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.

***