Miracle Boy Grows Up (31 page)

I come out of surgery with a colostomy bag and no way to talk. ML, the only one who can read my lips, keeps vigil beside me in the ICU round the clock. Several days pass. She tells me she’s stashed the kids at her brother’s and taken a leave of absence from work. She brings my usual prescription meds and nebulizer machine, in case I get into breathing trouble. Which is likely if I spend too much time lying down, especially after surgical anesthesia, which tends to deposit phlegm in the lungs. She is quite plainly my lifeline.

After two or three days the tube is removed from my throat so I can talk, and I gradually emerge from the medically induced fog. Hospitals are rough on me. Even as I’m restored to solid food, I can’t eat well in bed. My atrophied muscles feel weaker than ever. And now that I have this literal sack of shit affixed to my belly, I can’t put on my usual abdominal brace, which supports my breathing—my diaphragm—when I sit upright.

In a medical catalog, ML finds a similar abdominal brace with a cutout for a colostomy bag. Meanwhile, she suggests cutting a hole in my old brace. But the doctor doesn’t give me permission to get out of bed. I was only supposed to be here a few days and it’s a week already. It’s practically Christmas and I’m thinking about my kids.

I tell the surgeon—during the two minutes he tarries at my bedside before seven AM—that I have two small children I’d like to be with over the holidays. Cedars is a Jewish hospital and maybe he doesn’t understand. He says I’ve developed a fever.

On the eighth or ninth day I finally talk him into letting me go, provided I fill a prescription for Zithromax, to handle whatever is causing the fever. It’s Christmas Eve. So desperate am I to leave that I urge ML to throw me in my chair and drive home as fast as possible, though I’m having trouble breathing. It’s only because of poor abdominal support (I hope). Whatever the cause, I know I’ll feel better in my own bed. She does what I ask. And sure enough, though I’m desperate for air by the time we get there, I do breathe better in my home bed. My whole body unwinds internally, and I feel victorious! Free of the hospital gulag! Home for Christmas!

Our sister-in-law brings the girls home and, before leaving, congratulates us on our “Christmas miracle.” For dinner, we buck holiday tradition and order mild Indian food to be delivered. I manage to eat a few bites of naan. Then I want to sleep.

In the middle of the night my gut starts aching. Gas, I figure, a common consequence of eating lying down. I wake ML and ask to roll onto my stomach. It’s my best position for sleeping, plus it should help with the gas.

“You can’t go on your stomach anymore,” she reminds me. “You have a colostomy there.”

“But . . . I have to. Come on, you can do it.”

How foolish I was. I should’ve listened to her. Five minutes after turning over, my stomach is hurting worse than ever. I need to roll back. For an interminable duration I try rolling this way and that way . . . It’s four AM when poor sleep-deprived ML (she’d spent the past few nights in a hospital chair) notices my colostomy bag is filling with blood.

In a panic, she drains the blood into a jug—and it refills again. She calls 911.

And so, within hours of my return home, an ambulance rushes me to the UCLA emergency room, which is closer than Cedars. I remember telling the ER doctor, “My wife will kill me,” since I’d made her take me home and roll me, against her better judgment. I remember ML’s showing up, having told the kids to get up and open their presents without us. I remember the persistent pain in my gut, and being wheeled in a bed to a small room with a TV I can’t see. I remember lots of people hovering around me, and I vaguely remember wanting to roll over again. ML says I asked for my mother, which I now know is typical of hospital patients facing imminent death.

The next thing I can conjure from memory, I’m accidentally onstage during a performance of
Wicked
. My mind is copying a surreal scene from a sitcom I’d watched weeks earlier. Everybody is gawking at this idiot who’s fallen onto the stage. I can’t get off stage. I can’t get out from under the bright lights. Then a curtain closes—or opens. Regular light seeps in. And Dad is there, gazing down at me. Behind him, ML. My stepmother Barbara and both my brothers—Alec and Jeff—too. It’s like the final scene in
The Wizard of Oz
—my whole family surrounding my bed. But in this case it’s a hospital bed.

They’re asking me if I recall passing out, if I know I’ve been in the hospital for several days. But again I can’t talk. Tubes in my throat are gagging me. I try to get a focus on my surroundings, but I don’t have my glasses. A maze of hallways with TV sets mounted high, that’s my impression. Alec asks if I want to watch
Law & Order
. I try to make a “no” face.

I also remember thinking about an article I’d recently written for one of the disability magazines about computerized communications equipment for people with multiple disabilities—screens that give you a choice of words to generate sentences which the computer will speak. This is what I need now, I figure. Communications equipment. I try desperately to relay this.

Dad and Alec recite the alphabet, waiting for me to blink to indicate a particular letter, to spell out what I want to say. I’m too woozy and can’t spell. My mind keeps wandering.

Here’s what I learn later: I had internal bleeding, which led to septic shock. I nearly died, at forty-five years old. If ML hadn’t been there to insist I was “full code”—the opposite of “do not resuscitate”—the doctors might’ve given up on me.

The internal bleeding was from the colon surgery I’d had the week before. The surgeon at Cedars had left a tear somewhere inside me, which became infected! Hearing I might not make it, ML had called my family. Dad, Barbara, and Jeff were on vacation in Mexico and flew back to LA immediately. Alec came from New York. The girls were back at my brother-in-law’s.

But this is far from the end of it. I remain in the ICU for the next three months—only vaguely aware of the markers of time, passing events such as the Super Bowl, Valentine’s Day, the Oscars, the presidential primaries, even ML’s birthday, all of which vanish into a black hole in my consciousness-memory— most of that time unable to talk. Dad, now eighty, stays with me nearly every day and ML every night. She’s given notice to her employer, who kindly sends a gift basket and promises to save her job; she’s also secured a live-in babysitter for the girls.

Where would I be without my loving family? What happens to those who have no one, who are alone? I shudder to think. And though I’m not a praying man, to this day I try to thank God every night.

To explain why I’m stuck in the hospital for so long is almost impossible for me. It’s too grueling, too recent, too vaporous in my mind. I know I develop multiple pneumonias and scattered blood clots, pass in and out of consciousness. There are many wonderful, attentive, and patient healers, who matter more than they’re ever told—if you’re one of them, reading this, I’m forever in your debt—and sadly, an equal number of unpleasant or downright scary ones. The attending physicians imply I might never fully recover, might not ever get my old life back, might end up permanently in an institution— perhaps the kind the disability movement is fighting to “free our people” from.

But in March I do return home, three months after being whisked off in the night by ambulance. Though not back to my old life, not at first. For the next six months I spend most of my time in a rented hospital bed at home, with a series of clueless nurses. I use a rented ventilator off and on till mid-May, when my ability to breathe becomes dependable. I have a tracheostomy in my throat—a version of which remains to this day—and require phlegm to be suctioned. Through July I have a feeding tube inserted into my nose, through which cans of milky, unflavored pabulum must pass, my only source of nourishment. At one point I weigh less than ninety pounds, a good thirty or forty pounds off my usual weight in pre-diarrhea days. And I sleep at least twelve hours a day, through August.

My recovery is only partly a matter of regaining strength. It’s also got to do with weaning off meds (which is something no one tells you!). I’d been put on so much stuff in the hospital—digestive facilitators, blood-pressure regulators, and so on—that even the doctors lost track. They just kept refilling them. Gradually I acquire the presence of mind to ask my primary attending physician directly, “Do I still need Norvasc? May I stop taking Protonix? Do I still have to monitor my oxygen levels and pulse rate twenty-four/seven?”

In this way, one by one, the trappings of my hospitalization are shed. And with fewer drugs in my system, I become more alert, more awake, more in charge.

***

T
here is one other vestige of my hospitalization I’d be remiss to omit: an open pressure-wound near my ass, where my tailbone protrudes. It takes another year—and several specialists to examine and treat it—before it closes up sufficiently. ML still tends to the scar.

During my convalescence, as at the hospital, no one else looks after me like my wife. All the fine details that keep me from slipping off the precipice: Am I getting the right meds on the right schedule? Is the feeding tube kept clean and unblocked? She gets so good at it that the home nurses ask if she’s a doctor! And ML does all this despite sleeping only intermittently on a leaking inflatable mattress squeezed into a corner of our bedroom.

Come August, I know I have to make a break. I know I won’t ease back into anything resembling my old life; I’ll have to seize it, reclaim it—colostomy pouch and all. It’ll be different from before, to be sure—since I now have a permanent colostomy pouch and small tracheostomy—but I’ll figure it out. With ML beside me, I know I can do it.

***

W
hen we at last say goodbye to the desultory nurses, it feels like a big step. I start looking for an attendant again—someone more skilled than I’ve needed in the past, but still not a nurse. A man hired by me to follow my directions, unlike the home nurses who work for an agency and almost uniformly treat me as if I were incapable of managing my own care.

To hire an extra-competent attendant will require extra money. Barbara, my stepmother—retired now, but apparently in good financial shape after a long and loyal corporate career—offers however much I need. I’m speechless at her generosity, especially thinking back on what seems like my lifetime of ingratitude.

When I was in the hospital, Barbara helped ML with the bills. Not just paying them (the total exceeded a million dollars—most of which Blue Shield absorbed) but coping with the flood of paperwork. ML was overwhelmed—unable at first to access my online bill-paying accounts, then struggling to figure out which I had on automatic payment and which I didn’t. In the course of this, Barbara discovered how much credit-card debt we’d been accruing. And not, I hasten to add, from fancy dinners, extravagant shopping sprees, or vacations. Just basic expenses. (My half-brother, Jeff, deserves grateful applause too, for handling my e-mail correspondences in my absence.)

Barbara’s generosity engenders an unexpected side-benefit: Knowing I’m well taken care of, Dad stops worrying to death about my finances.

***

D
uring my illness, on good days, I thought a lot about the memoir. I couldn’t write, but wanted to. Conjuring up my real-life identity provided an anodyne escape from the latex-smelling tubes and incessantly whirring, beeping machines. I drafted chapters in my head, hoping to memorize them. I was eager to return to the task that had enraptured me.

Afterward, resuming the writing proves not so easy. Back in my chair, back at my computer, I first tend to my magazine work. I’d had to cancel a few assignments when I dropped out unexpectedly, and I’m eager to reestablish myself, get back in the game. There’s nothing quite like nearly dying—to harken again to that Churchill quotation about missing an assassin’s bullet—to make you feel reborn.

On the other hand, my second life is haunted by the specter of vulnerability. It’s as close and constant as a shadow. What will happen the next time a dangerous illness befalls me? Will I have the strength to get through it? Come November 2008, I turn forty-six. Who knows how many good years I have left? I’m filled with a hunger for life but also an indelible sense of caution. A mild form of posttraumatic stress disorder, perhaps?

In any case, the need to write about my life takes on a new urgency.

***

K
nowing how good it feels to be free from the clutches of hospitalization— and I seriously doubt I would’ve recovered so successfully anywhere but at home, under my wife’s tutelage—I feel a special affinity for the current thrust of the disability movement: deinstitutionalization. In 2005 President Bush initiated a program—which President Obama expands—called Money Follows the Person, which basically mandates that any state funds for care of disabled people in institutions shouldn’t be jeopardized if and when the person transitions to at-home, community-based care.

Not that the old struggles for equality, accessibility, and integration are ended. They aren’t. But now they’ve moved into the courts, to a large degree. Lawsuits go on all the time. Veterans of the movement—who taught me so much—sometimes seem to forget how far we’ve come. We no longer have to agitate for a seat at the table. We’re there, or at least in the door—we’re part of the debate now, a political contingency.

When my daughters’ school recently announced plans for a Diversity Day, for example, I immediately e-mailed the organizer to make sure disability was included in the mix of racial, religious, gender, sexual-orientation, and other issues under discussion. I was prepared for a fight—but found that two other folks had already volunteered to lead disability-awareness sessions!

At the same time, many younger folks with disabilities tend to take the cause for granted, failing to realize that those accommodations we see every day—wheelchair lifts on buses, ramped curbs, etc.—didn’t magically appear out of the kindness of people’s hearts. They came only after hundreds, possibly thousands, of patriots protested, got arrested, and sued for fairness.