K

ALEIDOSCOPE

EXPLORING THE EXPERIENCE OF DISABILITY THROUGH LITERATURE AND THE FINE ARTS

Number 72
Winter/Spring Online 2016

The Complexity
of Human Connections
"A Year In Iowa" by Richard Luftig
"Men of Science" by T.L. Sherwood
"The Baker Nuthouse" by Deserét Baker

K

ALEIDOSCOPE

Winter/Spring 2016
Number 72

EXPLORING THE EXPERIENCE OF DISABILITY THROUGH LITERATURE AND THE FINE ARTS

Contents

 PERSONAL ESSAY

 EDITORIAL NOTE
The Necessity and Complexity
of Human Connection

A Walk Around the Corner
4

16

Nadia Ibrahim

Gail Willmott
22

Changing Faces

 FEATURED ESSAY
6

The Baker Nuthouse
Deserét Baker

Julie Guirgis

28

The OCD Ties that Bind
Simon Hardy Butler

 FEATURED ART
Turning Obsession into Art

32

Just What I Needed

Sandy Palmer

Erick Mertz

 FICTION

The Last Walk

A Year in Iowa

10

38

56

Mary Dyer Hubbard

Richard Luftig

 POETRY
For the Love of Rudy

26

Debbi Simmons Harris

Healing Hands

5

Lynsie Mae Buteyn

44

Katherine Westermann

Men of Science

My Implanted Intravenous Port

50

An Old Man, Tired,
Ambles Home

8

The Doctor of Poetry
(William Carlos Williams)

9

Michael S. Morris

T.L. Sherwood
1

The Last Sponge Bath

15

December

24

Winter Rose

25

James B. Nicola

At Arm’s Reach

20

No More Comfort Please

31

Glenda Barrett

21

Claire de Lune Reprise
Gail Eisenhart

Grant Manier, Peacock Lane, 2012, Eco-art, 18” x 24”

41

November Twilight
Joan Mazza

The Building of the Nativity

42

Mike Traber

It Is Taking

49

Biscotti

59

Rae Rose

Autism

43

My Disappearance

43

Jennie Chapman Linthorst

October’s Show
A Gathering of Geese

Lola Neff Merritt

Med-time

52

47
53

Upon My Delay Coming
Home from the Hospital
to Join My Twin Sister

48

The Blind

48

Wishbone in Moonglow

53

54

Mary Langer Thompson

Yuan Changming

Sometimes What We Miss
Nancy Scott

2

Jerry Hauser

The Literature of Prescription

 BIOGRAPHICAL NOTES

Barbara Astor

Childhood Secrets

58

60

Rita Maria Martinez

Sandy Olson Hill

Elegy– “I Can Almost
See and Hear You”

55

63

Staff

PUBLISHER
Howard Taylor, President/CEO
United Disability Services
EDITOR-IN-CHIEF
Gail Willmott, M.Ed.
MANAGING EDITOR
Lisa Armstrong
ART COORDINATOR
Sandy Palmer
EDITORIAL ASSISTANTS
Lynne Came
Angela Miller
Kathleen Sarver
EDITOR-IN-CHIEF EMERITUS
Darshan Perusek, Ph.D.
HONORARY EDITOR
Phyllis Boerner
ART CONSULTANT
Jennifer Wexler
Director of Visual Arts
VSA, Washington, D.C.

Kaleidoscope (ISSN 2329-5775)
is published online semiannually.
Copyright © 2016 Kaleidoscope Press
United Disability Services,
701 S. Main St., Akron, OH 44311-1019
(330) 762-9755 Phone
(330) 762-0912 Fax
email: kaleidoscope@udsakron.org
http://www.kaleidoscopeonline.org
Kaleidoscope retains non-exclusive world
rights to published works for purposes of
reprinting and/or electronic distribution. All
other rights return to the writer/artist upon
publication.
We request credit for publication as
follows:
Previously published by
Kaleidoscope: Exploring
the Experience of Disability through
Literature and the Fine Arts,
701 South Main St.,
Akron, OH 44311-1019

MANUSCRIPT REVIEW PANEL
Fiction Review
Mark Decker, Ph.D.
Bloomsburg University
Bloomsburg, Pennsylvania

Indexed in Humanities International
Complete and the MLA International
Bibliography non-Master List. Listed in
International Directory of Little Magazines
and Small Presses, Magazines for Libraries,
The Standard Periodical Directory.

Poetry Review
Sandra J. Lindow
University of Wisconsin-Stout
Menomonie, Wisconsin

Submissions:
Email or online submissions preferred.
If submitting hard copy, send copies of
originals with SASE if you want your work
returned. The editors do not assume responsibility for returning submissions without
ample return postage. Address all correspondence to the editor-in-chief.

Kaleidoscope, beginning in 1979, pioneered the exploration of the
experience of disability through the lens of literature and fine arts.
Fiction, personal essays, poetry, articles, book reviews, and various
artistic media including two-dimensional art, three-dimensional
art, drama, theater, and dance are featured in the pages of various
issues.
This award-winning publication expresses the experience of disability from a variety of perspectives including: individuals, families,
friends, caregivers, healthcare professionals, and educators, among
others. The material chosen for Kaleidoscope challenges stereotypical, patronizing, and sentimental attitudes about disabilities.

3

EDITORIAL NOTE

The Necessity and Complexity
of Human Connection
Gail Willmott

L

ife is made up of billions of individual moments that comprise
our experiences, some of which
are seemingly ordinary and of little
consequence, though it depends on how
we choose to see them. Other events
(collections of moments) will immediately and profoundly affect us. One
of the most important factors that help
give meaning to our life experiences is
our ability, even our basic need, to form
connections with other people.
Human beings are innately driven to
make connections with others, first as
a matter of basic survival, then to develop some kind of structure, a sense
of order within a community to ward
off chaos, and finally to satisfy deepseated emotional needs. Imagine what
life would be like if each one of us
lived life walking around in our own
hermetically sealed, impermeable, plastic bubble. Such a life would indeed be
empty, insipid, and lonely. In fact, if we
were each locked in our own individual
bubble, we would have existence, but
not life.
It is primarily through the connections
we make with others that we are presented with opportunities for growth
and development. There is no change
or progression in a vacuum. It is our
interdependence that spurs individual

growth. The accumulation of our life
experiences, by and large created and
affected through interactions with others, is what makes us who we are for
better or for worse. And as long we are
alive, we are works in progress.
Living together is complicated and not
always easy. In any family or social
group each individual has many needs,
concerns, ideas, and opinions that
must be taken into account. It is often
a tremendous juggling act. And since
change is the only constant in life, the
relationships into which we are born
or those we form by choice later, are
always in flux.
The pieces in this issue of Kaleidoscope focus on the complexities of
several different types of relationships
including the impact that disability or
illness can have on them. As a reader,
you look in on a family in which both
mother and son have bi-polar disorder. You will see the effect of severe
depression on a marriage. You will
bear witness to the love of parents for
their children, even when a mother
has been beaten down by abuse, and a
child doesn’t remember his father who
has endured a forced absence from his
family. There is an essay in which the
parent-child relationship is reversed
due to dementia. We have a poignant
essay revolving around a young woman

and her service dog, and the pain of a
premature ending to that relationship
due to a freak accident. Readers will
journey with a hospital chaplain as she
helps a patient/friend face the harsh
reality of bilateral amputation, and also
with a man whose accidental career as
a case manager for people with developmental disabilities unfolds.
All of the prose in this issue, whether
fiction or nonfiction, reflects the often
difficult realities of life and the resilience of the human spirit despite those
obstacles.
Be sure to explore our strong selection
of poems, many of which also revolve
around the complexities of relationships. In addition, you will have the
opportunity to view amazing eco-art by
Grant Manier, created using paper and
other recycled materials.t

Gail Willmott

4

POETRY

Lynsie Mae Buteyn

My Implanted Intravenous Port
Alien of mine, you entered me foreign,
a cold metal disc against warm blood.
You are nothing but a tiny portal with limbs attached,
but you managed to confiscate my body.
My throat slit, while awake, to accommodate your tubular neck of plastic,
forcing a merger with my veins.
Tissue pried apart, strained to support your weight.
The day you raped me and held my heart hostage to your trespass,
it ceased to beat in protest.
Though I admit, your nearness to my heart, brings that part of me closer than ever before.
Having you in me is like constantly wearing a little toilet seat on my chest
flushing you with saline, heparin, and drugs
I realize I can’t live without you.
The waste that fogs my brain, attacks my organs, and pollutes my blood,
is all subdued by the artillery you shuffle through me.
But we never will be one.
I avoid you like a trigger to a gun.
One careless caress and you eagerly press up against my lover’s touch.
Every bit of me is aware you don’t belong between us.
That moment, but only that moment, his touch becomes unwelcome
I turn away, saying “touch me anywhere but there.”
Those times, make me eager for the pain the needle brings me
as it bores into my skin to take a stab at you.
You, the medium for the jail I cart.
You, get in the way of sleeping, dressing, swimming, bathing, and wearing skimpy tops.
You, make me expose my chest to all who want access.
My nipple constantly wearing see-through sterile dressing.
Breasts now extensions of you.
You never will be right
setting a precedent for all other opportunistic invaders
till I’m so bionic that my body passes on before me,
leaving me trapped in a matrix of machines
that masquerades as a human.
I’m the alien now.

5

FEATURED ESSAY

The Baker Nuthouse
Deserét Baker

I

went to a fondue party one night—
not so much because I wanted to,
but because I wanted to placate a
friend. When we got there, I noticed
vinyl lettering on the front door that
said, “Fenn Haven.” I learned that after
a local book club read The Lost Memoirs of Jane Austen, by Syrie James, the
ladies involved decided to follow suit
and name their own houses.
I thought about that for a while. What
could I name my home? “Haven” had a
nice ring to it, but it was taken. “Baker
Bungalow” sounded fun, but I knew
my husband would sooner eat a live
goldfish than have that plastered to the
front door. Nothing else that I paired
with our last name hit the right pitch.
“Baker Cottage,”—all harsh consonants
. . . and with the oversized monstrosity
that we accidentally owned, nothing
like “cottage” would fit, anyway.
But we couldn’t call our place, “Baker
Estate,” because we lived in a closebuilt neighborhood of track houses that
varied only slightly in their shade carefully chosen from the beige rainbow.
Further, our yard could hardly be called
“grounds.” With the teensy patch behind our house so small that no sunlight

6

could reach it around our two stories,
and the speck in front barely separating us from the sidewalk, we were by
no means in possession of the property
necessary to call our home an estate.
And Baker was too common a name for
those who own estates. After all—it’s
the name of a workaday tradesman—
hardly a Radcliffe, an Evertime, or a
Mollaby.
Finally I decided my house was unnameable. And the only moniker that
would have suited us anyway would
have been, “Baker Nuthouse.” As funny as I thought that was, my husband,
again, would never relent to that sort of
advertising.
Allow me to share one of those illustrative mornings—one where the madness of one member grinds and flares
the madness of another, until we are
a veritable ping-pongery of bouncing
insanity.
Sam awoke angry. After dressing for
school, he remembered that the fifth
graders had to perform for their parents
in a choir concert. That, itself, was
enough to incite feelings of anxiety and
dread, but something more harrowed
him. On the day of dress rehearsals,

trying to start some friendly banter with
a boy standing next to him on the risers, Sam said, “All this noise gives me
a headache.”
The little troll glared at my son. “Every
time I look at you I get a headache.”
My son is many things, but ugly he is
not. Even from the time he was in nursery school, he had the girls batting their
baby lashes and wanting to share their
graham crackers with him, swooning in
the wake of his oblivious splendor. The
sight of him couldn’t begin to cause a
headache.
But Sam has childhood onset bipolar
disorder—an illness that I would wish
on no one—including that snarky
pre-middle schooler who senselessly
insulted Sam.
He took that nasty remark hard, in the
deep and wide way that we who have
bipolar disorder do. It hurt him more
profoundly than the other boy could
imagine. And the pain carried over to
the next morning.

So—remembering the concert, he began to wail.
And wail.
And did I mention the wailing?
My husband went upstairs to intervene.
“What’s the matter?” he asked.
“I have a hard time remembering
things,” Sam said. “I don’t know the
words to the songs I am supposed to
sing today.”
Trying to offer comfort, my husband said, “Didn’t you learn them in
school?”
“Yes,” Sam said, frustrated. “But I can’t
remember them. And I can’t control my
emotions.” He ramped up the deluge.
At this juncture, his habilitative therapist (not REhabilitative—you can’t
re-up something that never was) arrived. He stomped down the stairs and
heralded her appearance with all the
venom he could muster. “Don’t make
me go with her,” he said, as though she
were not present. “I hate it.”
That was the signal to cue up the wrestling match: Backpack ready? Lunch?
Where are your shoes? You did take
your medicine, right?
By the time he left, I had sunk into
what They Might Be Giants call,
“Hopeless bleak despair.” For eleven
years I have sought his happiness. The
lengths I have gone to! From play therapy (wherein he told the therapist that

he was following Satan) to the eventual
psychiatrist (there he told about the
voices in his head—one of whom was
Satan), I have read, studied, researched,
prayed, transported, supported, and
done all else in my power to help him
have just one happy day.
“Sam wrecks our family,” I texted my
husband after he got to work.
“When was the last time you exercised,” he texted back.
Ping! And I’m off.
I had to feel huffy at his text for a
couple of reasons. First, I wanted to
be self-righteous and indignant about
how he failed to validate my woes. But
second, the underlying reason for my
response was that my husband called
me out on my junk. Exercise has a remarkable impact on my mood—do it,
and feel better—don’t, and feel worse.
It’s that simple, really.
So.

we don’t like can be altered—central
heating and air conditioning to winterize the summer, transportation at the
turn of a key, and popcorn that comes
salted and buttered from bag to bowl
in three minutes. We’re no longer accustomed to enduring, and we would
rather be comfortable than strong.
When I can pull my own emotions
back, detach from the depth and width
of my own bipolar disorder, I can see
things with more clarity.
Perhaps we are the Baker Nuthouse,
though we don’t advertize it on our
front door. We get to learn the lost art
of endurance, and like it or not, we will
be forced to forego comfort and slowly
build strength.
I tucked Sam into bed one night. “Tell
Daddy I’m sorry for being mean,” he
said, his eyes starting to well.
I kissed his forehead.
We’re learning.t

So Sam doesn’t actually wreck our
family. Sam is our family. A vital, witty,
charming part sometimes, and a developing, challenging, struggling part at
times.
Pong. I’m settled.
So what’s the answer?
I’ve started to realize that asking that
particular question is why I’m getting
nowhere. I think the question is wrong.
Some things simply are. Some things
come and stay. Perhaps it’s the modern
world we live in, where so much that

7

POETRY

Michael S. Morris

An Old Man, Tired, Ambles Home
On a blustering wintry night,
the snow blowing sideways, tufting
across the fields, he took up
his crackling whip to bring slow
movement to his horse’s bones
which rattled and creaked,
as he did, as did the carriage,
as did the old thoughts of the new
The horses knew where the road
should be, commandeering through
salutary boulders, broken fence gates,
conjoining hills that dipped to straightaways,
until finally, the ramshackle house appeared
The child inside is breached, a leg out
of place, the umbilical cord taut as
a hangman’s noose. The father is sallow,
the siblings white as flour. The water
roils on the stovetop, sheets
and towels olden but clean await.
The old man becomes a statue,
cold and hard, impenetrable by their minds
He touches the bottom of a foot
with searching hand. With fingers
that have learned how to turn
about an internal being, while
an uproarious clock ticks, telling
of a child being strangled.
Yet, like loosening a tie,
a hooking finger finds the button
choking the child, and so undid it:
after long hours, the imminent
death that would have, without
his ancient calling, prevailed
is living, a crying, wrinkled, pure
pinkness like the outside of church.
Inside, a family weeps with joy;
as an old man, tired, ambles home

8

Michael S. Morris

The Doctor of Poetry
(William Carlos Williams)
After a long day of delivering babies—
and in those days there were complications
galore: breeches, miscarriages, strangled.
There is something about bringing children
into the world—that gush of birth held
in waiting hands cannot be quieted by night.
It is then a dream of clouds, asphodels,
a man whose roiling thoughts are the falls
of a river whose every bend reveals a tale
of history. Babies are like Pink Churches.
They contain in their breath and weal the
possibilities of perfect form. There is
a surgery to poetry. Scalpels, forceps,
clamps are used to hold tissue and muscle,
that the vital organs might be examined.
Could that be why in every photograph
his face is aglow and his eyes are lasers?

9

FICTION

A Year in Iowa
Richard Luftig

W

inter
Kyle listened for signs of life but heard only
the hiss and pop of the coffee maker that he had
turned on. Sarah hadn’t come downstairs; she was in a bout
of depression again.
She was taking antidepressants, but all they had done was
cause her to gain ten pounds—which made her even more
depressed—and uninterested in sex. Things had gotten so
bad that Kyle had taken to sleeping on the couch.
She had always suffered from episodes but never this bad.
They had married twelve years ago, right out of high school
and their problems had started soon after. Now he felt them
piling up like snowdrifts on the county road. He was overwhelmed with trying to keep the farm going and raising
three young children, and could not see many options or
easy solutions.
There were times when she would break out of it, sit on his
lap while the kids giggled. Three weeks ago, she had insisted that they forsake leftovers and go to Pizza Barn. When
Kyle argued how tight their finances were, she said: “Who
cares?” It was for those reappearances of the “real Sarah”
that he lived.
It was past seven a.m. but the children were still in bed. Sarah hadn’t gotten them ready for school and Kyle was going
to have to do it again. With luck, Sarah had at least laid out
their clothes. But lately, she headed to bed right after supper,
getting up only to take the secret painkillers that she thought
he didn’t know about.

10

He emptied his cup. He was glad that he had filled the coffee
pot to the brim. It was promising to be a ten-cup day.

*

*

*

He returned after driving the children to school. Sarah was
sitting at the kitchen table, paying the most urgent bills, putting the others in the “hold off” pile. As usual, the second
pile was higher than the first.
Her bulky terrycloth robe was cinched tightly around her as
if she didn’t want him to notice that she was gaining weight.
Kyle had told her that he didn’t care, but the message didn’t
take.
He studied her face as she pushed the numbers on the calculator. With her lightly freckled face, high forehead and
brown-red hair, he thought she was as beautiful as in high
school. He reminded himself to keep things light.
“Trying to put yourself to sleep again? Those bills are pretty
boring reading.” He sat across from her. “So how bad is it?”
She brushed her hair away from her brown eyes, tucking it
behind an ear.
“Depends” she said.
“On what?”
“On how disastrous you think it is to be a hundred-thousand
dollars in the hole.”

Kyle thought for a moment. “We’ve had worse.”

rained for three weeks straight.

Sarah frowned. “Not this early in the year. We still need to
plant and I’ve never seen the weather this bad for this long. It
could give us a problem in the spring.”

Kyle decided to fake ignorance. “How so? When it thaws,
we plant. Doesn’t matter that much when.”

Each morning, Kyle looked from the barn to the sky, from
the sky to the land. What used to be fields were lakes. The
only way he knew where one field ended and another began
were the ends of fence posts popping out of the water like
tree stumps.

He could see she wasn’t buying.
“How long you been farming?”
“All my life,” he said.
“So have I,” she said, “so don’t try to sugar coat this. Freezing winter, dry spring, drought summer. That’s how it usually
works.”
“That don’t mean it will.”
“It doesn’t mean it won’t,” she countered.
She got up. “Anybody not depressed after reading those bills
should have their head examined. I’m going back to sleep.”
Kyle tried to embrace her, but she moved away. “It’s only ten
in the morning,” he said.
“So sue me. Even if I won, you wouldn’t have the money to
pay.” She went upstairs.
Kyle felt lost. He was a big man, six feet two and well over
two hundred pounds with black hair and the first signs of a
receding hairline. He studied his hands, nicked and
scarred from farming. He had a reputation for being able to
repair just about anything. Why couldn’t he fix Sarah?
He put on his coat and went outside. Halfway across the
yard, he gave the ground a kick with his heel. When he was a
boy, his father had told him that in the middle of winter, if a
farmer could kick through the snow and reach mud, it would
be a cool, wet spring, perfect for planting. His heel hit solid
ice.
Spring
By mid April, it was clear that Sarah had been wrong. It had

But that wasn’t the worst. That prize went to the tractor stuck
in the middle of the field. Kyle had known better than to try
to plow. The sticky ground was what old timers called gumbo. But his impatience had gotten the better of him. He was a
farmer, and he wanted to farm. Winter could do that to you.
Surprisingly, Sarah had been good natured about it. She
teased him about being the dumbest farmer in the county.
The children had picked up on her improved mood. Kyle
pretended to be mad but was grateful.
But depression had kicked in again. The house was a mess
and making sure the children’s homework was finished had
fallen back on him.
As he worked in the barn, he heard sounds of scurrying below the floorboards. Even the field mice were leaving for
drier climes. He remembered the fairy tale about country
mice and city mice. Perhaps the country mice were leaving
for Des Moines.
He walked into the house. Maybe there was fresh coffee.
Maybe Sarah would sit with him and have lunch. That would
be a good sign.
He heard water running upstairs and a commotion in the
bedroom. Sarah might be laying out her clothes before getting into the shower. He thought about getting undressed and
joining her. He imagined her body fitting against his chest,
her head resting on his shoulder after they made slow love.
But he didn’t want to push things. Better to let her make the
first move.
He called up the stairs, “Sarah, I’m pretty much done for the
day. How about joining me for lunch?”
No answer. He wondered if she was ignoring him.
He was on his second sandwich when she walked in wear11

ing a business suit, white blouse, stockings, and heels. Kyle
almost choked on the bread.
“Jesus, look at you. Those aren’t exactly helping-out-onthe-farm clothes. Where are you going?”
Sarah poured half a cup of coffee and drank it black. “I’m
interviewing for a job.”
Kyle wasn’t sure if he had heard her correctly. “Excuse
me?”
She put down her coffee cup, a defiant look in her eyes.
“I’ve got a job interview in an hour.”

“But I’m going nuts here.
I feel like if I don’t get out, try
something new, I’m going
to explode. I can’t breathe
in this life.”

Kyle felt like he had been hit by a tree limb. “What kind of
job?”
“In the secretarial pool at the county courthouse.”
“But why?”
Her eyes widened. “We’re up to our neck in debt and the
bank is holding enough notes against the farm to choke a
horse. The weather stinks and we have barely enough money to get the crops in. Maybe if you got off that tractor and
checked the books you’d realize how bad off we are.”
He shook his head. “We’ve had problems with the farm before and got through them. We’ll do it again.”
Her look softened. “The real reason is I can’t take this anymore, my life a combination of cleaning, folding clothes,
making supper, and trying to be upbeat when you come in.
It’s killing me.”
He tried to make a joke. “You haven’t been that successful
on the upbeat part.”
She didn’t smile. “Yeah, maybe not and I’m sorry.” She put
her hand over his and he remembered why he loved her.

12

“But I’m going nuts here. I feel like if I don’t get out, try
something new, I’m going to explode. I can’t breathe in this
life.”
He wanted to embrace her, let them both have a good cry.
But he couldn’t move.“I need you here to help run the
place” he said. “The kids need you, too.”
“It will be fine,” she said. “I’m just taking a job, not moving to a foreign country. You can get the children to and
from school or they can take the bus. I’ll leave supper in the
fridge and you can heat it up. When I come home I can help
with whatever else needs to be done. I’m not abandoning
you.”
There was an issue Kyle didn’t want to bring up, knowing it
would aggravate her. But he took a breath and said, “Honey,
you haven’t worked since the year after we got married.
What makes you think you’re going to be able to step right
in and do it now?”
Sarah got up quickly, almost toppling her chair. “Now we’re
getting to it, aren’t we? You’re worried that I’m not up to it,
that if the pressure gets too tough, I’ll go off my rocker, and
you’ll be the laughing stock of the county.”
She put on her coat and walked to the door. “Well, thanks
for the vote of confidence.”
Kyle remained at the table as she slammed the door, started
the car and drove down the long, gravel driveway. He
glanced at the kitchen clock. It wasn’t even noon, and already the day was a disaster.
Summer
July. Ninety-five degrees with the same humidity. By this
time every year, Kyle hated being a slave to corn. He
dreamed of taking a vacation—anywhere would do—as
long as he got to sleep late.
Still, he loved the fields, the corn moving through the cycle
from seed to maturity. It was like watching your children
thrive. He knew it was silly, but he felt proud.
Summer had brought good and bad news. The good news
was that despite Sarah’s winter prediction, it was going
to be a bumper crop. The bad news was that everybody in
Iowa was going to have an outstanding harvest. This was a
fact of farm life: if it was a bad yield, a farmer didn’t have
anything to sell, but when the crop was strong, it glutted the
market, forcing down prices.

There was good news and bad news in the family too. Sarah
got the job and her paycheck had been a godsend. Frankly,
Kyle had been amazed. With the economy bad, probably
every farmer’s wife was applying for work. But the bad
news was that by June, Sarah was out of the job and back
in the house. Kyle didn’t know if she had been fired or quit.
He was afraid to ask. Whatever the reason, she was back in
one of her depressed cycles.
From his seat in the combine, Kyle saw the heat shimmering in the far reaches of the fields. Even the birds had quit
for the day. He stopped the machine. If he squinted and
looked straight at the horizon, the unending fields of corn
looked like waves on the ocean.

Kyle basked in the warmth of her
words. It had been a long time since
they’d been this close.

“Where’s your mother?”
“Upstairs,” the boy answered. “She has a headache.”
Kyle turned the game back on. “All right. But like your
mother asked, keep it down.”
He walked upstairs. The bedroom door was open, and he
could see Sarah under the covers, a pillow over her head.
He quietly took off his shoes and work shirt, turned down
the covers and got in on his side of the bed. Sarah’s back
was to him.
He put his arm around her, nestled close and stroked her
neck. Her hair felt oily. He didn’t care. He kissed her. She
groaned. He couldn’t tell if it was from pain or pleasure.
“How you doing?” he asked. “Stephen says you have a
headache.”
She groaned again.
“You want me to get you a cold washcloth?”
“No,” she said. “Just stay.”

He remembered how he enjoyed real waves the two years
he served in the Navy. While many of his sea mates hated
the unending ocean, Kyle reveled in its freedom; water as
far as the eye could see, with no furrows or straight edges to
tether a person to the land.
He had wanted to reenlist, maybe make the Navy his career.
But his father injured himself and couldn’t farm. If Kyle
didn’t come home, the land would have to be sold. For an
Iowan, selling one’s land was akin to a mortal sin. Besides,
Sarah was pregnant with their first child. Kyle mustered out
and came back.

Kyle basked in the warmth of her words. It had been a long
time since they’d been this close.
“I’m sorry,” she said. “I haven’t been much of a mother.”
She hesitated. “Or a wife.”

She turned to face him, and he lightly kissed her forehead.
“It’s all right,” he whispered. “It’s been tough on all of us.”
He brushed the hair from her face. “Look, maybe what we
need is a vacation.”

He looked at the sky. The clouds were making angry
shadow faces. It was like this nearly every afternoon. Soon
a thunderstorm would cool things for a few welcoming minutes. Then the sun would come back out, turning the place
into a sauna again.

She opened her eyes. “What?”

He climbed down from the machine and walked back to the
house. In the living room, the children were playing a video
game, something involving car chases and super heroes.
They didn’t look up when he came into the room.

He switched off the game. “You know you’re not allowed to
play that until after supper.”

“Who cares?” he said. “Chicago, Minneapolis, Disney
World. Anyplace away from here.”

“A vacation,” he repeated. “The whole family.”
“Where would we go?”

She kissed his lips. Her breath tasted sour. “You’re wonderful,” she said, “but you know as well as I do that we can’t
do that.”
“Why?”

“Mom said it was all right as long as we were quiet,” Steven, the eldest, protested.

13

She smiled weakly. “Because of a little thing called the
farm. Who’s going to tend to it while we’re riding Space
Mountain?”
He thought for a moment. “Maybe I can find someone to
work the place for us.”
She shook her head and immediately grimaced in pain.
“Not likely. Besides, you know as well as I that we can’t
afford that.”
“I just want you to be happy,” he said.
She pulled him closer. “I know. But there’s nothing that you
can do. The problem is mine, not yours.”
“It’s ours,” he said. “We’re in this together.”
She didn’t answer. They lay together, arms around each
other.
“Do something for me,” she said.
“Name it.”
“Go downstairs and make supper for the kids. There’s
meatloaf in the freezer. Heat it up in the microwave.” She
began to cry. “Try to convince them that they have a normal
mother.”
She kissed him one more time and turned over. “I’ll try to
come down if this headache ever gets any better. Right now,
all I want to do is to sleep forever.”
He quietly got out of bed and went back downstairs. Despite it all, he felt better, happy that she was responding to
him and worrying about the children.
He was going to set a place for her at the table just in case.
Fall
Kyle loved the October air. It held the scent of football,
the echo of marching bands. He had played halfback in
high school, not first string, but not so badly that he only
got into the game when the team was twenty points behind
with a minute left to play. Now all he had to show for it was
an arthritic knee that throbbed every time the barometer
changed.

14

He tried to keep the combine straight. October was important. The daylight was lean but farmers needed to stay out
after dark, getting the corn in. The first frosts and hard rains
began in November. Today was two days before Halloween. He looked out at the windbreak trees at the edge of the
property. The last of the leaves were already beginning to
give up the ghost.
It was almost nightfall. Old farmers talked about spirits in
the fields. Kyle didn’t believe in those, but he wanted to
get finished with this quarter section and get back into the
house.
Since that summer day when they had laid in each other’s
arms, Sarah had been fighting her depression as best she
could. She was staying on her medication and had even
taken up yoga. But he was worried. Winter was always her
worst season and the sure signs were beginning to show:
irritability and sleeping during the day.
He circled the field and made a large arc toward the house.
He switched on the high beam. It was Sarah’s job to keep
the porch lights on so that he could follow them in like a
captain using a lighthouse to avoid running ashore. But often, she forgot.
Field swallows swooped around like dive bombers. Kyle
thought that they might be using him to find the safety of
the barn the same way he hoped to use the houselights. He
wondered if they would both be disappointed.
Tomorrow was Saturday. Kyle knew he couldn’t afford
the time off, but he’d take the kids to the local college for
a football game. The team was small time and so bad that
tickets were free.
They would go to the Dairy Queen and gorge on ice cream.
Maybe, just maybe, he could talk Sarah into going with
them.
As he came out of a far furrow, he saw spotlights on each
end of the porch. They looked to him like two low-hanging
stars in a cold, autumn sky.
Kyle let out a long breath. Maybe the crops prices would
hold. Maybe they could pay off their loans. Maybe Sarah
would come back to him.
Like his father always said, for a farmer, fall was best.t

POETRY

James B. Nicola

The Last Sponge Bath
These are
the soggy towels
she used, yesterday—
I used, for her.

I shall
wash them (tomorrow)
then give them away.
(Maybe later.)

Call for submissions

K

ALEIDOSCOPE
Gail Willmott, Editor-in-Chief

Kaleidoscope magazine has a creative focus that examines the experience of disability through literature and the fine arts. A
pioneer in the field of disability studies, this award-winning publication expresses the diversity of the disability experience from
a variety of perspectives including: individuals, families, friends, caregivers, educators and healthcare professionals, among
others. The material chosen for Kaleidoscope challenges and overcomes stereotypical, patronizing, and sentimental attitudes
about disability through nonfiction, fiction, poetry, and visual art. Although the content focuses on aspects related to disability,
writers with and without disabilities are welcome to submit their work.

· Double spaced, typewritten · 5,000 word maximum

· Electronic submissions preferred

Email submissions accepted at kaleidoscope@udsakron.org or online at kaleidoscopeonline.org.

15

PERSONAL ESSAY

A Walk Around the Corner
Nadia Ibrahim

“T

hank you . . . for everything . . . boy.” As I considered the plan to leave my service dog Tullis,
with Mom and Dad for good, the tears and sadness made it difficult to breathe.
One simple walk five months earlier in Georgetown now
meant that he would join my dad in retirement, making the
transition to family pet. I had no doubt that he would quickly adjust to life in Indiana. He loved spending time with
my dad, and his class clown, eager-to-please demeanor and
“Love Sponge” reputation had even won over my mom—
who was admittedly not a dog person. The bigger question
in my mind was how I would adapt to life in the D.C. area
without him.
Although I’d only had Tullis for six and a half years, it
seemed like a lifetime. God used him as a physical, emotional, and spiritual ice pick to dramatically chip away
at the frozen parts of my heart that came from the daily
challenges of living with a disability. I had come to rely
on Tullis for so much. Among other things, he was a conversation starter when my wheelchair and cerebral palsy
(CP) left acquaintances at a loss for words, and a listening
ear when others felt distant. Interacting with the 75-pound,
wet mouthed Lab-Golden Retriever mix reminded me that I
couldn’t control everything, that I could be myself, and that
—although my disability affected my ability to dress and
shower, transfer out of bed, or cook independently—it did
not define me.

16

Human assistance routinely came and went on a daily basis,
but Tullis never left or tired of helping out. Living life with
Tullis by my side meant not waiting for hours to retrieve a
dropped pen, cell phone, or glasses. It meant not working
twice as hard to prove to strangers and acquaintances that
my wheelchair did not affect my ability to speak or think. It
meant only taking one minute to open my apartment door,
rather than fifteen. It meant not having to worry about getting stuck in an elevator because the floor I needed was just
out of reach. It meant racing Tullis in the yard and forgetting—for just a few moments—about the 300-pound chair
that carried me.
“It’s okay . . . you can stay here with Mom and Dad. I’ll see
you again soon.” I caught my breath, and tried to convince
myself of the truth of my words.
I struggled to recall how I had managed for twenty-seven
years prior to getting Tullis. I would have to learn to manage without him once again. Retirement for Tullis meant
that my dad assumed the role of master. Tullis and I could
no longer interact as we once did. It would be too confusing for both of us. Now, my dad and mom would have an
assistant who could get the paper, carry items between the
garden and the house, and join them on evening walks.
In the back of mind, I knew it was best for Tullis and my
parents, but that did little to diminish the sadness and confusion. The entire situation tested my faith as a Christian: If
God is good and in control of everything, why is this even

happening? Why doesn’t He stop it? I had no problem
believing in God’s goodness intellectually, but my heart
struggled to grasp the same truth. To say that I believed God
was ultimately in control and had a loving purpose in Tullis’
retirement was one thing, but it was quite another to not let
regret, grief, and second thoughts privately consume me. I
understood that the grieving process would be a long, difficult one. My mind could so easily pull me down the path
of “what ifs.” What if we hadn’t taken that walk? What if
the trainers had come sooner to evaluate him? What if I had
responded with less emotion on that August day, would Tullis have responded differently as well? The reality was that
everything possible had been done. I had talked with the
trainers, consulted with friends, and prayed . . . and prayed
and prayed.
Although I couldn’t quite wrap my mind and heart around
Tullis’ retirement, I had to believe there was a bigger purpose in it. After all, God used Tullis, my first service dog
ever, to transform me from a quiet and shy adult to an
outspoken disability advocate. Whether I was overhearing
a conversation at CVS or reading a news article that addressed a disability issue, I found myself jumping in to correct misinformation: “No, he is actually not a guide dog. I
am not blind. He’s a service dog, meaning that he helps me
pick up things off the floor, open doors, push elevator buttons, and get help when I need it.”
Friends and family noticed other differences in me as well.
Clearer speech. Better breathing. More patience. All of it
was a huge change from our early days as a team.

*

*

*

“Okay, tell your dog to “sit,” Katrina directed the group of
potential service dog recipients from the center of the circle.
I took a deep breath, drew back my shoulders, lifted my
head, forced the words from my diaphragm—and tried to
remember to pull back on the leash. For anyone else, the
action would’ve been effortless, but my central nervous system worked overtime with each instruction. Although my
brain sent messages to my muscles, they rarely responded
with the agility and speed that I hoped for.
“Tullis, sit.”

To my surprise, he did. In seconds. It was the first time in
three days that a potential dog responded to my verbal command and minor physical prompt. My right arm, which was
normally tense, relaxed enough for my hand to drop to my
side. He licked it. This small gesture confirmed that Tully
and I were destined to be a team.
The long, winding path leading to Tully hinted that God had
far more in store for me than greater physical independence.
Although the Lord had brought to mind Canine Companions for Independence (CCI) regularly, I hated the idea of
spending two to four years on the waiting list for a dog. In
my impatience, I had wasted nearly two years and $600
with organizations that never delivered on their promises of
a dog. In the end, CCI seemed like the most viable option.
Fifteen months after reluctantly filling out the seven-page
application and making a trip to Delaware, Ohio, for an
interview, I received a phone call inviting me to the August
1998 Team Training.
Three days into class we were permitted to take our respective companions back to our hotel rooms to bond. The trainers provided strict instructions not to spend the entire evening practicing the commands we had learned. I couldn’t
help myself. I wanted to see how Tullis would respond. I
was devastated when “get” netted a blank stare rather than
the requested item. Each night I attempted a different command with him, and each night I came away discouraged.
He responded so well in class, but in the hotel room he
seemed apathetic.
Nearly a week and a half later, as we prepared to leave
Team Training, I had a heart-to-heart talk with the trainers
about Tullis’ work ethic: I expected him to respond immediately, with a wagging tail each time I gave a command.
Since he clearly didn’t meet this self-imposed standard, I
concluded that he was uninterested in working. I assumed
that I would return home without a dog. The trainers politely chuckled and dismissed the idea.
“Nadia, our homework assignment for you, as you prepare
to leave is to…” explained Katrina, with a huge smile, “go
home, and have fun with your dog.”
In light of my perfectionist tendencies, this simple assignment proved immensely challenging. Time alone with a
semi-responsive dog—given my physical limitations—
17

drove me to tears and prayer in equal measure. God, I can’t
do this. Please help me be patient with Tullis, and give him
the desire to obey! I’m convinced that Tullis was the most
prayed for dog on the planet. We spent countless hours
practicing commands, playing fetch, and taking walks. Even
though our bond grew and his responsiveness improved
steadily, we still had difficultly reading each other.
A turning point came one day. Tullis laid on the bed, wagging his tail, as I fired off multiple commands to have him
hand me the leash. I tried adjusting my posture, taking a
deep breath, and forcing air from the pit of my stomach.
Still, Tullis stared at me with glazed eyes. I couldn’t help
but laugh, as I almost heard him saying, Do you realize
what a fool you’re making of yourself? Lighten up. It’s not
that serious.

Tullis opened up more
opportunities to direct others to
speak to me rather than through
friends and family to me.

Over time, games of fetch and early morning cuddle times
revealed a soft, joyful, sensitive, and funny dog. Any sign
of tears from me inevitably led Tullis to do a lap and lick
my face until he was certain I was okay. He would visit
with anyone in need by putting his head on their lap. He
responded quickly and easily to my commands regardless
of the time or place: busy train station, stress-filled office,
Alzheimer’s Unit at a local hospital, or college cafeteria. A
simple carrot elicited a dance, which included him tossing
the carrot in the air then rolling on it. Fear caused by others’
expectations or thoughts of me melted away as I simply enjoyed my time with Tullis.
Regular encounters with interested strangers often required
drawing a clear distinction between appropriate and inappropriate times to pet Tullis. Release, which told him it was
okay to be a regular dog and enjoy some attention, resulted
in a noticeable change in his behavior. He loved to spend
even a few minutes off-duty, as demonstrated by his swinging tail and wiggling back end.
Sly passersby often tried to sneak a pet of Tullis, assuming
that I wouldn’t see or say anything. But my direct, unapologetic response frequently caught perpetrators off guard:
“Please don’t pet the dog. He’s working.” Sometimes my
friends and family thought I was too curt in my response.
“You wouldn’t go to a complete stranger’s child and begin
18

playing with him/her without interacting with the parent,
would you?” I reasoned. They understood.
Tullis opened up more opportunities to direct others to
speak to me rather than through friends and family to me.
Questions like “What does the dog do for her?” or “How
much training has the dog received?” yielded the same response from whoever accompanied me: “You’ll have to ask
her . . . . It’s her dog.”
And, the fact that I could have him pick up my keys, or my
cell phone with one or two commands often overshadowed
my physical limitations: “I can barely get my own dog to do
that. Can I send him to you?” unsolicited onlookers would
ask. It was as if, because Tullis didn’t treat me as anything
less than his friend, handler, and constant companion, my
disability disappeared when I interacted with others. It was
no longer an issue of what I couldn’t do, but rather what
was possible with Tullis’ help.

*

*

*

In the winter of 2002, I moved to Washington, D.C. By the
time my mom visited in the fall of 2004, we had seen most
of the touristy sites, including the Lincoln Memorial, the
Smithsonian museums, the Kennedy Center, and Eastern
Market. Georgetown was the only missing piece.
I loved what Georgetown embodied in my mind: an elegant
opportunity to travel back in time, with the colonial buildings, chic stores, and brick sidewalks. However, the reality
differed sharply. Narrow sidewalks, dilapidated ramps and
meaningless steps into the quaint little shops often meant
my shopping urge went unsatisfied; however, I figured the
twenty-minute walk would be good for Tullis.
The first block in Georgetown hinted at a navigational
minefield of missing concrete, alternative pathways, and
tightrope-like sidewalks. Construction signs, wooden
planks, and bright orange cones peppered the right-hand
side of the street, so we steered clear of them. We were so
busy catching up on hometown neighborhood gossip and
my latest work-related drama that I didn’t hear the background noise: a deep thunk, clank of my 300-pound wheelchair running over a manhole cover and the swwiishh of
passing cars on the rain-soaked streets.
The sounds triggered something in Tullis, though. Instantly,
he went from walking calmly beside me, to straining at the
end of the leash. He was transformed from a faithful companion who patiently waited for my every command into a
soldier on high alert in the midst of enemy fire: scanning the
area, looking for any means of escape.

No commands regained his attention—not sit, lap, or even
visit. His paralyzed eyes made it clear that although he
could hear me, fear had captured him, making it impossible
for him to respond. It was as if burning coal was under the
sidewalk, and he would’ve done anything to get away from
the heat. Had a metal ring not secured his leash to my chair,
with my hand and fingers tightly grasping the thick yellow
and blue lead as a back-up, he would’ve run into the street.
“Mom, what’s wrong with him?!” I asked, panicked by his
erratic behavior. The sound of my heartbeat silenced the
conversations of passersby. I wished my mom could clearly
explain what was happening and reassure me. Instead, there
was stillness and silence. She was equally stunned.

Dogs chosen for service work
would often recover quickly from
startling events. But he remained
fearful and inconsolable even an
hour after the incident.
Without too much thought, I began to provide instructions,
based on what I had learned in Team Training. “Check his
paws . . . Did he step on glass? Did I run over his paw? Is it
okay? Is there any blood? What about the sidewalk? Check
it. The manhole cover: is it hot?” The barrage of commands
and questions left her little opportunity for a response.
After assessing the situation, she said with concern and bewilderment in her voice “No, Nadia, everything is fine. His
paws are okay. There’s no glass and no blood. The sidewalk
and manhole cover are both cool . . .?”
Suddenly, I became aware of a sea of people walking by
and became anxious to get Tullis out of the crowd. My first
thought was to take him into a store. The only problem was,
the closest shop was not accessible to my wheelchair. Maybe we could just sit outside for a few minutes, giving him a
chance to re-group? I thought. Tullis and I spent 24/7 together. No one knew him better, and no one knew me better.
I wanted to be close by. I wanted to be the one to comfort
him, to stroke his ears and reassure him that the sidewalk
was safe. “This is no time for selfish decisions.” I corrected
myself. “Hand the leash over!” I could hardly bear the
sight of Mom and Tullis walking inside the store without
me. I had to go down the street a little further.

My mind focused on replaying the last few minutes, over
and over and over. I searched for any clues that might explain what happened. Was he having a seizure? Could he
possibly have a brain tumor? Was there any odd behavior
earlier in the day or even in the last week? Nothing. God,
please let him be okay.
As I made my way back to the store, my mom came down
the steps, still working to keep him walking in a straight
line. It was so unlike him. Leading him typically took very
little effort or strength, making him the perfect dog for me.
Something was definitely wrong. My heart dropped to my
stomach and stayed there.
We made our way home in silence. Although we didn’t understand exactly what had taken place, the situation clearly
did not have a quick fix. Dogs chosen for service work
would often recover quickly from startling events. But he
remained fearful and inconsolable even an hour after the
incident.
Mom and I wasted no time in contacting my dad, once we
arrived back at my place. As a fellow dog lover, he had a
way with animals. Perhaps he could help make sense of
the last hour and a half. I was so preoccupied with observing Tullis’ every move that all I could do was listen as my
Mom explained what had taken place. In the midst of Arabic phrases, a few English words crept in. Tullis. Sidewalk.
Afraid. Then, she was silent. I was hopeful. That typically
meant one thing: my dad was offering his perspective and
potentially had helpful information.
“Nadia, Dad says that he just read a couple of days ago
about a dog in New York that was shocked after walking
over an electrically charged manhole cover,” she relayed,
still holding the phone to her ear. “It’s possible that because
of the construction in Georgetown there are exposed wires.
Dad says humans don’t feel the electric current, because
their feet are protected.”
We called the lead trainer at CCI’s Northeast Regional
Training, who confirmed that this was highly likely, given
the details of the incident. An electrically charged manhole
cover shocked Tullis. This incident led to fear for both
Tullis and me on other sidewalks—and ultimately on the
Metro. I avoided certain construction areas and tried to use
food to keep his attention. No food—not even carrots—motivated him to stay in place once the train doors opened. I
worked with other CCI volunteers and even contacted the
graduate coordinator at CCI.

19

One cold, rainy November afternoon in 2004, Laura Ann,
a CCI trainer, flew down from New York to see if anything
more could be done to help Tullis. We met at the Vienna
Metro station to avoid crowds of people. Within one minute of the train doors closing, she simply said, “I’m sorry
there’s nothing we can do. He has been too traumatized by
what happened in Georgetown.”
She didn’t have to say much more. I knew she was referring
to his retirement. I got off the train, found a corner in the
Metro and sobbed. I made plans to return to Indiana in January, along with the decision not to pursue getting another
dog immediately. Even the thought of a successor dog made
me feel like I was betraying Tullis.
*

*

*

Back in West Lafayette, Indiana, I heard my dad near the
front door, putting on his jacket and winter boots. He turned
the knob and tried to go outside without waking anyone.
Tullis loved to join my dad on walks to the mailbox to get
the morning paper, but he knew that he had to ask permission to go without me.
He jumped off the bed, sat like a soldier reporting for duty,
and perked his ears waiting for the commands. Without me
saying a word, he adjusted his position so his feet were directly under him. He knew I wouldn’t settle for just any sit
before allowing him to go outside. Little did he know that
these would be the last commands I would give him as my
dog, I took a deep breath and softly smiled, “Great job, Tullis . . . . Release. Go to Dad.”t

Glenda Barrett

At Arm’s Reach
In the hospital
after my father’s disease
was diagnosed, I walked
over to give him a hug.
He gently pushed me back.
Later at home,
I remember the first time
he fell. Momma rushed
to his side to help him up.
He refused.
I grieved both the diagnosis
and the feeling of rejection.
All I could know was my feelings.
A reserved man, my father
didn’t always share his thoughts.
Life has taught me well.
In hindsight after my diagnosis,
I came to a clearer understanding.
I found myself saying, I’ve got it.
I’ll handle it.
Like my father before me,
a strong, independent person,
I couldn’t seem to help my behavior.
My greatest need was to hold tight
to what control I had left.

20

POETRY

Gail Eisenhart

Claire de Lune Reprise
My mother’s mind slides
beyond the horizon with the sun and I disappear
from her memory. The day is long;
by now my patience is short.
Frustrated, I prepare to leave the nursing home
and pass through the lobby where a weary aide drops
to the piano bench. Frustration flows
from her fingertips as she trips over
ebony and ivory.
Ghosts of a long-deceased Steinway awaken
as sharps and flats race to a crescendo.
Debussy’s music ebbs and flows, drowning my angst.
As the aide stumbles through Mom’s favorite melody,
the love notes tease my lips to smile.
I return to mother’s room.
The full moon splashes her coverlet. I bend,
smooth a silver curl, tuck her in.
She stares past me at shadows on the wall.
I kiss her cheek,
lend her my dreams.

21

PERSONAL ESSAY

Changing Faces
Julie Guirgis

W

hen Dad was first diagnosed
with dementia I shrugged it
off as mild. I only associated
dementia with forgetfulness, which I
naively assumed was part of the aging
process. He did display some oddities
and ask repetitious questions but nothing serious enough to cause concern.
I had no idea nor was I prepared for
seeing the man I loved deteriorate
before me. Not only did it change his
personality, the essence of who he was,
it changed me into a person that I no
longer liked. Daily screaming matches
between us were not uncommon. Dad
was always a loud extrovert, yet the
dementia had somehow increased his
decibels to maximum. My vocal range
had also advanced. Shouting had replaced talking, fuelled by impatience,
anxiety and frustration on both sides.
One day in my room, like bullets from
a gun, he fired questions at me. Sitting
on the edge of the bed, I felt like I was
also on the edge of my tether. I let out
an unfamiliar scream before I burst into
tears. The constant vigilance, broken
sleep, despair, and frustration had taken
their toll. I had to deal with the constant

22

arguing, pleading, guiding, and daily
grind, all while ignoring the knot in my
stomach. No matter how hard I’d try
to keep my cool, there was a point at
which I’d crack, despite always being
told to think positively and concentrate
on good thoughts.
Then the belief that someone was trying to kill or harm his family began.
He became overprotective to the point
of paranoia, insisting that we close all
doors. He even mistook the refrigerator door as a point of entry for these
imaginary perpetrators. No matter how
much we tried to convince and reason
with him, he vehemently believed these
delusions. He also believed that home
was elsewhere. A solution to this problem was to take him for a drive, telling
him that he was “going home” then
bring him back home. Dad never knew
the difference.
The constant yelling and impatience
of my father filled me with dread every time I took him to the doctor. We
would usually be escorted to another
waiting room away from other patients
for fear that they would be irritated by
his yelling. One time he was especially
agitated, because of the long wait or the
large number of people. He flared up

more than usual, insisting that we go
home right away. Without giving me
the chance to pay for the appointment,
he grabbed me from behind. I froze,
feeling heat rise into my cheeks and
forehead. A captive audience fixed their
eyes on me with what felt like judgment, rather than compassion. I wanted
to scream at the top of my lungs, but
kept my decorum, dying a little inside.
I was aware if I lost it, Dad would too.
I quickly paid the bill, leaving a trail of
stares and whispers behind me.
Another time when I was coming
home from work, my instincts told me
there was something wrong as soon
as I stepped foot on the driveway. The
front door was wide open and no one
was in the house. My heart was beating rapidly. In panic I rushed out to the
granny flat hoping someone was home.
Relieved, I saw Mum was there watching TV, oblivious that Dad had disappeared. She said he wasn’t calling out
as usual and assumed he was asleep.
“Where were you?” I asked accusingly.
My emotions were running high, filled
with anger and fear. Scared does not
even begin to describe how I felt inside.
Fear quickly turned to pain. I was cry-

ing so hard that my throat burned with
pain and my stomach churned.
Crazy thoughts started to run through
my mind like, Has he wandered into a
stranger’s house? Has he hopped on a
train? or worse still, Is he dead on the
side of the road? The fear consumed
me as I thought of worst case scenarios.
Finally, after what felt like the longest
hour, a car pulled into the driveway.
A big strong man and his elderly frail
father got out of the car. Dad was in the
backseat. They had seen dad wandering the streets, calling out for Mum.
They lived close by and knew where
we lived. I called them angels, while
embracing Dad tightly.
Watching Dad casually walk straight
into the house as if nothing happened
made me realize how far the dementia
had progressed. This was the first time
Dad had done this. He was feeling
lonely and frightened, trying to find
Mum. As soon as he was out the front

door his memory loss impacted his
ability to navigate and recognize where
he was. This insidious disease had
caused him to revert to being a child.
I felt like a mother who had lost her
child. But this time it was my dad.
Dad just wasn’t there anymore, not in
the way I wanted him to be. I searched
for my father’s familiar face, but even
that had changed. His eyes that once
shone brightly were glazed with confusion and fear. I barely saw a glimpse
of him. I couldn’t look at Dad without
seeing a fading picture of who he used
to be and couldn’t help but speak of
him in the past tense. I grieved for the
man I knew and loved before dementia.
Like a jigsaw puzzle, dementia had stolen random pieces, one at a time. The
picture had changed as the dementia
progressed, but I developed the ability
to cherish every possible connection
with the pieces that remained. I focused
on this new person in front of me, even
though in many ways he was a stranger.

Dementia can be a spiteful and cruel
disease, traveling with its hideous
companions delusions, aggression,
agitation, and selfishness, coupled with
constant demands. It is an impostor
trying to steal Dad away, trying to cast
shadows between us. When I am feeling strong, I can push it out of the way
to find remnants of my dad. But other
days I succumb to its menacing power.
In these moments I could gladly have
handed Dad over to someone else. Even
for a few hours.
I never envisaged I would be my father’s caregiver at the age of thirty-two.
I guess life isn’t always predictable.
Nevertheless I’ve had to take over the
reins, even when they were shaking
in my hands. Despite the sadness and
difficulties that go with dementia, I understand its paradox. I’m able to experience all the different parts of him; the
vulnerable side, the childlike side and
the fighter in him. I have learned to go
into his world instead of expecting him
to come into mine.t

23

POETRY

James B. Nicola

December
Briefer days approaching briefest now:
December, and she’s back in hospital.
Will the darkness incubate the germ
Will snow and ice seal in this ebbing mind
Will light return and once again restore
Such blinking embers, that another season
Of rain and warming bring April and May—
Or is she on her Road, going away?
Besot thus, I must be the little church
Of stone, resilient, in a country quiet,
Faithful, aspiring, safe when my door is closed
But open to all as often as possible—
Fresh air, visitors, futures, singing choirs,
And the hooded sickled uninvited guest—
So that when her grave is sunk to plenish the yard
With stardust, the very mineral of light,
Her stone shall rise therefrom and glisten—after
Night, at dawn, and after storms, in calm—
Of dates, a phrase, and remembrance to adjust
My aspect, barely noticeable, but
There—here—for the rest of my devoted days.
And whenever the spring to follow this
May come—now, next year, or a time beyond—
I shall perceive in every leaf and flower
A tinge of joy in having been fed, in part
Or whole, improbably but definitely,
By her, as stardust burst to sight the stars
With the gentle colors of a silent song.

24

James B. Nicola

Winter Rose
My mother reemerges as a single
rosebud breaching through a bed of rocks
in late December. If you’ve never seen
a winter rose, just come and meet my mom.
Yellow? Pink? Red? White? Violet!—all of these
she’s loved, or been, season after season:
becoming whiter now, but still there’s blood.
Her cheek—touch!—boasts the velvet spring of petals.
Time now beats like the buffets of the wind:
the seconds sweep; hours blow; while days, weeks, months,
years, lives—eddy beyond her bed. But love,
the richest soil, keeps her fed yet, and moored.
A kiss restores the color to her bloom.
If this rose can grow tall or bright enough
that some passing divinity might see
and stoop, he’ll lend her wings that she should rise,
an angel, and get the heaven out of here—
or sprinkle another year of sanity
and strength, that she sprout legs, and walk again.

25

FICTION

For the Love of Rudy
Debbi Simmons Harris

C

arrie rose slowly from the thick
wooden chair that barely supported the heft of her large bottom. Her knees creaked in the process,
and little breaths exploded quietly
from the tense line of her lips as she
struggled not to release a full-out grunt.
A creamy, surprisingly slender hand
emerged from the tunnel of her dark
woolen sweater to grab a smooth aluminum cane perched tenuously against
the restaurant wall. Carrie’s blue eyes
darted about the room, and, as expected, she took in an array of faces
dedicated to the spectacle of her getting
up from a chair. She pushed her dinner
plate toward the center of the table, disgusted at its lack of promise now—the
once-sumptuous bits of buttered shrimp
nibbled down to their crunchy tails; the
leftover fries, limp and cold, abandoned
in thick lumps of ketchup.
“We go-oo now?” An eager voice arose
from the height of Carrie’s chair, to
which she clung as she stood, shaking
the blood back down to her puffy, bare
ankles. Recoiling a bit at the mess of
crumbs and milk that had made their
way to the floor, Carrie finally drew her
focus to her son Rudy, who bounced

26

excitedly in his candy-purple wheelchair, his tiny, crooked finger poised
atop the “ON” button. Rudy’s pointy
chin—red and rough from drool—
bobbed anxiously toward the joystick.
“Yes, we’re going. Get yourself in
gear,” she’d heard herself say, still
painfully conscious of the roomful
of eyes focused on her bottom. Carrie shifted a hip toward Rudy as he
grabbed the joystick and began to scoot
backward. She slapped a five onto the
table for the waitress, and then peeled
it up from a glob of spilt tartar sauce
as she reflected on the woman’s brazen
nature. She stuffed it back into her
purse.

*

*

*

“So, jes’ the two of yas?” The woman
had smacked on a wad of gum as she
grabbed a pen from behind her ear,
tugging a little as it snagged against an
inconvenient piercing. Rudy looked up,
gleeful as always, and answered for his
mother.
“Daa-aad’s home. Daa-aad doessss not
want to come!” The boy’s words were
slow but deliberate, and Carrie beamed

inside. The doctors had said he’d never
talk. The waitress repositioned her pen,
gave her gum another enthusiastic pop,
and turned sharply toward Carrie.
“So, what’s wrong with the kid?” she
asked, shoving her head Rudy’s way
without looking at him.
Carrie’s heart fell to her stomach as she
watched Rudy’s cheeky smile fade to
sadness. The boy pushed forward his
tiny chest and parted his lips to protest,
but then sunk back into the security of
his Neoprene seat, defeated by a shortage of words.
“I’ll have the seafood platter with fries.
Make sure they’re crispy. Rudy will
have fries and applesauce. He’ll take
a toddler cup of milk with a straw, and
I’ll have a large Diet Coke. We’ll take
extra biscuits,” Carrie said, as abruptly
as she could muster, “and . . . there’s
nothing wrong with the kid.” Carrie
shoved the menus toward the waitress’
dirty apron. The woman huffed and
turned on the heels of her black rubbery
clogs, pausing only as long as it took to
even the score.
“Ha. You sure ain’t puttin’ back no pork

chops, are ya, missy?” At that, she gave
Carrie a quick squeeze on her chubby
shoulder and walked away.

*

*

*

Carrie’s bites at dinner were interrupted
by jagged bits of conversation with
Rudy about why Daddy didn’t come;
spoonfuls of applesauce, which he alternately savored and choked on as she
fed him; and, searing pangs of loneliness, which she too often mistook for
hunger.
Rudy’s left arm was a mass of contracted muscles, useless to him. He could
extend his right arm just enough to
reach the adaptive switch to power his
chair, wrapping his two functional fingers around the shiny bar that gave him
the only independence he knew. Otherwise, Carrie diapered the thirteen-yearold; she repositioned his rumpled body
every two hours to keep his smooth
veil of skin from breaking down; she
dedicated herself to his passive range of
motion exercises three times a day. She
made fun out of laborious bed baths;
metered essential doses of seizure
medicine and muscle relaxers to ease
the pain of Rudy’s spasticity; and lifted
him from bed to chair, from chair to
bed. Rudy’s swallow reflex was being
refined by weekly speech therapy sessions. Still, the boy couldn’t eat nearly
enough to thrive, though he relished
sucking the salt off his very own fries,
blowing bubbles into the straw leaning

in his cup of warming milk, and nibbling the biscuit that Carrie tenderly
crumbled on the placemat in front of
him. Soon tired, Rudy would sit back
and sigh, like a king after a bountiful
feast.
Robotically, his mother would then
discreetly pull the feeding tube from
beneath his shirt and hook it to the bag
of Pediasure hanging from the batterypowered pump attached to his chair that
eked out the boy’s sustenance in slow,
measured drops. Carrie still cringed a
little at the high-pitched tone that shot
from the device as she powered it up.
She’d survey the restaurant again to see
who might be looking at this, another
spectacle, and then return to the comfort of her plate.
“Go-oo ssseee Daaa-d!”
Rudy’s squeaky plea jerked Carrie back
into the present. The boy was always
much more excited than she to return
home after an adventure to witness her
husband positioned in front of the flatscreen, his hairy arm outstretched with
the remote pointed expertly at the cable
box, as though there might be some
emergency for which the remedy would
be to quickly change the channel. He
abhorred outings like these—so precious to Rudy, who sought to explore
the whole world.
Carrie conjured up what the conversation might be when they would arrive at
home. You don’t need to be in a restaurant, you need to be on a diet. You’re
a cow. This was her husband’s mantra.
He repeated it with religious fervor,
usually reclined and balancing an
O’Doul’s and a sloppy cheeseburger on

his growing belly. And nobody wants
to see some retarded kid eat in public,
for cryin’ out loud. The cruelty of his
words, the shock of the labels, his everpresent absence, made something rise
up in Carrie. Something acidic, putrid,
and fiery—worse than the heartburn
that plagued her at night.
Carrie had to keep moving. She had to
keep herself and Rudy from succumbing to the imperious ignorance and
meanness that sought to define them.
Minimize them. Bury them.

*

*

*

“C’mon, Mmmaaa. Come-come on!”
Carrie wrestled fully back into her linty
sweater and secured Rudy’s favorite
earflap hat beneath his chin with a soft
bow, wiping away a line of drool before
it flowed into the crook of his neck.
She hoisted her cane up and set it down
horizontally, just beneath the handle
of the boy’s wheelchair. Begrudgingly,
Carrie returned the five-dollar tip to its
place on the table.
“Let’s play a game, Rudy,” she said.
“You give Mama a ride behind your
chair.”
Carrie leaned in then, pumping out a
big sigh as she rested the bulk of her
weight on Rudy’s power chair and let
the happy boy steer the two of them
awkwardly toward the door.t

27

PERSONAL ESSAY

The OCD Ties that Bind
Simon Hardy Butler

I

can’t think of anything less romantic than obsessivecompulsive disorder.

Yet I have it, and it’s played a huge part in my relationships—for better or (mostly) worse. I often wonder how I
even got married. Why my wife, Trudi, loves me. But that’s
my OCD second-guessing. I always lose when I debate
myself.
When I met Trudi, I sure felt like a winner. My divorce was
in the final stages, and I was now living solo after a halfdecade of marriage. Loneliness and a feeling of failure informed me. JDate, however, beckoned. Soon enough, I was
on board with the Jewish singles site, trying, like everyone,
to connect with a real catch.
Fate—or, more likely, the cursor—led me to Trudi.
We shared a common interest in not wanting to be run over
by the rapid stream of strollers careening down Manhattan’s
sidewalks. We were really into movies and animals as well
as other shared interests. Her personality was chipper, sarcastic. It bolstered mine.
So we set up a date. Met in front of Zabar’s, of course,
only a few blocks from my childhood home on West End
Avenue, where my parents still live. Then we headed to Edgar’s, a “desserty,” Poe-inspired café that, at the time, was
nestled off Broadway on 84th. Trudi ordered a salad. I, a
sandwich. After conversing, we learned an important thing.
28

Both of us were unemployed.
It wasn’t a charming fact, but it was there, and I wasn’t
alone. An editor by trade, I was laid off from my previous
job while my divorce was gaining traction. Coupled with
my yet undiagnosed OCD symptoms, the lack of work and
love made my days completely dreary. That Trudi was going through a similar situation was heartening. We bonded
over our missteps, drank to them. And arranged for a second date.
Improv. Dinner at Film Center Cafe. Our first kiss. What a
smooth process, and I was enjoying it. Plus, I forgot about
my need to check my wallet multiple times to make sure
everything remained there, or my desire to read everything
twice (or more) for certainty. Relaxation took me on its trip.
And led me to ride home on the subway with her to Washington Heights, where we made preparations for our third
meeting.
It went so well that I asked Trudi to move in with me at my
apartment in Forest Hills. “I’d love that,” she said. Now my
OCD couldn’t be hidden.
Not that I was doing it deliberately; I wasn’t cloaking my
condition. Yet I always felt dishonest about not telling her
what I was going through. How I couldn’t process words
and had to envision each full sentence, like a photograph,
in my mind before reading on. How I washed my hands
compulsively, a Jewish guilt-laden Lady Macbeth, and had
to stare at the faucet for a minute to make sure no droplets
fell after I turned it off. How I became flustered if I saw any

crumb on the carpet or kitchen floor and sprayed the spot
obsessively with Fantastik after picking it up.
And how I counted in my mind while performing almost
every simple daily activity, which I couldn’t complete—and
often had to do over—until I reached a solid-feeling, arbitrary number.
At first, Trudi didn’t understand what I was dealing with
and became frustrated. We had our share of tiffs and spats.
But she researched my behaviors and found out more about
them.
“You should continue with therapy,” she said.
I did. And there, a short time later, I was finally diagnosed
with OCD.
Well, it gave me a bit of clarity and a label in which to envelop my issues. Yet it was hardly a comfort. I couldn’t do
normal things like everyone else. I couldn’t tie my shoes
without washing my hands. Now I had this stamp, and I was
officially on the outside. There was no way people would
respect me if I told them about my diagnosis.
Trudi, however, did, and worked with me on developing
strategies. We found jobs and resumed careers. Then we
got married, in a quiet ceremony at her sister’s Park Slope
brownstone. Friends were there, treating me as they always
had. Family congratulated us. I missed the glass initially
when the rabbi told me to step on it, but I tried a second
time and succeeded in breaking it. In that instance, OCD
came in handy.
It didn’t disappear, though, and remained prevalent throughout our days—even latching on to me as I fulfilled a lifelong dream: getting a writing job at Zagat. (A childhood
spent reading restaurant reviews while growing up in the
same neighborhood as Zabar’s and going on family vacations to Europe gave me a lifelong love of food and the
ways to assess it.) Washing my hands, checking for grime,
counting obsessively and reading words multiple times…I
still did all of these things despite being happy. Why?

It’s been hard to find a reason. Part of it may be hereditary,
both my parents experience anxiety. I’ve also lost two dear
friends—one who committed suicide, and one who had
amyotrophic lateral sclerosis (ALS)—and I believe their
losses have affected me too. Trudi has also suggested that I
pressure myself to make things perfect when I only need to
do them well. The problem is, perfect, to me, is correct. And
the world isn’t really like that.
A trip to Las Vegas made that clear. It was our first vacation
together, and my OCD, like Frankenstein’s monster, threatened to ruin my happiest moments. I checked my shoes
frequently for you-know-what while strolling the Strip with
Trudi. I triple- and quadruple-checked tips in restaurants,
making me dread the ends of meals. And the handwashing
was predominant, to the point where I’d need an aquatic
fix if I touched anything that didn’t smack of immaculate
hygiene. Including Trudi, who’s about as hygienic as they
come.
I understood it wasn’t rational, and I wondered if I was
insane. There were so many things that I didn’t do right;
why did everyone except me have to be perfect? The trip
ended: the question remained unanswered. I went home still
packed up in an OCD suitcase. I haven’t opened it yet.
There may be similarities when it comes to defining this ailment, but in practice, it seems like a personal condition. I’m
not exactly neat, like the famously obsessive Monk on TV. I
don’t keep things in order. But I have patterns that I follow,
and breaking them results in anxiety. If I leave the apartment without being satisfied that the faucet is completely
off, I worry. Is it off? Perhaps it went on again and will
cause a flood. Maybe I didn’t tighten it enough.
Yes, I do feel like an idiot. Fortunately, Trudi doesn’t consider me one.
Tolerant and sagacious, she understands my anguish,
though not necessarily the actions that augment it. Her treatment is love, and to her, I resemble a child requiring care.
That came up in our discussions about the future, during
which I told her of my fears of being a parent—that I’d be
overly anxious about, say, whether our kid was breathing in
the crib or how many times per hour I should check to make
sure. In editing, OCD, with its reviewing and re-reviewing,
can be a boon. In parenting . . . eh.
29

So that conversation’s still up in the air. What isn’t, however, is my recognition that I’m not the craziest guy in
town. During the recent Passover holiday, which we divided
between my family and Trudi’s, the question arose at her
sister Ruth’s house if everyone, as part of the Seder ritual,
had washed their hands.

And if I didn’t have OCD, I probably wouldn’t have met
Trudi.

“Very much,” I said. Ruth’s husband Bob, who was sitting
next to me, smiled. Judging was part of the Pesach story,
but it wasn’t going to be practiced at the table.

It’s funny now. Needy. That’s a euphemism.

I still have OCD. I still reread sentences, still wash my
hands, still count numbers in my head. And I still adore
Trudi, her family and my own, all of whom have continued
to embrace me despite my condition. Not that I’ve given up
on finding mitigating strategies; I’m doing that constantly—
from mindset to medicine. So far, it hasn’t gone away. It’s
part of my chemistry, and to a certain extent, inextricable,
like Schubert’s Doppelgänger, yet not loveless, as I thought
I’d be after my divorce, or even useless, as it often informs
my work.

30

She reminded me some days ago how, when we were setting up our first date, I asked multiple times where we were
to meet. “I thought you were needy,” she said, chuckling.

But if I hadn’t asked all those times, where would I have
ended up?
Maybe back on West End Avenue. Trudi clarifies why she
stays with me, despite all my mishigas: “I love you,” she
says winsomely.
OCD may not be romantic, but it isn’t a deal-breaker. And I
wouldn’t do my life over again for anything.t

POETRY

Glenda Barrett

No More Comfort Please
You see the braces
and then the scooter,
Sometimes you turn your head
and see neither one.
I’m not easily fooled,
I see it in the eyes,
Sometimes curiosity,
other times pity.
The well-meaning ones
want to do for me,
but they forget to ask
what I might need.
Some feel I need their expertise
so they bombard me
with all sorts of advice
and quick remedies.
Others fear for my spiritual life
and say, “Where is your faith?”
without ever knowing the pain
I’ve faced in the midnight hours.
Some visit for hours
and share their problems,
never seeing the exhaustion
around my own eyes.
The ones I like best say,
“How are you?”
and listen closely
as I really tell them.
They sit quietly
and give me the main thing
that I ever really need,
to be heard.

31

FEATURED ART

Turning Obsession into Art
Sandy Palmer

Grant Manier, Sun God, 2010, Eco-art, 18” x 24”

“I create recycled art because of my out-of-sync behaviors
and obsession for paper.”
~ Grant Manier

A

t the age of three, Grant Manier (pronounced
Maun-yay) was an adorable little boy who had superior motor skills and was very verbal, but he was
also displaying signs of autism with his extreme anxieties
and obsessions: tearing paper, lining up toys, and echolalia
(mechanically repeating words from TV shows). By age
four, his parents divorced and as a single mom caring for a
child with idiosyncrasies, Julie Manier had some difficulty
finding a job and babysitters. Having worked with people
32

who have severe autism in the past, she was eventually
hired as a teacher’s aide at a school for children with autism. She says, “I started working at the school and I was
around all these children with high-functioning autism and I
thought, Oh my gosh, this is Grant.” She had never heard of
Asperger’s (high-functioning autism) before. Her son was
officially diagnosed with autism when he was six years old.
She enrolled him in the school where she worked and he
continued there through second grade. He began third grade
in public school and the first year seemed okay. However,
the second year was a challenge because he was bullied,
which increased his anxiety, and the school kept calling

Grant Manier, Jester of Mardi Gras, 2011, Eco-art, 24” x 36”

Mom asking for help in handling his autism and subsequent
meltdowns. She decided to pull him out of public school
in the middle of his fifth grade year and she began homeschooling him while she was also tutoring other children
with disabilities in her home. Manier’s obsession for paper
was disruptive in the school’s classroom, but when she
began tutoring him at home she says, “I couldn’t stop him
from doing it because it made him happy, so I redirected
him.” She added art to his homeschool curriculum and
channeled his desire to tear paper into something constructive and, ultimately, magical. Manier says, “Tearing is like
meditation to me. It helps me relax and get all my anxieties
out, it connects me to something bigger.”

With a wrought iron sun on their patio as the subject, Manier began his first art assignment by sketching the sun and
then he began tearing and cutting. Instead of using paint and
a paint brush to color the image, bits of paper became the
strokes of color as he glued them onto the canvas and built
the image, one piece at a time. He estimates that he used
more than 4,000 pieces of paper from recycled magazines,
calendars, and craft paper. Sun God was the result. An obsession with paper had been transformed into eco-art. They
considered selling it for $100 but after meeting with an art
appraiser who valued the Sun God at $7,500, they decided
to keep it and insure it. The budding artist continued tearing, cutting, gluing, and creating. He decided to call his
creations “coolages.”

33

Grant Manier, The Caribbean Owl, 2012, Eco-art, 26” x 28”

Manier was fifteen years old when he sold his first coolage.
It was an angel’s wing. The piece was purchased for $6,400.
His mom says, “I try to keep most of the originals and insure them but we have sold six of them.” Most of Manier’s
revenue comes from art prints and products including calendars, notecards, and books.
The artist says, “I have many favorites because there’s
something about each piece that has meaning but there are
two that are close to my heart—The Appaloosa and The
Caribbean Owl.” The Appaloosa is a representation of the
horse he rode in equine therapy for his autism, and he won
Rodeo Grand Champion for this coolage in an Eco-art competition in Austin, Texas. For The Caribbean Owl, Manier
repurposed sixty-five movie posters from Pirates of the
Caribbean: On Stranger Tides during its completion. He
specifically chose that poster because he needed the brilliant

34

yellow for the moon behind the owl. Its wings are made
from the mermaid’s hair and the smoke from the pirate ship
was used to create the eerie evening sky.
Since a symbol for autism is a puzzle piece, it seems only
logical that Manier would recycle puzzles and incorporate
them into his work. He began painstakingly peeling the
print off puzzle pieces a few years ago. He wants the image
to be flat so he doesn’t use the entire puzzle piece, just the
top layer with the printed image. Look closely at Peacock
Lane and Mystic Mermaid and you will see puzzle pieces
used in those images.

Grant Manier, Appaloosa, 2010, Eco-art, 20” x 30”

Three years ago, Manier began working with Laurence
Becker, Ph.D., a man who has worked with savant artists
with autism for nearly forty years. He has co-authored two
books and written several articles regarding autism. Becker
says, “I was fascinated by his use of paper, especially the
paper he peeled off of puzzle pieces to make his amazing
art. In all my years sharing the work of these amazing artists I had never seen anything to compare with it. I began
sharing his story and his art.” He also introduced him to Dr.
Temple Grandin, one of the most well-known adults with
autism in the world. They have since become good friends
and Grandin often mentions Manier and shows his work as
part of her presentations.

Manier was only homeschooled for two years and he has
been attending FOCUS Academy Houston (a private school
billed as “a place for quirky kids” with ADHD, autism,
Tourette’s and similar challenges) since seventh grade. He
is now in the middle of his senior year and he’s looking
forward to college next year. The class structure at FOCUS
allows him to complete coursework at home or on the road
when he’s traveling for exhibitions or interviews.
According to Becker, “Grant was awarded the Student Volunteer of the Year award for Houston . . . He’s quite a guy!”
All students in Houston were considered for this honor, not
just individuals with disabilities. Manier has been recognized by the United States Congress, Texas State Senate,
Texas Governor, Mayor of Huston and has received many

35

Grant Manier, Mystic Mermaid, 2014, Eco-art, 24” x 26”

awards. Most recently he was honored at Night of Superstars, Houston, which recognizes adults who have faced
challenges and beaten the odds. The young artist enjoyed
the red-carpet treatment complete with limousine, photos,
and autographs. He says, “I was honored to be there as one
of the superstars. It was a great experience walking down
the red carpet and signing all the autographs. Now I know
how a real celebrity feels.”
In the beginning his mom would drive to Goodwill and other thrift stores to purchase magazines or calendars so that
he would have material to tear. She doesn’t have to drive
around as much now because Manier has become quite
well-known in his area and people continually drop off
magazines, puzzles, calendars, and other materials at designated drop-off locations. Their garage is currently stocked

36

and organized with all sorts of paper materials thanks to the
donations of many people in the community.
When asked what it’s like to live with autism the twentyyear-old says, “It’s hard to explain or define something that
I don’t feel is abnormal. To me, it’s just a way of life. My
life. And I accept it. I use my autistic talents to help those
who are not so fortunate. My autistic talents are: I’m hyperfocused, very patient, and I see colors differently. To me,
seeing colors is like seeing movement. I travel and raise
awareness teaching others about the abilities we all have
. . . at any level. I also raise money helping fund organizations that support those in need of therapy, group, or classroom sessions. I was given this opportunity and my mom
and I believe in paying it forward.”
He travels to schools, organizations, and businesses and he
teaches people of all ages how to create art and save the

Grant Manier, Koi Pond, 2012, Eco-art, 20” x 24”

planet through recycling the way he does. He is frequently
invited to speak at local/state fundraisers and galas where
Manier donates his work to raise money for worthy causes
and to date has helped to raise more than $98,000 for various organizations. Despite his growing celebrity-like status,
he’s a typical young adult who enjoys bowling, playing
video games, karate, and watching TV, especially his favorite series, The Walking Dead.
As a person living with autism, he advocates for others and
shows the world that we all have special talents and abilities. As an artist he is transforming items that people have
discarded into incredible coolages that people treasure.
He’s helping the environment and giving hope to so many.
His motto is: “It’s not about what we can’t do . . . It’s about
what we can do that makes the difference.” To learn more
about his eco-art or to support his mission you can visit his
website at www.GrantsEcoArt.com.t

Grant Manier

37

PERSONAL ESSAY

Just What I Needed
Erick Mertz

I

never imagined myself having a career, let alone one in
social work. During my early years, I did not possess
any real notion of what my vocation would be. Writing
had always been my drive. But I was also cognizant that a
writer had to do something else before they were ready to
answer that call. A writer, I recognized early on, was a person who needed to seek out his or her meaningful subject.
I, however, spent most of my youth oblivious to what that
would be. Purpose is a tricky concept. If one is not mindful,
a world of meaning can sneak right past you, evading detection.
Through my junior and senior years, I served as a volunteer
with the high school special education program. At that
time, this opportunity presented itself more as a bi-product
of my desire to avoid another semester building gun racks
and birdhouses in Mr. Waddell’s shop class. I was sixteen
years old, young for even that age, and harbored little in
the way of youthful idealism. As I chaperoned my student
through the halls of Oregon City High School, I interpreted
my relationship to him as one of simple obligation.
At the end of four years of college and formal literary study,
I still didn’t know what I wanted to be. I loved my chosen
course of study, but I was restless to leave the bristling confines of academia. I did not know what I wanted to be, but
I recognized that I did not want to become an intellectual.
I eventually moved to Corvallis where my girlfriend was a
graduate student in wine making. During the initial months
after my graduation, shacking up with her was the best plan
that I could summon.

38

I failed an editorial examination with the Corvallis Gazette,
misspelling Albuquerque, a word that still tests my ability
to spell correctly. After being turned away from the only job
in the small agricultural town requiring a degree in English,
I decided that I would harvest cauliflower. This move represented desperation. I fleetingly remembered that John Steinbeck had been familiar with the fields at dawn and the smell
of freshly tilled soil. But he also most assuredly knew how
to speak Spanish, a skill I had not mastered. I was fluent in
German, a tongue useless for understanding a foreman who
informed everyone in the crew that we would not receive
payment until September. It was June; I never returned. I
was at rock bottom when I decided to draw on my previous
high school volunteer experience. I accepted a part-time
job providing weekend recreational support for a man who
was developmentally disabled. His name was Kimzy and he
would come to define much more than my time in Corvallis.
While I was hard up for employment, Kimzy required companionship. He received supported living case management
to assist him with navigating the terrain of everyday life.
Getting out of a fourth floor, one-bedroom apartment was
a feat that the thirty-something man with an impressive
handlebar mustache could not do. In the beginning, I would
stand at the threshold, coaxing him to step outside. Kimzy
was prone to paranoia and fits of deep depression. On rare
occasions, he wandered down to the Moose Lodge for a
game of pool and refillable fountain drinks; beyond that fraternal organization though, his social network was severely
limited. He had no friends, only an older brother who lived
on the other side of the valley in Lebanon, and who communicated via postcards that Kimzy was embarrassed to

say he could not read. When I met Kimzy, he would sit on
a folding chair, smoke a Marlboro and listen to the college
students in the courtyard below his bedroom window for
company.
We had both, in our unique ways, been washed out by life.
Kimzy had a traumatic brain injury, leaving him tenuous
and unsure how to manage his life’s basic needs; I too was
adrift, without a definitive port of call. One soon learns that
life comes without a flowchart; no one informs you that
finding a sense of purpose is something requiring constant
vigilance. This fact is one a person gleans in their own time,
often through a painful series of personal missteps.
As I observed Kimzy, I recognized that the brain injury had
robbed him of his sense of humor and the ability to make
connections. This would become my role. I would step into
social situations where Kimzy felt that he was losing control and help provide the cushion necessary to leverage new
relationships. During those first months, I grew to appreciate that Kimzy and I fit well together because we had more
common traits than we had differences.
Over that summer we hit every barbecue, flea market, and
trailhead in and around Corvallis. I no longer wondered
who read the newspaper listings for church rummage sales
with genuine excitement, because we had become those
people. Wherever there were hot dogs sizzling on a grill,
Kimzy and I found them and worked on integration skills.
Corvallis is an insular place constructed around the university community. I was pleased though, how, with some
encouragement and practice, Kimzy worked his way into
peer groups and even managed to rekindle some of his old
school friendships. He rediscovered a local’s sense of pride
and showed me some of his old haunts. Our summer culminated when Kimzy took a part-time position washing dishes
at the same Moose Lodge he sometimes visited. For the first
time in his life, Kimzy had a job.
People with disabilities often form their own communities. Working with Kimzy was made tricky by the fact that
he did not identify himself as a person with a disability.
The specific cognitive delay that Kimzy experienced came
through a TBI, or a traumatic brain injury that stemmed
from a car accident when he was seventeen. Prior to the
accident, Kimzy was a regular guy who liked classic rock
records and girls. He worked on old cars after school and

snuck cigarettes and beer onto the fifty-yard line late at
night. Kimzy was into normal stuff until the violent head on
collision robbed him of his ability to enjoy, or even remember those things. Because that delay was established before
eighteen, the disability was characterized as developmental,
making him eligible for ongoing adult services.
Kimzy avoided people from his program. During that first
summer, there were only the two of us. We never joined
their group outings to the casino or swimming pools although they were always offered. As Kimzy and I grew
closer and developed a friendship, I came to appreciate
his resistance as honest. He was aware of being different,
always grasping for those bygone attributes that taunted
him, memories just beyond his reach. He was a young man
who had been thrust into a life-changing disability. Kimzy
wanted connections; he was not, however, willing to risk
direct affiliation with others in the disability community in
order to have them.
Summer’s close brought more than just seasonal changes.
The program administering Kimzy’s support offered me a
full-time advocacy position; and my girlfriend and I had all
but split up. Although I had worked almost five months for
the program with Kimzy, I still considered my role there
as part-time, transitory employment. The “something better” that I had been holding out for never came, and being
newly in need of increased income, I accepted what would
be my first case management position. According to my
new job description, Kimzy and I would continue with our
recreation routine. Only now, instead of working together in
a one-on-one situation, I was charged with bringing a larger
group with us out into the community.
From two, we became seven, a curious menagerie of men
with disabilities entering pool halls and bowling alleys. The
new group required what felt like half the night just to order dinner and the other half just to get situated back in the
white, Econoline van. It did not take long before our social
time resembled something radically different from the quiet
conversations Kimzy and I had enjoyed previously.
I assumed Kimzy would understand my accepting a new
position. I was wrong though. Within weeks, we had drifted
far enough apart that being together began to feel uneasy. I
questioned whether our summer had indeed been as special
as I remembered. One evening, as the group poured out
39

of an all-you-can-eat Chinese food buffet, I asked Kimzy
about our friendship and the recent changes that had taken
place. For a usually tough guy, Kimzy responded emotionally. His voice cracked as he said he understood that I needed a full-time job. Kimzy was also close enough to me to
know that I was recently on my own. As the others rambled
out of the lobby, Kimzy continued, saying that he would
rather have some of me than none. His confession broke my
heart. Later that night as I drove around in the empty van, I
felt as though I had betrayed a good friend.
The larger, more finicky group dynamic demanded more
variety. Gone were rummage sales and hot dogs. Corvallis
abruptly shrank in size, and soon I was looking ten miles up
the road to Albany. Offering similar blue-collar charm without academic pretense, the sleepy mill town doubled the
social opportunities at our disposal. Having a second bowling alley and a second dollar movie theater staved off those
uneasy feelings of repetition that plague a social coordinator. However similar the towns, putting all seven men into
the van for a short drive gave us a morale boost similar to
an impromptu college road trip. We pushed through the following spring and into summer as The Magnificent Seven.
My relationship with Kimzy had stabilized. Although I was
not particularly happy with the results, I accepted what
had transpired as our friendship’s final evolution and made
peace with the fact that Kimzy and I had perhaps shared our
finest days together. I was wrong on both counts.
Even as my attention had been diffused among the six other
clients I was responsible for, my understanding of Kimzy
had continued developing. His wardrobe of vintage clothes,
the tidbits of speech he used without irony, his walk; everything added up to a composite memory he could only
recall through movies and music. Kimzy was stranded in a
single, nonspecific moment that he had constructed out of
trace recollections from before his accident. I could see that
he was keenly aware of the succession of events leading up
to his accident; those were clear. What troubled him though
was moving forward emotionally from the instant that the
other car slammed into his. The injury was a watershed in
his development of feelings. He seemed unable to form new
ones, nor recall the old.
Our adventures as The Magnificent Seven continued. We
were creatures of habit. Tuesdays at the Buzz Saw Bar &
Grill in Albany featured Lady’s Night, drawing big crowds
to dollar drinks and a decent, greasy spoon menu. My guys
loved Lady’s Night, as it was loud and visually stimulating,
often spilling out onto the porch and the riverfront promenade and continuing loudly into the morning. When checking out the van on Tuesdays, I used to write “El Dorado”

40

in the logbook as our destination. Many people regarded
the Buzz Saw as a dive, but for my tangle of unassuming,
single guys on their social night, there was no better hub for
people watching in three counties.
One Lady’s Night in particular sticks with me. The sequence of details, vivid and precise. It was hot, pushing
one hundred degrees. The van windows were open and still
the interior smelled of poor hygiene and unwashed clothes.
Kimzy sat in the front seat beside me. He had not occupied
the “co-pilot” spot for quite some time, and although the
privilege should have made him happy, he did not seem
so. Kimzy wore the cheap, Dollar Store cologne that his
brother sent him every year for Christmas. His plain, white
T-shirt was skin tight, a cigarette pack rolled into his sleeve
somewhere underneath the black leather jacket he wore,
collar up. Regardless of the oppressive summer heat, this
was Kimzy’s choice to wear when we went out on the town.
I thought of this as his outfit of hope.
We arrived at the Harrison Street bridge crossing. I idled
the van while facing east at the red light. The anticipation of
the men in the van was palpable: Howard grasped the back
sliding door handle, ready for a long awaited smoke while
with a quick, relieved gasp, David located the wallet he was
prone to losing in his pocket. Not a person uttered a word.
They could all see the neon lights of the Buzz Saw on our
right across the river. Everyone knew that in moments we
would be there.
I remember lifting my foot off the brake as the song on the
radio began to switch. We were thrust into a familiar pop
tune in the unexpectedly blissful way that only a classic
rock radio station can do. Heads began to bob. Richard,
filled with the beat, laid his arm across the seat back and
grinned. Kimzy turned his head on cue with the first drumbeat of The Cars’, “Just What I Needed” and sighed as the
van accelerated. We crested the bridge as Benjamin Orr
sang the first line and Kimzy let out a sigh.
“What’s up, Kimzy?” I asked.
“Don’t know,” he replied. “I was just thinking of this song.”
The song was then, and still remains, one of my favorites
in the entire rock and roll catalog. I reached down and
turned the radio up hoping to draw a further response out of
Kimzy.
“What about it?” I asked.

POETRY

Kimzy started to speak, but again paused. With the loud
music drowning out any voices from the back seats, there
were, for the first time in so many months, only the two of
us on this journey. A sly smile broke across his face as we
listened to my favorite line, the one in which Orr sings “. . .
it’s not the ribbons in your hair. . . .”

Joan Mazza

“I remember,” Kimzy replied, finally. “I wrote down the
lyrics to this song in a note and slipped it into the locker of
a girl that I liked.”

November Twilight

His gaze drifted. I followed his eyes down river, further
down than the horizon. I imagined he was looking clear
back to that high school hall, all the way to that specific
locker scented with rust and that cheap cologne. The song
had allowed Kimzy to punch through a once impregnable
fog and there followed the clearest, most pure state of truth
I had ever heard, or would ever hear again.
“In this song,” he continued, “the words remind me of what
it was like to be cool.”
I parked the van. The other men got out and walked to
the bar, leaving Kimzy and me alone. The song was not
through, but once it was, he opened the door and stepped
out onto the sidewalk. I remember him leaning on a parking meter, running a comb through his dark hair. Then he
smiled, straightening his collar.
“You coming?” he asked.

In the last light I walk down the west woods path
to see what rains have brought. In the soggy bog
mushrooms sprout, white caps curved inward.
One box turtle makes its way toward the creek
with a rustle of leaves that sounds like crinolines
of my girlhood. Leaves float down with each breeze,
exposing more sky and squirrels’ nests in bare branches.
Deer and raccoon tracks in the mud at my boots.
On an old stump decorated with shelf fungi,
I sit and wait. Like asking for a dream, I imagine
what I want. When I look up a deer looks back.
Our eyes meet, she bounds off, flash of white tail
and movement next to her— this year’s fawn.
In the gloaming, I wish them well. Hunting season
is about to begin. To soothe my worry, I gather
kindling in my garden bucket for the evening’s
warmth and crackle of a fire, stack logs
next to the wood stove.

I nodded and watched him vanish into the bar before succumbing to a wild burst of laughter filled with light and relief. We had come full circle, Kimzy and I. As I stepped out
of the van, I wanted to remember the moment’s every facet:
a green steel bridge, the low ebb of a river at mid-summer,
how a warm breeze tingles on bare flesh. Most of all, I
wanted to capture my first divine feeling of purpose.t

41

POETRY

Mike Traber

The Building of the Nativity
I

III

Print to breath to speech
the Talking Book Machine sounds
I listen.

I wake to rewind
the Talking Book Machine squeals
while its cassette runs backwards

In 1714 a frayed footbridge in Peru snapped
like Christmas stars from an evergreen
five bodies fell.

I rebegin at the beginning
five bodies have yet to fall
their Christmas stars shine on.

Published in 1927
the year my mother was born
The Bridge of San Luis Rey
the year an aircraft first flew solo
across the Atlantic.

A frayed footbridge is as evergreen
as statues
and a white stained stable.

Sounds to white noise to an end
the Talking Book Machine reaches silence
I sleep on.
II
She is with the dead
she is with my mother
Both are wearing tan suits
she a pants suit
my mother in a skirt suit
they are kneeling,
like fisherwomen reaching
into a cardboard box
pulling up white stained walls
and a gabled roof
to make a stable,
finger high statues of
a blue-robed mother, her bearded spouse
their babe in a manger
brown cows, a shepherd leading white sheep
crowned magi on yellow camels
“Are you going to Midnight Mass?”
her husband asks my mother
“We’re parked across the street from the church.”
They leave together.

42

The Talking Book Machine sounds
solo and steady
like an aircraft crossing the Atlantic.

Jennie Chapman Linthorst

Autism
You knocked on my door
in the middle of a life
I thought was under my control,
and settled in comfortably
behind the eyes of my son.
I am trying to get to know you,
to observe your daily needs,
to chart your frustrations, your ecstasies,
and the windows of possible change.
You swept through my house
and cleared away
all the fantasies, pictures, and maps
of the family
I was supposed to have.
Your luggage was heavy,
loaded with old stories,
fat with fear.
You leave things lying around
ready to trip me
just as I begin to walk again.

Previously published in Autism Disrupted:
A Mother’s Journey of Hope,
Cardinal House Publishing, 2011.

Jennie Chapman Linthorst

My Disappearance
The conversations in my mind
have grown too big, too intense
for the grocery aisle
or the sandbox in the park.
I am mapping out miracles,
creative interactions,
scheduling brain scans, special meals
and blood work;
opening my door to therapists at 7 a.m.,
and pushing my true thoughts
deeply away.
My silence is trying to grasp
how to find time for a marriage
that has been placed in the wings
while my son’s life
is choreographed on center stage.
My silence holds possible dreams
of a normal life—
with family vacations, car trips,
and time not scheduled.

Previously published in Autism Disrupted:
A Mother’s Journey of Hope,
Cardinal House Publishing, 2011.

43

FICTION

Healing Hands
Katherine Westermann

I

held them down. After the electricity passed through,
after their brains shorted out and they were blank inside,
I held the writhing bodies. Curled up like dead spiders,
muscles twitched, and drool bubbled from sagging mouths.
I stuffed foam between teeth to protect protruding tongues.
I felt the cords on their necks bulge, my fingers slippery
with perspiration, and for a moment, as I leaned over the
twisted faces, I felt their agony. When I was young I thought
administering electroshock was like lovemaking without
the passion, without the pleasure. But after having my son, I
realized we were birthing them. The therapy killed and gave
a new life. Whether that life was better or worse was God’s
doing. And at the state psych ward, God was a mighty and
terrible force. The patients knew this. They screamed about
it all day long.
I get out of my car and look up at the institution. I never
worked here. My daughter-in-law tells me it’s a nice facility,
but the windows stare from the brick façade like so many
stunned and mindless eyes. These places are all the same.
I hear a door slam, followed by my daughter-in-law’s hoarse
voice. Lately, she always sounds as if she’s recovering from
a cold. “You’re here,” she says.
She looks tiny standing next to her SUV. The gray streaks in
her hair stand out in the winter sun. She squints up at me;
her face appears to be smiling, but she isn’t happy. Her feet
are planted apart, and she holds her arm with the cast like
a weapon. White and bulky, it dares anyone to say Simon

44

might be too dangerous. Janet still sees him simply as her
son, my grandson, that little boy we all petted and adored.
But me, I can’t ignore the truth. I don’t really have a grandson anymore.
“Where’s Rick?” I ask when my son doesn’t emerge from
the passenger’s seat.
“He wanted to watch the game.”
Meandering through the parking lot together, I wonder how
long she’s been coming on her own. I’m not accustomed to
being alone with my daughter-in-law; luckily neither of us
feels the need to mindlessly fill the silence. The grounds are
immaculate. Bare birch trees dot the rolling close-cropped
lawn. We crunch up the winding gravel path in silence.
They’ve paid to keep Simon here for almost a year now.
For two years I’ve managed to avoid these family visits. So
many times I’ve ignored Janet’s favorite lie: Your grandson
misses you. But now that I’m here it’s just as I expected, a
bitter homecoming.
The lobby is furnished with plush leather chairs and warm
colors rather than institutional greens. But it still smells like
a psych ward, with Lysol barely covering the sour smell of
sweat, excrement, and fear.
Janet goes to check in. I glance over at the nurse behind
the counter. They all wear loose comfortable scrubs now.
Her scrubs feature kittens playing with yarn. I still remem-

ber the crisp white dresses we used to wear, with our hair
pulled back in a severe bun, and our heads decorated with
little white hats. The head psychiatrist discouraged makeup
and any jewelry besides a wedding ring, and he absolutely
forbade perfume. He wanted us as asexual as possible. Now
our white uniforms are only worn by strippers and provocative girls at Halloween parties.
At the desk, Janet signs her name with her left hand, and
her signature comes out shaky and broken. We sit down together and wait for someone to escort us to Simon’s room.
Janet settles in next to me. She wears the glazed, bored
expression of someone who spends a lot of time in waiting
rooms. Picking up a battered copy of People magazine, she
flips through the pages not bothering to read the text.
“It’s good that you came,” she says, her soft voice barely
managing to break the silence.
“How could I say no? Rick called me practically in tears.
He thinks Simon is really dangerous.” I know my son; he
would only call me if he were out of other options.
She scoffs. “Dangerous, that’s Rick’s new catch phrase. Simon got agitated, that’s all.”
“Agitated?” I echo.
“Shit happens.” She glances at her cast; an involuntary tick.
Simon attacked her. Actually, Rick told me that Simon tried
to kill her. Rick couldn’t stop him. Two orderlies barely
managed to stop him, and she tells me that shit happens.
After a long pause she says, “He’ll be glad to see you. It’s
been too long.”
“He won’t even know who I am.”
She stares at the far wall, as if the hospital art is suddenly
fascinating.
Simon leapt at her unprovoked. They always call it unprovoked, but she said something. Rick told me she called him
Kiddo, like we used to when he was small. I know how
it is, something in their eyes shifts and they lunge at you.
The fall is almost slow motion until your body cracks on

the cold floor. I remember jerking away one second too
late. Did Janet see it coming too? I remember how stars
exploded behind my eyes when Willy punched me, and I
remember assisting in his lobotomy.
Willy had been my favorite patient. Before the attack, I
even hoped he would recover. But after the attack, in the
age of Walter Freeman’s use of lobotomy as an easy fix,
Willy didn’t stand a chance.
My hands were steady. The light gleamed on the surgical
tools. The instruments were cold, even through the sterile
latex gloves I could feel the chill. The surgeon apologized
for asking me to operate on a patient I’d known. Even the
doctor used the past tense—he knew what his scalpel was
cutting away. My left eye was still swollen shut during the
surgery. The bruise pulsed with heat and pain at every heartbeat. I focused on the sting. I focused on the child growing
in my womb. If the tools hadn’t been so cold, I might not
have felt them at all.
The attack was unprovoked. Everyone agreed. And the doctors labeled him unpredictable, dangerous. But I’ll always
know I touched his shoulder. There was no reason to touch
him, except that I wanted to. I’d been nursing long enough
that I should have known the patients were easily upset.
But Willy was so deeply sad, and painfully handsome, like
a flower drooping in a vase; his limbs sagged like loose
petals. For a moment he’d felt wispy beneath my fingers.
His warmth barely managed to radiate through the hospital
gown. Then he went rigid. In my youthful ignorance, I had
thought these hands could soothe.
On the maternity ward, six months after Willy’s lobotomy,
I wept when they handed me my son. My husband told me
it was just exhaustion, but I swore I could feel madness
when I kissed my baby’s forehead. I felt the straps already
tightening around his wrists, felt the cold instruments in the
hands of a future nurse, who today was just a child. And
already I knew she wouldn’t hesitate to slice through his
brain, the brain I had spent years nurturing. She wouldn’t
even be strong enough to ask the doctors to spare him, tell
the doctors it was her fault. Perhaps afterward, she would
cry in the bathroom, her bruised face aching and burning
with each sob. She might pray, as I had prayed. But my son
would already be gone.
45

As Rick grew older, I watched for signs of the disease. I
discouraged make-believe. When my ruddy four-year-old
introduced me to his imaginary friend Patsy, I told him,
“Patsy isn’t real. Never talk to people who aren’t really
there.” My husband repeatedly said that there was no history of schizophrenia in either of our families, but I knew
fate could override genetics. Technically, my husband’s
repetitious logic was right. Rick would never do more than
visit a psych ward.
I paw through the pile of last year’s magazines, but the out
of date celebrity gossip doesn’t hold my attention.
“Are you sure visiting him so soon is wise?” I ask, glancing
at Janet.
“He has good days and bad days.”
“They all do.”
She sighs and rubs her eyes with her one good hand. “You
can’t just lump everyone together. Simon has an illness, like
diabetes or anything else.” Her thin voice wavers and goes
out.
Schizophrenia is a death sentence for the mind. A doctor
told me that once. Back then I disagreed with him. Thorazine was new on the market, there was hope. Chemicals
absorbed into patients’ stomachs and they became manageable. Now, fifty years later, our hopes are still pinned on the
same multicolored tablets. So many pills that no one even
knows what they do. Even the doctors have to check their
charts before they speak. Drug cocktails help some patients
become stabilized enough to reenter the community, but
my grandson is what Janet and the doctors call “a difficult
case.”
Eventually someone comes to take us to Simon’s room.
Janet has done this countless times. She chitchats with the
CNA, not bothering to glance into open rooms. She doesn’t
need to see nurses spoon-feeding catatonics; young attractive men shaking and howling like animals. She talks about
the weather, and asks the nursing assistant about her weekend.
When we get to Simon’s room, two orderlies join us.
They’re both broad and tall; one is ginger and freckled, and
the other is black with a shiny, bald head. They nod at Janet
in a familiar easy way and she returns a faint smile. Simon
is slumped in a chair by the window. His unfocused eyes
are directed at the floor, and his skinny body is bent over
like a question mark. Janet goes to him, crouching down
next to his chair. The last time I saw Simon he was raving

46

about chemicals in his food and knocking things off the
kitchen table, lit up, his flyaway hair and his electric blue
eyes glowing like neon. He crackled with energy. They’ve
stamped him out. That’s all we can ever do, take madness
and reduce it to tragedy.
“How have you been, Sweetie?” she asks taking her son’s
limp hand. “Simon?” A spindle of drool slips from his
sagging lower lip. Janet stands up, her face drawn taught.
“What is wrong with him?”
“He’s just sedated, Ma’am,” says the black orderly. His
deep rumbling voice is soothing, but it seems to agitate Janet even more.
“I need to speak to his doctor.”
“Honey . . .” I say. They need to subdue violent patients,
especially strong young men. The words play in my head,
but I cannot bring myself to utter them. I think of all the
violent patients I subdued. I injected convulsive levels of
insulin, strapped them to the electroshock tables, handed
doctors instruments to slice away their frontal lobes. And
my smallest guilt, my daily sin, I administered as many pills
as it took to keep them calm.
“I’ll be right back. I’m going to go find his doctor,” says
Janet.
Once the sounds of her footfalls disappear down the corridor, the room is soundless. I linger a moment watching the
door. I imagine getting into my car and driving away from
this. When I transferred into geriatrics all those years ago,
I hoped I was done with these places forever. But that bent
figure by the window looks so much like Simon. The grandbaby I held to my chest and bottle fed, the toddler who
picked bouquets from my garden, the child who collected
seashells, and the teenager who loved to paint. I approach
him.
Another string of drool dribbles from his mouth. I crouch
by his chair. He’s been shuffled from ward to ward, doctor
to doctor. He’s received a cocktail of pills and injections.
The Bible tells us about the sins of the father, but what
about the sins of the mother? Or the grandmother? Was it
my hands that held him down? My hands that fed him too
many pills?
I had prayed over Simon’s father, wept and prayed. But I
had forgotten to beg for Simon. The chill of the scalpel had
faded from my fingers. By the time Simon was born I was
a widow, a gardener, a churchgoer. I thought my past had
faded away. But my sins live on. Willy will be a lobotomy
patient until the day he dies.

POETRY

I curl my fingers around Simon’s forearm. Wrinkled, with
varicose veins, my hands are different from the hands that
strapped patients to their beds. But my fingertips still feel
the coarse leather. His skin is so soft I can barely feel him.
For a moment I wish he would broil up and break me too.
Crack me deeper than he managed to crack Janet. Then at
least I’d know for sure I couldn’t hold him down.
Stroking his arm, I whisper, “I missed you, Kiddo.” He
doesn’t hear me, but like his mother I’ll pretend he does.t

Lola Neff Merritt

October’s Show
Golden sun pours down on meadows like

a warm blanket,
white astors frost the south hedgerow,
clumps of goldenrod crowding in beside it.
The gloriosas, showing summer’s wear,
still peek out among fall’s weeds.
One gold lily yet blooms on a dying bush,
and tiny, wild daisies grace the rhubarb

plot.
Beside tall, dead spectres that were

summer’s lilies,
Bright red berries wait on the honey–
suckle tree
For hungry birds who will soon find them.
A flock of irate crows scream as a hawk

swoops down.
Scattered across the back lawn
A few brave dandelions
Lay ready to greet the first cold snap

of fall.

47

POETRY

Yuan Changming

Childhood Secrets
When I was three or four, I buried
Several hard-gained marbles
(One of which was like my left pupil)
Near our rented room, hoping one day
They would grow into magic trees
Half a century later, I dug them all out
On a dull afternoon. The moment
I put the first one on my table, a flock
Of crows flew up; when I thought of
The second, it burned like a forest fire
Now I hesitate to write the word “immortality”
Lest my last marble should melt with diamonds

Yuan Changming

The Blind
Blind as he is, he always
Holds the light high
Above his head, both
To illuminate the way
For others and, perhaps
Equally important, to avoid

Being run down
By those rushing amuck
In total darkness

48

Rae Rose

It Is Taking
Whatever it is,
it is taking.
It took the feeling
out of your left arm,
it took your volume control,
you shout your hellos.
It took your dark hair out
in clumps, it takes your energy.
You stretch out on your bed,
close your eyes, dark lashes,
your body stained with bruises.
The music plays:
Don’t say nothing

bad about my baby
your kettle on the stove

I love him so,
begins to whistle,
you summon enough energy
to lift your body.
You are running out of money. he’s good-he’s good to me.
Fees and copays,
doctors, nurses.
You say you’ll move into a new place:
we tell you no.
We give you reasons.
We state facts.
We say you are wrong,
we say we are so logical.
There is nothing logical about this disease,
there is nothing logical about what is happening.
We want to take your car—
you’re too dangerous now.
Who am I to tell you anything?
I am only just learning
how to stop listening
to people who say they know better.
Out of words, we sit together.
Whatever it is, it is taking.

49

FICTION

Men of Science
T.L. Sherwood

T

he plane landed, but Tyrone wasn’t paying attention.
There were thousands of tiny geometrical shapes
embedded in the terrazzo floor at his feet. Hexagons
and trapezoids and triangles with all sorts of unusual angles
covered the smooth floor on the other side of the blue carpet. His mama told him he couldn’t leave that carpet, so he
stood at the very edge. She was busy staring out the tall,
wide windows. Two times, he looked over at her and she
was gazing back at him. She was smiling so big her teeth
showed.
Tyrone yawned. It felt like they’d been waiting forever.
Grandmom and Aunt Sarah and his cousin, stupid-head
Ronnie, were there too, but none of them were interested
in Tyrone today. Usually, Grandmom had cookies for him
and told him stories. When Aunt Sarah babysat him while
Mama went to night class, he got to play Nintendo with
Ronnie. Stupid-head Ronnie always killed off his guys in
the games. Not today though, because today was a very special day. Daddy was coming home.
He wished he’d been able to stay home with Grandpa. He’d
even looked at Mama, right in the eye, just like she always
asked him to and he said please before and after he asked to
stay home instead of going to the airport.
“Tyrone, your Grandpa is going to be too busy cooking the
chili your Daddy loves and dealing with all the people coming to the party. He can’t keep an eye on you, too, honey.
Now go on and get your coat. You’ll like the airplanes.”

50

He screamed then. It didn’t matter. He fought and kicked
but Aunt Sarah and his mama got the coat around him and
zipped it up. His arms weren’t in the holes, so he couldn’t
hit or scratch. Aunt Sarah scooped him up and put him in
the back seat of her car and pulled the seatbelt across his
lap.
“You shush now. I know you don’t remember your Daddy
so good, but he loves you. I bet he gets back and you won’t
need to go to the special classes no more. Wouldn’t that be a
fine thing, Tye? Be in the normal class? Play with the other
kids your age?” She stared at him, hoping for an answer. He
had none to give her.
“Geometry.” That was the word Grandpa had taught him.
All of those shapes he loved so much had specific, special
names. He was learning those names slowly. His Grandpa
was real smart. He told Tyrone that all those shapes were
considered a form of geometry. Not only was geometry
easy to say, people knew exactly what it meant. Once, he’d
tried to explain to Ronnie how squares always looked yellow and smelled like bubble gum. Ronnie called him a freak
and punched him in the arm.
“Tye! Tye, darling! Look!” Grandmom was calling. He
turned around; his mama was clutching both her hands tight
to her chest like her heart might jump out if she didn’t hold
it in. “See? That’s your Daddy’s plane right there!”

He turned back to look at the shapes in the floor. He really
didn’t remember Daddy. Mama showed him pictures of a
man standing in front of a flag. Lots of people had pictures
like that, though. Even Anna Sabrina Clark across the street
had a picture like that in her living room, and her Daddy
was home all the time.
“Hey!” Tyrone yelled, “Let me go!”
“You gotta be at the door to greet your pa, you idiot.” Ronnie growled in his ear.
The door opened to a carpeted corridor that led downwards.
It made Tyrone afraid. Everyone in the waiting lounge was
jumping up and down slightly. People started up the corridor. First came an old woman in a wheelchair with her
hands crossed over a very large black purse. No one was
jumping up to see her. A flight attendant continued rolling
the old woman away. If Ronnie would let him go, he’d run
over and walk along side of her. Maybe she had cookies in
her purse.
Two thin girls with metal sticking out of their eyebrows
were the next ones up the ramp.
“I don’t see anyone.”
“I bet they’re downstairs.”
“Let’s hope so. I’m sooo sick of walking.” The one with
very black hair replied as they walked past Tyrone and Ronnie.
The jumping grew more intense. Two men in dark uniforms
were walking up the corridor. One was swinging a bag
alongside him. Tyrone looked for his mama, but she was
hidden behind the other jumping people. He wanted to cry,
but if he did, Ronnie would hurt him.
He closed his eyes tight. Parallelogram, he said to himself
and thought of the shape. Mentally, he moved the sides until
the four corners were all at ninety degrees. Square. Next, he
extended the two horizontal lines, rectangle.

“Look!” Ronnie was pulling him up and let go of his arms.
Tye meant to swing and smack Ronnie in the head, but he
looked first and was caught up in the arms of a man in a
dark suit. Colorful rectangle ribbons were pinned across the
man’s chest.
“Hey there little man! How you been? I missed you.” The
man smooshed him tight and kissed his cheeks. Tye’s face
was wet with the man’s tears. The man handed him back to
Ronnie.
The jumping was replaced with walking. Ronnie held his
wrist as everyone made their way downstairs to the baggage carousels. Grandmom and Aunt Sarah and Mama kept
taking turns smiling and hugging and talking to the strange
man that had called him a “little man.”
A red light came on and a buzzer sounded. Tye started to
rock back and forth on his heels. He didn’t like lights that
flashed, especially red ones. The conveyor belt started to
go around carrying bags and boxes and even a guitar case
along the serpentine path.
On the drive back to Grandpa and Grandmom’s house, Ronnie sat in the back with him. On the way to the airport, his
mama had sat there and Ronnie was in the front seat. Now,
Mama was in Grandmom’s car with that man. They drove
past a long line of cars on the side of the road. Aunt Sarah
pulled into the driveway and parked behind Grandmom’s
car which was being swallowed up by the garage door.
“You two stay out of trouble. Nobody wants to be yelling at
anybody, got it? It’s a happy day. Don’t ruin it.” After that
pronouncement, Aunt Sarah unlocked the backseat doors
and they both got out.
Tyrone followed behind them into the door of the garage.
When the door that led to the kitchen opened up, the sounds
inside flew out and pushed him backwards. He went to the
other side of his Grandmom’s car and sat down. He couldn’t
find his tub of sidewalk chalk. He dipped his finger into a
bottle of motor oil to draw some of the shapes he remembered from the airport floor. Soon, the garage floor was
filled with the outlines of shapes whose names he wanted to
learn.

51

The door to the kitchen opened. The sound that came out
wasn’t nearly as powerful as it had been earlier. He stood
near the rear bumper of his Grandmom’s car. The man in
the uniform walked around looking at the oily shapes on the
ground. He went to the front of the car and lit a cigarette.
He started talking without looking directly at Tyrone. He
liked that.
“Your Grandfather tells me you’re learning geometry.”
When Tyrone didn’t answer, the man continued. “I’m
more of a physics man, myself. I used to play basketball
in school. I was pretty good. It took a while to learn how
to run and jump and make it look like I was hanging in the
air.”
Tyrone thought hanging in the air sounded impossible, but
he didn’t say so.
“Now your Grandfather, he’s more of a chemist. How he
can take cans of beans and tomatoes and meat and add the
spices just right every time, well, that downright astonishes
me.” He took a drag off the cigarette.
“Why don’t we go on in. It’s getting kind of cold. The meteorologist on TV said we might see some snow tonight. Chili
always tastes better with snow on the ground.”
The man was careful to ground out his cigarette in an area
where Tyrone hadn’t drawn one of the shapes. He held out
his hand.
“I’m sorry I haven’t been here in a long time, Tyrone.”
Tyrone just stared at the man’s fingers. The man turned and
walked toward the kitchen door. Tyrone followed him. He
didn’t understand why, but tears started to run down his
cheeks. Maybe that was biology.t

52

Sandy Olson Hill

Med-time
Thorazine shuffles my sister
smacks of tardive dyskinesia,
cigarettes, tooth decay
bangs border her forehead
plastered in a hairspray straitjacket
Gidget does 50
slap dash of a ’do
garish pink bows
the waitress seats
us in the back
for our convenience
so we can talk
so we won’t be disturbed
so no one
will hear words
wince into air
over our heads
dismissed, never there
to protect my sister
to hide her away
from people like that
like them
bastards like me
on her birthday.

POETRY

Barbara Astor

Upon My Delay Coming Home
from the Hospital to Join My Twin Sister
He races back and forth
in a frenzy between us,
his small accusatory finger
pointing at me.
In an urgent voice
directed to his mother,
he asks, “Who’s that?”
The boy revisits my look-alike
and returns to me
eyeing an impostor,
a Johnny-come-lately.
“Who’s that?” he cries again
to his mother. The act repeated
till he slumps defeated
into a corner.
My brother’s words echoing
through the house,
“Who’s that?”
“Who’s that?”
“Who’s that?”

Lola Neff Merritt

A Gathering of Geese
They settle on the dead cornfield

seeking food;
a bright, winter sun shining on their

white breasts
as they gracefully glide in,
uplifted wings tipped back,
and find their place within the group.
Slowly, they mill about, promenading
on the frost-covered ground,
making their own sweet music
in the crisp, morning air.

53

POETRY

Mary Langer Thompson

Wishbone in Moonglow
I leave you to the doctors
and nurses,
come home to our dark kitchen
that dry, brittle wishbone
still on the counter,
illuminated by a moonbeam.
We were going to split it together, but not now.
And anyway, it seems silly
to pull in opposite directions
as though rivals.
I step closer.
The bone’s shape is an open heart,
and I know
that I want for you
what you need for me
what we hope for each other
until the clouds cover the moon forever—
that the light not leave us
tonight.
Previously published in Cuivre River Anthology,
(2006, Saturday Writers) and in Fresh Ink,
(2005, California Writers Club).

54

Nancy Scott

Sometimes What We Miss
When she heard the child cry out,
her right arm jerked to a grotesque angle,
fingers splayed and froze.
She dragged her twisted right leg,
foot curled inward, as she limped
across the floor.
From its crib, the child reached out perfect arms,
kicked its bare feet against the bars,
insistent like a ragged shutter
on a windy night.
With her left hand, she squeezed rigid
fingers into a fist, bent her shoulders
and gently scooped the child with her forearms.
Gurgling, the child nuzzled against her neck.
She crooned a lullaby of lemon trees
and goat bells tinkling,
the music of laughter
of shoes dancing, hands clapping
to the beat of the tarantella.
In this way Rosalita taught the child
how to make its body sing.

Previously published in Out of Line, 2003
and in author’s book, Down to the Quick
(Plain View Press, 2007).

55

PERSONAL ESSAY

The Last Walk
Mary Dyer Hubbard

H

is wife was my hairdresser, Angie. Brash and compact, transplanted from the streets of South Philly
and proud of it, she cut people’s hair with flair and
attitude. For the longest time I couldn’t figure out what the
deal was with Matt. He sat companionably nearby, neither
bored nor intrusive with the shared intimacies that often
take place between a beautician and her client. Often I’d
forget he was there until Angie’d interrupt her own animated staccato to pull him in with a softened voice, “Didn’t we
have a good time at the barbeque on Saturday, Matt?” Or,
“Remember when we went canoeing together and brought
the two dogs with us?” Sometimes she’d point to a particular photo on her corkboard collage to show me the two of
them canoeing or doing some other outdoor sporty event
before launching back into her rat-a-tat monologue as she
clipped away.
Matt didn’t have a job that I was aware of, even though they
both looked fit and my guess was they were in their mid30s. He seemed to have no designated role in the salon but
would answer the phone willingly at Angie’s request: “Matt,
Honey, would you get that for me?” I gradually became
aware that when Matt got up, he’d ease out of the chair gingerly, either in pain or trying to avoid it. Months of haircuts
went by before Angie finally cleared up the mystery with a
look to Matt and his slightest of nods back. “Matt has juvenile diabetes, you know. Has to be real careful of his feet,
can’t risk getting them infected or he could get gangrene.
Gets treated at Redeemer Hospital where you work. Right

56

Mary?”
“Right,” I said I could be contacted through pastoral care
at the hospital where I worked as a chaplain if they ever
needed me.
Her call came several weeks later. Matt had been admitted
to the hospital and was going to have surgery the next day
to amputate his right foot. Gangrene was winning. “Would
you stop in to see him before he gets wheeled into surgery,
Mary? I’d feel so much better if I knew you were with him
beforehand.”
“Sure Angie, I’ll be glad to do that.”
Matt was lying in bed waiting for the transport volunteer
to come get him when I walked in. This was the first time
I’d seen Matt by himself without Angie’s dynamo presence
and I noticed there was a stillness about him. His longish
brown hair framed a gentle face and his dark eyes held unnamed feelings: sadness, fear, anger, regret? I sat quietly in
the chair beside him and waited to follow his lead. “I don’t
want to lose my foot, Mary. I’ve held off surgery for so long
and it just got too bad. Now it’s either my foot or my life, so
I guess it’s my foot.” We sat together without speaking taking in the reality of what was about to happen.
Then a strange thought occurred to me and I just put it out

there. “Matt, do you think it would be good to say goodbye to your foot before you lose it?” As odd as my question
was, he seemed to take to it.
“How would I do that?” He started but then went still. Finally he lifted his bandaged foot up a few inches as I slid
a pillow under it which allowed Matt to see his foot from
a prone position. “Hello, Foot,” he began. “I want to tell
you I’ve really enjoyed having you all these years and I’m
gonna miss you when you’re gone. I sure liked walking
with you, running, and skiing, and dancing. Yeah, I’m really
gonna miss dancing with Angie. We were something on the
dance floor. I guess it’s almost time for me to say good-bye
to you, Foot. I wish I didn’t have to because you’ve been
great but I just want to say thanks.” By then we were both
in tears but strangely comforted as we sat quietly waiting
for Matt to be taken away.
The next day I braced myself to visit Matt in his hospital
room but was surprised when he greeted me with an optimistic spirit. “Mary, I’ve been thinking. They have some
really great prosthetics these days. I bet I could get fitted
with one that will let me do all those things we talked about
if I really work at it. I bet I could even learn to dance again,
twirl Angie around the dance floor same as before.” He had
hardly finished when his surgeon came in to speak to Matt
and I rose to leave. “No, Mary, don’t go,” Matt pleaded.
“Stay with me while I hear what’s up.” The doctor looked
somber, glanced at both of us, then spoke the blunt truth.
“Matt, yesterday’s surgery was successful but I have to tell
you the gangrene has worsened in your other foot and we
won’t be able to save it. I’ve scheduled your second amputation for tomorrow morning. Sorry Matt.” The doctor
walked out quickly with his head bowed, leaving the two of
us in shocked silence.

into wasn’t as comforting as the one we’d shared the day
before but at least Matt wasn’t alone with his awful news.
Gradually he loosened his bravado and gave voice to layers
of feelings under his words: fear and doubt, confusion and
pain. He asked where God was in all of this and did his suffering have any meaning. There were many questions and
few answers but it was good to be real with it all.
Angie and I talked on the phone that night and I met her
in the cafeteria after Matt’s surgery. She spoke with relief
and exhaustion saying the doctor told her it went as well
as could be expected. Matt even spoke a few words to her
in the recovery room before falling back to sleep. So it
was with stunned disbelief that I was awakened by Angie’s
phone call and message the next morning. “Mary, Matt
died. His heart just couldn’t take any more. I wanted you
to hear it directly from me. Thank you for being with him
on his last long walk. You’ll never know what that meant to
him, or me.”t

How long was it before Matt managed a few choked words?
Then, as if talking himself away from the edge of a cliff, his
voice started tenuously and then gathered strength. “Well
I always wanted to be taller, you know. Now I’ll have two
prosthetics and can be as tall as I want. Wouldn’t that be
something? I could be six feet tall if I wanted to be. It might
take me a little longer to learn to walk, but I know I can do
it. I’ll just keep trying until I can.” The silence we lapsed

57

POETRY

Jerry Hauser

Elegy—“I Can Almost See and Hear You”
Where have you gone?
My dear wife, Sue?
To heaven? To God?
“Soon I’ll see my sister, Laura and Aunt Liz,
Uncle Charley and my father too,”
you murmured from the bed where
you would die shortly after.
And I believe now that you are with them
and with many others beyond
the few you mentioned.
With them now, all of you together
and gazing into the lovely face
of easy laughter . . . Forever.
And I can almost see and hear you—
Beckoning, calling to me from some
other country cleansed with peace;
Washed with marriages and births,
Baptisms and grandchildren.
I wish that in your last days (even hours)
I would have . . . could have . . . given you more
comfort and gentle conversation.
We should have talked more —
I should have made that happen.








But the hour is not too late,
Everything is just commencing.
I am moving toward you, Sue,
Reaching for you to put
our hands together
and soar forever into
Eternity with each other
and with many others
Toward the face of God.

I will be there soon —
Please wait for me.
I will be there
in only a moment . . . .

58

Rae Rose

Biscotti
at 34, you lean against the wall
without your cane
and tell me what to do.
I make the sound of an eggbeater
as I mix the butter and sugar with my hands.
You laugh.
We relax.
This isn’t that moment,
that MRI
the lesions looked like blooming.
We sing.
As you look to the ceiling,
out of your lungs —
the perfect pitch. I follow.
II
Blood—what did you try to open?
I help you put on Band-Aids,
bruises like coffee stains on your legs.
A hole below your knee
as if someone put a cigarette out on your skin—
I know the look on my face when our eyes meet.
I try to change my expression,
but you saw it.
III
You dip biscotti into chocolate.
We place them on wax paper,
they look like a fleet of war ships.
Our chocolate melts poorly or burns.
“If only we had a gas stove,” you say,
“if only we had more control of the heat.”
The new diagnosis is in.
Doctors say the MS will only get worse.
Standing on your own,
your curvy body in the kitchen light,
if only I had more control,
if I could stop time
it would be here,
now, here—
please, stop here.

59

POETRY

Rita Maria Martinez

The Literature of Prescription
—Live as domestic a life as possible . . .
and never touch pen, brush, or pencil as long as you live.
(Charlotte Perkins Gilman describes Dr. S. Weir Mitchell’s advice, 1913)
This is what the doctor prescribed.
Perhaps she trusted him because of the paternal
eyes, well-groomed beard and commanding stethoscope.
Praised by Freud, females flocked to Mitchell’s
sanitarium. He was a renowned rest cure expert.
She a thwarted activist, an ambivalent wife and despondent
mother. Perhaps Perkins thought she needed to relent.
Surrendering the juggling act and handing
over the reins initially comforting.
Next month, tomorrow, right now irrelevant.
Acquiescence her new best friend, a silent partner,
an ally persuading her to abandon plans for saving
the world, coaxing her to ignore the calendar,
ditch the wrist watch, draw the curtains.
~ ~ ~
Keeping the blackout curtains drawn
and lingering in bed a little longer
a temptation one always faces during days
of endless rain in the Sunshine State
where neighboring streets threaten
flood, humidity swallows all rational thought,
and the barometric pressure, flighty tramp, forces
the right side of my head to throb like an expectant
cock. Stormy days I yearn for the clichéd return to womb,
desire to exchange one form of solitude
for another, to swap an imperfect quiet for a restful silence.
Instead, I insert earplugs to muffle the impertinent
downpour and settle for the bedroom’s embryonic darkness
while my husband inhabits the library’s calm pallor.
~ ~ ~
A medical librarian, my husband researches
new treatments hoping to discover a therapy
that will extract the ache from my head
the way tweezers remove a splinter.
Versed in the language of pain, the vernacular
of chronic daily headache (CDH) infiltrates

60

the mundane: sumatriptans, ergotamines, NSAIDs,
MAOIs, serotonin syndrome, rebound headache.
Mornings my husband prepares a vitamin cocktail
of milk thistle, fish oil, feverfew, B6, B100, and butterbur.
He deposits the capsules inside a pillbox labeled
breakfast, lunch, afternoon, bedtime. Before grabbing briefcase
and coffee cup and vanishing into the congested city,
he places the pillbox on the kitchen counter like a valentine.
~ ~ ~
An unlikely valentine, I down the pills
to ward off the frequency and severity of CDH,
classified as experiencing 15 or more days
per month with headache. A rare breed, CDH patients
are wired with a hyperexcitable cerebral cortex,
with abnormal control of pain neurons in the brainstem.
The body is duped into believing pain normal.
Cells are held hostage by the choreography of an infinite loop,
the headache cycle akin to a needle stuck in a record’s groove.
At onset pain is a malevolent presence searing the scalp
every second, a hot poker pinching the neck,
forceps continually clamping the temples.
Chronic headaches torment an unfortunate 4 to 5 percent
who are immune to most meds.
~ ~ ~
I’m immune to Topomax, Percocet, Frova.

I have a greater chance of getting buzzed
off the scent of shampoo than from OxyContin.

Because of our bodies’ stubborn resistance to meds
many female patients are written off as psychosomatic
or hysterical. My own Weir Mitchell, my first neurologist
proposed a creative remedy for my malaise.

Head cocked, seated on his big leathery chaise,
the physician gave me the once-over, then soberly
proclaimed I needed a boyfriend. He must’ve envisioned my
vagina dilapidated and at the mercy of cobwebs.

Did anyone offer similar counsel to C.B.?
Her letters mention facial neuralgia, disenchanted days
bedridden, head throbbing, wind howling across desolate moors
~ ~ ~
Brontë’s head throbbed as wind howled across desolate moors.
She suffered acutely when winter gales buffeted Haworth.
Primitive migraine remedies included ingesting
arsenic, citric acid, brain duster tablets,

61

and Wolcott’s Instant Pain Annihilator
(two of its known ingredients opium and ethyl alcohol).
Ads for Wolcott’s syrup depict a man besieged
by demons: the headache demon sits on the forehead,
one leg perched on each brow, a pair of neuralgic
demons jab at teeth with pickax and pitchfork.
At times Brontë pushed past this discomfort,
channeled lambasting pain into pristine prose.
Perhaps she would’ve been more prolific without
migraine—without Robert Southey’s infamous advice.
~ ~ ~
The poet laureate’s infamous advice reminiscent of Mitchell’s:
The daydreams in which you habitually indulge
are likely to induce a distempered state of mind,
& in proportion as “all the ordinary uses of the world”
seem to you “flat & unprofitable,” you will be unfitted
for them, without becoming fitted for anything else.
Literature cannot be the business of a woman’s life,
& it ought not to be. The more she is engaged
in her proper duties, the less leisure will she have for it….
Charlotte Perkins Gilman renounced the rest cure,
regained her wits, and wrote The Yellow Wallpaper.
Charlotte Brontë followed Southey’s admonition selectively,
writing as a means of soothing the mind & elevating it—
which is also what he prescribed.
Notes:
The poem title “The Literature of Prescription” is taken from the title of an
exhibit provided by The History of Medicine Division of the National Library of Medicine. The exhibition, The Literature of Prescription: Charlotte
Perkins Gilman and “The Yellow Wall-Paper,” examines a nineteenth-century writer’s challenge to the medical profession and the relationship between
science and society. The exhibit consists of six free-standing graphic panels.
Charlotte Perkins Gilman (1860–1935) was an American sociologist, novelist, writer of short stories, poetry and nonfiction, and a lecturer for social
reform. She wrote her semi-autobiographical short story, The Yellow Wallpaper, after a severe bout of postpartum depression
Robert Southey (1774 –1843) was an English poet of the Romantic school,
one of the Lake Poets, and poet laureate for thirty years.

62

BIOGRAPHICAL NOTES

Barbara Astor is both a poet and artist. She is the author of
two poetry collections published by Finishing Line Press:
Thirty Years Past (2011) and High Into the Blue (2013).
Astor has a visual disability resulting from a birth defect.
As an identical twin, she values the individuality writing
affords her.

Julie Guirgis, from Sydney, Australia, is a freelance writer
and full-time caregiver for her father who has dementia.
Her articles and personal stories have appeared in Signs
of the Times (May 2015), Vibrant Life (September 2015),
Significant Living (May 2014), and Creation Illustrated
(September 2014).

Deserét Baker is fluent in English, Spanish and learned
American Sign Language after her daughter lost her hearing due to spinal meningitis. She now teaches and interprets
ASL. She has written an essay and humor piece for Writer’s
Digest as well as an essay for Full Grown People, an online
magazine. Baker’s disability is bi-polar II. Writing helps her
contend with emotions.

Debbi Simmons Harris is a caregiver, and writer, published in Existere Journal of Arts and Literature (Fall 2014/
Winter 2015), Penmen Review (September 2014), and
Salon.com (September 2011). Harris’ physical disability
was the result of a surgical error. Her son was born prematurely with multiple disabilities and medical issues. She is
a staunch advocate for more positive responses to patients
from medical, educational, and social systems.

Glenda Barrett is an artist, poet, and writer. Her poetry
and essays are widely published and her artwork is online
at Fine Art America. Her poetry chapbook, When the Sap
Rises, was published by Finishing Line Press in 2008 and
one of her paintings was published in Bread and Molasses
Magazine. Her disability is a form of muscular dystrophy,
Charcot-Marie-Tooth Disease.

Jerry Hauser is a retired college professor. His poetry has
been extensively published in BACKSTREET, The Moon
Journal, Tar Wolfe Review, Free Verse, and Pearl, to name
only a few. Hauser is living with late-middle stage Alzheimer’s but he is still able to read his poems publicly and be
published in many media formats.

Lynsie Mae Buteyn started Bridges to Patient Empowerment, a nonprofit that helps empower and inspire people
who are chronically ill and have disabilities. She writes for
nonprofits and other organizations/publications that help
convey the experience of having a disability in a positive
light. Her disability is congenital dysautonomia, an autoimmune disorder.

Sandy Olson Hill’s poetry and flash fiction have appeared
in Red Paint Hill, Spec Journal, Blaze Vox, and Word Gathering. She has received the Academy of American Poets
Prize and the Open Door Short Fiction Award. Hill has
osteoporosis which has led to many injuries and surgeries.
She supports social justice concerns, environmental issues
and progressive policies.

Simon Hardy Butler has fiction pieces published in Beyond Centauri (July 2010) and Godlen Visions Magazine
(July 2010). He describes his disability, OCD, as “…both a
blessing and a curse. It’s a constant presence in my life, informing my editorial work because of the need to check and
recheck for errors. I owe much of my professional skill and
expertise to its influence.”

Mary Dyer Hubbard taught elementary school and is now
a certified chaplain and licensed professional counselor.
She says, “I have encountered many people with disabilities
who have touched me deeply along our shared journeys.”
Hubbard received 1st Prize in the May 2011, Echoes of
the Right to God online writing contest for her poem “The
Dance.”

Yuan Changming, an eight time Pushcart nominee and
author of five chapbooks, grew up in rural China. She began
learning English at nineteen and published monographs
on the subject of translation before moving to Canada.
Changming currently edits Poetry Pacific with Allen Yuan
in Vancouver, and her poetry has appeared in journals and
anthologies in thirty-seven countries.

Nadia Ibrahim has cerebral palsy and lives in Rockville,
Maryland with her current service dog, Cooper. She shared,
“Outside of my day job as a senior policy advisor for the
federal government, I enjoy reading, writing, traveling,
spending time outside, and any food with chocolate. Faith
and family are very important to me.”

Gail Eisenhart’s work has appeared in The Centrifugal Eye
(Summer 2015), Adanna Journal (November 2015), Alive
Now (April 2013), and Flood Stage, an anthology of St.
Louis Poets, 2010. Eisenhart was a runner-up for the Mary
Ballard Chapbook Prize. Her work has been influenced by
family and friends affected by disability and aging.

Jennie Chapman Linthorst founded LifeSPEAKS Poetry
Therapy, providing people of all ages with guidance and
insight through expressive writing. She works with clients
across the country and around the world. Linthorst is the
author of two books of poetry produced by Cardinal House
Publishing, Silver Girl and Autism Disrupted: A Mother’s
Journey of Hope, chronicling her first years as the mother of
a child with special needs.

63

Richard Luftig is a Midwesterner now living in California.
He is a recipient of the Cincinnati Post-Corbett Foundation
Award for Literature and a semi-finalist for the Emily Dickinson Society Award for Poetry. His stories have appeared
in numerous magazines: Bloodroot, Front Porch Review,
Broadkill Literary Review, and Pulse Literary Magazine.
One of his short stories was nominated for a 2012 Pushcart
Prize.
Rita Maria Martinez is a Cuban-American poet and a
Brontë scholar. Her poetry awards include an honorable
mention in AWP’s Writer’s Chronicle and a Pushcart Prize
nomination. The Jane and Bertha in Me, to be published in
2016, revamps Charlotte Brontë’s Gothic heroine and the
poems revive Brontë’s infamous madwoman and explore
the challenges associated with mental and physical illness.
Martinez has a genetic neurological disorder, chronic daily
headaches.
Joan Mazza worked as a medical microbiologist, psychotherapist, seminar leader, and has been a Pushcart Prize and
Best of the Net nominee. Author of six self-help psychology
books, including Dreaming Your Real Self, her poetry has
appeared in Rattle, The MacGuffin, Mezzo Cammin, and
The Nation. She also creates fabric and paper art.
Lola Neff Merritt is retired. She has been writing poetry
for many years and her poems have been published in numerous magazines and journals, most recently in The Almanac for Farmers & City Folk, The Gem, Mature Living, and
Salesian Missions Magazine. Merritt has limited physical
mobility due to severe lumbar stenosis, arthritis, and neuropathy.
Erick Mertz is a writer and social worker. His essays and
poetry have appeared in Spectrum Magazine (2015), Baldhip Magazine (2015), and Fireweed Poetry of Western Oregon (1998). He has worked with people with disabilities
since high school, and finds connections and inspiration
from working with his clients.
Michael S. Morris’ poems have been published in Prairie
Schooner, Plainsong, Iodine, and Haight Ashbury Literary
Journal. He was nominated by the Worcester Review for
the Pushcart Prize in 2012. Morris was awarded an honorary membership in the International Writer’s Association,
and his chapbook, A Wink Centuries Old, was featured in
Minotaur Magazine.
James B. Nicola has written or contributed to poetry collections and books related to the arts. One of his poems
appeared in Southwest Review in 2015, and he has received
three awards for his poetry: the Dana Literary Award, the
Willow Review Award, and the People’s Choice Award
from Storyteller. Nicola was his mother’s primary caregiver
for the last two years of her life.
64

Sandy Palmer studied graphic design at The University of
Akron and is a freelance artist working in colored pencil,
marker, and pen and ink. She contributes to Kaleidoscope as
the writer of visual artist profiles, having joined the staff as
art coordinator in 2002. Palmer is a full-time graphic design
specialist at United Disability Services.
Rae Rose is assistant managing editor of the San Diego Poetry Annual. Her poetry and essays have been published in
Cicada Magazine, Lilith Magazine, The Paterson Literary
Review, and the San Diego Review. Rose has bipolar disorder and also survived a stroke. Her book, Bipolar Disorder
for Beginners, was published by Garden Oak Press in 2013.
T. L. Sherwood’s fiction has appeared in Best New Writing
(flash fiction, 2016), The Chrysalis Reader Patterns (2013)
Rosebud (Winter 2013), and Thema (Spring 2011). She was
awarded the 2015 Gover Prize and won the Writers’ Journal
2008 Science Fiction/Fantasy Contest.
Nancy Scott’s eighteen years as a social worker has informed and inspired aspects of her writing. Four of her poetry collections are: Running Down Broken Cement (Main
Street Rag, 2014), Midwestern Memories (Aldrich Press,
2013), One Stands Guard, One Sleeps (Plain View Press,
2009), and Down to the Quick (Plain View Press, 2007).
Mary Langer Thompson has contributed to the anthology
Voices for Diversity and Social Justice, published by Rowman and Littlefield. Thompson’s awards include: a 2015
Nominee for the Jack London Award, Senior Poet Laureate
of California, 2012, and a finalist for Indie Excellence Book
Awards for Poems in Water. Thompson’s husband has myasthenia gravis.
Mike Traber is retired. His poems have appeared in several publications, including Passager (2002) and Ariel XX
(2001). Traber’s disability is impaired balance and he is also
legally blind. He says “I am a native New Yorker of German descent, who tries to keep his mouth shut and his ears
open to other people, their speech and their cultures.”
Katherine Westermann is a freelance writer living in the
U.S. and China. Her fiction has been published in Chrome
Baby, Issue 34, an online magazine and her poetry in Wilde
Magazine, Issue 3. She shared “…I could not have written
this piece without my younger brother. His disability prevents him from reading and understanding my writing, but
he will always inspire me and my work.”
Gail Willmott received a B.A. in English and a M.Ed. in
education, both from the University of Illinois. A Kaleidoscope staff member since 1982, Willmott became editor-inchief in 2003.

Grant Manier, Tom the Gentle Giant, 2014, Eco-art, 34” x 48”

Grant Manier, Brothers, 2015, Eco-art, 18” x 36” each

Related Interests