Part 16 of "Miracle Boy”

I admit it. This next section borders on the fictional.

I figured if Frank McCourt could tell the story of his own CONCEPTION, in Angela's Ashes--that archetype and epitome of the modern memoir--well, this was fair game.

At least I'm not including the dirty bits!

Read on (even sans dirty bits)!

Chapter 2:

Divorce, bar mitzvahs & preadolescence—
Wasn't my life hard enough?

1972-1976

Over Thanksgiving weekend 1955, my parents meet. It's a blind date set up by Everett's cousin Burt. Everett is twenty-seven, visiting home—Columbus, Ohio—from Los Angeles, where he's been since graduating magna cum laude and Phi Beta Kappa from Harvard five years ago. 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. 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 L.A.'s beautiful but intellectually mediocre women.

He ventures to Paula's Cincinnati home—a tidy, cramped one-room apartment—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. 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 restaurant, chosen on good authority from Cousin Burt, 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 L.A. girls!

Three weeks later they set a wedding date— 

Part 15 of "Miracle Boy”

BUT FIRST, a few introductory thoughts:
A Harvard pal who's just published a book tells me, "You don't need a blog to sell a book."

Well, I think, maybe YOU don't. But I seem to.

Then again, she makes me realize something. This blog-to-book thing could just be a fad, a passing trend. It's worked for Julie Powell's Julie and Julia, and Sh*t My Dad Says by Justin Halpern, and even, in a way, the I Can Has Cheezburger? series. But that doesn't make it a rule, does it? Surely there's no requirement, no law, that says you must go this route.

And like most media types, the editors I've been encountering are simply hopping on the bandwagon. Just as, a few years ago, they might have said, “Write about vampires!” or, a few years before that, “Wizards! Especially young wizards. That's the thing!" Or a few decades earlier: "Teenagers and drugs!"

Getting into online media is a lot easier than getting before TV cameras. But that doesn't make it right or necessary. Does it?

What do you all think? Is there another, better way to prove I have an audience for my humble words?

I'm extremely grateful for and humbled by the number of you who do read this. But in truth, I'm certainly not generating the kind of numbers that a publisher would want--which I imagine is something daunting like several thousand.

Puh-lease! To do that I'd have to upload something pretty outrageous or scandalous. Something that really has no connection to my book idea at all. So what would be the point?

Is blogging and Twitter stuff and all just a passing fad?

Please share your thoughts.

Meanwhile, just in time for Labor Day, here at last is the next installment of MIRACLE BOY --


. . . 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 muscular dystrophy ads and quite another in my daily life. My disability may be measurable by 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 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 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 drawers. "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. 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.


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.

***

Part 14 of "Miracle Boy”

Two weeks later my photo appears in the Daily News, another paper my family never gets but we do this time. 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 even invited to appear in the New York studios during the next Labor Day telethon, but still never meet Jerry. I meet the hosts of TV's Wonderama, Sonny Fox and Bob McAllister, at a later fund-raising event, but that's about as exciting as it gets.


When I'm eight, I pose for a full-page magazine ad "standing" in uncomfortable leg braces under the 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. Sure, I want to be famous but don't spread lies about me! 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 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 visualize a secret laboratory and computerized panels in an attempt to communicate by E.S.P. my true desires. 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.

***

Pre-Adolescent Stripping, Santa Claus and MDA: Part 15 of "Miracle Boy

It's been a busy week here at casa Mattlin. (Chez Mattlin? Whatever.)

I'm under deadline for Institutional Investor, among other things.

Anyway, without further delay, part 15 of "Miracle Boy Grows Up"...

Naughty and Nice

***

The "Naughty Bits"

By now Joanie and I are considered girlfriend and boyfriend.


At my apartment, in my tiny bedroom, when and where no one else is around, we decide to undress.


For me the most burning question is, how? How to manage it logistically?


Under the pretext of needing a nap, I ask Inez, our housekeeper, to lift me out of my wheelchair and put me in bed. Inez is the only one home besides Joanie and me, but somehow it still feels like we're done.

Once Inez has left the room, Joanie closes the door and I instruct her how to open my jeans. She knows how, of course, but I feel she needs encouragement.


"I can't unbutton them myself," I explain matter-of-factly.


She insists on going first, and begins to lower her jeans and underpants. I try to look but can't—I'm not sure what I see. Then it's my turn. To my surprise she says no. Fearing she's merely being bashful about helping me, I try my usual brand of reassurance. "You can do it. It won't hurt or anything."


I don't think about the implications of her actually touching me. We're just having fun, sharing. She continues to say no and I give up. Inez puts me back in my chair and we play ordinary board games. But it's clear: I'm not going to let my handicap get in the way of my romantic life any more than I let it detour my education or anything else.


It's a lesson I'll carry with me long into adulthood, when it really matters.

***

In 1968, the Muscular Dystrophy Association of America's Labor Day telethon is broadcast outside the New York metropolitan area for the first time. Launched in the early-50s as an occasional four-hour fundraiser on a few New York television stations, it became a 19-hour star-studded TV event on Labor Day 1966, though still within tight geographical boundaries. In 1969, when I'm seven, I'm invited to be its poster child.


We think highly of the Muscular Dystrophy Association in my household. It tells us about my spinal muscular atrophy, what to do to keep me healthy. Mom and Dad say it helps pay for Dr. Spiro, my neurologist. Someday it might find a cure so I can walk, they say.


On a fall Saturday afternoon Mom takes me to a studio downtown—a large, mostly empty windowless space. At the back, under very bright lights, a quiet girl a few years older than I am stands awkwardly with the aid of crutches. She has short, dark hair and wears a short green pinafore dress that exposes leg braces. Mom says she's the outgoing model. I should speak to her for tips about what it's like to be a poster child.


I watch silently. The girl doesn't do much, just stands there as a camera clicks. Then a man in a suit waves for Mom to bring me over. I'm parked in my wheelchair next to the girl. Mom walks away. A fat man in shirtsleeves starts snapping photos of the two of us. Am I supposed to be doing something? I squint at the bright light. After a while, we're told we're done.


Is that 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.


In December I'm asked back. I'm to be photographed on Santa's lap. I'm beginning to have doubts about Santa—after all, I'm seven now—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. Every year Dad takes Alec and me to see Santa at Macy's or Gimbels, and Santa always brings us presents. I'm not sure how he gets in since we don't have a chimney, and he couldn't get past the doorman and elevator men without being announced. Probably lands on our tiny terrace and comes in the glass door or a window. That's all Alec and I know about Christmas—what we learn from the TV specials. Nothing religious. We also celebrate Hanukkah and the other Jewish holidays. But a number of things about Santa just aren't adding up. For instance, there was the year I requested a Johnny Lightning racetrack and I got a Hot Wheels set instead.


For the photo shoot, I'm put on Santa's lap and told to smile. Finally some instructions, some direction! I plan to tell Santa one gift request and my parents another, as a test. Yet in all the hubbub of clicking cameras and bright lights I forget to ask Santa for anything. I'm still not sure he's the real Santa, but Mom says this will count as my Santa visit so I'm not taking any chances. I tell Mom I blew it, I forgot to ask Santa for anything, and she says I can tell her what I was going to ask for and she'll pass the word on to Santa. I still want to test if Mom is really Santa. "No, it's a secret," I say.


The friendly man in charge overhears me and offers to be my messenger to Santa. He smells nice as he leans over me, letting me whisper in his ear, and promises not to tell Mom. But later, as we're getting ready to leave, I see them talking.

###

(Hey, please leave a comment below. Let's get this party started! 
Till next time, thanks for reading.)

For Paul Longmore, in memoriam: Part 14 of "Miracle Boy”

This next, short passage is dedicated to my good friend and guru Prof. Paul Longmore, who I've just learned died yesterday. Suddenly, unexpectedly. He'd become a sort of celebrity in the disability-rights movement, but he was nothing if not unfailingly friendly and personable and supportive and warm, too. I had read of him before I'd met him. That was 20 years ago or more. He was a historian and polio survivor who educated me and hundreds of others about disability history--the role of people with disabilities in history, perhaps I should say. He imparted a sense of shared culture and pride, and a sort of vision for the future. He was also a pal, a wit, a provocateur. He coached me through my first op-ed submissions and media appearances. And so much more.

Forgive me if I'm rambling. I'm still in shock.

For more about Paul, see the links at
http://lflegal.com/2010/08/paul-longmore

http://notdeadyetnewscommentary.blogspot.com/2010/08/tremendous-loss-paul-longmore-has-died.html

http://www.facebook.com/profile.php?id=693073084

I'm sure that if not for Paul I would have never been able to face let alone articulate the complex issues that characterized my life. Here, then, is a new installment of what Paul has wrought...

***

I'm always required to articulate my wishes and needs, can't just act on them. I'm forced to plan ahead. And I internalize this self-discipline. Impulsiveness is drained out of me! Without realizing, I come to depend on precedent—whatever worked before should work again—because I can't trust in winging it.


Later in the school year, one of my extra special friends invites me to her apartment to play. A smart, petite girl with long, thick black hair, Joanie lives only a few blocks away. Her mom comes to escort us. Which means she's going to push my wheelchair on the sidewalk—but first, down the school steps. Joanie's mom doesn't look physically strong, yet I bravely give her instructions. I can feel her hands shake as she clutches the handlebars of my wheelchair. One step at a time. We get almost all the way down without incident ... until she slips. I fly out of her hands and bound down the hard marble stairway—k'bump-k'bump!—to hit the bottom. I'm facedown, my chin on the lowest step, my wheelchair on top of me.


Mr. Martinez, the school's muscular and jovial maintenance man, is there, leaning over me, trying to pull me up. It's hard to talk with my chin pressed against the bottom step, but I know words are my strongest asset and best defense. Mom has drilled that into me over the years. I manage to say, "Open the seat belt first."


The only Walden staffer not called by his first name, oddly enough, Mr. Martinez bends down to make sure he understands. I can smell his sweet cologne, and I'm grateful. It's important he understand me. If he pulls the wheelchair up without unbuckling me first, I'll twist an ankle. He reaches under me to unfasten the belt. Released from the chair, I slide into a slightly more comfortable position on the floor. He is then able to lift me bodily—like a groom carrying his bride over the threshold—without twisting my ankle, and carry me up the steps to a sofa in the school office. Someone else brings my chair. The school nurse looks me over, calls Mom. Joanie and her mom stay near. I'm in no pain, but the wait for Mom seems very long.


Finally she's there. The play date is canceled. No other harm done. You become used to wheelchair accidents.


The next time Joanie and I get together it's at my apartment.

[For that naughty story, tune in again in a few days...]

Part 13 of "Miracle Boy”

In second grade I begin having bathroom troubles at school again. I've become too heavy for my teacher to lift onto the toilet. So one day my parents present me with a urinal bottle to carry every day in a canvas sack hung on the back of my chair.

I'm unsure about this—I'm afraid some kids will tease me when they see it—but I must admit it should do the trick. (I never make doody during the school day; only at home, when I get changed for bed.)

The portable urinal is the latest step in working out the logistics of my attending a regular school, another "reasonable accommodation" my parents devise, decades before that term becomes a point of law.



But there's one more complication. This time, instead of a code, Mom sets it up for my new teacher to take me to the bathroom every day after lunch, whether I ask or not. At home I'm already going to the toilet on a set schedule, and it eases the burden of having to ask, so I accept.


My life at age seven is highly regimented. When I'm set up at the table with crayons and paper, I know I must have everything within reach, everything I'll need for as long as possible, so I won't have to ask busy parents for extra help. They're kind, but can't always be at my beck and call. Where other seven-year-olds might choose clothes for themselves and change their minds two or three times, I'm still dressed by my parents and have to select outfits they'll accept—outfits I can stick with, too, because it's too much trouble to change my mind. There's no surprising my parents! What's more, my entire wardrobe is memorized so I can name clothes without looking in my drawers. I'm dressed in bed, before getting to my chair, and it's impossible to see into my drawers from there.


Inevitably, a certain rigidity settles into my life. Spontaneity becomes a forbidden luxury, even spontaneity in peeing. In fact, my life soon feels overrun with orderliness and rationed efforts.

[Stay tuned!]

Part 12 of "Miracle Boy”

The Worst Date Ever:
War Crimes, Hollywood Heart-Throbs and Other Abominations

Yes, this link is an ad.  An ad from which I'm not earning a cent, BTW.   But it is an ad for great book I just gobbled up with gusto (whoever he is!).  Unfortunately, it's not published in this country yet.  Lots of Britishisms.  And definitely not for the kiddies.  But if you're over 16 and get into it, it'll make you laugh and cry out loud, perhaps at the same time, and you won't even be embarrassed because it's that good.

Speaking of embarrassed, read this next selection from my own humble memoir:

To be nearer my new school, we move from our second-story apartment on East 79th Street to a six-room co-op on the eighteenth floor of The Beresford, a cavernous Art Deco building on Central Park West. Alec, who is eight, is against moving. He likes life to stay the same. Or maybe he just likes to argue. Soon after moving, Mom and Dad have all the doorway thresholds removed and smoothed over, an access modification for me. This is thirty years before access modifications become codified by law. Mom and Dad and the men they hire have to figure it out on their own. Pioneers, again! Workmen and sawdust fill the place for weeks. The light switch in the bedroom Alec and I share is lowered so I can reach it, when I'm pushed close enough. I've never flipped a light on and off before. Who knew it was so simple? I flip it a hundred times that first day.



Still, other logistical problems come up. I start peeing in my pants at school. It's a logistical problem because I have no way of raising my hand to be excused, no way of taking myself to the bathroom. And I'm embarrassed to shout out for help. "What if you had a different way to signal you need to go?" asks Mom.


She tells me to suggest a word or phrase that's easy to remember—something I wouldn't ordinarily say, which has no other meaning, and that I'll feel comfortable calling out in public. It's genius! And it's lovely because it means Mom understands. I have no choice but to get my teacher's help in the bathroom, naturally. I don't have the luxury of privacy. Yet this should make it less humiliating. I ponder a moment. "How about, 'Judy, one two three'?"


Mom shares the code with Judy, my teacher, who likes the idea. I feel like Jonny Quest on an adventure, complete with a secret code. It's my way, using fantasy to deflect discomfort.


The battle may be won, but the war isn't over.

[Next up: The Battle of Second Grade!  And more...]

Part 11 of "Miracle Boy”

On a half-cloudy November afternoon a girl named Carrie crawls across a classroom tabletop toward me, grinning. Bony and high strung, with long black hair she's always tucking behind her ears, one of many ticks, she's a friend but not a member of my Club. I call my group of best friends a Club, a restricted club, and though it has no benefits other than wheelchair-pushing prerogatives, the other kids seem to like being members. "Hi, Ben!"


"Carrie … what're you doing on the table?"

She inches closer. At the edge of the table she says "hi" again. Then she's practically in my lap. She reaches out and begins unbuttoning my navy-blue corduroys and unzipping my fly—

"Carrie!" Judy yells from across the room. Carrie's white-hot face falls like a startled soufflé as she looks up, unhands my pants. Judy marches over. "Back to your seat!"

Silently, Carrie crawls away. Judy steps closer and closes my pants. No more is said about the incident, and I laugh. Later, when Mom comes to pick me up, Judy tells her what happened. They talk in soft voices. On the walk home Mom tells me to let her and Judy know if anything like this occurs again. Some children have a hard time accepting my handicap, she says. That's not so, I say, not in this case. Mom says she understands it was just play, but still. I say okay, but I'm lying. I don't want to tell Mom or Judy or anyone else if it happens again. If I commented on all the odd things people do around me, I'd never shut up.

For instance, I never tell about Quentin. He's a long-haired, pale-skinned, rangy boy with a taut, satanic grin who frightens me. It's not merely his appearance. It's something about the way he looks at me, or doesn't, with his fanatical eyes. I try ignoring him. He's one of the reasons I surround myself with friends, as a defense. Quentin pays us no mind, and at first I congratulate myself on a strategic victory. All goes smoothly, but only for a time.

***