Miracle Boy Grows Up

by Ben Mattlin

  We have a small house on Fire Island. Austin stays in the guest bedroom. Once I overhear Mom talking with her friends; all the women have a crush on him.

  In the fall Austin attends Yeshiva University. Soon he introduces me to Orthodox Judaism. It’s alien, so different from the Reform version I’ve known, but I love the structure, the myriad rules (and loopholes!) for every aspect of life. No need to chart your own course. And I think this may be the answer to my confusion and self-doubt—to the bewilderment brought on by divorcing parents, budding sexuality, and being grievously disabled in an overachiever milieu. “I want to keep kosher,” I declare to Mom one day.

  She’s harried, post-separation. She’s been looking for work, getting only short stints here and there. She’s furious at Dad for abandoning her, for finding new love when she can’t, or won’t, and for looking so good in his forties. Why do men get better looking while woman fall apart?, I’ve heard her ask no one in particular. I don’t realize my turning kosher will make more work for her, cost more money. But she knows exactly what’s involved, even though she hasn’t kept kosher since Grandpa Sam died, when I was about five.

  Needless to say, Mom is less than thrilled. Yet she goes along. As a compromise, she buys me a glass plate. We’re pretty sure glass is nonporous and so can be used for both meat and dairy (though not, of course, at the same time or within three to six hours of each other).

  I thrive on the rational authority of the six-hundred-and-thirteen commandments. I get Alec to go along, to a degree. On Friday afternoons, before Shabbat, he pre-tears toilet paper and loosens the refrigerator lightbulb so it doesn’t turn on when opened. I can’t actually tear my own toilet paper or open the refrigerator, but it wouldn’t be right to have someone else break halachic code for me! We set timers to turn lights and the TV on and off during Shabbat—there’s a new Saturday morning Star Trek cartoon I can’t miss—and give up Chips Ahoy cookies for pareve Stella D’oros. I stop driving my electric wheelchair on Saturdays and, though I’m rarely up for going to synagogue, I start wearing tzitzit and a yarmulke everywhere.

  “What is this crap?” is Dad’s reaction. He smiles after he says it, but Dad is a modern, intellectual Jew who prides himself on getting away from “all that atavistic, Old World nonsense.” You should hear him on the Hasidim! “Do they want to go back to the Dark Ages?” Barbara, who’s Catholic, has a hard time with the minutiae but she’s had her own bouts of religious zealotry and is less antagonistic. In college (which was only about five years ago) she even contemplated becoming a nun.

  To my parents, it may be only an “adolescent phase,” but for me Orthodoxy’s rigidity is directly linked to my own strict life. I derive strength from the clear-cut, unwavering severity, which I’m accustomed to from my disability. Planning and intellect over emotional whim and spontaneity. Brain over body.

  One glorious release from this rigidity, so to speak, is masturbation. Whether kosher or not, I indulge nightly. I have zero privacy but try to keep it secret. One midsummer weekend I go with Dad and Barbara to the Jersey Shore, where I eat nothing but fried fillet of sole—fish because I believe it fits kashruth, and fried sole because that’s the only fish dish I can stand. While pushing my manual wheelchair on a quiet path, having left Barbara behind at the motel pool, Dad says, “Tell me, Ben, are you able to . . . reach yourself?”

  It takes a moment to understand. I resist the giggles. Really, I’m delighted. So nobody’s caught on?

  Here’s how I’ve been keeping my nightly ejaculations private and undetected: First, I ask to sleep on my back, though I can’t actually sleep that way. I ask to have my hands laid flat on either thigh. I say it’s more comfortable that way. Then I say goodnight and the light’s turned out, the door partially closed. I have just enough hand strength to do what I need . . . After, I wait for the spew to dry before calling out to roll over.

  “Yes. No problem there,” I’m saying as Dad rounds a turn. The Jersey Shore is a sexy place. Lots of skin, and a certain casual attitude. My imagination gets a little carried away. “Now, Dad,” I say, “can I ask you something?”

  “Fair enough.”

  “What would you do if I said no, I can’t?”

  Of course, I’m hoping he was going to offer a prostitute to break me in. A warm breeze blows and seagulls caw. Dad laughs. “It’s a good question!”

  ***

  On the long car ride home, Dad asks me trivia questions to pass the time. Literature. World capitals. History. Simple math. I’m a disaster! No, Spain is not the capital of Italy! Boy do I get shit for that blunder. I haven’t read the books Alec has, haven’t studied the subjects. Blame my weird school. Or maybe I am just dumber. So as soon as I’m home I tell Mom I want to transfer for high school. She consults by phone with Dad a few days later, and in the end they don’t argue with me. They’ve seen the problems at Walden.

  When it comes to equal access, we learn, schools haven’t changed much. It’s 1976, and the Education for All Handicapped Children Act has been on the books only a few months. The new law harks back to a 1972 court decision in Mills v. Board of Education. Not as famous as Brown, but similarly significant for the disabled. Basically, the court ruled that the District of Columbia could not exclude children with disabilities from the public schools.

  Nevertheless, here in Manhattan, the old barriers and prejudices remain. Excuses are made—Walden is famous for not giving letter grades, only teachers’ comments, leaving other high schools free to claim they have no basis for evaluating my abilities. I begin to doubt them myself. Watching preppy kids lug heavy books through the cavernous corridors of Dalton School on the Upper East Side, for instance—Dad foots the bills for our education; he complains about money but always seems to have it, and when Alec and I ask him years later how he afforded private schools on an editor’s salary, he merely shrugs and says he doesn’t know—and talking about requirements and prerequisites with administrators who look like librarians in their cardigans and bifocals (the teachers are a bit scruffier), I begin to fear I’m too far behind to function at a “better” school.

  Mom sends me to an education guidance counselor, who evaluates my skills and recommends a small school on the Upper East Side called Rudolf Steiner. Time passes, but ultimately I’m accepted sight unseen.

  Just when I think it’s all set, nature throws us what’s now called a game-changer.

  ***

  Dad and Barbara plan to move to a house in Stamford, Connecticut, where there will be room for the new baby. There is great excitement in the air. Barbara is pregnant! The house is being built! It’s an opportunity I don’t want to let pass. I’ve always wanted to live in a house instead of an apartment. Besides, New York City in the mid ’70s is depressing, dangerous. What’s more, Mom’s not as fun as Dad and Barbara, not as upbeat and adventurous. She’s been struggling to find a job and a man she can stand. Only I put it in better words when I finally muster the courage to tell her I want to move out and live with them.

  “Are you sure?” Mom asks. Then: “Have I been so—? No. Never mind. Um, won’t you miss Alec?”

  I haven’t thought of that. Alec? No, I guess not.

  Yet having spoken my fantasy I’m suddenly not so sure about it. Dad is able to do more with me than Mom, better at tending to my physical requirements. That much is true. Yet Mom is more emotionally supportive. Even now, she suggests I see a psychologist to discuss this. Reluctantly, I agree. She has in mind a specialist named Dr. Friend. (I kid you not.)

  ***

  “You’d be crazy to move now!” declares Dr. Friend several weeks later, after I I speak my piece. A genial fellow with tufts of silver hair framing ample ears, he sits in a big black leather armchair by the window of his elegantly furnished suite off the lobby of an apartment building on Central Park West, a few blocks from home. Mom and Dad both promised he wouldn’t tell me what to do, just help me make up my mind.

  “Is—is that what you think?”

  “Look,
you’re starting high school, which is big. Life is best taken a step at a time. Don’t overwhelm yourself, particularly considering your upcoming surgery.”

  I don’t want to think about that.

  My scoliosis has become worse to the point of dangerous. The miserable back brace isn’t working. I can put off an operation only so long.

  When my attendant picks me up at Dr. Friend’s office and pushes me home along CPW on what’s turned into a blustery spring evening, almost immediately I decide to disobey the shrink.

  CHAPTER FOUR

  MY UNFORTUNATE, LIFE-CHANGING INCARCERATION

  1976-1978

  “Slow and steady wins the race.”

  —Aesop, “The Hare and the Tortoise”

  My first day at Steiner, no one is expecting me. Housed in a converted townhouse on East 78th Street between Fifth and Madison avenues, the school is like a disheveled Old World dowager. It’s warm and nurturing yet smells of mothballs.

  I’m the first and only wheelchair student ever—pioneering, again!—and nobody’s checked if the elevator is working. It’s very old and arthritic, we’re told. Like at Walden, Dad has to jerk my chair up the front steps, but we’re used to that. Beggars can’t be choosers. Inside is another story. We hadn’t reckoned on an elevator problem.

  The tiny “car”—a cargo elevator, if ever there was one—refuses to move from whatever floor it’s on. When someone at last finds it and manages to open the tarnished old gate, my chair doesn’t fit inside. I’m about ready to give up, whatever that means, when Dad removes my footrests and finagles till my chair and I are wedged in. That said, there is no extra space for another person to push the buttons, which I can’t do myself. So long-legged Dad vaults the staircase to summon the elevator to the third floor. Still the rust bucket won’t budge, until—honest to God—someone kicks the door from the outside!

  Needless to say, I’m now late for my first class.

  All of which gives me plenty of time to size up the people I’m hurriedly introduced to. So far, all the men wear the drab, narrow-lapelled suits of a previous generation; the two women in evidence are in navy pencil skirts and prim cream-color blouses that’ve seen better days as well. An odd sort of shabbiness, considering the affluent location, pervades. And not the hippy-dippy grunginess I’m used to from Walden.

  My homeroom teacher—young, blondish, in a blousy neutral-toned dress shirt, conservative polka-dot tie, and comfortable shoes—interrupts his presentation to the class when I’m at last wheeled in. “Yes? Hi! Mattlin? Are you in the right class? Ninth grade? It’s just that we weren’t expecting you…”

  No shit? I smile and remain silent. The other kids—roughly fifteen in all, I estimate—are staring at me from behind identical front-facing desks. (I’m relieved to notice no ties or blazers—a dress code somewhere between Walden’s “anything going” and Alec’s school’s “young executives in training.”) Most are girls, actually. Much whispering ensues between the teacher and the swarm of 1950s-style administrators and others who’ve gathered. The source of the confusion is apparent, to me at least. I am the cause. I’m not supposed to be here. I’m supposed to be in Stamford.

  Yesterday, I awoke to the darkness of 5:30 AM in Dad and pregnant Barbara’s West End Avenue apartment (they’d moved from Brooklyn several years before), got in Dad’s minibus-sized overcooked-broccoli-green Checker Marathon—the roomy “Limousine” edition, which could hold my wheelchair intact, without folding or removing the foot rests, if I ducked my head (and which Barbara, an opera buff, had dubbed Brunhilda)—and did the long reverse-commute to Connecticut. The house they’re having built in Stamford isn’t finished yet, and I didn’t want to miss the first day of high school there. Rippowam High turned out to be a sprawling suburban campus of about a thousand students, quadruple the population of Walden’s high school and about fourteen times Steiner’s, spread out on a single floor. It’s a public school, but it’s supposed to be a good one. It’s also pretty accessible. I’d roamed class to class in my motorized wheelchair, something I’ve never done before. But I got lost and my chair is slow, so I struggled to keep up. Many of the other kids already knew one another . . . and they’d looked different from kids I’ve known. What’s more, outside the windows was nothing but trees and grass. You could hear birds, not car horns and sirens. So alien to me!

  When my latest attendant, Kenny, brought me home to Manhattan’s Upper “West Side that afternoon, I was despondent. “How many trees can you stand?” I shrieked.

  The realization: I am a city boy.

  But I had a second chance at reinventing myself and finding happiness. Rudolf Steiner started one day later than Rippie. Why not give it a try, too? My parents agreed. What I hadn’t realized is they never actually told Steiner about this second change of plans. They didn’t have time.

  At Steiner, the brouhaha soon settles down and I’m parked behind a desk at the end of the front row. Dad leaves. I struggle to learn the name of the girl on my right. She’s pretty, and I figure if we’re going to be neighbors we might as well be friends. The new me is as shy as the old me, however. The new me is still a work in progress.

  The teacher re-begins his remarks. He’s a broad-shouldered, slightly potbellied man, and his fair locks hang diagonally in a . . . well, a Hitleresque slant toward his bushy eyebrows. I’ve missed the part where he gives his name.

  At lunch the other kids make a special effort to welcome me. “So what’re your hobbies?” I’m asked probably six times. I become self-conscious about their solicitousness, but seize the opportunity. “Our teacher—what’s his name?”

  My question elicits giggles. A girl with flaming red hair and an expansive smile says, “Isn’t it funny? German, I guess.”

  I wait. Then, in a hesitant, enchantingly soft voice, she says, “A Hard Penis.” At least that’s what I think she says. I nod knowingly, or try to as best I can, betraying no embarrassment. My head doesn’t actually move much, so I sort of raise and lower my eyebrows, playing it cool. I’m good at using facial expressions to my advantage.

  On the third day I have a pressing question about a homework assignment. I can’t raise my hand. I raise a finger, but will have to call out. Maybe I can get by simply saying “Sir.” No. Too formal. I decide to be brave. Perhaps if I say it fast enough, emphasizing the initial syllable and slurring the rest, I can get by. I’m good at fooling people. “Uh, Mr. PEEEN-ih—?”

  He looks over. No one chortles. Maybe his name really is Mr. Penis.

  There are a lot of funny names here. Kids called Almira and Bethea . . . at least I think I have those right. I hurriedly ask when book reports are due, and we go on to a lesson in recitation. Recitation is big here. Every morning starts not with the Pledge of Allegiance but with Steiner’s own Morning Verse, which I soon learn. “I look into the world, in which the sun is shining, in which stars are sparkling, where stones repose …” The class speaks it in unison while standing up—slowly, reverentially, like some secret, ancient chant.

  English class begins with a passage we’re supposed to recite: “Respect for the word is the first commandment in the discipline by which a man can be educated to maturity—intellectual, emotional, and moral. Respect for the word—to employ it with scrupulous care and an incorruptible heartfelt love of truth—is essential if there is to be any growth in a society or in the human race…”

  I sort of like that one. I’ve always had respect for scrupulously employed words! I become engaged in the lesson, and soon realize this oddly named teacher and eccentric, quasi-cultish school are growing on me. I made the right choice, coming here, staying in New York. I never think about moving to Stamford again.

  Mr. Penis writes the name “Dag Hammarskjold” on the board. I only know it from the plaza near the UN. Someone then asks him to spell out his own name on the chalkboard. Thank God! Why couldn’t I have done that?

  He writes: EKKEHARD PIENING.

  It’s the autumn of 1976. Jimmy Carter is runni
ng for president against Gerald Ford. I’m convinced Carter will lose, because who would vote for a Southerner with blow-dried hair? “Shake Your Booty” by KC and the Sunshine Band is the top hit. I’m trying to be into what’s happening now, and swear off talking about Star Trek as if it’s real, though some of the popular disco music leaves me cold. I won’t pretend I’m Chief Ironside or even the much cooler Steve McGarrett anymore. I spent last year signing “Steve” to my homework papers at Walden.

  On the other hand, I don’t want to be just Wheelchair Guy either. I like having a counter identity. If I can do something else—such as make my new classmates laugh—perhaps I can go from Wheelchair Guy to Funny Wheelchair Guy and, in time, to just plain Funny Guy.

  I start doodling cartoons between classes and sometimes during classes. A few weeks later, the student paper publishes one. It’s a caricature of Carter, Ford, and—what the hell—Nixon at a fictional debate. Nixon says, “I am not a crook.” Ford says, “New York, drop dead.” And Carter says, “Anybody want a peanut?”

  I’m doing my best, but I’m fighting impossible odds. I’m still fat and wearing an uncomfortable back brace that makes my clothes fit funny. I take to holding my bathroom needs till I get home, on the assumption I’m too old to ask teachers for that kind of help. On occasion I have accidents, concocting clever excuses and misdirection. “I spilled my drink!” Or “What’s that smell? Did my chair run through dog doo in the park?”

  Soon medical imperative blows my cover.

  ***

  My curving spine has overpowered the pinching back brace. My weak muscles can’t keep up. My back has nearly folded over itself. I look more like a beach ball than an almost-fifteen-year-old boy. And the orthopedist says the situation has become critical. Without surgery, and soon, breathing will become increasingly problematic as my body closes in against my lungs. I’ll become unable to sit in a chair within five years. My parents have insisted on getting second opinions. Now three of New York’s top orthopedic surgeons agree.