by Ben Mattlin
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.
***
There 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.
***
When 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.
***
During 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.
***
Knowing 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.
Medical and technological advances clearly deserve a big chunk of the credit for my survival to date. But the disability movement shook me into figuring out my place in society. It showed me I’m part of a larger group—and a history—of people with all manner of deformities and impairments, and educated me on my civil rights. It rescued my self-esteem by introducing me to Disability Pride. Whatever I accomplish will not be despite my disability but with it.
Indeed, I couldn’t tease out my disability-related experiences from the rest if I tried. I haven’t had any other kind.
***
A few months after I’ve hired a new attendant and started getting my life back together, Dad comes around for a visit. At eighty-one, he’s mellowed but still sharp. He remains in remarkably good health, despite a lifetime of loathing exercise and loving desserts. He travels, attends the theater, reads a lot, sees every movie, volunteers at a local community center, and does some creative writing.
In many ways, I realize, he’s living more like I do.
I still can’t believe how he uprooted—moved into a hotel for months!—to look after me in the hospital. I can see now, as a parent myself, that it’s not so much that he or my mother ever held my disability against me or viewed it as a mark of shame or failure; they merely wanted to do whatever they could to give me the best possible opportunities.
Unshackled from financial obligations, thanks to Barbara, our relationship is finally free to evolve beyond all that. Dad sits back on my sofa and we talk. He likes to converse. I ask him about the past. He tells me about his childhood, his relationship with his parents, what it was like when he met my mother, and—most startlingly—how sometimes he thinks back on their marriage fondly.
He’s become philosophical, and a better listener (with hearing aides, that is). Dad talks to me like an old friend, no longer a problem he must solve. And I no longer feel threatened.
“It’s risible,” he grumbles one afternoon, with a chuckle, still impressing me with his vocabulary, “when people tell me, ’Eighty-one? That’s not old!’”
“As if ’old’ were a dirty word,” I say.
“It’s the patent absurdity of it! Eighty-one is old.”
It’s become a regular part of his curmudgeonly idiom, scoffing at the silly pleasantries people utter absentmindedly. But this time, to me, he’s struck a profound chord. How many times have I heard niceties such as, “We’re all disabled in some way” or “I don’t even think of you as disabled”? They’re intended to convey kindness and acceptance, I guess, or to cheer me up. To my ear, though, they always sound squeamish, as if the concept of disability were so distasteful you have to sugarcoat it.
I ask Dad if this is what he means and he denies it. Still, I can’t shake the sense that he feels patronized, even insulted, by such remarks. Haven’t I heard him lament that he shouldn’t have to “think young,” as strangers keep commanding? He says he’s entitled to move slowly, to spend long afternoons in a rocking chair or need a seat on a crowded bus or even doze off in the theater—without feeling guilty about it. “Sloth,” he’s joked, “is no longer a sin at my age. It is a well-earned privilege.”
Dad is just being witty, I’m sure. Yet, in his old age, he and I have a lot more in common than either of us has ever realized before.
“Do you ever run out of stamina?” he asks me. “It’s hard for you to work all day, isn’t it?”
“Not when I’m writing,” I answer truthfully. “Running around, meeting people—that tires me.”
Though neither of us says it, I believe we share the idea that my writing from home instead of working in a busy office might’ve been the right job for me after all.
***
There’s one more loose end. ML has been on leave from work since her abrupt departure nine months ago when I was hospitalized. She, too, uprooted to be by my side! And now we’re both a little nervous about what comes next. Am I really stable enough for her to return to work (if she even has a job to return to)?
I have to wean myself off ML’s custodial care just as I did the ventilator and all those meds—and I suppose she must wean herself off of caring for me so intently.
With my new attendant, I reassure her that I’ll be okay and she should go back to work. Reluctantly, she approaches her old boss. The boss is welcoming, but the business has changed. The shop is now half what it was. It’s become a high-end stationery store and nothing more. Not ML’s favorite part of the business.
But next door, in a space the old store used to occupy, a new gift boutique is opening. And there ML finds some of the same kind and stimulating people, the same aromatic candles and winsome decor, she knew from before. She’s hired on the spot—just a few days a week at first, but that soon grows to as many hours as she wishes.
In summer, Alec and his wife and their two daughters visit from New Jersey. We meet at Universal Studios (their idea). It’s been two years since I last saw his family—and I haven’t seen him since the hospital—but after remarking on how the kids have grown, etc., we fall into place, into our traditional roles.
In the slow-moving ticket line, I confront Alec about something that’s on my mind. “Buzzy, we might be here all day. If I need to go to the men’s room, you’ll be able to help me, right? I realize it’s something you’ve never done. Mom and Dad always tried to protect you from feeling responsible for me—”
He squints as if trying to comprehend, but maybe it’s just the sun in his eyes. “I’ve never done that,” he says. “You . . . you want me to hold your dick? You’ll have to tell me how.”
Buzzy is still Buzzy. But he’s not stupid. He understands my request, that it’s logical and reasonable. I don’t take him up on it, however. I monitor my liquid intake throughout that day, though it’s blazing hot. Still, maybe next time. If I can articulate my unique perspective, my specific access needs and frustrations, he might be receptive in a way he couldn’t be as a boy.
These days, I have one full-time attendant during the week and three part-timers to cover evenings and weekend mornings. But any day, any one of them could show up late or not at all. ML still fills in a lot—I suspect neither of us would be comfortable doing otherwise, at this point—and works a five-hour shift five days a week at the shop. (I wonder how her version of these events would differ from mine. She declined my offer to preview the manuscript.)
Our girls—both teenagers now—amaze me daily with their intelligence, talent, and beauty (and height!) . . . though you never stop worrying.
The progress of our lives can be derailed at any moment—by another medical emergency or, for that matter, any number of other disasters. They are merely interruptions, I believe. So far, I’ve always been able to bounce back.
And indeed, ML and I are both growing older, more fragile. Yet whatever happens, I know we’re a good team. Deep in my osteoporotic bones and atrophied muscles I feel we were designed for each other. We keep planning, mourning what’s lost, celebrating what’s gained, and then going on. That’s just the way our lives are.
Try not to be too jealous.
Acknowledgments
Thanks go to Skyhorse’s Tony Lyons—my old pal—and Yvette Grant for their invariable and undeserved kindness, clarity, flexibility, and understanding.
To my indefatigable agent Lauren Galit, this s
imple appreciation doesn’t do justice. Lauren, you are unmatched in loyalty, steadfastness, and plain-speaking honesty. I don’t know why you stood by me all these years, but I’m glad you did!
Others in the biz were also crucial in their individual, encouraging ways. Among them: Jennifer Lyons, Bonnie Nadell, Diane Mancher, and Lynn Goldberg.
I owe a great debt to Lillian Trilling for keeping me sane by helping me tease out the various insanities that were clogging my brain. Honorable mention goes to Danny Rothenberg for “getting it.” And of course—beyond family and friends (Facebook friends, too!) who’ve stayed in my corner sometimes against all reason—I must thank countless others both within and outside the disability-rights movement, others too numerous to mention.
The influences on this work are also myriad. Let’s just say if I hadn’t read Frank McCourt and Mary Karr and Augusten Burroughs and on and on, I’d’ve been surely lost.
