she could have
believed this victory of many people, but never of me. I wasn't at all
offended by her reaction because I had surprised myself too.
It took me quite some time to come down from the high of winning that
gold medal for sailing, but I did have to get back to reality -- I was
already back at work. My win seemed to take life to a higher level
than normal, but of course sometimes it hits a low for one reason or
another. Mood swings have never left me, and perhaps MS has
highlighted my sensitivity to those feelings. When I am high on the
energy of life, it's better than any drugs I have ever been given for
my illness. But in contrast, the lows are awful - I call them blue
days, when it all gets too much and the pain and the frustration of my
disability make me want to crawl into bed and cry the day away. Over
the years I have learned that after every low there will always be
something positive in the future, and if it is not happening yet of its
own accord, then I make it happen. After experiencing such a high from
my success in the Masters Games, I expected a low to crash me back to
ordinary life, but as it turned out there was no time for that to occur
just yet.
An unexpected phone call came from the north, offering 180 me an
opportunity that stemmed from the MS Victoria advertising launch.
After hearing me voice my opinion so loudly about people with MS
representing themselves in media presentations, Robyn from MS
Queensland was ringing to see if I would read the script for an MS
Read-A-Thon video and consider acting the lead role. The twenty-minute
story aimed to explain to primary school students the impact of
multiple sclerosis on people and their lives.
I said I would love to read the script, but I would only be involved in
a production that showed that MS could have a positive side, that
people can still live productive lives despite the crippling effects of
this illness. I also thought it was important to include some humour
so little kids were not too threatened by the idea of such an illness.
I was afraid that any potential audience might include a child who had
a family member or friend who was dealing with the onset of the
disease. MS has had a devastating effect on my health, but it has not
ruined my life - the only thing that had the potential to do that was
my attitude, my non-acceptance of my disability, but I did not want
that represented in a production aimed at kids.
I read the script and liked the story line - it was written at a level
that kids would not only understand, but also enjoy. And I guess the
process reminded me of old times: I was an actor reading a script and
considering whether I would take the part. The plot was that a new
woman had moved in to a neighbourhood, and the kid next door was
frightened of her because she was in a wheelchair. He was also afraid
because he regularly heard unexplained shouting coming from her house.
Eventually the young boy learns that Karen, the character it was

proposed I play, had MS and was also a voice and 181 drama coach. The
story all seemed so familiar and oddly connected to me and my life with
MS that I happily agreed to be a part of the film. So just like times
long gone, I suddenly had lines to learn.
Paul, Prue and I flew to Queensland for the shoot, which the producers
predicted would take between two and four days to film. I suspected
that they were concerned about my acting ability, not to mention the
limitations they imagined may be caused by my disability, so they were
pleasantly surprised to see what I could do. I was very well prepared
and familiar with the expectations of an actor on a set. But the fact
that they were making the video in Queensland did complicate things a
lot, because it was incredibly hot and humid and we had to work in a
very small flat, which they used as the set. And, as with all film
projects of this nature, there were many people involved who all had to
squeeze on to the set at any one time.
On the first day we were all crammed into the tiny living room of this
small home: the cameraman with his assistant, two sound operators, a
designer, the director, an electrician, the lighting man, a make-up
artist, Robyn from MS Queensland and three actors. It was stinking
hot, and every time a car went past we had to stop filming because the
noise would interfere with the sound recording. We did an incredibly
long day, starting at six in the morning and finishing well after eight
in the evening. They had to light outside the windows so it still
looked like daytime. I fell into bed after that, only to start all
over again the next morning with another six o'clock call.
After a few intense days I flew home with my family to await delivery
of the edited version of the video and try 182 to get back to a normal
routine. But in the meantime, MS Queensland asked me to make a return
trip to film the television commercial that would accompany the video.
This was a great compliment because I was not originally cast for the
TV advertising, but they were apparently so happy with my performance
in the video that they rewrote it to include me. The 30-second ad
aimed to encourage school students to get involved in the MS
Read-A-Thon, then another quick shoot was to produce a follow-up
commercial, reminding students to send in the money they had raised
once the Read-a-Thon had concluded.
I flew up to Brisbane on my own to record one minute's worth of
videotape and came home the next day. In both productions I had some
say in what I wore, dependent on the director's approval, and I chose
to wear shorts. Many disabled people don't show their legs -- there's
the classic image of a rug tucked around the legs of someone in a
wheelchair -- but I decided to show my ineffective legs to the world.
As a result of all the spasms I have to endure, I don't have any
wasting of my leg muscles, so in fact my legs look the same as they
always have. When the ads went to air many people asked why had I worn
shorts -- my answer was simply, why not?
I am a great believer in looking good to feel good, or at least better,
and I learned early in my MS experience that no matter how bad I felt
on the inside, it improves people's reactions to me if I always look my
best on the outside. And of course it makes me feel better. I have
had more hospital stays in the last ten years than many people ever
experience in a whole lifetime, and the worst thing that people can do

is comment on how terrible I look.

So when I go to hospital I always pack a hairbrush, a clip, 183 my

make-up and a mirror. Over the years I have learned to apply eyeliner
and mascara one-handed, usually because the other is nursing an
intravenous drip. If I can't put my makeup on myself then one of my
sisters will brush and braid my hair and put gloss on my lips. It's
little things like this that make me feel better, not physically but
emotionally, and when I feel better, I look better -- it's a happy
circle.
Of course this also applies to clothes. It would be easy for me to
wear track pants and sloppy windcheaters because it is hard getting
dressed each morning, and sitting in my wheelchair in tight clothes is
uncomfortable. It is impossible for me to wear short skirts because
they ride up too much - not a good look -- but I do wear longer skirts.
Just because my legs don't work doesn't mean I should be embarrassed
about showing them. But I refuse to look like I don't care and anyway,
I don't want to look ultra casual all the time, same as anyone. If I
want people to take me seriously, I play the game and dress to impress,
and if I really want to be noticed I wear bright, outrageous clothes.
This was also one of the reasons I wore shorts in the TV ads: I refuse
to be embarrassed about my legs and so on television, all around the
country for just a few moments each day while those ads were running, I
made a little statement about how I feel about my body. MS may have
devastated my body's ability to move effectively, but it will never
take away my pride in myself. I have exactly the same attitude to
dress now as I did when I was able-bodied -- it is just more difficult
to dress appropriately for a chair. I know people see my wheelchair
first and make judgments about me before they even look at my clothes
or listen to me speak, so it is important that I feel my clothes are
appropriate to the occasion. As 184 a result I feel strong and in
control, because the person I dress to impress is me.
Not long ago I went to a formal ball where I met up with a woman I had
not seen for many years. In preparation for the ball I had done my
best to look good: a new outfit, fancy hairdo, painted nails and a nice
make-up job. But this old acquaintance was shocked. She could not get
past the fact that I was in a wheelchair at a ball and kept making
inane comments about how well I looked, almost as though she expected
me to be wearing an old-fashioned dress with a mohair rug across my
knees. I felt like telling her that I am still Anna, I still have an
ego and pride in my appearance -- just because my legs don't work does
not mean I can't be vain. I still want to be attractive for my husband
and to feel good about who I am and how I look. Nothing has changed in
my perception of who I am, who I can be. But of course I kept my mouth
closed and just smiled. Good manners prevailed.
If I had thought that people noticed me after the Women's Weekly
article, it was nothing compared to the reaction I got when the MS
Read-a-Thon video and TV commercial were released. Now I was truly a
legend in my own lunch box! People recognised me wherever I went.
Children in particular would come up and speak to me without feeling
any trepidation about my wheelchair. They would call me Karen and ask
about my fictional neighbours.
I was overjoyed by this reaction from the general public because it was
obvious that through the video and TV ads I had made positive inroads

into breaking down barriers and attaining the goal I had set myself.
Working with the MS societies in both Queensland and Victoria had
enabled me to shed
some light on the realities of having MS and made thousands of adults
and children understand my disease a little more.
This time family and friends, old and new, rang from all over Australia
to say they had seen the ad or video. Even some of the sailors I had
met at the Masters Games rang to say they had seen the ad on the telly
and how good they thought it was. I was thrilled at these reactions
and it gave me heart that I was doing something so positive for all
people with MS.
A new year, 1998, was soon upon us and my little girl was getting ready
to start her first year at primary school. It was time to stop all the
hype and support Prue through those first important weeks of settling
in. And of course there were new barriers to be broken before Prue's
school life could begin: the first was that the school had to build a
ramp into her classroom so that I could have access along with all the
other parents. But our transition to school was not fraught with too
many problems because most of the parents and Prue's friends had come
from kindergarten, so there were lots of familiar faces in the crowd
and a happy feeling of acceptance.
A few weeks into Prue's first year at school, it was time for my second
foray into competitive sailing. The National Access Dinghy
Championships were also to be held in Canberra on Lake Burley Griffin,
and there were a huge number of competitors. This was an open regatta,
men and women, able and disabled, sailors who were all competing to
win. There were four grades of competition and naively I entered into
division two, not knowing that I would be up against the top standard
of competitors as at this regatta both divisions one and two were on
the water at the same time. Without realising it, I was being overly
ambitious.
This time Paul, Prue and I packed up and headed interstate 186 together
for the three-day competition. There were a few familiar faces among
the assembled sailors but there were many more new ones, because unlike
the Masters, younger people competed in the Nationals too.
Again we raced from morning till night and it was an incredible drain
on my stamina, but I also thrived on the adrenaline. Unbelievably, I
won nearly every race in division two, my worst placing over the three
days being a third, and I actually beat the division one, all-male
competitors who were out on the water at the same time. I was
presented with a gold medal for my efforts by Sir William Deane, then
Governor-General of Australia, and this time I was there to receive it
in person. What a thrill that was, especially having Paul and Prue
there to share my triumph. When we got home to Melbourne, the local
paper came and took some photographs and wrote an article about my win.
I was the princess of the waves!
A couple of weeks later, still early in 1998, a letter arrived
unexpectedly from the Australian Yachting Federation, asking me to
participate in preliminary trials and classification for the 2000
Paralympics. Sailing was to be included in the Sydney games for the

first time so there was no history to the team. I was totally shocked.
Sure, I had had some success at the Masters and the Nationals, but I
was, and still am, such a novice sailor compared to the blokes I had
competed against. But the development of the squad had to start
somewhere and my recent success looked very good to the selection
panel. Getting classification for my disability, racing and meeting
the coach of the Australian team would mean a ten-day stay in Sydney.

This was awesome. Paul was blown away, Mum and Dad 187 were bursting
with pride at my unexpected success, but I was frightened. I had been
sailing for less than a year and out of the blue I was being given the
opportunity to compete at this incredibly elite level of sport. I
wasn't sure what I should do. Going to Sydney for that long meant
organising time off work and a costly stay, plus it meant leaving Prue
and Paul behind. Who would look after them?
As Prue had just started school I felt that she needed me to be there
to help her feel confident in those first few months of school. But
Paul of course convinced me to go. He argued logically that this was
one of those moments in life when, if I did not give it a go, I could
regret it for the rest of my life. Colin's attitude was that this was
all good experience for me, so I got on a plane once again and this
time headed to Sydney.
Firstly I had to be assessed to see if my disability qualified for
Paralympic participation. One man who had been racing over many years
and beating the squad of sailors was rejected: he was missing a thumb
and the medical board deemed this an inappropriate level of disability
to be classified as a Paralympic competitor. After thorough medical
assessment by a group of doctors and sports medicine professionals, I
was classified as a paraplegic competitor. Amputees seemed to rate as
less qualified, while the one partial quadriplegic amongst us rated as
the most qualified. I had never before experienced such political
comparisons for people who participate in disabled sports, and it
seemed totally unfair to me to compare disabilities in this way.
However, this seems to be the only solution. We learned after the
Sydney Games that some overseas people attempted to compete without
proper classification, so Australia's methods seemed to work well. The
process became a great topic of discussion among the competitors at the
Nationals.
188 Unlike the sailing competitions I had competed in to date, the
Access 2.3 dinghy was not the class of yacht in which I would be
sailing if I took up this ultimate challenge. This was a very
different class of boat indeed: for the trials we were to race in a
fleet of 2.4-metre yachts owned and maintained by Sailability, New
South Wales. I had never seen one of these before, let alone sailed in
one. Basically the 2.4-metre yachts are a scaled down version of a
12-metre boat, similar in design to the boats sailed in the America's
Cup competition. These boats are built for speed and racing.
During the trials the participants stayed in and around the Royal
Prince Alfred Yacht Club in Pittwater, a beautiful part of northern
Sydney. I shared a room with Cherie, the only other female
participant. Each morning a bus would pick us up and we would travel
to the club with a wild bunch of blokes from Perth who told filthy
jokes, played hard and drank even harder. These guys were old salts if
ever I'd seen them: men with well-weathered faces who knew the sea as
their friend sometimes, but just as often as their master.
They all had nicknames, like "The Black Douglas', who was the oldest of
the team. He was famous for his knowledge of sailing and infamous for
his drinking. He was the rules man and knew the International Yachting
Federation rule-book by heart, so competitors often asked him to
clarify rules and judgments at the end of each day's racing. The

people I met through those Paralympic trials in Sydney were amazing,

and most of them had acquired their disability through some excessive
behaviour which resulted in an accident, like riding motorcycles,
parachuting out of planes, or just driving cars too fast.

We raced for day after endless day, each of the competitors 189 trying
to improve their results and move closer towards competing in the
Paralympics. I was barely holding it together because the boats were
complex and I found it extremely difficult to keep them stable. The
conditions stayed fair with light winds and calm seas, but it was a
very gruelling week for me -- the toughest I had so far endured in a
boat.
There were no winners or losers in this regatta, only the challenge of
getting started on the road towards 2000. The series of races was an
opportunity for the best disabled sailors in the country to strut their
stuff, a week of high-class sailing to begin the selection process and
weed out those who could not make the cut. The coach, Lachlan Jones,
gave us a huge pep talk at the conclusion of the week, offering us the
chance to possibly be involved in the upcoming Paralympics. The next
step would be to get ourselves a sponsor and a boat for our journey
towards Sydney in 2000.
I came home to Melbourne stoked and totally focussed on the
Paralympics, as if I didn't already have enough to do in my life. Prue
was still little, I was working two and a half days a week, and now I
was considering becoming involved in a highly competitive level of
sport. Paul had taken a new job as general manager of a stationery
company, so he was very busy and had the responsibility of running the
whole business resting on his shoulders. And now I wanted this, to be
involved in the Paralympic trials - I had to be crazy to even consider
taking it on.
Paul and I could not financially afford this commitment on our own: it
involved purchasing a boat, a trailer to move it to regattas, special
clothes that I would need to wear to keep 190 my core temperature up
during sailing, and money to finance interstate trips and
accommodation. In short, I needed thousands of dollars. I have to
admit that this was one time that I wished my disability had been
caused by an accident rather than a disease. It might sound like sour
grapes, but accident victims actually get a much better deal with
financial support than someone like me with MS. My disability is so
similar to a paraplegic that people often assume that I am in a
wheelchair as the result of a motorcycle or car accident. They further
assume that I have financial help, a pension payment, someone to sue, a
moment in time to put the blame on. But of course that is miles from
the truth.
Since I got sick the financial burden for Paul and me has been huge.
Hand controls for my car, hospital stays, my wheelchair: none of this
comes cheaply and yet Paul has had to pay for all these things on his
own, with no help from anyone. And life in a wheelchair brings with it
a range of new expenses. I cannot use a bus if something happens to my
car, so I have no alternative but to take an expensive cab trip. On
holidays we can't go camping or stay in a caravan. I laugh about it
and make a joke that I only do four stars, but the reality is that we
have little choice -- we have to go the expensive way because less
costly accommodation just does not work for a wheelchair. Paul says I
always hated camping anyway and now I have the perfect excuse not to
go! That's probably true, but I do make Prue and her dad go camping
together every so often without me, just so she experiences that style
of living, especially by the sea, with sand in her sleeping bag, cold

showers and burnt marsh-mallows by the fire.

As far as the upcoming Paralympic trials were concerned, 191 this

would mean that there could be no budget accommodation and that all the
trips to regattas would cost us serious money. It seems unfair that
people who acquire a disability as a result of an accident have such an
advantage over those of us who genetically or environmentally inherit
our disability. Neither situation is easy, nor am I trying to diminish
what any person has to cope with in dealing with a disability, but it
just seems inequitable that for some the financial hardship is a burden
forever, while for others it is not as great an issue. But the fact
was that money was an issue for me and so, if I was going to have a
crack at the Paralympics, it was time I sought financial support.
Having my profile in the paper was a good start towards getting
businesses sympathetic enough to at least talk to me. I needed to be
out there in the public arena often enough to be recognised. Media
exposure also meant that a company or individual would hopefully see
the advertising potential of sponsoring a person like me. Sailing is
not a high profile sport and women in the sport have even less of a
profile, so I knew that I would have to seriously sweet-talk someone to
convince them to take a risk on an unknown, disabled, female novice
sailor.
Paul has a lot of marketing experience, so he used his word skills and
presentation ideas to create a fantastic profile kit for me to present
to potential sponsors. Then it was up to me to do the hard work -- to
ring, visit and sell myself to anybody who was willing to listen. I
printed off as many presentation kits as I could reasonably afford,
then set out with high hopes and lots of energy. My balloon was quite
quickly deflated. I was obviously not the first person who had asked
for money, faith or a helping hand, but there were an awesome amount of
direct knock backs and polite letters of refusal.
192 I had concentrated my energies on businesses that I thought would
be sympathetic to my needs. I looked at women's products and any
company I had seen associated with sailing. I got my name in the paper
with a contact number, asking for financial support. People responded
positively to my situation but there was no financial support to go
with their enthusiasm. I kept working at it. Any day I had off from
work I got dressed up and headed out to beat a path to prospective
sponsors' doors. I continued to be turned down, and time was running
out. A regatta had been scheduled in Sydney as an opening meet in
twelve weeks time to bring together sailors who were prospective
competitors for Sydney 2000.
With a sense of urgency I focussed my attentions on people I knew
personally rather than strangers. I rang the MS Society, experts in
drumming up money and support, and asked them for help in finding a
backer. They put me in contact with Shane Tyrell, a huge man who was
an ex-AFL football player, and now a keen sailor involved in a range of
businesses. We met at a cafe; he was easy to spot standing six foot
seven, and I had told him that I would be a snap to find - look for the
blonde in a wheelchair. We talked about my ambitions and financial
needs, and then Shane went away to consider his position.
I rang Catherine Johnson from Serono Australia, a drug company involved
in the development of medication for MS, who I had met at the media
launch months before. Serono had since extended their involvement to

supporting the annual MS Conference at which I had spoken, so I sent

Catherine my folio as well.

Finally I had found two contacts that were willing to at 193 least
consider my proposition and not close their doors straightaway. But
the days turned into weeks, and as the date for the regatta got closer,
there was now an incredible urgency for me to order a boat. It had to
be custom-built -- there were no secondhand ones available to buy -and at a cost of approximately $12 000, it was a big commitment to make
without a sponsor ... I took the plunge and ordered a boat! Madness.
I still had no acknowledgment that either of the companies I'd
approached would support me financially, but I had worked so hard and
come so far that I could not risk missing out on the regatta by not
having a boat ready.
With six weeks to go, Catherine Johnson rang and said she would like to
meet up with me at Monash Medical Centre to discuss my proposition.
She was there on business for the day and I could meet her for coffee.
I had not been back to Monash since I was diagnosed -- I had not been
able to go into that place which had changed my life so devastatingly,
not even to visit my sister there when she gave birth to my darling
niece, Kate. Understandably, I did not relish the idea of visiting
Monash, but my burning ambition to finance my addiction to sailing
outweighed any anxiety I had previously felt.
Over bad coffee in the hospital cafe, Catherine told me that Serono
wanted to help me financially in my bid for the 2000 Paralympics. I
remember the cup shaking in my hands as a whole range of emotions ran
through my head: relief, happiness and anxiety. Wow - a sponsor! I
had a sponsor!
Serono would support me over a three-year period, offering funds to
help with boat purchase, repairs, travel and so on. This meant I was
partly there, but still had a long way to go. I started to organise my
finances, trying to work out 194 how to pay for my boat when it was
built: credit cards, any savings we had, money borrowed from friends
and family perhaps.
Then out of the blue, Shane Tyrell rang me. I told him that my boat
was ordered and that I would have to pick it up and pay for it in a
week's time, on the Wednesday before the regatta. He said that was
fine - he would meet me at the boat builders and pay for my boat on the
day of pick-up. I was blown away, and in all honesty, I thought it was
too good to be true. One of the businesses Shane was involved in -- a
software company named Shift Track - would cover the cost of my boat,
while Serono would pay for repairs, training and travelling costs over
the next three years. Both companies would have sign age rights on the
boat and had hopes of positive publicity for their businesses.
Unbelievably, I missed meeting up with Shane on that glorious day
because he was on time while I was running late after finishing work,
picking up Prue from school, then packing the car and attaching the
trailer. By the time I arrived at the boat builders, Shane had been
and gone, having paid for my new boat in total! What a dream.
Until my boat was there, on the trailer at the back of my car, I had
not really believed that this could happen. I was a sailor with a
boat, and now the work really had to begin. My mum and dad came to see
us off from the boat builders that day and when I look back at the
photographs that they took I can see the sheer excitement lighting up

my face. In three months I had achieved a goal that at times seemed

unattainable, but here I was with my beautiful new 2.4-metre yacht, on
my way to the first of the Paralympic trials in two days time.

195 I christened her Polar Bear - boats are traditionally female, I

guess because sailors are traditionally men. The hull of my yacht is
all white and to me she is like a polar bear, beautiful, but wild and
never to be trusted, or maybe that's the way I aspire to sailing her.
I have always loved polar bears, and coincidentally both Prue and
Paul's initials are P.B. They are also both incredibly light-haired,
and Paul's nickname for many years has been Bear. It seemed very
appropriate that I should name my boat after the two who I love most in
the world.
196
CHAPTER 11
Flying High We drove to Sydney towing Polar Bear so I could compete in
a four-day regatta back at Pittwater in the north, in a boat I had
never sailed before. The conditions were extreme -- I had never
experienced anything like them. Going out to sea in a small craft is
risky at the best of times, but when there are big waves and strong
winds it can be plain dangerous, particularly when you are a paraplegic
with limited experience. It was absolute insanity, but that's what I
did the I day I first went out in Polar Bear, not to mention the fact
that | I was sailing against the best disabled sailors in Australia.
I did not really understand the workings of my new boat -[what each of
the coloured ropes did or controlled, how to use the steering or bilge
pump. There were twelve boats competing in this regatta and I was the
only woman. Paul had never | rigged a 2.4-metre boat before and I had
never sailed one as I sophisticated as this, so neither of us knew
whether it was all I properly roped up. I struggled out onto the

racing area and 197 worked my way through the first couple of legs of
the race, but in no time I was rapidly filling up with water. I
decided to head back to shore, disappointed and frustrated by my
inability to keep up with the blokes, let alone be competitive. Armed
with some boat trimming information from the crew of a helpful rescue
boat, I was able to crawl home.
Not knowing how to control repositioning at the jetty, I rammed my boat
into the dock, nearly smashing my brand new hull. Allan Jones, the New
South Wales Sailability coordinator, tied my yacht up, handed me a cup
of hot coffee and a piece of his wife Janice's fruit cake, then let me
have a little cry. I don't know what I had been expecting from Polar
Bear, but sailing her was a lot bloody harder than sailing the Access
dinghy that I was used to racing. I laughed and cried, cursed and
tried that weekend, but I finally had to admit to myself that it was
going to be a long, hard slog if I were to really become a sailor. As
the only woman in a fleet of men in contention for the Paralympics, I
had to be even better than them to qualify. There is no separate
division for women -the 2.4-metre yacht class is defined by disability,
not gender.
I felt so deflated after that regatta, because although the guys I was
competing against had lots of good advice and encouragement for me, I
basically knew that weekend that I had a long way to go before I could
consider myself a competitive sailor. The Paralympics now seemed much
more out of reach, though I reassured myself that by being at the
regatta and representing the female community, I had at least kept the
flag flying for the girls. But little could curb my enthusiasm: I had
a boat, determination, energy to sail and a thirst to learn -- nothing
would stop me making a bid for the Paralympics.
198 I came home to Melbourne and decided to take several months off
competition to concentrate on training. I asked Colin to teach me
everything he knew: I wanted him to coach me over the next couple of
years to be more aggressive, to help me get stronger and to extend my
knowledge and understanding of racing tactics. In his own laid-back
way, Colin agreed and committed himself to that role, without any
conditions or expectations.
Colin's background in sailing gives some insight into his amazing
generosity of spirit. He worked with the designer of the Access
2.3-metre dinghy to develop a stable craft that would be simple to
teach both disabled and able novices to use. The Victorian Yachting
Council employed him to coordinate Sailability, and he developed
programs for volunteers, community groups and athletes to get started
in sailing. Eventually Colin resigned from that position, but he
continues to help me.
Colin has so much patience it astounds me. He never yells or tells me
off; he is supportive and energetic and never negative. I'm certain
that being a coach to a person like me is no enviable task but rather a
selfless business. I can be selfish, moody, and of course physically
demanding because of my MS, and when it comes to sailing, I need help
with the most basic things. I need someone to put the boat in the
water, help rig the sails, and then help me into the hull once I have
lifted myself out of my wheelchair and onto the wharf. And then there
is the reverse procedure several hours later. Colin is always there to

help me without complaint. He sees it as his job to give me goals and

challenges to meet while I am out on the water. Colin is a good sailor
with all-round qualifications that enable him to teach, crew and

navigate any size 199 or class of yacht, and I am so lucky to have him
as my personal coach. He has continued to coach me for all these years
with no financial support -- what an absolute gem.
Colin has done speciali sed training to work with disabled athletes.
He is restrained in his approach to tricky situations, and he doesn't
say anything unless it is warranted. One day, ages ago, he shared with
me his theory on the performance capabilities of an athlete like me,
who has had to literally push her way to the top. Colin says there is
no threshold of pain, no wall for me to break through, as there is with
healthy athletes. Each day it is enough for me to strive towards
getting up and getting dressed, and in a sense achieving those simple
tasks has pushed me through the extremes' threshold already. In many
ways I see Colin as a mentor to me rather than someone who has to
forever push me towards elusive goals.
During the colder months of 1998, determined to improve my skills in
Polar Bear, I spent many hours training on Albert Park Lake and out on
Port Phillip Bay. I sailed with only a jib, or just a mainsail, worked
at turns and buoy roundings as well as running through a heap of
general training skills. I still had to juggle these hours on the
water to coincide with days off work, weekends or between school hours,
and considering we live over an hour's drive from the water, this was
always difficult to organise.
The full brunt of winter hit and it got to the point where sailing on
the bay was very difficult and cold in a solo craft, especially as I
continued to have problems keeping my core temperature up. It seemed
best to have a break until the 200 weather warmed up later in the year,
but then Shane Tyrell, one of my boat sponsors, suggested I try crewing
on a bigger boat over the winter months. He mentioned a women's
competition held each year on the Queen's Birthday long weekend in June
-- maybe I could be a part of it.
I rang the number Shane had given me and talked to the organiser about
the possibility of my getting into a crew. Within hours she rang me
back saying that the skipper of a yacht called Flying High was willing
to have me aboard on trial during a couple of training runs.
Rolling up on the appointed day to meet the all-girl crew of Flying
High, I was pleasantly surprised to find that they had no prejudices
nor preconceptions about how I would fit in. Gillian, the skipper and
helms woman controlled the movements of her crew and yacht in a soft,
restrained voice. There were two crew members each on the jib and
spinnaker, a dynamic foredeck duo and one woman on the mainsheet -- a
team of eight in total, with me as a new addition.
Gillian ran a tight ship -- she expected nothing less from her crew
than their best. We had a serious talk after my first day out because
I did not want to slow things down or make what was already a tough gig
any more difficult for the crew. They were great, deciding that I
would be part of their crew and do whatever I could: tail the rope for
the girls who were working the winches, keep an eye on the compasses
and the tactical manoeuvres of the other yachts, help retrieve the
spinnaker, be responsible for the start line countdown, and hike out
over the side of the boat to balance it. Over time, as I became more
familiar with the general running of the yacht, I was given more

responsibility and left in the back of the boat to work for Gillian,
while the other girls hiked out.

201 I was in absolute awe of the women around me -- they worked so

well as a team, yet each focussed intensely on their individual tasks
and responsibilities. They were the exact opposite of me as sailors
because they 'were masters of their respective crafts, with their
skipper overseeing the general running of the boat: on Polar Bear I am
jack-of-all-trades, master of none.
The June long weekend heralds the beginning of winter in Australia and
the conditions we sailed in over those three days of competition were
very intense, with high wind speeds and fairly heavy seas. I even
missed a day of racing because as a crew we decided that it was too
dangerous for me to be aboard. I have never actually experienced
full-on seasickness, but it was touch and go that weekend.
That first year I crewed on Flying High we won the Women's Keelboat
Regatta. We laughed and sang and partied to celebrate our victory,
taking countless photos of each other with our awards and revelling in
our prize. I loved being part of the team - the boat was big and fast
and sophisticated, and I had thoroughly enjoyed watching the girls
working together against the elements.
Then it was back to reality once more: going to work, washing the
family's clothes, keeping the refrigerator full of food, cooking meals
and spending time with my precious family. Paul and Prue had supported
me so well during all my sailing events that I felt lucky to have two
people who cared enough about me to let me follow my dreams and go. In
fact it had worked out really well, because while I was competing in
the Women's Regatta, Paul and Prue had gone camping with friends,
experiencing the bush life that I could not.
202 During 1998, a new addition to my busy lifestyle evolved when Ruth
Pendavingh (nee Hutchinson), both my teacher and friend from school,
rang me to ask if I would speak to a group of her year eight students
at my old school about the effects of MS on my life. The girls were
doing a religious education unit and looking for insight into the lives
of people with disabilities. I was flattered to be asked and agreed
enthusiastically. So a couple of weeks later I headed off to Catholic
Ladies College in Eltham for the morning.
I had prepared a speech, but I was still nervous about talking to kids
again. It had been a while since I'd taught in a high school classroom
and I knew I would have to be open with them and answer their questions
honestly. I had mentally coached myself before arriving that there was
nothing to be embarrassed about and that anything I had experienced was
better shared than kept inside. So I tried to tell the girls about my
life, putting in perspective both the sad and the happy. I talked
about Paul and Prue, sailing, working and living life to the full,
despite my disability.
As predicted, the girls asked me questions from one extreme to another:
"How do you go to the toilet?" was followed by "How can you still
believe in God after what has happened to you?" I had a challenging
yet satisfying session with them because their response was excellent.
They obviously had many more questions, but all too soon I had to
reluctantly excuse myself and leave because I had promised to meet
Colin for a training session on Albert Park Lake. But ant turned out,
this was to be the first of many such presentations to groups.

Not long after this I was asked to speak at a whole school assembly at

CLC, an hour's presentation followed by question 203 time. I'm not

sure how I managed this new challenge, but I suppose I got out my
actor's hat and wore that again, except that this time I wasn't playing
a part - the story belonged to me. I was as truthful as I could be,
taking them on a roller-coaster ride to make them laugh one minute,
then cry the next. It seemed the actor in me could still work a crowd
and, although it was an intensely personal and honest look at my life
with MS, it had a positive effect on both me and the girls who were my
audience that day. I realised then that public speaking was something
I enjoyed.
My friend Simone heard about my new pastime and booked me in for a
weekend conference attended by the staff at Australian Consolidated
Press. The feedback was very positive, with some people actually
deciding to give up smoking or change their attitudes towards their
colleagues, work or lives. My hope was that I could just make them
stop and appreciate what they had rather than wish for more: health and
happiness, you can't get better than that I reckon.
I have been accepting public speaking engagements on a professional
basis ever since. People ring me out of the blue and ask me to talk to
groups, large or small, about how I found the courage to remake my
life. I don't proclaim to know it all, I just explain how I changed,
and there was nothing really magical in that - I took little steps, and
many little steps over time grew into something very positive. I
suppose that when people see me they can only imagine how awful things
must be, but if my attitude is good, why can't theirs be too? When I
give talks, the main message I want to drive home is that I am a
reminder that life is too precious to waste, and everyone should
appreciate each moment and day of their lives.
Eventually MS Victoria got word of the fact that I was a 204 reasonable
public speaker and asked me to speak at corporate presentations and
other special occasions. It was a very positive moment for me to
finally work with the MS Society. I had been hard on them, and by
excluding them from my life for too long I had failed to witness their
metamorphosis: while I had been coming to terms with my own MS, the MS
Society in Victoria had been undergoing a major transformation under a
new administration team. Now, rather than focussing on the misery of
the disability and the physical decline of people with MS, their new
thrust was 'living with MS'.
The MS Society had a new marketing man, Peter Bland, a man of great
vision and abundant energy. I admired his qualities and his ability to
see the dream, something that was so important to me. Peter is the
sort of person I like being around, and when he asked me to talk about
MS in a new, different and positive way, we became a bit of a team.
You may have heard of him: this is the same Peter Bland who in late
2000 was lucky to survive a life-threatening trekking accident in
Antarctica, only kilometres from reaching his final destination.
Eventually I worked directly on particular projects for MS Victoria and
became an official ambassador for the MS Society, making appearances on
television current affairs shows during MS Week each year. I have
worked with both small specialist groups and large corporations in
helping to motivate other people to change the way they think about
themselves and approach their lives. All I really have to do is tell

them how life is for me. My sailing career is hard enough for most
people to comprehend, let alone the fact that I also juggle it with a
family and "work. I have had the privilege of speaking with a number

of interesting television personalities about MS and sharing 205 my

passion for sailing with them too. Hopefully my continuing on the
speakers' circuit will open windows of insight and understanding in
people's minds. The major focus of my talks is no longer who I am and
what I think, but about changing the way other people think about MS.
During 1998 I also worked part-time at Swinburne TAPE and opted to work
some evenings with the RAID program, an activities-based group who
worked predominantly with intellectually disabled adults. One night a
week, two other teachers and I set ourselves the task of opening up
these students' minds to the world of drama. It was challenging, with
our catch cries during class being in the order of: 'please don't lick
the floor' someone wake up that student', or 'there is to be no tongue
kissing during activities'. The harder the students were to control,
the more creative we became, finally developing a range of lessons
where each student achieved something or created a moment that made
them exceptional.
In all its multi-faceted aspects this job was both exhausting and
rewarding. After two years though I had to quit, because the hours of
preparation needed to make it work well exceeded the amount of time I
could afford to spend, both physically and financially. I concentrated
on my day job at TAPE, my public speaking, my training and just staying
healthy.
Then I set myself a new challenge. I figured that if I could do what I
had done over the past few years -- raising Prue at home for two years
while I was depressed, then holding down two consecutive jobs in
tertiary employment for a total of four years -- then maybe I could
progress even further and once again do what I had trained to do. I
decided I should head back to high school and teach drama.
I rang a couple of the schools I had taught at before and they both
reacted positively, asking me to come in for a chat. Greenwood talked
to me about full-time work -- I wasn't prepared to go back for that
many hours, but I was thrilled that my disability posed no problems for
them. Mullauna Secondary College liked the idea of my coming to them
on a part-time basis, so I jumped at the offer because the benefits of
part-time work compared with sessional hours were terrific. Plus, I
could be reinstated with many of the benefits I had walked away from
years before -- important things like holiday pay, sick leave,
superannuation benefits and long-service leave. I'm not sure the
principal was completely convinced that I could do this job, but as I
described my working life at TAPE he found nothing he could argue
about. I was back on the staff of Mullauna Secondary College.
Facing adults with disabilities was one thing, but going back to
teaching in a regular high school was another. In fact, when I really
gave it some thought, the prospect was downright scary. And there was
something else, something that seemed a bit weird: Mullauna was where I
had been teaching when I was originally told I had MS, and I now
remembered that it was the same school where, prior to my going there,
a series of teachers had developed MS symptoms. A strange coincidence,
and somewhat eerie.
I was a little frightened about how the students would respond to me
back in the classroom. In the past I had always had a good

relationship with my students, but now I was older -- and disabled. I

know very well that teenagers don't hold back -- they can be blunt and
malicious when they want to.

206 207 I didn't try to fool myself: I knew it would be hard going, at
least until I won their confidence. The staff had reacted quite well
to my reappointment to their ranks, but I was aware that many of them
also had some misgivings about a person with MS holding a position at
their school. I suppose their greatest question was how I could
possibly cope with life in a secondary college, given the demands. So,
being Anna, I took the bull by the horns and answered any questions
from students or staff with straight, honest replies.
On the first morning I headed into the classroom and faced 25 year nine
students, who could not believe what had just wheeled in through the
door. I wore what I figured were my coolest clothes, and put on a big
and hopefully confidence winning smile. After the "Hi, I'm Anna'
routine, I described my life in some detail: my disability,
qualifications and experience. I ended this opening chat with an
invitation for the students to ask questions. I also explained that
this was the first and last time that they would have the right to ask
me details about my personal life and my disability.
It worked. From that moment on, teaching has been the same as before
for me. I have managed to overcome the physical limitations of being
in a wheelchair through my classroom design and management The students
accept me as I am and don't seem to even notice my chair anymore They
argue with me, we laugh together, sometimes they're naughty - in short,
their behaviour seems to be typical of the students I taught before I
became disabled.
In 1999 I directed the school's production of The Wizard of Oz. The
performance was a huge commitment for everyone involved, with
rehearsals after school, on weekends and during holidays, involving a
cast from across the school, years 208 seven to eleven. We worked hard
together as a team to make their performance a great success, and I was
pleased that somehow, amid my busy lifestyle, I managed to coordinate
the staff and students in a high quality musical production.
Doing that show was like being back in the saddle again, teaching
students not only about the play and their lines but also about acting
a character. Under my direction, students with the support of staff
members built a set and made the costumes. I taught kids to rig lights
and control a lighting panel. The music staff coached a brilliant band
of music students and a performing arts staff member choreographed the
dances. Sometimes, believe it or not, I even helped teach the dances.
Perhaps it seems strange to think I could teach kids how to dance while
sitting in my wheelchair, but on occasion my descriptions of various
movements and steps were enough to fill in the gaps.
Thank goodness my energy levels were much-improved because this sort of
activity would stretch the resources of an able-bodied person to the
ultimate degree. Other staff looked at me in awe and asked how I
managed such extracurricular activities, and I answered honestly that
the drive comes from within, and from the knowledge that a moment
wasted is a moment lost. Because of my MS, I have wasted a lifetime of
moments already. I won't do that anymore.
Once the precedent had been set, it was hard to back down from
directing the school play each year. The day The Wizard of Oz closed
its final curtain, the students came and asked me what play we were

going to do next. So the following year I ended up directing a very

successful season of Dracula Baby, and once again the students thrived
on the task I set for them, exceeding everyone's expectations,
including mine.

209 Sometimes I look at the challenges I set myself and wonder why I
do it, but then I think, why not? Drama and music gave me so much as a
child and teenager, and then as an adult acting gave me the confidence
to jump some enormous hurdles that I otherwise would not have been able
to tackle. In many ways, and perhaps ironically, my life with drama
gives me the ability to stop hiding from the world and to face it head
on. When I do these sorts of challenging things, like directing the
school play, I prove to myself that I am still the same person I've
always been -- it's just that I am now conquering these challenges from
my chair. Well, directors normally have chairs, don't they?
The seasons changed and cold months melted into warm spring days. It
was time to sail in competition again, so my new schedule became three
days a week at school, two days training in Polar Bear and two days at
home to get things organised and keep my family comfortable. This left
little time to waste, and there were also trips to Sydney and Canberra
for sailing regattas as a lead up to selection for the 2000
Paralympics. My life seemed to be in a whirl of packing up the boat,
packing up the family and getting out on the water. Heading north for
one such regatta at Rushcutters Bay in Sydney, home of the annual
Sydney to Hobart yacht race, I was full of anticipation. Next spring
this was to be the Olympic venue, in the middle of the harbour city's
posh eastern suburbs and in the thick of the Sydney lifestyle. Our
accommodation was close by but expensive, though as a venue for sailing
it was fantastic. The Cruising Yacht Club in Rushcutters Bay had lots
of floating pontoons, with ramps 210
that move up and down according to the tides. I loved it. There was
already a security blitz on while we were there in preparation for the
Olympics and all the competitors' cars, boats and credentials were
checked rigorously, adding to the buzz of excitement.
We dropped our boats into the picturesque harbour, with a backdrop of
beautiful, up-market apartments and landscaped gardens hugging the
surrounding cliffs, and the Harbour Bridge and that amazing Australian
icon, the Sydney Opera House, just around the corner. It was magic.
Up went the sails and out we went onto what appeared to be welcoming
water, with a mellow breeze to guide us across the course. But what we
actually experienced was hell.
I found it extremely difficult to sail in this new waterscape, and it
was a very different arena compared to Melbourne, Canberra and even the
enclosed harbour at Pittwater that I had experienced on my last visit
to Sydney. I can only liken the experience of sailing my little yacht
through the seas off Rushcutters Bay to trying to personally guide a
wet sock through the rinse cycle in a washing machine. The breeze shot
around the harbour, seeming to bounce off the cliffs, down onto the
shoreline and then around the islands, causing havoc for inexperienced
sailors like me in the process. The waves and tides performed a
similar sort of swirl, not to mention the unbelievable amount of
traffic that Sydney Harbour carried.
There were water taxis, ferries taking passengers to and fro, and large
cargo and container ships slowly making their way down the harbour,
either heading out to sea or preparing to dock and unload their cargo.
There were yachts and pleasure craft of all sizes and shapes - boats

and boats and more boats 211 everywhere. The rule of the water is
that larger boats should always give way to smaller yachts, as we have
less speed and manoeuvrability, but there was no way I was going to
argue with these huge craft. I just got out of their way.
We sailed a four-day regatta out of Rushcutters Bay; from dawn till
dusk we were on the harbour competing. It was tough and technically
confronting. The competition was fierce and expectations were high
with the Paralympics looming, and I had difficulty keeping up with the
boys -- their strength added to their tactical experience seemed to be
increasing the gap between us. We had all spent months becoming
familiar with our boats, but they were just far more experienced than
me.
I soldiered on, continually reminding myself that I was holding the
flag for women sailors. Whether or not I would be finally successful
in the overall competition had almost become irrelevant: if I did not
persist, the 2.4-metre class would be an all-male one, with not one
woman in contention for the Paralympics. I took this challenge very
seriously and was convinced that the longer I sailed against these
guys, the more I would learn about sailing. If this regatta didn't go
my way then there would be another - my time to win would arrive one
day.
I sailed in many regattas in the lead up to 2000; some I did okay in,
others I came last. But I hung in there, always trying to better my
results and improve my performance. I never stopped working.
All things considered, 1999 was one of my busiest years to date. I
made appearances on TV for MS Week, gave public talks, taught my
classes, directed the school play, attended a number of very
competitive sailing regattas, and still found time to be wife and
mother. It was also the year that I was 212 lucky enough to be awarded
a special prize, and even better was the fact that I did not have to
get wet to be eligible for it.
One of my mother's friends, a member of the Rotary Club of Victoria,
nominated me for Rotary's Shine On Awards, which recognise disabled
people who by their own example show other disabled people and the
community at large how to achieve their best. I very humbly became a
recipient of this prestigious award and Sir Gustav Nossal, later to be
Australian of the Year in 2000, presented me with my beautiful plaque
and glass trophy. This was a fantastic moment for my family and for
me, but my pleasure was further extended the following year when I was
asked to be the chairperson of the selection committee for the awards.
It was only when I read the list of nominations for 2000 - including an
incredible number of truly deserving people - that the true impact and
significance of my award from the year before really struck home.
Then, almost before it seemed possible, the final stage in the lead-up
towards the 2000 Paralympics in Sydney was upon us. The final series
of races included state championships, then the last Sydney meet, and
finished up with the World Championships in Melbourne. By then I knew
that the competition was too strong and I had little chance of making
the team, but I maintained a positive attitude and resolved to fight
all the way to the last finishing flag.

Apart from anything else, I had the satisfaction of knowing that I had
come such a long way in such a short period of time. I had kept trying
and prevented it from being an all-male contest, and I had gained an
enormous amount of experience on the journey towards the Paralympics.
In just over two years I had gone from being an absolute novice to

competing at an 213 elite level. I had been welcomed into the ranks
of the Victorian Institute of Sport sailing squad, the first disabled
woman in its history. There were many things to be proud of, and
absolutely nothing to regret, in my all-out effort for the Sydney
Paralympic Games.
The last regatta I sailed in Sydney leading up to the 2000 Games was a
wild occasion. The conditions were the worst we had ever experienced
as a squad, and the wear and tear on us and our boats was extreme. It
was a gruelling series with a lot of pressure on all the competitors to
stay out on the water, no matter how intolerable the conditions became.
Being disabled was not the issue here -- we had nothing to prove to
each other in that regard -- what we each wanted was a place in the
Paralympic team.
The stress on our equipment was high, and we seemed to be continually
breaking rigging as we doggedly raced for up to six hours at a time. I
remember one race particularly well. The conditions were appalling, it
was blowing a howling gale, but the organising committee still insisted
that it was okay for us to race. As a fleet we apprehensively got into
our boats and tacked out to the start. Many other classes of yachts
were racing that day as well so it was very busy out on the harbour,
with the various races going in and out, crossing over and through each
other's courses.
At the start line we were being knocked around so much that our little
fleet took refuge behind an island until we were due to begin Then the
class flag was raised, the gun sounded, and we were off. Some of us
tacked to port, others went starboard: we were looking for the fastest
and safest way to get to the first marker, but it was wild out there.
The seas were rolling in and my boat was filling with water so fast
that I had 214 to use both my electric bilge pump and my hand pump, but
still I could not keep the water out. Polar Bear was rolling back and
forth as I struggled to control her direction. I didn't panic, but I
knew I had hit survival mode: this wasn't sailing, this was just
staying afloat.
And it was far from being fun. I could see other boats around losing
speed and a picture of me sinking flashed through my mind. As skipper
of this small boat I had to make the ultimate decision alone - should I
abandon the race? This was my call, just as it was for all the
skippers of the other yachts, but it seemed I had no alternative other
than to protect my boat and my own life. So back I went to shore,
feeling defeated and pathetic, as though by deciding not to continue
sailing in that race I had let the girls down. But my emotions were in
turmoil because although I was disappointed, I was also relieved to be
safely back in port.
As I sat on the pontoon of the Cruising Yacht Club at Rushcutters Bay,
watching Paul down-rig my boat while the rest of the fleet hobbled in,
I started to realise that I had made the best decision. Several boats
had partially sunk, while others had broken poles and snapped rigging.
There were many DNFs - yachtie speak for 'did not finish'. Then I
noticed one of my fellow sailors, Mick, being brought in, very
distressed. Apparently he had gone down with his yacht and had only
survived because a quick-thinking rescue volunteer had seen his
predicament and dragged him up, literally cutting him out of his boat.

It had been a matter of life and death.

Mick was ashen-faced and quite obviously in shock from this terrifying
encounter. I wheeled over and gave him a hug, realising the severity
of the situation and how right I had been to come in when I did. Mick

is an extremely experienced 215 sailor and has competed in several

Sydney to Hobart races over the years. Offshore sailing is normally a
walk in the park for him, and yet a 2.4-metre race in a harbour regatta
had nearly claimed his life.
It was a sobering moment. I had never really grasped until then just
how vulnerable sailing with a disability made us. Without the support
of rescue volunteers it would be very easy for a simple problem to
escalate and become highly dangerous. Many disabled sailors,
especially paraplegics like Mick and me, would find it almost
impossible to haul ourselves out of a crippled boat, especially in
extreme conditions like those we experienced that day. Rescue
volunteers play a vital support role in our being able to sail
safely.
Mick's boat was refloated the next day thanks again to those
volunteers, but after what he had experienced I don't know whether Mick
has ever sailed in a 2.4-metre again. This is so sad, and we miss his
participation in our sport because he always had the best jokes to tell
and a wonderful smile -- he even liked my singing! Mick was a good
mate to all of us in the 2.4-metre regattas. While everyone else was
totally focussed on the end result of a regatta, Mick always enjoyed
each race as it came, whether he got a good or bad placing, because he
reckoned that what counted most was just being out on the water.
Eight weeks later it was time for the World Championship Regatta in
Melbourne, the final step towards Sydney 2000 and involving both able
and disabled sailors. The fleet of disabled sailors who had competed
against each other for the last couple of years had one final regatta
to prove their Paralympic potential before the team selection was made.
How I had made it to this point still astounds me, but there I was,
ready and willing.
216 Just as the Worlds were looming, Paul resigned from his job,
looking for a career change. This was perfect timing and a bonus for
me, because it meant that he could be with me at the regatta every day.
He helped me in all sorts of ways, from rigging my boat to making sure
I ate properly, and he kept me calm before each race. Prue was at
school during the day, then picked up by friends, family or neighbours
on a sort of roster, so that also worked well. Colin was an official
for the event, so he was incredibly busy with the boats and their
owners from all around the world, and I was grateful that Paul could be
with me. My school was fantastic too, giving me some time off work
plus lots of moral support.
And I needed all the support I could get: there were competitors from
sixteen countries around the world who had come to Australia to compete
on Port Phillip Bay, which meant there were about eighty boats on the
start line for each race. It was difficult jostling for position and
trying not to foul another competitor, then competing for six hours
each day out in the elements. The first two days were the pre-world
trials, a short series of races enabling the international competitors
to get a feel for the local conditions Then there were a couple of days
for the official measurement of each boat, to make sure that both the
boat and its sails were within the class standards and eligible to
sail.

At first I sailed from the heart, but then I tried to sail with my
head, using tactics the boys had taught me in Sydney, because the
competition was steep, and I could not keep up. Each day the
conditions got worse until one day I seemed to be sailing in wild
weather all on my own. The swell was big and as I sailed up a wave, I
lost steering on the way down the other side because the rudder of my

small boat lifted right out 217 of the water. A very difficult
situation even for an experienced sailor, I had to use my limited
experience to get me through. I concentrated hard and focussed on what
Colin had taught me about using my sails to steer me in the right
direction.
I knew Colin was on the committee boat and I wanted to finish the race
so he would be proud of me. When I was on top of a wave, I could just
make out the buoys in the distance and the occasional mast top of other
competitors, all of whom seemed well ahead of me. But I soldiered on.
At one stage I broke some rigging and had to do a quick repair job, but
I was determined to finish. I kept thinking that if my mum could see
me now she would be horrified, but thankfully she could not because
this was totally crazy. Oddly, I was not frightened: after so many
days out on the sea, I seemed to have reached a new level of exhaustion
and felt almost punch-drunk -- it was me against the world! No one
could have stopped me from finishing that race.
As I finally sailed past the committee boat at the finish line, I saw
Colin's smile and knew it had all been worth it. On returning to shore
I discovered that more than half the fleet had dropped out of that
race, and I was one of the few people who had actually finished. My
results were not dazzling, but I wasn't ashamed of myself either. If
nothing else I had proven I could do it -- I could compete at an
international level where disability and gender were not taken into
account and hold my head high. The overall disabled winner, Peter
Thompson, was to be the Australian representative in the Sydney 2000
Paralympics and I was so proud to have raced against him. It was such
a high just watching him receive his World Championship cup.
I went home knowing Pete would give his all in September 218 2000 and
make Australia proud. I had a smile on my face for my personal
achievement too, and an inner pride because I had competed in the
Worlds. I didn't feel disappointed, just happy to say that I had given
it my best shot against all odds, and that I looked at the last few
years as preparation for the future - in fact, I was already thinking
about the Paralympics in 2004. Athens sounds fine to me!

219 CHAPTER 12 Enjoying the Journey After the Worlds, I took a few
weeks off sailing. I went shopping, did lunch with girlfriends, bought
shoes -always a real indulgence as I can never wear them out - and did
all the things that normal people do from week to week. Lots of people
who had followed my bid for 2000 asked if I would be competing in
Sydney in the 2.4 metres. Interestingly, it was a shock to several
people that I had not qualified considering the work I had done. Their
reaction suggested that making the Paralympic team was something you
signed up for because you wanted to sail, or just turned up on the day
of competition and had a go. After all my training and trial regattas
I knew how far that was from the truth, and that the pressure in the
lead-up to the Games was intense The reality is, of course, that the
process for selection in the Australian team was just as gruelling for
disabled athletes as it was for able-bodied athletes.
One insensitive person even commented that it didn't 220 matter that I
had not made the team because the Paralympics don't really count
compared to the Olympics. That sort of comment really hurts because it
suggests that my disability makes me less important, and that a
disabled athlete representing her country warrants less support than an
able-bodied competitor! I was angry about their mystifying attempt to
make me 'feel better', but I knew it came from ignorance rather than
malicious ness They obviously didn't understand what any athlete has to
go through to prepare for that level of competition.
I am sure that every medal-winning Australian Paralympian was as proud
to be on the presentation dais as any Olympian. I am equally sure that
their family and friends were just as proud, or perhaps even more so
because of the physical hurdles that had been overcome to get to that
position. And I know for a fact that I cried with joy at the athletes'
achievements during the coverage of both events.
But, as our 2.4-metre representative and the guys from the three-man
Sonar crew headed to Sydney, geared up for the 2000 Games, I got on
with my daily routine and sustaining the momentum of my busy life. I
had to keep training, stay strong and work towards improving my sailing
with a view to being included in the Australian 2004 Paralympic team!
So I put on my wet weather gear and my thermals, packed my bag and
headed down to the bay again to take part in big boat sailing for the
winter. For the 2000 Women's Keelboat Regatta, I was again part of the
Flying High team, but this time I sailed with the crew every day over
the three-day regatta. The conditions were fair but cold, very cold.
The yacht was so big and beautiful and built for speed, not cruising:

the huge expanse of white sails, a sleek body to slice 221 through the
seas, and sophisticated rigging to work the boat to its full potential.
I had learned a lot about sailing since first crewing on Flying High
and now I was able to really enjoy the wild journey we took during that
regatta.
Because Flying High had such a history of race wins, we were heavily
handicapped against the rest of the fleet and had to win each race by a
margin of at least eight minutes, so we really had our work cut out for
us. On the last day of racing, our skipper Gillian was totally
focussed on winning. She made us strip the boat, taking off every
unnecessary item in the hope that it would lighten up the yacht
sufficiently to beat the fleet in what were very light wind
conditions.
On days when the breeze was blowing hard I would take my wheelchair on
board: I didn't really use it, but I felt more comfortable having it
with me than leaving it parked on the jetty. But on this particularly
still day I bike-locked my chair to one of the pylons on the pier, and
we left all our extra gear in bags and lockers back at the clubhouse.
As we headed out it was calm and foggy on the water, with barely any
breeze. Our first marker was not yet in sight: we were given a compass
reading to direct us towards it and it was my responsibility to make
sure we stayed on course and rounded the correct buoy.
The race was slow and tactical. The aim in these sorts of conditions
is to keep the boat quiet, with no radical movements to disturb any
momentum that you may get from the small puffs of breeze moving across
the water. We moved slowly around the boat in an effort to improve the
weight distribution, and so that the sails could potentially fill with
any small gusts that were around.
It took an agonising two hours to get around the course and when we
finally did finish the race, we were all chilled to the bone. Some of
the crew danced around on deck to get their circulation going, others
just rubbed their hands and stamped their feet. I moved around as best
I could but I was cold, really cold. We were all a bit subdued as we
ate our lunch and waited out on the water for the next race to
commence. Our thermos flasks were back on shore so, with no warm
drinks to thaw us out, we sat around stagnantly. While the organising
committee waited it out hoping conditions would improve, that the fog
would lift and the breeze return, I sat and shivered.
I don't think I have ever felt so cold. Gillian suddenly realised that
I had gone very quiet and asked if I was alright. Even though I was
wearing two pairs of thermal long Johns and skivvies, socks and boots,
a polo fleece and my wet weather gear, I was aware that my core
temperature had been dropping. We decided to have a look at my feet:
on removing my layers, it turned out they were very blue, so the girls
took it in turns to rub them They also wrapped me up in a waterproof
sea blanket, but as they rolled my overalls up my legs to check me
further, it become very obvious that I was extremely cold. I had
little circulation: my legs were blue and this condition was creeping
up my body as the waiting period dragged on. My core temperature was
dropping drastically and, because I am paraplegic, my body was not able
to cope.

Getting warm became my priority. We had already completed five out of

the six races in the series. Whether there was a sixth race in the
regatta or not, I would not be crewing in it. With a sense of urgency,
Gillian called a rescue boat over and I was taken off Flying High and
back to shore. In all honesty I do not remember this: it's just a
vague blur. Apparently I rang my sister Jane, who lives fairly close

to the 222 yacht club, and warned her that I was on my way and needed
help.
Once I arrived" Jane took over and did all she could to help me
gradually regain circulation in the lower half of my body: a warm
shower, heat pads, warm soup, but nothing too hot. It took a long time
to get any colour back in my feet and legs, but after a few hours of
sitting in Jane's heated house with some warm food and a dry
atmosphere, my circulation returned to normal. This had been a close
call with hypothermia, a dangerous health warning which I did not take
lightly.
But nothing was going to dampen my spirits that evening -- celebrating
the regatta is a big part of the fun. I dressed up in my team clothes
and headed back to the yacht club for the post-regatta dinner to find
that Flying High had won line honours in four out of five races, and
that we had come sixth overall. We danced and drank and took photos,
celebrating as a crew: it was great being part of that team spirit once
again. I reflected that night that the feeling was something I had
never really experienced when I was younger, but now I revel in it.
Sailing in Flying High was such a contrast to the competition I had
experienced in the 2.4-metre class, where we were so focussed on the
Paralympic goal that in many ways we had forgotten to have fun. The
big boat team taught me to really enjoy sailing, to stop completely
focussing on the end result and simply enjoy the journey.
I sometimes wonder if it is overly ambitious for a disabled person like
me to participate in such a challenging event as the Women's Regatta.
This last race had demonstrated how it can push my health and stamina
to the limits while my presence can create extra stress for the other
team members, but I loved being on that boat. I was the first and 224
perhaps the only disabled sailor crazy enough to give all-women team
racing a go, but the satisfaction and pleasure I gained just by being
involved was fantastic, far outweighing any risks. I no longer fear
what might happen -- the joy of the moment is when I completely
concentrate my energy on the task. It is easy to lose sight of that,
and I need to constantly remind myself to enjoy the moment and not get
caught up in the lure of the end result. I did not need to be a part
of the Paralympic team to prove to myself or anybody else who I am or
what I can do. I prove that every day by the way I live and what I do
in a variety of ways -- in fact, by just being here.
In September 2000, when the Olympic and Paralympic hype was at full
pitch, I was invited to talk to a small group of people with MS, and I
gathered from their group coordinator that she hoped my positive
outlook on living with MS might inspire some of the members to
revitalise their lives. I was told that few of the group seemed to
have a good attitude to their life and disability, and that some of the
others had started to shut themselves down and stop participating in
life in various ways: some had given up work, others had opted to stay
at home most of the time, a few had given up driving - all the things
that I had done. It's hard to face the world as a disabled person, so
in some ways it is easier not to.
It was a somewhat confronting experience, because in many of them I
could see myself during my most sad times years before -- their eyes
reflected their negativity -- but it was heartening to glimpse a

positive light in the eyes of others.

Of the seventeen people at the

gathering, most were shocked 225 by the aggressive onset of my disease

and the diagnosis process I had endured. But we shared experiences and
it turned into a rewarding afternoon. They wanted to hear all about
Prue, sailing, my relationship with Paul, and my ability to work with
MS.
I never compare my disease with that of other people because MS
manifests itself so differently in each person. For some it is extreme
and debilitating; others seem to be minimally affected. The way that
each of us handles it is so personal, and yet how we cope affects our
future well-being too. I firmly believe that my health improved when
my attitude improved. No one can reverse the physical impact of MS or
the injury in my brain, and medical science has yet to discover a way
to reverse the damage to the spinal cord. But feeling good about who
you are, despite what has happened because of MS, can make a huge
difference to a person's well-being. Like me, the people with the
sparkle in their eyes had worked that out for themselves, but unhappily
the others still had a long way to go.
Many of the group were surprised by the drugs I had been offered early
on and by the way in which the MS has affected me, specifically because
it has made me a paraplegic. Most had only recently been diagnosed and
their experiences to date had been quite different from mine. My
experience of the disease had forced me to create new ways to cope with
day-to-day life, and most of these newly diagnosed people had not
considered these issues. I hope for their sakes that they never have
to, and fortunately not all people with MS end up in a wheelchair. The
only rule about MS is that there are no concrete rules. Paraplegia
just happens to be the way MS affected me.
226 It's interesting that some health professionals like doctors and
psychologists expound the theory that you have not truly accepted your
disability until you dream of yourself in that context. If that is
true then I have not been able to accept my life in a wheelchair,
because when I dream I am always strong and able. In my sleep time I
enjoy all the fabulous things a wheelchair-bound person cannot do: I
run, walk, dance, skip, ride bikes, and on some occasions I even fly.
I am sure that dream analysts would say the latter has other
connotations, but I wake up elated by the good time I have had. When I
was an able person I of course took all of these things for granted: it
is often not until such simple pleasures are taken away that you
realise their value in your life. So I dream of dancing in Paul's
arms, riding a bike to the shops, flying through the trees, walking
through the garden, and I always wake up with a grin. I suppose I am
lucky that I can at least remember what it was like to experience these
things, because some people never have the opportunity to climb a
ladder, or sit in a tree. My morning smiles come from a combination of
my memories and my dreams.
I will never stop hoping for a cure though. One day I wish to dance at
Prue's wedding, or simply walk along a beach with Paul again. But that
day may never come, and I can't put my life on hold waiting for it, so
I'll hope and wish but live on regardless.
Sometimes I get jealous watching other people do those things I can
only dream about, and I think to myself they probably do not appreciate
what they have. But being a voyeur can give me huge pleasure too,

especially when I watch Prue. I feel the buzz she gets from riding her
bike, because I remember what fun it was pushing those pedals down and

up 227 with the wind in my hair. When Prue smiles and breathes the
fresh cold air through her teeth on her bike, I suck in a remembered
magical breath. As a girl I could ride anywhere, and when Prue looks
over her shoulder at me, I feel like she is sharing my thoughts of
freedom and adventure. But maybe this is how all parents react
watching their children at play.
It is a blessing that Prue has been able to amuse herself ever since
she was a tiny tot. When she was a baby we didn't go out much because
of my depression, and there were often days on end when we saw few
other people. She learned early how to entertain herself and has
continued to be happily self-reliant, quietly enjoying her own company,
drawing or writing stories. Even now if we go out for dinner as a
family and Paul and I discuss things of little interest to her, Prue
will be content to sit at the table and draw. Often she produces
pictures of our family, and interestingly she rarely draws me in a
chair, but rather standing tall and strong. She occasionally draws the
wheelchair, but usually only when someone else reminds her.
But most of the time my wheelchair is not an issue. We even bought
Prue a Wheelchair Barbie: the chair is pink and purple and the doll has
a very glamorous outfit. When her friends come over there is often a
big game played out on the floor where all the dolls get ready to go
out. Sometimes the chair is in the game and the kids argue over whose
doll is going to use it, other times it is excluded completely.
Wheelchairs are just not very significant in our house -- they just let
you get on with life.
Meralyn, our helper, still visits once a week, and over the past seven
years she has become one of the family. Having home help is one of the
small concessions I allow myself to 228 compensate for living in a
wheelchair. Most of the time I just battle on doing my fair share of
the housework, all of the shopping and cooking, working part-time and
looking after Prue. But hanging out a set of wet queen-size sheets is
a big ask for someone in a wheelchair -- I have to lift the weight
above my head while trying not to drop them on the paving. To put
clean sheets on our bed is also a challenge: by the time I have pulled
the first corner over the mattress and wheeled around to the opposite
side, that original part of the fitted sheet has usually slipped off.
It is, to say the least, a very time-consuming and frustrating task,
and only someone who lives in a chair can truly understand how simple
tasks become so difficult. As if by magic, Meralyn takes away these
frustrations, achieving in an hour what would take me three or four
hours to do badly.
But life in a wheelchair sometimes has a very funny side because it can
make other people behave so strangely. Once I was in the supermarket,
doing the shopping on my own, minding my own business. I usually
cruise around with a basket on my knee, collecting the items I need and
leaving each filled basket at the checkout, until I have everything I
want. My supermarket actually has a special trolley designed to clamp
on to the front of my chair, but I used it once and found it so awkward
and difficult to manoeuvre that I gave up on the idea. Since then I
have always opted to zip up and down the aisles with a basket
collecting things and finally emptying them into a trolley at the
checkout. Then I load all the items onto the counter and have them
delivered to my home.

Anyway, on this particular day I wanted to buy some frozen peas They
were well past arm's length in the chest freezer and I just could not

reach them There was no one around to help 229 me so I decided to flip
up my foot plates lean forward and stand up to grab a packet as quickly
as I could. Out of the corner of my eye I became aware that a fellow
shopper was looking in my direction, amazed by what she was witnessing.
She couldn't hide her curious yet worried look, then she executed a
quick sign of the cross. I had to stop myself from bursting out
laughing: the poor woman obviously thought she had just been privy to a
miracle in the frozen food section. I returned to my seated position
and headed off triumphantly with the peas in my basket. I had either
made that woman's day or ruined it, but either way it was kind of fun
to cause a stir.
It seems strange that in some ways my being diagnosed with MS was a
good thing, a positive thing, because MS has made me a better person.
Everyone told me that MS was devastating, that it would destroy my body
and undermine my self-worth. No one ever discussed how empowering
something like this could be. Over time I have learned to understand
who I was before I had MS as much as I have been able to accept who I
have become with MS. My disease has taught me to accept my faults, my
strengths, my weaknesses, my talents -- my self. It has also taught me
to enjoy life in all its guises, the small pleasures as well as the big
ones.
My mum says it best: "Never underestimate a person with a disability,
because if they can survive getting up each morning, they can do
anything." Over time I have learned to believe her. I am no longer as
physically able as I once was -- I can't walk, dance, or run along the
beach -- but inside I am a better person than I was before. My MS has
taught me a lot about life and who I am, about what is important and
what is trivial. I can still be selfish and self-centered, just like I
was 230 before I got MS, but now I can more easily acknowledge it and
realise its place in the big picture.
No longer do I waste time being impressed by fancy houses, expensive
cars or beautiful clothes -- I still love beautiful things, but they do
not have to be expensive or a particular brand name to please me. A
bunch of sweet-scented flowers, thoughtfully given, will impress me far
more than an expensive present These days I readily tell people I love
them, because my frequent visits to hospital since my diagnosis have
reminded me of how mortal I am, how fragile life can be. Now I know
how important it is to disclose how I feel because I may never have the
opportunity again, and that moment may be lost forever. Life is too
unpredictable.
Life is also far too short, so one more motto of mine is 'play hard'.
MS has taught me not to put things off or miss out on an opportunity to
try something new. Those years I spent at home wallowing in self-pity
and wasting my life are the reason that I refuse to waste one more day
-- I take life by the throat and enjoy the moment. Those "Just do it'
ads sum up how I feel, so sometimes I do crazy things purely because I
like to break rules and do the unexpected.
My car is a good example of this attitude. When my dear little Toyota
looked too tired to continue, I decided it was time to upgrade to a
newer vehicle. Paul and I discussed the possibilities. Big cars are
very difficult to park in disabled car spots, so the first criteria was
that I needed a small car. Fine, but I had always wanted to own a

convertible. So why not? That narrowed the field of cars in our price
range even further. Then we established that it must have an automatic
hood, because I could not jump up and pull the roof over manually if it

suddenly started to rain. So we bought my 231 white VW Golf

convertible, a Barbie car to me, and definitely designed with a
princess in mind.
Of course, what I had not thought through before I bought this car and
had the hand controls fitted was how other people -- usually total
strangers -- might react. From my experience in public car parks it
would seem that disabled people, if we drive at all, are meant to use
sensible cars, not frivolous sporty ones. It happens surprisingly
often that as soon as I pull into a disabled car-parking spot,
bystanders march towards me with clenched teeth and fists, ready to
confront me over using the special car space. Some even start abusing
me verbally, so I wordlessly open the door, swing out my chair and
plonk it on the ground in front of them, with a big smile to show there
are no hard feelings. I know it's mean but I love to see this sort of
reaction, because by driving my gorgeous car I am breaking down the
stereotypes again and again There are no rules that say my life must be
dull and boring just because I am disabled.
One time Mum and I had been shopping, and when we came back to the car
we found two young guys enviously checking it out. I wheeled over
without speaking to them and unlocked the car, then wiggled in and
threw my wheelchair in the back while my groovy mum jumped into the
passenger seat with a smile on her face. Those guys were so surprised
it was worth a photo. I revved up the car, turned on the radio full
blast, put down the hood and screeched out of the car park like a
twenty-year-old. Mum looked at me, grinning widely, and admitted that
until that moment she had not totally understood my reason for buying
the car -- now she did.
I think I love this car of mine because in a way it's like 232 sailing.
Even in the colder months I rug up warmly and drive with the top down
so the wind can blow my hair around. I can look up into the sky, watch
the clouds, hear the sounds of life all around me and celebrate just
being here. Often while driving my car I say thank you to God for
letting me stay alive, for giving me the strength to carry on, and for
the opportunities that I have to share the lives of others. It is a
great world and in those moments particularly I feel very lucky to be a
part of it.
I will probably never completely adjust to living in a wheelchair
because life from a chair can be so hard, but I get on with it. At
some stage over the last few years I came to the resolution that it was
through no fault of mine that I got MS. Not only did I not deserve to
have it, but there was nothing I could do to change the situation. The
only choice was to get on with life. I had finally convinced myself to
stop looking for the answer to the question 'why me?" and accept 'why
not me?"
Getting MS was just bad luck, and my God gives me the strength to keep
on. I believe many people would question their faith when faced with a
situation similar to mine: I did at first. However I found being angry
with God, blaming Him and being at odds with the world, incredibly
destructive. Now I seldom ask for anything in my prayers, I just say
thank you for the wonderful things around me: the beauty and colours of
our amazing world, the sun on my skin, the wind in my hair, the smile
on my daughter's face, the warmth I experience in my husbands loving

arms. Asking God for things all the time just made me more
dissatisfied. Saying thank you for things makes me feel blessed and
lucky to be a part of such a special life.

233 I would not wish my physical situation on my worst enemy.

Sometimes, when depression takes hold, I feel as if my mental state
borders on the unstable because I'm so out of control, unhappy and
without purpose. But if this had to happen to someone, maybe it was
better that it happened to me -- I have found the inner strength to get
on with life and enjoy a level of peace I may not otherwise have found.
And I do not undervalue the fact that Paul, Prue, my family and
friends collectively give me so much of the strength that empowers me
to keep doing my best and enables me to be Anna, despite the MS. They
are my inspiration.
So when people ask who inspires me to go on, I answer honestly that it
is my family and friends. But there is someone else who motivates me
too: my memory of the person I was before MS. I remember being so
strong and having so much belief in myself that I could do anything.
Ambition was my driving force. The only difference between now and
then is that I used to admire or judge people by their success,
possessions, connections and material wealth. Now I just admire the
ambition to strive to be good and do one's best. That is what I want:
to be the best I can possibly be in all facets of my life, so I use my
memories of the old Anna to give me an insight into the ambition and
drive I need to get through the hard times and to achieve high levels
of excellence in the good times.
I reckon that the only way to truly judge success is when you are lying
on your deathbed, reflecting on the things you have or have not
achieved over your lifetime. How many people would really be counting
up the number of corporate takeovers they had made as their measure of
success in life? Surely asking yourself who has loved you, and allowed
234 you to love them back, is a much more accurate measure of success
in life, isn't it? I am sure it is. Success is knowing you have done
your absolute best and had people you love to share your life.
The year 2001 marked the tenth anniversary of my marriage to Paul and
twenty years of our being partners. After all those years and all the
trials we have had to endure together, my heart still beats fast when
he walks into a room. And, even after all these years, when he smiles
at me I cannot believe that those beautiful eyes are looking at and
loving me, just me.
Paul was such a good-looking boy and that's why I chased him -- I
wanted the gorgeous surfer. Now a handsome man, I am sure some people
look at us and wonder why Paul is with me, a disabled woman in a
wheelchair. Maybe they even feel sorry for him, but I know if Paul
ever got the opportunity he would tell them that they are crazy,
because he is committed to me and we still have a romantic, fulfilling
relationship. Paul often tells me he loves me, and if I ever doubt
this he is quick to remind me that he did not marry the MS, he married
me.
Okay, I have MS. I live with the spasm associated with it, with
depression on occasion, with the complications of being in a
wheelchair. But fortunately I have a serious addiction to life and
this is what I focus on -- the joys of the journey. I love to drink
tea from delicate china cups. I love to plant flowers in my garden and
watch them grow. I love to see my husband and daughter talking and
playing together. I love to make my students laugh. I love to raise

my sails high on the mast of Polar Bear and watch them billow in the
breeze.

When I contemplate my life and realise how much I enjoy 235 such
precious moments, I thank God for letting me stay in this world,
because despite MS, I am still having a great time. And when people
ask who wants to have a go, I raise my hand and ask, "Why not me?"
236 Multiple Sclerosis Society Contacts
AUSTRALIA
MS Society of Australia Suite 503, Level 5 157 Walker Street North
Sydney NSW 2060 Tel (02) 9955 0700 Fax (02) 9955 0900 Email
badler@mssociety.com.au Website www.msaustralia.org.au MS information
line
1800 CURE MS (1800 287 367)
Australian Capital Territory Gloria McKerrow House 117 Denison Street
Deakin ACT 2600 Tel (02) 6285 2999 Fax (02) 6281 0817 Freecall 1800 356

354 Email info@ms.org.au 237 New South Wales Level 11, 447 Kent Street
Sydney NSW 2000 Tel (02) 9287 2929 Fax (02) 9287 2987 Freecall 1800 042
138 Email msnsw@msnsw.org.au Northern Territory PO Box 867 Nightcliff
NT 0814 Tel (08) 8948 5300 Fax (08) 8948 5344 Freecall 1800 812 311
Email ms.nt@octa4.net.au Queensland Locked Bag 370 Coorparoo DC QLD
4151 Tel (07) 3840 0888 Fax (07) 3840 0813 Freecall 1800 177 591 Email
mssociety@msqld.org.au South Australia 274 North East Road Klemzig SA
5087 Tel (08) 8360 0800 Fax (08) 8360 0899 Freecall 1800812311 Email
ms@ms.asn.au Tasmania 15 Princes Street Sandy Bay TAS 7005 238
Tel (03) 62244111 Fax (03) 6224 4222 Freecall 1800 676 721 Email
aboutus@mstas.org.au Victoria The Nerve Centre 54 Railway Road
Blackburn VIC 3130 Tel (03) 9845 2700 Fax (03) 9845 2777 Freecall 1800
CURE MS (1800 287 367) Email infoline@mssociety.com.au Western
Australia ParkhillWay Wilson WA 6107 Tel (08) 9365 4888 Fax (08) 9451
4453 Email multiple@multiplewa.asn.au
NEW ZEALAND
MS Society of New Zealand Level 7, Rossmore House 123 Molesworth Street
(PO Box 2627) Wellington Tel (04) 499 4677 Fax (04) 499 4675 Email
info@mssocietynz.co.nz Website www.mssocietynz.co.nz MS National
Information Service (outside Wellington) Freephone 0800 2 HELP MS (0800

243 5767)