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.

Part 6 of "Miracle Boy"

A friend has a clever blog about, most recently, idiotic comments from strangers about wheelchairs--specifically, about YOUR wheelchair. The one you're riding in. The one you depend on.

Anybody who's ever used a chair or been close to someone who does recognizes the kind of inane things he's talking about. Things like: "Do you need a license to drive that thing?"

Why, he asks, do strangers never cease to make such strikingly uncreative, annoying comments toward our wheelchairs?

Of course, such comments are not unique to wheelchair-users. Most distinguishing characteristics--tallness, shortness, large nosed-ness, other well-endowed body parts (!), excessively curly hair--are probably prone to it. Names that sound funny to people who aren't used to them are frequently made fun of, too. It's no big deal. There are more important issues to complain about, more urgent battles to fight.  Right?

But still, there it is. A small piece of what's sometimes called "disability culture."

So I'll refer you to Mark's blog, and then get on with my story...

Disability As A Social Condition: 1967-1971

I know they are discussing me, but I don't know why. I can't hear a word or see them to read body-language. They have closed the door. I'm on the outside, sitting in my wheelchair between a beige sofa and a beige armchair in the mostly quiet, fluorescently lit, antiseptic waiting room. I'm nearly six years old, and I have nothing to do.


Why didn't Alec have to come, to keep me company? Not that he would play with me. My older brother is nothing like me. A thin, spirited boy with straight dark-reddish-brown hair and a gap between his front top teeth, he's brainy and competitive, likes to play chess and baseball and go bowling. I, on the other hand, have big blue eyes and a mop of unruly blond hair, an adorable Cupid look. Mom's friends say they wish they had my curls, which I don't understand because I hate my hair. I want it to be straight, like I see on TV.


On Saturdays Alec goes to a sports camp while I watch cartoons, and in the summer a sleepaway camp in New Hampshire while I stay home and look for ways to pass the time.


Now, in the hermetic waiting room, I imagine leaping through the big, half-sunny window, kicking past the rattling glass and landing catlike on the street below just in time to chase away a squadron of bad guys. I'd roll on the ground to avoid their gunfire and then grab a loose drainpipe or tree branch and knock them all out till the police come …


I can pass a lot of time imagining highly athletic action scenes. But alas, I soon discover it's not enough time, and my boredom resumes. I can't hold up a magazine or book, and there's no table I can get to to roll my toy cars on if I had any toy cars with me.


Why do I have to go to so many doctors?


In truth, Dr. Spiro is one of my favorites. Every year, before the private parent conference, he examines me and talks to me in a soft, cheerful manner. He asks me to squeeze his fingers, follow his penlight with my eyes, stick out my tongue, feel the vibrations of his tuning fork against my knees and ankles (and tell him when the vibrations stop) and perform other easy tasks to measure my muscles and nerve responses. It always seems to impress him that I'm not stone paralyzed or retarded!


I like the attention. I don't mind being on display. It's best if I can stay in my wheelchair and not get lifted onto his hard, narrow examination table and have my clothes taken off. But either way—in my chair or on his examination table, dressed or naked—I try to put on a good performance. I'm famous for my good humor and bravery. I never even cry at shots.

[Stay tuned, dear reader…]