The Star WEDNESDAY AUGUST 5 2009
NEWS
Confronted with a cruel disease for which there is no known cure, quadriplegic Tony Katzew lets
Alex Eliseev inside the stillness to reveal a man who is not waiting to die, but getting things done before he does
KEY turns. A small door
A
mind.
opens. A memory breaks
free from a virtual safety-
deposit box inside Tony’s
It’s May 2002, the day he was
diagnosed.
He’s talking with his father
Henry, a retired journalist and lover
of poetic phrases. Henry says many
things to his son that day, but five
particular words crawl clear of the
quicksand of time: “Every winter
leaf must fall.”
With these words begins the
journey of a man who, statistically,
should now be nothing more than
a pile of bones resting in the earth.
But Tony doesn’t do statistics.
He doesn’t buy “it’s God’s will”, and
finds “when it’s your time, it’s your
time” too impractical.
He says we know nothing
about time.
Tony’s travels have not been
across borders and seas, but
through years of searching for
peace and purpose; of unwillingly
extinguishing a love for his wife
that began two decades earlier; of
reaching out to his sons from a body
frozen in quadriplegia; of fighting
off thoughts of suicide; of releasing
anger; of atonement; of finding
spirituality and faith; and, most
importantly, of never asking why.
Chapter 1: Serial charmer
I didn’t find Tony. Tony found me.
From his bed at the tranquil
Hospice in Houghton, he watched
the world’s reaction to the chilling –
and very public – suicide of
American Professor Craig Ewert,
a sufferer of one of the cruellest
diseases known to man: motor
neurone disease (MND).
Ewert was in the final stages of
the disease and could not face the
terrible, and painful, end.
Slowly, the disease – for which
there is no cure – was shutting
down his body by killing off his
muscles. Like a computer closing
programs, one by one, before
switching off.
“You can only watch so much
of yourself drain away before you
look at what is left and say ‘this is
an empty shell’,” Ewert told the
media. “Once I become completely
paralysed, then I am nothing more
than a living tomb… I have death,
or suffering and death.”
Tony, who also has MND, didn’t
quite see it that way. And he wanted
his voice to be heard. In mid-
December, he asked his doctor
to call me and invite me for an
interview. His message was: suicide
is not the only answer.
I quickly discovered that Tony
was a serial charmer. Every nurse
and doctor who met him said he
filled the hospice with a strange
magic. He spewed out colourful
stories, cracked dry jokes and,
somehow, always kept busy. He was
not waiting to die – he was getting
things done before he did.
For the past five years, Tony had
been completely paralysed. The
only movement MND allowed him
was his face. Yet Tony lectured
medical students, wrote his
memoirs (titled: Happy Chappie),
made an educational film about
MND, headed a small in-house
social club (“Le Club”), drank
sundowners, entertained friends,
read and watched sports.
He was also in control of his
treatment. Consultations with
doctors were more like board
meetings, of which he was the
chairman.
I was impressed and humbled by
Tony’s spirit, but something else
stirred me that day. We were perfect
strangers and yet Tony’s tales were
speckled with intimate truths.
They were the kind of details –
a troubled marriage, a rebellious
son – seldom traded with outsiders.
Tony hid nothing.
When I returned three months
later, I asked to be let inside his
private world. When we adjourned
the first day, we had barely covered
his school years.
Chapter 2: Fallen on thorns
Tony was born in 1946 and shares
a birthday with the 14th, and
current, Dalai Lama. He also shares
the day with George W Bush and
Sylvester Stallone – but who cares
about them?
“On July 6, Tony Katzew, the
Dalai Lama and George Bush were
born. In that order,” he chuckles.
His family’s roots lie in
Lithuania and he describes himself
as “an Afrikaner boy who
happened to be Jewish”.
When he arrived at King David
Linksfield, he had never before
worn shoes to school and didn’t
PHILOSOPHICAL: Tony Katzew has suffered from motor neurone disease – one of the cruellest diseases known to man – for seven years. Unlike American
Professor Craig Ewert, who recently committed suicide with assistance, Katzew is determined to live.
own a pair of trousers. He hated
King David, underachieved and,
when he was 15, was told by his
biology teacher he was the worst
student she had ever encountered.
After passing matric at a
boarding school in Meyerton, south
of Joburg, he sent a telegraph to
inform her that her prediction of
his failure was wrong.
In his prime, Tony played rugby,
hockey and tennis, and claims he
could run the 100m in 10.4 seconds.
Interested in economics, Tony
went to college and studied to be
a teacher. His path led him to the
mining town of Welkom. When
his English-speaking rugby team
defeated one of the Afrikaans
AFRIKANER JEW: Tony Katzew’s
family trace their roots to Lithuania.
powerhouses, he celebrated
a victory in the “cold war between
me and the Broederbond”.
His private battles against the
Broederbond were filled with
Woody Allen-style neurosis and,
after being passed up for a big
promotion, he drove to the office of
a director of education and refused
to leave until he was given an
audience and a chance to air his
allegations of anti-Semitism. He
was convinced the Broederbond
had infiltrated everything –
especially the school system.
It was in Welkom that he met
his second wife, Celeste. His first
marriage had been a bitter lesson
in heartbreak.
A pastor’s daughter, Celeste was
teaching Afrikaans at the time and
was very much not Jewish.
“You don’t stop matters of the
heart,” Tony explained.
In 1983 – after just a few months
of dating – Celeste made a surprise
proposition.
Standing between the frozen
food section and the spice racks at
Pick n Pay, she said “Marry me.”
“When?” Tony replied.
“Today’s Monday… How about
Saturday?”
“I’d better let my folks know.”
The small private wedding took
place on April 16 that year and, five
years later, Tony and Celeste were
a family of four.
In the years that followed, Tony
tried his hand at banking (bringing
his family back to Joburg), started
a few businesses and eventually
moved back into education.
Teaching, he said, was in
his blood.
During the late 1990s, MND
began announcing itself to him. At
first it was patient, pushing him off
his bike or tripping him up at home
from time to time. In 2002 it stepped
forward to claim responsibility and
began working rapidly to break
apart the mechanism that made
Tony move.
As his muscles began to wither
and his legs grew weak, Tony
battled to rise from the toilet seat.
He went to the MND association
and asked them for a special seat to
make the toilet bowl higher. This
bought him an extra six months
of independence.
After that, he went back,
received another customised seat
to fit onto the previous one, and
held off the inevitable for another
nine months.
When he returned for a third
extension, he was told there were
no more seats and he would have
to use a bedpan.
Tony wasn’t ready. He asked
a friend (a handyman) to custom-
build one more extension for
him, which he later gave to the
association.
“I was using a seat, on a seat, on
a seat of the toilet seat,” he said.
This was not an attempt to beat
MND; he knew he couldn’t. His
philosophy was to live alongside
it for as long as he could.
In the words of one of his
favourite poets, Shelley, Tony
understood he had fallen on life’s
biggest thorns and bled. But he was
determined to yank some of them
out, limit the suffering and push on.
On March 27, 2004 he took his
last steps.
It was also the first year a doctor
predicted he would be dead by
Christmas.
Every winter leaf must fall.
Chapter 3: Lover to nurse
Somewhere along the journey,
a pastor told Tony his disease was
God’s will.
“That’s nonsense,” he replied.
“The God I know would not will
me to die. Maybe it’s part of some
plan, but to say it’s God’s will is
bunkum.”
The pastor wasn’t thrilled.
“It’s okay. He was an idiot,” said
Tony of the pastor.
Tony is no atheist. He doesn’t
know who God is – Jesus, Buddha,
Allah – but believes in Him and
talks to Him daily. Sometimes he
vents his anger. Sometimes he asks
for strength. He doesn’t pray
in a traditional way; he has
conversations with God.
He is also a spiritual man, who
meditates with the help of a third
cousin who is a “psycho-guru”
in America.
13
Each week, Tony spends an hour
on the phone with his guru Ken –
a gay Jew who visits Hindu palaces
to soak up wisdom. Ken also likes to
march in Pride Parades with his
dad and has adopted a Cambodian
orphan. Despite being a busy
psychologist, he guides Tony
through his traumas.
“He is teaching me spiritual
exercises. The thinking, the
breathing… He helps me untie the
knots in my stomach.”
Sometimes Tony closes his eyes
and imagines he is inside his own
body, sweeping up piles of junk
with a broom.
In the early years, Tony
promised himself not to question
why he was sick. It was a waste of
time, because there was no answer.
His elder son Rowan, upset at
the news, spent two years in Europe
after learning that his father would
probably die within three years of
being diagnosed. Very few sufferers
make it past five years.
After returning, he went to
It took me a long time to realise that I’m still
the adult… the father in the relationship
study film in Cape Town. Thinking
about his father dying “scared the
hell out of him” and “he couldn’t
bear to see me”.
He slacked off in his martial
arts, took up a job as a club bouncer
and got caught up in fights.
His younger son Gareth stayed
and studied law. He didn’t make it,
and changed over to information
technology.
For a while he dated an older
woman, and Tony was worried
about his son committing too much
too soon.
Time calmed the angst, and both
Rowan and Gareth, he hopes, are
now back on track.
“They are starting to come to
terms with it.”
Tony, who also studied
psychology, understands that his
boys, in their early to mid-20s have
busy lives. Work, gym, girls…
whatever they do, he says, they
have “mitigating circumstances”
for not phoning him every day.
“It took me a long time to realise
that I’m still the adult… the father
in the relationship. Even if I call
them and they don’t call back,
instead of getting angry I just call
again,” he said.
“They have a great respect for
me. I think they’re great guys.”
The distance between him and
Celeste is far more painful.
After the diagnosis, he said,
their physical connection was
severed.
Celeste began to withdraw. She
struggled to swop roles from lover
to nurse, sometimes vomiting when
she needed to clean up after Tony.
She battled to be hands-on with
a man who was becoming a wooden
PICTURE: BONGIWE MCHUNU
puppet in the hands of those
around him.
She began kissing him on
the cheek.
Perhaps it was too painful.
People close to Tony asked him
whether she was not leaping off
a sinking ship.
About two years ago, she
admitted she had had another
relationship. Tony wonders
whether there were not more. They
spoke about divorce, Tony offering
to sign the documents if she would
pay the costs. She declined.
During one conversation, she
told him that she loved him as
the father of their sons.
“I care a lot for you,” she said.
“But there are no romantic
feelings anymore.”
They argued over her stance
that she had sacrificed so many
years for him and about medical
costs, which soared towards R30 000
a month.
Some visits ended with Celeste
storming out. Others were more
peaceful, with the pair sharing
a bottle of wine.
It took a long time for Tony to
force himself to fall out of love.
“I had to wean myself off her
emotionally and romantically,” he
explained. “I don’t love her in the
conventional way a husband loves a
wife, but I care very much for her.”
The process didn’t come easily,
and Tony sought Ken’s help. He
worked to change gears and see
their relationship differently.
“We’ve now established an
understanding and a better
relationship. We are friends. Not
the greatest of friends, but we’ve
been worse friends.”
An important part of Tony’s
journey was to understand what he
could and could not do. Learning
his limitations, and refusing to give
up some basic pleasures, was key to
living inside the stillness.
He asked a friend to put up
a flipchart and write down all the
things he liked doing, and how he
could continue doing them.
He loved to read newspapers,
have sundowners and chat to his
family. He could still do those.
Washing his car would be
trickier. So he decided he could
still be present when his car
was washed.
Some things, like visiting
Lithuania, he will never do. He has
accepted that.
Early on, he thought about
suicide. Most, if not all, MND
sufferers do.
He vowed that the day he
became “a vegetable” or had to
wear adult nappies, he would end it
all. “It’s not going to happen,” he
told himself then.
“But time mellowed me.
I present you with the evidence
in nappies,” he says now.
“My thoughts of suicide were
nonsense. It would be the most
selfish act of my life. What an
injustice I would be doing to
my family.”
Tony is considered emotionally
stable. Yet the depression lurks.
A few months ago he locked
swords with some of the darkest
demons he has faced. The
depression lasted two days and
was sparked by nothing more
than a desire to braai.
He woke up in the morning and
GAME FOR
ANYTHING:
Tony
Katzew was
a keen
sportsman
in his earlier
years,
playing
rugby,
tennis and
hockey.
Struck down
by motor
neurone
disease, he
has become
more
internally
oriented,
and often
meditates
with a
‘psycho
guru’.
PICTURES:
HAPPY
CHAPPIE, AN
AUTOBIOGRAPHY
his mind took him back to his
pre-MND days.
So often he had sent his family to
the movies, unpacked the braai and
lit a fire. He loved to cook the fleshy
pieces of meat, listening to the
sizzle and feasting on the smells.
It was his time to be alone, lost
in thought.
Lying on his back in his room
at the hospice, he so desperately
wanted to braai. To get up, walk out
into the sunshine and get his hands
dirty with the black charcoal.
But in almost five years he had
managed to move only a finger and
a toe. His helplessness sent him
hurtling into despair.
In the midst of his anger, he
began talking to his disease.
“The MND was saying to me:
‘I don’t have a head, or a tail. You
can’t beat me. I’m going to destroy
you. Give up, and I’ll take you
peacefully’.”
To give up would be to stop the
lectures, the visits, the hobbies.
To wait for death.
Deep inside, he knew he could
not surrender. But how desperately
he wanted some peace.
Eventually, the dark mist lifted.
“I needed that anger, followed
by vulnerability, to keep me on
course.”
Chapter 4: Falling silent
Is he frightened of death?
“The more you are able to talk
about death, the easier the fear
becomes to handle. I don’t think
about it much. But I do think I am
ready for it.”
Tony knows the disease,
he knows how it will end and he
has spoken to several people just
before they died.
“Do I fear it? Not now. I don’t
know how I’ll feel later, but fear
doesn’t seem to play a very big part
in the dying process.”
When he is at death’s door,
however, the doctors have been
asked to fill his drip with his
favourite white wine.
A final, and crucial, part of his
preparation was to make peace
with his past.
As his body grew weaker, his
mind and memory grew sharper.
He travelled back in time, to watch
himself burying a green bar of
soap he had stolen from a shop.
Somewhere in his subconscious, he
felt guilt about the petty crime.
“Sorry about that one,” he told
himself, and moved on.
In his travels he encountered
people he had hurt or disappointed.
He made peace with them. In one
case, he actually phoned an old
army subordinate on whom he had
been particularly tough.
“You were worse than Hitler,”
the man told him. Which, to
a Jewish bombardier, was
quite something.
Tony apologised and was, of
course, forgiven.
Now Tony lives in a world of
virtual “safety-deposit boxes”.
His mind is full of them, and he
has learnt to open and shut them as
he pleases.
“When all you can do is use your
brain, you learn one art. You have
to compartmentalise your
thoughts, or your mind will be full
of thoughts 24 hours a day.”
Tony has many compartments:
death; his son in Cape Town;
lectures; happy memories;
problems…
“If I want to laugh, or analyse
fear, I just open up the right one.”
When he doesn’t want to
think about dying, he locks the
thoughts away.
At night, when he is about
to take his sleeping pills and
go to sleep, he closes all the
compartments.
Tony’s voice is starting to strain.
It’s becoming rough, slowing down
his speech and forcing him to
stumble over long words. One of his
vocal cords has been half killed by
MND and he is preparing to learn
how to use a mouth-operated
computer to communicate. The
idea of falling silent terrifies Tony.
But it’s part of the journey.
Eventually his lungs will
collapse and his body will switch
off. Every winter leaf…
When he dies, he hopes to
find the answer to why the disease
chose him.
But before that, his eighth
winter awaits.
“Only when you drink from the
river of silence shall you indeed sing.
And when you have reached the
mountain top, then you shall begin
to climb.
And when the earth shall claim
your limbs, then shall you truly
dance.”
– Kahlil Gibran