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Seth
Abramson
Martin
Seay
Jim
Simmerman
Bob
Hicok
Alice
Friman
Albert
Goldbarth
G.
K. Wuori
S.
Gruen
John
Brehm
David
Kirby
Lesley
Quinn
Christine
Garren
Natasha
Sajé
Roy
Jacobstein
Rebecca
McClanahan

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Lesley Quinn
100 Percent
People at the office ask innocently enough. Say you are standing in
the lobby waiting for an elevator. You are assembled there, a bunch
of you, after the finance committee or whatever, in your uncomfortable
shoes, budget spreadsheets stuffed
inside your zippered leather portfolios, and you start to consider how
best to cut your departments operating expenses by the required
5 percent, and you stare straight ahead waiting for the ding
and the doors to open. To pass the time the person next to you eventually
turns to ask politely, So. Hows the family? and you
immediately feel that quickening tightness around your lungsthat
gentle, uncomfortable squeezeand you think, Here we go.
You take a breath, a deeper breath than is normal
for this elevator lobby. You smile. You nod your head, perhaps a little
too vigorously. All is well in my world, is what you hope to
convey. But what you think is Please can we not do the parenting
check-in thing?
And yet as you push the elevators Up button
(which is already lit), you turn toward your colleague and immediately
launch into an interrogation about his family, his offspring, everything
in the world you can think to ask. You remember he has a daughter, and
you zero in on her. She graduates this year, right? How were her SAT
scores? To which colleges did she apply? Which one is her first choice?
What percentage of applicants is accepted there, does he know? Is your
colleague ready to witness the final upward stretching of her wings?
People love being interviewed, which is what
makes this strategy so effective. But occasionally it fails. Occasionally,
someone will manage to parry with one quick question while you are pausing
for oxygen.
Today, your colleague asks, Hows
your daughter? You feel a wave of weariness.
But you nod quickly. You smile brightly. You say your daughters
name. You say shes eighteen. You glance above the double doors
to see where the elevator is now, how many more floors to go.
Eighteen, already? Wow. He will
probably ask next where she goes to school.
He does.
You push the elevators Up button again
and make yourself answer matter-of-factly, cheerfully, without hesitation,
A small high school for kids with neurocognitive disorders.
Then you step back.
You wait.
Oftenmaybe 60 percent of the timethe
response to this is, Oh. Because
neurocognitive sounds so messy and not fixable, and it tends
to thwart the natural
momentum and rhythm of congenial discourse. For people to inquire further,
something special is required, something like a straightyet supplespine.
The remaining 40 percent, those with straight, supple spines, might
ask what neurocognitive means. Is that some kind of learning
disability, like dyslexia?
Your colleague today surprises you; perhaps,
after all, he is a superior supple-spine person. At this point you elaborate
(briefly, very briefly), that your daughters school is for kids
with one of several brain disorders on the autism spectrum. But there
is that word autism, and it sounds even scarier than neurocognitive,
and often after you use it, you can move directly on to weekend plans
and the weather.
Ah, your colleague is nodding heartily
now. He checks the status of the elevator. He tries to decide if that
Up button needs further pressing. So, he asks finally, any
plans for the weekend?
But a small percentagemaybe 10 percentwont
be content to stop there. These are the people who will ask how your
daughter came to have this disorder. These are the people into whose
faces you will look, and if you detect a certain quiet in their eyes,
you will consider suspending your conversational acrobatics and saying,
again without diving into detail, that your daughter had a rough start.
You may say (very lightly, very conversationally) that she arrived twelve
weeks early, one of those micro-preemies who weighed not quite two pounds.
But is she okay now? the optimists
always want to know. Except for the learning disability?
How they hope this will be one of those triumph-over-all-odds,
happy-ending stories! Here you have another turning point. You will
bob your head around in what is mostly a yes, with a tiny suggestion
of not exactly, because by now you are unwilling to minimize,
unwilling to construct the simplified, satisfying conclusion. You could,
and you dont know why, but now you wont. Instead, you reward
their quiet eyes with that little head-bobbing triangle of truth. Not
exactly.
You have no need to elaborate. If you can wrap
it up comfortably now, and usually you can, you will say something wry
and inclusive, something to chase away the small cloud of misfortune,
like, Parenting . . . always so full of surprises.
If yet more is required, which is rare, you
will say to the remaining 2 percent,
those few with supple spines and quiet eyes and something morea
combination of gravitas and grace, maybethat your daughter has
health issues still, but she is also an incredibly brave and wonderful
kid. You smile reassuringly. You thank them for asking. By then, surely,
your elevator will have arrived.
But what about the story known by only a tiny
percentagea very privileged few? When your daughter was born you
could hold her entire body in the palm of one hand.
Her head was the size of a small nectarine.
She was five months old before you could bring
her home from the hospital.
She wears hearing aids.
She adores musicals.
She is a startling mimic.
She has epilepsy and asthma.
She has long, beautiful blonde hair. She is
always asking to dye it black.
She used to have a tumor the size of a large
grape behind one eyeball that
made it look, until she was about four, like that eye was growing out
of her cheek.
The tumor, before it was removed, caused the bones on one side of her
face to grow differently so her face isand will always beasymmetrical,
like a cubist painting.
Her teeth dont line up, so it is exhausting
for her to chew. To fix this problem her jaw must be taken apart and
reassembled.
She is heart-breakingly earnest.
Her laugh, which is the funniest laugh you have
ever heard in your life, is famous in your community. Once, at the movies,
she burst into her staccato hysterics, and, you learned later, friends
sitting elsewhere in the dark theater turned to each other and whispered
her name.
Her eyes are a warm brown.
Her skin is very pale.
There are large blue veins running up the inside
of her left arm, fanning out from her shoulder across her small, bony
chest.
Her hands are tiny, but her fingers are very
long. She has nice fingernails when she doesnt chew her cuticles.
The simplest math is impossible for her brain
to grasp. It takes about thirty seconds, with her eyes squeezed closed
and her lips moving silently and her lovely
fingers outstretched, to figure twenty minus ten.
She has breasts.
She is indifferent to most food (she is four-foot-nine
and weighs seventy-eight pounds; at eighteen, she has reached her adult
size). Oddly, she adores clams and
escargot.
For her, impassive faces and figurative language
and certain tones of voice are
indecipherable. Today a boy at school said I looked hot. Was that
flirting or was that about temperature? Or, Right after
Mr. Enholm yells Quiet! in math class, he smiles
at us. Is he angry? Or is he joking? Or is he joking and angry?
She may not know how others are feeling, but
she always knows precisely how she is feeling, and she usually
knows precisely why. Please dont give me unpleasant advice
before school, Mom. It makes me feel mixed up and the opposite of cheerful
and it ruins my whole day.
She has recently been experimenting with ferocity.
Excuse me, Dad! She leans forward at the dinner table, glaring,
pointing her forefinger into his face.Excuse me. You interrupted
me. Which was inappropriate because I am the one who is talking right
now. Not you. It is hard not to find this funny.
She takes enormous pleasure in recounting, repeatedly
and in word-perfect dialogue, long scenes from movies. She is desperate
to relive these scenes out loud, and she is often wild-eyed with the
inability to keep herself from sharing them . . . again . . . and again.
It seems impossible for her to remember, or it seems not to matter,
that everyone finds this tedious.
Any mention of the word annoying in relation
to her behavior triggers in her a deep and frustrated despair.
Because she can be someone else for an entire
day, she cant wait for Halloween.
She begins planning her next costume in early November, and every year
decides she will dress up for only one more year. She said this at fifteen
. . . sixteen . . . seventeen. After next year, she says, she
will be too old and will stop for sure.
She types so fast her fingers are a blur on
the keyboard, and she aches for a boyfriend and worries that no one
will ever really love her that way, and she lies badly and infrequently,
and once she sees a word on the page, she will never, ever misspell
it, and she loves to snuggle, and she loves spending time alone with
her
laptop in her room (which she keeps perfectly clean and orderly and
just so), and
she loves Friday nights when she is free from school and free from chores
and free
from the hard reality of being her out in the world, and she
devotes herself, endlessly, to a large and ever-changing cast of instant-message,
role-playing, virtual friends whom she adores, and she wishes she didnt
have to buy her shoes from the kids department, and she loves
listening to movie soundtracks over and over again, and she loves dogs,
and she is, in her heroic little body, a huge presence in your hurting
and grateful heart, and for 100 percent of her eighteen years, she has
been your biggest and most complicated blessing.
These are not things you can say while you wait
for an elevator.
LESLEY QUINN has not one single impressive academic credential to advance,
except hat she was once the proud recipient of the Montera Junior High
School English Student of the Year Award. But she also published a travel
essay in the New York Times, an accomplishment she artfully manages
to slip into casual conversation with new acquaintances and appliance
repair persons. She lives with her husband and daughter in Berkeley,
California.
100 Percent appears in our Spring
2006 issue.
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