Those afternoons I did not take the bus and chose
to walk home from high school, I would find this boy, maybe ten or eleven
years old, sitting on the stoop of the semidetached house where I imagined
he lived. Every time I passed, this boy asked: "Why are your legs the way
they are?" And I would answer, "I was born that way," never stopping or
slowing down.
The next time I walked down that street, there this
boy was, sitting on the stoop, and again he asked me his same question.
And I gave him my same answer. That was the entirety of our exchange.
Every time I walked down Bay Forty-third Street
in Brooklyn shortly after three in the afternoon, that boy and that question
would be waiting for me. Never did I think of answering him in any other
way. Or not to answer him at all. Nor did I ever stop to talk to him. And
never once did it occur to me that I could walk~down another street, not
see this boy, and evade his question.
"It could have been worse," my mother always said,
imparting her belief that it would have been worse if I had been born mentally
retarded, to use the word used at that time.
Or, "He could have been a girl," she would say,
explaining that if I were a girl I would have had to wear a skirt or a
dress and my legs could not be covered up by the pants she conscientiously
cut and hemmed, creating ways for them to fit over my casts and pins when
I was recovering from surgery, or over the braces I sometimes wore but
do not remember wearing.
I have never told my parents how I feel when people
gawk at me while I walk down the street. I don't even have to walk for
people to stare.
"A freak, a freak, my daughter gave birth to a freak,"
my mother's mother yelled, running into the hospital just after I was born.
Hearing this, my father fainted. The hospital staff thought he had a heart
attack. By the time he revived, my mother, who had gone toxic while giving
birth to me, was doing fine.
I try to imagine what my parents said when first
seeing each other after I was born. I wonder if they even remember.
I was born, four pounds, five ounces, on September
22, 1960, the second son of Donald and Joan Fries, a lower-middle-class
Jewish couple in Brooklyn. My father, then a kosher butcher, had just turned
twenty-eight; my mother, then a housewife, was twenty-four. They had been
married almost five years. My brother, Jeffrey, was almost three and a
half years old.
I remember my young parents as the tall dark-haired
handsome couple swirling on the dance floor at numerous weddings and bar
mitzvahs. My father wears a dark blue suit and a matching tie; my mother
wears her flowing black dress with hand-painted yellow flowers down the
front and side. It is as if their love for each other, apparent in the
bearing of my mother's regal long neck and in my father's beaming eyes
and smile, propels them effortlessly across the floor.
I often try to imagine what it is like for a newly
born boy to spend his first six weeks in the hospital, the first four weeks
in an incubator. How frightening it must have been for a six-month-old
baby boy to be anesthetized and go through hours of surgical procedures.
For someone that young to spend so much time in a hospital. It is with
a mixture of horror and disbelief that I remember that young infant in
the incubator, that body on the operating table, was actually me.
It is cloudy and I think our planned night trip to
the beach will not be worthwhile. But as Kevin and I make our way from
the parking lot, past the closed concession stand and out onto the beach,
the clouds are a curtain, rising as it parts. By the time we have spread
our large blanket on the sand, the haze has moved beyond the horizon, revealing
the star-filled sky.
It is the midsummer night when the meteor showers
will be most active. The night when, if it is clear, it will be easiest
to see the shooting stars.
When our eyes adjust to the dark we begin to discern
other couples who, like us, have left indoor comfort behind, and lie on
their backs, open to the elements, awaiting the beginning of the show.
Some, farther down, have lit small fires. Triangles of orange flicker down
the beach. We listen to the tide, hear other people laughing.
Soon, after Kevin spots the first sudden flash of
light, we are laughing, too. Laughing and pointing to the next star, and
the next, and the next traveling in an instant the entire arc of the visible
sky. Before the mere flash it takes each star to burst across the galaxy,
extinguishing itself as it advances, another has begun its momentary flight.
It has always been difficult for me to comprehend
how the stars are sending light from so many years ago. That it took four
days for the space shuttle's transmissions of Neptune's likeness to reach
awaiting eyes on Earth seems to me unfathomable. The speed of light, 186,000
miles per second, has always been as incomprehensible to my mind as the
distance between the Earth and the stars.
Tonight, lying on the beach, Kevin's hand in mine,
I begin to name the stars. Not the constellations. Even when Kevin points
them out to me, even when I say I can see them, the truth is I cannot distinguish
the Big Dipper from Orion, one cluster of stars from another.
Instead I call out, "Shirley," the nickname for
my friend Cheryl. Kevin calls out, "Marcia," the name of another friend.
Soon we are naming every flash of light, using the names of our friends'
ex- boyfriends, and when we run out of them we use our own.
"Polio," spina bifida," "cerebral palsy," I hear
myself naming out loud diseases that in another world, a world in which
the connotations of disability are not pejorative, would be perfect names
for shooting stars.
Tonight, looking at the sky, I know what it is I
want to do. I want to be in an open space and feel Kevin's body close to
mine as we look around us, sharing what is happening this very moment before
our eyes.
But on this clear night I am able not only to understand
the clarity, the intimacy both physical and intangible, that two different
people can share, but at the same time I can see once again moving from
the horizon onto the shore, the haze that only hours ago made it unlikely
that we would be able to witness the stars.
Kevin's hand feels cold on my skin. As we watch
the sky his
hand mindlessly moves up and down my leg. The second finger on his
left hand begins to play with one of the holes adjoining the scar, just
above where my right foot juts out at almost ninety degrees from my leg.
Suddenly, involuntarily, I jump.
"What's the matter?" Kevin asks.
I take a deep breath and the warm night air gets
caught in my throat. I taste sand and ocean salt. But all I can smell is
ether-the antiseptic odor that pervaded Dr. Milgram's crowded waiting room
to his hospital office, when I was young.
How do I explain to Kevin the enormous respect I
had for my orthopedic surgeon, Dr. Joseph Milgram? How do I describe the
people from all over the world who sat with me in that fluo rescently lit,
linoleum-tiled waiting room? How do I begin to tell him how Dr. Milgram
made me feel special?
I always bragged to my friends about the important
doctor who took care of me in Manhattan. Even Alice, his secretary, was
surprised when Dr. Milgram asked her to write a check to pay for a subscription
to the magazine I would always read in the waiting room. He even gave my
parents his home telephone number, showed us photos of his upstate farm,
and once told my father that he felt like he was my grandfather.
Kevin watches the stars. I want to tell him why
I jumped. I want to tell him about the disagreement between Dr. Milgram
and the resident doctor. How, in 1970, after the major five-hour reconstructive
surgery on my right foot and leg, during which my foot was connected to
my leg only by a single blood vessel near where he had been touching, my
leg, held in position by two pins, was heavily bandaged but not put in
a cast. When the resident made his rounds he put the bandaged leg in a
plastic bag. When Dr. Milgram came the next day, he took it off saying
that it needed to breathe. The next day the resident put the bag back on
and Dr. Milgram on his next visit took it off. I want to tell Kevin how
these two men, supposedly working together so I could walk better, did
not agree on the best way to lessen the chance of infection in my leg.
I want to tell Kevin why I jumped when his finger
grazed that hole. I want him to know that when the pins were removed Dr.
Milgram at first insisted that it could be done without anesthetics. I
want to be able to describe the pain when that was tried, how it still
racks my body when the holes where the pins were inserted are touched.
I want Kevin to know that the next day, when the pins were successfully
removed, I was in the operating room under anesthesia. I want to tell him
that even though Dr. Milgram did not know what caused my legs to be deformed,
I needed to trust him. I want Kevin to know that despite any mistake he,
Kevin, might make, something harmful he might say or do, I want to trust
him, as I trusted my doctor.
I want to tell Kevin that although I am no longer
young, and that I understand more with each passing year, I am still afraid.
Afraid that after all these years, after all the surgery, after all the
psychotherapy, some wounds can never heal, that some wounds are actually
the scars.
. . . . . . .
With the development of amniocentesis and ultrasound
techniques, parents are now put into a situation with which my parents
were not confronted when I was born in 1960. It is now possible for parents
to know at various stages during pregnancy whether or not their child will
be born deformed. In the case of amniocentesis any genetic defects can
be detected quite early in a pregnancy. Ultrasound can detect nongenetic
deformities much later on. Knowing this information, some parents may now
choose to abort their unborn disabled child. Did my parents ever wish I
hadn't been born?
I now live precariously with the knowledge that
today, because my parents could know I would be deformed, they might decide
to not allow me to be born. I know how dispensable my life and the lives
of so many disabled people have been in many societies, most notably Germany
under Nazi rule. I am intimate with the mystery that if I was born in a
different time, at a different place, or even to different parents in the
same time and place, I might not have had this life to write about at all.