Documentos de Académico
Documentos de Profesional
Documentos de Cultura
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 Desert Baker
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
16
Nadia Ibrahim
Gail Willmott
22
Changing Faces
FEATURED ESSAY
6
Julie Guirgis
28
FEATURED ART
Turning Obsession into Art
32
Sandy Palmer
Erick Mertz
FICTION
A Year in Iowa
10
38
56
Richard Luftig
POETRY
For the Love of Rudy
26
Healing Hands
44
Katherine Westermann
Men of Science
50
Michael S. Morris
T.L. Sherwood
1
15
December
24
Winter Rose
25
James B. Nicola
At Arms Reach
20
31
Glenda Barrett
21
41
November Twilight
Joan Mazza
42
Mike Traber
It Is Taking
49
Biscotti
59
Rae Rose
Autism
43
My Disappearance
43
Octobers Show
A Gathering of Geese
Lola Neff Merritt
Med-time
52
47
53
48
The Blind
48
Wishbone in Moonglow
53
54
Yuan Changming
Jerry Hauser
BIOGRAPHICAL NOTES
Barbara Astor
Childhood Secrets
58
60
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.
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.
EDITORIAL NOTE
Gail Willmott
POETRY
FEATURED ESSAY
POETRY
Michael S. Morris
Michael S. Morris
FICTION
A Year in Iowa
Richard Luftig
inter
Kyle listened for signs of life but heard only
the hiss and pop of the coffee maker that he had
turned on. Sarah hadnt 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 poundswhich made her even more
depressedand 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 hadnt 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 didnt 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.
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.
But that wasnt 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 childrens 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 didnt want to push things. Better to let her make the
first move.
He called up the stairs, Sarah, Im 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
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. Were 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 youd realize how bad off we are.
He shook his head. Weve had problems with the farm before and got through them. Well do it again.
Her look softened. The real reason is I cant take this anymore, my life a combination of cleaning, folding clothes,
making supper, and trying to be upbeat when you come in.
Its killing me.
He tried to make a joke. You havent been that successful
on the upbeat part.
She didnt smile. Yeah, maybe not and Im sorry. She put
her hand over his and he remembered why he loved her.
12
But Im going nuts here. I feel like if I dont get out, try
something new, Im going to explode. I cant breathe in this
life.
He wanted to embrace her, let them both have a good cry.
But he couldnt move.I need you here to help run the
place he said. The kids need you, too.
It will be fine, she said. Im 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. Ill 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. Im not abandoning
you.
There was an issue Kyle didnt want to bring up, knowing it
would aggravate her. But he took a breath and said, Honey,
you havent worked since the year after we got married.
What makes you think youre going to be able to step right
in and do it now?
Sarah got up quickly, almost toppling her chair. Now were
getting to it, arent we? Youre worried that Im not up to it,
that if the pressure gets too tough, Ill go off my rocker, and
youll 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 wasnt 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 vacationanywhere would doas
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 Sarahs 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 didnt 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 farmers 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 didnt 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.
She kissed his lips. Her breath tasted sour. Youre wonderful, she said, but you know as well as I do that we cant
do that.
Why?
Mom said it was all right as long as we were quiet, Steven, the eldest, protested.
13
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 didnt 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 others
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 Sarahs 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 couldnt afford
the time off, but hed 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
I shall
wash them (tomorrow)
then give them away.
(Maybe later.)
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.
15
PERSONAL ESSAY
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 Id 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
couldnt 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 independentlyit did
not define me.
16
19
Glenda Barrett
At Arms Reach
In the hospital
after my fathers 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
didnt always share his thoughts.
Life has taught me well.
In hindsight after my diagnosis,
I came to a clearer understanding.
I found myself saying, Ive got it.
Ill handle it.
Like my father before me,
a strong, independent person,
I couldnt seem to help my behavior.
My greatest need was to hold tight
to what control I had left.
20
POETRY
Gail Eisenhart
21
PERSONAL ESSAY
Changing Faces
Julie Guirgis
22
23
POETRY
James B. Nicola
December
Briefer days approaching briefest now:
December, and shes 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 glistenafter
Night, at dawn, and after storms, in calm
Of dates, a phrase, and remembrance to adjust
My aspect, barely noticeable, but
Thereherefor the rest of my devoted days.
And whenever the spring to follow this
May comenow, 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 youve never seen
a winter rose, just come and meet my mom.
Yellow? Pink? Red? White? Violet!all of these
shes loved, or been, season after season:
becoming whiter now, but still theres blood.
Her cheektouch!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, liveseddy 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, hell 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
26
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 boys 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.
Shed 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!
Rudys 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 theseso 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 dont need to be in a restaurant, you need to be on a diet. Youre
a cow. This was her husbands mantra.
He repeated it with religious fervor,
usually reclined and balancing an
ODouls and a sloppy cheeseburger on
27
PERSONAL ESSAY
Yet I have it, and its played a huge part in my relationshipsfor better or (mostly) worse. I often wonder how I
even got married. Why my wife, Trudi, loves me. But thats
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.
Fateor, more likely, the cursorled me to Trudi.
We shared a common interest in not wanting to be run over
by the rapid stream of strollers careening down Manhattans
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 Zabars, of course,
only a few blocks from my childhood home on West End
Avenue, where my parents still live. Then we headed to Edgars, a desserty, Poe-inspired caf 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
So that conversations still up in the air. What isnt, however, is my recognition that Im not the craziest guy in
town. During the recent Passover holiday, which we divided
between my family and Trudis, the question arose at her
sister Ruths house if everyone, as part of the Seder ritual,
had washed their hands.
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.
POETRY
Glenda Barrett
31
FEATURED ART
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
Manier was fifteen years old when he sold his first coolage.
It was an angels 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 Maniers
revenue comes from art prints and products including calendars, notecards, and books.
The artist says, I have many favorites because theres
something about each piece that has meaning but there are
two that are close to my heartThe 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 mermaids 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 doesnt 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.
35
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 doesnt 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
Grant Manier
37
PERSONAL ESSAY
38
40
POETRY
Joan Mazza
November Twilight
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 moments 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
III
I wake to rewind
the Talking Book Machine squeals
while its cassette runs backwards
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.
42
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.
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 sons life
is choreographed on center stage.
My silence holds possible dreams
of a normal life
with family vacations, car trips,
and time not scheduled.
43
FICTION
Healing Hands
Katherine Westermann
44
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 Simons 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.
Its 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, thats Ricks new catch phrase. Simon got agitated, thats 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 couldnt stop him. Two orderlies barely
managed to stop him, and she tells me that shit happens.
After a long pause she says, Hell be glad to see you. Its
been too long.
He wont 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
46
POETRY
Octobers 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 summers wear,
still peek out among falls weeds.
One gold lily yet blooms on a dying bush,
and tiny, wild daisies grace the rhubarb
plot.
Beside tall, dead spectres that were
summers 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:
Dont 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. hes good-hes good to me.
Fees and copays,
doctors, nurses.
You say youll 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
youre 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
50
51
The door to the kitchen opened. The sound that came out
wasnt nearly as powerful as it had been earlier. He stood
near the rear bumper of his Grandmoms 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 youre learning geometry.
When Tyrone didnt answer, the man continued. Im
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 didnt say so.
Now your Grandfather, hes 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 dont we go on in. Its 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 hadnt drawn one of the shapes. He held out
his hand.
Im sorry I havent been here in a long time, Tyrone.
Tyrone just stared at the mans fingers. The man turned and
walked toward the kitchen door. Tyrone followed him. He
didnt understand why, but tears started to run down his
cheeks. Maybe that was biology.t
52
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 wont 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
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
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 bones 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
55
PERSONAL ESSAY
is wife was my hairdresser, Angie. Brash and compact, transplanted from the streets of South Philly
and proud of it, she cut peoples hair with flair and
attitude. For the longest time I couldnt 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 Id
forget he was there until Angied interrupt her own animated staccato to pull him in with a softened voice, Didnt 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 shed 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 didnt 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 Angies request: Matt,
Honey, would you get that for me? I gradually became
aware that when Matt got up, hed 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,
cant 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? Id feel so much better if I knew you were with him
beforehand.
Sure Angie, Ill 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
Id seen Matt by himself without Angies 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 dont
want to lose my foot, Mary. Ive held off surgery for so long
and it just got too bad. Now its either my foot or my life, so
I guess its 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 Ive really enjoyed having you all these years and Im
gonna miss you when youre gone. I sure liked walking
with you, running, and skiing, and dancing. Yeah, Im really
gonna miss dancing with Angie. We were something on the
dance floor. I guess its almost time for me to say good-bye
to you, Foot. I wish I didnt have to because youve 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, Ive 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, dont go, Matt pleaded.
Stay with me while I hear whats up. The doctor looked
somber, glanced at both of us, then spoke the blunt truth.
Matt, yesterdays surgery was successful but I have to tell
you the gangrene has worsened in your other foot and we
wont be able to save it. Ive 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.
57
POETRY
Jerry Hauser
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 isnt 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
Bloodwhat 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
60
61
62
BIOGRAPHICAL NOTES
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.
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.
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. Its 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.
63