K

Number 74
ALEIDOSCOPE
EXPLORING THE EXPERIENCE OF DISABILITY THROUGH LITERATURE AND THE FINE ARTS

Winter/Spring Online 2017

The Evolution of Inclusion

"The Devil's Grip" by Casey Robb

"The Lost Year" by Grace Lapointe

"Everyone Deserves a Turn" by Bert Edens

"Chromosome 17 and the State of Mutual Trust" by Alisa A. Gaston

K ALEIDOSCOPE
Winter/Spring 2017
Number 74

EXPLORING THE EXPERIENCE OF DISABILITY THROUGH LITERATURE AND THE FINE ARTS

Contents Reinventing the Wheel 54 Chromosome 17 and

and the State of Mutual Trust 32
Barbara Ridley
Alisa A. Gaston

The Complete Works

EDITORIAL NOTE of Min-Ju Kim 62 Go Fish 49
To Include or Not to Include 4
Tristan Tavis Marajh Andrea Carlisle
Gail Willmott

Just One of the Moms 82 A Profound Teacher in Disguise 52

FEATURED ESSAY Marlaina Cockcroft Carol Keegan
So I Think I Can Dance 6

Melanie Reitzel Cleaning 66

Memorial Day 98
Lois Soffer
Kelly Brown

FEATURED ART
An Artist at Heart 44 Jays Pawfect Pal 70
The Slipping 100
Sandy Palmer June Capossela Kempf
Katie Booth

FICTION Letting Go, with Love 74

Louder Than Words 102
The Devils Grip 10 Tammy Littlejohn
Celeste Bonfanti
Casey Robb
The Day the Lights Went Out
at Kellogg Bowl 85
The Lost Year 20 PERSONAL ESSAY
Erick Mertz
Everyone Deserves a Turn 27
Grace Lapointe
Bert Edens
A Walk and a Talk
Howd You Meet Your Wife? 38 Brothers Defeat Willowbrook 88
Not His Circus,
Con Chapman Not His Clowns 30 Allan B. Goldstein

Phyllis H. Moore
1
Listen to the Children 91 Learning Disability 51 Regarding the Previous Ease
of Doing Two Things at Once 81
Stephen J. Bedard Katie Rendon Kahn
Mary Ellen Talley

Please Give Us a Call 93 Dress-up 61

Scoliosis 81
Tamar Auber Nancy Scott
John Smith

Whats Your Stand-Up About? 96 The Good of a Thing 69

Triple Feature 92
Paulina Combow Visiting 104
Sean J. Mahoney
Michael Mark

POETRY To My Eyes 94

Lady of the Manor 18 The Sixth Child 73 From My Eyes 95

Fierce Love 18 Paul and Cheryl 105 Mary McGinnis

Glenna Cook Nancy Scott

Dentist Appointment 106

May All Your Children My Cousin, His Cerebral Palsy,
His Tattoos 73 Judie Rae
Be Gymnasts 19

The Healer 19 Ron Riekki

Liz Dolan
REVIEW
One Animals Healing Power 60
The Space Between Us 75
Allison M. Loose
Senses 29 Transformations 76

Jessica Goody Mary Doyle Johnston

ARTICLE
Arm 31 Seeing and Hearing Differently 78
Failed, 1959 77
Cathy Bryant Sarena Tien
When I was Six, 1962 77

Letter: April 11, 1962 77

Hallucinations 37
William H. McCann, Jr. BIOGRAPHICAL NOTES 107
Yuan Changming

Handmade Kites 80
my name is Adam 43
Blair G. Sweeney
Randy Martin

2
 Kaleidoscope (ISSN 2329-5775)
is published online semiannually.
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We request credit for publication as

follows:
Staff Previously published by
Kaleidoscope: Exploring
the Experience of Disability through
PUBLISHER Literature and the Fine Arts,
Howard Taylor, President/CEO 701 South Main St.,
United Disability Services Akron, OH 44311-1019

EDITOR-IN-CHIEF Indexed in Humanities International

Gail Willmott, M.Ed. Complete and the MLA International
Bibliography non-Master List. Listed in
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ART COORDINATOR
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HONORARY EDITOR
Phyllis Boerner

MANUSCRIPT REVIEW PANEL Kaleidoscope, beginning in 1979, pioneered

Fiction Review the exploration of the experience of disability
Mark Decker, Ph.D. through the lens of literature and fine arts.
Fiction, personal essays, poetry, articles,
Bloomsburg University
book reviews, and various artistic media
Bloomsburg, Pennsylvania including two-dimensional art, three-dimen-
sional art, drama, theater, and dance are
Poetry Review featured in the pages of various issues.
Sandra J. Lindow
University of Wisconsin-Stout This award-winning publication expresses
Menomonie, Wisconsin 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 stereo-
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tudes about disabilities.

3
EDITORIAL NOTE
To Include or Not to Include
T
he theme of Issue 74 of Kalei-
doscope is inclusion. Just as
the terminology used to refer
to persons with disabilities continues
to evolve (crippled, handicapped,
disabled, challenged) so do opin-
ions and strategies related to how peo-
ple with disabilities should be educated
and integrated into society (special
education, integration, mainstream-
ing, inclusion). Many years ago,
parents often kept their children with
disabilities hidden at home. Then came
the segregation of special education
classes where children with various
disabilities were grouped together in
one classroom with little or no contact
with normal children. That was the
era in which I grew upthe era of non-
inclusion.
While I always enjoyed school, espe-
cially anything to do with reading and
English, looking back, I feel that as
special education students we perhaps
were not as rigorously challenged
academically as we might have been.
Being in a special education program
meant that habilitative therapies (physi-
cal, occupational, and speech) were
included in the regular school day.
Through fourth grade there was also a
mandatory one half hour rest period. So
you can see that much of the day was
taken up by requirements other than
academics. I remember taking material
4
Gail Willmott
home each day to make up for what I
had missed because of being pulled out
of the classroom once or even twice
daily for physical and occupational
therapy sessions. Yet, I obviously did
learn something not withstanding all of When it came time for me to apply
that disruption.
Busing special education students out
of their school districts was the way of University, and Notre Dame College
things before busing became a larger of Cleveland (which was my first
political and racial issue. This usually
meant getting to school later than the
other kids and leaving earlier which
also effectively disallowed participation
in any extracurricular activities before
or after school. I sometimes wonder
if that lack of interaction fueled my
preference for more solitary activities
such as reading, listening to music, and
watching movies. To this day, I am a
bit of a loner and large group activities
are never my first choice. On the other
hand, are those characteristics an inher-
ent part of my personality regardless of
circumstances?
The great irony in my particular situa-
tion was that junior high school was the
time when special education students
began to experience some integration
with their normal peers. What a time
to begin that process, since those junior
high/middle school years are often
miserable in any case. In high school,
I attended regular classes and the bus-
ing situation remained the same. Again,
looking back, I have to believe the
powers that be were doing what they
thought was best in implementing this
type of educational strategy, as awk-
ward and disruptive as it was.
to colleges in 1966, I submitted ap-
plications to three schools in the area:
The University of Akron, Kent State
choice at that time). Times being what
they were, I received three responses
which were essentially the same: You
certainly have all the necessary aca-
demic qualifications, but as you are in
a wheelchair, you would not be able to
successfully navigate this campus.
Then a friend of mine who was a
speech therapist with a significant dis-
ability, told me about the University
of Illinois, Champaign-Urbana. She
told me that the university had begun a
program in 1948 to meet the needs of
injured veterans returning from World
War II who wished to use their G.I.
benefits. Over the years, the program
was expanded and by the 1960s was
made available to students who could
successfully complete a week of func-
tional assessment by the staff of the
universitys Rehabilitation-Education
Center. My first reaction was Why
would I want to go there? The answer
was clearif I wanted to attend col-
lege that was my only real choice at the
time.

By the time I graduated in 1973 with
a masters degree, the education of the
next generation of students with dis-
abilities was beginning to undergo sig-
nificant changes. With the authorization
of the Education of All Handicapped
Children Act in 1975, and its amend-
ment in 1997 as the Individuals with
Disabilities Education Act (IDEA),
children with disabilities were given
the right to an education among their
typical peers in the least restrictive
placement, popularly referred to as
mainstreaming. Being mainstreamed,
students had to demonstrate that they
were making progress and not falling
behind because of being placed in a
regular classroom.
Inclusion is the latest nomenclature
referring to the process of bringing
children with disabilities together with
their non-disabled peersreplacing
the terms integration and main-
streaming. Inclusion is a broader term
which, while not disregarding academic
achievement, places more emphasis on
the psychological and social benefits of
all children participating and learning
together. Inclusion, if correctly under-
stood, should encompass much more
than education. It is intended to foster
the growth and development of the
whole person, allowing children and
adults with disabilities to fully partici-
pate in all aspects of community life.
Inclusion means more than just specific
accommodation as outlined in sections
of the Americans with Disabilities Act
(ADA). Some experts point out that
while accommodation can be legislat-
ed, inclusion must evolve naturally as
a result of acceptance and the willing-
ness to see past the disability, to see the
whole person. I believe that being given
the opportunity to make real choices
regarding education, employment,
social/recreational activities, and wor-
ship/spiritual expression in accordance
with individual abilities and desires, is
a basic human right that should always
be honored.
The inclusion movement also means
more opportunities for adults with dis-
abilities to participate more fully in the
life around them. Individuals are being
given real choices in terms of housing,
employment, and recreation. We have
moved from segregation and depen-
dence to facilitating choices for in-
volvement in accordance with potential
and personal preferences, with the goal
of broader participation in the larger
community. For those who are unable
to transition to completely independent
living and employment, there are group
homes and supported living as opposed
to institutions, and programs to provide
opportunities to be a part of community
life in terms of volunteer and social/
recreational activities.
Around the country sheltered work-
shops are being closed (for good or ill)
with the intention of moving more and
more people into community employ-
ment. For workshops that continue to
exist, there is a new emphasis on pay-
ing a fair wage, for work done. As I
see it, inclusion means providing real
and meaningful choices for full partici-
pation in the community and respect-
ing the choices that people make for
their lives. This is equally, if not more
important for those individuals who,
because of cognitive impairments, need
ongoing support in negotiating daily
activities.
With Issue 74, because we received
such a wide range of submissions
touching on various degrees of inclu-
sion, I was able to expand the number
of works included here. As usual we
have personal essays, fiction, a book
review, and some poems that address
the issue of inclusion from various per-
spectives.
There are essays in which parents re-
count their efforts to provide common
childhood experiences that would not
occur without intentional effort: Lis-
ten to the Children, and Everyone
Deserves a Turn. There are essays
about young people moving out into the
workforce: Cleaning and Letting Go
With Love. We have some works that
discuss major changes that adults have
had to embrace: A Walk and a Talk
Brothers Defeat Willowbrook, and A
Profound Teacher in Disguise. Our
featured essay is, So I Think I Can
Dance. In this piece, Melanie Reitzel
recounts how she set her own standards
regarding inclusion.
In fiction, we have two stories in which
young adults take matters into their
own hands in order to expand and en-
rich their lives: The Devils Grip and
The Complete Works of Min-Ju-Kim.
We also have an excellent example of
how not to be inclusiveThe Lost
Year. Reinventing the Wheel, is a
story that recounts a situation in which
one would definitely not choose to be
included.
Compiling Issue 74 proved to be an
engaging challenge for me, and I sin-
cerely hope you enjoy delving into the
subject of inclusion.t
5
FEATURED ESSAY
So I Think I Can Dance
I
was in my Directed Writing teach-
ers office and had just unlocked the
knee hinges on my leg brace and
sat down when my cell phone went off
in my bag. Id forgotten to turn it off so
we could work uninterrupted: fifty min-
utes every three weeks is precious time.
The first dozen or so notes of the ring
tone sound the dead-give-away two-
note, back-and-forth bounce of Dance
of the Sugar Plum Fairyand Toni
cracks up. Then I crack up because she
gets it that I downloaded this synthe-
sized little ring tone of syncopated situ-
ational irony on purposeIm the next-
to-last person on the planet who will
ever dance the Sugar Plum Fairy dance.
Never in the history of anything will
you witness any tour jets performed
by this sixty-two-year-old, post-polio
person in a tutu and a brace unless Luis
Bunuel comes back from the dead to
direct one more surrealist flick. Never.
But when I was four, I gave ballet a try
and God bless my grandmother for let-
ting me.
I dont know why my Grandmother
Willie, so called because I couldnt
say her last name, Wilson, had a bal-
let book for children on hand for me.
I dont know why she had it, but she
did; perhaps it was part of my familys
6
Melanie Reitzel
way-ahead-of-their-time Lets let her
try and if she falls shell learn to set
her own limits approach to mainstream-
ing. Imagine ice-skating. Third grade,
watching a friend take her lesson, I
stepped out, carefully onto the ice,
holding the rail, not wearing skates but
my tan and brown saddle shoes. Gave a
little push with the good leg, slid about
two feet and just, barely grabbed the
rail in time to prevent me from doing
the splits. OK, so, no ice-skating.
Tennis, when I was thirteen. My dad
had strung up a practice net at the
house he and my stepmother were rent-
ing for the summer. Well, Kid, we can
give it a try. He hits the ball to me,
within my long-armed reach and I hit it
back. Then he hit it to the other side of
the court, and I got about a step toward
it before it bounced past me. OK, no
tennis, either.
At swimming, I wasnt quite a star, but
could swim every stroke except the but-
terfly: the whipping-the-legs together
part of the kick doesnt work when one
leg refuses to listen to the commands
of the brain. A whole bunch of those
spinal cord nerves went deaf when I
was two-and-a-half. The left leg trails
along because its attached, but doesnt
coordinate, synchronize, or push. And
not much diving. Trying to spring off
the board resulted in a mid-air flail as
if Id been thrown off a roof, and it set
Dads Newfoundland, Josh, whod been
hovering at the edge of the pool the
minute I crawled up on the board, into
a wave-making dive of his own. Some
dogs have a way of anticipating trouble
in the water. And if the fall hadnt
convinced me, two hundred pounds
of drooling, paddling Newfoundland
headed my way on a rescue mission af-
ter I landed was an effective deterrent.
Baseballgood swing. May I have
a designated runner, please? Volley-
ballas long as the other five team
members filled in for me, I could hold
my own. Great at serving, very long
arms. Well, arms not so long, really,
just proportionately shorter legs, thanks
to the growth-stunting virus. Square
danceMr. Isola called the dances; I
put the records on the phonograph and
watched my classmates allemande left
and promenade. Hopscotchpretty
good, actually. I was good at that stand-
ing on the hopping leg and leaning over
to pick up the marker business because
Id learned from the age of three to de-
pend on the good leg for balance.
Jump ropeterrific at holding the rope.
Swingsno problemI pumped cross-
legged, my right leg supporting my left,
my long arms enabled me to stretch
out; I could lean further back than most
other kids could. Kick the cangive
me a little extra time to hide, count to
one hundred fifty, and when I throw a
rock in the bushes to distract you, and
youre off investigating the noise, Ill
limp into home.
Think drunken, dizzy
great blue heron in
repeatedly thwarted
take-off attempts and
youve got the visual.
But before I tried all those things, I
tried ballet at four. Id been wearing the
brace for all of a year-and-a-half after
contracting polio in 1950. I walked
stiff-legged with a locked ankle so my
dance repertoire was going to be lim-
ited.
Any choreography that depends solely
on waving my arms and bouncing on
one leg while slowly hop-spinning,
however, I can manage. Think drunken,
dizzy great blue heron in repeatedly
thwarted take-off attempts and youve
got the visual.
I studied the ballet book with Gram
and worked on mastering the basic
positions. Arm positions: a breeze.
Foot positions: with a very loose left
hip joint I could easily, albeit slowly,
bring my heels together and point my
toes east and west. That was position
one. Position two: same thing, the heels
farther apart. Easy peasy, just give me
a moment. Position one to two, inclu-
sive? Mastered. But after that, I was
grabbing the barin my case, the edge
of Grandmothers mahogany drop-leaf
dining room tableor I was swaying
and falling. And we hadnt even tried it
yet with music. No Sugar Plum Fairy
role in my future.
Grandmother Willie had taught school
ever since she was widowed when my
mother was six, my aunt nine. She
taught high school science in Pittsburg,
California. You only had to see her
once, firmly girdled beneath her hand-
made dress or suit, her laced black
heels, sitting up so straight in her we-
spoke-German-at-home posture. Seeing
her sit beside her claw-footed dining
room tablelegs crossed, arms folded
over her ample bosomwas all you
needed to see to know why she never
had any disciplinary problems in that
rough refinery town north of Berke-
ley where she taught school. Rookie
teachers used to come to her classroom
whenever theirs got rowdy. Mrs. Wil-
son would order her class to shelter in
place while she marched into the room
of miscreants-in-training and informed
them: Were not going to have any
of that going on in here. Gram didnt
need to reference her pronouns; she fig-
ured the students knew quite well what
they were up to. She knew the differ-
ence between naughty and stupid.
Gram taught me how to cook, sew,
knit, crochet, and how to make soap.
She taught me that fresh tar could be
chewed like gum. That cloves and cin-
namon made perfectly good breath
fresheners. I learned to recite: By the
shores of Gitche Gumee, By the shin-
ing Big-Sea-Water, and she let me try
ballet.
She also let me try to fly. Peter Pan
was my favorite storyI dreamed of
flying, defying gravity, moving freely
in the dark air nearly every night. I was
obsessed and I think Peter Pan quali-
fies as my first crush. I wrote the name
Wendy in all my books, and I was so
convinced that I could fly with Peter
that one morning, after a sleepover at
Grams, I announced that I really could
fly. And in the way four-year-olds have
of mixing up reality and fantasy, I be-
lieved I could and told her so and told
her I could prove it. Gram took her seat
in her chair by the table, assumed her
show me the evidence, I have a sci-
entific background pose and watched
me climb onto her couch. Watch me!
I said as I held out my arms. And then
I flapped my arms and flew off the
couch.
Right onto the floor.
I couldnt tell Gram it hadnt quite
worked like Id planned because I
couldnt talk. And I couldnt talk be-
cause I couldnt breathe. My chest
wouldnt move. I looked at her in wide-
eyed panic.
You just knocked the wind out of your
lungs, Gram said, not moving from
her chair. Youll be all right.
She was right; I was. Compared to
7
permanent paralysis, this was pretty
small potatoes. So, for the rest of my
childhood, I tried whatever my friends
did, I slid down the dry-grass hills of
Orinda on flattened cardboard cartons,
got into mud bomb fights with Patty
Winquist and the Smyth twins, went
to camp, went horseback riding with
the Girl Scouts and, as a result of
this extra wear and tear on the brace,
spent a lot of afternoons after school,
or Saturdays, in the orthopedic repair
shop. Downtown Oakland, Telegraph
Avenue. So long ago that neither my
mother or I can remember the name of
the shop. Mom, I think its called Lau-
rence Orthopedic I said when I called
her last week. I dont think thats it,
she said. Considering the amount of
time we spent there, its driving us a
little bit crazy not to be able to remem-
berwere both getting older.
But we remember the mural on the
wall because we sat under it, reading
our books or magazines, waiting to be
called back for repairs or modification
to my appliance. I hated that damned
mural. Heres why: viewing from left
to rightframe one: crippled people
hunched over canes, stuck in wheel-
chairs, dark forms, lost, purposeless,
miserable in their grim landscape.
Frame two: workmen hammering out,
stitching up, bolting together braces,
artificial limbs. Much like the required
scene from any old West movie or TV
show. Clang, clangcamera three pans
to the town blacksmith. Frame three:
we Gimps, we happy Gimps, just one
appliance-aided step closer to nearly
able-bodied, are all walking (you cant
detect the limp in a still shot) forward
in the light. Its a metaphor; its a
sales job. Three stainless steel rivets
are practically as curative as a trip to
Lourdes.
My dad was an ad-man: driving back
and forth from Orinda to San Francisco
to spend weekends with him, up and
down various Bay Area freeways, hed
point out which were effective adver-
tisement, which were not. I was aware
of some of the techniques of image ma-
nipulation. Looking up at the mural in
8
the brace shop, I questioned its motives
at onceI can sport the whitewash of
false hope inherent in cures from a
mile away, let alone thirty feet. And the
blackwash that portrays someone in
my spot as pathetic and forlorn because
I needed a couple of metal uprights
and cross bars to get from point A to
point B isnt any better. I didnt much
fancy being cast into the valley of the
shadow of death every time I cracked
a sidebar or popped a rivet. I was grate-
ful for the brace, but I didnt want to be
the subject of a mural. I didnt want to
be used as agitprop.
posters took their toll. They played
After handicapped, we
were disabled.Then we
were challenged.
One more societal
whitewash and were
headed down the slider
toward irked.
I didnt understand that term, then,
of course, but I understood how I felt
when I looked at that mural. I said so
to Mother who understood fifty years
ago how mainstreaming and sensitivity
influenced language. While in favor of
mainstreaming, she saw it as a necessi-
ty rather than a balm to the conscience.
You know, Melanie, you used to be
crippled. Then you were lame. Now
youre handicapped. Pretty soon
youll be inconvenienced. She wasnt parents or grandparents mouths except
far off the terms have been diluted even
further. After handicapped, we were
disabled. Then we were challenged.
One more societal whitewash and were
headed down the slider toward irked.
I will cop to some hypersensitivity
when it comes to exploitation of image.
March of Dimes posters are primarily
to blame for that. Originally formed to
collect funds to be used to fight polio,
the Dimes first posters focused on the
deliberately pity-inducing images of
children with braces either in wheel-
chairs or on crutches. If, somehow, they
could have found a child who wore
braces and used a wheelchair propelled
by crutches, they would have made her
the permanent poster child. And while
the dimes collected as a result of those
torn heartstrings did help fund polio
vaccine research, for which I am, do
not get me wrong, very grateful, those
upon the image of victim. Pity is not
what is needed. A person with polio, or
anyone with a handicap, disability, or
inconvenience, needs a grandmother
and a ballet book and the opportunity
to decide for themselves what their
physical limits might be, and how to
navigate their life with those limits and
their strengths in mind. I think of my
physical restrictions much the way I
think of the sonnet form. Limitations
on form can help eliminate detractors;
a whole host of failures are eliminated.
As any good poet will tell you: creative
possibilities abound within boundaries.
And then my grandmother taught me
how to read. And my family let me dis-
cover what I could do as well as what
I couldnt. After the birth of my first
child I told them of my mid-labor A-
hah! Moment: I want to be a maternity
nurse. None of them said I couldnt do
thatthey asked me to which school I
was going to apply. Come to think of it,
I dont think I ever once heard, Mela-
nie, you cant do that come out of my
when it came to curfew in high school
or going out to play before I cleaned
my room on Saturdays.
They had the same attitude toward
my having a career as they did ballet.
Youll need to do something to earn a
living, and we trust you to figure out
what you can do and what you cant.
Thirty years ago I learned I could be a
pretty good nurse. Now Im learning
how to be a better writer than I was a
ballet dancer.
Recently, in the elevator at the hospital
where I have worked now for nearly
thirty years as a maternity nurse spe-
cialist in lactation, a physician and I
shared a ride to the second floor. As I
stepped into the elevator I caught his
eye. Or rather, my limp did. He stared. I
suppose his clinical curiosity made him
forget his manners. He was probably
running the diagnostic algorithm in his
head, Lets see, thats a permanent ap-
pliance, its lock-kneed, therefore: un-
stable quads. Pretty good hip-swing but
thats compensatory for the paralysis.
Legs slightly unequal length, torso a bit
tall for the frame, stunted leg growth
with compensatory surgical shortening
of the unaffected limb at the epiphysis:
bingo: gotta be polio. Damn, dont see
too many of those these days . . . .
I thought I detected a self-congratula-
tory smile on his face as I got off the
elevator and headed toward the mater-
nity ward where babies mouths were
open, their heads turning, signaling to
their nervous new mothers it was time
to be fed.
Doc, I wanted to say, in a measure of
self-congratulation equal to his own,
you only saw the part of me that you
think doesnt work so good, when Im
in a patients room with a mother and
her crying baby who need to be taught
first and second position, in position
and latch, boy howdy, you should see
me dance.t

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
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9
FICTION
The Devils Grip
Casey Robb
R
usty Serrano woke with a jerk, sweating, writh-
ing, gasping for breath. Again, that damn dreama
baby squeezed in a vise, in a grip, too smothered to
scream. He steadied his breathing. The first morning rays
of West Texas summer sun were flooding the room, cast-
ing flickers of lilac and crimson through the crystals on his
dresser, blue calcite and rosy quartz.
Last night, hed heard his moms keys jangling as she came
in late from her job at the caf. He knew she would sleep in.
His older brother Tate would be up any minute for his job
at the car shop. Rusty, 19 and out of school, had no job, no-
where to go. At least not today. But he had a plan.
He pulled out the bottom dresser drawer and fingered the
papers hed brought back from Alpine and hidden under his
jeans. He hadnt told anyone. Not his mom. Not even Tate.
Especially not Tate.
He listened for dishes clinking in the kitchen. Silence. Good,
no ones up.
Rusty had cerebral palsy. One of those baby birthing things.
Couldnt get out. He never got why. Was he not allowed to
be born or something? His legs jerked this way and that, but
his hands were steady and his mind was sharp: and another
blessinghis good looks, with his black hair, blue eyes, and
lean physique.
Rusty pulled on his jeans, hoisted himself off the bed, and
walked down the hall to the kitchen on two legs that carried
him like clumsy stilts, his arms sweeping the air for bal-
ancelike swimming . . . or drowning.
10
He opened the back door. The desert heat rolled in. He
caught a glimpse of the lazy semi-rural roads of Marathon,
his small, stifling town. Aptly named, too, Marathonmy
life.
He glanced down the hall, pulled one of his moms Coors
from the fridge, and downed half of it. C-Cant let T-
Taaaate see this. His CP put a twist to his tongue, to his
lips, pulling out his words like Silly Putty. M-Mr. Perfect
T-Taaate.
Tate, with his dark brown hair and eyes, his easy smile,
looked just like their dad. Or so hed heard. He only knew
his dad from photos and storiesstories about his dads
drinking, his lost jobs, his fights.
Then baby Rustys diagnosis had arrived: cerebral palsy.
That must have been the last straw for the coward, Rusty
often thought. He up and ran, like a chicken gizzard. Not
even a trickle of kid support from the bastardnot from the
bank and not from the heart.
Rusty chugged the last half of the cold beer. He heard foot-
steps. Too late.
Rusty! Tate yelled. What the hell are you doing? Put that
beer down.
N-Not your b-buuusiness!
Thats Moms beer.
Sh-Sheee said I could have sooome.
Its mine too. I pay the bills, dont I? Tate was a mechanic
now, helping his mom who could barely cover the rent. And
I say you cant have it.
W-Waaatch me, Rusty said, and chugged two more gulps.
At breakfast? Geez! What a lush. How are you ever going
to get a job?
I-Ill get a job. You just waaatch. Ill do better. Ill get a
careeeer.
A career? Are you nuts? You barely finished high school.
Y-Yeah, but
But nothing. Put the beer down and go back to bed, you
stupid drunk.
The beer can went flying and hit Tate on the side of the face.
Tate lunged at Rusty and wrestled him to the kitchen floor.
Rusty grabbed at Tates leg and Tate shook him off. You
brainless baby, Tate yelled. Mamas boy.
Rusty lay on the floor cradling a bruised elbow. Tate headed
for the door. Forget breakfast, Tate said. Im going to
work. And dont expect me at dinner. Ill be at Sissys. Tate
always had his arm around some girl, though lately it had
just been Sissy. Tate slammed the door behind him, revved
up his motorcycle and took off.
Rusty pulled himself up on a kitchen chair, balanced on his
legs and shook his fist. B-Bastard, he yelled. Im g-going
tonight. To the desert. N-Not j-juuust to the d-desert. T-To
the cave! And youre c-coming too, T-Taaate.
* * *
That evening, Rusty drove his pickup to Sissys apartment
hoping to surprise them. Tate had rigged Rustys old truck at
the shop with a steering knob and a joystick hand pedal: push
to go, pull to stop. Rustys legs were useless for driving, but
his hands were deft. He veered the truck to the left into the
parking space by Sissys front door, then jerked the joystick
forward, screeching the brakes a little just for fun.
Uh, oh. He noticed empty beer cans on the floor and tossed
them behind the seat out of sight. He slid out of his truck and
felt the folded paper in his back jeans pocket, then knocked.
Sissy opened the door.
Hey, Rusty. Whats up? She stood smiling at him. Stun-
ning, Rusty thought. He couldnt help but stare at her tousled
dark blond hair, laughing blue eyes, and curves in all the
right places.
Sweet. Like Sandra, in Alpine yesterday. In the library, hed
sat at a table across from two girls who were moving their
hands in a rapid rhythm like a salsa dance, like a rumba.
Theyd glanced at him and giggled. One girl had flipped
back her brown hair and, with her finger, drew a circle
around her face, then slid her palms together and pointed at
him. Rusty shrugged and shook his head. She pulled a pencil
and paper from her purse, wrote a note, and pushed the paper
to him. It said, face nice = handsome. Then, Wow! Below
that, shed written, Sandra. He looked up and she pointed
to herself. She reached across the table and patted his hand.
Her touch felt silky, like a cool desert breeze in the heat of
the day. Then shed glanced at her watch, given him a wink,
waved bye to her friend and left. No one had ever called him
handsome before. Certainly not in sign language.
Sweet, he thought again, still staring at Sissy who stood lean-
ing in the doorway. He broke his gaze and glanced away.
The TV blared from the living room. Sissy yelled behind her,
Tate, its your brother.
Tate shouted from the couch over the TV noise, What
the . . . Before Tate could get off the couch, Rusty leaned
toward Sissy, close enough to inhale her scent, like a blue
sage blossom. He whispered, H-Hey, S-Sissy. You wanna
g-go to a c-cave?
What do you mean? A real cave? she asked. Awesome.
When?
L-Like, n-now. Rustys voice felt tight, trying to sound
casual.
Tate joined her at the door. A cave? You got to be kidding.
We have to work tomorrow.
11
Oh, please, honey, Sissy whined, her lips in a pout. Its
early.
At night? Tate shot Rusty a glare.
Come on, baby, she murmured, stroking Tates cheek.
Out there under the stars. Then she leaned to him and
whispered, My caveman. Tate rolled his eyes.
* * * gestured out to the sandy basin. I dont care how cool the
They squeezed into the front seat of Rustys truck and
headed south on a remote desert highway, in silence, for
miles. The sun hung low in the west. Tate grasped the win-
dow ledge and wrapped his left arm around Sissy who sat
wedged in the middle. Rusty watched in the mirror as she
smirked, then kissed and nibbled on Tates ear, whispered
to him with that voice like molasses, and murmured, again,
My caveman, as if Rusty wasnt there, as if he didnt have
feelings like other guys.
Tate just stared ahead, didnt even answer Sissy. He didnt
have to, Rusty thought. Tates cool, the ladies man. Tate
answers to no one.
Finally, Rusty veered off the road and jounced his pickup
down a dry sandy arroyo and into the creosote flats as
the summer sun disappeared behind the crusty peaks of
the Santiago Mountains. Dusty pinks and blues emerged
along the jagged eastern horizon. Rusty spotted the distant
high mesa with its sloping red ridge. He swerved the truck
around a cluster of prickly pear cactus and slowed, then
flicked on the headlights and weaved a path among the
mesquite trees and the spiky cholla. Rusty dodged a rocky
outcrop, then jerked on the joystick to pick up speed.
Jesus, Rusty! Tate yelled. I didnt rig this truck for you
to get us killed. Use that stick slow and easy! Rusty felt his
face flush. Whats gotten into you lately? Tate persisted.
Just cause you got your own wheels now, thanks to Mom.
Must be Easy Street being the baby of the family, Tate
went on.
Im n-not the b-baaaby, Rusty said.
Well, you act like it. If she only knew how you drove.
Man, the stuff you get away with!
Rusty stared out at the jagged landscape, his jaw clenched.
He gripped the wheel and veered around a big barrel cactus.
On every bounce, Sissys thigh rubbed against Rustys leg,
but neither she nor Tate seemed to notice. Rusty glanced in
the rear view mirror at Sissys blue eyes, at the purple cloi-
sonn barrette that barely hung on to her flaxen hair flutter-
ing in the dusty wind.
12
Near the high mesa, he headed for a rocky butte, wrenched
the brake and skidded to a stop by a lone juniper a few
yards from a rocky outcrop. Tate held onto the window.
Sissys hands flew out to brace herself on the dash. She let
go a stifled screech, then laughed.
Where are we? Sissy wrapped her arms around Tate.
Rustys favorite hang-out, the middle of nowhere. Tate
cave is, desert is boring.
Rusty glanced in the rear view mir-
ror at Sissys blue eyes, at the pur-
ple cloisonn barrette that barely
hung on to her flaxen hair fluttering
in the dusty wind.
N-no, its not b-boring. Rusty reached into his back jeans
pocket and fingered the folded paper. Good, its still there.
Look. He pulled a piece of violet amethyst crystal from
the side pocket of his blue jean jacket. He handed it care-
fully to Sissy. She rolled it in her hands and offered it to
Tate, who looked away.
Besides, you could get hurt out here. Tate brushed the
dust off his jacket. The wilds of West Texas is no place for
a kid with crippled legs. Its just you and the buzzards. And
for what? A bunch of stupid rocks? Jesus!
Y-You caaant tell me whaaat to do. Rustys throat tight-
ened.
Like hell I cant. Somebody needs to.
Rusty didnt answer, just glared at Tate.
Rusty stepped down from the truck, grabbed a flashlight
from behind the seat, hung it on his belt, and walked around
the rocky butte with that spastic, jerky gait he hated, his
arms flying in a snappy motion for balance.
Tate and Sissy got out and followed him, the volcanic cob-
bles crunching underfoot. A bloody glow had settled on the
land. At the base of the butte, almost invisible behind the
spiky leaves of a towering yucca, an earthy hole gaped like
a small, private wound.
Oh, my God. Sissy groaned.
Thats no cave, Tate said, standing back. Thats a rat
hole!
Rusty tossed the flashlight into the hole, gathered his legs,
slid them in, and pushed till the rock felt like fingers clos-
ing on his waist. He felt the sweat break out as he shoved
himself deeper inside, until he was sitting in a small granite
room the size of his bedroom. The ceiling hung low, within
reach. The cold musty scent of damp soil penetrated his
lungs.
No. Rusty took a deep breath. He leaned toward Sissy
and paused for effect. I w-want to b-be a geologist.
A geologist! Tate almost shouted. Oh, come on! You
barely squeaked by in high school!
And why n-not? Rusty yelled.
Because youre not a college egghead. Thats why not.
They g-got claaaasses in Alpine, Rusty said. Then he
looked away and mumbled, and g-girls. . . .

Rusty flicked on the flashlight. Tate, then Sissy, squeezed Girls? What do you mean, girls?
through the entrance and scooted over to join him. The
granite walls were rough, and speckled black and gold. He I m-met one at the college. In Alpine. S-Sandra.
darted the light beam around. Shadows rose and lunged
along the walls.

Wow! Sissy squealed. A real cave. She touched the

ceiling. I cant believe it.
This is the Devils Porch, Rusty announced. Found it m-
myself. B-But wait till you see the D-Devils Grip. Rusty
shone the flashlight under his chin, making a ghoul face.
Rusty took a deep breath. He leaned
toward Sissy and paused for effect.
I w-want to b-be a geologist.

Give me that. Tate took the flashlight and peered around.

Youve been down here alone? You couldve gotten stuck.
Oh, my God. Now its girls? What will you come up with
For days. Killed! For a bunch of rocks!
next?
No. N-Not rocksrhyolite, mica, limestone. L-Look.
Sissy broke in. Aw, Tate, come on. Thats sweet. He can
Rusty placed his palm on the wall. T-Touch it. He took
have a girlfriend if he wants.
Sissys hand and set it against the dark rock. Thats g-
granite. Its igneous rock. R-Rough. L-Like a mans b-beard
This is outrageous! Tate insisted, waving Sissy aside.
in the morning. H-Here. Rusty guided Sissys hand to his
You dont know him.
chin and moved her fingers gently across his thick, black
stubble. She allowed the touch for a moment, then withdrew
Just b-because you didnt get into c-college! Rusty burst
her hand.
out.
Its what-neous rock? Sissy ran her finger tips along the
Tate . . . . You applied for college? Sissy stared at Tate.
wall.
You never told me that.
Igneous r-rock, from ignitef-formed by fire.
So? It was stupid. Thought I wanted to be an engineer.
You know, design stuff. Tate turned his head away in the
She smiled at him in the dim light. How come you know
shadows.
so much about caves and rocks and stuff?
No, no, no. Not stupid! Sissy insisted. So what hap-
Rusty grinned. C-Cause theyre so cool. B-Besides, I have
pened?
a s-secret. He shifted his body toward her. Y-Youll be
the first to hear it, you and T-Taaate. I havent even told M-
Mom, or anyone.

So, what is it? Tate asked impatiently. You found an-

other crystal?

13
Tate shrugged. Sul Ross. In Alpine. Got on the waiting list.
Pre-engineering, they called it. He clenched his fist. But
couldnt wait. Had to start mechanics school. Mom lost her
job and couldnt make the rent. So I withdrew my applica-
tion.
Sissy shook her head. Well, shes working now. Maybe
theres still a way.
Naw. . . Tate hesitated. Besides, Im not a college egg-
head either. Tate turned to Rusty and glared at him, clench-
ing his jaw. But if I cant get in, you sure as hell cant!
Tate, hon, Sissy added, Cant he study too? Hes sharp
as a . . .
Sissy, you stay out of this! Its not your business!
Sissy rolled her eyes and crawled off with the flashlight.
Y-You think Im n-no good for nothing, d-dont you?
Rusty demanded.
Of course youre not no good. But be realistic. Tate shook
his head. Girlsjeez. What do you have to offer a girl?

Y-You go to h-hell! Rusty and Tate glared at each other in

the dim light.

Y-You think Im n-no good for
nothing, d-dont you?
Rusty demanded.
Oh yeah? W-Well, whats this? Rusty yanked the folded
paper from his back pocket, snapped it open, and threw it at
Tate. An application. And Ive still got t-two days to g-get
it in. He felt glad of the dark, which concealed his shaking
hands.
Hey! Sissys voice came from the far end of the cave.
Whats that? Sissy aimed the light at a small hole. It
looks like a tunnel.
I t-told you, Rusty said. Its a whole nother r-room. But
theres n-no way you can g-get through there. He pointed
to the hole and cleared this throat loudly. That is the D-
Devils Grip.
Oh, cool. Sissy stuck her head into the hole and looked
down the tunnel. Oooh, you think theres skeletons in
there? You know, like old miners and stuff? Bones and
picks, and . . . whoa . . . maybe gold?

Besides, college costs money, if you didnt know. Lots of
it.
They g-got scholarships. And l-loans. And work study j-
jobs.
Work and study? Ridiculous! Then go ahead, Tate yelled.
Fall on your face.
Tate, honey, Sissy broke in. Why couldnt he just
Dont coddle him, Sissy. Hell get his hopes up for noth-
ing. Like that stock boy job. After that fell apart, he moped
for months. Dont let him fool you, Sissy. Hes a dreamer.
Yeah, but . . . dreams are . . . Sissy began.
Of course not, Tate said.
Lets see. Sissy tossed the flashlight down the shaft, then
pushed her shoulders through, and squirmed and pulled till
she disappeared into the Devils Grip. Hey, Im in. Her
muffled voice echoed up the tunnel. Its creepy in here,
like a dungeon.
Damn you, Sissy! Hold on! Tate followed her into the
hole, cramming his shoulders in, then sliding and twisting
till he, too, vanished into the hole.
Rusty began to sweat thinking of Tate and Sissy being
squeezed, being gripped in a vise. Whisperings, like my
caveman, seemed to float from the tunnel, like mumblings
from the underworld.

Look, he doesnt have to worry. Mom and I can take care
of him. We always have and we always will. Then, turning
to Rusty, Tate added, Okay, heres my offer. Ill see if they
can use you at the shop. You know, errands, or something.
Office work. Filing maybe. That will keep you busy and
away from your pipe dreams.
After a while, Rusty heard scrapes and groans. Then Tate
emerged from the dungeon, inch by inch. Sissy pulled her-
self through the hole, sat up and tucked in her shirt.
Tate crawled to the exit. Were out of here.

14
Wait, Sissy said, pulling her hair back. Hey, wheres my
barrette? My purple barrette. Damn! She felt around on the
ground. It must be in the dungeon.
Cant go back now, Tate said. He crawled out of the cave.
Lets go.
But dang. Its special. Sissy scrambled out of the cave.
Rusty crawled out close behind her. They followed Tate to
the truck, the gravel crunching under their feet. My best
friend gave it to me, Sissy whined.
Your BFF? Tate teased. Man. Its just a barrette. He
opened the door.
He would go to Sissy, open his
palm, and there it would bethe
lovely cloisonn, its gold border
glistening.
Rusty slid into the drivers seat and tossed his flashlight
on the floor. Sissy scooted onto the passenger seat on her
knees, and got a glimpse of the empty beer cans piled be-
hind the seat.
Whoa, she murmured. Tate stood behind her at the door.
Sissy turned to him. Tate, sugar, can you see if I left my
purse back in the truck bed.
Tate stepped away. Sissy grabbed Rustys shirt and pulled
him close. Rusty gasped in surprise. Rusty, hon, she
whispered. I see those beer cans. A whole pile of em.
Sweetheart, that aint gonna get you nothing. What about
your caves and your crystals? What about your mom? And
Sandra? And all the other Sandras out there waitin for ya?
Rustys face flushed.
Tate appeared at the door. Sissy and Rusty sat up swiftly,
facing straight ahead. Tate slid into the passenger seat next
to her. Didnt see any purse.
Whoops . . . found it. Sissy grinned, holding up her hand-
bag. Now, Tate hon, how are you gonna get me another
cloisonn barrette? She bought it in China.
Ill get you one somewhere. Tate sounded impatient.
Thats when the idea struck Rusty like a volcanic blast.
They rode home in silence with Sissy snuggled against Tate,
and Tate staring out the window. Rusty gripped the steering
knob, his head spinning. He knew now what he had to do.
He would retrieve the barrette. He would go to Sissy, open
his palm, and there it would bethe lovely cloisonn, its
gold border glistening. And Tate had to be there. Rusty had
to see his face. Surprise them both. Be realistic, Tate had
said. Well, Rusty would show them reality, a new reality.
He would go through the Devils Grip. He had to. Alone.
* * *
The next night, Tate was at Sissys and Rustys mom was
working late at the caf. It was midnight when Rusty laced
up his hiking boots, grabbed his flashlight and a six-pack of
Coors, slid behind the steering wheel and set the beer on the
floor.
He drove out to the sandy arroyo, parked by the lone juniper
at the outcrop, opened a beer and chugged it. He snapped
open another and downed it, controlling his breath, in and
out, slowly, to calm his nerves. Then he walked to the yucca
by the high butte under a star-studded sky.
Rusty felt full to bursting. He took a piss by the yucca.
Then he tossed the flashlight into the rat hole, slid into
the cave, into the Devils Porch, and crawled on the gravel
to the Devils Grip on all fours like a supplicant. The tun-
nel loomed before himan extended mawlonger than
he remembered, a ghastly six or eight feet. But it slanted
downhill. That would help. He felt the sweat break out. His
heart pulsed. A lump in his throat choked him. He thought
he heard a movement, a scurrying. What was that? he won-
dered. A rat? A snake? A rattler?
He inhaled deeply till his breathing slowed. Man, Im
thirsty. Wish Id brought that beer.
Grasping the flashlight, he reached both arms into the Grip,
jammed in his shoulders, and pushed with his feet, forc-
ing and squirming, sliding on pea gravel inch by inch. His
shoulders emerged on the other side. He was in! He was
really in!
Rusty pulled his quivering legs from the tunnel and sat up.
The dungeon was a small room with a low granite ceiling
that slanted down toward him, grazing his head; the slab
walls leaned in like a condemned building. He darted the
light around. Shadows danced along the walls, the flakes
of feldspar luminous like a shattered moon. He scanned the
15
reddish-brown dirt floor, found the scuffed out spot where
Tate and Sissy had been, and there it wasthe barrette, its
gold trim gleaming in the dirt.
He wiped the barrette across his jeans, watched it flicker
in the flashlight beam, then stuck it in his back pocket.
Yes, Tate, this is reality. Rusty Serrano is not no good for
nothin.
He scooted to the Devils Grip, eager to get out. He reached
into the tunnel with both arms, the flashlight tightly
clenched. He shoved and wriggled to cram his shoulders in.
But his shoulders didnt fit. They had to fit. The tunnel was
the only way out.
He tried again, forcing his shoulders and thrusting with his
spastic legs. Damn. Its uphill now. This time, the loose dirt
and pebbles worked against him, sliding him back down.
He pushed with his trembling feet and wormed his way up,
inch by inch, till he reached the worst bottleneck, his hands
reaching the outer ridge of the tunnel.
The Devils Grip seemed to close around his torso like a
cinch. He could go no further, his arms, his legs stretched
out, unable to push or pull. He twisted and wrenched with
his sweating hands, but couldnt dislodge his chest. The
earth had him in a vise.
The flashlight grew dim. He struggled and crammed his
body till his shoulders and hips were jammed in like a plug.
His throat clenched down on the rising panic. He pressed
again with his feet. Then his legs convulsed. The jerky
rhythms jolted his hips. They jarred his chest, his neck,
shaking free the sobs that had snagged in his throat.
H-Help me! he yelled to no one. The spasms grew stron-
ger. He heard screams, screams from his own throat, bounc-
ing back at him like a hammer. He felt a hand close tightly
around his middle. Then he knew.
The dream . . . the damn dream. He felt his body twist-
ing, writhing, gasping for air. The earth, the world, had
grabbed him, like a devils hand, a Devils Grip. Squeezing
him. Cramming him. Binding him. He couldnt breathe, he
couldnt move, he needed to scream . . . he needed to be
let-go-of.
Breathe, keep breathing. He took a slow breath. He imag-
ined a cinch, a binding cord wrapped around his ankles, his
knees, felt it coil and twine around his hips, his waist, pin-
ning his arms to his side. He saw himself walking, sleeping,
talking, with this cord cramming his parts together, jam-
ming him, pinching him, crowding him. All his life . . . yes,
he knew it . . . he could hardly breathe, his whole goddamn
life.
16
L-Let me go! he screamed, his breaths coming quick
and shallow. His shouts echoed back to him. Sweat poured
down his neck, sticky like blood. He pushed again. His
legs jerked and quivered, jostling him loose. His body slid
down till his feet hit the dungeon floor. Oh, G-God . . .
His spasms triggered again, shaking his thighs in a terrible
rhythm. N-No, he sobbed. L-Let go!
The flashlight went completely dark. Rusty shivered. He
licked his grimy lips, felt the grit in his teeth. The cave
smelled of blackness, of death. So, the Grip had won. Tate
had won. The world had won. He would never get out. This
was reality. He was helpless, his legs, his arms writhing out
of control. The dream was true.
No! he screamed, and shoved again. He sucked air
into his frantic lungs, heaved, and sucked. But the Grip,
the cinch, closed on his middle again, like a devil. Sweat
poured from his arms, his chest. His breath came in gasps.
He slid forward and reached till his whole hand grasped the
entrance to the tunnel. He felt another squeeze of the vise.
Im n-not no good for n-nothing! His words came crash-
ing back, echoes from the deep. Im a m-man! The words
pounded on his chest, his shoulders, pushing him, lifting
him. Rusty closed his eyes and inhaled a long breath. He
tried again, easing into the hole slowly, smoothly, squeez-
ing himself thin. His body slid forward an inch, then some
more. He tugged and inched his way till his fingertips felt
the far edge of the shaft. L-Let me g-go! he screamed.
Im a m-maaan!
No, no, no! Breathe like a man. Breathe deep. This time,
Rusty opened his lungs, inhaled again, and set his breath
free, felt it ooze out, like the bleeding of bile, till he was
empty, clear, drained. Im a man. He closed his eyes and
lay still for a long while. He imagined his home . . . his bed
. . . his crystals. He thought of Tate, how hed rigged the
joystick, and Tate, up early for work every morning, his
engineering dreams diminishing, year by year, like a missed
train departing in the distance. He imagined Sissy with her
sweet whisperings. And his mom, Mara, forever dragging,
tired, and alone. Rusty opened his eyes in the dark, feeling
thinner . . . lighter, as if floating, limp, loose.
He reached again to the edge of the tunnel entry, and wrig-
gled and tugged. His knuckles ached. He inched himself
upward, upward, with his calmer strength, dragging with
fingers, shoving with feet. He scraped his limp body along
the rocks. His elbows caught the edge and dragged, prying
his torso out. The granite tore at his jacket, ripping portions
of shirt away, scuffing skin. Streaks of blood and sweat
smeared across his chest till he was sliding out and out,
freefree from the grasp, the vise, the Devils Grip.
Rusty lay face down on the gravel in the Devils Porch, the
rocks rough against his chest and cheek. He slept a long
while, sucking sweet air into his lungs with the cadence and
calm of a newborn.
Finally, Rusty woke and crawled from the cave. He hiked
to the high mesa and up and up along a steep, rocky trail to
the flat crest on top of the world. He sat on a pile of broken
breccia, held his knees, and shivered with the beauty of
the vast midnight sky, the rich, ragged landscape he loved,
made more mysterious by a half-moon on the rise. He stood
tall, stretched his hands high, and breathed deeply, taking
in the scents of the desertpungent, bittersweet. Not bor-
ing, he said aloud.
Rusty fingered the folded paper in his jeans pocket. He
pulled it out, unfolded it and held it up in the moonlight.
The heading across the top read Sul Ross State University,
Admissions Application. In the dim light, he peered at the
line labeled Name where, tomorrow, he would fill in Mr.
Rusty Serrano.
Rusty pulled from his back pocket the cloisonn barrette.
He caressed the jewel, watched the purple, the gold, glisten
in the half-moonlight. With the application in hand, Rusty
hiked down the rocky trail with that jerky gait hed always
hated, and smiled. Im not drowning, he thought as he in-
haled the crisp night air deep into his lungs. Im not drown-
ing at all. Im swimming.
* * * over at Rusty. Tate snickered . . . he chuckled . . . then he
Just past dawn, Rusty pulled into a recycling center and
dumped his pile of empty beer cans, then headed to Sissys.
He banged on her door. The four remaining cans of the six-
pack dangled in plastic rings from his left hand.
Sissy appeared in a yellow robe, tying the cloth belt around
her. Hey, what are you . . . , she began. Rusty pushed past
her and walked to the kitchen table with Sissy following.
Tate stood at the counter stirring coffee, dressed in jeans
and T-shirt.
Rusty slammed the four beers down on the table. I d-dont
n-need these anymore, he said. Im d-done.
Rusty then pulled Sissys cloisonn barrette from his pocket
and tossed it onto the table where it bounced and clinked
and glistened as it settled among the breakfast dishes. Sissy
gasped. Tate stared at the barrette. Then Tate looked intently
at Rusty, his eyes blinking.
Rusty broke the silence. T-Tate. Youre c-coming with
me.
Tate smirked. Where the hell to now? The damn cave? The
Devils Grip?
Rusty walked to Tate and hooked his elbow. N-No. T-To
Alpine.
Tate shook him off. What for?
The d-deadline is t-today. They g-got night c-classes.
Night classes? Tate hurled his stirring spoon to the floor.
Goddamn you! He chugged his coffee. Persistent bas-
tard, arent you?
Tate grabbed his wallet from the table and stomped out the
door. Rusty followed behind, flailing with his jerky gait.
Sissy stood in the doorway, the corners of her mouth tilting
toward a grin. Tate yelled to her, Call work. Tell em Ill be
late! Tate slid into the truck and stared straight ahead, his
jaw clenching. Rusty slipped behind the wheel. Tate added,
Im just going for the ride. To help you out.
Rusty started the ignition. On the dashboard sat a chunk of
quartz, a crystal of lilac and rose. Rusty peered past Tate at
Sissy standing at the door. She gave him a nod and a wink.
Rusty yanked the truck in reverse and sped down Avenue
D toward the highway. Jesus, Rusty! Tate hollered. Use
that stick slow and easy! Youre gonna get us killed. Rusty
laughed out loud. What? Tate demanded. Tate glanced
burst out laughing, doubled over, till he was snorting spit.
Finally, he sat up and let out an audible sigh. Tate rubbed
his jaw and opened his mouth wide to relax his face. You
really think I can do this, huh?
Rusty swerved the truck onto the highway. You idiot!
Rusty answered, smiling. He rolled down his window, let-
ting in a rush of hot wild wind. W-What d-do you think?
Along the western horizon, the morning rays of Texas sun
were flooding the jagged landscape with dusty greens and
golds. The old truck shuddered and shook. The crystal
shimmered on the dash, casting shards of rosy light around
the cab. Tate lifted his hands to the sparkles and watched
them quiver and quake across his palms. Rusty jerked for-
ward on the joystick and gunned it for Alpine.t
17
POETRY

Glenna Cook

Lady of the Manor

Phyllis has invited everyone in her office
for lunch at her senior home,
where she has her own apartment.
She doesnt worry
that this might not be feasible.
She expects everything to fall into place.
I begin to make the arrangements.
Her boss agrees to a day,
and to allow a longer lunch hour.
I plan with the kitchen staff
a special menu for twenty extra people.
I take Phyllis shopping for Christmas decorations,
a small tree, a white poinsettia.
When the day arrives,
they all carpool across town.
Phyllis is the perfect hostess
queen for the day, lady of the manor.
All the staff at the home show her deference,
and in the dining hall, lunch is served,
as if it were a great banquet.
After her co-workers have eaten,
she leads them to her apartment,
neat and shining with holiday color.
Glenna Cook
Fierce Love
Most people perceived you as flawed.
Mother saw you as blessing.
Her fierce love, in your first months,
brought you past pneumonias peril.
She fed you goat milk and natural vitamins.
Mrs. Mann massaged you with her miracle hands.
You thrived.
Rather than hide you in the shadows,
she placed you at the heart of thingscenter stage.
At church gatherings, school carnivals,
there youd be, perched on her lap,
or atop Fathers shoulders,
curious gaze taking in a world
difficult to comprehend,
yet, one where shed always
make a place for you.

This is my couch, this is my TV,

this is my table, this is my bed . . . .
She lists each item with pride, as if to say,
I have a life, like you.

18
Liz Dolan

May All Your Children Be Gymnasts

Daughter, remember once I told you
anyone who could triple-back handspring
off a balance beam,
nail both feet without a bobble,
Liz Dolan
could tackle anything.

I asked how you knew

for that split second
The Healer
when you accelerated,
Four-year-old David who has Downs
throwing back your head, arching your spine,
snuggles into three-year-old Tommys chest
pointing your toes, your taut body circling
like a windmills wheel, where the beam was.
like a Maine coon cat. He pets Tommys head
flubs his lips on his pale cheek and laughs
You said, Spatial awareness, I guess.
with so much heart at the noise it makes,
Every time you lifted off
he warms ours. Even though he knows Tommy cannot
I, earth-bound,
closed my eyes lending you my sight.
move nor speak,
Now I watch you nursing
unlike us, he does not give up
your jet-haired boy who barely cries
who inhales oxygen through a cannula.
hope for him, maybe recalling
Your hand cradles his floppy head.
when he himself sipped air raggedly
I fear his life without flight
through a trach and could not pedal his trike
until I see him arcing in your eyes.
but how last night in falling twilight

he did.

Sadly, Tommy died in 2013.

19
FICTION
The Lost Year
Grace Lapointe
O
livia always had her long blond hair in a ponytail.
Even though we all wore the same uniform at my
new school, I thought her shoes and hair barrettes
seemed like the right ones to have. She rolled up her skirt
above her knees and always looked right at the boys and
made weird faces while she put on her ChapStick.
Mrs. Renault, the principal, had assigned her to guide me
around. That was exactly how shed said it: Olivia will
guide you around and help you get acclimated. Mrs. Re-
nault always wore colorful sweaters and a lot of makeup
and called everyone kiddo.
So, do I have to carry your books? Olivia asked me.
No, I can do it myself. I didnt want anyone to act like my
servant.
She didnt really have to do anything, just walk to class
with me and make sure I didnt fall. Im not sure what she
would have done if Id actually fallen, though. Most of the
classes were on the same floor, except history, which was in
the basement. There were no elevators, but the staircase was
narrow, so I could grab onto both railings at the same time.
It took me a long time to climb stairs, but I could manage. I
could do anything if I put my mind to it.
I was never sure what to say to Olivia. Shed ask me things
like, Do you know what a hickey is? Do you know what
oral sex is?
No, Id answer. Shed start explaining, but I thought She looked up from her correcting. Oh. Outside.
she must have been getting some of the details confused. I
started asking her questions about sex that Id never ask my
mom or look up on the Internet.
One day Olivia said, There was a girl who died here,
back in 1962. Before Father Duggan was here, when all
the teachers were nuns. She fell into the water bubbler and
20
drowned.
I laughed. Thats impossible. You cant drown in a bub-
bler.
Of course you can. You just stop breathing.
Besides Olivia, I didnt really know any other girls in my
class yet. The boys always said hi to me, though. Rob
held the door for me and sat with me at lunch. He liked to
mix different kinds of soda together until it made a disgust-
ing concoction. If he thought that would impress me, he
was wrong. I noticed he never offered to hold the door for
Olivia.
Dont talk to Rob, she whispered. He touches himself.
On my first Thursday at St. Agnes, I noticed all the other
sixth-grade girls were wearing white polo shirts and navy
sweatpants instead of their pleated skirts. I hadnt even
known that was an option. At the end of math class, the bell
rang, and everyone else stood up and started marching out
the doors. They moved in unison, like the cars on a train. I
couldnt even see where they were going. Where was Oliv-
ia? How did they all know exactly what to do? I felt almost
queasy when I realized that the runaway train was leaving
me behind.
Excuse me, I asked the math teacher. Where are we go-
ing?
OUTSIDE??? I repeated.
Yes, dear. Its gym day, she said calmly, as if I already
knew this. On the tour, I thought Mrs. Renault had told
Mom and me that gym was always in the auditorium.
I tried to follow the rest of my class, but I couldnt even see
where theyd gone. I wandered around the corridors, which
all looked exactly the same and were painted blinding
white. Every once in a while, there was a painting of Jesus,
but even those looked almost identical. I started to feel
dizzy, like I was walking in a maze.
I finally found the back door and realized that I was sweat-
ing and out of breath. In the distance, I could see everyone
running around in a park across the street. I stepped outside,
my legs shaking a little. I usually needed someone to walk
with me when I was outside and never crossed streets alone.
Then I noticed someone coming towards me. I hoped it was
Rob, but as the person got closer, I could see that it was a
girlOlivia. Had she wanted to go and find me, or had the
teacher sent her?
When Olivia walked across the street with me, I tried to
grip her arm for support. At least that was less awkward
than holding hands. My fingers felt clammy. I was trying
not to put too much pressure on her, but I felt her flinching
away, like she thought I was contagious. Dear God, send a
BOY next time! I thought.
Whats wrong with you? What are you doing? she almost
screeched, trying to run away from me.
Sorry Olivia, I know its weird, but I kinda need to hang
on, I explained.
But you can walk OK when were inside!
Yeah, I know. Its hard to explain. I have trouble with co-
ordination and long distances.
Maybe Father will let you skip gym.
I dont want to stay inside though. Id become a pariah.
A what?
You know, like an outcast.
She looked at me like I was some exotic animal with two
heads.
I stared straight ahead, not looking at her, like I was wear-
ing blinders. I tried to block out the noise of cars roaring by
and the feeling that gravity was pulling me down towards
the hard cement. I couldnt stop imagining being swallowed
up in the concrete and run over by cars. The image kept
repeating itself in my brain, like someone was rewinding a
videotape.
The rest of the class was playing soccer in a little grassy
area. There were no benches in this park, just a white-
washed statue of some saint or bishop.
Well, what am I supposed to do? I asked the gym teacher,
Mr. Richards. He was tall, kind of young, and had spiked
hair.
He looked surprised that I could talk. He smiled at me, talk-
ing very slowly, like he thought I had a mental disability in
addition to a physical one. Hi there. You can sit down in
the shade over there, OK? He pointed to a tree.
It was hard for me to get down onto the ground, so I leaned
against the tree, trying not to get dirt on my clothes. Why
hadnt I brought a book with me? I was so bored that I be-
came fascinated watching a little boy and his mother walk-
ing their hyperactive Jack Russell terrier down the street.
They stared back at me.
When we got back to the classroom, Olivia said to me in a
flat tone, Youre a lesbian. It wasnt a question.
Huh? No Im not.
Yeah, right. You were, like, grabbing me.
I just needed to hold onto something! It has nothing to do
with who I like.
Look at your hands.
What about my hands? Did they look like a boys? Had I
bitten a hangnail?
They say if your ring fingers longer than your index fin-
ger, it makes you a lesbian. Its because of your hormones.
Thats stupid. I kept checking my index finger just to
make sure it was longer.
Olivia wouldnt speak to me after that. She turned away
when I said hi to her. I overheard her telling the other
girls that I was a lesbian whod tried to molest her. From
then on, only the boys would eat with me at lunch.
21
I wondered if Olivia was the person whod stolen my jacket
the first week of school. I asked Mrs. Renault to tell Father
Duggan, but they never figured out who took it.
We can work this out, kiddo. You should probably go talk
to Father, Mrs. Renault said, with a big smile.
I was tired by the time we got across the street to the rec-
tory. The secretary met us at the door and told us Father
would be in momentarily. While I waited, I looked around
his office. There was an icon of Jesus, holding open his
cloak to reveal his Sacred Heart, which was bleeding and
surrounded by a crown of thorns. I could see the nail marks
in his hands and feet. I shivered. Id seen icons like this at
my grandparents parish, but the art at my church wasnt
quite this graphic.
Right then, Father Duggan walked in. Id only seen him
from a distance before. He had glasses and gray hair, and
he was much shorter and thinner than Id expected. He was
wearing regular clothes (civilian clothes, as Mom would
say), with his white collar poking out from his sweater. I
thought it looked out of place, like the time I saw my physi-
cal therapist at a fancy restaurant, wearing a dress, makeup,
and high heels instead of a T-shirt and sweatpants. Father
wasnt making eye contact with me, just looking past me
like I was invisible. I kept staring at the icon with its big,
mournful eyes instead of at him.
He said in a deep, musical voice, Good afternoon, TalEET-
Ha. What a beautiful name. Id never heard anyone pro-
nounce my name that way. It sounded so threateninglike
lethal.
Actually, its TALitha, I corrected.
He smiled. Ah, Talitha. I used the Aramaic pronunciation.
You know the story behind your name?
Yes.
In the Book of Mark, there was a little girl around your
age who was very sick. Her father, Jairus, approached Jesus
in the synagogue and begged him to heal her. But by the
time Jesus reached the house, the child was already dead.
Even though I knew this story backwards and forwards, I
felt like I was hearing it for the first time. He sounded like
a radio announcer. Jesus took her by the hand and said,
TALITHA CUMI! LITTLE GIRL, ARISE!
I jumped. Father Duggan was practically shouting. It was
like he was acting in a play, or like his words were a magi-
cal spell that could actually raise people from the dead. By
then, Id almost forgotten why Id come to see him in the
first place.
22
So, hows everything working out so far? Can you get to
and from class?
Yes.
Im told youre very bright and youre doing well.
I almost said yes to that, too. Thank you.
Well find something else for you to do during gym. OK,
Talitha?
. . .Good afternoon, TalEETHa.
What a beautiful name. Id never
heard anyone pronounce my name
that way. It sounded so
threateninglike lethal.
Thanks. At my old school, the gym teacher adapted all the
exercises for me. And could you put me on the schedule
for the readings? I always read in my church at home. The
priest usually just carries the book himself. They set up a
chair so I dont have to climb the steps, or someone helps
me. It wouldnt be difficult at all.
Of course. He was looking down at paperwork on his
desk, like I was already gone. Id planned to ask him to
meet with my parents, but I decided that I could handle this
by myself. After I left, I realized that Id forgotten to ask
him about my coat.
After that, I got to stay inside during recess and gym. It
gave me more time to read anyway.
No one had ever mentioned God at my public elementary
school. But every Friday at St. Agnes, we had a prayer
service with readings and a sermon, plus Masses on holy
days. Father always picked students to be the readers. While
he processed down the aisle, the reader marched up the
stairs to the altar, carrying a heavy missal. During the Our
Father, I once held hands with the girl next to me, like we
did at my church at home. She let go, like Id given her an
electric shock.
I kept asking Father Duggan to put me on the schedule, but
he never did. Every other kid in my class got at least one
turn. Sometimes they made hilarious mistakes, like: He
prostated himself before the king. I didnt usually think
other peoples mistakes were funny, but soon, I started
laughing at them.
At first, I thought she was
pretending to be drunk for some
reason. Then I noticed that she was
dragging her left leg and shouting
long, nonsensical words in a
snobby voice.
Father Duggan always used a lot of incense, which the
priest at my church only used on Good Friday and at funer-
als. When I opened my mouth to sing, the bitter-smelling
incense hit the back of my throat and made my eyes water.
I usually sang along anyway, until I realized no one else
was singing except Father. He sang every part of the Mass,
even the readings. Sometimes it sounded ridiculous when
he tried to cram in all the words. His voice was so low that
it blended in with the organ. Even when he was giving a
sermon, it sort of sounded like he was chanting. I usually
didnt pay attention to what he was saying, just the mesmer-
izing rhythm of his voice.
On the first day of religion class, Father walked into the
classroom and said in his booming voice: Boys and girls,
some people try to take every word from the Bible literally.
But listen to Psalm 14: There is no God. He closed the
Bible and smiled at us. That cant be in the Bible, I thought.
He said, Now let me read the whole thing: The FOOL
says in his HEART, There is no God . . . I couldnt decide
whether he was a brilliant speaker or hed tricked us some-
how.
Whats the last book of the Bible? he asked us the next
week. Most of the other kids were staring out the windows
in a daze. He looked around the room. Anyone? Miss
Dias?
Revelation, I whispered, staring at my fingernails.
Yes, exactly! he said excitedly. Protestants call it Revela-
tions, as if there are all sorts of juicy secrets in there. After
that, he always called on me, even when I wasnt raising my
hand, and seemed amazed when I knew the answer. When-
ever I got a question right, Olivia would snicker. Sometimes
one of the boys hissed, Yessss, Miss Diassss! One day,
someone stole my homework from my backpack. I thought
I saw Olivia and her friends passing it around and copying
it.
Father talked about abortion a lot in religion class. On
the anniversary of Roe v. Wade, he told us that 30 million
babies had been aborted since then, which seemed like an
unimaginable number. I wondered how many parents chose
an abortion because the baby would have had a disability. I
couldnt stop thinking about it. It made me feel almost like
part of an endangered species.
After Fathers dramatic sermons, even Communion seemed
anticlimactic. He rushed through the prayers of the Con-
secration. Hed shifted the focus of the Mass off of Jesus
and onto himself. The altar was his stage, and we were his
audience. Late one night, when I was watching TV, I saw a
few minutes of Rosemarys Baby. I had a nightmare about
a strange cult with bizarre rituals, like a backwards version
of the Mass. Father Duggan was their leader. I couldnt tell
whether they were Satanists or worshipped him instead of
God.
While I was walking to class one morning, I saw Olivia
stumbling around in the hallway. At first, I thought she was
pretending to be drunk for some reason. Then I noticed that
she was dragging her left leg and shouting long, nonsensical
words in a snobby voice. A bunch of other girls were watch-
ing her and laughing.
I thought my heart had dropped into my stomach. Is that
what I look like? I wondered. I wanted to ignore them and
just concentrate on walking to class. My eyelids felt weirdly
heavy, like I wanted to cry but couldnt.
Ever since that meeting in Father Duggans office, Id never
complained to an adult at school. But Mrs. Renault was just
walking by. Hey, girls! she called cheerfully. No ones
in trouble. Lets just chat. She asked us to gather around
her in a circle, like she was our buddy, not the principal. I
know these years can be tough, but theyre wonderful too.
Believe me, someday youre going to want these days back.
So lets all try to be nicer to each other, OK? Remember,
Father and myself are always here if you need to talk.
Then she walked back to her office, without looking at any
of us.
In April, Mrs. Renault announced that the sixth grade was
going on a field trip to New York City. I think it would be
too tiring for you, kiddo, she told me. Id gone on lots of
field trips in elementary school and had never had any prob-
lems getting around. I almost told her that nothing was too
tiring for me, but its not like I wanted to go with them.
23
Of course you can go! Mom said. Do they need any
more chaperones?
On the day of the field trip, we all had to be on the bus by
6:00 a.m. I grabbed both railings at once and tried to climb
up the high stairs, but other kids kept pushing around me
and saying I was holding up the line. I hoped no one noticed
that Mom had to help me a little. I sat down in the first row,
relieved that Id made it. When the other girls walked onto
the bus, Olivia looked very carefully at me and then averted
her eyes, like I was repulsive. Her friends copied her ex-
actly. They walked past me and chose seats near the back
of the bus, as far away from me as possible. Even the boys
followed them. The only kid sitting anywhere near me was
Rob, a couple of rows over.
Id never told my parents about the
gym teacher making me sit under
a tree, Father not letting me be a
lector, or anyone else excluding
me at school.
Mom was sitting with the other parents and teachers, but
she immediately walked over and sat next to me. I almost
said, Please dont, Mom. Sitting with your mom on a field
trip wasnt just mortifyingit was social suicide. But they
already hated me, so I had nothing to lose.
Mom looked exhausted. She had puffy, dark circles under
her eyes and her long hair was disheveled. Shed started
working second shift at the hospital a few months ago, and
Dad drove me to and from school on his way to work. If
she got home at midnight, shed probably gotten about five
hours of sleep. It made me feel guilty that she had to get up
so early and take a day off from work.
The inside of the coach bus didnt look anything like a reg-
ular school bus. There was a TV screen in every other row,
and the seats were covered in what looked like a carpet. I
had closed my eyes and leaned against the headrest when I
heard Mrs. Renault shouting over the traffic.
Good morning, kiddos! Some public school kids dont
learn anything on field trips. So were doing something fun
AND educational. Were going to have a scavenger hunt.
For a grade. I heard people grumbling. She passed out dis-
posable Polaroid cameras and sheets with trivia questions.
24
Then she put a video in the VCR, a Biblical miniseries with
cheesy music and special effects.
This is absurd, Mom said.
Seriously! The Israelites didnt have blond hair and blue
eyes.
No, look at this. You all have to go up to the top of the
Statue of Liberty, the Twin Towers, the Empire State Build-
ingand its all part of your grade.
I looked at the long list of landmarks. We had to visit each
of them and collect an interesting fact or take a picture. I
know a lot of things about those places anyway. I can just
make something up.
But you shouldnt have to do that, honey!
I shrugged.
I thought she said they made sure the trip would be totally
accessible for you! Do they do this a lot? Leave you out of
things?
Id never told my parents about the gym teacher making me
sit under a tree, Father not letting me be a lector, or anyone
else excluding me at school. Each of these things seemed
unimportant when they happened, and I thought it was
better if I dealt with them by myself. Id usually just nod
when my parents asked me if Id had a nice day at school.
Sometimes I lied: I had lunch with my friend Olivia. I
was afraid that if I told them one little thing, the rest would
come out like a flood, and Id never be able to stop talking
about it. But now I finally told Mom everything. We were
almost whispering, but I didnt even care if someone over-
heard us. I thought it might take the whole five-hour bus
ride to explain everything.
I kept my voice calm, but Mom sounded like she was going
to cry. This is all my fault, honey. I wish Id been home
after school so you couldve told me right away. But you
can talk to me any time, even in the middle of the night! We
could have found another school back in October.
I wasnt even sure whether I wanted to transfer in the
middle of the school year. Somehow it seemed like failing
or at least surrendering and letting people like Olivia win.
I was used to being able to handle new things, even really
uncomfortable ones like different kinds of physical therapy.
I couldnt let it get to me.
The bus finally stopped near Battery Park. It was one of
those cloudy, depressing days when the sky is more white
than gray. The sky reflected in the water, making it look
creepy, almost silver. I stared across the harbor at the Statue
of Liberty raising her torch into the fog. Rob smiled at me
and held up his arm at a weird angle, so it looked like he
was carrying the torch. I cant remember whether I smiled
back.
Most of them had shopping bags
or those silly green foam hats
that looked like Statue of Liberty
crowns. No one even asked me
where Id been.
Mom and I waited while everyone else stampeded out of
the bus. A man in a lime green shirt ran over to the bus, ges-
turing wildly. By the time Mom and I got off of the bus, the
tour had started without us. Mom took my hand and ran af-
ter the group, shouting that she wanted to give Mrs. Renault
a piece of her mind. But they were already gone, following
the guide at a much faster pace than I could walk.
I guess were our own tour group now, honey, Mom said,
trying to sound cheerful. We didnt exactly have a choice.
The bus driver had said he was coming back to Battery Park
at 5:00, so at least wed be able to find them at the end of
the day.
I noticed a sign outside the visitors center describing all the
handicapped accommodations. You could read brochures in
Braille or even rent a wheelchair for the day, as long as you
called in advance.
So they paid for a guided tour but didnt care whether it
would be accessible, she said. Unbelievable! Youre all
supposed to go to the top of the Statues crown, but theres
no elevator up there. What the hell is wrong with this
school?
Its OK, Mom, I said, but thats not even what I meant. I didnt realize what was happening. It was everywhere. The
just wished she wasnt so upset.
I realized that we couldnt even get in because Mrs. Renault
had everyones tickets. Mom and I spent most of the day
waiting in an enormous line that twisted around the build-
ings. The visitors center had a video about immigration
playing on a loop, and Id almost memorized the whole
thing by the time we got our tickets. We took the ferry to
Ellis Island because it was more accessible than the one to
Liberty Island.
Then Mom and I went back to Battery Park to wait for our
bus. When the rest of the class arrived, they were all talking
excitedly. Most of them had shopping bags or those silly
green foam hats that looked like Statue of Liberty crowns.
No one even asked me where Id been. Apparently they
didnt notice. Or maybe they thought Id planned to spend
the whole day with my mom in the first place.
Rob sat near me again on the way back. He tried to show
me how to make origami, but I was terrible at it. He wrote
down his phone number on a piece of paper, but I lost it by
the end of the day.
From the back of the bus, I could hear the other girls play-
ing those clapping games that seemed like a secret code.
When someone messed up, Olivia would laugh and say,
Gay! or Youre retarded. Without looking up from her
novel, Mrs. Renault said, Ladies, language.
Mom said wed come back to New York by ourselves some-
day and see the Empire State Building and the Twin Tow-
ers. But first, we had to find another school. Before I trans-
ferred, Mom wanted to have a meeting with Father Duggan
and Mrs. Renault. I thought that would be what Dad called
a moot point.
* * *
The only public middle school in my city had six floors, a
thousand students, and security guards with metal detectors.
It was constantly in the news because kids were beating
each other up and joining gangs. The other Catholic schools
were decrepit and over a hundred years old. They had steep
staircases and uneven floors. When Mom and I looked
around at other schools, we remembered why wed picked
St. Agnes in the first place. At least it had a much newer
and more accessible building than all the others.
That summer, after wed finally found an accessible pri-
vate school in another town, it seemed like every story on
the local and national news was about pedophile priests.
Dad stopped watching the news at dinner, but its not like I
papers included all the gross details. Even when they tried
to imply things, I could figure it out.
One afternoon, I had the TV on, but I was only half-watch-
ing. Then I heard a voice say: After over thirty years as
pastor at St. Agnes Parish and School, Father James Dug-
gan has resigned following an accusation of sexual abuse.
25
I put down my book and stared at the TV. The report said
that a woman had accused him of molesting her back in the
70s, when she was twelve. The statute of limitations had
expired, so they couldnt arrest him. I wondered if hed get
defrocked. I imagined him giving a long, eloquent speech
saying he was innocent, and Mrs. Renault telling the report-
ers that he was so holy. But the reporter just said, Duggan
could not be reached for comment, and moved on to an-
other story.
Mom came running into the room. Honey, did he just say
Father Duggan? Her voice was shaky. She hugged me and
stroked my hair.
Im fine, Mom. Nothing happened. I dont know whether
its true or not.
Oh, thank God, Tallie. Youd tell me, right? She turned
the TV off.
I tell you everything. Nothing happened, I repeated.
When I went back to my room, I thought about that day
near the end of Lent when Father Duggan had held a Rec-
onciliation service. He told us to remember that Jesus had
died for each and every one of our sins. That made me feel
guilty because it sounded like Jesus was still dying right
now, and my actions were killing him. We all lined up in
front of the confessional, fidgeting nervously. I wished I
could have gone to some random priest Id never met be-
foreanyone but him.
There were two booths set up in the chapel: one with two
chairs facing each other, and one with a screen and a place
to kneel. Id never seen a confessional like that before, and
I dont kneel, because its uncomfortable. But I chose the
confessional with the screen just so I wouldnt have to talk
to him face-to-face. It was dark and cramped, with a stale,
26
musty smell. I could barely see Father silhouetted through
the screen. I recited the Act of Contrition and mumbled
a few boring things. The priest stands in for God, so just
imagine youre talking directly to Jesus, I reminded myself.
But I couldntnot when I heard Fathers booming voice.
My child, that was a lovely confession. I had been going
to confession for four years, and no priest had ever said
anything like that to me before. You are so spiritual. Thats
a gift, you know. Youre very conscientious. Do you know
what that meansconscientious?
I nodded, like he could see me. For some reason, my tongue
felt frozen. I wondered if he talked to everyone like this. Do
you even know who I am? I thought. I was waiting for him
to give me my penance, but he just kept talking: Now Im
going to have to ask you to forgive me. Remember when
you came to my office? You were so quiet. Before I had a
conversation with you, Id always assumed His voice
trailed off. Well. Our Lord thinks people like you are very
special, you know.
Oh God, he knew who I was. I wasnt anonymous behind
the curtain.
When he finished the prayers of absolution, I asked, Can
I go now? My knees felt glued to the carpet. I got up, my
legs feeling tight and unsteady, and left the confessional as
fast as I could.
Of course I knew Jesus cured disabled people, but Id never
wondered whether they wanted him to. I probably used
to have an answer for that too, but it was gone. That was
the day I realized that I couldnt sing anymore, even when
I was alone at home. Whenever I tried to sing, my throat
would close up, and no sound would come out.t

Everyone Deserves a Turn
Bert Edens
I
t never ceases to amaze me how someone can say so
much by saying so little.
For our son Zakarys thirteenth birthday, we were, for the
first time, having his party at a big kid place. He knew he
was now a teenager, and he wanted to celebrate appropri-
ately. So we booked the party at a local place bragging of
video games, miniature golf, water boats, and go-carts.
Past experience had shown us that few of the students from
his special education class would attend. It was still a recent
shock to find that when he took a field trip to the mall in
sixth grade, he was the only student in his class of sixteen
who had even been to a mall. So our hopes for high atten-
dance were slim, even though the weather was projected to
be perfect for early March.
As the party progressed, the attendance was pretty much
as we had expected. One friend and his mom brought a
present, chatted for a minute, then left. Two other parents
stopped by without their children, dropped off their pres-
ents, then left. There was even a friend who came, got his
game tokens, and then disappeared to play games for a
while, without so much as a word to Zak or a present.
Lupe, a friend of Zaks since kindergarten and her mother,
did attend. Lupe was a young lady with severe cerebral
palsy. As with many people with CP, we knew she compre-
hended far more about her surroundings than what she was
able to verbalize or communicate. We knew Lupe fit that
mold, because she only had four words in her vocabulary:
Yes, No, Mom, and Damn. But it wasnt the words another with our kids.
themselves that clued us in, but her use of them, primarily
PERSONAL ESSAY
the last. We knew this because she typically delivered that
word as if it was a four-or-five syllable word, released at
full volume, almost exclusively when the classroom was
dead silent. Laughter would erupt, and Lupe would rock
back and forth in her wheelchair, grinning from ear to ear.
Oh yes, she knew exactly what she was doing.
It didnt surprise us when Lupe and her mom showed up, as
Lupes parents were always very progressive about keeping
her involved in community activities. Still, it was a relief,
because she was certainly Zaks best friend in class. While
my wife and I talked to Lupes mom, Zak entertained her by
repeatedly signing Whatever and rolling his eyes, which
was guaranteed to elicit a giggle from Lupe no matter how
many times he did it.
Eventually, Zak got the itch to play video games and other
activities, so I took him to do that while my wife stayed and
visited with Lupes mom. Zak and I rode go-carts, played
video games, and even checked out the new laser tag facil-
ity. As we dropped off more tickets from the video games, I
noticed that while my wife and Lupes mom were chatting
like the old friends they were, Lupe was certainly bored.
Then it dawned on me, there werent any activities here
which Lupe could get fully involved in. Or were there?
After thinking it through a bit, I sat down and talked to
Lupes mom. We talked about how long the kids had been
friends and how each set of parents had taken turns watch-
ing the others at various events. We definitely trusted one
27
So I asked the big question: Could I take Lupe for a go-cart
ride?
Predictably, the first reaction Lupes mom displayed was
a combination of uncertainty and sheer terror. Sure, she
wanted her daughter to have a good time, but she would be
totally unable to protect her for a period of time, when there
would be countless risks and variables. After considering it
for a few moments, she smiled and told me yes, she thought
that would be wonderful.
As the parent of a child with special needs, I knew the leap
of faith Lupes mom was taking with me, and I didnt want
to betray her trust. The first thing I did was talk to the young
man running the go-cart track. We discussed it, and he said
patronage was slow enough he could make sure that we
were the only ones on the track. Sure, it wouldnt be the full
experience, but it was something.
The next thing I checked were the shoulder harnesses in
the two-seat go-carts. Not surprisingly, they looked a lot
like what Lupe used in her wheelchair. I felt comfortable
that they would secure her safely. Looking at the track one
last time, I took a deep breath and went to get Lupe and her
mom.
The young man running the track was nice enough to make
sure a two-seat go-cart was at the front of the row, so we
could get out easily. I couldnt help but wonder if any man-
agement types would have been as accommodating, likely
worrying about liability or other legal issues. I was very
grateful this young man was doing all he could for Lupe,
and I told him so several times.
Getting Lupe into the go-cart was a bit of an adventure sim-
ply because I needed to lift her out of her chair and into the
go-cart, and at first, she wasnt sure what was up. Several
times she looked at her mom for reassurance, and her mom
smiled and nodded, somewhat successfully masking her
own trepidation.
Once Lupe and I were fastened in securely, the employee
started the timer and the green light went on. And off Lupe
and I went. At first, I went very slowly, my own nerves
about hurting her getting the best of me. But as I drove, I
noticed Lupe looking around and just grinning, enjoying
the full experience. So I did what any parent gifted with
complete responsibility over the health and well-being of
someone elses child would do. I sped up.
28
Boy, was that the right thing to do. More wind in our faces,
more rocking back and forth, more vibration from the mo-
tor. It all combined to increase Lupes excitement, and the
ride was soon sprinkled with frequent interjections of Yes
and Damn. I started yelling and having fun. Zak started
cheering from the spectator area. Even Lupes mom would
clap and yell as we passed by.
Eventually, the dreaded caution light came on, signaling the
end of our adventure. Even though the young man was nice
enough to turn the green light back on so we could ride lon-
ger, the line of people waiting their turn told me it was time
to park the go-cart.
Lupe was excited as we transferred her from the go-cart
to her wheelchair, rattling off a series of Moms and
Damns. Eventually she became subdued and just looked
around and smiled at us all. Zak started with his What-
ever gag again, but she only smiled. Im sure she was tired
from the experience.
When we returned to the party room, my wife and I talked
to Lupes mom, who was gushing in thanks and apprecia-
tion, mostly for thinking of giving her daughter an experi-
ence nobody else would have considered. Admittedly, had I
not been the parent of a son with special needs, I might not
have thought of it either. The more we chatted and laughed,
the heavier Lupes eyelids got, and eventually she suc-
cumbed to exhaustion. I hope she had many dreams about
the go-cart ride.
Im lucky I can tell this story. I also hope someday technol-
ogy will advance so Lupe can tell her family the story from
her perspective. My hope is that she remembers it even a
fraction as fondly as I do.t
 POETRY

Jessica Goody

Senses
My hands are old before their time.
They resemble a sages fingers, gnarled and ancient.
My sunken joints and wrinkled knuckles possess an odd elegance.
Flickering tendons meet the green cobwebs of my veins,
my fingertips provoking the rhythmic chatter of the keys.

My hand flops flounder-like

at the end of a narrow wrist,
hanging limply, curving
in the spastic arc of the lame,
its bitten nails like broken seashells.

The twitch and ticks of sudden spasm belie the fierce concentration
required
to cross treacherous parking lots,
avoiding cold puddles and broken concrete,
loose steps and stairs without railings,
divining the clearest route across a room,
sensing the texture of grass underfoot,
divots hidden amongst the green.

My thick, heavy foot and flailing synapses

rely on my sense of touch
in order to make my way in the world,
stumbling between crowds and along rough terrain,
seeking handholds for security,
testing the air the way a snake does, sightlessly,
with a flicker of its tongue, scenting shapes
and objects unseen in the dark.

Previously published in Open Minds Quarterly and

Barking Sycamores. Reprinted by permission of the author.

29
PERSONAL ESSAY
Not His Circus,
Not His Clowns
I
t is probably not fear, because he
is not afraid of anything. Anxious
sometimes, wondering if hell fit in,
but not afraid. His hands, clammy on
the first day of school, his face white,
heart racing in his chest, taking deep
breaths so he wouldnt throw up when
he exited the car. Other kids laughed,
greeted each other, teased. He walked,
cautiously, trying not to make eye
contact. His world was different, a per-
ception he could not explain, needing
predictability, routine, calm. His sister
picked out his outfit. He had no interest.
Sirens, loud honking, even trays hit-
ting the metal shelf in front of the food
counter in the cafeteria, pierced his
ears, sending jolts of pain to his hands
and feet. Children were supposed to
like fireworks, the circus, fire trucks.
He cowered, shrinking from the chaos,
holding his ears, closing his eyes.
Look at that funny face. See those sil-
ly people. Watch this colorful parade.
No. It is noisy, out of kilter, not what
happens every day. It does not belong.
Pain followed the noise. No one knew
what he saw through the glasses he had
worn since he was three, bifocals, try-
ing to coax the weak eye to participate.
Holidays brought characters, like the
30
Phyllis H. Moore
circus brought clowns. They did not
fit, were not supposed to be there.
Faces were painted, bearded, reddened.
Clothes were exaggerated, embellished,
inflated, costumes of the ridiculous.
Maybe they were not clothed at all, ani-
mals appearing on cue to deliver eggs,
animals who do not lay eggs, rabbits. It
made no sense to a mind wanting rou-
tine, certainty, a mind already tilting,
trying to hold on to the edge, grasping
what could be recognized and folding it
into some kind of reality to ground his
body. Wondering as he is walking, if
anyone notices the wobbling occurring
in his steps, hoping his feet will land on
a surface, unsure it is there, no depth-
perception.
Oh, come on. It will be fun. There are
all kinds of things to see. The rides,
the lights, those crazy clowns. You will
have fun. Torture. That sounds like
torture. You are such a party pooper.
You dont ever want to go anywhere!
Its true. He doesnt. There are things
there, things that send shock waves
through the body, things that can make
you fall down, things that cloud an al-
ready skewed reality, things.
You lost your tooth. Hurray, the Tooth
Fairy will bring you money. Put this
tooth under your pillow and she will
come in your room tonight and leave
you money. He cringed, wondering if
she would fly into his room. Would she
be tiny or big? Does she walk? Where
does she carry the money? Why does
she do this? How many other houses
will she visit? Does she have to come
here? What is she going to do with the
tooth? He posed all those questions and
more.
I have money, he said. If you will
pay her, I will just leave the tooth out-
side. I dont want a fairy coming into
my room in the middle of the night. Do
you know her? Okay, no fairies. They
dont make sense, no business being in
peoples houses at night, leaving mon-
ey, picking up teeth. It is slightly gross
if you go to that part of your brain that
can reason.
An agent, plain clothes, no makeup,
running interference for the absurd.
That is what he wanted, someone
to keep the fairies, Santas, bunnies,
clowns and other farcicalities away.
Shoo them to the boundary of his vi-
sion, so the contradiction did not alter
his already confused perception of
what might be real. Later, much later,
 POETRY

he can explain, but it is not expected.

He believes in Santa, almost forty and
he does, but not the personification, the
spirit. Watching Miracle on 34th Street
every year he notes the spirit. See,
he says, seeing no need to animate this
spirit into a red outfit on a fat bearded
man. Its genderless, he explains,
doesnt need a person. Its a manipula-
tion that people invented, and he re-
sented the assumption when he was a
child, that adults would think that was
okay. He teetered. He knew he did. Ev-
ery day, he struggled to step, to write,
to express his thoughts, but the things
he knew for sure were not clothed in
the ridiculous, painted with red noses,
with orange hair, or loud.
Halloween was the worst. Lets
just stay here and eat the candy you
bought, he said. No need to walk the
streets asking for candy from other
houses. Stay home, watch a movie, eat
some popcorn, and have some candy.
The other stuff was not necessary. He
wasnt scared, in fact he was fearless,
but why put yourself through a disguise
that is not necessary. He complied a
few times, but only because others
insisted. No store bought super hero
outfit, Sam I Am, something he put
together. His palate only wanted choco-
late, no nuts. His Halloween bag would
be poured into a communal bowl. He
didnt care.
Cathy Bryant
Arm
My right arm has not hurt for a week.
I can stretch it, roll it, bend itjust for fun.
It almost might not be there, except
for the warmth. It feels unfamiliar.
Im cautious.
My lover can be spontaneous and/or casual
with it. He rests his arm on it, or his mouth.
Again, warmth. And pleasure too.
Id forgotten this. Breath on a bare arm,
and it doesnt hurt, add to the weight,
or make me tense up that bit more tightly.
I do not have to put up with my right arm,
or do breathing exercises, or positive
visualizations. The drugs work, are enough.
A whole arm! I make a curve, sweep back
and forth. I feel human and alive.
I stick it out of a window and feel,
oh bliss, the wind whisper over it.
Im trying not to be angry about
all the other parts. Angry at whom or what?
Sure, take time out to rail againststuff,
but hellenjoy the arm. Wave. Gesture.
Let it flop. Lift something. Nudge someone.
This is my gift, for now.

An adult, today he would say he contin-

ues to be anxious in new surroundings.
Quiet, shy, little eye contact is still his
demeanor. He has no patience for the
manipulations of holidays and charac-
ters. Theres medication, the doctors
say. Reduces the anxiety, relaxes.
Yes, there is. Hes tried it. Makes my
stomach hurt. I gain weight, he com-
plains. Im not myself when I take
that. Not his circus, not his clowns.t

31
PERSONAL ESSAY
Chromosome 17 and the State
of Mutual Trust
Alisa A. Gaston
T
hey tell me she will not have friends. At one point or
another, all of my daughters doctors and therapists
have said this. It has especially worried me as I plan
her fourth birthday party. I noticed it first on an online sup-
port group forum that I found six months ago for parents of
children with neurofibromatosis-1. This tendency, this pat-
tern. Many of the moms on the site ask for people to send
their son or daughter birthday cards because they claim
their children have no friends. Ive sent cards, but filed the
pattern into the back of my head.
Her disorder, or disease as some call it, affects cell growth
in the nervous system, which presents the possibility of
tumors forming anywhere along nerves in the brain, spinal
cord, and skin. Enlargement and deformation of bones and
curvature of the spine, high blood pressure, and juvenile
myelomonocytic leukemia may also occur. There is a high
rate of developmental delays and learning disabilities as
well as attention deficit hyperactivity disorder.
It is caused by mutations of the neurofibromin 1 gene,
which is located on the long (q) arm of chromosome 17 at
position 11.2. Chromosome 17. Such a small alteration in
my daughters complex DNA. Like a tiny rip that eventu-
ally causes a tremendous tear in her physical existence. In
the medical manuscripts, there is no mention of a friendship
deficiency.
Our daughters disorder first appeared by way of caf au lait
colored spotsflat, light-brown spots on her skin. Penny
was born with one on her forehead and many others, along
with tiny freckling that soon formed on her arms, torso, and
32
legs. Perhaps this is when the seed planted itself. The seed
that has grown into the fear that my child will be rejected
by others as she grows older, and well into her adulthood. I
remember looking at her spots and wondering if when she
reaches junior high school, the other kids will tease her. Ive
always thought of junior high as being the first channel of
cruelty, at least thats how I remember it. So as I bathed my
baby in the upright European baby tub sitting within our
normal tub, her hair wet and tousled, her tiny legs crossed,
her blue-green eyes happy as she mouthed a rubber water
bug, I went through a pretend dialogue in my head. When
the time came, I would reassure her that the spots made her
distinct, like the gorgeous markings on animals. She would
be my leopard baby and I would help her develop a strong
personality to match, to fend off the verbal brutalities.
By the time Penny was one year old, I knew there were oth-
er issues arising. I had socialized her from the time she was
eight weeks old. We began in a new-mother support group
at the hospital, which morphed into twelve of us breaking
off and forming our own moms group. We met each week,
took turns at our homes, and let our babies crawl on the
floor and pull on brain-stimulating toys or squeeze plush
stuffed animals. Naturally, the milestone conversations
began. My daughter fell to the back of that milestone race.
The race that we are told does not matter, the race that we
brush off while repeating the mantra, every child is differ-
ent, and yet, that race constantly runs within us. From the
start of that race, my baby was social. She never cried when
I left the room or left her with a babysitter, and she crawled
up to others, especially adults, to gaga her hellos.
She did not walk until she was eighteen months old, at
twenty months old she began wearing glasses due to am-
blyopia in both eyes, and at her two-year check-up, her pe-
diatrician said that if she couldnt speak within six months,
we needed to find a speech therapist. At the time I scoffed.
I repeated the mantra. Shortly after that, it was a genetics
doctor who ran the blood test, confirmed my daughter had
NF1, and agreed with the pediatrician. Yes, she needs a
speech therapist. And a physical therapist.
I began to notice the reactions toward my daughter were
becoming negative when she turned two. At parks, because
she could not move like the other children or speak well
enough, they gave her strange looks and ran from her. Once,
as she crawled up some playground equipment while the
other kids her age skipped and monkeyed their way around
it, one girl looked at Penny and said, You look weird.
I told the girl, That was not nice. She apologized and
walked away. My daughter, still on her hands and knees,
looked up at me smiling, clueless to the insult that had just
been thrown. This is when I began to feel a pain that I have
never felt before in my life. I have weathered many trage-
dies in my childhood and adulthood. I have known extreme
sorrow and anxiety through abuse, abandonment, others
addictions. But this was different. This was my child and
the pain I felt watching her being rejected by other children
pierced the deepest part of my soul, bypassing the thickest
of scar tissue.
But Penny is happy. She spends the majority of her days
smiling and releasing a gregarious laugh, cracking herself
up and making my husband and me bellow. She pretends
to take our bellybuttons and makes up silly walks as part
of her bedtime routine. She is jubilant as she talks to her-
self while playing with fairy dolls, hording stuffed animals
on her bed, or filling her play tent in the living room with
small, colorful mountain rocks, cloth pieces of smiling
fruits, my magazines, and miniature flashlights she has
pilfered from the kitchen drawer. She excitedly lays out the
bingo cards after dinner each night or helps deal the UNO
cards. Whenever she meets other children she says, Hi, my
name is Penny. So Ive told myself, she will be okay. She
is blissful, she will make friends.
At two and a half, my daughter began to say hello to
everyone she passed. At the grocery store, at festivals, at
story time, walking down the sidewalks. Some adults said
hello back, most children did not. This infuriated me, I
thought to myself, who doesnt teach their kids the basic
social skills of greeting someone? My daughter would look
at me confused, wondering why they stared but failed to
acknowledge her. Each time I shrugged my shoulders and
said, Oh well.
By the time she was three, several medical professionals
had told me she would have difficulty making friends. She
was finally speaking coherently and continued to say hel-
lo to unfamiliar people. But now when she didnt receive
a response, she would boisterously announce, They didnt
say hello to me. Each time I told her, Maybe they didnt
hear you, or Some people just dont say hello. I said
these things loud enough for the person to hear me. In some
cases, the person turned around and apologized then said
hello to Penny, then she and I would smile at one another.
This was also when I realized that my daughter verbalized
everything at full volume. She did not seem to understand
the inflection in her voice, regardless of how often I said,
Lets use our inside voice, she simply did not get it.
She entered preschool and I noticed many of the other kids
kept away from Penny. Her loud voice put them off; per-
haps it was her exuberance as well. She also seemed to lack
perception of personal space. I shrugged most of this off,
believing that many three-year-olds are unaware of auditory
and physical boundaries. But as the year progressed and the
others in her class began to adapt to individual margins, the
rules of interruption, and appropriate volume, my daugh-
ter remained in her animated state. I volunteered in her
classroom once a week and noticed that she played alone.
Sometimes when I went to pick her up and arrived early, I
watched her on the playground from my car. I observed her
wandering around by herself, unable to adequately climb
the equipment or swing on the swings. All of the other
children laughed and ran in pairs or small groups. And yet,
Pennys teachers and in-class occupational, physical, and
speech therapists adored her. They were impressed that she
had been the first kid to know all of their names, as well
as her classmates names. They commented on her liveli-
ness and how affectionate she was toward them. They told
33
me that when I had to keep her home for four days due to
a respiratory infection, all of her classmates asked about
her, desperate to know when she would return. Somewhere
in their developing miniature relationships, they liked her.
This gave me hope in the friendship realm.
Penny is required to have yearly neuropsychological exams.
So far at each one, she has tested two years above her age
group in intellect when it came to language, conceptual-
ization, and analysis. This also seems to create a barrier
between her and other children. Her speech is lucid now,
but its her vocabulary that causes them to stare at her with
dumbfounded expressions and then walk away without
acknowledging what she said to them. At the last exam,
the neuropsychologist confirmed what I had been dragging
along in the back of my mind despite my hopefulness, Yes,
its true, these kids have a hard time making friends.
Even though some of these moms
knew of my daughters disorder,
they were impervious to its
influence on her perceived
shortcomings.
But I mentally skated over her remarks. Penny has no prob-
lem speaking to random people if she has a question about
what theyre doing or about something in her immediate
surroundings. She knows the names of all the employees in
the grocery store floral department and at each trip, without
hesitation she politely asks them for the standard free bal-
loon. I would confirm to myself, my kid is social. Then I
spoke to a woman who used to run a support group for the
parents of NF1 kids. She has a son with the disorder. He is
twenty-eight now and as she and I spoke on the phone, we
laughed and marveled at how similar our children seem to
be. She described behavior or habits that her son had when
he was my daughters age, and we thought it amazing how
spot on they were. They both recognized every letter in the
alphabet by the age of two but could not sing the alphabet
song; they both knew how to spell their names verbally at
an early age but struggled to write letters; they both meticu-
lously organized items but not in a keep-it-neat sort of way,
rather in a categorical way; they both experienced fatigue
even after getting a good nights sleep and an excellent
nap. Then she described a trait that unsettled me. She told
me that her son often initiated conversations with others
34
but sometimes checked out when people spoke to him.
This is something that Penny had recently begun to do. I
have always discouraged it, telling her that she must answer
people when they speak to her. The woman also told me
that when her son went to university to study for his dream
occupation in the field of psychology, after only one semes-
ter the school kicked him out. They wrote a formal letter
stating that he did not have the required personality to be
a psychologist. They wrote that patients would not be able
to relate to him because of his deficient social skills. A sick
feeling in my gut turned, especially when she told me he
had never had a girlfriend, and only had one friend. I told
myself, one good friend is all you need.
The original moms group dissolved long ago. People
moved out of state, or across the city. People developed dif-
ferent interests and left to participate in other activities. So
I joined a professionally organized moms group and be-
came the newsletter writer and editor. At first I was excited
about another regular and reliable group to spend time with,
and of course, I was excited for Penny to have friends. As
time went on, I noticed that she did not play with the other
kids, she wanted to hang out with the moms. She could
certainly hold a conversation with us as she sat and nibbled
her snacks. She is a healthy eater, but tends to lack the
recognition of having a full stomach. Her pediatrician has
described her as very overweight. This has been a delicate
issue because I want her to regulate her eating, but at the
same time, I dont want to say anything to make her feel
self-conscience about her eating or her body. Apparently,
the other mothers did not feel the same way. They began to
make comments and I became defensive.
My daughter is plump because she cant move like other
children her age. She is in physical therapy, occupational
therapy, swim lessons, and dance lessons, and yet she re-
mains chubby. Fast food has never touched her lips, she has
never had soda and only drinks orange juice when she has a
cold. She eats fruits, vegetables, whole grains, seeds, nuts,
yogurt, olives, and hummus. She does not like meat. She
gets the occasional ice cream or cake. And still, she is just
short of the obese label in the medical charts. Even her
pediatric nutritionist assured me, its not what or how much
shes eating thats making her fat, its her lack of movement.
But it is the fat kid who is made fun of. Penny quickly
became the target of other kids in the moms group, and I
became the target of the moms. Some of them made state-
ments insinuating that I did not talk or sing to my daughter
enough when she was a baby, and that is why she is behind
physically. There were statements made about the amount
of food I let her eat even though she was the one snacking
on figs and pepitas while their kids ate cookies or fruit sickened me to think that this little girl was about to unravel
snacks made of high fructose corn syrup and Red No. 40, verbally all of the things she hated about my little girl and
Yellow No. 5 and Yellow No. 6 artificial dyes. They drank why she didnt want to be her friend, but fortunately, the
fruit-flavored drinks while my girl drank water. girl would not speak.

Shortly after these incidents, I quit the professional moms

group. I felt emotionally torn. Outside of preschool, these
were the kids my little girl hung out with. If I quit this
I waited for the mother to tell her group, and preschool was out for the summer, Penny would
have no friends. The predictions would be correct. Yet
daughter it was not okay to say around the same time, I met two exceptional women, both
things like that in front of people. with backgrounds in the science field, one with a little girl
a bit younger than Penny, and one with two boysone
But she did not. older and one younger than Penny. These two women have
accepted my daughter despite her disabilities, and more
importantly, their children have also accepted her. We went
camping recently with the woman who has two boys and
the kids had an amazing time hiking, collecting rocks, look-
Even though some of these moms knew of my daughters
ing at the moon, searching for bugs, and making smores
disorder, they were impervious to its influence on her per-
around the campfire. This, I thought, is how its supposed to
ceived shortcomings. One mother said more than once and
be. And then dread overtook me and I wondered how long
loud enough so that Penny could hear, She sure loves her
it would be before these children began to suspect there was
snacks. Another one explained to us that her daughter
something odd about Penny, and they also would abandon
wanted to know why some people were fat and had big
the friendship.
bellies. While Penny stood directly in front of us, her little
belly hanging out because she had recently gone through a
Several weeks ago, an MRI revealed Penny has two brain
growth spurt and I had yet to buy her longer shirts, the mom
tumors. Gliomas on both of her optical nerves. The eye doc-
said in a saccharine-sweet voice, I told my daughter that
tor and the oncologist at Childrens Hospital described them
people have big bellies because they eat too much food.
as complex due to the fact that they reach to the back of
This same mother told me she had recently read an article
her brain. During his examination of my daughter, and the
that stated some kids are simply sedentary and prefer sitting
consultation with my husband and me, the oncologist ex-
in a corner with a book rather than playing on a playground
plained to us that there was a possibility of her going blind.
or joining sports teams. She also twice emphasized to me,
They will monitor the tumors through MRIs, and if there is
But the article was very old school. In other words, that
any change in her vision, she will need to have chemother-
way of thinking is no longer accepted, so get your kid off
apy twice a week for an undetermined amount of weeks.
her fat butt and moving. Is it required of me to repeatedly
He also told us that NF1 kids have a difficult time socially.
emphasize to people like this that my daughter has a genetic
Again, the friend thing. He explained that kids are instinc-
disease in order that they accept and befriend her?
tive and when they get the feeling that there is something
off about another kid, they no longer want to be around
One day Penny wanted to play with a little girl in the moms
that kid.
group. She sat down next to her to share the sidewalk chalk,
but the little girl stood up and said, I dont want to play
After the genetics doctor examined Penny for her required
with Penny. My daughter ignored her and continued to
yearly physical check, she said she wanted me to take
draw on the pavement. I was thankful for her unresponsive-
Penny to a behaviorist to begin working on some of the
ness. Ten minutes later when the girl picked up a large,
social issues. She said its crucial that we begin addressing
red ball to bounce, my daughter asked her if she wanted to
early on the fact that my daughter has no conception of in-
play catch. Again the little girl said, I dont want to play
terruption, and is now frequently unaware when someone is
with Penny, as she stomped her feet, crossed her arms and
speaking to her even when the person is standing directly in
frowned. Apparently the mean kids are making appearances
front of her, despite the fact that I continue to address both
long before junior high school these days. I waited for the
with Penny. She also addressed Pennys difficulty focus-
mother to tell her daughter it was not okay to say things like
ingsomething the neuropsychologist pointed out as well
that in front of people. But she did not. Instead, she wanted
during her own testing and examination, and then recom-
to hear why her little girl did not want to play with mine. It
mended a book on children with ADHD so that I could pre-
pare myself for the antisocial behavior that is on its way.

35
Her private speech therapist recently determined that Penny
may have auditory processing dysfunction. Sometimes the
message from someone speaking makes it to her brain, and
other times her synapses fail her, dropping the communica-
tion between neurons. The therapist explained this is prob-
ably why my daughter has a way of directing people, in or-
der to control the situation. She said kids will interpret this
as bossy and probably wont want to be around her. favor boxes of wildflower seeds, and wait for the guests. I
The next evening at her swimming lesson, I watched my
daughter invasively lean into the other kids faces, telling
them not to splash and to stay next to the pools edge when
it wasnt their turn with the instructor. Both rules had pre-
viously been given by her instructor. But after a little girl
slipped, fell under water, coughed, and received concern
and cuddles from the instructor, Penny did not leave the
little girls side. She sat next to her on the edge and asked
her more than once if she was okay, then reassured her that
it would be all right. How can a little person with this much
empathy, this much warmth, this much concern not have
friends? How is it possible that all of the professionals are
predicting that my little girl will go through life without the
communal circles that bind most of us?
The other day in her music class, one of the fathers leaned
over and told me how cute Penny is. He commented on
how outgoing she is and added, It is so important for kids
to be that way. I can see Penny will always be social and
have friends. I wanted to believe him.
Considering all of the things that have thus far gone wrong,
and could go wrong because of Pennys disorder, I under-
stand it may seem odd that I am especially focused on the
friend aspect. I suppose it is because of her bodily turmoil
that I want my little girl to be surrounded by others who
will love her as unconditionally as I do.
36
The birthday party I am throwing for her takes place in two
weeks. To say that Im a wreck about it would be exaggerat-
ing, but I am uneasy. I have invited ten little ones (none, by
the way, from the moms group), and I figuratively bite my
nails in the same manner Penny literally bites hers as part of
her daily fidgetiness. I will continue to do so until we arrive
at the large gardens with the owl cupcakes and owl party
have not told my little girl who I invited. She gave sugges-
tions and I followed her lead, but I have not spoken much
about it, other than generating excitement over the fact that
its her birthday. I dont want her to be disappointed. Yes,
it goes with life, but I can make an exception for a four-
year-old on her special day. I think at least four kids will
show up and I know that Penny will be ecstatic when she
sees them. I think this is how I will approach it as we move
through her tweens, teens, and adulthood. I will silently
expect a few friends, but I will hope for more. Im sure the
professionals would smile at me with sympathy, feeling
that I am grasping. But I will never tell Penny what they
have predicted. Chromosome 17 may determine many bio-
logical limitations, but I wont allow it to determine social
limitations. I see how she gleefully approaches people and
accepts them into her life. I see how she believes she will
always have friends. And despite the prognosis, doctors,
therapists, mean kids, awful moms, and the occasional mal-
function of neurons, I have realized that I believe in Penny,
too.t
 POETRY

Yuan Changming

Hallucinations
1/ Photism

Although born with weak vision

I always enjoy watching the stars
Bluish or silver
Getting filtered
One after another
Out of the cosmos
And seeing them
Falling right
Into the boldest pages
Of history

2/ Phonism

Even in the dead

Heart of night
I often hear
A short blunt saw
Working aloud
As if to fell
The old tall oak tree
Standing high against the sky
On an unknown hilltop
Beyond the map
Of my mind

Are you listening to what you have heard

Or can you hear what you are listening to?

37
FICTION
Howd You Meet Your Wife?
Con Chapman
T
he boysMark and Stevenwere giggling at din-
ner, looking down at their phones under the table,
which was forbidden in the Preston home.
Put your phones away, their mother said. You know the
rules.
The two burst out in laughter at the same time, causing their
father to intervene.
Guyscmon, you heard your mother.
Hes so funny, Mark, the younger, said.
Who are you talking about? their father asked.
Ricky Theobald, Steven answered. Look at this, he said
as he handed his phone to his father, who took it and turned
it off.
Perhaps this will put a lid on things, he said as he put it in
his pocket. Mark?
His father extended his hand and Mark gave him his phone,
but not before he broke out laughing one last time.
What did he say? Steven asked.
He wants to know my birthdayhes going to tell me
what day of the week I was born on.
Whoever it is, he must be pretty smart if he tells you that,
his mother said.
38
Hes autistic Mom, Mark said. With the source of his
amusement removed, he picked up his hamburger and be-
gan to eat.
I dont think its very nice to laugh at someone just be-
cause he has something wrong with him, their father said.
You can laugh at people for things they can changelike
theyre cheap, or they brag, or something like that. You
dont laugh at people for things they cant change and that
arent their fault.
Its okay, Dad, Steven said. Ricky doesnt mind.
He probably doesnt even know youre teasing him, their
mother said.
I think he knows but he doesnt care, Mark said.
So you admit that you tease him? their father said.
The boys pursed their lips and shook their heads inconclu-
sively while they tried to decide how to respond.
You cant avoid him, Dad, Steven said. He comes right
up to you and starts bugging you.
He has no sense of personal space, Mark said.
Still, I think you could be a little more sensitive, their
mother said.
We have fun with Ricky, Steven said. And he has fun
with us. If we ignore him he gets mad.
Hed rather be around us than lonely, Mark said.
A quiet descended on the table as adults and children ob-
served a temporary truce in the wars of parental discipline.
The parents recognized that their children had a point. The
sons didnt press their temporary advantage too far, fearing
an escalation.
I tell you what, their father said.
What? Mark asked.
If you guys want to prove to me youre serious, and you
arent just being mean to this boy, why dont we invite him
along to the lacrosse game? Mr. Preston had a block of
tickets to see the new local indoor lacrosse team for Ste-
vens birthday. Hed bought them at a discount through his
firm, which did some work for the teams owner.
The two teenagers sat in silence. Mark shrugged, Its fine
with me, its not my party.
Stevens eyes made the circuit around the table, from his
brother, to his father, to his mother. I dont care. Every-
bodys cool with Ricky.
How many tickets did you buy? the mother asked.
Twenty. I figured twelve or thirteen kids, and the rest for
me and any dads who want to come along. Would Rickys
dad like to come? he asked Mark.
His parents are divorced. He lives with his mom, his dads
in New York.
If he cant come, fine, but I want you to at least ask him.
Mark shrugged and gave his father a look of adolescent in-
difference, as if the punishmentsince thats what it was
would have no effect on him.
In truth, he didnt think it would because Ricky was in fact,
a fun, if sometimes annoying companion. He would say
things out loud that others would only mutter under their
breath, or behind an adults back, like Hey Mr. Byrum mother got out and the two stood talking so quietly that Mr.
the assistant principaldo you really dye your hair?
When he would come out with such cracks in a perfectly
innocent tone of voice and a straight face, it was hard not to
find him likeable.
But the invitation, which Mark made in a jovial manner,
touched off a manic phase in Rickys life. He was so excited
at the prospect of joining other boys on an outing, and one
not under the auspices of the school, that he could talk of
little else in the two-week run up to the event.
Hey Evan, are you going to the lacrosse game with Mark?
he asked one boy out loud in the cafeteria, causing some
hurt feelings among two boys on the fringes of high school
social acceptability who had not been invited. Why had
Mark chosen to invite Ricky, they wondered. Was there
something so bad about them that he preferred a handi-
capped kid to them?
Im going to a lacrosse game with Mark! he had blurted
out in social studies class one day when the teacher had
asked if anyone wanted to discuss a current event.
That was very nice of you to invite Ricky, said Mrs.
Formana gray-haired, bespectacled teacher with a formal
mannerwho tried to incorporate ethical principles into
her instruction. Mark smiled but simmered silently within,
avoiding the admiring smiles of girls he had no interest in.
When the day of the game came, Mark and Steven had
basketball practice after school and their mother was out
with friends, so their father was home alone when Rickys
mother pulled up in a car. It was a foreign sports car that
had gone to seed a bit with age and hard use during New
England wintersthere was a thin ring of rust around the
wheel wells, and a ding in the front fender. He suspected
that she hadnt made out well in the divorce, and hadnt
much in the way of marketable skills to maintain an affluent
lifestyle and care for a hyperactive, loquacious boy at the
same time.
Ricky got out of the passenger side and started to run for
the house, but his mother stopped him with a sharp call.
Ricky, hold on a minute.
Ricky went around to the drivers side of the car. His
39
Preston couldnt hear them. He had come out on the front
porch to greet Rickys mother, but when he saw they needed
time together he stepped back inside and out of their line of
sight. He peeked around the doorframe when he heard the
boy begin to run again, and he opened the door to say hello.
Hi Mr. Preston, is Mark home? Ricky blurted out. Is his
room upstairs?
His boys were dropped off by their
carpool and entered the house,
where Ricky greeted them like a
happy dog, talking even more
excitedly than before.
The boy blew past the man and was up the stairs in three
bounds, then down the hall to inspect the room of his class-
mate. The man watched him go, took a few steps up and
said Hell be home in a little while. Would you like some-
thing to drink?
No thank you, Ill just look around. Does Mark have any
models, like airplanes or cars? Do you let him have a BB
gun?
Uh, no to both. Why dont you come on down, the guys
will be home in a minute.
Thats okay I want to look in Stevens room. Ricky
moved down the hall at a rapid but controlled pace, as if he
was on tracks, then entered the older boys room.
I, uh, dont think Steven would want you in there.
Thats okay, itll only take a second. Does Steven shave?
Does he wear after shave? Does he have a girlfriend?
The man smiled. You ask a lot of questionsand very
quickly too.
I know but I have a lot of questions in my mind. Ms. For-
man says its good to ask questions; there are no bad ques-
tions; then she tells me not to ask any more questions.
The father listened while Ricky puttered around in Stevens
room. The boy had a nervous energy that he was not pre-
pared for. He had been expecting a quiet boy after having
heard the report of his ability to calculate dates many years
in the past.
40
His boys were dropped off by their carpool and entered the
house, where Ricky greeted them like a happy dog, talking
even more excitedly than before.
Did you guys win your game? he asked.
It was just practice, Rick, Steven said.
So you didnt keep score?
No, Mark said. Thered be no point, it doesnt count.
Two more cars pulled into the driveway, one dropped off
two boys and drove away, the other parked with two boys in
the back seat and a father, Will Harris, in front.
Anybody need a ride? the man asked out his window as
Mr. Preston came out to greet him.
Those two who just arrived, he said. The others are go-
ing straight to the game from their homes.
The two boys got into the Harris car and Mr. Preston gave
Mr. Harris five tickets, waving as they drove off. He went
back into the house and told his sons to get their coats and
get in the car. Ricky walked with Mr. Preston to the garage
and on the way noticed a picture of a much younger Mrs.
Preston, when her hair was long, touching her shoulders
with a flip.
Where did you meet Mrs. Preston? Ricky asked.
We met in college, Rick.
Howd you meet her?
It was at a dance.
Did you just go up and talk to her?
Lets see. There was a bunch of us standing around, and
we found ourselves next to each other. The others started
dancing so we did too.
Did you take breath mints before you went?
Preston laughed. He could remember worrying about things
like that when he was in college, and figured it was a good
sign that Ricky cared enough about his effect on others that
he did as well.
I think I probably did, Rick.
Once they were on the highway into the city his boys be-
came subdued, laughing in low tones as Ricky peppered
them with questions.
Do you play lacrosse? he asked.
I do, he doesnt, Steven said.
Is it hardcould I learn?
You have to be able to catch the ball with your stick.
Is it different from baseball?
The boys laughed. Yes, Mark said. Just because they
both have a stick and a ball doesnt mean theyre the same.
How are they different? Ricky asked.
At first Ricky was enthralled by the
scale and pace of the placethe
convex of the dome above, the
players warming up on the floor,
the scoreboard with flashing lights
and loud music.
Well, the big difference, Steven said in a tone that reflect-
ed his critical view of the relative merits of the games, is in
lacrosse you can hit other players with your stick.
You can? Ricky asked, incredulous.
Yeah, to try to knock the ball out of the other players
stick, Steven said.
Are there fights?
Not really. You get your aggression out just playing.
Ricky turned quiet, and gazed out the window. It had started
to rain, and the cars tires made a sound like wish which
went down in pitch as they slowed to pay the toll at the end
of the turnpike.
How much does it cost to go to a lacrosse game, Mr. Pres-
ton?
Dont worry about it, Rick. I got a bargain on these.
But how much would it cost if I bought a ticket for my-
self?
I dont know. Not as much as basketball or hockey. He
didnt want to go into too much detail for fear the boy
would try to pay him.
They parked in a lot near the arena and met some others
at a statue of a hockey player outside, their agreed-upon
landmark. Mr. Preston handed out the rest of the tickets, and
they joined the stream of people flowing into the narrow
walkway that fed into the entrance.
You guys watch Ricky, Mr. Preston said. Try to steer
him away from strangers.
Hes a pretty big guy, Steven said.
People can get crazy in crowds, you never know whos go-
ing to flip out over nothing in a situation like this.
They climbed two ramps to a mezzanine where their seats
were located, and the boys and men began to sort them-
selves into two groups that sat together by age. At first
Ricky was enthralled by the scale and pace of the place
the convex of the dome above, the players warming up on
the floor, the scoreboard with flashing lights and loud mu-
sic. The rest of the boys were veterans of the venue, having
attended games there since they were little, and so focused
instead on gossip, checking their phones, cracking jokes,
and horseplay. By the time Ricky had taken in the spectacle
before him, he found he was outside the flow of the groups
conversation. He turned to the adults, who were chatting
quietly among themselves.
How did you meet Mrs. Harris? Ricky asked Mr. Harris,
who was startled both by the substance of the question and
the blunt manner in which it was asked.
Huh? was the only reply the man could produce at first.
Mr. Preston realized he should have briefed the other fa-
thers on Rickys condition.
How did you meet your wife?
Well, we, uh, worked together when we were both starting
out.
Do you have a picture of her then?
No, I dont.
Mr. Preston moved to steer Ricky away from the men,
standing up and calling out to his sons.
Mark, Steven.
His sons looked up.
41
Why dont you guys take Ricky and get hot dogs and
drinks? As he said this he nodded at Ricky, who was stand-
ing up and facing the group of seated men like a lawyer
speaking to a jury.
The three boys went off with a few of the others to the con-
cession stands, and Mr. Harris gave Mr. Preston a quizzical
look.
He has autism. I . . . uh . . . encouraged the boys to invite
him. To . . . include him in their activities, Mr. Preston
said, omitting the boys perceived misbehavior that had
prompted him to do so.
Oh, Mr. Harris said. Well, that was good of you to do.
Like a lot of kids with autism, he has incredible mental
powers for some things, like doing numbers in his head, but
hes pretty, uh, primitive in his social skills.
The men nodded with pursed lips and distant looks in their
eyes, as if imagining what their lives would be like if they
had sons like Ricky.
The boys returned with cardboard drink carriers, popcorn
and hot dogs, then settled into their seats as a booming
voice came over the loud speakers to ask the audience to
stand for the national anthem. Ricky was late getting back
because he had stopped to buy a pennant as a souvenir, and
so he took the seat at the end of the row.
The boys lowered their voices as a florid singer launched
into The Star Spangled Banner, but Rickymissing the
announcers cue and not very sensitive to ceremony in the
first placecontinued to talk loudly, drawing stares from
people around him.
The game began and the boys were, on the whole, attentive
to the action. Ricky was the exception, continuing his chat-
ter, asking questions whose relationship, one to the next,
was apparent only to him, in a voice that projected several
rows from where he was sitting. The crowd was sparse,
though, so there were fewer people to be disturbed by his
logorrhea and so no one objected.
The action held the boys attention for awhile, but soon
their interest began to fade, most visibly in Rickys case.
He returned to his inquiry into how men meet their wives,
and after asking all of the fathers he hadnt asked before, he
turned to the boys who came by themselves.
Do you know how your parents met? Was it in school?
High school or college? Did they ever break up? What do
your dads give your moms for Valentines Day?
42
When you get through, youre gonna know everybodys
love life, said a young man in the row behind the group
who sat with his arms and legs draped over the empty seats
on either side of him. What you wanna know all that crap
for?
Its very important, Ricky said with a trace of defensive-
ness. Its the most important thing in the world, who you
end up married to.
Not me, man, the young man said, as he lifted a cup of
beer to his lips. I aint never getting married when I can
get what I want for free.
Ricky turned around to face the game, his lips pressed
tightly together. He felt the need for someone outside the
group, someone he didnt know from school, to validate his
belief that there was nothing better than a happy home with
a mom and dad living together under the same roof with
their kids. He needed it to even up what the young man had
said. He looked across the aisle at another, older man, one
who had scowled at him during the national anthem.
Howd you meet your wife? he asked the man.
Thats none of your goddamn business kid, and I wish
youd shut your trap sos other people can enjoy the game.
Rickys face reddened, and he stood up. Its a simple ques-
tion. I could ask you a lot more complicated questions you
couldnt even answer.
KidI told you to leave me alone. Do I have to call secu-
rity on you?
Ricky made a move to charge the man but before he could
reach him he was grabbed from behind by Mr. Preston.
Easy, Rick, easy. Lets get back in our seats, what do you
say? He signaled for Mark and Steven to escort Ricky to
the other end of the row, where the other fathers were sit-
ting.
Im sorry, Mr. Preston said to the man. He has autism,
we were trying to give him a good time. He doesnt get out
with kids his age much.
Pretty damn inconsiderate if you ask me, the man said.
Mr. Preston tried to form his face into an expression of
apology, but found that he couldnt.t
 POETRY

Randy Martin

my name is Adam
another morning begins in the dark;
5:30 a.m. and struggling again with
the fear of rejection as sleep loses
its sway and anticipatory breaths
for something better than this become
the moisture laden sighs of self scrutiny
that never stop fogging the looking-glass
mirror that no one else sees; alone as
I reach to unleash whats inside, another
new mixture of medicine-cabinet-
prescribed duty, my three colored pills
to be taken with meals; one to control
appetite and another for apathy,
topped by the third which they say will
help fade the six angry voices into that
of just one; all of them wondering if
the hair loss is side effect or age or my
trying too hard to make friends with
the fuckers at work who choose not to
talk to people like me; all of them
missing out on the fact that I never
asked for these problems and that
theyre more common than they
would think; their knowing about my
having them only because I told them,
thinking it wouldnt hurt, but instead
it just pushed them away as all they
want to know now is that my name
is something like Adam, or is it,
and that Adam is weird.

43
FEATURED ART
An Artist at Heart
Sandy Palmer
Tammy Ruggles, Arrival, digital photograph, 2015, 5472 x 3648 px
Art, and even sometimes ability, is in the eye of the
beholder.
~ Tammy Ruggles
I
nstead of picking up a brush and dipping it into paint,
Tammy Ruggles decided to dip her fingertips into acryl-
ics and start painting in a tactile way when she became
legally blind. As strange as it may sound, it made perfect
sense to her. She couldnt see the tip of a paintbrush but she
could feel her fingers gliding on the paper. In her minds
eye she could see the rural landscapes of Kentucky with
its barns, creeks, fences, trees and rolling hills, even if she
couldnt actually see them very well anymore. Intuitively
she began to stroke, swirl, and blend the colors. My lines
would be off, my colors would be incorrect, my representa-
44
tions would be suggestive, and abstract . . . . She accepted
it for what it wasa new way of creating art.
Ruggles always enjoyed art but never considered it as a
vocationit was always more of a hobby. She had a pas-
sion for helping people and pursued social work in school,
choosing literature and art classes as electives. After receiv-
ing her bachelors degree in social work and a masters in
adult education/counseling she became a social worker. She
pursued her passion for ten years and was working for child
and adult protective services when her vision began to dete-
riorate. Driving was a requirement of the job in rural Lewis
County, Kentucky, and when she could no longer drive, she
was forced to retire. I became legally blind at the age of
40. I lost my profession, my ability to drive, and my place
in the world . . . I lost my identity.
 Tammy Ruggles, Ben Cartwright, Sharpie marker sketch, 2013, 8.5 x 11
With a lilting southern accent, the artist explains that she
began wearing glasses when she was only two years old.
I always wore glasses but lots of kids wore glasses. My
mother never sat me down and said, Hey, you have this eye
problem and youre going to lose your vision. I appreci-
ate that in a way. I never felt like I was that different from
anybody else. I always held books up close to my eyes. I
always put my head down close to my paper to draw. I sat
in the front row so I could see the blackboard. As a little
girl I didnt seem to notice it and it didnt seem to bother
me. I was so used to it that it was just a part of who I was.
It wasnt until she was 40 years old, when she had to retire,
that she really felt the impact of her visual impairment. It
was also then that she received a formal diagnosisretinitis
pigmentosa.
Raising a young son, she worried about how she would pay
her bills and make ends meet, especially since she could
no longer drive to a typical job. After taking two or three
months off to adjust to the realities of her new life, she
says, I decided I would have to think of some other way to
contribute . . . I began to wonder if I could turn my passion
for writing into a profession. She began writing a small
column about parenting and social problems for the local
newspaper. She also submitted articles to magazines and
websites and began making money by writing, sharing her
expertise, and sharing her story.
With computers and adaptive software, she was pursu-
ing her love of writing but felt that art might be beyond
her grasp. She could no longer see well enough to sketch
celebrity portraits with black Sharpie markers the way she
used to when she was younger. Someone suggested that she
try finger painting. She admits that the thought of a blind
painter might sound a bit absurd. Since she would be able
to feel what she was painting and rely mostly on intuition,
she was intrigued and decided to give it a try. I know my
finger paintings miss the mark when it comes to perfect an-
gels, perspective, and other elements, but I trade perfection
for the joy and pure harmony I express when I paint images
I recall from my childhood in Kentucky. She was encour-
aged by fellow artists and mentors and the feedback she
received was mostly positive.
45
 Tammy Ruggles, Yellow Landscape, acrylic finger painting, 2013, 8.5 x 11
Before long, her paintings were accepted by a few local
galleries and published in literary magazines and art jour-
nals like Vibrant Life and Art Times Journal. The satisfac-
tion of sharing her creativity with others was enhanced by
the opportunity it gave her to use her art to help others by
showing them art is possible for people who have visual
impairments. She began painting in 2013 and by the end of
the year she had completed a few hundred finger paintings.
She was happy with what she had created and no longer felt
driven to paint. It was time to move on.
As a young girl she enjoyed taking pictures but didnt take
photography classes in college because back then 35mm
film was used in cameras and film had to be developed in a
traditional dark room. She had night blindness and couldnt
see anything in the dark so she wouldnt be able to develop
her photographs. She also had trouble seeing all of the di-
als and settings on cameras. She says, The funny thing is,
I was always a fine art photographer in my mind and in my
heart. She even has a picture of herself when she was five
years old with a camera around her neck.
Since the way we take pictures has evolved over time, Rug-
gles began to wonder if she could try her hand at photogra-
phy now, since digital cameras have auto focus and theres
no need for a dark room to develop film. She says, The
thought seemed ridiculous at first. A legally blind photog-
46
rapher? I was under the impression you had to have good
vision to take pictures. But the more I thought about it, the
more the idea grew inside of me, like a seed.
She decided to buy a point-and-shoot camera and it sat
on the kitchen counter for several days before she worked
up the nerve to give it a shot. Oddly, it was the positive
feedback I received from my finger paintings that gave me
the final nudge to take my camera out of the box and push
the power button. She walked around the yard, took some
pictures, transferred them to her computer, and viewed them
on her large monitor. When she did that, she was able to see
things in the photo she could not see with her eyes. She dis-
covered the camera could see for her and show her what she
was missing. Having RP dictates my style, in a way. I need
to do high contrast black and white because I can see it bet-
ter. I do color to a lesser degree because colors are harder
for me to distinguish. As beautiful as they are, colors in a
picture all blur together and I cant make out what things
are very well.
Just as she did with her writing and finger painting, she be-
gan submitting her photographs to magazines and journals.
Some of her photos have been published in Midnight Echo,
Pentimento, Floyd County Moon Shine, The Notebook, and
others. I use my art instincts and my art education to take
the pictures, and I let the camera do the work. When I look
 Tammy Ruggles, People Admiring a Newborn, acrylic finger painting,
2013, 8.5 x 11

Tammy Ruggles, Birds, acrylic finger painting, 2013, 8.5 x 11

47
 Ruggles, as early as age five, showed an interest in photography.
at it on the computer, with the large screen, it comes alive.
The camera catches everything. She was driven to take
pictures for about two years, feeling compelled to prove
that she could do it. And she did. Shes a legally blind pho-
tographer who has been recognized for her work. When I
get ahold of something like that, I feel like Im going to lose
it so I get really compelled to do as much as I can while I
still can.
It is no longer a compulsion. She takes pictures for the
sheer joy of it now. She still carries a camera with her wher-
ever she goes because, it is the worst feeling in the world
to see something that would be a good picture and not have
a camera to capture it.
I was scared to pick up that camera when my vision got
worse because I thought it was something I wouldnt be
able to do. I had written before so I knew I could do that.
I had to take a little step of courage and I found inclusion
through photography. I found acceptance as an artist. I had
doubts. What if it wasnt good? What if they laugh? Maybe
it will be terrible. Why am I doing this? But I found that
people did accept me and include me as an artist. I felt vali-
dation. I wanted to see if it was possiblenot just among
people in the visually impaired community but the art com-
munity in general.
48
Tammy Ruggles
Look through the viewfinder of a DSLR camera, slowly
turn the focus ring, and bring the subject into sharp focus.
Perfect. Turn the ring as far as it will go in the other di-
rection and everything is out of focus. Thats the way the
world looks to artist Tammy Ruggles. Everything is blurry.
And its getting blurrier. Her Sony RX100 captures every-
thing. When she looks at photos on her forty-seven-inch
screen it connects her to the visual world. Magnifying the
image helps her to see what she missed when she took the
photo. She delights in seeing expressions on the faces of her
grandchildren, her grandsons ever-changing hairstyles, or a
flower in a field that she wasnt able to see before.
She doesnt photograph people often but says she especially
likes photos shes taken of her family because she is able to
see what they look like on her screen. Regarding her other
photos, she says they keep her connected with creation. The
artist is retired and enjoys spending time with family and
friends. Im just letting things happen now without push-
ing anything. Im not stopping out of frustration. Im happy
with what Ive done.
To see more of her work visit http://tammyruggles.
deviantart.com/gallery/.t

Go Fish
Andrea Carlisle
M
y sister, Marla, liked to play cards. Specifically,
she liked to play a game called Go Fish. During
her lifetime, we played many thousands of games
of Go Fish. You can play with two people.
The rules are simple: Deal six cards to each player. One
player asks the other for something she already has in her
hand. For example, if I have a five in my hand, I may ask
if you have any fives. The goal is to accumulate pairs. The
pairs pile up. Whichever player ends up with the most pairs
is the winner. If you have a card I ask for, perhaps that five I
mentioned, you must give it to me. I take it and put the two
fives down together on my side of the table. If you do not
have the card I ask for, you tell me to Go fish.
The thirty-sixth anniversary of Marlas death fell on a Mon-
day this year. She died on my fathers birthday. He died
twenty-one years after she did. Twenty-one sad birthdays.
A few days before the anniversary, my ninety-nine-year-old
mother, Alice, seemed to be on and off track about my sis-
ters life. She could remember some things, but not others,
things I thought she would never forget.
Who put the deck of cards in Marlas hands at her funer-
al? she asked me one day. Did you?
It was my father whod made sure she was buried with a
deck of cards. The family agreed she would like that. I was
the one who put an amber necklace Id brought back from
the Middle East around her neck. She loved music and the
necklace had tiny silver bells attached. None of us could
PERSONAL ESSAY
imagine her going anywhere without music.
A few days later, Alice asked the same question about the
cards, and I answered.
Did I already ask you that? she said. Whats wrong with
me, anyway?
I knew her memory had failed her even more seriously
when she asked why. Why did Roger put cards in her
hands?
I reminded her of how much Marla loved playing Go Fish.
Alice frowned. Did she?
All our family members played Go Fish with Marla many
times. Alice, my brothers, my father, or I sat with Marla on
the sofa, at the kitchen table, on the front or back porches
of our various houses, in the car, in waiting rooms, at the
homes of relatives and friends:
Do you have any jacks?
No. Go Fish.
Do you have any sevens?
Go Fish.
Game after game after game with red Bicycle cards. Wed
worn out a deck of cards by the time she was ten. My par-
ents bought her a new deck.
49
Do you have any eights?
Go Fish.
Do you have any twos?
Yes!
Sometimes we played first thing in the morning. Marla
brought her coffee cup to the game with her. She liked cof-
fee with lots of milk in it. She was the only child in the
house allowed coffee, and she was the youngest. She sipped
her coffee while we played.
When I left for college, we continued to play on my visits
home. We played every time we saw one another long after
Id graduated from college, until she died at twenty-seven.
I dont know how long the second deck of red Bicycle cards
lasted. Maybe a long time. But it was probably her third,
fourth, or even fifth deck that was placed in Marlas hands
the day wemy brother, Michael, my parents, and Iat-
tended her funeral and said good-bye for the last time.
It disturbed Alice a great deal that she had no memory of
Marla playing cards. Why cant I remember that? She
kept bringing it up and then scolding herself for not remem-
bering. So I visited the residence where she lives and found
the deck of cards Id bought for her a long time ago so she
could play Solitaire. It was a deck exactly like the ones
Marla liked best. I dealt six cards to Alice and six cards to
myself. I looked over my hand. She looked up at me expec-
tantly.
50
Do you have any sixes? I asked.
Gradually, the game came back to her. Sometimes she
would draw from the pile and her eyes would widen be-
cause she knew I had a similar card in my hand. She knew
that she might have to give it up and Id get a pair. When
she did this, when she fell into that unguarded delight of
knowing and not caring that I saw her knowing, she remind-
ed me of Marla.
Did Marla know these numbers? she asked me. Did she
know the difference between a six and a two?
Yes, she knew all of them. She knew the face cards, too.
She shook her head. Why cant I remember that?
Do you have any fours? I asked.
No. Go Fish.
We played five games. When it was time for her to go to
dinner, I left the apartment and drove over to Mississippi
Street in North Portland. I planned to meet a friend for din-
ner and then attend a reading at a bookstore. I parked my
car, walked a few steps, and stopped. There, directly in
front of me, as if theyd fluttered down from the sky, play-
ing cards covered the sidewalk. Red Bicycle cards.t
 POETRY

Katie Rendon Kahn

Learning Disability
I never could get through to you.
I tried to teach you things
the way that I had learned them
but you just didnt get it.
I would get frustrated and angry
and said things I regretted immediately.
I tried new ways, new styles, new methods
when what you really needed was a routine.
I was stern when you needed kind
and too soft when you needed stable.
I was unprepared; it was never your fault.
When I read to you in clear print,
black and white
you saw rainbows
showing me spectrums
where I had been color-blind.
I tried to teach you to write neatly
and color inside the lines.
You showed me that those lines are too narrow
and its ok to draw your own.
I told you to use your inside voice;
you exploded in symphonies
that made my world sing.
So, when your teacher asked me recently
Have you considered having him retested?
I told her, There is no need,
because I already know
that you are brilliant.

Published online in The Barefoot Review Winter 2012.

Reprinted by permission of the author.

51
PERSONAL ESSAY
A Profound Teacher
in Disguise
T
he wisest teachers with the
greatest impact on your life
dont always promote them-
selves with academic robes, creden-
tialed rsums, or guru reputations. In
fact, looking for them solely in those
guises narrows your field of attention
so much you fail to spot the real sages.
The trick is to be open to wise words
and examples, regardless of what
youve been told a wise person should
look or sound like.
It was like that with me, when Frandzy
Baudalin showed up just two months
after my stroke in 1973. Actually, hed
been there all alongsitting at the
same dormitory table, three meals a
day for the past year and a half. But
the day I returned to campus and our
old table at the cafeteria, the limpness
up and down the left side of my body
and the wooden cane in my right hand
spoke for me: Carol was back in grad
school and her old room at Bromley
Hall in Athens, Ohio. Back, but not re-
ally back.
52
Carol Keegan
The stroke had nailed me, stopped me
dead in my tracks. Suddenly extricated
from old life plans and routines, and
literally unable to run from pre-stroke
tensions in my life, Id returned to cam- old dining hall table without any com-
pus with no firm understanding of what
had happened to me or how to go on. I
had just lugged my new, broken body
back there anyway, not knowing what
else to do.
Walking up to that table againthree-
legged this timeit seemed my job
was to convince these old friends to
recognize me without feeling repulsed.
If ever I knew my old self had died
and that I must muster up some new
life for myself, I knew it in the pall of
returning to our old table in the caf-
eteria. As Frandzy, Margaret, Bob and
the others saw me coming, I knew they
were shaken by the liabilities I now
embodied for them (If that could hap-
pen to Carol . . .), and I felt the power
of their needing not to be me. Not to
be in any way like me. My sudden ill-
ness had immersed me in taboo experi-
ences of near-death, powerlessness,
second-by-second uncertainty about my
future. Not even a definitive etiology
to explain my fate or show me how to
prevent recurrences.
Here I was now, moving toward the
forting storylines to soothe their fears.
Worse, I had not yet made sense of the
stroke in my own mind, so I was raw
with vulnerability to anyone elses in-
terpretations of my story. From now on,
every time I brought my new body and
its dark learnings into a conversation, I
was certain innocent healthy normals
would see little but the death in me.
Until one old friend at the table proved
me wrong.
Frandzys bodily presence at the table
was unchanged: this huge-smiling,
cerebral-palsied undergrad from Brook-
lyn, with the clenched hand and severe
stutter was his old self. Before the
stroke, my tweedy, supercharged grad
student persona had seemed to signal
we would never have much in common
beyond our Bromley Hall dorm address
and the habit of choosing the same
cafeteria table. But now, my tripod-self
seemed to elicit a new, deep alliance.
A new Frandzy emerged, determined to
make me his protg. He enrolled me
quickly in his hard-won, noncredit life-
survival course. He set a bet with me:
by April, when my parents planned to
visit, Frandzy would have weaned me
off the cane as a surprise gift to them.
He would take the cane from me, to
ensure I never willfully relapsed.
As a twenty-four year old whod fallen
one Saturday morning from Ph.D. can-
didate/adjunct dance faculty member
to stroke survivor/physical therapy
student, learning to walk again was tan-
tamount to learning to live again. Hav-
ing fallen so far, now I could appreciate
the determination with which Frandzy
had mastered both tasks repeatedly. So
I accepted the deal and set about taking
each step he called out of me. Every
day after dinner at Bromley Hall, this
mismatched pair walked the campus.
Practicing my new walk, the second Id
acquired since birth.
Quite the pair we were, walking the
hills of Athens, Ohiofirst with, then
without my cane. Male/female, black/
white, mathematician/social scientist,
Afro with mustache/ballet bun at the
nape of the neck, Brooklyn/Scranton,
explosive stuttering/bourgeois diction,
clenched joints/ataxic limbs. An odd,
odd couple immersed in our shared
progress. Wandering the campus, we
were more focused on the process of
moving than on our arbitrary destina-
tion each night. All around us were
centers of learning for every conceiv-
able field of study except the life-rein-
vention course Frandzy was helping me
improvise.
Looking back forty years, I can see
Frandzy was really one of my earli-
est life coaches. And I like to think he
gained as much from the confidence I
invested in him. I hope he knew I chose
to study with him because I respected
(as much as I needed) the rich life
curriculum he had salvaged from all
his surgeries, physical therapies, and
determination to defy the odds society
stacked against him. Desperately, I
tuned into my own need to learn how
hed done it. My pre-stroke self had
never seen Frandzys survival skills or
his generosity.
The model for our work during those
early evening walks may have been
focused on physical health concerns,
but over the years I kept coming back
to the more fundamental questions our
course of study explored:
When were at our neediest, how
do we open up our field of vision
enough to spot the wise ones
whose counsel would best sustain
us?
Once weve mixed their stories
with our own and conceived new
ways of understanding our di-
lemma, to whom can we convey
our discoveries?
How do we pass along the gener-
osity; find others who remind us
of ourselves and the deep connec-
tions we too once needed in order
to go on living?
Answers to profound queries like these
can appear, if we just throw open the
drapes in our daily interactions with
people on the periphery of our lives.
At first glance, they might not look
like philosophers, but with a little
imagination, we can choose to pause,
absorb, and emulate their rich stories of
survival.t
Previously published online
by The Rain, Party & Disaster Society.
Reprinted by permission of the author.
53
FICTION
Reinventing the Wheel
Barbara Ridley
I
wouldnt normally have been there in the afternoon.
Talk about wrong place at the wrong time. But my an-
thropology class got out early, and Id heard that chick-
peas were on sale. Two cans for the price of one, according
to Laura. So I decided to pick some up myself on the way
home. I just love chickpeas. Theres something about that
slightly crunchy texture and the not quite round shape thats
so adorable. I like to add chickpeas to just about anything:
soups, stews, salads, you name it. I also needed milk and
bread, but I thought I could still fit six cans into my back-
pack.
A light rain had set in just before I reached the store. A man
who walked in ahead of me stopped to shake out his um-
brella. It was a black, fold-up sort. Except that it wouldnt.
It got stuck as he was trying to ram it into his basket. He
stood there, blocking my passage, cursing to himself, obliv-
ious to me sitting behind him. I noticed an odd stain on the
back of his right pant leg. It reminded me of the birthmark
on Gorbachevs forehead. Sounds weird, I know, but Id
been watching a PBS special the night before on the col-
lapse of the Soviet Union, and I couldnt take my eyes off
that large red mark on Gorbachevs bald head. And now I
couldnt take my eyes off the stain on this guys pants. This
stain wasnt red, more grayish-white, but the same shape,
more or less. Just behind his knee. I couldnt figure out how
it got there, or what it might be. I tipped my head to the
side, wiped the rain off my forehead with my sleeve and
stared at the stain, trying to figure it out as I waited for him
to move out of my way.
54
He finally wrestled his umbrella into submission and moved
on. I scooped up a basket and made for the dairy section. I
pulled the fridge door towards me, propped it open with my
armrest, and grabbed a pint of milk. A pint is about all I can
manage. One percent, a compromise. I prefer two percent,
and Laura is all about nonfat, but I like tea with milk, and
the nonfat makes the tea a gross gray color, so weve agreed
to split the difference.
I knew bread was near the checkout registers, so I headed
next for the chickpeas. Id just turned the corner and was
cruising past the tomato sauce when I first heard the com-
motion up front. I heard a high-pitched scream and then
a lot of shouting and a rumbling as if a display case had
toppled over. For a split second I thought it was an earth-
quake, and I remember looking up at the stacks of Barilla
and Newmans Own towering above me, and thinking Id
better scoot further down the aisle towards something softer
like the pasta.
I should explain that this is a small store, not one of your
mega-huge supermarkets where you get totally lost and
overwhelmed. Thats why I like it. Plus, now that Im back
in school, its on my way home and most of the clerks know
me which helps. Theres talk of them expanding, or pulling
it down and replacing it with something big and fancy, but
the community is divided between those who think they
need a cereal aisle the size of a football field, and those in a
tizzy at the thought of construction and trafficso the City
Council is gridlocked worse than Congress and nothing has
been decided.
I moved a bit further down the aisle to see what was hap-
pening.
Dont move! A loud barking voice.
Stop! Everyone, stop! Right where you are.
Id reached a spot where I could see two of the checkout
stands. Doreen, the clerk who is always very nice to me,
was straight ahead, her hand clasped over her mouth, look-
ing deathly pale. Behind her a tall thin guy in a ski mask
brandished a shotgun.
Oh my God! someone screamed.
Shut the fuck up! Dont move!
The guy giving the orders was to my right, out of sight.
That means you too, Fuck-face. Dont move!
The person I assumed to be Fuck-face backed around the
corner, heading straight toward me, not looking where he
was going. I was forced to back off too, to avoid a collision.
He stopped right in front of me. It was Gorbachev-pants
again. He had a six-pack of beer in his basket, along with
his umbrella, nothing else, and he was blocking my view. I
wanted to see what was happening with Doreen, but I was
scared to move. I tipped my head and leaned way over to
the left, almost knocking my joystick with my boob.
No one moves, no one gets hurt, okay? This was another
voice, lower-pitched and almost soothing. It also came from
somewhere over to the side, beyond my field of vision.
Gorbachev-pants, who clearly hated to follow directions,
took two steps to the right. This gave me a better view, but
also left me very exposed. The guy with the shotgun now
had Doreen in a vice-grip, his elbow cocked under her chin,
and he was pointing his weapon towards my aisle. I was
directly in his line of fire.
Everything started to happen at once, but also somehow in
slow motion, like a video clip youre trying to download
that keeps getting stuck. The guys with the guns and ski
masks seemed to be everywhere. It turned out there were
only four of them, but they sure took up a lot of space. I
saw two dash behind Doreen to the managers office. Its
at the front of the store, up a couple of steps, behind a low
wall where they stack the dog food. I remember Laura go-
ing in there once when we returned a pot of moldy cottage
cheese. Now, I caught a glimpse of a thin-faced guy with
glasses and a goatee. He was new, I didnt recognize him. I
could see papers flying and heard something heavy crashing
to the floor. The guy was putting up a struggle, the glasses
flew off, and then it looked like they were tying him up and
wrapping thick duct tape across his mouth. Thats going to
hurt coming off, I thoughta genuine wax job on his beard.
I took my eyes off him to check on Doreen. She might have
screamed, Im not sure, someone did, and the next thing I
knew the asshole that had a hold of her, smashed her head
hard against the computer screen above her till. I mean re-
ally hard, several times. There was blood on her forehead
and nose. I believe I screamed then too, and a woman who
appeared out of nowhere and who was right by my side
yelled: Sweet Jesus, leave her alone!
At that point, the guy with the deep growly voice swooped
into my aisle with a weapon that looked like a machine
gun. I dont know if it was a machine gunwhat do I know
about guns? But it was huge, looked like it could have come
off a tank in Iraq. He wasnt wearing a ski mask like the
others, but a loose-fitting black hood that also covered all
his face except his eyes and mouth. He looked like Darth
Vader.
Everyone down on the floor, he shouted. Now! Face
down on the floor. Now, now, now, he barked.
He pointed his gun at the woman next to me, an overweight
black woman in her thirties. She whimpered softly and low-
ered herself to her knees, steadying herself on her shopping
cart. She wore tight purple knit pants, and as she bent over
she exposed bare flesh: large love handles both sides of her
waist, and a dip in the center at the spine. The label on her
pants hung in this gap; Petite XXL, it declared.
The gunman swung into the next aisle, continuing his rant.
Down on the floor, now, now, now!
Then he was back a few feet in front of me. He whipped
Gorbachev-pants across the face with his weapon.
55
Dont fuck with me asshole. Ill blow your head off. He
cocked his gun. Down on the fucking floor!
Thats when he turned and saw meas in actually noticed
me for the first time.
the only way out. It seemed to work. He stared at me. He
seemed flummoxed. For good measure, I thensort of in-
advertently but not reallyjerked my joystick with my el-
bow and my chair lurched forward. He recoiled and darted
into the next aisle.

What the fuck. . .? That was when I noticed the front doors: they were jammed
shut. I suppose the normal swishing sound of them opening
and closing had been absent for some time, but my mind
had been kind of focused on other stuff. The guy whod
been beating up the manager had a large blue sackfull of
For good measure, I thensort of money I guessedand he jumped down the steps to make
inadvertently but not reallyjerked a getaway. The others followed and Darth Vader turned in
a final swoop of the aisles, brandishing his enormous gun,
my joystick with my elbow and my before making his exit.
chair lurched forward.
But they were stuck. The doors were locked.

What the fuck? he screamed again.

This would have been a good moment to drool. I used to
And then I heard the sirens. El Morenos finest were on
drool a lot as a kid. They gave me some medicine for it,
their way.
which helped, but which alsowell, never mind, lets just
say it didnt agree with me. The drooling got a whole lot
Which of you motherfuckers did this?
better as I got older, but it still happens sometimes. Not
now, though. I was as dry as a wizened old witch. I tried to
He swung his weapon around again in a wide arc, but ev-
swish up some saliva from the far recesses of my mouth,
eryone except me was lying on the floor. His eyes fixed
but it was a no-go. I briefly considered mimicking a sei-
on me. Did he think Id had something to do with locking
zure. I dont have seizures, but my best friend from camp,
the doors? Surely not. But I stuck my tongue out again and
Latisha, used to have them really bad. She was also good
lolled my head to the side, just to be on the safe side. The
at pretending to have one if she wanted to get out of doing
sirens were getting louder. Darth Vader spun around, hunt-
something she didnt want to do. So I have a pretty good
ing for Plan B.
idea of how to do a seizure.
Out the back! he yelled.
But it felt a bit over the top for this situation, like arriving
all dressed up for a party where everyone else is in jeans. So
He leapt over a woman lying face down in front of the
I opted instead for looking as helpless and unaware as pos-
chewing gum and People magazine display. The others
sible. I tipped my head to the side, rolled my eyes back in
scrambled after him in a mad dash to the rear. The tall thin
my head, and let my tongue hang out. I guess you could say
one looked over his shoulder as he ran, and bumped into
I was mimicking some sort of seizure. I was definitely try-
the corner display, knocking over a stack of special-offer
ing to get out of something. I didnt want to lie on the floor.
macaroni and cheese. As they sprinted down the aisle next
to mine, for some reason I felt compelled to watch their re-
The only time in living memory that I was on the floor was
treat. It was as if being the only one standingin a manner
last year when Laura had to go visit her mom in Connecti-
of speakingI had to usher them out. So I inched myself
cut, and Cecelia, my morning relief person, tried to help
forward, carefully rounding the head and shoulders of Gor-
me with my shower. She didnt have a good grip on me and
bachev-pants and the scattered macaroni, and turned to the
then my legs did what they often dothe left one trying to
right. I watched them disappear past the frozen foods and
do the tango and the right the can-canand we both fell
through the double doors at the back of the store.
over backwards in a slippery mess. Well, we sort of glided
backwards. Luckily neither of us got hurt and we were able
Two cop cars screeched to a halt in front of the main doors.
to have a good laugh about it.
A blur of blue hunks leapt out and ran toward the entrance,
But I couldnt see me and Darth Vader gliding gracefully
to the floor. So I focused on looking as goofy as possible as

56
weapons drawn. One put his face up against the glass,
shielding the reflection with his free hand. The doors were
locked for them too.
Everyone else was still face down on the floor. Its odd
when I think about it now, but no one said a word, and no
one moved. Except a guy in front of me, right by the door.
I recognized him as one of the baggers, very young, not
more than a kid really. Hes always embarrassed when I say
anything to him. He pretends to understand me but doesnt,
and just says Yeah, ok to whatever I say. Now he propped
himself up on his elbows, peered down the aisle, and started
to crawl forward on his belly towards the managers office.
I was left on my own, close to the doors, with the cops star-
ing in at me. The rain had eased off, and a stream of sun-
I had to get away from the
entrance. I was sticking out like
Doctor Livingstone in the middle of
the African Savanna.
shine lanced through the dark clouds. I pointed towards the
back of the store. At least I tried to. I was trying to let them
know the bad guys had gone that way. But I was still feeling
pretty shook up, and my arms just sort of flailed around. I
dont know if they got the gist or not. I saw them using their
walkie-talkies but they didnt move.
But then things turned really nasty. I heard a sound like a
door slamming out beyond the frozen foods, and a whole
lot of cursing and shouting, and then Darth Vader and his
gang were back. And now, he was in a major bad mood.
He smashed a fridge door with his gun, shattering glass
everywhere. He rampaged through the refrigerated section,
splintering door after door, and then started hacking at stuff
on the shelves. Bags of chips and crackers flew everywhere
and he yelled Motherfuckers, motherfuckers at the top of
his lungs.
Evidently, Plan B had failed. The cops must have been
out back too. The gunmen were surrounded. We were sur-
rounded.
No one fucking moves! Darth Vader shouted as he made
his way up the aisle.
But I had to move. I had to get away from the entrance. I
was sticking out like Doctor Livingstone in the middle of
the African Savanna.
My heart was pounding in my chest. I crept in front of the
managers office, seeking some kind of shelter. My chair
had mercifully been in the shop the week before to fix a
loud rattling noise coming from the drive train, and I had it
on the lowest tortoise settingbut even so it seemed like it
was making a racket. I winced with each turn of the wheel,
and leaned all the way forward, trying to duck out of sight.
My basket was still on my lap, with its lone pint of milk. I
shoved it forward, dangling it off my knees.
I glanced over my shoulder. I caught a glimpse of Gor-
bachev-pants crawling on his hands and knees in that direc-
tion too. I didnt like the thought of him getting in my way
again, but I was committed to it now, so I kept going.
The bagger kid, still on his belly, had reached the steps
leading up to the office. He turned to look up at me as I
passed. Davethat was his nameI saw it on his badge
and remembered that Id sort of known it all along.
Theyre back, I said. I wasnt enunciating well because
I was trying to whisper. Im supposed to take a breath and
separate the words when talking to people who dont know
me, but I was afraid of being too loud. He must have heard
the guys anyway, I thought. For added emphasis, I jerked
my arm towards the back of the store.
Yeah, OK, he said.
Perhaps this is all he ever says.
Then I heard more commotion from the back: screams and
more cursing, the f-word bouncing off the walls, coming
closer. I spotted a hiding place to the side, behind the flo-
rists stand. I managed to position myself behind the roses
and the spring bouquets. I sensed a movement at my feet
and realized Gorbachev-pants was squatting behind the
azaleas. Goddamnit, I couldnt get rid of him. He gave me a
weird look, I couldnt figure it outit was like he couldnt
take his eyes off me, and it suddenly struck me that maybe
he was coming on to me. I was wearing my jaunty green
and black scarf that everyone says is so becoming, and
which coordinates with my green neon frame and spokes.
He wasnt so bad looking himself now that I stopped to
think about it: sort of old, maybe forty, but with bright blue
eyes and an angular jaw. A gash across his right cheek,
where hed been hit with the gun, and a bruise developing
over his cheekbone added a certain rugged appeal.
Another scream brought me to my senses. This was no time
to flirt. Darth Vader and one of the ski-mask guys marched
57
toward the front of the store, each brandishing their weap-
on, and each propelling a customer in front of him as a
human shield. Darth Vader had hold of an elderly woman
by the scruff of her neck, practically lifting her off her feet;
she dangled like a marionette, clutching her purse to her
chest. Ill never forget the look of utter terror on that poor
womans face. Her eyes were popping out like saucers and
her mouth gaped wide, the veins bulging in her neck.
A surge of rage boiled up from somewhere deep in my bel-
ly. Images flashed in front of me like a series of pop-up ads:
Nurse Ratched forcing me into cold metal braces the day
after my leg surgery when I was ten years old; the jerk who
stole my cell phone from around my neck on the number 19
bus; the faceless bureaucrat sitting in a warm, dry office in
Peoria, Illinois telling me no, they would not cover repair-
ing my chair after it got stuck on campus in a rainstorm,
because it was not medically necessary. Up until this point,
Id felt scared but not mad. Now, I was furious. I think
thats what got me revved up for what happened later.
I didnt have a great view of the front doors from there,
but I could see enough to tell there was now a huge police
presence outside. They must have rushed in from the whole
tri-city area. I got a glimpse of a fire truck and red and
blue lights flashing across the rain-soaked parking lotthe
whole shebang. Darth Vader dropped his hostage onto the
floor in front of the managers office, and kicked her in the
ribs. She yelped in pain.
Get the fuck in there, he yelled. Then he pointed his gun
at where Dave must have been crouching. In the office, all
of you.
The other guys began rounding up the rest of the custom-
ers, seven or eight of them altogether, herding them up the
steps. The woman in the purple knit pants cried Sweet
Jesus, sweet Jesus, over and over until one of the guys
kicked her in the stomach.
And then I saw Doreen. She had been hiding under the cash
register, but the tall thin guy wrenched her into a standing
position. She clutched a wad of blood-soaked Kleenex to
her forehead with one hand, and held her cell phone in the
other. She tried to hide the phone behind her back, but he
tossed it to the floor and poked his gun in her ribs. As she
was yanked away, she turned her head in my direction. Her
forehead was a mass of congealed blood. She gave me this
intense look. I didnt get it at first; I guess I just thought she
was worried about me. Yet she kept staring at me. I had the
sense she was trying to tell me something. I just couldnt
figure it out.
One of the other guys approached the flower stand and
kicked Gorbachev-pants in the butt; he scampered to his
58
feet and joined the others. I thought he would look back at
me but he didnt. The gunman now stood right next to me.
He hesitated. He loosened the mask where it clung to his
neck; I could tell he was sweating underneath. I caught a
glimpse of bare flesh at his collar bone: coffee-colored skin
decorated with a tattoo, a teal and scarlet serpent curled
around vine leaves. I quickly looked away and remembered
my helpless pose, lolling my head to the side.
Hey, T.J. he yelled across the store. What about the re-
tard?
T.J. huh? Even at this distance I could tell that Darth Vader
was none too pleased at this revelation.
You fucking idiot, he barked. Get your ass over here.
He left me and dashed toward the office. The customers
could not all fit inside; some were sitting at the foot of the
steps, and Doreen sat with her back against the wall. One of
the gunmen crouched in front of them; the others were flat-
tened against the stacks of dog food, their weapons trained
on the main doors.
And then nothing happened. No one moved. No one said a
word. I could hear the muffled sounds of the police walkie-
talkies outside, and the faint hum of the fluorescent lights,
nothing else. We seemed stuck in a time warp. I couldnt
tell if it was minutes or hours. One of the gunmen slumped
down on his haunches, his head between his knees. I felt
stiff, I needed to stretch, but I was afraid to recline my chair
because of the sound it would generate. I loosened the scarf
around my neck and shook my hair free. I tried as best I
could to rotate my shoulders. The stupid basket was still on
my lap. I considered dropping it to the floor, but any noise
seemed taboo. Good thing, because I was going to need that
basketthough I didnt know it yet.
I was maybe twenty-five feet from where the others were
gathered on the floor. I noticed some movement at the edge
of the group, and realized Doreen was waving at meever
so slightly, her hand hidden between her legs. She glanced
over at the gunmen, and then she stared at me, somehow
lurching her eyes to the left without moving her head. I
turned to look behind me and then looked back at her. She
nodded almost imperceptibly, just an inch or so, and then
she started to gesture with her pointer finger, like a baseball
catcher, and then her thumb, pointing to the left. I looked
behind me again, gently, quietly moving my chair, just a
quarter turn. I saw the magazine racks and the Clearance
Items 60% Off stand, laden with leftover Easter candy,
crumpled cookie packages, and dented cans of fruit. I
looked back to Doreen. She did that thing again with her
eyes, more urgently this time, darting them back in her
head, and jerking her thumb back and forth. I turned my
chair a little further.
And then I saw it. Way in the corner, beyond the magazines.
Another door: Emergency Exit Only.
I looked at Doreen, my eyes wide. She glanced at the
masked men, still huddled by the dog food, all their atten-
tion focused on the front door. She gave me another tiny
nod.
I knew what I had to do. I quietly, quietly turned my chair
all the way round, and then switched into hare speed. I
stabilized the basket on my lap and opened the throttle, full
speed ahead. I knocked the corner of the clearance display
as I passed, and could hear items falling in my wake, but I
surged onward, charging closer and closer, hoping to good-
ness I would be able to open the door. It had one of those
emergency push bars across its width. As my footplates
made contact, I used the basket as a battering ram and
pushed down with all my might. I didnt have it at quite the
right angle; the basket skidded and almost fell off my lap,
but I caught it and tried again, lifting it higher and slanting
it more towards the floor. The bar gave way and my chair
barged through.
I landed in a posse of heavily armed police officers. They
gaped at me in disbelief. One jammed his foot in the door to
prevent it closing behind me and peered cautiously inside.
I turned and sailed across the parking lot, my hair flying
behind me in the breeze.t
59
REVIEW

One Animals Healing Power

Review of Dog Medicine: How My Dog Saved Me from Myself, Julie Barton,
Think Piece Publishing, November 2015

Allison M. Loose

J
ulie Bartons Dog Medicine memorializes the dog
that helps her heal from debilitating clinical depres-
sion. Through vivid depictions of her mental state and
simple language steeped in New Age philosophies, Bartons
memoir journeys towards rehabilitation and recovery.
mind: Take a deep breath. Slow down. Pet Bunker. Dont
think. Just be. She sees in him a kindred spirit who warms
the cold world. As she begins to return to herself, she finds
that strangers extend compliments to her, and friends soften
in sympathy.

Lacing flashbacks to her childhood within the chronologi- New Age language links her life to Bunkers. From the mo-
cal narrative, Barton exposes her tortured, self-lacerating ment she holds her puppy in her arms, she feels her spirits
thoughts. She pairs her psychiatrists official diagnosis with lift. When he rolls around in the mud and earthworms, she
the self-loathing she has internalized from years of dealing sees a connection between his love for worms [that] in-
with an abusive sibling: Ugly, Weird, Stupid, Fat, Unlike- visibly feed the soil and his role in her own life: he was
able, please meet your newest teammate: Depressed. In feeding me, giving me essential emotional and spiritual
1996the year of her breakdownthe words clinical nutrients. Similarly, she indulges in imagining that dogs
depression had hardly entered public discourse; instead, choose their owners and Bunker knew to wait for me.
bad days and rough patches excused her systemic In these comforting images of spiritual connection, Barton
unhappiness. As early as she can remember, she endured leashes Bunkers life to her own. He gives her a reason to
verbal and physical assault from her brother, Clay. Memo- live. Soon she determines that the two, bound by fate, epito-
ries flood forth in which he punches her, calls her a slut, mize the perfect pair. Just as depression paralyzes Barton,
breaks down her door, and puts graffiti on the doorframe. she perceives a parallel when severe hip dysplasia immobi-
Inevitably, his words scar, just as the insults he inks into lizes Bunker. To fund and care for him during his physical
her doorjamb remain. His cursesLoser, Lesbian, recovery from corrective surgery, she must first heal her
Whore,promote acerbic thoughts that lead to a desire to own mental wounds.
end her life.
The obstacles of depression present no easy answers. Yet,
Barton historicizes her path to recovery by placing her dog, ironically, Bartons memoir moves briskly. In simple, ac-
Bunker, at the center of her healing. With Bunkers entrance cessible language, Barton brings readers inside the dark
into her life, and his light-hearted joy and nonjudgmental thoughts of her internal struggle. The second half of the
kisses, the blackness of [her depression] loosen[s] its book shows her determination to move on. As anyone wit-
grip. Along with the confidence she recovers in therapy, nessing a similar storyin a friend or siblingcan attest,
Barton finds that her dogs presence staves off the flood Bartons narrative will stir readers with her testament to the
of self-deprecating language always running through her potency of dog medicine.t

60
 POETRY

Nancy Scott

Dress-up
Someone gave my mother the mink stole
and when I asked to touch it,
she said yes.
And when I asked to wear it
in my bedroom for a few minutes,
she said yes.

It was the only time I wanted

the mirror to be a mirror
and not an inconvenient
piece of glass
that trapped my unseeable handprints
of accidental passage.

I was six but I somehow knew

about parading back and forth
in front of mirrors
that would reflect me
back to me without
my knowing what they saw.

I walked for twenty minutes

or two hours, not minding
that I couldnt see, not minding
that my mother couldnt buy a mink.

Later, I would learn

to be grateful not to see
my cloud-eyed image in mirrors.
Later, I would learn
the mink wasnt real.

Previously published in Wordgathering, September,

2012. Reprinted by permission of the author.

61
FICTION
The Complete Works
of Min-Ju Kim
S
unlight streaked gently into the
dark room through the blinds and
settled on the blanket that cov-
ered Min-Jus curled-up form beneath.
She turned sluggishly, raised a piece
of the fabric off her head and peered at
the clock. 11:04 a.m. Late, by all stan-
dards. Which was the real her, really?
This . . . creature, awakening with the
heavy hopelessness that seemed to be
the unspoken condition of existence,
or the one who could get up and carry
on despite it, even if doing so felt like
pretentious fakery, a sad theatre? Even
the furniture, in its material neutrality,
seemed to mock her. She drew the blan-
ket over her head again, pulled herself
into a fetal position and squeezed her
eyes shut, but sleep didnt return. In-
stead, the jagged, disturbing knowledge
of the accumulating wasted mornings
bore down on her, like boulders rolling
down a mountain slope.
She could hear Hyejin moving about
upstairs; her sisters disoriented foot-
steps moving from the bed, evolving
into more determined ones as she went
through the business of starting the day:
62
Tristan Tavis Marajh
the teeth-brushing, gargle and spit, no-
nonsense shower, breaking a bite off
an apples flesh in the kitchen. Min-
Juuuu, Hyejin implored, putting on
her heels by the doorway.
Uhhhnghh? Min-Ju responded wea-
rily from beneath the covers; hair over
her face, some in her mouth.
Get up. Have breakfast. Go for a run,
take your iPod with you. Go see a com-
edy film. Take a walk after. Rinse the
green beans, and well stir-fry them for
dinner.
Uhngh-huhngh, the creature beneath
the covers mumbled. Hyejin wondered
which task this was a response to.
Ill see you later. Get up.
Another murmur from her sister and
Hyejin, shaking her head, left the con-
do. Min-Ju heard the door close and the
lock turn. She was alone.
Hyejins urgings were her personalized
version of the same thing Dr. Chung
recommended to Min-Ju create: struc-
ture. She thought about trying Hyejins
proposed version, but she couldnt bear
the manufactured artifice of it. Didnt
Dr. Chung, MDand especially Fel-
low of the Royal College of Physicians
(Canada)ever hear of the saying: all
structures are unstable?
The other option, though, was the
abyss. There was still yet that other op-
tion too, unspeakable yet ever frequent
in her mind, but Min-Ju didnt think
she could go through with that either. It
would be like killing her Appa too, who
wanted nothing more than to garden,
see his daughters and read. A curious
sight Mr. Kim was now; sitting cross-
legged and bespectacled in the library,
with his dense beard and Blue Jays
cap; a man in quiet forgiveness and ac-
ceptance that his younger years could
have been more wisely spent learning.
How is your writing coming, my jagi-
ya? he would ask Min-Ju, as if it were
something inevitable and supposed
to happena matter of fact as sure
as springtime. Min-Ju knew this was
formed from a belief in and a love for
her that she couldnt fathom and even
if she tried to, she could picture herself
collapsing from within. She too, was
after all a structure, able to be brought
down by invisible, silent forces.
It was only when Min-Ju felt like her
body was feeding on itself that she got
up from the sofa. She went over to the
glass doors that led to the balcony, part-
ed the blinds and peered outside, a re-
cent, solitary tendency she didnt quite
know the reason for. What she knew
now, though, was that her childhood
suburbia was a prison, this prostitute of
a city was all about the money, and it
teemed with creatures of alien races
males and females of each finding each
other and perpetuating the precepts of
their species, pushing strollers, walking
the malls, opening businesses, and clus-
tering in communities. Each not seem-
ing to have much to do with groups that
werent theirs, and each not seeming
to care. Upset at this separation and
wondering if she was the only one af-
fected, Min-Ju would write furious
commentary and search for prospective
publications to send them to, believing
that people needed to know. Skilled im-
migrants are chosen as permanent resi-
dents based on their ability to settle in
Canada and take part in our economy,
the governments website said. Money.
These were the thoughts Min-Ju was
scowling about at the computer screen
when she heard the door lock turn and
the door creak open. A light switch
was flicked on and a swash of light
flowed into the living room where she
sat. You remember Min-Ju, right?
she heard Hyejin say in Korean. Min-
Ju looked up and toward the doorway,
with the bewildered face of someone
suddenly summoned, but who wasnt
expecting to be at all.
A girl, a teenager of about sixteen,
was standing near Hyejin as they both
pushed off their shoes. Min-Ju squinted,
trying to figure out who this was. The
girl was the effortless, and thus envy-
inducing, slimness of youth, pretty
with porcelain-smooth skin and soft,
acquiescent hair tied back in a sensible
ponytail. Ye, the girl said, smiling Ontario Museum, they walked down
enthusiastically, causing the word radi-
ant to form in Min-Jus mind. Min-Ju,
suddenly aware that her own hair was
a wild, tangled mess and that she was
wearing sweats and sweat, decided that
she would shake the hand of this girl,
who evidently knew of her, instead of
approaching her to offer a smelly hug.
She rose, walked toward Hyejin and the
girl and offered her hand.
Hello, she said. guide standing by, presenting herself
Anyoung hashimnikka, the girl said,
bowing as she took Min-Jus hand.
For a moment Min-Ju was startled. Oh
right; she remembered: respect. Can-
adas nice policy of multiculturalism
talked about respecting each others
differences. What the hell was respect
anyway?
And now Min-Ju had a new responsi-
bility: show Song-Yi, the sisters new
guest and second cousin visiting from
Seoul, around the city. Song-Yi would
be staying three weeks. As they sat
around the small table near the sofa,
eating the pineapple pizza Song-Yi
had eagerly requested on the way from
the airport, Min-Ju discovered that she
would have to show Song-Yi the city,
and not so much her city.
And so a gloomy Min-Ju and an excit-
ed Song-Yi zoomed up the CN Tower,
then dipped flatbread at an Ethiopian
restaurant. They sailed to the Toronto
Islands, then ate noodles at The Thai
Express. After wandering through the
sprawling gothicism of the University
of Toronto and then the quirky Royal
Bloor to the Fresh Vegetarian Restau-
rant. They had biryani at a Pakistani
joint before trekking near the sand-
stone cliffs at Bluffers Park. And all
the while, as a spirited Song-Yi oohed
in wonderment, her camera flashing
at architecture, markets, natural earth
formations and colorful cultural festi-
valseven while jamming with sub-
way musicians. Min-Jus mind was in
tumult. Outwardly she was the patient
and the citys attractions dutifully to
Song-Yi, but capital-P Present she
wasnt.
On the second night of the second week
of Song-Yis stay, Min-Ju couldnt
bring herself to finish the warm, tzatzi-
ki-dipped pitas that she and her cousin
had taken out. She was disgusted with
herself, even as she had taken the first
two bites and tried to maintain some
semblance of presence with Song-
Yi. It was the incident at the bus stop
earlier. To ESL-hampered Song-Yi, it
initially looked like a man quarrelling
with a woman, the latter taking it with a
sheepish what-am-I-going-to-do-with-
him smile, but the mans words had
been so ugly and abusive that Min-Ju
herself felt wounded. Song-Yi had
edged closer to Min-Ju, locking her
63
arm in her cousins, as thoughts of tell-
ing the man off clenched in Min-Jus
mind; but just as suddenlyalmost si-
multaneouslya mental scenario of the
mans violent reaction flashed, causing
her to freeze. His shaven, tattooed head
and bulging forearm veins didnt help
either. A streetcar then pulled up with a
melodic, oblivious chime, and the man
and woman entered it. It wasnt the
car the cousins were waiting for, but
they may as well have entered it too,
because the whole scene stayed with
Min-Ju for the rest of the day; upset-
ting her even more because she realized
how pathetic shed become. And now,
back at the condo, comforting carbohy-
drates were an indulgence with which
she couldnt let herself continue. Put-
ting the pita down and leaving Song-Yi
dozing on the sofa, she went up to her
room, opened a drawer and pulled out a
stack of paper: the discontinued novel
Appa always asked her about. In frus-
tration, on the blank side of one page,
Min-Ju wrote:
You did not say anything to that man,
Min-Ju. You should have.
Things were easier written than done
for Min-Ju. During the euphoric World
Cup fervor in the city streets, Song-Yi
asked to take in a match among its fans
to experience the festivity. Infestivity,
more like, Min-Ju thought. Still, she
took her cousin to a pub where Portugal
versus Italy was airing. Min-Ju cared
little for the whole tournament. It was
a gross manifestation of the diversity
problem, which was again evident
when their waitressafter some idle
chattingwent on a pro-Italy hurrah-
ing, which inevitably meant Portuguese
bashing. The arrogant raving and the
cackling scorn in her voice were so
pronounced that Song-Yi sensed it too.
Min-Ju wanted to ask why are you even
living in this city then, but the woman
was so raucous in her convictions that
64
Min-Ju again pictured verbal aggres-
sion, even slappinga scene in her
mind so detailed and intense that she
believed it would really happen, should
she say anything. And so she did not.
Later:
You could have called out the waitress
on her tirade. It was ugly, nasty, and
you left her in ignorance. This is what
fear does, Min-Ju.
At the end of each day out in the city
with Song-Yi, Min-Ju continued to
write to herself things she knew she
could have done or said in response to
the injustices of the day. It is the little
things that kill, and this was self sur-
vival now. Either she would act with
courage when courage was called for,
or continue on in a fearful state, rotting
away. She couldnt let herself live with
the realization that silence in injustice
is the same as siding with it.
* * * plant and animal wildlife in the coun-
At the airport on the day of Song-Yis
departure, Min-Ju felt like crying as
her cousin dissolved through the doors
to the departure gates, waving back at
the sisters. Their cousin had embodied
a free, exuberant spirit and a genuine
liking of Min-Jus company, unwaver-
ing even when Min-Ju thought her own
depression was obvious and affecting.
Some days later, as the sisters were
having dinner, Min-Ju commented that
Song-Yi was one of her favorite people.
Hyejin, chewing kimchi and rice,
smiled to herself; happy her sister now
had favorite peopleand that she was
now venturing out of the condo.
* * * Finch subway station, Min-Ju had
Min-Ju increasingly began to realize
that the difference between depression
and forward-movement was a choice.
And the gray area in betweenvery
easy to settle intowas in itself
still depression. But as she stood in
a crowded streetcar one evening,
bleary-eyed and holding onto a pole,
Min-Ju neglected to make the posi-
tive choice. What a sad state this place
was; this city. A man coughed absently
into a handkerchief. Another person
absently rustled a newspaper. Min-Ju
then thought that if anyone had been
observing her, they would gauge her as
a sorry, sad, lonesome woman. They
might even inwardly object to her be-
ing on the streetcar, cuz you cant trust
those melancholy mental types. At least
my hairs alright, she thought. Out of
an obligation to appear somewhat tran-
sit-normal, she raised the folded news-
paper she was holding and looked at
what was on it. A few paragraphs into a
piece, she was struck with a realization:
not only was she reading, but she was
also understandingeven experiencing
mentally what was on the page. It was
pointedly noticeable to her, because
focusing while reading was something
she struggled to do while in the throes
of despondency. The piece was about a
man encountering and communing with
tryside; a personal essay by a former
urbanite who had moved to be near his
parents.
Later, at night:
Min-Ju, look, humanity supports you.
This adds quality to your composure
and actions and it will heal you.
Live as if humanity is watching, Min-
Ju. It will lift you up (because you are
very much identified with pain and de-
spair). It will help you recognize beauty
as well; e.g., the musicians today.
That same evening, having departed the
streetcar and making her way through
heard the sound of two musicians; a
cellist and a violinist playing together.
The music was the raw, aching beauty
of humanity itself, rousing and moving
inside her something strong and pure, a
longing for everyone to live according
to such a sound. An abrupt, heightened
awareness of this humanity now bus-
tling before and around her, cracked
her senses open; she had become an
amazed, speechless witness to the mov-
ing flesh and limbs and vibrant earthi-
ness of these limber and fragile forms,
the pristine, shining now. Min-Ju
paused for a moment. She straightened
up and approached the musicians, plac-
ing change inside the cellos opened
case and smiled at the two men. Thank
you, she said to both of them, before
slowly walking away. Hell may be oth-
er people, she thought, but so is hope.
* * * friendships with seniors and schoolchil-
With the tunneling urgency that drove
her to put pen to paper, Min-Ju con-
tinued writing herself into a moving,
functioning life; intelligent design and
evolution now intertwined. Though she
now arose early, the personalities of the
employment days had become unfamil-
iar to her: Sundays loveliness, the con-
crete Mondays, the quietly despairing
Tuesdays and Wednesdays, Thursdays
hindering irrelevance, Fridays cheerful
triumph, the unshackled Saturdays. Ac-
cording to what she wrote, learned in
settings both social and solitary, Min-Ju
started to do. Washed in suffering and
now scrubbed fresh by her own words,
every movement in each moment felt
intimate and new, a discovery in the
doing. Presence, she later read, is what
meditatives would have called it. After
two years of existing in slumped mode,
Min-Ju straightened her posture. She
helped laden commuters carry their
grocery bags and smiled happily with
the drivers of streetcars and buses,
chatting often. More than one driver
declined to take her fare. She formed
dren at the community gym and helped
students with homework at the library.
She ate consciously; savoring fruit in
a pure, essential way that she hadnt
before, and she groomed herself with-
out indecisive pretension. And so, she
carried on. In the trains, Min-Ju found
that looking away from the young men
whose eyes she met, hurt her more than
it probably did themit hurt humanity.
So one morning, on her way to a job in-
terview, Min-Ju smiled, then winked at
one young man, who broke out in a shy
grin before quickly looking down at the
floor. He looked up at her again, and
smiling still, he winked both his eyes at
her at the same time, as a playful adult
would to an infant. The subway car was
almost full, but it was just the two of
them Present. Whatever ill a boy did to
a girl, and a girl did to a boy, it was all
forgiven.
* * *
At the interview in the ESL center, the
schools principal held Min-Jus ap-
plication up, peering down at it through
thick-rimmed glasses. There is a two-
year gap on your resum, she pointed
out, looking up at Min-Ju, waiting.
Min-Ju drew a breath in. That, she
said carefully, before a wide grin
broke out across her facethat was
when I did the greatest work of my
life.t
A longer version of this story was
published in the Nashwaak Review.
65
PERSONAL ESSAY
Cleaning
Lois Soffer
M
y son Parker will have a job at the airport next
year. Parker loves the airport almost as much as
he loves going to the carousel and to the zoo. He
could watch the planes move up and down the runway all
day long. He knows all the airlines by their logos and loud-
ly identifies the planes as they come in for a landing.
The job begins in August. A bus will pick Parker up and
drop him home every day, which he is thrilled about. Parker
will wear a badge around his neck and tells everyone about
it. He also shares that he will clean airport windows and
mop the floors. Hell make coffee and wipe down tables in
one of the airports restaurants. When he told his brother,
Perry, about his job duties, he proudly announced, Curity.
Perry looked at me, puzzled, and I told him Parker will be
working in security. Hell collect the bins that hold the trav-
elers belongings after they go through the X-ray machines.
Then, he will stack the empty bins and return them to the
beginning of the line. Parker will also get to vacuum, which
just happens to be one of his favorite things to do.
My son is about to graduate from high school. He has been
educated in the top rated public school in Missouri, where
he will graduate with a 3.7 grade point average. The fact
that the required studies have been modified, since kin-
dergarten, to reflect Parkers abilities and needs doesnt
diminish our pride in his accomplishments. There will be an
asterisk by Parkers name on the graduation program, indi-
cating that he is an honor student. I double-checked with the
principal, just to be sure.
66
Earlier this year, my husband, Andy, and I looked into a
program for students with special needs, at a local college.
Students are taught according to their own personal goals,
which we loved. And even more important, they are in-
cluded in university life. With the right support, we thought
maybe Parker could make it. He has always loved school,
and we wanted him to have every advantage before facing
the work world. But Parker isnt ready to leave homenot
nearlyand the college program requires students to live
independently. For now, anyway, this would be out of the
question.
When Parker entered kindergarten, we were asked to fill
out a survey about him. There were questions about his
history and his needs. About his strengths and our hopes
for him. The survey was in preparation for a community
meeting with important adults in Parkers life. We invited
my sister, my father, and some dear friends who love and
know him well. We asked Parkers preschool teachers to
come and contribute, and his babysitter, too. When Andy
and I arrived, we were stunned by the size of the group. The
circle of chairs covered most of the space in the double-
sized classroom. The principal was in the circle, along with
Parkers future teachers. Both Parkers physical and speech
therapists had come. The school cook and the janitor were
also there. We told the janitor Parker would be more than
happy to help him vacuum the school. Everybody laughed
and we relaxed, a bit.
We had been nervous about the meeting and anxious about
our choice to send Parker to public school. When Parker
was born, in the mid 1990s, attitudes about including stu-
dents with special needs were just beginning to change. But
Andy and I believed fervently our son should be fully in-
cluded in the classroom and, indeed, in society. The purpose
of the meeting was to allow Andy and me to introduce
Parker, to share the dreams we had for him, and also, our
fears. We told the group it was important for Parker to feel
safe and successful at school. We wanted him to find a way
to communicate. At the time, he was able to speak only a
few words, in spite of his clear desire to express himself.
We said we wanted our son to be accepted and loved by
the children and teachers. And that, eventually, we wanted
Parker to be out in the community, working, like everybody
else.
As Parker approached the end of high school, we were of-
fered the option for him to stay in the school districtthe
special school districtuntil he turned twenty-one. He house never looks very clean. Parkers handprints are all
would work, they said, and take classes in daily living
skills. After twenty-one, the guidance and support Parker
has gotten throughout his life, will disappear. We will most
likely be on our own to find him a job and everything else
he needs. Activities, a social life, somewhere safe and sup-
portive to live. Since Parker was young, wed heard terrible
stories about adults with special needs sitting home all day,
unemployed and alone, playing video games or watching
TV. We said yes to the program and to the airport job.
For the past couple years, Parker has worked in a super-
market every morning, as part of his education plan. A full
day of academics was proving difficult for him. There just
werent enough high school classes appropriate for Parkers
level of understanding. The proposal was for him to work
half a day and go to school the other half. Initially, we re-
sisted the idea. We wanted Parker to be in school full time,
like all the other students. But the idea of splitting up the
day sounded reasonable. He would learn skills required
to be a good employee. Hed have practice working with
strangers in a professional and appropriate way. And the job
tasks, themselves, were designed to help him learn organi-
zational skills, use money, and work more independently.
We knew Parkers favorite responsibilities would involve
interacting with the customers and his supervisors. So we
decided to go along with the plan. But soon it became clear
that Parker was spending a lot of his time cleaning the su-
permarket. He was cleaning shelves, sweeping floors, wip-
ing down counters. Things he already did well.
Parker loves to clean. He always has. When he was a tod-
dler, we discovered Parker especially loved vacuum clean-
ers. He loved to vacuum and he loved to watch people
vacuum. He loved the sound of it. The feel of it. There was
clearly some neurological something that was calmed as he
worked. When he vacuumed, Parkers whole body was en-
gaged. His long, skinny leg would bend deeply at the knee,
as his equally skinny arm pushed the vacuum back and
forth with all his might.
He cleans at home all the time. When our housekeeper
comes, Parker rushes downstairs to put all the cleaning sup-
plies in a bucket and bring them to her. He usually insists
on doing all the vacuuming. He loves to spray the Windex
and wipe the windows. The housekeeper is gentle and ac-
cepting of Parker, and lets him be in charge. Of course, our
over the windows, his smudges cover the doors and cabi-
nets. Our home has been messy and chaotic since he was
a toddler. We have learned to let go of some things, and a
perfect house is just another one of those things.
When Parkers fifth birthday was approaching, we asked
what he wanted for his birthday. Ah-doom, he answered
immediately. You want a vacuum cleaner? we asked, as-
tonished. Eth, he whispered emphatically. I decided Park-
er should have his vacuum. It was the one thing he wanted,
I told Andy, and what a great gift it could be for Parkers
grandfather to give him. It would be an honor, I saidlay-
ing it on a little thickto make his Parkers wish come
true. But it was something else, as well. It was a challenge
to Andys father and a challenge to ourselves. A challenge
to let go of our preconceived notions. A challenge to listen
to and accept and love our son, just the way he was. And
Parker wanted a vacuum cleaner.
All of us have to let go of goals and wishes throughout
our lives. As our children grow, we let go of some of our
dreams for them. Indeed, we are continually letting go of
our children. We are forced to let go of loved ones and of
our health. Somehow, we manage to live with the knowl-
edge that we will ultimately let go of life, itself. Some of us
do it gracefully. Others never stop fighting it.
67
The letting go is something Andy and I have gotten pretty
good at. It started when we came to terms with the fact
that, if we wanted children, we would need to adopt them.
Then, when Parker was four months old, we learned he had
significant disabilities. The adoption agency responded by
telling us we could return him. Return him. Even facing
devastating hurdles, we knew we had to say no. We felt we
had made a commitment to love and care for Parker the day
we took him home, and we couldnt break that commit-
ment. We wouldnt have been able to face telling Perry. We
wouldnt have been able to live with ourselves.
Letting go looks different when there are children with
special needs involved. We declined invitations to friends
houses, to parties, to restaurants for the first decade of Park-
ers life. His screaming was too unpleasant. He constantly
ran away from us in public, towards ceiling fans and garage
doors, items with which he was obsessed. It seemed our
family was always making some sort of scene. Andy and I
were exhausted all the time. It was simply easier to just say
no.
Though he had always been fully included, things changed
when Parker entered high school. As his classmates ex-
celled, he struggled and, regular classes were deemed
inappropriate for him. Parker started to spend most of his
days in the company of students with different types of is-
sues. At our urging, the administration let Parker take a few
courses with his typically-developing classmates. He stud-
ied cooking and theatre. He was in the choir. These things
pleased us and delighted our son. But, by his senior year,
most of Parkers days were spent with just one other girl.
She had significant challenges, as well. Parker loved her.
But it wasnt what we wanted for our child.
Wanting desperately for Parker to be included in the social
aspects of school, Andy and I took him to a high-school
dance, once. I struggled with what to wear and settled on a
skirt and heels. That was silly. Nobody there would be look-
ing at me, much less care how I dressed. Parker was shy
when we arrived and had to be coaxed into the gym. But
once he was comfortable, he started to enjoy himself. Then
Parker told us he wanted to dance. To dance with me. I
dont know why I hadnt anticipated this. He took my hand
and I swallowed hard as we stepped onto the dance floor.
I forced myself to focus on Parker and pretended I wasnt
decades older than every other person in the room. And we
danced. After a while, a sweet and pretty girl with long,
blond hair and a bright smile asked Parker to dance. I could
have kissed her. Parker wanted me to stay on the floor with
him, so we had a dance threesome. Parker had a blast.
68
But he was never invited on a play date. There were no
birthday parties after elementary school, not for him. In
middle school, Parker went to some bar and bat mitzvah
parties. The temple had mandated all the students be in-
cluded and Parker couldnt wait to go. Putting aside my
pride, I would call the mothers and asked if they minded if
I came to the party, in case Parker needed my help. Most of
them were gracious. Parker was thrilled. But since then, and
throughout high school, there hasnt been a single invita-
tion. Not to a party, or movie, or school play. Not to a foot-
ball game, and certainly, not on a date.
Perhaps Parker will have a social life at the airport. Hell
be working with seven other young adults with disabilities,
so who knows? Sometimes, I fantasize that one day Parker
will have a girlfriend. Or a date. Or that maybe, one day, the
phone will ring. Ill answer and try to act natural, as I yell,
Parker, pick up the phone! Its for you!
People often ask how Andy and I have managed so well,
and I never know what to say. Im not really sure why
weve remained strong when so many parents of children
with significant issues come apart. When my boys were
young, I decided to stop working, so I could be more avail-
able to my family. It was a sacrifice and a loss that prob-
ably saved us. Or maybe its that for most of Parkers life,
we sought support and advice everywhere we could. Andy
and I had a sitter come when the boys were young, so we
could get out of the house once or twice a week. We held a
weekly business meeting at the kitchen table, so we could
get routine details out of the way and make space for each
other. And there were years of therapy. Perhaps its the
combination of all these strategies. I dont know.
Maybe its come down, simply, to a gradual acceptance
of our circumstances. We slowly let go of our vision of an
ideal family. Andy and I no longer focus on the old dreams.
Instead, we have watched our son become his own, amaz-
ing self. Sweet and funny, with an uncanny memory and an
unparalleled love for people. Parker is the happiest person I
have ever loved. He is the happiest person Ive ever known.
These days, we do a lot with an organization devoted to
people with special needs. Andy serves on their board.
Were always going to their fundraisers. Parker plays
basketball on their teams and attends their summer work
programs. He loves the staff and his teammates. Of course,
this is not what we wanted, either. Its been another sort of
letting go. But Parker is having a great time at spring break
camp, where the theme is Hollywood. On the first day, ev-
erybody entered on a red vinyl carpet. The paparazzithe
counselorssnapped Parkers picture as he walked by.
 POETRY

When I yelled good-bye, he didnt bother to look back at

me.

Ive been thinking a lot about Parkers graduation party,

which will be huge. Friends and family are coming in town
to celebrate. People who have helped care for him will be
there. There wont be any other high-school students, but
there will be aunts, uncles, and cousins. Three grandparents
will fly in. All people who have let go, a little, of their own
dreams, to make space in their livesin their heartsfor
this wonderful, complicated young man. Michael Mark
But mainly, Im picturing the graduation, itself. And worry-
ing. Will Parker be willing to walk down the aisle? To wear
a gown? We wont know till that night. There is no way in The Good of a Thing
the world theyll get a cap on him. And I already warned
his teacher that Parker might refuse to take his diploma. They pull to a stop and contemplate
She said shell make sure theres an assistant, if he needs the long stem.
one, and they will practice a lot. Well see. I do know one
thing, for sure. The place will go wild when Parkers name An orchid, she forces from her mouths
is called. Every time I have visited the high school, Ive side. Was.
been stunned by all the people who call out to him, who
are delighted to see him as he struts down the halls, waving A stroke put her in the wheelchair.
happily. He may not have been invited to parties, but my Diabetes took his legs.
son has changed his school and his entire school district.
The principals of every school Parker attended thanked us Someone should dump it, he says. What
for entrusting them with our son, for he has changed their good is the thing without a flower?
communities.
When the speakers announce dinner,
Parker will do well at the airport. He will wait happily at the they roll off to their rooms.
door, every morning, for his bus to arrive. Hell have a lot
to say about the planes speeding down the runway and his Later, the cleaning woman will throw
teachers will need to remind him to talk quietly. Parker will the plant away or ignore it or
work hard and learn more than they expect. And in turn, we
will expect more of them. Once he is settled at his new job, take it home in a plastic bag to nurse
well encourage the teachers to lighten Parkers cleaning back to health, leaving
responsibilities, to give him more challenging work. And if
all goes well, they will listen, and he will change their com- the vase dusted clean
munity, too.t enough to see ones reflection.

Previously published in Camel Saloon (now defunct).

Reprinted by permission of the author.

69
PERSONAL ESSAY
Jays Pawfect Pal
J
onathan is different, the
principal told us. Its very
subtle, but he is not like other
six year olds . . . that disarming smile
and friendly attitude is appealing, but
theres something that sets him apart.
Jay is a free spirit and may need special
training.
Jonathan Jay was born with muscu-
lar dystrophy which would place him
in a wheelchair before he reached his
eleventh birthday. During most of his
school days he remained isolated from
the mainstream in an imperfect setting,
often suffering the bitter sting of rejec-
tion.
On that summer day, when he was
fourteen, we took him to the New York
State Olympics for the Physically Chal-
lenged. Jay was drawn to a demonstra-
tion by the Canine Companions for
Independence at the edge of the field.
There he saw a beautiful girl working
a yellow dog from her wheelchair. Jay
instantly fell in lovewith the dog.
The girl put her dog through his paces.
She issued commands. He instantly
obeyed. He picked up an object she
dropped and gently placed it in her
70
June Capossela Kempf
hand. He pulled her wheelchair around
like a Husky hauling a sled team. But
the dogs most impressive perfor-
mance was to purchase a poster from
a nearby vender with money he held
in his mouth. The transaction was a bit
drooly, but efficient. After each task
was completed the girl lavishly poured
on praise, Good Dog!
Then the dog rested his sweet warm
head on her lap, breaking into a broad
trusting doggie smile. Such a display of
unconditional love sold Jay. I need a
dog just like that one . . . .
Canine Companions for Independence
(CCI), dedicated to providing assis-
tance dogs to those who are physically
and emotionally disabled, had its roots
planted in Santa Rosa, California by
Bonita Bonnie Bergen in 1975.
Quickly, the organization spread to five
regional centers throughout the U.S.
Fortunately for us, the Northeast cen-
ter was located right on the campus of
Farmingdale University in Long Island,
NYless than twenty minutes from
our doorstep.
Our application was answered with a
warning: The training program for dog
and master was TOUGHso harsh
it had been dubbed: Boot Camp. As
we sorted through the packet of instruc-
tions, we learned that Jay was expected
to pass an interview, a psychological
evaluation, and a home inspection. He
needed letters of recommendation and
medical necessity. This was going to
be a long drawn out process, but that
failed to deter Jay. He immediately got
to work filling out the attached ques-
tionnaire.
Mom, they want to know what I do
when I get angry, he said.
Just put down the truth.
He sat at his desk, disgusted and ex-
haustedtrying to decide on an an-
swer. Finally a sinister smile erased his
usual angelic expression as he queried:
How does kick the dog sound?
Like you dont want the dog.
Well I am pretty mad now . . . Id kick
somethingif I could.
Two hours later he emerged with the
questionnaire in hand.
Here, its done.
Howd ja answer THAT question? I
said.
Well I didnt say Id kick the dog.
Jay handed me his script: It varies.
Sometimes, when I get angry I curse.
Mostly I go to my room and blast my
music. Sometimes I cant do anything
but crythats when I could use a good
dog the most.
In a week we had collected all the
medical certification and references
needed to qualify. We sent the applica-
tion to CCI and waited an eternity until
a dog and a training slot could be found
for Jay.
Anything worthwhile is worth waiting
for, Jay. It cant be easy to find the right
dog for anyone.
Finally, we were summoned for the first
training class.
As you may notice, Barney is a little
. . . different, his trainer, Ellen Torop,
explained. But hes a good dog. Look
at that smile . . . . He got through his
training classes with flying colors. Hed
make a great companion for the right
person . . . . Ellen seemed to hold a
special spot in her heart for Barney.
This is the third class Barney has
come through without bonding with
anyone. As you can see Barney is not
perfect; he has no pedigree. He has a lot
of Lab features, but if you look closely
. . . see the bushy tail and . . . these
ears? she asked. She gently tugged at
the one pointed ear that contrasted with
the other folded over Labradortype
ear. We think hes a little Border collie
mix which makes him a very good dog
for the job. He has a quirky personal-
itya will of his own. Sometimes he
follows orders on his terms.
She gave a fascinating history of the
dog: Barney wandered into a New
Jersey shelter around Christmastime.
Someone at that shelter recalled that
CCI was considering using mixed
breeds in the program; so they called
the Farmingdale Center. On a cold
Christmas Eve, Ellen and her team
made a run to the shelter, examined
Barney and took him back with them.
He was quickly placed with a puppy
trainer where he became acclimated
to family life. After a year the dog was
returned to the center where Ellen took
personal responsibility for this more
intense phase of the training. It was
important to her that Barney wound up
with the right candidate. She was frus-
trated that he couldnt find someone to
bond with in his first two attempts and
now she feared he would be rejected
from the program.
Jay was first to recognize the similari-
ties he shared with Barney. The person-
ality traits, the imperfections, the spe-
cial training, the rejectionand above
allthat free spirit. I want Barney,
he announced.
When Jay realized that the decision
was not his to make, he became si-
lentcontemplative. But he fell into
the routine and worked with three dogs:
Madison, Sandy, and Barney. They all
seemed to match Jays temperament,
but Barney was Jays favorite. When
a survey was distributed among the
participants asking for first, second,
and third choices, Jay put Barneys
name down in all three slots. I guess
the message was received and Barney
was selected to go home with us for a
trial run.
This is no guarantee that youll get
Barney. I told Jay. However, he was
convinced that Barney was his special
guardian angel.
At home, Jay was to establish a bond
with Barney. No one in the family was
to make eye contact with the dogs big
warm and trusting eyes. Since we had
to care for Jays personal needs with the
dog by his side, we managed that with
some difficulty. On the seventh day, Jay
made a startling announcement:
I cant go through with it . . . . Its too
hard.
Getting up at 5:00 a.m., struggling to
get ready and on the road by seven, fol-
lowed by a grueling training day was
taking its toll.
What about Barney? I thought you
loved him.
I dobut I just dont think I can make
it anymore. Maybe Barneys not meant
for me.
It wasnt like Jay to give up. Maybe if
he got a good nights sleep, hed feel
differently the next morning.
If Barney is really your special angel,
youll get himno matter what! I
said.
71
At 5:00 a.m., the wall shook as Jay
pounded his head against itsum-
moning us to get him up. This time the
Boom, Boom, Boom reverberating
through the house, was accompanied by
a loud Woof!
Lets go! Jay ordered.
On the ninth day, thinking we were
pretty hotshot doggie handlers, Jay de-
cided to bend the rules a bit for our last
assignment of the coursea restau-
rant trialbut not at McDonalds as
suggested. He chose to go to the 59th
Fighter Group hangout at the airport.
We approached the door with two other
patrons. We talked to them briefly ex-
plaining our outing and both gentlemen
laughed. A garden hose was draped
across our path so they chivalrously
jumped ahead, lifted the hose, forming
an honor guard for us to pass beneath.
This time I looked at their smiling faces
and realizedone belonged to Neil
Armstrong.
Youre . . .
Shhh! he signaled.
We complied and then were seated a
few tables away from the publicity-shy
astronaut. We dined heartily while Bar-
ney, unassumingly, took his place under
our table.
* * * if Jay was pursuing a teaching career.
Upon the completion of training, Ellen
presented Barney to Jay at the most
touching graduation ceremony I ever
attended. Everything seemed to be go-
ing smoothly so I wondered why Jay
appeared uncharacteristically nervous.
I cheated. Do you think theyll take
Barney back?
You cheated! How?
When I was working the dogs, I kinda
72
gave the wrong commands to Sandy
and Madison . . . then I gave the right
ones to Barney.
Jay and Barney became an inseparable
team. Together they forged friendships,
providing inspiration and motivation
wherever they traveled. Most impor-
tantly Barney gave Jay a new focus and
self-confidence he never had known
before. In an interview, Jay said, Until
now people concerned themselves with
trying to motivate ME to do things.
Now, Im responsible for motivating nally my friend, Kate Horn, offered to
Barney.
For three years the dynamic duo
worked CCI demonstrations. Little by
little the once shy and introverted Jay
developed a charismatic and outgoing
personalityproficiently presenting
Barney to groups and audiences all
over the county.
Before Barney came into his life, I was
in the habit of speaking for my son; but
now all that has changed. I was aston-
ished at a fourth grade assembly when
Jay took charge at the end of the demo,
fielding questions from students and
teachers with poise and humor. Is he
spayed? one kid asked. Before anyone
could muster a snicker, Jay coolly re-
plied, Yes. Barney had to be altered so
he wont be distracted from doing his
job. Next question? When the event
was done, the principal wanted to know
To my amazement, Jay answered affir-
matively. His life had taken a complete
turn for the better. Jay now had a pur-
pose and a new direction to follow.
While attending Dowling College in
Oakdale Long Island with Jay, Barney
distinguished himself as a goose chaser,
chic magnet and a bandit. Perhaps a
miscarriage of training that taught the
dog to handle money and to retrieve
caused some confusion when Barney
found money on the caf floor. Both
dog and master needed retraining after
Jay began letting Barney buy lunch.
* * *
A slight colda winter allergy
morphed to congestive heart failure
suddenly leaving Barney alone without
his master. Even as Jay languished in
the hospital for ten brutal days, Barney
was deep in the throes of grief. He
would lie by the door, curled up in his
blanket and look askance at us each
time we came home without Jay. Fi-
bring Barney to the hospital to see Jay.
Although unsaidwe all knew the visit
was meant to say Goodbye.
After concocting a scheme to smuggle
Barney into the hospital, with Kate
posing as a CCI trainer, we opted for
honesty and simply got permission for
a canine visit. The reunion of a dying
young man and his faithful dog was
treated with reverence by the staff that
left the two of them undisturbed for
three hours. Then it was over.
Barney walked the last mile by his
masters casket as it was brought before
the altar of God for a final blessing.
Recognizing a divinely created bond,
the priest made sure Barney was also
showered with the holy waterfor now
the dog would suffer a sad and pain-
ful bereavement. His grief and ours
was softened by the decision at CCI to
reassign Barney to us. For a while, we
remained connected to our son through
Barney. But soon the aging and griev-
ing dogs health failed too, and Barney
was once again reunited with his master
to explore every inch of heaven forev-
eras a team of very special angels.t
 POETRY

Ron Riekki

My Cousin, His Cerebral Palsy, His Tattoos

Winter, in the Upper Peninsula, can kill you.
It sets the homeless on fire and makes the poor
cuddle deep into each others arms until they are
nearly forgotten. There isnt much compassion
when youre made of ice. You tend to cover
yourself with skulls. Your actual skull on top,
hovering above it all. I think of the demon
Chernabog in Fantasia, this thing so dark
and high above it all. And your shoes, the sides
all torn from walking with your knees collapsed
inwards, dragging through cities. You say no girl
ever touched your knee until your wife and now
you will clutch her to you tighter than the tats
that are branded, fragments, promised to your arms. Nancy Scott

The Sixth Child

She lived in a crib her first three years,
in a closet, often not fed.
Mom said she only had five.
When rescued, Annie could barely sit.

Today, with thin arms, she circles her food

and waits.
If she thinks youre not looking,
she squirrels away cheese, raisins, grapes

deep in her pockets, under the rug,

between the cushions.
You give Annie what she wants
and dont let on.

Previously published in the authors book, Running

Down Broken Cement, (Main Street Rag, 2014).
Reprinted by permission of the author.

73
PERSONAL ESSAY
Letting Go, with Love
Tammy Littlejohn
I
remember when my son Thomas, was a little boy and
I let him go to the skating rink by himself. I had never
let him do that before. I loved him so much, I wanted to
keep him safe. But his brother was sick. I had to stay home
to care for him. So I let Thomas go and have fun. Oh, it was
hard and I was worried. But there were other teachers and
parents watching the children. I gave him some money to
buy a hot dog in case he was hungry. This was no easy day
for me. I prayed he would be OK.
When I arrived to pick Thomas up, I observed him skating
around the rink by himself. Before that day, I had always
held his hand. He seemed happy, skating by himself. Then,
I noticed that he had stopped. His skate was untied. He had
never tied his skates by himself. In fact, he wore Velcro
shoes every day.
To my amazement, without anybodys help, he tied the
skate himself. When he looked up, he saw me and smiled a
very big smile. Mommy, I tied my skate myself. I smiled
back. I was proud and told him. Then he told me he was
hungry.
My child with a big heart had given his snack money to a
girl to feed her. I had to tell him that had been his choice
and I didnt have any more money to give him. But he was
still happy and so was I. After all, letting go just a bit al-
lowed my son to grow up a little, accomplish something
new, and feel proud of himself.
Since then, my son had a traumatic brain injury playing
football. He has had to relearn to walk and talk and do al-
most everything. It is hard to let go and let my son grow.
Thomas was sixteen when he had a head-on collision with
another football player. His head had a slow bleed inside.
Five days later he was in a coma. It was scary. I love my
child so much, and I was told he only had a ten percent
chance of living and if he did live, he would be a vegetable.
After being in a coma for five days. Thomas woke up.
He told me Mom, I was with God.
74
I told him I believed him. Id just been praying over him in
the ICU. But after that comment, he didnt make any sense
for months.
We sent him to the Madonna Brain Institute in Lincoln, Ne-
braska. My parents stayed in Lincoln with Thomas, while
my fourteen-year-old son and I visited on the weekends.
Thomas couldnt talk, he couldnt walk, he couldnt feed
himself or shower or do any of the things we take for grant-
ed. But his determination helped him recover. That was in
2006. Since then, he has done a lot of therapy. He finished
high school and earned his Eagle Scout badge. Thomas was
a speaker at the 100th Boy Scout Anniversary celebration at
the capitol building in Topeka, Kansas. He talks about the
power of prayer wherever he goes. Many people tell me,
because of him, they have asked Jesus into their hearts. I
know my son has a purpose. And I am proud of him. But we
are still working on some things.
We still have therapists. It has been a difficult road for
him and for our whole family. Thomas has had seizures
for years. He has chronic pain. My son would still give all
his money away. People have taken advantage of his good
heart. It hurts me to see this happen to him. So I am very
protective, but I realize, there must be a balance. My son
needs me sometimes, but he also needs to be independent.
Being a twenty-seven-year-old man means he wants to do
many things his own way. Having family around makes him
safe, but I have to let him grow.
I realize I am back at that point where I was when he was
little, and I had to let him do things on his own so he could
grow to be an independent young man. Believe me, it isnt
easy. I want to pave the way for him, protect him, and keep
him from all harm. He will always have the safety of our
home if needed. However, I do understand that Thomas
wants to experience life on his own. I guess my job is to
continue letting him go with love.t
 POETRY

Mary Doyle Johnston

The Space Between Us

I would talk to you
as before
In cool evenings
when the wind blew
Lacy gray clouds
across a navy blue sky
And the stars and moon
held distant audience
of us.

I would talk with you

as before
On so many dreary evenings
when a light mist covered
The crimson leaves
that carpeted the gray paths we trod
And the chattering chestnut-streaked squirrels
held noisy conversation
because of us.

I would walk with you

as before
Quietly at your side
when lonely bitterness
Drove black clouds
across your life
And empty dreams and visions
held mocking court
within you.

I would walk with you

but,

As before
I cannot reach you,
cannot touch you,
And mine is the greater sorrow.

75
POETRY

Mary Doyle Johnston

Transformations
I III
Soft green gives way to blued roughness,
Straight gold heat replaces diffuse yellow warmth,
Fluffy white turns to wisps of silvered hardness,
Flat sorrel covers irregular cream speckle.
Blue-green needles against a cobalt sky,
Bright hot rays reflected from ocher slabs,
Slivers of leaded white racing south;
Titian gilded walls above a broken floor of sienna,
Washed by creamed khaki ribbons flowing
Counter to the journey north.
Black-spotted white posts reach upward into gray-blue sky,
Needles for lace,
Jagged yards for rolling miles,
White and hunter for flax and olive,
Novel for familiar.
II
Bursts of crimson and gold amid greens, brown
Russet patches, and grayed slabs.
Cool gusts pluck at the colors,
Whisper threats and prophecy
Of the gray, black and white to come.
Frosted lemon slants through pale gray,
Pillowy off-white lint
Shrouds the serrated gray, black and white
Monuments of a flooded and
Violent past.
Titanium white, floating into place,
Sharp, interlocking edges rest on the ground.
Cinder-grayed slush mounds against white,
Pierced by blue-green pyramids.
Charcoal limbs against white,
Surrounded by straight, dark poles,
Skirted in shades of green,
Crimson drops decorate hunter green.
Encompassing, muffling, blanketing,
Demanding quiet, stillness,
Preserving
Time, energy, life.

Charcoal wisps rush across a leaden sky,

Yellow-brown husks scuttle across the lawn,
Settle against fences, in crevices,
Mat down with rain and new layers,
Mulch for dormant bulbs beneath.

Gathering, settling,
Drawing close a cloak of warmth,
Storing reserves
For sleep.

76
William H. McCann, Jr.

William H. McCann, Jr.

Failed, 1959
At three and four
I wore a football helmet, Letter: April 11, 1962
Drooled
Dear Mommie and Daddy,
such that my words could not be understood;
We got up early yesterday morning.
And walked by swinging my right foot in wide arcs
We boarded a big orange school bus and went to Chicago.
making for a most awkward gait.
Phenobarbital
We went to the Museum and I saw a lot of machines.
Helped control my seizures.
I saw how baby chicks come out of the egg.
Yet, falling was a daily,
We saw ducks, pigs and a farm.
even hourly, occurrence.
One of Dr. Frankensteins failed experiments.
We went into a coal mine to see how they get coal.
They showed us how it works for a fire.
We saw a lake, we saw clouds and heard it thunder,
Saw it lightning and rain.

All of us ate in the cafeteria.

William H. McCann, Jr. Mr. Bartlett asked me to help him.
I went and got napkins for the children like a big boy.

When I was Six, 1962

I had a good time.

I fell asleep on the bus on the way back to school.

Thrown out of every kindergarten
In Lexington, KY Love and kisses
For not being able to sit still Bill
And play nice with others
My parents took me to
Cove School in Wisconsin
And
left
me
There.

77
ARTICLE
Seeing and Hearing Differently
I
n the honors hallway at Randolph-
Macon College, a felt pair of the
little green aliens from Toy Story
adorns each door. Each alien sports a
students name across its chest. One of
these aliens has its ears ripped off, and
another alien is missing its eyes.
Freshmen Brennan Terhune-Cotter and
Derek Dittmar playfully removed the
alien body parts to create symbolic rep-
resentations of themselves. Brennan is
deaf, while Derek is blind.
Brennan was born deaf, and although
the disorder is genetic, hes the only
deaf person in his family. He can still
hear a little bit, but seldom uses hear-
ing aids. Having grown up around deaf
people, Brennan communicates mainly
through American Sign Language. Col-
lege is the first time hes been in a hear-
ing environment.
Derek has Lebers Congenital Amau-
rosis, a rare genetic condition in which
the center of the retina is damaged. He
and his twin brother are the only mem-
bers of their family with this disease.
No cure currently exists for the type
of LCA Derek and his brother have,
though Derek wears a pair of high-
prescription lenses.
78
Sarena Tien
Watching Derek and Brennan com-
municate with each other is an enlight-
ening experience: Derek knows sign
language, and Brennan will occasion-
ally repeat words out loud to let Derek
know hes following the conversation.
Neither student seems bothered by his
disability: in Estes, you can see Bren-
nan signing animatedly to his room-
mate and Derek carrying around a cane,
accompanied by friends who help him
get food.
In Dereks opinion, Randolph-Macon
does a great job of accommodating dis-
abilities. Unfortunately, the burden
of a fair and equal education [at most
schools] is often put upon the disabled
student, he explains. It is common for
schools to reply to questions with you
figure it out and let us know. R-MC,
luckily, is not one of these schools.
Dereks and Brennans college expe-
riences differ vastly from their high
school ones. Back in high school,
Derek had an Individualized Education
Plan, a legal document that explained
his diagnosis and required accom-
modations. Although the Americans
with Disabilities Act of 1990 states
that people with disabilities must be
given reasonable accommodations,
professors and students can interpret
reasonable very differently. A dis-
abled student could claim that he needs
the professors notes, but the profes-
sor might think the notes shouldnt be
shared because they can be found in the
textbook. Then the professor and stu-
dent engage in a battle of wills, which
tarnishes their relationship. Luckily,
says Derek, this has not happened at
R-MC. He adds that his R-MC pro-
fessors have been more accommodat-
ing than those he encountered in high
school. They ensure that assignments
are correctly prepared and that lectures
are given clearly with all informa-
tion presented verbally. I have never
learned as deeply or thoroughly as I
have at R-MC, Derek says.
Brennan attended a national deaf high
school in Washington, D.C. where all
classes were taught in sign language
and the 150 students could sign flu-
ently. Because students and professors
at R-MC speak verbally rather than
through sign language, Brennan uses
interpreters in class who convey the
material to him. In high school, he
adds, there were very few, if any,
linguistic or cultural barriers because
everyone was deaf.
R-MCs Office of Disability Support
Services works to ensure that, like
every other student on campus, Derek
and Brennan have an equal chance of
excelling. Both students agree that Dr.
Jack Trammell, whos in charge of the
colleges Disability Support Services,
is a tremendous help. Dr. Trammell is
phenomenal about advocacy and mak-
ing sure I get what I need, Derek says.
Derek uses a laptop and headphones
in class, tests in an alternate location,
and receives materials from professors
in accessible formatselectronic or
Braillein a timely manner. For Bren-
nan, the college provides interpreters in
classes and meetings.
Even when Derek and Brennan arent
in class, the college works just as hard
to ensure their safety and success.
Members of Residence Life warn
me of sidewalks under repair, hazards
in the road, and a host of other small
things, Derek explains. Once, a mem-
ber of Residence Life even met him
near a construction zone in order to
establish an alternate route. It is a new
situation for everyone, Derek says.
The college is not used to working
with visually impaired students, and I,
being a freshman, am not used to col-
lege. But having a team so willing to
learn, try new things, and ask questions
is such a blessing.
Brennan has an alarm that wakes him
up by shaking his bed and a doorbell
that substitutes for knocks at his dorm
room door. Otherwise, he favors self-
sufficiency. I prefer to manage every-
thing else on my own, he explains,
but if I ever need assistance, the col-
lege is always willing to help.
Regardless of societys stereotypes of
those who have disabilities, Brennan
agrees that being deaf has its benefits:
deaf people share a collective pride in
their culture and community. Theyve
developed their own culture, which has
a nationally connected community,
art, and media, along with their own
language. It becomes something to be
proud of, not to be ashamed of, Bren-
nan says. I think this level of closeness
and support felt among members of
the deaf community [is] unique to deaf
people, because of our unique status as
a linguistic minority.
Brennan stresses that being deaf has
helped him to grow as a person. Ive
had to work against the obstacles that
come with being a linguistic minor-
ity as well as the stereotypes of being
disabled, which is why I dont really
like to use that term to define myself,
he explains. The hardest part of being
deaf is far from the inability to hearit
is the inability to communicate fluently
with the outside world. However, you
learn and adapt so much from overcom-
ing those obstacles.
Derek shares a similar viewpoint on
blindness, saying that I would not be
the person I am today if I was fully
sighted. Society often places limits
on people who are blind, and Derek
provides a shocking example from his
hometown of Raleigh, North Carolina,
saying, Literally, the blind school is
right across the street from Raleigh
Prison, and Im not sure which one has
more security. But Derek believes that
We should not be confined by our lim-
its; we should be encouraged by them.
In a society that often judges people
on the basis of first impressions, Derek
tells himself that the worst-case scenar-
io is having people remember him for
his blindness. My job is to make them
remember me for me, he stresses.
Music provides Derek with an outreach
for accomplishing that goal. At sixteen,
he started playing an acoustic guitar
so he could write music and perform
solo. Theres a reason everything in
the world hasa rhythm: the heart, the
ocean, even the rain. Writing music and
performing is something that Im called
to do, Derek explains. I have a gift,
and I want to use it to make someone
elses life better. And that will make my
world better too. Its not hard to make
the world a better place. You make a
connection with someone who makes a
connection, and soon many people are
connected. Music is a real connecter.
Through his music, Derek wants to tell
people with disabilities that There is
hope. You dont have to stay where
society puts you. Everyone has a
voice, and Derek uses music as his. I
can sing about my struggles with a lost
friend, and my songs can help to heal
the wounds. But someone else can take
that same song to be about a love gone
sour, and that same song and those
same lyrics can mend those wounds.
Derek isnt the only one who views his
disability in a positive light. Bren-
nan adds, I think being deaf, to me, is
so much more than just the inability to
hearits the inclusion into a welcom-
ing and unique community and culture,
linked by a similar set of experiences.
Its a beautiful thing, really.
Society may consider Brennan and
Derek disabled, but theyre bright,
eloquent young men who refuse to be
constrained by social limits. I feel that
we are made up of everything we have
faced and the bad things that happen to
us help turn us into the man or woman
that we are today, Derek says. There
are definitely a lot of things Ill never
be able to do, but there are also oppor-
tunities because people are more will-
ing to let you try.t
79
POETRY

Blair G. Sweeney

Handmade Kites
Room 10 bursts with eight-year-olds
making a huge class map of the USA.
They bend and reach, scribble state names,
capitals, state birds.
Clear voices race in cadence,
the seasons of learning in full swing.

Heavy trudges and shrieks signal Room 9

across the hall. The door is closed.
Nine boys and one girl
each have a reason to land here
where a walker bumps the desk, wheels reverse
roll back to his seat on next try.

Today Room 9 makes kites.

Heads down at their desks
each child fastens batten by batten,
and wraps white cloth on a cross
as looped string tumbles to the floor.

They imagine soaring shapes

across a wide open dome.
They see themselves looking up at last,
happy in the sun, masters of their own ship
as the poplars bend east in the breeze.
Almost ready for launch, they raise a hand
for teacher to tie the final knot.

But she takes them outside on a windless day

so ten kids lurch across pavement
murmuring invocations of lift
dragging handmade kites behind them:
sailcloth diamonds scraping through mud
hoping for air.

Room 10s prize is a wide map on display

drawn by twenty-five kids.
Room 9s prize is a kite made by fists uncurled,
now ripped and shoved in a backpack.

But from the playground gravel and wind-piled sand,

from her braced feet and the wheels that steer his walker,
the uplift that will raise them
from the bottom rung is coming.
Elusive breeze, it whirls and circles
and when it finally bursts
it will crush the known horizon.

80
Mary Ellen Talley
Regarding the Previous Ease
of Doing Two Things at Once
Directions lie
somewhere in the student locker
where he left them
before the accident
when eating red and black licorice
had seemed
so damned simple.
Velocity of the brain
repairing itself
is related
to effort exerted walking
down the hall
and quantity of licorice
available for chewing.
This urgent dance rolls forward,
deceptively simple.
Spider veins branch hands
across knuckles clenching rubber grips
while the guy learns to use the walker,
hold licorice,
talk on lungs air,
take a bite, chew n walk
all at the same time.
John Smith
Scoliosis
for Tara
Some spines are stacked more like sticks
than bricks, some like dominoes. Some
backbones bend to and fro, butt to brain,
like spiraling staircases of tiddlywinks;
while others smile, keep a straight face,
or grimace. And then there are those,
bent like a river flows; and so, my love,
your curvature goes. But you should know
not a backbone among us stands perfectly
straight, and everybody wears a brace.
Some people are born into one, some
saddled along the way; others suit
themselves without even knowing it.
A brace can be a Band-Aid or a badge,
a straitjacket or a shield. Wear it
on the inside or the out, but wear it
you will. Strapped, snapped, or Velcroed,
sun up and down. It can be a shell,
my dear, thick or thin, or a cocoon.
Its up to you, my sweet embraceable you.
81
FICTION
Just One of the Moms
Marlaina Cockcroft
T
he cluster of moms stood at the edge of the play-
room, uniformed in hoodies and yoga pants. Kerry
eased in to join them, hoping they wouldnt notice
shed opted for jeans. Yoga pants, she felt, were for yoga.
She waited for a conversational opening, wondering why
it was considered more mom-like to quit caring about your
appearance. Their hair was ponytailed or scrunchied away
and they wore no makeup to soften their tired, sharp-eyed
faces. Kerry couldnt bear to leave the house without con-
cealer and lip gloss, and pulling her curly hair back would
wreck it. Will this hurt Jason too? she thought. That I dont
look like the other moms?
One of them, who she thought might be Brandens mom,
was complaining about the academics at their kids school.
Its just not at the level it should be. What are they doing, a
worksheet a day?
I know, agreed the woman next to her, possibly Kiaras
mom. Theyre not doing anything with math or geography.
I asked my daughter what state she lived in and she didnt
know. The other moms made horrified noises.
Jesus, theyre in kindergarten, Kerry thought but didnt say,
because she was the newcomer. No one here knew Jason
had been asked to leave his preschool. She was trying to
connect with the other moms, because he needed friends.
82
Theyre not doing nearly enough with handwriting, said
Cartons mom. Kerry had texted her once or twice about
play dates and had never heard back, even though, at a pre-
vious birthday party, Cartons mom had said, We should
get together, heres my cell. Why would someone say that
if they didnt mean it?
I know! said Brandens mom. His t is OK but his s . . .
all over the place. I told him, no more iPad games until his
s is right. The other moms found that funny. Kerry sup-
pressed a sigh; they didnt even own an iPad.
Their money was going toward the behavioral therapist and
the weighted vest and the pricey omega-3 supplements that
her husband called snake oil, but that she bought anyway,
just in case it worked.
She glanced over at the rainbow-colored play area, where
the party guests were shouting and tumbling their way
through the padded tunnels and into the ball pit. She could
spot her son by his red long-sleeved tee. He seemed all
right, following the herd of children, mouth stretched in a
grin. Still, at any moment he could push too hard, cut in
line, grab someones toy, not understanding personal space
or no pushing or dont take things. He was five, going on
three, as the therapist described him. He didnt understand it
was wrong, or else he couldnt stop himself.
He also didnt understand about running in parking lots.
Kerry knew the only way to keep him safe was to clutch his
arm whenever they were in an open space, until he whined
about Mommy hurting him. Shed watched enviously as the
other moms and kids headed across the lot to the play center
for the party, everyone walking nicely, no running. What
was that like?
The other moms were laughing about something Kiara had
said at school. Kerry pretended to laugh along, though she
hadnt heard it. She said, What is everyone doing about
lunches? Its so hard to figure out whats safe.
Oh, I know, said Cartons mom, smiling at her as if shed
just realized Kerry was there. No peanut butter, one kid is
allergic to dairy, someone else is allergic to gluten. I cant
give Carton soy nut butter and jelly every day.
Brandens mom shrugged. Branden doesnt eat anything
but Lunchables anyway. They want to take the Lunchables
awaythey can buy him lunch. Im done.
I wish I could use nuts, Kerry said. Jason really needs a
lot of protein. There was a slight pause, and then the other
moms continued talking. Kerry realized it had not been her
turn to talk. Was she ever going to get this right? She leaned
back to check on Jason again, then heard the crying. She
and Brandens mom charged over to the ball pit.
Jason was standing in it, wailing. He pushed me!
Branden was backing away from him. He threw balls at
me and I told him to stop, he yelled. His mother coaxed
him out of the ball pit to soothe him.
Kerry could feel eyes on her as she tried to calm Jason
down, but hed reached that point where the anger and
fright became self-sustaining, and he screamed. She picked
him up, carrying him away from the others, and said, low
and urgently, Breathe. You must breathe. Im not put-
ting you down until you breathe. At last he drew a ragged
breath, and she said, Good. Keep breathing. He did, and
slowly the fury left him and he curled into her shoulder.
Why were you throwing balls at Branden? she asked.
You know youre not supposed to throw things.
He threw them at me, Jason said. It was a game.
Kerry winced. Jason never understood when a game was
over. She could picture it, Branden throwing one or two
balls, Jason laughing and throwing backfour, five, six,
seven, until Branden got scared and told him to stop, but
Jason would be too caught up in the game. . . .
Every day Jason got in trouble at schoolrunning around
at circle time, taking everyones toys, refusing to join the
groupand now this. She knew this would be the last party
Jason got invited to for a while.
She put Jason down and they walked back to the party.
Theyd missed the end of the play session and the guests
were in the concrete-walled room in the back, eating pizza.
No one acknowledged them when they came in. Jason ate
his kid-size half-slice sitting next to Kerry in the corner,
instead of at the long table with the other children.
Everyone sang to the birthday boy (Kerry had already for-
gotten his name), and after the elaborately sculpted Trans-
formers cake was served, Jason, uncharacteristically, picked
at his piece instead of wolfing it down.
The birthday boys mother smiled brightly as she handed
Jason a goody bag, but no one else did, and Kerry was
glad to be outside at last. Jason peered into the plastic bag.
Wow, candy!
Kerry silently groaned. Candy was about the last thing he
needed. Hey buddy, lets go to the playground and well
have the candy later. OK?
Jason beamed as if absolutely nothing had ever been wrong.
Sometimes that annoyed Kerry, how he could switch moods
just like that, but today she was glad of it, so she didnt
have to think about how many potential friends they had
frightened off today. Lets go, Mommy!
They drove over to the playground, Kerry debating how
long to wait before tossing the candy in the trash and pre-
tending theyd lost it. She studied him in the rearview mir-
ror, his soft little-boy face, his innocent brown eyes. Not
83
for the first time, she wondered whether she was really
equipped to raise him.
Jason jumped out of the car as soon as she unsnapped his
harness and was halfway to the playground fort before
shed slammed the car door. She sighed and followed.
He clambered around the climbing bars and up the steps to
the wooden tower, threw himself down the slide and bound-
ed up to do it all over again. Kerry realized there was anoth-
er boy doing the same, and Jason ran after the boy, joining
in without asking. Kerry didnt think she could face another
scene today. She was liable to drive him home and sit him
in his room until bedtime, just so she could cry in peace.
The other boys mother, short-haired, in cargo pants and
jean jacket, sat on a bench nearby, studying her phone. Oc-
casionally she glanced up to check on her son.
Jason and the other boy were sprawled in the dirt, absorbed
in the toy truck the boy had brought. Jason said, Let me
try! and took it from him.
84
Kerry called out, No, Jason, give it back! She glared at
him until he handed the truck over.
Kerry turned her head to see the other mom. Shed looked
up at the sound, but didnt appear upset. Still. Im so sor-
ry, Kerry said to her. My son has ADHD. Hes not good
with social skills.
Oh no, its fine, the other mom said. Kerry hesitated,
looking back at Jason. He and the other boy were going
honk honk, then giggling. Kerry felt the tension in her
shoulders ease, just a bit.
The boys hopped to their feet and began to race around the
fort. The party began to recede in Kerrys mind, like a bad
dream.
The other mom smiled. Hes adorable, she said. Whats
his name?
Finally, Kerry smiled too.t

The Day the Lights Went Out
at Kellogg Bowl
I
stare down a cluster of bowling
pins in the second frame when a
peculiar feeling courses through my
body. I sigh. I quiet my body and stride,
wobble-kneed toward the fault line
and arc my right hand back creating a
straight line with my left.
How did I get here?
The twelve-pound, puce colored ball,
deeply scarred from decades of being
tossed down the Kellogg Bowl lanes,
leaves my hand. A simple, white pen-
nant representing someone named
Yamisaki, champion of 1994s greater
Clackamas County bowling league
hangs crooked on the wall above the
pins. The bright reflection on the glossy
hardwood points at the headpin, as
though I require further direction. The
ball hits the ground with a resounding
thud, rolling cacophonously, widely
missing my target and grazing two pins,
which are charitably added to my previ-
ous score of three.
Erick Mertz
I turn around. What greets me are
unexpected, enthusiastic cheers from
Rich, my client with a developmental
disability, who already has a strike in
hand. He rises from his seat and greets
me enthusiastically as I return to the
scoring table.
Great, he shouts as he replaces me at
the ready. That was a good job. I fall
into my seat and look up at the anti-
quated, sixteen-bit scoreboard. In terms
of the score, I am already down badly
to Rich. Then another epiphany comes
as I watch him follow my five-pin
frame with a solid nine. Score doesnt
matter.
What matters is that youre here.
Rich and I selected this bowling alley
from two, only a few miles across the
highway from one another. Their Mon-
day afternoon prices were better, and
developing budgeting skills are among
the goals for our time together.
PERSONAL ESSAY
The Kellogg Bowl is ancient, aged
poorly in the way old cinder block
buildings often do. They become the
eyesores youre sad to see razed for
new, more modern construction. When
I offered Rich our options over lunch,
he smiled.
Either one, he says. Fine with me.
I have known Rich for a long time.
As we catch up on our week apart, we
recognize simultaneously that he has
worked at his pet store job for almost
ten years, a job I secured for him while
in high school transition, and helped
him maintain as his case manager over
the last decade. Now out of that role,
contracting back with the same agency
I once helped run, Rich has become my
community inclusion client. This means
that every Monday afternoon we go out
exploring recreational options he would
not be able to otherwise access. Today
was supposed to be hiking and a dog
walk but because of the deluge of warm
rain, we chose bowling instead.
85
Our lane is at the far left end of the al-
ley. On the cinder block wall someone
has painted a white on black back-
ground mural depicting, continuous
from left to right, an old time music
show, an alien/UFO invasion and a
mountain lake scene amid a mid-sum-
mer frolic. At first glance the muralists
choices makes little sense, aside from
whimsy, but then I make what seems
like a logical connection in the constant
country and western music soundtrack
and ads for Saturday night cosmic
bowling. Someone wants to connect the
dots for me.
What do you think of that? I ask,
pointing to it.
Cool, he replies. Definitely cool.
Straight off, Richs promise that hes
no good at bowling proves empty.
He throws a spare and strike in his first
two frames, a feat he follows up with
applause for my subsequent tosses. The
only two bowlers at 2:15, we laugh as
I corral my ball and attempt another
smooth approach of the fault line.
You can do it, Rich shouts, still clap-
ping as I squeeze the ball with my
thumb and middle fingers. Come on.
I remember meeting Rich, eleven years
ago now. I still think back on our first
afternoons together each time I pull up
to his family home, overlooking the old
highway and a noisy train yard. As a
new case manager, I had never experi-
enced the chaos of a fully functioning
childrens foster care home. Richs hag-
gard, yet kindhearted parents somehow
found the time to be gracious to me on
every visit. We would sit at the kitchen
table after my responsibilities were
over, talking about college football,
gardening, and the bittersweet task of
keeping up old cars.
Through those early conversations, I
learned that Rich and his sister were
their first foster children, each adopted
before reaching their fifth birthday. I
86
could have gleaned that from paper-
work, but they freely told the story. In
the formative years to follow, Rich had
witnessed a parade of young, vulner-
able people passing through his house,
some staying a short time while others
stayed for the duration. When we first
met, Rich was nineteen, transitioning
out of high school, an age when most
young men focus decidedly on me.
Not Rich. He would prove an excep-
tion to so many of my preconceptions.
Acutely aware of the hardships and
turbulent struggles of others, Rich ori-
ented himself around we. I appreci-
ated that quality first when two younger
foster girls interrupted his annual plan-
ning meeting, bawling to his unsuspect-
ing parents.
More impressive than the uncommonly
Rich simply smiled across the kitchen
table as they tended to them. Theyre exhibited a genuine streak of altruism.
having a really rough time transitioning
to the house.
After the first game and a sixty-seven
score, I find my stride: a strike, spare,
strike, and then a hard nine. I begin to
feel my bodys gradual assumption of
proper form, focus, muscle memory, a
groove of breath meeting execution.
I discover something else in the morass
though. As my performance improves,
score piling up more impressively, the
scores importance ebbs. This feels
foreign. I am, by nature, competitive. I
walk back after a good frame without
even glancing back up at the score-
board. I look at Rich instead, cheering
as he rises from his seat to address his
next frame. Our game.
In the sixth frame, I drop a five and a
three, bringing my score up to a robust
seventy-two. Rich begs for a high-five.
Whats up? I ask.
Youve got seventy-two, he says.
Youre already ahead of last game.
My primary responsibility as Richs
case manager was to help find appropri-
ate supports for his many goals. On a
caseload of forty-five, his goals were
among my favorites. He wanted to par-
ticipate in Cycle Oregon, an event he
trained for with his neighbor. As a part-
time pet store employee, fascinated
with rodents, Rich bred rats and sought
support setting up a small business sell-
ing the litters back to his employer, but
only on the condition that they become
pets. When we discussed the reality
that some of those rats would inevitably
become reptile food, I remember he
smiled and shrugged, saying, Oh well,
I suppose a snake has to eat too.
expansive nature of his goals, Rich
Before his placement in foster care,
he had experienced a few of the hor-
rors that some unfortunate children do.
Abuse. Instability. Drugs. Everything
was on a downward spiral. Richs
placement with his adoptive family
saved his life.
Sadly, stories such as Richs are com-
mon. He internalized it differently
though. He wanted to help. When his
church put together a drive to adopt
a child out of an abusive situation, he
was front and center in their fundrais-
ing efforts. He was tireless. He knew
what that child was going through and
would do anything to help him finally
find some peace.
I distinctly remember walking out of
that meeting. I remember being im-
pressed. I remember a feeling of awe. I
remember that I felt lucky just to know
someone like Rich.
In the ninth frame of our last game, I
step to the line. I approach, hurry my
step and drop my arm to let the ball go.
Thud. It rolls. Its path begins on the far
right side of the lane but arcs sharply
left. As it approaches the shadow
around the pins the ball performs a bi-
zarre trick. Before rattling off into the
gutter, it bounces off an unseen object,
careens sharply upward and left, bounc-
ing off the cinderblock wall striking the
hood where it shatters the bulbs over
the pins.
Everyone stops. The newly arrived
bowlers a few lanes to our right gawk,
jaws fallen to the smooth hardwoods.
Rich laughs. I stagger back, lose my
footing for a brief moment as the at-
tendant hurries out from behind the
counter.
What happened?
I shrug. I try and explain, a narrative,
which only serves to infuriate her.
The pro shop attendant, a balding man
whose name is certainly somewhere
memorialized on the wall of perfect
games, steps out and scratches his glis-
tening pate.
Ever seen that, Arlo? she barks back.
He shrugs too. Without a word, he van-
ishes back into the store.
No, Rich replies, not realizing who
the attendant was talking to. I have
never seen that happen before.
Well, she says. You guys cant stay
in this lane anymore. And Ive got
league guys coming in here in a few
minutes, so Ill say, youre done.
Before I can protest, Rich replies.
OK, he says.
Then he bounces from his seat and
finds his shoes in the wall of cubby-
holes. She is satisfied that he speaks for
both of us and shakes her head as she
strolls back up to greet the small crowd
of early arriving league bowlers.
Rich and I pay. We carry on a conversa-
tion with the flabbergasted attendant
before exiting into the rain. Running
across the parking lot, we find refuge in
my car.
Sorry we couldnt finish the game.
Dont worry, Rich says. That was
the best darn bowling day ever.
Games go unfinished. Spares are some-
times left open. Often the best we can
say is that we are better now than we
were. Our finest, most memorable mo-
ments in life are often the product of
genuine intentionsand chance.
Rich reminds me that this is true. He
has for a long time now.
How did I get here? More like, how did
we get here?t
87
PERSONAL ESSAY
A Walk and a Talk Brothers
Defeat Willowbrook
Allan B. Goldstein
B
ig steps. Take big steps, I insisted.
My fifty-nine-year-old younger brother smirked, knowing
we had hit upon something important.
Swinging his arms to counter-balance each step along the
New York City concrete street, he strode forward, parting
the morning rush hour people-traffic before him.
See, you dont drift off to the left like a drunk man. A little
speed and you stay on course. I had just instituted our new
regime: no holding onto my arm. Long steps, I continued.
Fred, a man with developmental disabilities, had been ac-
customed to holding onto someones arm while walking,
leading to inattention. His day program counselor claimed
it was because of his eyesight; some claimed it was because
of his poor balance. I, with the skepticism of a big brother
and fourteen years experience as his guardian, felt that arm
holding was a learned dependency.
Fred was engaged in becoming a personthe person lost
during sixteen years in the infamous Willowbrook State
School for the Mentally Retarded and twenty years in a
group home that had infantilized himhe always could
88
dress himself; he always could make choices; he always
wanted to learnbut people always did things for him, and
being human, he got used to it. Help me. Help me. Help
me, won attention and connection, so he only did what was
expected of him. My brother associated relationship with
dependency, so as Eunice Kennedy Shriver had said, Fred
became lost in the system set up to serve him.
What did Fred lose by being lost?
Belief in his abilities.
We were on our way to JobPath, an agency that helps peo-
ple obtain meaningful employment. No more working for
pennies an hour whenever industrial piecework trickled into
his day habilitation program.
My brother demonstrated monumental change in the last
few months, having just graduated to a group home with
fewer support staff. He had more freedom but also more
responsibility. Now, he turned out the lights when leaving
a room; now, he folded his clothes and placed them in his
drawers. Now, he was often in the community, the Ameri-
can Natural History Museum being his latest sojourn. And
because there was no household cooking on the weekends,
the residents often went to restaurants. With increased
exposure to typical people, Fred was having more model
behavior to copy, learning the give and take of societyno
crossing the street until the green man appears but looking
both ways anyway. No blowing your nose and placing the
used tissue on the dining table. And since everyone had
door keys, he stunned me when he instructed his build-
ing doorman that the first set of building entrance doors
should have a lock, and that Fred should have a key. Freds
recurring smiles, energy, and difficult to understand but
unrelenting banter indicated enthusiasm for this challenging
environment.
My brother was a man in control. Walking ten blocks from
his residence to his intake appointment at JobPath, an ap-
pointment I had been focused on for the past nine years,
had led to this experiment of walking independently and
not getting upset when bumped into. Fred has always
worshipped me, so my attitude toward an endeavor often
became his. And I was annoyed by his inability to walk . . .
with purpose . . . in a straight line.
Five paces ahead of my brother, on this sunny spring day
along this stretch of Fifth Avenue just below 34th Street, I
turned to find a face of fury set behind cockeyed eyeglasses
atop a 5 2 body drifting toward doorways and glass walls.
A setback?
Retreating to where he was standing, I said, Whats the
matter?
Ehhh. This had to be a reaction to the crowd of rushing
people. Fred was sensitive to disorganization.
We have an appointment at JobPath. They will assist you
in getting a job. You said you want this. No more screwing
around. You have to focus. Put one foot in front of the other
and move forward. Walk! Patience is an attribute of sib-
lings of people with disabilities; compassion is another. But
sometimes these are trumped by the additional sibling attri-
bute of persistence, propelled by a niggling fear of failure.
Come on! I said. Long strides! He was probably incorrectly placed from the beginning,
* * *
I became Freds guardian when our mom died. Dad had
already been dead ten years. I barely knew my brother
before then. Our parents had been his connection to life
in the mainstream world. Now no longer the estranged
brother, and observing that the professionals surrounding
Fred were overwhelmed and underpaid, I sensed that there
was more to my brother than someone requiring assistance
to eat and get ready for bed. He showed me this during our
interactions: I was surprised when he understood during a
telephone call that I needed him to inform a counselor that I
wanted to speak with her and the night in his bedroom that
I told him Mom had died, and he pointed to the ceiling and
said, Im next. Abstract thought was not expected from a
person with Freds then anachronistic label of severe men-
tal retardation. I knew there was more to Fred when I had
to lecture him that he couldnt flirt with all the girls and he
responded, I like Michele the best. I knew there was more
to Fred when he pointed to my stereo system and asked not
how to work it (he had already stunned me by turning it on
while I was out of the room) but why the sound came out.
The label severely retarded meant minimum expectations
engulfing him and eventually infuriating him, which led to
his rebellion.
Why is food stuck in his teeth whenever I see him? I
asked, attuned to the then medical opinion that plaque
build-up had caused many heart attacks among people with
developmental disabilities. As it is, several of his teeth have
rotted and been removed.
Its his choice, counselors replied, absolving their inef-
fectiveness, adding, Your brother wont shave . . . . Your
brother wont bathe . . . .
Fred played them and they didnt know it. They were un-
aware that he was telling them he was unhappy, that he had
become a person with mature needs. Instead, they men-
tioned medication, such as prescribed for another resident.
Sometimes we miss the old Susan, the then manager had
said to me, referring to the successful deletion of person-
ality. Fortunately, when I informed Fred of the possibility of
moving, he said, I gotta get out there!
said the residence coordinator for Freds new group home.
89
Today, my brother is referred to as having a moderate intel-
lectual disabilitybut I believe he just has learning issues
from lack of opportunities to learn. I think he has speech is-
sues because asphyxiation at birth diminished control of the
muscles that shape sound; I think he has knowing issues
because of difficulty focusing his thoughts, exacerbated by
embarrassment when not understanding somethinghell
often stop a learning activity, saying, My head hurts.
None of these things should have prevented him from enter-
ing 1950s society. But they did. Doctors told parents what
they thought parents wanted to hear: send him away. Dad
wanted Fred to stay home. Mom didnt want the 24/7 job,
which was required until parents began networking to create
the services that exist today. So Fred went to Willowbrook,
where he was not shown how to defeat the characteristics
that would define him as different . . . where his desires to
learn, to make music, and to have a life went unheard.
In art class, he spends two hours focused on drawing
these, his proud program counselor recently said, display-
ing work with Joan Mir colors and Jackson Pollock lines.
You never know what talents youll discover in these
guys.
These discoveries throw me into sadnesswhat could my
younger brother have accomplished with a different his-
tory? When first meeting my wifes infant godchild, Fred
said, You should have one, acknowledging my childless-
ness. And car indicates his disapproval that I only rent.
90
Mickey Mouse! means his dream excursion to Orlando
that I know we must take. And this morning, he wanted to
walk to JobPath.
* * *
Oh, Im so sorry, said a well-dressed, middle-aged
woman after colliding with my brother on a corner. She
had darted to make the light and Fred stood his ground, not
quite quick enough to maneuver.
Im sorry, Im sorry, said the sincere porter rolling a rack
of coats. He and Fred had brushed shoulders.
Its okay, I assured both. Its okay.
And it was okay because in the past Fred would have
whined, complained, and violently reacted to being touched,
all remnants of being hit by Willowbrook residents. But
now he simply reported, He bumped me, or She hit my
arm.
I witnessed the stride of an athlete, a man moving forward
while rhythmically swinging his arms . . . and laughing. It
had to have felt good.
Thats great, Fred! You look great!
My younger brother no longer needed to hold onto my
arm.t

Listen to the Children
Stephen J. Bedard
I
have certain memories that I lock away in a special
place because accessing them causes tremendous anger.
This is one of those memories.
My wife and I have five children; the two oldest have been
diagnosed on the severe end of the autism spectrum and
both are nonverbal. Our intention is to provide good experi-
ences for all our children and this includes attending camp.
The previous summer, we had sent our oldest son with au-
tism to a week-long overnight camp. He had a tremendous
time, and we heard from others that the experience had been
very successful. We were eager to send him again.
Many months before the next camping season, my wife
made arrangements with the organization. Our sons needs
were explained, and it was agreed that they would provide
an aide/worker to support him.
Our son was so excited to go back to the camp. Even with-
out words, his smile spoke volumes about what he felt. We
arrived for registration and saw volunteers from the previ-
ous year who were happy to see that our son was back.
They remembered how much fun he had last year.
That evening, I received a call from the camp director. He
had no record of the arrangements my wife had made and
was not willing to assign an aide for our son. He indicated
that they had no idea how to engage our son, and they had
been keeping him in the sound booth away from the other
children. They wanted me to pick him up right away, but
since he was already asleep, they allowed me to do it in the
morning.
PERSONAL ESSAY
Picking my son up after less than twenty-four hours of
camp was one of the most difficult things that I have ever
done. Although he seems low functioning on the outside,
he is extremely intelligent and understood what was hap-
pening. I was extremely angry and could not look the camp
director in the face. They had made no effort to include
him, even after his successful camping experience the year
before.
The following afternoon, I was sitting in our living room.
Our three youngest children, who were all four and under,
wanted our son to play with them. He often is in his own
world, but that did not stop them. They kept at him and
figured out what he needed in order to join in the play. The
next thing I knew, my son with autism was running around
and giggling with the rest of our children.
While this gave me great joy, it also reignited my anger.
Why is it that people trained to work with children were
unable to engage my son, and yet children, who would soon
be starting kindergarten, were very successful?
It comes down not to skills and training but to motivation.
That camp was not motivated to include a child with au-
tism, so they sent him home. My young children were moti-
vated and kept trying until they broke through.
Perhaps professionals need to become more like
children.t
91
POETRY
Sean J. Mahoney
Triple Feature
And I happened upon
a grip of thug plaques
seated round a table,
napkins tucked in collars,
flossing and drinking
water. My water.
They look at me,
their eyes terse and tiny hands
crooked, set apart body wide.
Why you here?
You got nothin on us.
Right. I settle in, curl on
the floor beneath them
hoping crumbs I catch
or detect can be reassembled
as functional nerve
and sovereign pain.
*
I happen upon a pack of lesions
heading home after their shift
in my white matter,
mind picks hoisted
over their shoulders,
headlamps still brightly lit,
overalls stained
with sheathy bits
and boots sulfur shiny.
I ask if they are almost done
in my shaft. If they will move
soon on stellar working models.
They reply in unison:
92
No, we cannot go until
all pathways detoured.
No, we cannot go until
response times deferred.
*
A bad dream of the Brain Capades:
skaters scarring my nerve
glass and I have no mind smoothing
my ice, no refreezing period.
Blades. Precision glee and edge
movement, gliding sheath to sheath,
T1 racing narrows of my grand
column. A triple klutz. A slow cow.
Severing junction points, splaying my
ice open and revealing pristine
axonal floor beneath.
Airborne events: mile in ice crystals
the result of stabbing turns,
a gorging, up and over
the bannister into stands full
of clueless medicines.
*
Features over, I take the push
broom, straighten as best I can,
steady myself and gather
tissue reserved for new damages,
ushering it in to rail cars under
the floorboard. The track leading
anywhere safer than here.

Please Give Us a Call
Tamar Auber
I
live most of my workday in silence, tapping away at my
keyboard, stopping only to rub the head of my thirteen-
year-old rescue mutt or grab another cup of strong,
black coffee. I refill my mug so often, in fact, my mother
has warned me I am coating my gizzard with caffeinated
goo. I dont listen. I am always on a deadline. Besides, I am
pretty sure death by gizzard goo is not a real thing, at least
for humans anyhow.
Writing can be time-consuming, lonely work. I count my
hours and my mood by cups poured. On bad days, I run out
of coffee and ideas before I am done. Most days, I surrender
to the rhythm and routine of the word strings I am creating,
tap after keyboard tap, sip after caffeinated sip. Today is an
especially good day. I have time and coffee to spare when I
hit send on my last article.
Standing up and taking a stretch, I tell my dog we can go on
an extra-long walk, maybe even hit the park. I just need to
check my email one last time. That is when I see it.
Dear Tamar, the email begins before launching into a
cookie-cutter, we liked your pitch note.
I do one of those awkward happy dances that makes my dog
look up from her pillow and cock her head in canine judg-
ment.
Please give us a call at . . . My heart sinks.
The phone is not my friend. Growing up, I had bad hearing
that made hanging on the phone to gossip about boys and
PERSONAL ESSAY
school like other girls hard work. As an adult, even with my
hearing aids, the voice on the other end turns into a messy
jumble of barely heard noise.
I put the dog leash down and settle back into my chair.
Staring at the email, I dont know what to do. In a perfect
world, I tell myself, I would simply reply that I am a person
with a hearing loss and that having a phone chat is hard for
me.
In the real world, that does not always work.
After mentioning my hearing loss, I have had editors find
an excuse to move on. One even insisted that all their com-
munication with writers was done by phone (even though
they told me so via email). So if the phone posed a chal-
lenge for me, I would not be a good fit. Even when the edi-
tors agree and make other arrangements to chat, I feel like I
have revealed something about myself I dont always want
to share.
I pour another cup of coffee and try and settle down to write
a response, attempting to force words into conveying, I am
still capable of doing the job, and I really want you not to
make this phone thing a big deal. Deep down, I know that
I am the one making it a big deal. I am afraid to be rejected
again, afraid I will seem like too much trouble if I ask him
to accommodate my needs.
My last cup of coffee is long gone before I muster up the
courage to hit send on my labored-over response.
I never hear back again.t
93
POETRY

Mary McGinnis

To My Eyes
I write to my eyes out on the high desert. I write to them when Im half asleep. So that true
dream images will slip off my fingers. What I tell them comes from the inland sea of tossing
dry grasses and yucca stalks out in a field of dusty cholla and juniper bushes. Dreams and
images dont lie. Images from the weeds and pack rat nests float up from inside me. They
illuminate and warm me, the way the sun does, reflected off the glass in the winter.

I used to think my eyes were the problem. Once a rehab counselor said that people might
look at them and feel uncomfortable. Kids sometimes said they looked funny. Theyd come
up to me and ask me what was wrong with my eyes, and at one time I actually thought
something was wrong with them. Lately, I have come to know that my eyes have done no
harm. In the right setting, light glints off them, and they sparkle. Usually theyre neutral as
an arroyo. Ive come to like their softness.

Its what Ive told myself about my eyes thats been the problem. Ive been on guard, plan-
ning my route through my life, preparing for every contingency so that having eyes that
do not see wouldnt matter. I plan so I can feel grounded. In my waking life, I want to be
perfect. Im alert, I travel light, I make a mental circle around my possessions. I dont take
more than I can carry on my back or in my arms. Its only in dreams that I dont pack ev-
erything I need, forget to bring the name and address of the hotel where Ill be staying, and
wait for a drunken passenger to bring me my suitcase. Its only in my dreams that I am in a
bus station without a clue to where Im going, without a quarter for the pay phone, or with-
out my cane.

Once, distracted by poetry and daydreaming, I left my backpack containing my slate and
stylus and scratch paper up at the snack bar at Bandelier National Monument. When I got
home and realized what I had done, I was disgusted with myself. I thought about how my
writing implements could be thrown in the trash by mistake, forty miles from home. There
must be something wrong with me to have forgotten them. But I had been betrayed by my
mind. My eyes had nothing to do with it.

There have been times I have let myself go, gotten swirled around and transported by the
liquids of myself: great sex, torrents of words, pinnacles of sound. Sometimes I can do it; I
can step back from my mind, and the voices from the past talk on and on in my head with-
out me. Im there in the moment like a cholla, there being wherever I am, doing whatever I
am doing. Im like my eyes then. Im full of emptiness and light, opening the wind of now.
I am there; I am what I am.

Previously published in I Am Becoming the Woman Ive Wanted, Sandra Haldeman Martz,
Editor Papier-Mache Press, Watsonville, CA, 1994. Reprinted by permission of the author.

94
Mary McGinnis

From My Eyes
we have given you what we could:
a hazel tint
the color of some fertile strips of land
next to a river

we shift and flutter,

but the flashy impulse to see
doesnt reach the brain
its as simple as that;

we sing to you in a language of missing dots;

we touch your cheek with waters from the ancient
springs of salty water;
weve caught and held dust;

feed us with light

were hungry for what we have missed
in our craters of silence and waiting;
were the parts of you that have opened and flowered the slowest;

were the deserted, desert parts of you

that will not bloom until another lifetime
it will take some kind of Hopi spiritual dry farming
for us to sprout images.

well come back as feathers,

lizards or a swamp lily;
youll come back as antennae,
salt, or leftover uranium.

theres nothing wrong with us

that a little time outside the body and another lifetime
on this earth wont cure;
next time around, we wont be connected:

another woman, a woman other than yourself,

will see the moon from the bottom of the arroyo
and weep at the beauty of the light;
she will not stop to think about her eyes.

Previously published in: Listening for Cactus by Mary McGinnis,

Sherman Asher Publishing, 1996. Reprinted by permission of the author.

95
PERSONAL ESSAY
Whats Your Stand-Up About?
I
m a comedian. Im also the oldest
sister to a ten-year-old boy with
Down syndrome. In comedy, we
talk about our lives. We have a plat-
form, no matter how tiny, to use as
we please. You can use it to talk about
your genitalia, rant about things you
hate about the world, or share your
hilariously keen observations. One
observation I had was how strange it
was that my little brother, Cameron,
was invited to go to the front of a line
of hundreds of families waiting to see
Santa Claus one Christmas season. His
legs work, hes capable of waiting, but
still one of the elves recognized his
disability and escorted us directly to
the jolly old mans lap. We didnt say
no. I did a couple of jokes about how
strangers feel sorry for my brother and
give him special treatment, so we just
started taking advantage of it. I wasnt
always sure how it would be received.
I put disabilities in the category of pos-
sibly offensive, right in there with race,
religion, and politics. I worked on the
jokes, rewrote them, and retold them
over and over again in front of different
audiences until I felt my position was
clear: people with disabilities may have
special needs, but theyre also just for my brother, so they will put his
people. I wanted people to relate to my
brother and how we find the positive in
situations. Unfortunately, not all people
see it that way.
96
Paulina Combow
My biggest concern was that I was ex-
ploiting my brother for comedy. Isnt
this his story? Why should I get laughs
from it? But its not just his story, its
mine too. Hes a big part of my life,
and a life is made up of experiences,
and experiences are how we tell our
story. I have the power, albeit a small
power, to take our shared experiences
and tell our story.
When you do stand-up, you get asked
a lot of weird questions, the most com-
mon being, What is your stand-up
about? Ive never been sure how to an-
swer that, and any attempt sounds like
a little kid describing how airplanes
work. Since making these jokes into
bits and telling them to various audi-
ences, Ive been getting feedback from
people, mostly from people who also
have a child or sibling with disabilities
and understand what Im talking about.
Now that I have them on my side I feel
a lot better about it, but I mostly want
people who dont know anyone with a
disability to also be in on the joke.
I could possibly affect some real
change. For instance, people feel sorry
shoes on and tie them. True, someone
else can probably get them on faster
than he can, and hell be more than
happy to let you do it for him. But he
also needs to know how to put them
on, and to know the feeling of indepen-
dence when he does it himself. I was
talking to a man whose daughter has
autism. He told me when they are eat-
ing out, his daughter will ask for des-
sert, and even after he tells her no, the
person serving them might bring her
dessert anyway, on the house! People
think theyre doing a nice thing by giv-
ing a child with a disability a cookie. It
makes them happy. But what people are
really doing is going against the healthy
eating habits and restraint that parents
are trying to instill in their children for
when theyre not around to tell them
no.
My little brother was five when I
started comedy. It was a sensitive time
for my family because he was going to
public school for the first time and be-
ing incorporated with normal kids.
We were concerned he would be picked
on and not be able to tell us. About
once a week I had to talk my mom out
of homeschooling him. There were
instances of kids picking on him, but
more often it would be Cameron who
was the aggressor. He didnt know how
to express himself, or wasnt being
understood, so he got his point across
by pushing or shoving someone. Thats
when I came up with the story Super
Cameron, and have been reading it to
Cams homeroom the first week of each
new school year. Its from the perspec-
tive of a normal child wondering
why the kid in their class is different. I
read the story and then let the kids ask
whatever they want, and I answer as
honestly as I can. Its seemed to help
them understand what Down syndrome
means and that he can be treated like
any other kid, not a fragile porcelain
figurine.
Kids arent the only ones who can be
bullies, or say hurtful things though.
Ive also had to grow a tough skin in
comedy. Obviously we dont use or
condone the R word in my family.
Its not like I never said it. I was just
as guilty as anyone until it affected
me, and I understood what it felt like
to have someone I love labeled with
the R word. But in comedy, anything
goes. I would go to open mics and have
to hear people throw around the word
retarded, or hear the punchline of a joke
be how someone looked like they had
Down syndrome. We all know the short
bus jokes or the comparison, thats like
being the smartest kid with Down syn-
drome. It totally pissed me off. I was
offended. How dare they say that in my
presence? Then a wiser comedian told
me Id have to get over it, so eventually
I did. You cant be offended by just the
things that affect you and not everything
else. You cant pick and choose whats
off limits and whats okay. Its the same
as how a racial joke may not offend me
because Im white, but a sexist joke
would piss me off because Im a woman.
Its all or nothing, baby. If the jokes not
funny, eventually that comic will dump
it (unless they suck), and if it is funny,
then maybe you should learn to laugh at
it too.
Ive even heard of a fellow comedian
saying Im not funny, and I have to
use my R***** brother to get attention.
Of course it makes me sad, and I hope
my brother never has to hear words like
that. But more than that, I understand it
comes from insecurity . . . or maybe just
ignorance. I also understand I wont be
able to change everyones minds, but
each one I do is a win.
For now, Im still working on making
disabilities funny, and being an advo-
cate for those with disabilities. There
are comedians who have disabilities
too, and they do a kick ass job. Ive
even started bringing my little brother
to family-friendly open mics and sign-
ing him up. Hes been treated like such
a celebrity his whole life, that he feels
right at home onstage. Maybe the day
will come when he can articulate it
himself, and Ill have to go back to
jokes about food (my biggest weak-
ness). Hes already done a great job
in nine years of showing people how
much a person with Down syndrome
can accomplish. Until then, Im happy
to tell people what my comedy is about.
Its about my brother and me going
through the world like we own the
place, taking the good with the bad, and
having a killer story to tell at the end of
the day.t
97
FICTION

Memorial Day
Kelly Brown

T
hey are halfway through the parade and we are
stuck in a construction zone biting the inside of our
cheeks, checking our phones, tapping on the steering
wheel to break the silence. We see the flags wave over the
top of construction trucks and hear the claps and laughter of
parents, siblings, aunts, and uncles watching their children
march down Front Street.
I told you to go around, Meredith says and I nod my
head. Yes.
Can you put your phone away and pack up your trumpet?
Were going to have to walk down to the park to meet up
with everyone.
What am I supposed to do? I turn to look at her as she
fusses with his trumpet and helps him put it into the case.
Her skin is turned down around her lips and theyve lost the
plush fullness they had when we met. But her green eyes
still make my heart sink far down into my gut. Even still
even after David.

David, our nine-year-old sits in the backseat playing with
his cell phone. A small trumpet sits on the seat next to him.
Its not buckled up and in case of an accident I wonder
if it will go flying out the window like those children do in
drivers ed videos. His face is floppy. Slanted eyes stare at
the screen that glows against his skin. His tongue, colored
blue from the jelly beans, sticks out the corner of his fish-
lipped mouth.
David, honey.
He doesnt respond. Keeps typing and scrolling on his cell
phone as if its more important than us.
Hey, David . . . She says again and taps him on the knee.
He still doesnt respond, hands fly across the touch screen.
His eyes look wide and glassy, and I remember the start
they gave me when I saw them for the first time. Abnormal.
David. I say sharply and her hand flies to my arm to shut
me up. I never know how to speak to him. I never have. But
he looks up from his screen, and I hold back a smile be-
cause I know I did it right this time.
What? He says, and the ah sound in what drags out like
a slur. I remember. We have missed the last three speech
appointments.
I dont know. Park the car and text me. Well meet up.
OK.
When was the last time we touched?
When we go to bed at night I search through the depths of
our cotton sheets looking for her. The smooth curve of her
foot. The hills and mounds of her breasts. Her back. Her
thigh. Two days ago I placed a hand on her back while she
laid sleeping, or pretending to be, and she moved from un-
derneath it. Buried herself deeper into a fabric cocoon.
I dreamt of David for months before he was born. I saw his
nose, hard and bulbous like mine. His eyes, soft and green
like his mothers. I saw his feet. His hands. His ears. All
perfect. All normal.
When David was born I was disgusted. Where was his
nose? It was there, yes, but flat and pressed against his face.
His nostrils were too large. His ears, small and pinned back
against his head. The doctors cooed at his pink tongue,
which always found its way between his lips, but I frowned
at it. Kept trying to push it back in there like each attempt
would somehow change him back. Make him normal.
She cried for a year. Each day she held him in his nursery,
his perfect nursery, and cried so hard his face was wet with
her tears. She hated me for leaving each day for work.
Why cant you stay and take care of him, shed whisper

98
at night when we laid in bed. Each day as I left, I felt her
growing farther and farther away from me.
It wasnt the end because it couldnt be. Doctors told us he
would be fine. He could function like any other kid. But he
wasnt any other kid and he never would be. We went to
speech therapists, physical therapists, behavioral therapists.
We did everything we were told to do. We lived with it.
Ill park the car on 4th and meet you. Text me and let me
know where you are, I said to Meredith. Good luck, bud-
dy. I turned back and patted my hand against his leg.
He didnt say anything, hopped out of the car, and ran
through the traffic with her. His limbs looked floppy, but I
could see the strength that carried him built up from years
of physical therapy.
Traffic finally cleared and I parked the car and ran to meet
Meredith. She was standing under the awning of a local
ice cream shop with a baseball cap placed over her brown
ponytail.
Barely made it. She said to me.
I dont matter. Did he make it? I stare at her wanting
badly for her eyes to meet mine. I want her to see my sin-
cerity. I want her to believe me. I want her to forget about
the years before this.
Yeah. He made it.
We stand in silence and I jingle the car keys in my pocket to
help cut out some of the tension. Kids in colored uniforms
carrying red, white, and blue flags march down the street.
Parents shout and snap pictures while their kids continue
onward just like they practiced.
I can see the Greenside Middle School banner coming our
way. The green, silver, and white colors flash light over the
sidewalks. The drums are snapping in time and the kids
walk along with it. I reach into my pocket for my phone but
find nothing.
Shit. I forgot my phone. Dont you have yours?
No. I was expecting you to have one!
We both stare at each other, baffled as to how well be able
to capture our own sons achievement.
Look for someone we know. They could send it to us,
she says, and we both start scanning the crowds looking for
a parent we might recognize. A mother of one of Davids
friendsnot that there are many. I find no familiar faces.
I dont know any of these people.
Jesus. Ill just ask someone, Meredith says, and she starts
weaving through the crowd. Excuse me, sir. Excuse me, I
can hear her shouting.
My eyes are racing to follow her. Every single person in
this town is out for the Memorial Day parade. Everyone.
Her baseball cap, the one with the cardinal on the back,
disappears in the crowd. I unconsciously move forward and
follow her footsteps.
The sound of drum beats is deafening in my ears. The
Greenside band is directly in front of us. Except, its the
drums I see, not the trumpet section. I forget about Meredith
and begin scanning the group for David. I look for his dop-
ey-looking eyes, floppy legs. I look for his smiling face, his
strong limbs, and his pride when hes carrying his trumpet.
I see Meredith dart off ahead and I begin to chase her. I can
see him, through the sun hats and children atop their fa-
thers shoulders, I can see him. Does he see us? I want him
to see us. See me, David. I am screaming, look at me. I am
your father. Appreciate me. I am proud of you.
Shes running head of me now. She pushes people aside and
shouts for him. I am running hard. My heart beats against
the bones of my chest and sends vibrations through my ears.
I reach my hand out to grab hers and I feel her squeeze it
back. She squeezes it and I feel electricity move through my
fingertips, my palm, my wrist.
David, we shout together.
David.t
Previously published in 3288 Review,
May 2016. Reprinted by permission of the author.
99
FICTION
A
re you sitting down?
She sits but doesnt answer. She presses
the phone to her ear. He says hes from
some hospital. Which hospital? she
asks, but again she doesnt register the
answer.
He says, Your mothers here with us.
He says, Im so sorry. Whether or
not hes sincere is not something she
notices. Shes been with us for three
days now. Almost nothing else he says
gets through, though somewhere, hes
still talking.
For three days, she says. Her mother
is deaf. Was there an interpreter?
There was not. Im sorry no one con-
tacted you sooner.
What hospital is this?
100
The Slipping
Katie Booth
Maam? Can you come in?
She hangs up the phone.
* * *
The kitchen ceiling is soggy with wa-
ter; the tiles wane with the weight of it.
Its nothing all that new, a week or so
now, something wrong with the pipes.
She tries not to focus on it, but the cabi-
nets havent been secured to the wall at
the top for years. The tilt of the ceiling
has been keeping them in place. So
long as the bottom never comes loose,
the angles wont allow the cabinets to
fall. Her husband, the failed mathemati-
cian, explains it over and over, the prin-
ciple of it, the angles; even though the
cabinets are barely attached, they wont
fall. And now they push into the bot-
tom, and the water seeps towards where
they push out from the top.
She stands and dials her husband. As
soon as it stops ringing she begins to
speak, but the words are slipping and
her sentences settle somewhere be-
tween languages.
Three days since? He tries to under-
stand.
The hospital. I cant drive.
Are you sitting? She is. He will be
there in ten minutes.
They didnt call you know; no one,
theres no one, and they didnt; she
cant talk she
He says more things, then; hes coming,
she hears that. They hang up. She fills
a yellow plastic cup with wine. She sits
back down at the table, looks back up
at the wall.
Her mother.
Her mother filled with such pride, too
much pride. She wont ask the ques-
tions she should; shes been taught to
pretend to understand more than she
does. Shes been taught that not under-
standing is weakness. She can read lips,
its true, but even that is such an inexact
science, and everyone knows that a sec-
ond language, English, becomes almost
impossible in times of trauma.
The woman tries to remain hopeful.
There are things shes learned from her
mothernot so much the pride, but the
way of acting as though the world is
as it should be. But now it seems laws
dont make any difference at all, and
she is tired of waiting for them. The
hospital was supposed to hire someone.
Her mother, with more integrity than
does her good, laying in a hospital
room with no one. How could it be that
no one called until now? How could
three days have gone by?
It was surprising, but then again, it
wasnt. There was the law, the ADA.
She was forty-three when it was passed,
right in time for her father. He was in
some hospital somewhere; her mother
and she were there to learn what was
wrong. She told the hospital they would
need an interpreter. She told them she
wouldnt do it. She had to draw the line
somewhere.
All her life her hands were someone
elses words. She made her living this
way, bridging one language to another:
court cases, doctors visits. Before it
was her livelihood, it was her life. She
interpreted bill collectors, arguments,
evictions; she was only a girl. But now
there were protections. Now places like
hospitals had to hire someone. They
could not make her do it anymore.
They would have to hire someone; that
was the law. She explained it patiently
but firmly. She wouldnt do it, not this
time.
When the interpreter came for her
father, he came with a handbook to
look up the words; he did not know the
language. And so she sent him away
and sat there between her father and
the doctor and became the interpreter:
bound by law to remain neutral, to be
only the doctors words. Her hands
wouldnt be able to reach to her parents
and they wouldnt be able to comfort;
they were the doctors words. The
beeps her parents couldnt hear, swoosh
of the machines hooked to her father.
And her hands said it, just as the doc-
tor did; they said Cancer. Less than a
year.
And that was the first time language
slipped from her; the first crack.
* * * who knows how many rights were
She tells me: My hands trembled in
the language for five years after I said
those words. I justI just couldnt
make them say anything else.
Nobody but she ever thought to worry
about her homes stability. On the
outside, no one seemed to see how
precariously everything balanced. The
cabinets, the pipes, the whole house is
slanted, and she has nightmares that
it falls into the lake. The whole side
of it slides off, her bedroom exposed,
the living room empties, the higher up
the bedroom the farther it falls, and as
it does she regrets that they lifted the
roof, that they moved the bedroom up,
and that they put in a new bathroom,
and the water leaks into the kitchen and
the cabinets and everything, everything,
readying for the fall. Her mother, three
days alone and dying.
She waited, her mind divided: there
were all the things she would have
to do, all the people to call, all the
arguments to be made. Who knows
what other laws had been broken,
disregarded. But there was this, too:
her mother. Her mother, alone. Her
mother, who would admit no weakness,
stripped of strength. It seemed that ev-
erything was balancing where it should
be secured: pushing in somewhere
it shouldnt, its weight leaning into
another failing structure. She looked
down at her hands; she watched for the
tremor.t
101
FICTION
Louder Than Words
Celeste Bonfanti
I
m not sure what the bell at school really sounds like,
but to me it sounds like a bee got stuck in my head. See,
I dont hear like other people. Without my cochlear im-
plant (CI), I dont hear at all. And its not like my CI lets me
hear like you do. Its complicated.
Anyway, when the bell rings and Mrs. S says we can go,
I push my way through the hall and out to the bus. Missy
always holds a seat for me. For a little sister, shes not bad.
I know its not cool to sit with your little sister. But between
the noise of the engine and the noise of fifty screaming kids,
I have absolutely no chance of understanding anything.
Missy signs to me, so I just put my CI in my pocket and
keep my eyes open.
Whats new? she asks.
I dont want to talk about it.
Oh, come on, she says. Tell me.
Mrs. S says were having a thank-you breakfast for the
parents next week and she thinks it would be nice if the
class learns the signs for the chorus to this stupid song,
Love Like a Rainbow.
Whats wrong with that? she asks.
Well, as soon as she says, sign language, everybody in
the class looks at me. I see Chris with that mean-looking
smile of his. I dont know how a smile can look mean, but
believe me, it does on Chris.
Hes a bully. Missy looks serious.
102
Then Mrs. S says, Ben, maybe you can sign the verses,
too.
Why not? Youre an expert, Missy says.
See, Im the only deaf kid in the fourth grade. Im the only
deaf kid in the school. Sometimes it feels like Im the only
deaf kid in the whole world. There are schools full of deaf
kids, but my parents dont treat me like Im deaf. They talk
to me. I miss a lot, but I talk back. People understand me,
but I cant always understand them.
Except for Missy, whos a grade behind me, the only per-
son I understand 100% is Miss M, my interpreter. If I dont
watch her, I dont really get whats going on in class. Im
smart, but its non-stop talking in school, you know?
I dont want to sign some dumb song by myself, I say.
Just the verses, Missy reminds me.
Thats bad enough. And Mom and Dad wont even come
theyll be at work.
Can you say no? Missy asks.
The truth is, I probably cant. And Ill have everybody in
the whole place staring at me. Especially Chris.
The next few days are crazy. Every chance we get, we
practice Love Like a Rainbow. Miss M and I teach the
class the chorus. Chris just kinda flaps his hands around.
He wants everybody to know he doesnt care. On the play-
ground, he points and says, Hey, Ben. Whats that thing on
the back of your head? Does it turn your brain on?
Hes talking about my cochlear implant. When I was in first
grade I had an operation to get an electronic inner ear. Part
of it attaches to the back of my head. It looks like a button
and it sticks on with a magnet under my skin. Weird, huh?
Chris thinks so. I try not to let it get to me, and most of the
time its OK. But signing the song is making me feel like
theres this gigantic spotlight on me, and Chriss only mak-
ing it worse.
Then I get the stomach bug. Im sick at home for three
days, and Missy delivers my homework so I wont fall too
far behind.
Guess what? she says through a mouthful of Oreos. Good
thing she signsI could never lipread through that mess.
Theres a new kid in your class.
Boy or girl? I ask.
A boy. Hes kinda cute.
Oh, brother.
And hes nice, she says, reaching for another Oreo.
When I stopped in to get your books, he said, Tell your
brother to hurry up and get better.
I do get better, and when I get back to school I spot the new
kid as soon as I walk into class. Hes taller than all the rest
of the boys. Hes got brown hair and looks like he plays
football or hockey. And he has the kind of open, expressive
face thats easy to lipreadwell, as easy as lipreading ever
is. I can see that hes already popular. Even Chris is talking
to him. And when the new kid sees me, he comes right over.
Ben, right? he says. About time you got back here. Im
Jerry. Nice to meet you. He puts his hand out to shake, like
were businessmen or something. Then he says something
else, but I miss it.
Sorry, what was that?
I said I hope we can eat lunch together. I got to know ev-
erybody else when you were pretending to be sick.
Hes got this big, friendly smile, so I know hes not being a
jerk.
Through the morning, every time I look over, Jerry is
watching Miss M signing to me. But its not staring, exact-
ly. Its different. And the first thing he says when we line
up for lunch is, That sign language is the coolest thing Ive
ever seen! You have to teach me some!
Chris says something too quiet for me to hear, and Jerry
turns to him quick as a flash. Yeah . . .? Well, Ben knows
two languages. How many do you know, Chris?
Chris gets all red and, for once, he doesnt say anything.
* * *
The morning of the thank-you breakfast comes way too
soon. Youll be fine, Missy says, like shes the big sister
instead of a shrimp.
Theres French toast and pancakes, juice and scrambled
eggs in the cafeteria. About thirty parents are finishing their
coffee when Mrs. S walks up to the microphone. We want
to thank you all for joining us today. And now the boys and
girls want to share something very special with you. Class
. . .?
We all line up on the risers. Jerry is behind me. Just before
Mrs. S switches on the music, Jerry pats me on the back and
gives me the thumbs-up and a grin.
I block out everything but the words to Love Like a Rain-
bow.
The parents are all watching. I dont forget any of the signs.
When its over, we get a big clap, and Mrs. S makes me
take an extra bow.
Afterwards, Jerry gives me a high-five. Awesome, Ben,
he says, shaking his head. Youre a star!
Theres a tap on my shoulder, and when I turn around, Im
surprised to see Chris standing there. He says something
that I dont hear in the noisy cafeteria, and then hes gone.
Now Jerrys laughing.
What did he say? I ask.
He said, Nice job.How do you sign that, anyway?t
103
POETRY

Michael Mark

Visiting
I am drifting towards her
like vapor.

Buddha and social workers teach us

not to assume what goes on
within each others worlds.

Regardless, I see me in her mind,

through the haze of disease and
hollowed corridors of her memory.

Is he real? she wonders.

He is my father.
He is my husband?

My name, as I repeat it, comes

to visit, too; the sound
folding into the outline of my body,
bringing me closer to wherever
she might be.

For this purpose, I wear the same

yellow button-down shirt
every time, my hospice badge clipped
to the pocket.

I never know what will find

the switch.

She has remembered my goofy laugh,

straightened up and pointed,
There you are!

And for those times when I never arrive,

when the visit ends and she is in one place
and Im in another

like friends who unknowingly traveled

to the same faraway country,
and are one small, curved, crumbling,
street apart

or maybe shes in the Ganges,

and Im on the shore, head bowed.

I see that we come and go

in phases, happy when we find
each other, in our own mists.

Previously published in Wild Violet Literary Magazine,

August 2015. Reprinted by permission of the author.

104
Nancy Scott

Paul and Cheryl

Paul had Cheryls blond hair and blue eyes.
Ricardo beat her, said the kid wasnt his.
When I saw the bruises
I asked Cheryl why she stayed.
Ricardos got AIDS, he needs me, she said.

Cheryl brought Paul in when he was two.

She looked pale and edgy. Ricardo?
Cheryl shook her head. Hes really sick.
All he does is yell. His mothers here
but only to collect her cut. Shes letting
dealers use Ricardos brother like a mule.

Lifting the child to her lap, Cheryl said,

I have ovarian cancer. The doctors
give me less than six months.
Paul wriggled around, screwing his face up.
Cheryl jingled a key ring
trying to quiet him. It seemed useless to ask if
shed pursued all her options. What will you do?

Paul started to wail.

I cant leave him with Ricardos mother.
She held Paul to her chest where he calmed
to a whimper. My parents dont want him.
She looked me straight on. I trust you,
she said. Would you take him?

The call came three months later, Cheryl

was dead, Paul placed in foster care.

Previously published in the authors book, Running Down Broken

Cement, (Main Street Rag, 2014). Reprinted by permission of the author.

105
POETRY

Judie Rae

Dentist Appointment
She fears the bright lights,
the masks,
the metal tools that
scrape against her tiny teeth.

Poked by too many
white-coated strangers,
this child fears
being touched
by more

and so stiffens,
makes a plank
of her body,
becomes an impenetrable
frozen form.

A bribe, the promise

of a gift long awaited,
thaws her
enough that
she accommodates
the chair, though
she does not
relinquish her ironing-board
pose.

The dentist, honoring

this one small person,
is patient,
speaks softly to her,
shows her the mirror.
Her terror recedes
by inches.

Tears roll down

her reddened cheeks,
though she makes no sound.
Instead, she grips the armrests,
understanding the nature of objects
that do not give.

106

Tamar Auber is a political writer, editor, and photographer.
Her hearing loss can be a challenge in a fast-paced news en-
vironment, but writing helps me add to the conversation in
a way that makes it my own. She also believes that being
more visually oriented makes her a better photographer.
Both her writing and photographs have been published in
many notable venues, including the fiction anthology, Weve
Been Trumped, published by Darkhouse Books (October
2016) and Media Global, a publication of the United Na-
tions (September 2013).
Stephen J. Bedard is a minister whose five children, two
of whom have severe autism, have taught him much about
life and faith. In sharing their story, he endeavors to convey
that having a disability does not mean an end to hope. His
writings have been published in Autism Parenting Maga-
zine (2016), Alive Now (2015), and Faith Today (2014). He
also won the Word Guild Award in 2007.
Celeste Bonfanti is passionate about her work as a teacher
of children who are deaf/hard-of-hearing. She is a play-
wright; many of her plays are written especially for chil-
dren. Her work has been published by Heuer Publishing.
She says, I write because words can change the world one
child at a time.
Katie Booth writes both essays and fiction. Her work has
been published in Vela Magazine, Pittsburgh Quarterly,
Mid-American Review, and Indiana Review. Her essay,
The Sign for This, was included in The Best American
Essays 2016. Her first book has been accepted for publica-
tion by Simon and Schuster.
Kelly Brown is a social media specialist who also writes
both fiction and nonfiction. In 2016 her work was published
in Holl and Lane Magazine (October 2016), The 3288 Re-
view (June 2016), Gone Lawn (September 2016), and SOL-
ACE Magazine (April 2016).
Cathy Bryant is a writer. Her two poetry collections are
Look at All the Women (2014) and Contains Strong Lan-
guage and Scenes of a Sexual Nature (2010). She won the
Pen2Paper Coalition of Texans with Disabilities Poetry
Prize. Bryant struggles with mobility problems, pain, and
fatigue caused by chronic arthritis and fibromyalgia. She
also has PTSD. She says, I spent a lot of time sulking
about my health. Now I revel in whom I have become.
BIOGRAPHICAL NOTES
Andrea Carlisle is an editor. From 2008-2015, she wrote a
blog about taking care of her nonagenarian mother, called
Go Ask Alice . . . When Shes 94. She published a book
of fiction titled The Riverhouse Stories. Her short stories,
essays, and poems have appeared in many journals includ-
ing Northwest Review, Calyx, Oasis, and Willow Springs.
Living in Portland, Oregon, I spend my time writing, edit-
ing other writers, reading, and watching the river flow past
my front door.
Yuan Changming, a nine-time Pushcart nominee and
author of seven chapbooks, grew up in rural China. Now
living in Vancouver, Canada, he coedits Poetry Pacific. His
poems have appeared in journals and anthologies in thirty-
eight countries, including Best Canadian Poetry, BestNew-
PoemsOnline, and Threepenny Review. Changmings mo-
bility has been significantly impaired by herniated discs and
osteoarthritis.
Con Chapman is a lawyer and a writer. His humorous ar-
ticles have appeared in The Atlantic Monthly and The Bos-
ton Globe. He also had a poem published in The Christian
Science Monitor in December, 2013. Growing up, Chapman
stuttered, which he says made him more introspective and
solitary. He enjoys Ring Lardner, George Ade, and James
Thurber. . . no one is writing like them anymoreso I
have to.
Marlaina Cockcroft is a freelance writer/editor. Her es-
says and short fiction have appeared in Goldfinch literary
magazine, Strange Horizons online magazine, and The
Storyteller, under the pen name Marlaina Gray. Her son
has ADHD and autism. She says, I think it is too easy to
dismiss children as bad or unworthy when you dont know
what is really going on beneath the surface.
Paulina Combow is a writer who is also a stand-up come-
dian. She has contributed to Solo-ish blog in The Wash-
ington Post and to The Nashville Scene. Stories about her
younger brother, who has Down syndrome, have become
part of her writing and her comedy in an effort to increase
awareness about disabilities.
Glenna Cook, now a retired manager from a phone com-
pany, writes poems, some of which have appeared in The
Avalon Review (Summer 2015), Quill & Parchment (Spring
2014), Gyroscope Review (Fall 2014), and Raven Chroni-
cles (Summer 2013). Writing fills a space in my life . . . it
gives me a voice. At eighty years old, she is healthy, ac-
tive, and even learned to play the violin at sixty-six.
107
Liz Dolan is a retired teacher. Her two poetry collections
are titled They Abide and A Secret of Long Life. She has re-
ceived fellowships from the Delaware Division of the Arts
in both poetry (professional/established) and emerging fic-
tion. She is a grandmother of nine, one of whom has Down
syndrome.
Bert Edens is a customer support manager, a martial arts
instructor, and an author. He has published two anthologies,
Living Miracles: Stories of Hope for Parents of Premature
Babies (nonfiction, 2001) and Baby Shoes: 100 Stories by
100 Authors (fiction, 2015). Edens says, As the parent of a
son with special needs, I have a passion for helping others
who might need a little extra assistance or encouragement,
especially in the face of societal negativity. Perceptions can
and should be changed.
Alisa A. Gaston is a writer whose essays have appeared in
The Montreal Review (March 2011) and Brain Child (De-
cember 2015). She also contributed her essay, In an Age
of Science, to an anthology published by The Sea Change
Program (October 2014). Gaston shares, . . . I have gone
through much turmoil as a child and an adult. While those
experiences have dragged me down, more importantly, they
have ignited me. It is that heartiness that I want to pass on
to my young daughter who has a disability.
Allan B. Goldstein is a senior lecturer at New York Uni-
versity, Tandon School of Engineering. He earned a master
of arts in disability studies in 2015. Goldstein has realized,
relatively recently, the extent to which his life has been
defined by his younger brothers disability. He states, As
an actor, I escaped into others lives; as an ESL instructor, I
assisted those seeking to fit in; as a writing instructor, I as-
signed disability-related readings; now, teaching disability
studies, I am involving my students directly with disabled
individuals to show that having a disability is not a trag-
edy.
Jessica Goodys work has been published in Readers Di-
gest, The Maine Review, and The Seventh Wave. She has
also contributed to a Chicken Soup for the Soul anthology.
She has won two poetry contests (first place in Magnets and
Ladders, Fall/Winter 2016, and second place in Readers
Digest). Goody has cerebral palsy and says she writes in
order to make myself heard and understood, to share my
sense of self and the world around me.
Mary Doyle Johnston is a retired nurse. She has two forms
of artistic expressionwriting poetry and drawing. She
struggles with chronic depression and has experienced deep
feelings of isolation. Johnston says, I am an individual
who is independent but understands the danger in being
isolated from others. I want to protect my individuality but
also long to be connected to other people. I frequently find
it difficult to balance these two needs.
108
Katie Rendon Kahn describes herself as an entrepreneur.
Her writing has appeared in Topology Magazine and Linden
Avenue Literary Journal, both in 2016. She has also con-
tributed to Soul Vomit I and II (poetry anthologies raising
awareness about domestic violence). Her most recent work,
a poetry chapbook, Smoke Signals, will be published in
2017. Kahn, her mother, and her son all struggle with bipo-
lar disorder.
Carol Keegan, Ph.D., is a forty-four-year stroke survivor
with motor disabilities who launched her retirement with
an emphasis on volunteer work supporting stroke patients.
In 2011, she completed a thirty-five-year career as a social
science and marketing researcher for a variety of national
nonprofits. In 2012, she developed an expressive writing
workshop, Life After Stroke the online version guided
survivors through six weeks of brief writing assignments
designed to support their understanding of the ways in
which stroke had transformed their lives.
June Capossela Kempf is a writer whose articles have ap-
peared in a variety of news outlets including Huntington
Review (May 2015) and Newsday (September 2015). Her
memoir titled Yo God! Jays Story, based on her sons life
and his relationship with his service dog, was published in
June, 2014 by Keith Publishers. Kempf won a second place
award from Angel Animal Network for a longer version
of the essay that appears here. Jay passed away in 1996.
Kempf shares, . . . despite the 1990 passage of the Ameri-
cans with Disabilities Act, I am still shocked to discover the
misunderstanding, mistreatment, and the public mockery of
our disabled community today. . . .
Grace Lapointe graduated from Stonehill College in 2011
with a bachelor of arts in English. She works for a nonprofit
organization in the greater Boston area. Her work (fiction
and essays) has appeared in Mobius: The Journal of Social
Change (March 2016), Why I Write, Vol. 5, published by
Grub Street (October 2016), and The Deaf Poets Society,
an online journal (December 2016). Lapointe has cerebral
palsy and says, My disability has always been integral to
my identity and my work. Ive always been conscious of
being perceived as different and defying some peoples ex-
pectations.
Tammy Littlejohn is a writer whose articles have been
published in Teachers of Vision, Farm and Ranch Living,
and Kansas City Voices. She and her son Thomas are writ-
ing childrens books together and hope to have one self-
published soon.
Allison M. Loose is a 2016 graduate of Pennsylvania State
University with bachelor degrees in both English and eco-
nomics. She received the Henry W. Sams Award for Excel-
lence in Literary Criticism. Loose says writing is the best
form of medicine, both to consume and distribute. She de-
scribes herself as having insatiable wanderlust and says,
I am still struggling to figure out my path in life.
Sean J. Mahoney helped coordinate and found the Dis-
ability Literature Consortium (dislitconsortium.wordpress.
com). In addition to his work in geophysics, he also writes
poetry and fiction. His work has appeared in Tethered by
Letters (Summer 2015), Open Thought Vortex Magazine
(September 2016), Nine Mile Magazine (Fall 2016), and
Antitheses Journal (Volume 26, 2016). Mahoney has MS,
which he says is another tool to work with and through.
He also reflects, Writing is like breathing, in that I have no
choice in the matter.
Tristan Tavis Marajh graduated from the University of
Toronto in 2007, earning a bachelor of arts with honors
and also received a graduate certificate from The Humber
School for Writers, in 2009. His articles and fiction have
appeared in Good News Toronto (October 2011), The Nash-
waak Review (December 2015), and Ricepaper Magazine
(August 2016). Marajh struggles with depression and OCD.
For him, writing is life and freedom.
Michael Mark is a hospice volunteer. His poems have been
published in Rattle, Bellevue Literary Review, Tahoma Re-
view and Cimarron Review (2016). He has received three
Pushcart Prize nominations.
Randy Martin graduated from Northwest Community
College in 2004. He works as a carpenter, but also writes
poetry. His poetry was published in MUSE Literary Journal
in 2015. He states that disability is often not given the care
and thought as to how it actually impacts [individuals]. He
believes most people feel, Thank God that is not me . . .
but what if it was?
William H. McCann, Jr. grew up with severe learning dis-
abilities which lead to his being sent from his home in Ken-
tucky to a residential school in Wisconsin. He is a poet and
playwright. He teaches developmental English and reading
courses at Bluegrass Community and Technical College in
Lexington, Kentucky.
Mary McGinnis is a licensed counselor and a poet. She has
three full-length poetry collections, Listening for Cactus
(1996), October Again (2008), and See with Your Whole
Body (2016). She also contributed to the anthologies Fixed
and Free and Lummox 3 (2015). She was the featured poet
in Malpais Review (2015). McGinnis has been blind since
birth and says, It is part of my daily experience, so is in-
herent in all I write . . . .
Erick Mertz is a writer and social worker. His articles
and poetry have appeared in Spectrum Magazine (2015),
Baldhip Magazine (2015), and Fireweed: Poetry of Western
Oregon (1998). He has worked with people who have dis-
abilities since high school, which lead him to a career as
a case manager. As a result of those experiences, he finds
connections with and inspiration from his clients.
Phyllis H. Moore is a retired social worker, who with her
husband, opened a bed and breakfast in a small Texas com-
munity. That experience became the catalyst for much of
her writing. Her work has appeared in Fiction Southeast
and Yellow Chair Review. She is also the author of five nov-
els: the Sabine Trilogy and two stand-alone novels, Tangled,
a Southern Gothic Yarn and Opals Story. Her nonfiction
book is titled, Retirement, Now What?
Sandy Palmer studied graphic design at The University of
Akron and is a freelance artist who works with a variety of
media. She contributes to Kaleidoscope as the writer of vi-
sual artist profiles, having joined the staff as art coordinator
in 2002. Palmer is the full-time graphic design specialist at
United Disability Services.
Judie Rae has had a long and varied career as a writer. She
published three teenage romances and also wrote a Nancy
Drew Mystery, The Clue in the Camera. Her nonfiction es-
says were published in Sacramento Bee, Sierra Heritage,
Tahoe Quarterly, and Outside California. She also wrote a
college thematic reader, Rites of Passage. She then turned
to poetry and was published in such journals as Nimrod,
Wisconsin Review, Canary (online literary magazine), and
Mudfish. Her chapbook, The Weight of Roses, was published
by Finishing Line Press (2014). She taught college-level
English for twenty-seven years.
Melanie Reitzel is a registered nurse and a certified lacta-
tion consultant. She earned a master of fine arts from San
Francisco State in 2012. She had a prose poetry series in
The North American Review (September/October 2004)
which was nominated for a Pushcart Prize. Another prose
poem series was published in Tulane Review (Spring 2011)
and an article appeared in ZYZZYVA (Spring 2010). Reitzel
had polio in pre-vaccine 1950. She says, I would not be as
realistic and honest without the challenge of my disability.
109
Barbara Ridley is a retired nurse practitioner with thirty-
five years of experience as a rehabilitation nurse working
with individuals with neurological disabilities. She is also a
writer of fiction and creative nonfiction/memoir. Her work
has appeared in The Copperfield Review (Vol.15, Sum-
mer 2016), Ars Medica (Vol. 11, 2015), Still Crazy (Vol.
VIII, July 2015) and The Writers Workshop Review (Vol.
9, November 2014). Her awards include first place in the
Soul-Making Keats Literary Competition (2015) and the
Corona Worldwide Short Story contest (2014). She was
born in England, but has lived in Northern California for
many years.
Ron Riekki, Ph.D., will receive a master of arts from
Graduate Theological Union in Berkley, California in 2017.
Over the years, his writing has focused on life and the lit-
erature of Michigans Upper Peninsula. He has received
prestigious writing awards including: Independent Publisher
Book Award (2016), Shenandoah Fiction Prize (2016), and
Michigan Notable Book (2014). I dont go out of my way
to write about disability; its such a quotidian part of life
that it naturally comes up in my writing frequently . . . one
of the main characters in my novel U.P. has cerebral palsy.
Casey Robb is a retired civil engineer and a former physi-
cal therapist. Her fiction has appeared in The Literary Nest
(April 2016), Foliate Oak Literary Magazine (October
2015), and Menda City Review (December 2014). Origi-
nally from Texas, she now lives in Northern California and
says, my love of adventure has taken me on trips around
the world, mostly by myself. She has two daughters, one
adopted from overseas.
Nancy Scott, from New Jersey, is a poet whose work has
been inspired and informed by her eighteen years as a so-
cial worker. We share two of her poems Paul and Cheryl
and The Sixth Child in this issue. Her poetry collections
include Ah. Men (Aldrich Press, 2016), Running Down Bro-
ken Cement (Main Street Rag, 2014), On Location (March
Street Press, 2011), and One Stands Guard, One Sleeps
(Plain View Press, 2009). Scott is an adoptive parent of
three and has opened her home to many foster children.
Nancy Scott, of Pennsylvania, writes poetry, essays, and
creative nonfiction. She contributed to two anthologies,
Staring Back (1997) and Cup of Comfort (2002 and 2003)
as well as the journal, Disabilities Studies Quarterly (2005
and 2015). Scott received the International Onkya Award
(World Braille Essay Contest) in 2009. She has collaborated
with artist Maryann Riker to create two chapbooks, The Na-
ture of Beyond (2010) and The Almost Abecedarian (2015).
We share her poem Dress Up in this issue. Blindness
influences my experience, and I find the humor and struggle
of life in my work.
110
John Smith is a retired teacher and poet. His work has ap-
peared in Canary, a journal focused on the environmental
crisis (October 2016), and Spillway (Summer 2015). His
book-length poetry collection, Even That Indigo, was pub-
lished by Hippocket Press in 2012. Smith says he writes
because Its a way into and out of myself. Its my alchemy,
my prayer, a craft I can work at all my life. I believe cre-
ativity is essential to our health.
Lois Soffer is a psychologist and mother of two sons with
significant disabilities. She is currently working on a mem-
oir about one of her sons, with the working title Dancing
With Parker. There is something essentially satisfying
about telling my stories in ways that are illuminating, that
others will connect with and will perhaps find some mea-
sure of hope.
Blair G. Sweeney is a communications manager. In 2011,
her personal essay appeared on Epic Parenting, an online
resource site. She has had poems published in the Babylon
Review (June 1998), The Brooklyn Review (May 1992),
and The Olivetree Review (April 1988). Sweeneys son has
epilepsy and she says, Im driven to write about issues of
human rights after seeing how children with disabilities still
get sidelined at school and in society.
Mary Ellen Talley is a recently retired speech and language
pathologist whose experience working with children in the
Seattle, Washington public schools has inspired much of her
poetry. Her work has been published in The Unprecedented
Review (September 2016, online). She has contributed to
three anthologies, All We Can Hold: Poems of Mother-
hood (Sage Hill Press 2016), The Doll Collection (Terrapin
Books 2016), and Raising Lilly Ledbetter: Women Poets
Occupy the Workspace (Lost Horse Press 2015). Talley
says, I often translate my experiences, observations, and
perceptions into poetry.
Sarena Tien is a Chinese-American writer, feminist and
Francophile, working temporarily as an English teaching
assistant in a small city in northern France. She earned her
bachelor of arts from Randolph-Macon College in 2016.
Her essays have appeared in several online venues includ-
ing The Feminist Wire (April and September 2016), Bustle
(September 2016), and As Us (December 2015, online and
print).
Gail Willmott has been a staff member with Kaleidoscope
since 1982 and became editor-in-chief in July, 2003. She
received both her bachelor and master degrees from the
University of Illinois. Despite the occasional chaos that
ensues, this is a career I have loved for nearly thirty-five
yearsgetting to know our contributors as well as working
with very accomplished and supportive colleagues.
Tammy Ruggles, Birth, digital photograph, 2013, Tammy Ruggles, Awaken, digital photograph,
2998 x 5120 px 2015, 258 x 4908 px