Miracle Boy Grows Up (5 page)

I watch silently. The girl doesn’t do much, just stands there as a camera clicks. Then a stout man in a dull tan suit waves for Mom to bring me over. I’m parked in my wheelchair next to the girl. An even fatter man in shirtsleeves starts snapping photos of the two of us. Am I supposed to do something? Besides squint at the bright light, that is. After a while, we’re told we’re done. I wonder, is this what it means to be a poster child?

The photo appears in a Sunday supplement my family doesn’t normally get. I dream of fame, but no one I know sees the picture.

In December I’m photographed on Santa’s lap for the
Daily News
. At seven, I’m beginning to have doubts about Santa, but I figure it’s probably not the
real
one for the picture, since I’m not sure Santa does that kind of work. Some Jewish kids don’t celebrate Christmas, but we do.

Two weeks later the photo appears. My parents buy a few copies of the
Daily News
, another paper they never look at. I don’t pay attention to the words under the picture, but Alec tells me it says Santa cares about Jerry’s kids. I have trouble understanding the phrase “Jerry’s kids” because, for one thing, I’ve never met Jerry.

I’m invited to appear in a New York TV studio during the next Labor Day telethon, but still never meet Jerry. I meet the host of TV’s
Wonderama
, Sonny Fox. And later, at another fundraising event, I meet
Wonderama’s
new MC, Bob McAllister, but that’s about as exciting as it gets.

When I’m eight, I pose for a full-page magazine ad “standing” in my old uncomfortable leg braces beneath the sappy caption, “If I grow up I want to be a fireman.”

If?
My life expectancy is normal! Mom and Dad and Dr. Spiro have told me so.

Besides, I don’t want to be a fireman. It’s someone else’s boyhood fantasy, someone who can walk and climb, perhaps, but not mine. I want to go further; I want to be a superhero, a police detective, a starship captain, a brilliant scientist like Dr. Quest on
Jonny Quest
, but never a fireman.

I keep my fingers crossed behind my back as the camera clicks. I look up, visualize a secret laboratory and sparkling, computerized panels in an attempt to communicate my true desires by ESP. Afterward I tell Mom I want to quit being a poster child. She asks if I’m sure but offers no further objection.

The truth is, I’m beginning to recognize that I’m not particularly interested in being able to walk. I’ve invested a lot in getting used to life on wheels. I like having someone always with me, pushing me and protecting me from the world. Walking seems a dangerous way to get around, two legs a perilous perch. Aren’t walkers always complaining about sore and tired feet? Being in a wheelchair is part of what makes me stand out from the crowd, so to speak. It’s a piece of my identity.

My “identity” seems to be one thing in these MDA ads and quite another in my real-world daily life. My handicap may be measurable to Dr. Spiro, but what it means—its impact on who I am and my place in the world—is open to broad interpretation.

The following Labor Day, after I’ve quit, we turn on the TV to watch a little bit of the telethon. To me, it’s boring and corny and my mind wanders. Mom doesn’t like TV (which is funny since she used to work in TV), and has little patience for the broadcast despite her fondness for the muscular-dystrophy organization itself, but Dad is transfixed. “Oh, oh, oh!” he erupts suddenly with forced melodrama. “Those poor kids! I’ve got to call right now and pour out my nickels and dimes!”

Then he bursts into a hearty laugh. Alec laughs at Dad’s laughing, and I do too. I’m not sure I get the joke, but it has something to do with the schmaltzy profiles of weird, dying kids. Usually Alec and I like to watch comedies like

F Troop
and
I Dream of Jeannie
, which Mom and Dad don’t watch with us. Another show I like is
Ironside
, which Mom suggested I try. She thinks I like it because the police chief is in a wheelchair, but that’s not really the point of the show, is it? Still, it’s a very different image of people like me than what you usually see on the telethon.

“You shouldn’t make fun of them,” Mom says, reentering the room. The TV is in Mom and Dad’s bedroom, and she’s come in to get something from her desk. “Just because they’re not like Ben doesn’t give you the right. It’s a good cause and it just might help Ben one of these days.”

Dad says he’s sorry and didn’t mean any harm. “I know it’s important,” he says from the phone. He’s gotten up from their king-size bed to call in a donation.
They’re not like Ben
. That’s what Mom said. That’s what I hear. It’s been the going line for a long time. I’m different from other handicapped kids. When people treat me like I
am
one of those pathetic dying kids, when strangers feel sorry for me, it’s funny in both senses of the word—odd and humorous. On occasion little old ladies offer to buy me cookies, and my parents won’t let them. Mom says I shouldn’t feel sorry for myself and shouldn’t encourage other people to either.

So why, I wonder, does she defend the telethon? It does bring images of kids in wheelchairs into people’s homes, instead of maintaining the status quo of unsightliness and shame. But it certainly doesn’t make them look good or competent or equal. It doesn’t glamorize them. It offers them up covered in a syrupy goo of sentimentality.

And if those kids aren’t like me—and they aren’t—then why does Mom say the Muscular Dystrophy Association helps families like ours? What’s it got to do with me? I don’t have muscular dystrophy. I’m not going to die from my spinal muscular atrophy—that’s what Dr. Spiro says, anyway. I’ve outlived the dying phase.

I don’t see how the pathetic spazzes on the telethon have anything to do with me except for being in wheelchairs.

Unless I’m wrong about myself. About them.

No, I definitely don’t want to be confused with those kids. I don’t want to feel sorry for them, either. It’s too depressing to bear, and I wonder if it’s real anyway, if those kids are as bad off as they say, or if they’re actually like me and the telethon is just telling people to feel sorry for them. In any case, I’m brought up to keep moving forward, never to pause for pity. Pity is useless, the enemy of self-esteem and industry.

Mom always says I can be anything I want when I grow up, and I believe it’s true.

1972–1976

“For her, of course, the measure of how you held up in the face of a life-threatening illness was not how much you changed but how much you stayed the same, in control of your own identity.”

—Calvin Trillin,
About Alice

O
ver Thanksgiving weekend back in 1955, my parents meet. It’s a blind date set up by Dad’s Aunt Clara. Dad—then just Everett—is twenty-seven, visiting home (Columbus, Ohio) from Los Angeles, where he’s been the past five years, since graduating magna cum laude and Phi Beta Kappa from Harvard. He’s earning a master’s in English at UCLA and working as a sales clerk at the May Company on Wilshire Boulevard, among other odd jobs. He has considered law school for next year, yet finds the reading list intimidating. In truth, he isn’t at all sure what to do with the rest of his life. He’s also grown tired of LA’s beautiful but, alas, intellectually mediocre women.

He ventures to Paula’s Cincinnati home—a tidy, cramped, two-room row house—with some trepidation. Paula, just nineteen, is home from Wellesley College, where she’s a junior. An only child from a poor family. What could they possibly have in common?

After shaking hands, Paula’s father immediately washes his right hand. He’s an odd bird with a kind-eyed but brittle-looking wife, who doesn’t want to let Paula go when it’s time to leave.

Paula, petite and pretty in an unconventional way—not
too
pretty, thankfully!—seems eager to hightail it. She wears her shoulder-length wavy brown hair in a modern, unfussy way, and owlish black-rimmed glasses.

At the candle-lit restaurant, chosen on the authority of Aunt Clara, their conversation moves quickly to literature and art and philosophy . . . his passion for Lionel Trilling . . . hers for Joyce . . . his chauvinism for Dickens, Thomas Mann, and the masterful E. M. Forster . . . hers for Graham Greene and Maupassant . . . the influence of Benjamin Disraeli and the rise of Jewish secularism . . . and the pleasures of European cinema, especially Renoir’s
La Grande Illusion
and De Sica’s
Bicycle Thief
“and a rising Swedish director named Ingmar Bergman. He’s beguiled by her academic curiosity—her very vocabulary!—and even her enthusiasm for Tom Lehrer. So different from the empty chatter of LA girls.

Three weeks later they set a wedding date—December 27, which will be Paula’s twentieth birthday. Yet a few days before the wedding, Mrs. Plotnick confronts Everett. “If you’re having second thoughts, say so now. Hurt my daughter
before
the wedding, not after.”

It’s uncanny! Has Everett let slip that he’s feeling too young to be sure of anything, let alone love, and thinking Paula, though poised and self-confident, is practically a child who couldn’t know what she’s doing? “Don’t be silly,” he says.

“Come now. You can tell
me
. If you don’t want to face Paula directly. Be a mensch.”

But isn’t a mensch
supposed
to be married, certainly by his age? It’s the right thing to do. After all, to put his cold feet in perspective, he’s never sure of anything.

In retrospect, their intellectual compatibility notwithstanding, their backgrounds are substantially different. Everett’s family is well-to-do. His father, Jacob—whom he finds a contemptible, intimidating, Old Country boor—is a shrewd businessman. Arriving at Ellis Island at age twelve all alone, in steerage from Russia by way of England, Jacob Mattlin made his way to Columbus with nothing. He had distant family there who provided scant help, only a geographical destination.

Once settled in Columbus, Jacob Mattlin launched a successful cooperage. He made pickle barrels for the H. J. Heinz Company; other customers may or may not have included bootleggers. Jack, as he became known, married a beautiful American woman—the daughter of a previous generation of Russian immigrants, who had grown up in the neighboring state of Kentucky—and they had two sons. When Irwin, the younger one, died at the tender age of nine from influenza, Jack and Jennie went and had another. They named the replacement boy Everett—a goyish appellation, connoting their assimilation.

The Great Depression, and possibly the repeal of Prohibition, nearly wiped out Jack’s barrel business, but the scrappy entrepreneur pulled himself up again by launching a machine shop that supplied the war effort (Everett was shocked to discover his father paid off officials, in whiskey, not to inspect the factory’s quality control too closely) and buying property cheap.

The legend goes on and on. Everett’s never sure how much of it’s true, but he never could live up to his larger-than-life papa. Unlike his brother Morey— sixteen years his senior—who would’ve played football at Ohio State, if not for his “trick knees” (caused by a baseball injury in high school!), and served as a private in World War II (though he never went overseas, thanks to a deal Jack worked out with the local congressman), and would soon inherit and expand the family real-estate business.

For the bookish Everett, having a child with a disability years later is maybe another sign of failing to live up to some standard.

By contrast, Paula’s nebbishy father, Samuel Plotnick, the germ-obsessed struggling attorney, born in Ohio to immigrant parents from Lithuania, was unyieldingly pious. His wife, the former Molly Bernhardt, of Baltimore, who emigrated as an infant with her family from Latvia, maintained an Old World stoicism. What was the use in complaining about her husband’s religious strictures or the miserable, hardhanded life he made for them? This became her way in all things.

When as a small child Paula tripped and scraped her knees, Molly told her not to cry. “Scrapes are a fact of life. Scabby knees mean you’re having fun! Now pull your socks up before your father comes home from shul.”

The message was clear: Feeling sorry for yourself does no good. Years later, Paula will revert to this lemonade-from-lemons coping mechanism in reaction to my disability.

Given all their differences, perhaps it’s not surprising my parents’ marriage dissolves after seventeen years. It’s 1972—practically everybody is divorcing! I’m nine years old, Alec is twelve. Dad, forty-four, is doubtless in the midst of a midlife crisis. Yet could my disability—the strain it puts on them, the differences in their reactions to it—be partly responsible?

Before I’m born—before Alec, for that matter—Dad quits teaching freshman composition at Boston University to take the editorship of a new quarterly magazine called
Apparel Arts
, later renamed
Gentleman’s Quarterly
, or
GQ
. The young couple moves to New York’s Upper East Side. Paula lands a job at CBS television, where she works alongside celebrities John Houseman, John Frankenheimer, and others. Richard Burton propositions her while she’s pregnant with her first child (she turns him down), who will be named Jay Alexander—“Jay” after his late grandfather Jacob/Jack, though the family always calls him Alec.