by Colin Bay
My sister Pamela used to have a Partridge Family album
with absurdly sappy lyrics and titles like “I Think I
Love You” and “Stop and Turn Around, Somebody
Wants to Love You .” Some afternoons when my
mom was gone, Pam would put the record on, stand
in front of the living room mirror and look into her own eyes while
solemnly mouthing the words of the songs. That was satisfying to
her, and though I was embarrassed to watch her, I understood: she
was in the fourth grade and there wasn’t much else to feel. I believe
my empathy then was cousin to the sensation I had years later, in
front of the television, when I felt a communion with humanity
grieving for the man in the freezing Potomac who passed a life
preserver to other struggling passengers, then went under the water.
Personal grief, too, feels fulfilling, but only if it comes in the
right form. Grief in neat patterns provides a sort of satisfaction,
because when you suffer cleanly and simply, you confirm your
humanity. The easy patterns are brief and have definite climaxes:
the sight of a car folded around a concrete pillar, or an O. Henry
twist at the end of a real-life plot (“And they never saw each other
again” ), or a doctor saying, “She’s got six months.”
While I was studying in London last year, I got a call from my
mom. She made conversation for a minute, then took a breath and
said, “I hope I can get through this. We found a bump on
Elizabeth’s neck and took her to the doctor, and he sounds
worried . He wants to do a biopsy on it Monday , so we ‘re all going
to fast on Sunday . We would like you to join us. We ‘re scared. ”
I hung up the phone, felt my stomach , stretched my arms out,
blinked, and shook my head a little. I wasn’ t crying. I walked down
through the dining room, but no one was there to ask me why I
looked sad, so I went to the back bedroom and sat on a chair by
the table near the window without looking out. I don’t remember
if it was gray outside to make the scene right, but no matter-it
usually was. Finally, when I let my mind wander to other things
for a moment, the tears got started. It hurt to cry, like coughing
with a sore throat, and my eyes shut themselves so tight they ached;
then it got easier, and I cried onto the wooden table for a few
minutes, pulling my finger through the small pools to bleed them
together. Eventually I stood up, but every hour or two during the
day I would suddenly remember the news and feel guilty about
having neglected for a while to think of Elizabeth.
That evening I lay in bed and tried to cry, as I had when
I was nine, the day we took our dog Angus to the pound . I looked
at the slats of the upper bunk and reminded myself that this was
a tragedy . No good. Then I pictured Elizabeth lying in a hospital
bed much bigger than she was, looking pale and brave, or maybe
noble . Still no good. But when I tried to imagine no Elizabeth
anywhere, I cried again. I wrote in all my letters, as an aside
to be taken for granted, that I had cried . Weeks later, when Dad
told me that Elizabeth read books in the library while the rest
of her first grade class went out for recess, and again when I
found out that she has been sterile from birth, the tears came
without any prodding.
In the beginning, though, before the diagnosis, I imagined
either an efficient, orderly death in a few months or a surprising
cure . I imagined a cathartic outpouring of grief or joy. I would weep
again, unembarrassed, and call my friends on the telephone to give
them the news, and it would be real emotion . It would be
satisfying. But when I got back home to Houston a week and a half
after the call, I was deflated to find there was still no diagnosis.
Why, I thought, couldn’t they identify a simple tumor? The pattern
of events was all wrong; being shortchanged of a catharsis made me
tense . Still, tension was something.
But my preoccupation with my own reactions doesn’t mean I
don’t care about Elizabeth. Elizabeth is the best of the kids, and
I told people so before there was any tragedy. She doesn’t have the
neuroses and selfishness that the other eight of us had even at five .
She has none of the self-consciousness that taints our curiosity and
humor. She talks to strangers, remembers things that I have
forgotten for months, and says everything with impeccable grammar.
She is not the moral of an inspiring story; she is as real, and as hard
to capture, as my grief.
I remember using my Christmas camera to take a picture
of Elizabeth at one-and-a-half peeking around the corner of the
kitchen door and smiling: not the smile when she would wrinkle
up her nose and breathe loudly so she could hear herself, and
not the one she got when I tickled her, but an all-out grin
like the one she would get when I played hide-and-seek behind a
book and suddenly showed my face. That is still the best picture
I’ve ever taken.
I always boasted that Elizabeth was a genius because every week
there was something clever she had done that I could tell my
girlfriend and her roommates. At two, sitting in the front seat, she
grabbed the steering wheel and said, “Daddy, you need to let me
sit here because I’m going to drive to Utah to get Colin.” That’s
what makes her a genius-she never says what’s expected . Once
when Elizabeth was four, Mitchell and Curtis caught a grasshopper
and put it in a canning jar with a lid that made a snapping sound
every time the grasshopper bounced against it, sending Elizabeth
into the air in pretended fright . After I asked why she acted scared
when / was listening to the same noise and wasn’t scared, she looked
blank for a few seconds, then said triumphantly , “Because you’ re
not a little girl yet.”
I still tell anecdotes, but now all her clevernesses are medical.
Early in the summer, before the diagnosis, Dad and I took her in
for more blood tests and x-rays. In the car just before we got to the
clinic, she asked me if I had ever had a blood test. I said yes, I had
had one or two. She didn’t say anything more about it until we
were inside the doctor’s office and an attendant was bringing over
the syringe and sample vial. Then she said brightly, “I know-Colin
can take the blood test for me. He said he ‘s only had one, and I’ve
already had lots.”
And after the doctors finally settled on a diagnosis, Mom and
Dad took her East to a specialist doing research on her disease at
the National Institutes of Health . When he took Elizabeth in front
of a roomful of doctors to ask how the growth on her back and neck
made her feel, she launched into a long spiel about the plane ride
and her friend Albany from next door and the Cabbage Patch Kids
shoes somebody gave her while she was in the hospital and the new
student aide she was going to have in first grade, and everyone
listened. None of the rest of the kids in the family is like her.
It isn’t really a disease, though, they told us; it’s a condition:
fibro-displasia ossificans progressiva. A genetic defect that doesn’t
become active until at least five-her age-tells bone to form
among the muscle tissues of the back, in the beginning, and the
resulting scar tissue immobilizes the muscles as it forms. Eventually
she won’t be able to move anything, and in ten years or so it will
get her heart.
It’s already moving fast. Right now she holds her head cocked
to the side as if expecting an answer, and she nods with her whole
body. When we take her swimming she wears inflatable wings of
orange plastic to hold her up while she plays in the pool, bobbing
out of the water like a smiling and sputtering hunchbacked angel.
Her wet hair stays in her eyes because her arms can’t move that far
anymore . And the experimental medication she ‘s on-a formality ,
the researcher admits-dries her lips and arms until they ‘re layered
with sores.
But from the beginning the family started writing letters more
often :
Dad , from Houston: Pamela, we’re so glad Colin is back at
home. We need all the strength we can get.
Andrew, from South Africa: I haven’t been able to think of
anything else since I found out. Even while knocking on doors I
think of her. But I know the Lord is in charge . I know why
Elizabeth has been afflicted this way and that it will be for the best.
Pam, from Provo : Andy, that’s bullshit. I can’t believe you said
that.
Mom, to Ian: I guess Pam wrote a very frank letter to Andrew
that he told us about this week. He said that wasn’t what he meant.
In the meantime , the dressings on the biopsy wounds had to
be changed every day . The skin was red and irritated from the tape
being stuck on and torn off in the same places, so Elizabeth usually
cried and sometimes screamed while the dressings were being
changed-long screams when the wound had bled and stuck to the
gauze . Every evening at 7: 30, just before bedtime, it was time to
change them. An hour or so before that, Elizabeth would start
saying hopeful things like, “I don’t think it’s been bleeding to-
day,” “I don ‘t want to change my dressings now,” and once,
conspiratorially , ” Daddy, if you don’t change my dressings today
I won’t tell Dr.Jackson.” As the time got closer she would whimper
a little and say that she just wanted to go to bed.
Dad would gather into the kitchen as many of us as he could
find while he changed the dressings, to diffuse, I think, his pain
at hurting her. He would tell her he was going to be gentle; she
would say that even when he did it gently it hurt. She is an
articulate child. Elizabeth would sit on the wooden stool while Mom
stood crying, holding Elizabeth’s arm until Dad was through. After
the one on her neck was done, Elizabeth always said, “Please,
Daddy, can I go to bed now? I don’t want to do the other one.
I’ 11 go straight to bed if you want.” She screamed more with the
second one. To keep it from pulling her skin, Dad would hold a
finger under the tape as he tore each strip off. ”Just two more strips
to go, ” he would say; and she would say through sobs, ”But
Daddy, it’s hurting me.” Then while Elizabeth’s crying slowed
down, he would touch on some Neosporin, take a new gauze pad
from the wicker basket that held her supplies, and cut off four strips
of tape to stick across the pad in a simple lattice. It took the
incisions four weeks to heal.
But the doctors had ordered the biopsies before they knew what
Elizabeth’s condition was. Any trauma-even something much
milder than biopsies-makes the areas of calcification grow faster.
That’s why her condition has progressed so quickly . It also means
there won’t be operations on her turned-in toes, or on her tonsils,
or on the overbite that makes her took like a duckling, and there
won’t be any roughhousing with her in the living room.
There won’t be many big moments of grief and triumph,
either: maybe the end of public school, the wheelchair, the days
when heart failure will be obviously near. But those are months or
years away; things are easier and harder now because they’re gradual
and because I’m not living at home. There is a routine of letters,
visits at Christmas to be briefly shocked at her changes, and every
few months another tiny, bitter milestone-she can’t make the
spoon reach her mouth unless it’s sideways, she needs an extra pill
to go to sleep, her other hip hurts now, too.
A few weeks ago I heard that the bone in her left knee is
starting to fuse, but thinking about all of this now doesn’t make
me cry anymore, and it’s been a few months since I last got any
tears thinking of Elizabeth. I can’t feel things all the time. People
get used to almost anything.