Miracle Boy Grows Up (2 page)

Not until the 1990s do researchers finally zero in on the exact genetic mechanism behind SMA. Most cases stem from a faulty gene on the fifth chromosome, which results in a deficiency of what’s called SMN1, a necessary protein. This deficiency, in turn, depletes motor-nerve cells in the spinal cord. But certain instances of infantile SMA have a different culprit—a mutation of a gene called UBE1, which happens to be on the X chromosome. This mutation impedes the disposal of a bad protein, allowing it to flourish. I don’t know which version causes my SMA. In either case, these markers make SMA scientifically identifiable and
may
someday lead to effective treatments.

But in the ’60s, when I’m a child, SMA is undiagnosable and, perhaps consequently, considered extremely rare by those who have heard of it at all.

So I’m at first diagnosed with many other conditions. Spina bifida. Brain damage. Mental retardation. That last one invariably coaxes a chuckle from my dad later, in the retelling: “Those
doctors
were retarded!” In my cerebral family, God forbid you should make fun of the
physically
handicapped—and don’t dare say “cripple”—but the mentally retarded are fair game.

One thing all the doctors and sundry experts agree upon, however, in the early ’60s: I’m a “floppy baby.” I have what’s called “floppy-baby syndrome.” It’s still a recognized pathology in medical dictionaries. I lack muscle tone. A more scientific-sounding word for lacking muscle tone is “amyotonia,” and that’s what becomes my first official diagnosis. I learn to say “amyotonia” before I can add two and two. For me, it’s a way of understanding my body—a plausible answer for the strangers who point at me and ask, “What’s wrong with him?”

Or more often, “What’s wrong with
her?”
The blond curls and long eyelashes I sport in those days apparently emasculate me. Never “What’s wrong
with you?”
I’m not considered competent to answer such a question myself until I’m at least seven.

Nothing is wrong with me! I just have amyotonia
, I think to myself. My typical spoken answer, once I’m old enough and courageous enough to speak up: “I can’t walk. I was born this way.” It seems simpler and sufficient.

I can’t walk or stand on my own. When I’m four, my doctors prescribe a battery of physical therapy; as part of it I’m fitted with heavy, metal leg braces. The braces lock me into a statue-straight posture. I’m then placed in a large wooden box, which supports my standing frame. I do this for an hour, three times a week, to aid circulation and overall well-being, or something. It’s the closest a modern American child can come to foot binding—yet it’s still recommended for many kids in wheelchairs! Luckily for me, the standing therapy is rescinded in a matter of months, when it’s determined to have no value. Nevertheless, other physical therapy exercises continue.

In nearly every other aspect I’m a healthy and happy kid. Yet every time I catch a cold I’m at high risk for pneumonia. I can’t cough with sufficient force to clear mucus from my lungs. Regardless, from an early age I refuse to think of myself as fragile. Sure, I’m floppy and do bump my head a lot, but I always bounce back. I’m tough, resilient. I’m a survivor. The labors of my disability strengthen my character.

Other remedies are offered from time to time by physicians, therapists, and outspoken streetcorner healers: Massive doses of vitamin E. Transplants of sheep blood. And, of course, acceptance of Jesus Christ as my savior. For the most part my parents resolutely favor modern medical science, but in those days even the legit experts come up abashedly empty-handed. For one thing, my symptoms keep defying expectations.

Specifically, I don’t die.

***

“T
oday my little brother fell out of his wheelchair and dropped his fire engine.”

This is what Alec writes in his first-grade composition book one spring weekend when I’m three. He writes it after Dad takes me to the Lamston’s under our apartment, on York Avenue at 79th Street in New York City. It’s one of my first outings in my shiny new green-upholstered wheelchair. Up till then much of my life experience is from the perspective of Mom’s slim hip, Dad’s long arms, a baby stroller or the sofa, wedged with pillows. But soon I’ll be starting nursery school—at Riverside Church, the only regular nursery school in the city that will take a physically handicapped kid in 1966—so I have to get a proper wheelchair.

I like Lamston’s. I’ve been there before. Our housekeeper / baby-nurse Inez has taken Alec and me a few times. Inez is strict. She’s what I understand is called an Egro. She and other Egro baby nurses and maids meet at the Lamston’s lunch counter to eat and smoke and gossip.

Today Dad says I can buy a toy at Lamston’s if I’ll be quiet and behave. It’s not hard to choose. I want a Matchbox car. When Dad is done shopping, I remind him of his promise and he pushes me to the toy aisle. But the Matchboxes are on a high shelf. Too high for me to see well from my wheelchair. Dad undoes my seatbelt and lifts me up for a better look. He’s strong and tall, and with him I feel safe and have no restrictions.

I pick a small fire engine. I don’t have any in my collection, and I want one because fire engines can go anywhere. They have no boundaries.

Dad buys it for me, and I clutch the little hook-and-ladder in my small hand as tightly as I can.

On the walk home Dad abruptly decides on a detour. Instead of pushing me around the corner at 79th Street he makes a sharp left toward the garage under our building. “A change of scene,” he says. The steep ramp down is dark and cool as we get closer. The descent begins, and I feel its pull beneath me. Dad holds tight to the handles of my wheelchair. The downward pressure intensifies. Before I know what’s happening I’m tumbling out of my wheelchair onto the hard, oil-stained incline. And I keep rolling . . . out of control, on my own, a rag doll without enough muscle to stop myself . . . until I bump against a side wall. And just lie there.

I don’t remember crying. I don’t remember hurting. I remember
thinking
—having an acute, reflexive alertness to my surroundings and taking a kind of mental inventory of where I am and how I’m feeling. An out-of-body alertness. There is nothing else I
can
do. I’m too stunned to hurt or cry. I can’t move anything—I
never
can—but I can be aware and wholly conscious, an omniscient observer. Then Dad is there, beside me, asking how I am, touching me, examining me for damage and scooping me up off the garage floor and placing me back in my chair. This time he remembers the seat belt.

He keeps asking if I’m okay. This is when I start to cry. A few heaves at first, then gushes. He rushes me upstairs, to our apartment, to Mom. I can’t stop crying, though I try. I become breathless.

“There, there,” says Mom, taking me into her arms. She quickly turns practical. “Stop your crying and tell me what hurts.”

I can’t stop bawling and haven’t a chance of answering. She holds me still a moment and it feels warm and lovely. Then Mom sees a bump on my head. I mutter about my finger and try to produce my right hand. Its ring finger is swollen and rosy-purple and aching. Mom calls for ice, which Dad promptly delivers. My weeping subsides, replaced by a
youch
at the touch of ice to my scalp.

“You’ll be fine,” Mom declares.

She puts the ice to my finger and looks up at Dad with lightning bolts.

Parents of kids with disabilities tend to be unduly overprotective. It’s the extra layer of guilt. From the start they feel responsible for their child’s limitations. It doesn’t matter if the disability is from an accident or heredity; parents see it as a gnawing reminder of their own shortcomings. They feel intrinsically blameworthy. I’m grateful my parents aren’t
overly
overprotective, but they feel the guilt. For Mom, the day she learned my floppiness was permanent and inborn was the worst of her life. She tells me this whenever I ask and even when I don’t. That’s partly because she’s concerned about my future, but she also questions what she did to deserve this. For Dad, the guilt feelings evolve into a hunt for solutions, and for someone to blame besides himself.

Many parents turn angry—an animal rage directed at doctors, bureaucrats, God, or even the child him- or herself. Sometimes these feelings spark a crusade for remediation or justice, a frantic pursuit of a lawsuit, a cure, or political action. But whatever the merits of the cause, the fire is stoked primarily by the need to alleviate the parent’s unbearable burden, which is not necessarily in the child’s best interest.

“You must, must,
must
remember the seat belt,” Mom scolds Dad, who stands silently nodding. “How could you forget?”

A spate of rhetorical questions follows. Could she trust him ever again? By extension, if my own father can forget my seat belt what about other people to whom my care is entrusted?

“This cannot happen again!” she says repeatedly.

Then Mom’s hard tone turns abruptly to me. It’s in her Republican upbringing to have no patience for self-pity and whining.
Look out for yourself. Don’t wait for a handout
. She’s always quick with advice to
step up to the plate
. She keeps an ongoing, or quickly composed, mental to-do list, which she likes to whip out like a gunslinger.

“And Ben,” she says then, “Ben, it’s your responsibility to check if the person with you has forgotten your seat belt. Do you understand? Do you hear me? Ultimately it’s
your
responsibility. You must always, always speak up. Understand?”

Not yet four, I’m stunned yet struggle to comprehend. I try to take her admonitions as seriously as I can.
Speak up. Don’t be shy. Ask for what you need. People aren’t mind readers. You’ve got to speak up
. I hear these phrases a lot.
Light a candle instead of cursing the darkness. The squeaky wheel, etc
.

In those days, the mid-1960s, there are scant resources for my parents to draw on, other than doctors. No support groups. No disability-rights organizations or independent-living centers. No sense of a shared, group identity disability-wise, except perhaps for disabled veterans. Any notion of the disabled as a class of ordinary citizens, a population worthy of civil rights, is years away. The first Civil Rights Act, passed in July 1964, when I’m nineteen months old—two years before my garage accident—applies almost exclusively to Black people, of course. It never occurs to anyone, let alone my parents, to extend antidiscrimination and equal opportunity to people with disabilities. Not like in the early twenty-first century, when we know that some 51 million Americans—or 18 percent of the population—have a disability, making us the single largest minority and thus unavoidably deserving of a voice supported by legislation.

The percentage of disabled Americans in the 1960s is probably smaller, though, because medicine and technology aren’t yet doing such a good job of keeping us alive.

Medicine aside, to survive with a disability involves equal doses of toughness, pluck, and grit mixed with humor, a stiff upper lip, love, luck, and money. In those days, and perhaps still today, you’d best follow the Franklin Roosevelt model: Hide the handicap and its apparatus as much as possible. Minimize them. If and when they slip out, simply flash a winning grin. Use your limitation as a sign of strength and courage, not sorrow, shock, or loss. An emblem of overcoming, of achieving despite all.

But is that best?

To be sure, Mom and Dad don’t exactly realize they’re subscribing to the FDR model. They simply want me to remember I have nothing to fear but fear itself. Yet that afternoon, as Mom lectures me about speaking up and taking care of myself, in my mind I’m still falling down the garage ramp and smacking up against a stark reality: I’m undeniably, unavoidably vulnerable, no matter how much spunk I may possess. My new green wheelchair—a badge of growing up, of going to kindergarten, of greater independence—brings a host of unforeseen risks and burdens.

Everything is double-edged! There can be nothing good without something bad!

I’m not yet four, but I might as well be forty.

It’s not right to call this premature self-awareness a kind of wisdom, though, because it’s simply practical knowledge learned the hard way, an attitude derived from struggle. It’s nothing to be proud of. The wisdom, if there is any, would come from knowing when to use this knowledge of vulnerability and when not to be dragged down by it. And that I have yet to learn.

Once iced, my purple finger continues to throb. It throbs for an eternity. I shy away from using my right hand to draw with. I blame myself a little for the accident. I could have remembered the seat belt.

For a month afterward Mom asks me to check my seat belt, but then she too begins to forget. She does not wallow. I want to get past it even more than she does. Over time I learn to bury, or re-bury, my frustrations and fears. I will not let bumps and barriers make me fearful or reticent. Rather, I remind myself that hardships build character. They make me a stronger person.

It’s a guise I can maintain for only so long.

Perhaps even then I do have an inkling about my life ahead: I can already sense it will be split along two divergent paths—the normal expectations of a son of New York Jewish liberal educated intelligent parents to go out in the world, advance, and take charge of his own actions and fate, and the dangerous, ineluctable fragility of the hopelessly, severely disabled.

To live with this dichotomy between upwardly mobile overachiever and delicate flower with what today is foolishly called “special needs”—to live with
myself—
I’ll have to learn to navigate between or, better yet, balance, redefine, and integrate these two discrepant identities and potential destinies.

It’s a struggle that continues for the rest of my life.