Part 35 of "Miracle Boy"

Thanks to all of you who responded to my request last week for examples of offensive, exploitative docudrama-slash-Reality TV portrayals of people with disabilities.

Here's the short list of what I've come up with:

1) "The Eight Limbed Boy," "Manar's Story: Born with Two Heads," and something called "My Shocking Story" that featured conjoined twins called "human spiders." (I kid you not!) All on FitTV.

2) "Born Without A Face: Five Years Later," about a child with a rare condition that causes bones not to develop. On FitTV.

3) "Mystery Diagnosis" has reappeared, from the late Discovery Health, on the new Oprah Winfrey Network. ... Recent episodes featured "the toddler that stopped walking," "the girl with no bowel," "the boy who only hopped," and "the toddler that went through puberty," to name a few.

4) FitTV also has several series about psychological disabilities ("Addicted to Food" & "Help! I'm A Hoarder)" and unusual pregnancies, which wouldn't be so bad except that "I'm Pregnant And…" frequently completes the sentence with "bipolar" or "may be having a dwarf" and similar disability-related terms.

5) The Learning Channel, another Discovery property, features "The Little Couple," which follows a couple of newlyweds for no obvious reason except they happen to be People of Short Stature a.k.a. Little People!

6) The problem is not unique to cable. A recent installment of ABC's 20/20 highlighted an amputee weightlifter … simply as an example of someone who defied expectations, I guess … which is another flavor of freak-show.

I welcome your reactions. For my take on these and other examples, you'll have to wait for my NPR commentary. No idea when that will be, though. My editor is working on getting clips from these programs to illustrate my points.

Meanwhile, here's the next installment of MIRACLE BOY…

The Recovery Room.

A tube is inserted in my nose. Maybe it's been there all day but I'm just now feeling it. It makes it hard to swallow my own saliva.

The room is dark and crowded. Lots of people on lots of beds, countless machines beeping and humming.

No TVs.

I float in and out of sleep. Well, of consciousness. I'm not permitted to see my parents until morning. I'm not sure I'll make it till morning.

I hear someone in another bed—an old woman, it sounds like—discussing the difference between "mottled" and "modeled." She's trying to explain a mark or a feeling on her skin and the nurse isn't getting it. I want to help. I'm good at explaining. Mom always says words are my strongest tool, and I have learned time and again it is so.

Respect for the word ...

But I can't help this poor woman across the Recovery Room. I can't get up and I can't speak. This must be what it feels like to be buried alive, I think.

I try to memorize everything that's going on around me, so I can put it in words later, in my notebook, but without my glasses I can't see and without my brain fully switched on I have a hard time stringing together pairs of sentences in my head. Forget paragraphs. Later, I think. I will write all this later.

But first I have to stop feeling like I've been run over by a Mack truck. Whatever a Mack truck is exactly ...

Big Mac.  Mack the Knife. Maybe that's better. Stabbed by Mack the Knife.


When morning comes, I'm thrilled to see light. Whether it's the fluorescent bulbs outside the Recovery Room or the summer sun shining through the windows, I can't be certain. Either way it's bright and new and I'm rolled out of the recovery room and I'm okay. Mom and Dad are there—here, coming up to my rolling bed. I'm transferred to another bed, one in the I.C.U., which is a big room with five or six patients near the nurse's station. Each bed has its own little Sony Trinitron color TV. Feels almost like being home again.

Dr. Levine visits. He says he was able to do the two parts of the spinal fusion at once, in that one surgery. We're ahead of schedule. "But your bones are like eggshells," he cautions. "You need more milk.  More calcium."

Later I'm given a small plastic plug to close off the trach so I can talk. It doesn't come to me right away, and I struggle and gasp until at last I can speak in small increments.

Whenever I feel pain, which isn't often, I'm given a dose of Demerol in my I.V. It's the most wonderful sensation I've ever experienced—a luscious, tingly warmth that spreads within until I fall blissfully asleep. Soon I have to cut back on the doses; requests for more receive a "can you wait a bit longer?" or outright denial.

***

Part 34 of "Miracle Boy"

Happy New Year! Crushing deadlines safely behind me, I'm ready to re-begin.

But first…

I'm looking for suggestions. Been working on a new piece for NPR about media images of disability--specifically, the way certain soft-news and reality TV programs portray people with disabilities as scientific oddities or "amazing but true" objects of medical curiosity--and I could really use your help.

You see, the examples I originally came up with were all from the Discovery Health channel, which ceased broadcasting at the end of the year. So I need new examples.

If you encounter any, please e-mail me pronto. The best way to reach me is at bmattlin@earthlink.net

One more thought: Is it just me, or has the time finally come to call the year "twenty-" etc. instead of "two-thousand-" etc.? That is, can we call the new year "twenty-eleven," not "two-thousand-eleven"?

It's a lot simpler, at least to my ear.

Actually, this has been a pet peeve of mine for some time now. I've been waiting for the right moment to happen. I've wondered, when would the changeover occur?

At last, a possible answer: Now!

Why now? Let's face it, "eleven" is just too long a word. It has three syllables!. So altogether, "two-thousand-eleven" is six syllables. "Twenty-eleven," on the other hand, has only five. See? Simpler.

One thing, at least, is clear: I've been on vacation too long.

MIRACLE BOY GROWS UP, continued

In the months that follow, I feel I'm making a little history myself—or at least approaching a Big Event. The hospital days in April were just preliminary. The Big Event is this summer's surgery.

No one has ever spent a summer in a hospital like I'm going to spend the summer in the hospital. There will be a series of operations culminating in a spinal fusion—which will attach pieces of metal called Harrington Rods to my pretzel-like spine. The rods won't make me completely straight but significantly straighter, which is the best we can hope for. I'll be in the hospital for three or four months, with a two-month interval at a rehabilitation facility. In all, six months under institutional medical care. Summer and fall. Or so goes the plan.

It's enough to make an ordinary teenager crumble, perhaps, but not me. This is my big battle, the travail I must endure to achieve stature, literally. I'm Ben-Hur facing the Roman galley ship. If he can row for three years, I can lie in an institutional bed for six months. In characteristic fashion, macho fantasies come to my rescue.

At Mom's urging, I start scribbling my fears and expectations in a notebook. I will keep a journal before, during and after. At the very least it gives me something to do with my pent-up energies, at once a focus and a distraction.


I began wondering what I might actually lose from gaining a straighter back, and experiment in the bathtub with auto-fellatio.


Contact!


A dirty little secret of the extremely scoliotic! Yet I come away without a clear understanding of what all the fuss is about blow jobs.


When school's out, in early-June, I have a couple of weeks free and arrange to see Star Wars with a girl from school, my first half-assed attempt at a date. We get our signals crossed, however, and I become impatient waiting for her to call back. I end up seeing it alone and don't enjoy it. My pre-hospital time feels too precious to waste on waiting around for the phone to ring. Sorry, babe.


Finally, I am again admitted to a private room in pediatrics. For the first few days, more tedious tests—X-rays, blood panels, whatever. Every time I pee it's measured, and when I don't a nurse asks me if I want to. They expect you to piss every hour! Then I get a preview of my coming traction, so to speak—a system to stretch my spine mechanically over the course of a week before the rods are actually inserted. It sounds laughably primitive, but Dr. Levine insists it's necessary and he's done it hundreds of times. Or I should say, he's done it to hundreds of other patients. He even produces a past patient as a sort of reference, I suppose, and to cheer me up and reassure me that this is not the end of the world. Thanks, Doc.


I'm awake when Levine drills holes into my skull—the first step of traction. I've been injected with a local anesthetic, and I feel nothing. Then a heavy metal ring is installed on my head—actually screwed into my cranium. They call it a halo. But aren't halos supposed to be light as air, luminous and ethereal? This is about as light as an iron.


A matching set of metal pins is installed near my knees. Again, "pins" is a misnomer. Pins are small and narrow. These are not. These hurt like hell. They are metal dowels that, like the halo, go through the bone; they stick out on either side. I complain for days about my right knee in particular. It throbs so much Dr. Levine decides to redo that portion. He moves the pin a centimeter or two. It's still sensitive to the touch but less painful most of the time.


Cords are tied onto the halo and leg pins, attached to pulleys with a weight at the other end. Yes, I'm being drawn and quartered! I'm lying on my back all the time now. My upper body may be elevated slightly, but the idea is to keep my spine straight. This goes on for about ten days, during which it's impossible to keep my journal. I'm again glad for the Sony Trinitron. I think I learn every episode of the Mary Tyler Moore Show by heart.


I try dictating to a small tape recorder, but it's not the same. I listen to music cassettes through an earphone, mostly Beatles. Which is not in keeping with the zeitgiest, of course, but since I was too young to fully appreciate the Beatles in their time it's not exactly nostalgia either. Besides, sometimes the coolest thing to do is not follow what everybody else is doing. I'm beginning to learn that.


In any case, no one from school will know.


When Mom and Dad visit—usually on alternate days—they bring me more Beatles cassettes and other music I request, such as Aerosmith, which I'm just starting to get into. Alec is in England and France with a high-school tour group. He promises to bring back British versions of Beatles LPs.


The day of the big surgery, Mom and Dad appear together very early in the morning, for pre-op. I'm sedated. It doesn't make me sleepy. It makes me giddy. As I'm being rolled off toward the operating room, I tell my parents, "I have one question. Before he cuts me open, I need to know if he's a kosher butcher!"


They find this hysterically funny. Dad laughs like a seal. He pats my foot, which is under several layers of sheets. He's always patting me. Mom shakes her head and says how very funny I am. Grace under pressure, she says. Not really. It's more a burnished reflex. Make light of a difficult situation. Find the humorous side of it. Put people at ease.


The lights in the O.R. are very bright. I want sunglasses. Instead, I meet the anesthesiologist. A face behind a surgical mask. He asks me to count backward from one-hundred. I get to ninety-six.


When I wake up, I'm being lifted by a gang of a half-dozen or more in surgical outfits. Lifted from one bed to another. There's a pain in my lower back, near my waist. I try to say "My waist! My waist!" but no words come out. I have a tracheostomy. Dr. Levine had explained this. I was likely to come out of surgery with a buildup of fluids in my lungs, and since I'm unable to cough, a tracheostomy will allow the doctors to suction out the gunk from my lungs. So for now I cannot speak.


Dr. Levine sees that I'm trying to talk. He tells the others to stop. He leans over me, and I can make out his rosy-cheeked face, his red curly hair, his clownish bow tie. I don't have my glasses on, but these things are unmistakable. "What is it? What're you trying to say?"


I like Dr. Levine for trying to understand. Yet I'm too dazed to think up an alternate explanation, a suitable vocabulary. I keep mouthing My waist, my waist. Finally he gets it. He feels under me, around my waist, but finds nothing wrong. "See if it gets better. It should go away." (It does, but I don't notice when.)


The next twelve hours are the most horrifying.

***



Part 33 of "Miracle Boy"

Under deadline pressures, so without further ado –

***

She says she can see my room out her window, but I don't see hers.

She has a tumor removed from her ovaries. She's forty-three, scared because ovarian cancer is what killed her mother. I'm convinced she's worrying over nothing. She usually does. Mom calls her operation a "procedure." What we don't know is it'll be the first in a long series of procedures.

One afternoon, accompanied by a nurse, Mom drags her I.V. over the bridge connecting the two buildings and visits me in pediatrics. She's weak and pale but tries to be cheerful, and I do too.

We're also unaware that, that same April, disability activists are protesting at federal office buildings in ten major cities. The Rehabilitation Act of 1973 still has not been signed into law, four years after Congress passed it. Specifically, the guidelines necessary to enforce Section 504 of the Act, which bars discrimination against people with disabilities in federally funded programs, haven't been finalized. Without those guidelines, the nation's first disability-rights legislation is rendered meaningless.

Protesters believe newly installed President Carter may be sympathetic to their cause, but so far he's done nothing.

The San Francisco demonstrations are the largest. Scores of activists occupy the local headquarters of the U.S. Department of Health, Education and Welfare, the body responsible for the guidelines. They camp out for twenty-five straight days and nights, sleeping in their wheelchairs or on the floor. They share urinals, catheters and personal-care attendants, bathing in front of each other without shame—most are used to being undressed in front of others.  I know the feeling. 

These activists are inspired by the Black civil-rights movement, of course, but more than that, they have nothing to lose and nothing else to do. They're unemployed or, in many cases, barred from all but a handful of mainstream schools. Having benefited from the latest medical advances, they've survived crippling, once deadly, diseases and accidents to live active lives with the aid of crutches, power wheelchairs, portable ventilators, guide dogs, sign language and other modern marvels. Many don't have their own homes or families to tend to. They feel they've been patient long enough.

At the end of the month the protesters are victorious! Joseph Califano, Carter's H.E.W. secretary, finalizes the regulations and the president signs them into law. A modicum of rights, at last! Power to the people!

It will prove only the first battle of a long war, of an ongoing revolution, but it's one from which I'll personally benefit very soon. For all institutions that receive federal funds are now required to become accessible by 1980. The year I start college.

***

Part 32 of "Miracle Boy"

 

Happy Thanksgiving to all!

I've been working on a new NPR commentary for the impending holiday season, and have set myself a personal goal of doing even more next year than I had the pleasure and privilege of doing this year. We shall see…

Meanwhile, my financial journalism continues apace (whatever that means).

And one of the three publishers passing judgment on my humble book proposal has given it a thumbs-down.  Yet I shall remain hopeful about the other two.  They have the new-and-improved version, which the naysayer didn't.

In other news, the excellent writer Mary Karr has come down hard on recent statements by controversial writer James Frey, author of A Million Little Pieces.  Who, in New York magazine, said something recently about the blending of fiction and nonfiction in modern literature.  Karr does not believe in confusing the two.  "Hey Frey: if you can't tell the truth and you lack imagination to make up stories, maybe scribbling just ain't for you," she proclaimed to her Facebook fans.

She's right, of course.  But honestly, memoirs like hers (Lit, Cherry, The Liars' Club), and the one I'm working on, are not biographies nor works of journalism.  They should not be taken for reporting indisputable facts.  A memoir is necessarily subjective--the author's version of events.  Right?  So what you read here is my take on what I remember … thus, it's highly filtered. 

And to make it more readable, I do try to use some of the techniques of a fiction writer.  So the pacing is artificial, that is, contrived as a work of art.  What's included and what's left out is artificial, too, in the sense that the decisions are based on my own sense of what's relevant or interesting.  But the situations depicted, and my experiences of them, are completely based on fact.  I haven't made up any characters or scenes.  Though, of course, anyone else who lived through these events probably has a completely different memory, interpretation, and story.  Does that make sense?

Anyhow, without further ado, here's the next installment –

###

It's the autumn of 1976. Jimmy Carter is running 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, such as there were 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. The surgery. 

***

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.

We pick Dr. David Levine of the Hospital for Special Surgery, which is on the Upper East Side. He seems the most responsive to questions, even from me, and I like his sunny manner. His penchant for bowties is either a plus or minus—I can't decide.

To prepare for next summer's surgery, I spend the better part of spring break in the hospital for tests. I'm given a private room in the pediatric ward. Disney characters are painted on the walls. Come on, I'm nearly fifteen!

Out my window you can see the East River. The hospital is on prime real estate! Mostly I like the small Sony Trinitron color TV on a pivoting gooseneck over the adjustable bed. I can't change channels myself, but at least I can pick what and when to watch and ask a nurse for help.

For five days I undergo a litany of tests—breathing tests, blood tests and so forth. I try to find the bright side, look at the nurses as sex objects, because that's what the cool guys at school would do, but I'm too busy taking it all in and being bored to float any pleasure.

While I'm there, Mom checks into New York Hospital, which is adjacent.

Part 31 of "Miracle Boy"

I have a second chance at reinventing myself and finding happiness. Rudof Steiner starts one day later than Rippie. Why not give it a try, too? My parents agree. What I didn't realize 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. It worked!

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.

Very spooky.


English class begins with two passages we're supposed to memorize. "In the beginning was the word ...," Mr. Penis enunciates for us to repeat. What happened to, "In the beginning God created the heavens and the earth"? I'm in the presence of goyim, but this isn't Connecticut and they're in the minority.

Then, a few days later, comes: "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 U.N. 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.

***

Part 30 of "Miracle Boy"

So far, all the men at this Steiner high school 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 blousey gold-color dress shirt, conservative polkadot 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, like Walden, not like Alec's school.) Most are girls. Much whispering ensues between the teacher and the swarm of 1950s administrators and others who have gathered. The source of the confusion is apparent, to me at least. I am the cause of the commotion. 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 moved from Brooklyn several years before, when the strain of walking up two flights became too much), got in Dad's minibus-sized red Checker sedan—which had room for my motorized wheelchair, if I ducked my head—and did the long reverse-commute to Connecticut. The house they're having built in Stamford isn't finished yet, and I don't want to miss the first day at Rippowam High School.

Rippowam turns 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 roam from class to class in my motorized wheelchair, something I've never done before. But I get lost and my chair is slow, so I struggle to keep up. Many of the other kids already know one another ... and look different from kids I've known. Athletic? Outdoorsy? Suburban? Gentile? Something!

What's more, out the windows are trees and grass. You can hear birds, not car horns and sirens. Charlton Heston's monotone resonates in my head: "I am a stranger in a strange land."

When my latest attendant, Kenny, brings me home to Manhattan's Upper West Side that afternoon, I'm depressed with severe misgivings. "How many trees can you stand?" I shriek.

The realization: I am a city boy.

***

Part 29 of "Miracle Boy”...goes to high school

Thanks to all of you who have written to me in response to this blog and other things I've done.

Thanks for voting for items below, and for my first YouTube comment.

(These humble entries are now receiving about 15 views per day, or close to 500 visitors a month. Not bad!)

My proposal is now in the hands of three or four book editors (I've lost count). I've published articles in each of the past two issues of Financial Advisor magazine, and a new one is in the works.

And NPR is awaiting my next commentary, which I'm hoping will run before the end of the year.

But of course, none of this is certain. None of it is money in the bank. Well, a little, but not much money.

In the manuscript segment that follows, we start the final chapter that's completed so far. Honestly, I'm wishing for a book contract to keep me working on it--so far, it's all been on spec--but I doubt not having one can stop me now!

Well, barring further development, here's the next installment . . . .


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. Who could resist?

***

"You'd be crazy to move now!" declares Dr. Friend several weeks later, after 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 down 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 only put off an operation so long. The sooner the better.


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

Chapter 3: My unfortunate, life-changing incarceration

1976-1978

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 mothball smelling.


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.