Like Seinfeld, It's Really About Nothing…

I have learned something surprising (to me at least) about teenage girls.

They talk about breasts--and breast SIZES--even more than young teenage boys!

Who's got big ones.  Who's got small ones.  Who thinks she does but doesn't.  And so forth.

Which I had thought was impossible. Really. I mean, teenage BOYS talk and think and giggle and dream about--well, you know. Am I right, dudes?

But girls do too?  Yup.  Girls do, too.  Even more so.

Plus, young women even use what I used to think of as slang-ish terms not suitable for so-called "mixed company"--primarily "boobs"!

Is it a sign of the times? Or was it ever so?

Of course, I never had sisters. Now I have two daughters. Teenage daughters. So I'm coming to understand many, many, MANY things I never did before.

I relate all this not only to improve my Google scores (and apologies for disappointing you porn-seekers), nor to demonstrate that I am now--in my advanced state of maturity--actually able to say the word "breasts" with a straight face, more or less.

I say all this as an example of Things I've Been Learning About. The advantages of the passage of years … the knowledge--dare I say wisdom?--that comes with age.

Speaking of the passage of time, I've been off-line for several weeks. I've had deadlines, then got behind. So I became a complete working stiff. Doing nothing all day every day including weekends but work on the work.

When this happens, I become like a bricklayer. A factory. Absolutely no solitaire. No crosswords. No Facebook. Hardly read the newspaper online.

But now, that is past. At least for the moment. Deadlines are met. I have others, but they seem doable so far. I'm back among the living.

Yet I find that's not as automatic an adjustment as one might suppose. It requires a somewhat conscious effort. Call it decompression. You know:

• Reading and answering old e-mail.
• Remembering to do the things I like, the pleasant distractions. Such as reading books & the paper.
• Reacquainting myself with my literary side.  
• Getting back to my book-in-progress.
• Coming up with new ideas for articles and essays.
• And of course, catching up with my online pals.

Which reminds me: I received an e-mail from someone who recently posted a blog about how to interview counselors and psychotherapists. An interesting idea. There IS a glut of social workers and licensed counselors and such, after all, at least in my neighborhood. So one can and should be choosy. Why not interview a therapist as you would a gardner or housekeeper, to decide if he or she is the right one for you?

Not sure why the blogger contacted me or felt there was an overlap in our interests or audience. Maybe I was just on a list. But, hey, the Web is for networking, right? For building community. For overthrowing tyrants. Whatever.

So here's the XXXX [link removed by request, two years later.  Strange world.]

More publishing news soon, I hope. Meanwhile, happy Mardi Gras!

***

On platforms and prisons

Since I'm writing a memoir, I try to keep up on memoirs.

Lately, I've been reading Ari Steinberg's recently released Running the Books: The Adventures of an Accidental Prison Librarian . A really good read. Funny, moving, sharply observed, energetic, and ripe for a TV spinoff.

I recommend it.

I was put on to the book by a friend. This same source told me that a TV deal is brewing (it's also on Steinberg's Facebook page). Which seems a natural, since it's basically a fish-out-of-water scenario.

In brief: A recent Harvard grad from an Orthodox Jewish family ends up taking a job as librarian and English teacher in a Boston-area prison.  A true story.

It's full of characters with kooky nicknames and outsized personalities. Inmates and prison guards alike. A mix of races and types. Pimp jokes galore! And lots of wry observations about how life on the inside often resembles life on the outside, and vice versa. Except when it doesn't.

Here's the thing: It's Steinberg's first book. Before publication, he had a few clips in the Boston Globe, apparently. That's about it. No "platform," as far as I can tell. That is, no proven audience. No following. No guaranteed sales.

Once he got the book deal, however, his byline began appearing on the DailyBeast, in The New York Times Sunday Magazine, and elsewhere.

So the question on my (jealous?) mind is, how did this guy get a book deal when I can't?

In fairness, this book IS well written. I concede that it may be a much easier read than mine. Yet it also seems, well, fairly unimportant … an amusing, occasionally thought-provoking entertainment … a diversion. To me, it's not especially deep. It's a small story. Unusual, to be sure, and offbeat, but ultimately pretty safe territory.

When it comes to the vagaries of publishing and personal tastes, most people would just shrug. Still, I wonder.

Despite this book's breezy sheen, it's a memoir, not a novel. Though less gritty, it reminds me a little of James Frey's A Million Little Pieces, a book I liked, actually. As you might recall, that's the one that caused a controversy when it was revealed the author made up most of the supposedly true tale.

I'm not saying Running the Books is a work of fiction disguised as a memoir--though I do notice it's the same publisher as Pieces', Doubleday's Nan Talese imprint.  By the way, when I contacted the house about my memoir-in-progress a while back, I was politely told mine "would not be a good fit for our list. We publish only literary fiction and narrative nonfiction, and your memoir sounds much too mainstream…"

These things always baffle me. Doesn't "mainstream" mean that it suits a lot of people, i.e., readers? And isn't that what having a "platform" is supposed to mean, too--that you'll have lots of readers?

Speaking of readers, you should know that I've had about 50 pre-orders for my unfinished book. Which is great! Thank you, all!

But as ever, we need more to put this over. A lot more.

Maybe it's true that there's no pleasing me!

Part 40 of "Miracle Boy": Join the crusade!

Over the past few days, I've been Twittering (tweeting?) excerpts from favorite rejection letters of the past.

Why?

Gosh, I'm glad you asked!

I do this not to elicit pity. Let's make that clear from the get-go.

Rather, I'm posting the rejects because…

1) I think they're funny, with their pretentious self-importance, the way they struggle to say "no" ever so humbly and graciously (they never "reject", they "pass");

2) they illustrate the overarching, vexing conundrum--namely, What the hell do these publishing gatekeepers want anyway? Or: Why is it so hard to get my book published?

I'm not alone in this.  I know many, many struggling writers share a similar pain.

Some of whom no doubt suck. But many of whom are worthy.

I contend that publishers and agents often don't really know what they're talking about. To be fair, they're in a tough spot. Publishing is a profession both noble and storied. In that, it's a lot like the dinosaurs. Grand, but probably on the way out.

Look, many of these people want to be instrumental in putting great works out there but feel constrained by the bottom line. So they contort themselves in amusing ways trying to justify their existence.

There is a paucity of and desperate need for risk-taking. Or something like that.

Let's face it: You've read excerpts from my memoir (a new piece of which follows). My potential market would seem pretty vast: NPR is reportedly broadcast on 900 U.S. radio stations, transmitted to more than 150 other countries via satellite, and heard by countless more over the Internet; Americans with disabilities number some 50 million, not to mention their families and the professionals who serve them (one group, Friends of Spinal Muscular Atrophy, boasts 70,000 members!); the Harvard community is pretty sizable; and even readers of the financial magazines to which I contribute should figure into the mix.

So again I ask, What more do these people want?

Speaking of more, I'll post more rejection notes soon. Meanwhile, here is more MIRACLE BOY.

***

When time comes for me to take the S.A.T., Mother—as I've taken to calling her, to show my maturity—gets me tutored. She knows I haven't had Alec's academic training. Mom has become happier, except for the weekends of chemo- and radiation-induced nausea, during which she hides herself in her bedroom. She's become an item with a man named Bob, another writer and Harvard grad, like Dad. She's also working full-time at a small publishing house. Though she complains that it doesn't pay much, she insists she enjoys the camaraderie and intellectual stimulation. She's even trying to write her own book about having cancer. She says when it's published she'll take us to Europe.

For her, seeing me grow up and managing a degree of independence is a relief and a joy, she says. As if she doesn't want to leave this world worrying about me.

She doesn't even get mad when I tell her I was smoking with friends in the Park. I think she's just glad I have friends, have enough autonomy to be a little naughty. Fitting in has always been important to her. Being well socialized. Maybe it's a case of boys will be boys. But I knew she would feel that way, which is why I told her. I was almost showing off, like smoking with the guys was a badge of acceptance I had achieved.

It's very nice that Mother and I now have this kind of understanding and honesty between us. I'm glad I didn't "divorce" her and move to Stamford. The shrink knew what he was talking about!

When I at last take the S.A.T., Mother makes sure a proctor goes over my answer bubbles. I'm able to handle a regular pencil (or lightweight pen) and paper pretty well, but she's worried I don't press hard enough to make my answers register.

Soon all such standardized tests will be required to make accommodations like that for students like me. But at the time, we have to take accommodations into our own hands.

###

That's all for now! I need to write more. I have outlined the rest of the story, but I'll spare you that. Leave some suspense. From now on, let's talk about what we need to do to get this thing published. Really published. Old-school-style.

Hope you'll keep riding with me...

Part 39 of "Miracle Boy"

In Sunday's New York Times Book Review, a rant about how there are too many memoirs complains that we as a culture are obsessively over-sharing personal yet uninteresting details.

Puh-lease!

It may be true, but the reviewer unfairly blames the memoirists themselves. He should blame the publishers.

To me, the more important question is: Why do so many ho-hum memoirs get published when really good, important ones (like mine) go wanting?

And here's a soupçon more:

***

When I return to high school, it's late-October. The weather has turned chilly and gray. The kids are already settled into a new routine, but there's little change from last year. It's the same teacher, Ekkehard Piening; the same kids—there is only one class per grade—and, at Steiner, the routine scarcely varies from year to year or, I suspect, generation to generation.

To my surprise, I'm greeted by an abundance of bonhomie. The essay I dictated to Mom about my hospital experience has appeared in the school paper, and my words worked their magic!

I have to wear the upper-body cast, which protrudes from my shirt, but I have no shame about it and the kids are accepting. At recess I have someone tip my wheelchair back against the wall to ease the pressure on my spine—doctor's orders—and even that goes smoothly. Plus my terrific attendant, Kenny, decides to stay on, despite the four-month hiatus. He doesn't stay with me at school but takes me there and back every day and works late when Mom goes out at night. A medical student on leave, he's smart and we talk about everything. He becomes the nice big brother I never had.

I begin to see how important the quality of my attendant is to my very quality of life.

Every second weekend I visit Stamford, where Dad's my attendant. Jeff is growing up, which is fun to see, but I have no friends and nothing to do there and it's boring. My friends have become very important to me.

With each year of high school my roster of friends increases. On warm afternoons and evenings we hang out in Central Park or on the museum steps—either the Metropolitan or the Natural History, depending on which side of the Park we're on. We drink Budweiser and smoke cigarettes, though I don't inhale. Most of the guys smoke pot. It makes me a little nervous when they're pushing my wheelchair over the potholes and bumps, but I never let on.

At school, one of my friends, Nanci, remembers my penchant for cartooning and wants a drawing of a shirtless Robert Plant, based on a magazine picture she cherishes. Flattered, I take special care on the important details, which doesn't go unnoticed. She squeals in delight when I present her with my penciled masterpiece. "Look—he even got the bulge in his jeans!"

Alec, still the big brain, aces his S.A.T. and will probably go to Harvard, like Dad. I don't want to go that route or be like that. I've learned to stop being a dork, trying to impress others with my intellectual chops, which I'm not sure I have anyway. The new Ben goes with the flow, lets the good times roll, and never forgets that misery and suffering are as close as my shadow.

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 http://www.blythedale.org/-- 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.

***

Part 37 of "Miracle Boy" and a new start

Here is my next installment. Only a few more left, and then a change of direction.

You see, I think I'm moving into a pre-publication phase. Nothing definite, yet. No contracts signed. But I have an offer.

It's not an ideal offer, however. What stands between it and what I'd like to have is the same old thing--a guaranteed readership. A "platform," in publishing parlance.

Never mind the hundreds who visit here every week. They're not enough. Apparently, I need thousands.

To me, there is something funny about this. The Kardashians or Balloon Boy have a better chance of getting a book published than someone who has slaved for years, polishing prose and even doing the right things to amass an audience. Publishing pieces in major newspapers and magazines. Securing a semi-regular gig on NPR. None of that matters. None of that matters because I'm still an unknown in the book world.

Which inspires a new idea!

In the next few weeks, when I run out of memoir installments, I'm going to begin a new series about the aggravations of trying to get published. I'll post some funny rejection letters, and invite readers to share their horror stories, too.

Think of it as Shit My Publishers Say.

In keeping with the promise of this blog, I will not rant or moan or mutter bitterly. I'm going to try to accentuate the humorous side of this absurd pursuit.

It's absurd because so many of us are drawn to it, and yet--especially these days--it's completely impractical. As someone in the biz recently said to me, NO ONE IS BUYING BOOKS! Everybody talks about how important it is to have a platform, but nobody really does because nobody can guarantee book sales these days!

You think it's hard out there for a pimp? Imagine being a publisher! Or, for that matter, an author.

I hope you'll join in my planned new format, and help me in this experimental strategy. It's a strategy to gain attention and a bigger following, and embarrass the publishing community into letting a few of us slip through its golden gateways.

But first, the final few installments of MIRACLE BOY –

***

It's soon apparent that the staff here is less well trained than the hospital crew I've grown used to; they're rougher, sloppier. My trach is never cleaned. I'm not bathed as thoroughly, if at all. And the place doesn't have wedge pillows (unless, I later learn, you place a special order). Plus it's harder for my parents to visit, being out in the suburbs. Within two days I'm begging for a transfer.

Can't I stay in the city? Or perhaps be cared for at home? Dad calls Dr. Levine. My request is denied. There's no extra room at city hospitals. I need to stay here, to recover slowly and be professionally monitored.

Shit!

I'll have to make the best of it. Imagine I've been captured by the Gamesters of Triskelion … Oops—I forgot. No Star Trek.


Happydale has a sort of school I'm rolled to every day in my hospital bed, even though it's summer. One thing I like about it is it has an extensive tape library. Through headphones, I listen to articles about politics, science, technology. Soon I have a volunteer—a groovy dude dressed in denim, with big dark glasses and a shaggy haircut, who smells of cigarettes, which is a scent I like, and calls me "buddy"—to read to me from The Pickwick Papers, my assigned summer reading (it's not in the audio library).

When Mom visits, she brings food—kosher London broil and baked chicken, personal favorites, which aren't on the establishment's menu. I keep a stash of Doritos by my bedside, which, believe it or not, is marked kosher. I need someone to feed me, since I'm lying down. I learn it's easier to swallow when rolled on one side.

I have to be rolled like a log, because the metal halo is now attached to a plaster cast that covers my torso and part of one leg. The leg pins have been removed, but my neck and, to a degree, hips are immobilized.

Because of being so stationary, I take physical therapy three times a week. Which reminds me of the pointless exercises of my early childhood, except this time I'm at an age to enjoy the attentions of my therapist, a really attractive brunette. As she flexes my knees and elbows, and orders me to work my fingers by buttoning and unbuttoning a raggedy old shirt, I only grumble slightly and, I hope, with the utmost charm.

The solitary television set in my room, mounted high, is on pretty much all the time. It's the summer of the Son of Sam killer. Elvis Presley dies. A new actress will replace Farrah on Charlie's Angels, and I enjoy reading in People magazine about her measurements (Cheryl Ladd's bust is even bigger than Farrah's!). But the weight of all this, the impact, is the dour realization that the world outside these institutional walls goes on.

One of my cellmates, er, roommates, with whom I have a begrudging affinity because he likes the Beatles and covets my tape collection, wonders aloud about the meaning of Elvis' demise. "Does it mean Elton John is now the king of pop? They always called him the prince, so—"

Try as I might, I can't block out all of it. One sound in particular will haunt me for years to come. It involves poor Murph, another of my roommates, a young man who is rumored to have lived at Happydale most of his seventeen years! It's said he could go home but his family doesn't want him … it's said they visit only on Christmas, Easter and maybe his birthday. I don't know if any of this is true, but he never leaves his bed for a wheelchair (then again, neither do I), and his infrequent speech is hopelessly garbled, probably from cerebral palsy or a brain injury. You don't need to understand his words to hear the urgency, anger, frustration, sorrow.

Yet worst of all is how the nurses tease him . . .

Part 36 of "Miracle Boy"

Welcome, new readers!  (You know who you are).

Anybody else in the disability community irritated by those anti-smoking commercials that feature gasping, wheezing, dried-out old folks as examples of what smoking can do to you--a fate worse than death?

I know they're for a good cause and all, so I hesitate to object. But to me the frightful images are offensive!

I mean, some of us look like that without having ever smoked … right?  Well, without inhaling, anyway. *Wink*

Maybe not me personally, but you get the idea.

At any rate, that's the germ of a new idea for an NPR commentary. We'll keep you posted.

Meanwhile, here's more of MIRACLE BOY.

****

That's okay. I'm comfortable.

After a week I'm still on an I.V., though. And a large, noisy ventilator, which I hadn't noticed before. Tubes everywhere.

God knows what all!

Machines beeping and buzzing … It's amazing I can sleep at all, and on my back yet! They're not all my machines, I gradually perceive. Some belong to my neighbors in the I.C.U. We don't interact. Maybe the families do, but not me. Mom and Dad might say a word to my roommates' visitors, but I pretend I'm in my own world.


One night the lights go off and on again. Nurses are suddenly swarming all around me. The head nurse is called in, though she's supposed to be off-duty. It's a blackout, they say. Indeed, the nursing staff is jabbering about it. I vaguely remember the blackout of '65. I was not yet three. It seemed Dad would never come home from the office. But he did and all was well.

So I'm not worried now. But my nurses are. Very. They pump a sort of football-shaped manual respirator into my trach. They check my pulse repeatedly. They check blood gases, which involves a painful needle into the muscles of my groin. They're relieved to discover my oxygen level is fine. The hospital has its own power generator, and soon my respirator is on again. It breathes for me and I become lazy. But I insist I'm fine. I'm not lightheaded. I'm not short of breath. At least I think I'm insisting. Mostly I'm smiling.

Soon the ventilator is removed completely, and I breathe on my own. I'm fine. Yes, fine. Always fine.

At times I'm even allowed to roll onto my belly, propped on a special wedge-shaped pillow. As long as my spine is kept in alignment, it's okay. With the pillow wedge, I can place my notebook down on the mattress and do a little writing.

One of my biggest concerns remains: Can I still touch my dick now that my back's straightened? (With my hand, that is—"reach myself," as Dad might put it.)

Eureka! I can! I can!

When the nurses remove the surgical catheter and wrap a soft, loose cloth diaper around my crotch, it enhances the experience!

***

After two months at Special Surgery, I'm transferred to a convalescent facility in Westchester County. I've been so cloistered, the glimpses of New York in August passing through the ambulance windows blow my mind. The city looks beautiful … absolutely mesmerizing and inspiring. I feel like a tourist in my own town!


A tourist who's strapped to a gurney, that is.


Sadly, the euphoria is temporary. Soon we're in the suburbs. By and by we arrive at Happydale, the institution I'll call home for the next three months. The very name conjures a shadow-gray sanitarium from an old horror movie.


I'm rolled inside and eventually parked in a large room with pale-blue walls and seven other kids. It's a downgrade from the I.C.U. Only one TV, for starters.


One of my new roommates, a young Black boy in pressed blue jeans and a tucked-in button shirt with yellow stripes, greets Dad, who is accompanying me on the trip, with a stagy formal bow. "Hello, my good man!" the boy says.


This kid is so animated and not post-op-like and, well, on his feet … the nettling question for me is, why am I in the same place he is?


In time, I learn the bitter truth. But for now, something else seems evident:


I am in the nuthouse!

###