Thursday, January 27, 2011

Part 38 of "Miracle Boy"

Not surprisingly, perhaps, but I've learned something new about Facebook.

If you want to increase your list of "friends" geometrically, seek out writers.

Not only will they accept your friending invite; they'll intimidate the heck out of you when you realize they already have thousands and thousands of FB friends!

More to the point, really: now I understand why.

It's this "platform" business.

Sure, writing is a lonely career. That might explain, oh, say, 150 FB friends. But thousands? That's building a constituency!

Now, my sources say this "you need a bigger platform" business is just that. THE business, as in BS. It's become a common excuse.

The truth, I'm told, is that nobody--other than the John Grishams of this world and their ilk--has a platform. At least not in the sense of thousands of readers guaranteed.

What's more, I do have people like you, dear reader. Plus I am part of various associations that boast tens of thousands of members. So my potential market is pretty huge, thank you very much.

More about the woes of getting published next time I write. Meanwhile, another installment, one of the final few…

… Worst, worst of all: how the nurses tease him. Loudly. Every few days. Whenever they discover wet semen on his sheets, his catheter blocked or popped off.

"Heeha!" the loudest one laughs. "What you been doin'?! You gotta cut that out! I ain't cleanin' up this mess no mo'! You a bad boy!"

I vow never again to be jealous of the cool, popular boys at school or resent others' mobility and freedom. I've come to realize that I could have a lot less mobility and freedom than I do. I will remember how lucky I am. I'll put the inimical, tough-guy Ben to rest forever when I return to the land of the living, and always try to appreciate my life just as it is. As long as it's far away from here or any place like it.

I make this vow privately and never tell anyone. But it's dead serious. The most religious experience I think I'll ever have. A promise I make to God. "Let me out of here, and I'll never forget."
On Labor Day weekend, Barbara and Dad visit with their new baby, Jeff. Barbara barbecues a chicken in Happydale's outdoor area. My bed is rolled outside, too. We all try to pretend it's pleasant and normal.
Life, however compromised, settles into a pattern.

Back in New York, the school year is starting without me. One afternoon in early-September, Mom brings a manila envelope stuffed with my classmates' good wishes. I know it was an assignment from Mr. Penis, but I'm moved nevertheless and reread every note. I call it my fan mail, and still have the package today.

In response, lying there like a slab, I ask Mom to take dictation. I want to write a sort of thank-you to my class, or really an explanation of what I've been going through—to head off rumors, excess sympathy and most of all awkward silences upon my return.

I want to submit it to the school newspaper. Still figuring humor is the key to improving my social standing, I gave it the sarcastic title What I Did Over My Summer Vacation, and begin it with, "Have you ever wondered how dirt gets on the ceiling?"—a reference to the boredom of lying supine day after day. I end with, "Try not to be too jealous."

Toward the end of my stay, I gather sufficient courage to ask one of the volunteer teaching aids if she'd like to go to a movie "when I'm back on the outside." She's a pretty, dark-haired high-school girl with a warm smile, and says yeah, sure, but I'm not confident she means it and I wonder how I'd follow through anyway since she lives in Westchester. Still, it's good practice, I figure, since I didn't do so well with my Star Wars date.
(from which has an amazing resemblance to Happydale)
When at last I'm returned to Special Surgery, I'm put in a regular room in pediatrics with one other boy and no individual Trinitron, just one big set for the room. One evening he asks me what it's like to be a teenager. He must be about twelve. I don't know what to answer. Me, a teenager? It's then I realize my lengthy incarceration has made me older in some indefinable way, or at least feel older.

The halo and trach are removed and the cast cut back, though I must continue wearing what's left, which is most of it, for several more months. Still, the end of my hospitalization is near! After four months that were supposed to have been six.

I'm truly lucky.

You see, the odd assortment of suffering I witnessed, especially at Happydale, will leave an indelible mark. I'll never forget Murph, my masturbating Happydale roommate. After sharing a slice of life with kids like that, I cannot be the same again. I know exactly how the other half lives, and it's not good. For those of us with severe disabilities, you can never be too safe, too well protected, because the institutional snuffing out of privacy and dignity can never feel so very far away.

I've lost a lot of weight, too, despite the Doritos—which feels good, since I was fat—and I'm taller than I was, since my back is straighter. I also now sport several long, downy tufts on my chin and will need to shave as soon as I'm released. A new man, within spitting distance of fifteen.

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