Miracle Boy Grows Up (32 page)

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.

***

T
here’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.

T
hanks 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 simple 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.