Miracle Boy Grows Up

BEN MATTLIN

Copyright © 2012 by Ben Mattlin

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Library of Congress Cataloging-in-Publication Data is available on file.

ISBN: 978-1-61608-731-9

Printed in the United States of America

FOR MY FAMILY OF ORIGIN AND MY FAMILY NOW—

I am truly fortunate.

“No matter what we have come through, or how many perils we have safely passed, or how imperfect and jagged—in some places perhaps irreparably— our life has been, we cannot in our heart of hearts imagine how it could have been different.”

—Randolph S. Bourne,
Youth And Life
(Chapter VI: “The Adventure of Life”)

Cover

Introduction

CHAPTER 1: Two Roads Diverged in Apartment 2B

CHAPTER 2: Disability as a Social Condition

CHAPTER 3: Divorce, Bar Mitzvahs, and Preadolescence—Wasn’t My Life Hard Enough?

CHAPTER 4: My Unfortunate, Life-Changing Incarceration

CHAPTER 5: The End of Childhood

CHAPTER 6:
Maman Est Morte

CHAPTER 7: What I Gained and Lost in College

CHAPTER 8: If No One Notices a Disability, Does it Really Exist?

CHAPTER 9: Becoming More Disabled

CHAPTER 10: Nesting

CHAPTER 11: The Bubble Bursts

CHAPTER 12: The Ghanaian Connection

M
y new attendant’s first day starts with basic training: how to wash me (“first the soap . . . ”), dress me (“slide one foot into the jeans leg, then the other . . .”), and lift me from bed into my wheelchair (“put one hand under my knees and the other behind my back and lift me like a groom carries a bride over the threshold . . . ”).

A UCLA student from Ghana, Africa, Jerry had answered my classified ad in the
Daily Bruin
, the university newspaper, for a morning attendant. The
Bruin
is my latest favorite attendant source. Its circulation spans the local community, and its classifieds supply staff to many nearby restaurants and doctors’ offices. Something about being just another area employer appeals to me.

Since my last attendant quit several months ago—the group home for retarded adults, his other job, demanded more of him—I’ve been eager to find a replacement but didn’t want to be too hasty either. I know the right guy can improve my mood, my productivity, my family’s quality of life. I don’t know why attendants have this power over me. Doubtless it has to do with their being such a constant presence, to the extent that they function as my arms and legs. Perhaps it’s also because they always used to be older than I am; I saw them as surrogate big brothers or even fathers. Now that I’m nearly forty-four, I should be in the daddy role. I should have more natural authority. Maybe it’ll go better from now on.

My first impression of Jerry was the proper résumé he’d e-mailed, which is unheard of in this line of work. He’d then arrived on time for his interview, neatly shutting the door behind him, which I always watch for as a sign of not just tidiness but a sense of personal responsibility. He’d proffered a hand, and I as usual said something like “can’t reach you, but I’m pleased to meet you.” He’d calmly proceeded to lower himself onto our sofa, pushing up his glasses and pulling up his loose-fitting, low-slung jeans.

I always try to imagine how it will be seeing this person early in the morning, when I’m not awake enough to want to see anybody. Jerry looked scruffy—long dreadlocky hair and a ragged beard of sorts, like many young men these days.

“How are you today?” he’d asked, presenting a typed list of references, which is impressive in itself. “And what would you like to know about me?”

No obvious accent, which reassured me there’s a fair chance of good verbal communication. For me that’s essential, since I can’t point or otherwise demonstrate physically what I need.

Jerry has just transferred to UCLA. He’s twenty-five and on a student visa. He works evenings with troubled high school kids. He likes helping people— his goal is to get a good education and go back to his country to help institute social reforms and keep the peace—but has never worked with disabled people or in any kind of medical setting.

That’s the way I like it. I don’t want to be called “the patient.” Those with any kind of background in the field tend to think they know what’s best for me. They don’t. Not all of us who ride in wheelchairs are the same.

“Your ad said ’will train,’ and I like that,” he’d said next, smiling. “When you say you need me to shave you, for example, you can explain how?”

“Yes,” I’d answered, thinking
I’ve found my man
.

I told him I’d check his references and be back in touch shortly. It may sound like a dodge, but I always check references. In the past, I’ve uncovered all kinds of unforgivable dirt. His turned out to be stellar. A few days later I offered him the position—two hours every weekday. That’s all I could afford at the moment.

After a successful first day, while tying my shoes, Jerry asks a question that’s dangerously close to my tolerance boundary: “How do you stay so positive?”

It’s just baby steps from calling me inspirational. Which I’m used to, of course, but still. “I don’t, and I’m not,” I answer. “Just doing what I gotta do.”

The next day he again comments on how much he enjoys my “positivity” and wonders what keeps me going.

“Necessity,” I say sarcastically.

“There’s so much anger out there,” he goes on, undeterred. “I work with high school kids who have trouble functioning because they’re so filled with anger. You don’t get angry?”

“Sure. Wait till you know me longer.”

Gradually, it sinks through my self-righteous emotional shield, burnished by the disability-rights movement to rebuff all but the most specific forms of praise. There’s something different about what he’s saying. My earnest young employee is commenting not about something over which I’ve no control— the fact that I’ve lived my whole life with a severe neuromuscular condition— but about my attitude, an attitude I’ve adopted and nurtured, a doggedly honed personality trait, a survival strategy, perhaps. He might’ve asked the same question if I didn’t have a disability!

How have you survived this sometimes rough world?

I could’ve asked him the same question. An immigrant from a poor country, working his way through school, dedicated to helping others. What drives
him?
(Another odd realization: This time the attendant is inspiring
me
!)

Usually the “you’re so inspirational” business is followed by something like, “You should write a book about your life. It would be
so
inspirational for so
many
people! Then you could go on
Oprah!”
Which turns me off. Nothing against Oprah, but let survivors of abuse, cancer, or war coax tears from readers’ eyes. Not me.

Yet Jerry doesn’t resort to the book-and-Oprah spiel. Not exactly. What he does do, that morning and for many others that follow, is get me talking. And that’s when I realize something. I do have a lot to say. And I do have a personal history that’s not the same as everybody else’s. It’s a story of luck and persistence, by turns ordinary and extraordinary. And, upon further reflection, I come to see how closely my story tracks a surge of unprecedented advances in medicine, technology, and civil rights that people with disabilities have enjoyed and harnessed. Indeed, the synchronicity between that movement and my own is surely more than coincidental.

Maybe it’s my age. There comes a point when you get too old to care what other people think. Perhaps I’ve at last reached a level of maturity from where I can look back at my varied experiences with unself-conscious honesty and feel nothing but humbled and grateful.

And if it happens to inspire people, that’s
their
problem!

1962–1966

“I am not my body; my body is nothing without me.”

—Tom Stoppard,
Rock ’n’ Roll

I
n 1962, some 4 million babies were born in the US—nearly 700 of them with an undiagnosed neurological disorder that will gradually weaken their muscles until, in most cases, breathing becomes too difficult, pumping blood becomes impossible, and they die.

I am one of the 700.

Though hereditary and therefore genetically present at birth, spinal muscular atrophy—as it’s now known—can remain invisible until late-childhood or even adulthood. Mine shows up before I’m six months old. Half of those who manifest symptoms in infancy die before they reach the age of two. Their hearts and lungs become too weak to go on.

I am one of the lucky ones.

By the time I’m six months old, my mother has already noticed I’m not progressing as my older brother Alec did. I can’t sit up by myself. When placed in a sitting position, I fall over. After I bang my head on the parquet countless times, my parents stop sitting me on the floor. They sit me on the sofa instead, surrounded by pillows. They sit me in a high chair, where I can be strapped in. Later, they put a small football helmet on me, especially when I try to balance on my rocking horse or tricycle, or when Alec and I roughhouse. It’s too heavy, however, and makes staying upright even harder.

My parents know something is wrong, but they don’t know what.

They ask the pediatrician, who refers them to a specialist. The specialist recommends another specialist. And so on. The months become years, during which I am paraded before countless physicians, therapists, researchers, and even a few crackpots. No faith healers (thank God!); my parents are not praying people. Still, I wouldn’t be surprised if they offered up a few silent ones during the long waits in hushed waiting rooms and perhaps in the dead of night.

Even in the twenty-first century, when SMA is well known among neurologists, there’s no slowing or stopping it. It’s now considered the most common cause of genetically based neonatal death. It’s estimated that one in every 6,000 Americans is born with a form of it, and one in 40 carries the gene that causes it without ever manifesting symptoms. In comparison, approximately one in every 300 Americans is HIV-positive, and one in every 206 has some form of cancer, according to the Centers for Disease Control and Prevention. SMA is more common than, say, ovarian cancer, which strikes one in every 8,065 American women (including my mother and maternal grandmother).