My parents said that as an infant I was an active,
good baby who slept well and delighted all the relatives. When I was seven
months old, they said that I couldn't pull myself into a sitting position
and could not maintain my head and neck balance the way other children
did. I never crawled. I was different, but no one knew what was "wrong"
with me. Soon after began years of doctors, medicines and expensive treatments
and there was never enough money to pay for them.
As far back as I remember there were many trips
to the doctors. They were dreadful, and they were all so far away. I wondered
why the doctors didn't want to live near us. I remember the long rides
in the car; sitting between my parents. I couldn't see anything but the
tops of trees, telephone poles and every once in a while a bird or plane
that would fly over. My parents were tense and quiet. The rides were mostly
boring, but I could never seem to drift off to sleep. The pit of my stomach
ached too much.
All the doctors had green rooms. I don't know whether
it was the color-of-the-year; cheap World War II surplus paint, or whatever;
but I remember green----lots of it. It was a sickening grayish- green.
I have vivid memories of different colored examination tables-green, maroon,
brown---- all of them padded with plastic, but the tables still felt hard.
Many of them were covered with paper; which made crinkly noises and caused
me to slip very easily. One time when I started to slip I couldn't stop
myself. My mother grabbed me just in time.
The exams themselves felt dangerous. I was always
naked and cold. They probed and whispered. Being high up on a table, four
feet off the ground, felt scary. I was always afraid of falling, and I
would exhaust myself at each appointment trying to hold my balance. Since
I had so little strength, I held myself up on the table by balancing. I
would prop my self up on my elbow or lean my shoulder against my mother.
Move me too fast and I'd fall. I couldn't stay in one position too long
without my muscles fatiguing.
I was asked to do all the kinds of things I couldn't
do-lift my head, move my arm, move my foot - and of course I failed, over
and over again. I felt bad that I couldn't do what was being asked of me.
After all, who would ask a child to do something they couldn't do? I thought
I should be able to do normal things like other children, since I looked
and felt like them. Nobody seemed to care that at ten months I was able
to talk. Perhaps because I could speak, or because these visits were so
tortuous, I have clear memories of them.
The doctors seemed crazy, putting me through tortures
like banging me with little hammers, sticking me with safety pins to see
if I could feel, and taking parts of me for lab tests. So when I was a
year old and all these different doctors, nurses and people in white jackets
couldn't find anything wrong, I figured I had passed the test and nothing
was wrong with me. I just couldn't walk.
. . . . . . . . . .
When I was two, a physical therapist named Miss Midwood came to the
house twice a week to show my mother how to do therapy with me. I liked
her. I didn't like the exercises. I would have to lie on the kitchen table
and be stretched, and once again, I was told to do all kinds of things
I couldn't do. It was painful and sometimes I cried. She gave me a book
depicting God as a warm, fatherly person. It made me feel better somehow.
She also tried to make me feel better by telling me that if I couldn't
do something then, that I might be able to do it later. She was the only
person that ever said that to me. It felt good to hear that, but I didn't
believe her. I just smiled.
I felt really uncomfortable sitting at kitchen tables.
How could I eat at the same table Where somebody exercised me? There were
other tortures that made me uncomfortable in that kitchen.
There was an exercise I had to do in the two kitchen
sinks. One sink was filled with very hot water and the other with cold.
My mother would sit me on the edge between the two and alternate putting
my feet in each sink. First, she plunged them into the hot water for a
couple of minutes, then into the cold water; back and forth repeatedly.
It was supposed to improve my circulation, but it felt like hell. It shocked
my whole body. My mother said it wasn't painful, and then got mad at me
when I cried.
One day, my mother sat me at my little table in
the living room to play. My feet dangled in toe- down position.
"Keep your feet up on this book. The doctor said
not to let your feet hang down, otherwise we won't be able to get rid of
those contractions," she directed as she bent my knees up and placed my
feet flat on a big fat yellow phone book.
"It hurts!"
"It doesn't hurt that much. Besides, you need to
get your feet straightened out or you'll never walk."
She gave me a hug and went in the kitchen to do
dishes. I concentrated hard and struggled until I slid my feet off the
telephone book.
The doorbell rang. It was the insurance man. He
came in to collect payments from my mother; saw me at my table, and said,
Oh! Hi, how are you? Are you being a good girl today?"
I nodded yes.
My mother said, "No, she's not. Look. at her feet.
They're on the floor again. I keep putting her feet on books so they won't
dangle. We don't want her to have contractions. She's supposed to keep
her feet up on that thing."
I looked at him a little sheepishly.
He said, "You be a good girl. You should keep your
feet up on the book like your mother tells you, otherwise how are you gonna
walk?"
I gave him a dirty look, thinking to myself, "Who's
gonna walk?"
He said, "You know someday you might walk, and then
if your feet are bent, you won't be able to do anything about it."
I looked him dead in the eye and said, "I'll be
a ballerina and I'll walk on my toes."
. . . . . . . .
The Christmas I was three, I got a big present. Mommy
and Daddy helped me. open it. I couldn't unwrap presents by myself, though
I would try by biting and tearing the ribbons with my teeth. It was a rocking
horse from Santa. Even Santa wanted me to be normal. For months I tried
so hard to keep my balance on that dumb horse. By spring, I wanted to throw
it out our second-story window, only I didn't want to seem ungrateful.
They were trying to help me use a toy that any of my cousins or friends
would have loved. We kept it around for years. Every once in a while I
would sit on it, but I was never able to ride it.
. . . . . . . . .
Fantasy was my way of protecting myself from the
pain of the truth. It hurt when my mother looked at me with pain and grief
in her eyes. I could sense that she felt my condition was her fault. I
overheard her saying on the phone to a friend that she had asked a priest
why this was happening to her child. He told her it was her fault or my
father's fault because they must have sinned. I knew it wasn't my fault,
but I wished it was. If it had been my fault, she would not have
had to blame herself. I felt so often that I had failed her.
Each time a new exercise was presented to her by
the doctor-gods, she would try it with me over and over. When I couldn't
move my foot or my arm the way they told her to make me, I failed her again.
. . . . . . . . .
One day when I was almost four, Aunt Ro invited a
few of her friends, my mom and Aunt Kay for coffee. Most of the women had
toddlers. While. the moms chatted and drank coffee, the kids played wildly
in an adjoining room. My mom held me on her lap. She was afraid to leave
me alone in the room with the other kids for fear I might get knocked over;
hit with a toy or hurt in the roughhousing. My arms weren't strong enough
to defend myself, and my back and neck muscles were too weak to maintain
a sitting position against much resistance.
One of the women pressed my mom, "Why don't you
put her down and let her run around? Don't be so overprotective."
I could feel tears welling up in me. I couldn't
tell whether they were my tears, or my mother's. I was sitting on her lap;
our bodies pressed together. Her breathing had changed and her muscles
had tightened. My mom had assumed that my aunts had told their friends
that I had a disability. She was devastated at having to explain about
me--the unexplainable. When she told the women that I couldn't walk, it
was like she had expelled a dark cloud over the room. I could taste their
pity seeping into my cookie, which now had such a bitter taste that it
stuck in my throat.