Hands of My Father: A Hearing Boy, His Deaf Parents, and the Language of Love (10 page)

O
ne night I was awakened by sounds I had never heard before. I groped for the switch on my bedside lamp, and when I turned the knob, I saw a sight that made me gasp. In the bed next to mine, the location he had slept in all of his life, my brother was gripped with an epileptic grand mal seizure. His eyes were rolled back in his head, only the whites showing. The skin on his face was drawn tightly to his skull. His mouth was clamped shut, with the edge of his tongue protruding, and blood was spurting all over his white pillowcase. His body was as rigid as a wooden plank. He squirmed and writhed and jerked about. His arms and legs flew in every direction, like the demented arms of a windmill. Sweat was flying from his body. I was stunned, turned to stone.

I couldn’t say afterward if his seizure had lasted one minute or an hour. Time had no meaning. My entire focus of attention was on my brother as he was transformed into a creature beyond my comprehension.

When he was finally still—which happened, it seemed, in an instant—he lay there drenched in sweat, his face covered in blood, completely unconscious.

In time—I can’t say how long—I went to get my father and mother. When I jerked my father awake, the look on my face threw him into a panic, and my mother screamed. Rushing into my bedroom, they saw a sight that is the stuff of every parent’s nightmare: their son covered in blood, blood everywhere on his sheets and pillow, while he lay, scarcely breathing, as if dead.

While my mother held his now limp, boneless, virtually lifeless body in her arms, my father tenderly wiped the blood from his body and face with a damp cloth, searching for its source.

That evening was the beginning of a year of nonstop, nightly seizures. Every night when it was time to go to sleep, my father tied a cloth strip from my arm to my brother’s arm as he lay in his bed, which was now drawn right alongside my own. On my bedside table was a selection of wooden tongue depressors, which my father had wrapped thickly in gauze. My instructions were simple. “When you feel the cloth jerk, that’s the signal that Irwin will be going into a seizure. Get up immediately. Straddle your brother, force his jaws open, clear his tongue away from his teeth, and slip the tongue depressor between his jaws, making sure, doubly sure, that his tongue is clear of his teeth. Then, and only then, remove your fingers from his mouth. Be sure, but be quick. When he goes into convulsions, straddle his body between your thighs, and hold him as still as you can. Whatever you do, don’t let him jerk himself off his bed.” He added, “Your mother and I are counting on you. You can hear. We are deaf.” I was nine years old.

I became quite adept at these esoteric skills. I slept lightly, never dreaming, and would snap awake the instant my brother stiffened, which happened each night that first year, as regularly as a clock alarm. His arm would jerk, the cloth stretched between us would yank on my arm, and I would leap onto his body, straddling him between my thighs. A gauze-wrapped tongue depressor found its way into my hand without any conscious thought on my part. Holding his mouth open, I thrust the depressor into his mouth and pushed aside his tongue. Most nights I was successful. Some nights I managed to get my fingers out of his mouth before it snapped shut, but I was not able to clear his tongue completely from his clenching jaws. Then the blood would fly. Occasionally I was not quick enough to remove my fingers before his jaws clamped shut, and then my blood would mingle with his.

Deep into that year my brother began to have episodes of repeated seizures. When this happened, I had to awaken our downstairs neighbor and ask to use her phone so that I could call 911 (or whatever its equivalent was sixty-five years ago). She did not once complain. When the ambulance arrived, I accompanied my father and my unconscious brother to Coney Island Hospital. There I went through the usual routine of being my father’s ears and voice. But in this situation I was also the voice and ears of my unconscious brother.

I instinctively knew that my father hated being in this situation, helpless because of his deafness. And the unthinking, uncaring, unsympathetic treatment he received from the hospital staff—all of them, from ambulance driver to orderly to nurse and doctor—was deeply painful to him. Not one of them had a moment for my father. I, on the other hand, was the center of their attention. As an adult with children of my own, I can very well imagine the humiliation my father must have felt at those times: ignored and dismissed as if he were a child of no consequence, while I was spoken to almost as the parent of my little brother.

My brother’s epileptic seizures were to last for five years, gradually diminishing in frequency. During that time he drank a daily concoction of powerful sedatives—including phenobarbital—which transformed him into a virtual zombie. And although he entered school at the appropriate age, he never seemed to be fully aware of what was going on in his classes; he always seemed to be sleepwalking. As he told me many years later about his school years, “I just didn’t get it.” How could he, drugged into oblivion by sedatives that would never be prescribed for an epileptic child today?

Eventually my brother’s seizures ceased. But by then my mother’s heart was broken.

M
y own feelings toward my brother were complex. From the age of nine, my age at the time my brother’s seizures began, until I discovered the escape that high school football afforded me, my love for my brother was infused with resentment for his ceaseless need of me. He was never merely my younger brother—that could never be, because of the sticky web of responsibility in which I was forever entangled. Almost from the moment he was born I was responsible for “minding” him. That meant that my primary focus was on him and not on me; on his needs, not mine. Needs that in my mother’s and father’s eyes, of necessity, took precedence over mine. With the onset of his epileptic seizures, my needs were not merely overlooked—they were obliterated.

And, of course, my brother was my complete responsibility at night.

As he grew older, I was tasked not only with teaching him how to speak but acting as translator between him and our parents. In time he acquired a basic proficiency in sign language from casual instructions from our parents. But for much of our childhood, the more complex flow of language between them and him was through me.

My first language had been sign. Because of me, my brother’s first language would be spoken. When he was a baby, I thought it would be fun to get him to speak. But soon it became work. During his acquisition of spoken language, it was my responsibility to keep my parents abreast of his progress. After all, being deaf, how could they possibly know if my tutelage was succeeding?

I loved my brother and felt deeply sorry for him, but I experienced his dependence on me, and his unvoiced expectation that I would fulfill the role of caretaker, as a burden. And while I adored my father, he, too, was a burden on me, one that I often wished I did not have to shoulder.

Why was I the only kid on my block, certainly in all of Brooklyn, probably in the entire world, who was responsible for an epileptic brother and two deaf parents?
I wondered, bathed in the warm waters of self-pity.
Why couldn’t I be like everyone else on my block? It just wasn’t fair,
I thought.
I’m just a kid.

I had found within myself a state of dull resignation at being the son of deaf parents, with all the obligations that entailed. But my epileptic brother, and the added responsibility that he created for me, was another matter. It was one thing to be singled out on my street as the son of the “deafies” in 3A, which is all my parents were ever known as on our block. Not as Louis and Sarah; not as Mr. and Mrs. Uhlberg; but rather as the “deaf and dumb mutes in 3A.” This unthinking consignment as objects of curiosity, and even pity, was something I had adapted to. But to be minding my brother in the street on a sunny afternoon when my father was at work and my mother was busy cleaning our apartment, and have him suddenly, inexplicably, stiffen, go glassy-eyed, and fall as a dead man to the pavement, was another thing entirely. Lying there, helpless, he would spasm into convulsions, his body as rigid as if petrified, transformed in an instant from an organic being into a stony replica of a little boy.

My friends would swarm around us, staring slack-jawed at the sight of my brother thrashing around uncontrollably on the sidewalk, often sliding off the curb and into the gutter. All the while I was astride him, as if riding a bucking horse.

Through some compensatory sense of telepathy granted to the deaf by an uncaring god with a perverse sense of humor, my mother would often sense the event and would hang from our third-floor bedroom window, keening in her deaf voice at the sight.

T
here were times when I would come into our apartment, after playing all afternoon on our block, and catch my father and mother deep in conversation. When they were that engrossed with each other’s signs, they were completely oblivious to my presence. If I wanted their attention, I would have to stomp my feet repeatedly on our wooden floor (and risk the downstairs neighbor banging a broom on her ceiling) or position myself between their flying hands. But once when I came home, I was so astonished by what my father was saying to my mother that I could only watch.

“Why didn’t you
listen
to me, Sarah? I told you, one child was enough. Now look, we have a poor boy who has fits all night and who sleeps all day. And when he does wake up, he’s never fully awake, what with all the medication he takes. I told you, but you wouldn’t listen.”

“Why do you tell me this now?” my mother signed. “What’s done is done. There’s no going back. I took the hot baths you asked me to, every night for a month. They didn’t work, and I’m glad they didn’t. It was God’s will that he be born. It’s not his fault he’s sick like this. We’ll manage.
Leave me alone!
”

“Don’t talk to me about God. What did God ever do for me?” my father’s hand jerked up above his head and dropped, as he signed “the One above.” My father’s sign for God was abrupt, dismissive. “He made me deaf and spared my sisters and brother. And he made you deaf as well, while sparing
your
brothers and sister.”

I could not stand to see my father and mother arguing like this. It was rare, and in some deep way it scared me, as if I had become unmoored, adrift between my deaf parents and my sick brother. I ran outdoors, seeking escape in the company of my friends, and did not return until I heard my mother calling for me from our apartment window. Then I came back, and they were no longer arguing about my brother, or my father’s indifferent God.

 
Memorabilia
 

Trains, Trains, Trains

T
he day I turned seven my father came home from work carrying a large gaily wrapped box under his arm. It was a train set.

“This train,” his hands informed me, “is the Blue Comet!” Sitting on the floor, he assembled the tracks. Carefully he set the locomotive with its coal car and passenger cars on the track.

“The Blue Comet,” my father’s fingers spelled the name with exquisite care, “is ready to roll.”

At bedtime he took the tracks apart and put the train back in the box.

The next night he came home with yet another big box under his arm.

“This train,” he announced, finger-spelling the name, “is the Pennsylvania Flyer.”

Adding new sections of track to the old, he positioned the new train with its boxcars and caboose behind the Blue Comet. Placing an engineer’s cap on his head, he said, “Let ’er roll!”