BRIGHT LIGHTS, BIG DISAPPOINTMENT *

(*With all due respect to my good friend @JayMcInerney)

You are not the kind of guy who would be in a place like this at this stage of Obamacare.  With your biography, you could've been its poster child, but now you're in danger of becoming one for the opposition.

By now, everyone has an Obamacare story to tell.  While the Administration touts the 8 million Americans who signed up, many for the first time, others grumble about bureaucratic nightmares, abrupt cancellations, or online-exchange glitches. You've suspected the truth probably lies somewhere in the middle, but now you feel you've been had. You—an informed consumer who advocated for such reforms for years.

You hate yourself for writing this, providing fodder for antagonistic Republicans.  It gives you what psychologists call cognitive dissonance.  As a self-employed professional with pre-existing conditions up the wazoo—quite literally, actually—you craved the basic fairness of the Affordable Care Act.  Before it, your only option was an outrageously expensive PPO that paid 70 percent of in-network doctor bills and 50 percent of so-called "customary rates" for out-of-network services.  For this you forked over the princely sum of $10,408.80 a year in premiums. 

But as a "high-risk patient," you were grateful for what you got.  You were born with a neuromuscular weakness called spinal muscular atrophy; you've never walked or stood, and your lungs are so weak that a bad cold could kill you.  People like you can't be too choosy about their health insurance.  Employers rejected you, though you'd graduated from Harvard with honors.  The only work you could secure were freelance magazine assignments.  As an independent contractor, you had to secure your own coverage.  But when you aged out of your parents' policy, in the late-1980s, you couldn't buy health insurance at any price.  So you joined organizations—the National Writers' Union, the Media Alliance, etc.—just to score a group plan that didn't require a medical examination.  Still, carriers kept dropping you.  They called you too expensive.

The Clinton Administration brought passage of the Health Insurance Portability and Accountability Act, which enabled you to purchase insurance without any pre-existing-condition exemptions if you had proof of prior coverage.  A terrific help, this is how you ended up with the pricey PPO.  You clung to it for years. 

But last October you received word that it was ending, thanks to the ACA.  No worries.  You would be automatically shunted into a new policy that slashed your premiums in half and cut your co-pays to practically nothing.  Even when the application process faltered, you defended the new order.  Friends and family held you up as an example of its success.

Granted, your gratitude waned when you learned the new, cheaper plan excluded your local hospital and its doctors.  But soon, undeterred, you found a competitive policy and made the switch before the cutoff date.  Progress is always bumpy, you told yourself.

You were so innocent.

The weeks that followed were filled with obtaining authorizations for ongoing prescriptions.  Some had to be transferred to a new mail-order pharmacy.  Small hassles, to be sure, but you believed this was a phase that would pass.  Only when your primary physician suggested you consult a specialist—a cardiologist for a routine scan--did a true sense of panic dawn.   "The doctor won't see patients with any of the new plans," the receptionist politely but bluntly informed you. 

Ditto the second and third cardiologist referrals.  Next, your beloved urologist, whom you found only last year after rejecting several others, said essentially the same thing.  Even your long-time gastroenterologist and colorectal surgeon (six years ago you had a colectomy, hence the wazoo reference) blackballed you.

It seemed impossible.  You had been so careful, so sure.  A physician friend explained that the new plans are simply not paying doctors a fair and adequate rate.  Doctors who accept them are losing money.  This is how insurers are making up for what they've had to give up under Obamacare.  Soon, your friend cautioned gloomily, many doctors could go out of business.  It could become practically impossible to find any doctors willing to practice.

You do not believe it.  Obamacare couldn't be the end of medicine as we've known it.  Yet for now, you have to choose between seeing specialists you don't want or paying full-freight for ones you do.  In which case, why have insurance at all?  Then you remember: you don't have that choice anymore.

You are stuck—stuck with a cheap plan that doesn't serve your needs.  It doesn't matter that you went for the "platinum" option, foregoing tax breaks you might have received from the state-sponsored exchange.  It's still no good.  You even asked your broker if there's any kind of supplemental, stopgap policy you could purchase.  She said no.  You can't change anything until the next open enrollment in mid-November. 

Will there be a better choice then?  You can only hope.

Ben Mattlin
Author of Miracle Boy Grows Up: How the Disability Rights Revolution Saved my Sanity
Los Angeles, CA

Recent Observations & Random Thoughts about Book Publishing

The current issue of the New Yorker magazine has a funny cartoon I can relate to: a child looks up from her computer at her puzzled father and explains, "I'm not wasting my life online--I'm building my brand."  (March 28, 2011, p. 96.)

For many of us, that's what it seems to have come to. Or is supposed to come to. We're supposed to go online to build our brand identity, our public persona, our following, our platform.

If that seems utterly ridiculous, that's because it probably is. But then again, just the other day came a story about a young woman who has self-published a number of sci-fi novels with such great success--entirely through online branding and promotion--that she's on the brink of signing a contract with a traditional publisher for, at minimum, $1 million.

Is it any wonder folks like me are scratching our heads? And I shampooed just this morning! (OK, I don't really scratch my own head, but don't be such a stickler!) What does it take to get a new author out there?

No one says it should be easy. After all, nobody invited us to the party. We came on our own. And as everybody knows, books are a dying art anyway.

Some of us are hooked on the idea nevertheless.

Not that we are all voracious readers. In fact, I've always felt that I'm a particularly hard-to-please reader. I'm not one to consume books in big hungry gulps. I read slowly, thoughtfully, carefully. I easily get bored. I don't mean I need to read thrillers, because they can be pretty boring too, if they're not well written.

For me, I guess it has something to do with the language and the thoughts and feelings behind it. Hard to say exactly.

But this impatience or persnicketiness makes me want to write the kind of book I would want to read and haven't found yet. So I decided to create it myself.

As one writing pal recently observed, though, the writer's life is often lived within one's own head. And if you want to be read, you basically want others to live within your head too.

So I guess it takes a lot of gall or self-confidence or something to assume anybody else would want to live in your head.

Or to put it another way, you don't have to be crazy about books to want to be a writer.  You just have to be crazy.



New Yorker 3-28-11, p. 96



***

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!

###