Miracle Boy Grows Up (28 page)

I’d considered mouth controls at Rancho, as I’d seen many quadriplegics use, Christopher Reeve being the best known. There are basically two types—first, sip and puff, for those with scarce facial movement but who can suck and blow on a tube; second, a joystick that’s positioned near the face instead of at hand level. The sip-and-puff type allows you to set a direction and speed, whereas a joystick is “proportional,” enabling subtle gradations in both speed and direction.

I’d resisted either option. I didn’t want a control literally in my face. Studies had shown a greater stigma attached to disabilities that were visible from the neck up; in fact, the least disturbing disability to the general population was supposedly low-level paraplegia—in other words, those wheelchair jockeys who had muscular torsos on top of thin, nonfunctioning legs. Hence, the cognitively or psychologically disabled were unfairly considered the lowest on the totem pole.

Which is the stupid reason I’d stuck with a hand control, knowing it might not work for long. At the same time, I saw a revolutionary new mini-joystick, invented in Belgium, that utilizes magnets instead of springs and, therefore, requires an absolute minimum of muscle strength to control. The device was so small it could be installed anywhere on a wheelchair. I should’ve gotten it then, but it costs about $3,000.

This, I figure, is what I need now.

With Dad semi-retired, it’s my stepmother who’s footing my medical and attendant bills. Even though she’ll retire soon, too, she has a nice pension and has saved and invested wisely. So once I explain the situation, the funds are forthcoming.

Truly, I am lucky among cripples!

When the mini-joystick comes, I foolishly insist on installing it at hand level, not mouth level. I still have just enough wiggle left in one finger to activate it, I figure. But the installation takes so long ML has to leave me at the wheelchair tech’s to go pick up the girls at school.

When we finally return home, I’m able to swing into the elevator without assistance—then, backing out, I find I need a pull from behind. Better but not perfect.

What follows is a lengthy, laborious process of customization at home— so finely tuned and patience-draining that the wheelchair techs would never do it. These kinds of adjustments can only be done at home, with constant tweaking—sometimes at five-minute intervals. Tighten here, loosen there. Move it up at the right—no, that’s too much . . . My body is inconsistent, unreliable.

My wife seems indefatigable, even when I lose it. And at times the resemblance between myself and a slave driver is incontrovertible. I do not give up! I will make this chair and this $3,000 control system work!

If I thought the questions about minimum doorway width and such that Harvard presented before my arrival were grueling, this is geometrically worse. Which angle is best for my baby-weak hand? Does the shirt I wear make a difference, because of the weight of the sleeve? What about the effect of weather? (My fingers always freeze up when the slightest bit cold.)

The mini-joystick is so sensitive that standard joystick tips are too heavy. It comes with its own—a choice of a pinky-sized rubber suction cup or a cork ball no bigger than a marble. I can’t decide which I like better—the cork marble extends higher than the rubber concavity, but my finger rolls off its sleek surface. So ML and I get the idea of making our own cork tip. She pops open a bottle of wine and, after a healthy belt, starts whittling the cork.

Over the next several weeks, I collect corks of various shapes and sizes, testing each one on the joystick. And not just from wine bottles, either; Chimay and other imported ales come with a cork stopper, too. (Chimay, being from Belgium—like the mini-joystick itself—seems particularly fitting.) A rough surface gives better traction than a smooth one against the pillowy tip of my middle finger, I discover. A sharp edge gives leverage.

It’s maddening, all this fine-tuning. Yet what gives me emotional strength through it—besides raw necessity, the need to get it right or be immobilized— is the memory of past successes. With determination, we’d managed to have kids after four years of infertility. I’d managed to tame the breathing problems that had been plaguing me. A similar sense of mission had seen me through finding work, even if not enough of it, and, well, to finding love. In fact, my very survival owed a great deal to perseverance—the notion that problems are merely puzzles waiting for a solution.

Honestly, though, survival takes more than gumption. Flexibility is definitely part of the mix. In the end, I can make the chair work if someone positions my hand exactly right. Good enough, I convince myself. You can’t wait around for perfection.

My stubbornness in preferring a hand control to a mouth control will get the better of me, however. I become increasingly homebound, afraid to try to move long distances. We stop taking walks around the neighborhood. The Internet becomes my social life. I’m afraid to visit the girls’ schools without assistance. I avoid most social contact outside of home. And I crash into furniture and doorways a lot.

When I do have to go out, ML assists with the chair. It’s a big tank of a thing, and not easy to push, so she tries to drive it with the mini-joystick—and frequently runs into her own shins! Ouch! This goes on longer than I’d like to admit.

***

O
ne of the doctors who’d examined my hand after the thumb-slipping incident noticed something unexpected. My bones were dangerously thin, she’d said.

I had enough on my mind already. But eventually I bring up the question of premature osteoporosis with my primary physician—an HMO gatekeeper whose sole usefulness to me is authorizing referrals to specialists. “Eat Tums,” he suggests blithely, “and here’s a prescription for Fosamax.”

Fosamax, in case you’ve never taken it, is a tricky drug. You swallow the pill once a week on an empty stomach—that is, first thing in the morning—and must stay upright without eating or drinking (except water) for a half-hour afterward. In other words, you have to be out of bed and
not
have coffee. Talk about torture. But I obey. I have bigger worries on my mind. Like how I am going to keep driving my chair.

Come spring, which is roughly six months later, I suffer terrible abdominal pain and rectal bleeding. The HMO doctor—who resembles the love child of a Nilla Wafer and a marshmallow, unfortunately—declares it hemorrhoids and recommends Preparation H. I wonder if he’d’ve been so blasé if I were able-bodied.

This is the last time I see or talk to this particular doctor.

I call ML’s physician for a recommendation of a gastroenterologist. And I stop the Fosamax because I’m sure there’s a connection. The recommended gastroenterologist—a friendly, bookish African-American guy in his forties— won’t confirm the connection to Fosamax but recommends a colonoscopy. Let’s fast-forward to the results: I have ulcerative colitis. It’s not deadly but it’s also not curable. It is, however, treatable. It’s also something that seems to run in the family—my big brother Alec received the same diagnosis a year or two earlier.

I’m put on a litany of medications, on top of the respiratory and allergy stuff I’ve already been taking. Interestingly, steroids figure into both. Ulcerative colitis and asthma are both thought to be caused by a hyperactive immune system; if the steroids can keep the lungs and colon from becoming inflamed, the logic goes, my body won’t respond by “attacking” them with painful contractions and a shitload of mucus.

Each ailment, though, takes something away. One by one they age you. Beyond whatever harm the disease itself can do, there’s an impact that leaves you feeling forever winded. Then again, at least it isn’t cancer. I tell myself this over and over. Still, I can’t help at times feeling reduced to a needy, tormented geezer—my crip destiny catching up with me, a fate I can’t escape.

I’m nearly forty-three, the age Mom was when she was first diagnosed with the cancer that took her life four years later. So I feel old . . . but sort of fortunate, too.

***

M
y work for financial magazines dries up. Though my earnings had doubled and redoubled over the past few years, the bursting of the dot-com bubble has put everything on hold or on the chopping block. I get assignments, but only occasionally. I take on a few writing jobs for the disability press, work I’d’ve snubbed a short time ago because it pays only a quarter of my old rate— plus, let’s be frank, it seems to lack cachet. I don’t want to be a professional cripple—someone whose entire skill set revolves around a single biological attribute. I don’t want to oversee diversity at some corporation or university, or be an ADA compliance officer or employee of an independent-living center. Noble professions, all, to be sure. Only not for me. Similarly, I don’t want to be a disabled writer who writes exclusively about disabilities.

Instead, given the spare time I have, I draft a novel about Wall Street excesses. I want to use what I’ve learned. I send the manuscript to a few agents, but nothing comes of it.

My bum hands make using the computer mouse more difficult than ever. For as long as there’s been Windows, I’ve been using a small rollerball device that Microsoft used to make. I even went on eBay once to order as many Microsoft ballpoint mouses (mice?) as I could find. But now, even the small degree of movement
it
requires is too much for me.

The Dragon voice program does have mouse commands, but they’re imprecise. And you need a mouse click to start Dragon—or, more problematically, to get it restarted when it crashes. It crashes regularly, though that may be because I like to have many windows and programs open at once.

There’s another, more embarrassing reason I need to find a new mouse. As I’ve said, I’m having more spare time. And I’m staying home a lot more than I used to. So I’m staying at my computer a lot, with little to do. I do a lot of creative writing, but there’s still time left over. So when the girls are at school and ML is running errands, or when she takes them to the park—in other words, when I’m home alone—I occasionally surf porno. After a while I become somewhat addicted to it. I have so few secrets, so little privacy, I figure I’m entitled.

With ample experimentation I discover—now that my hands can no longer manipulate my dick through my clothes—I can actually masturbate hands-free.

It takes a lot of porn, concentration, and time—and just enough strength to clinch up internally and make my dick wiggle against my shorts—but it works! It’s like a wet dream when you’re awake . . . only better! (Take heed, adolescent quadriplegic boys everywhere: It is possible.) The greatest discovery since, as a kid, before my back surgery, I learned I could suck my own dick.

But when you have too many windows open on your computer at once—and some of them are linked to questionable websites—you run the risk your computer will freeze up or crash. And with no ability to click out or restart, you’re stuck. Until help comes along. In my case, that’s usually my wife, though sometimes I call the building’s maintenance man (the remote phone switch I have now automatically dials the operator, who connects me with any local number for free).

When help comes, there you are with the embarrassing evidence of your masturbatory voyeurism frozen on the screen . . . for all to see. It’s important to the enjoyment, however, to preserve the guise of privacy—so if you’re like me, you make up a simple, plausible excuse like, “Damned pop-ups!”

So: Must buy a new mouse to save me from these and other embarrassments.

I search online. This is harder than it might sound, and not just because of the variety of high-tech equipment. For me, it requires intense honesty and self-reflection. I still think of myself, at times, as “the boy who can’t walk” or “the boy in a wheelchair.” In other words, my legs don’t work. In truth, my arms never worked all that well either, and now my hands are crap. As with my job search early on, I must face facts about the extent of my impairment.

So in the end I resign myself to a mouth-controlled computer pointing device. There are several brands—basically joysticks you can move with lips and click with forced puffs of air. Only one costs less than a thousand dollars, however. It’s only $800 plus shipping and handling.

A local dealer sells me his old demo model for a hundred. I take it home and try it.
Voila
! Like magic. Now I can truly operate the computer totally hands-free! Porn sites and all . . . which are suddenly much less appealing.

***

B
ut money remains tight. I rely on credit cards more than I should. Even my monthly checks from Social Security abruptly stop coming. Worse than that, I receive an unbelievable notice to reimburse the agency for overpayment!

I’d been receiving benefits I didn’t deserve, apparently, for the past several years. Social Security wants me to pay back no less than $70,000. I can only laugh. $70,000! What’s really funny is, I’d been telling Social Security it was overpaying me for years.

Years earlier, not long after ML and I tied the knot, when I was embedded in the disability-rights movement, an activist pal had told me to keep my wedding a secret or face the consequences.

“Too late for that,” I’d scoffed. I’d already written about being married in a few of my published pieces.

“Be prepared for a big, nasty bill, then.”

As my late friend Barbara had put it, it was the marriage penalty—not unlike what caused her to postpone her own wedding. The checks I’d been receiving since college—since Mom died—were Social Security Disability Insurance Survivors Benefits; only
unmarried
survivors of deceased parents are eligible.

Once I heard this, I debated what to do. I figured I was already in hock for something like $7,000—why go to Social Security and invite trouble? So I tried saving my monthly checks in a separate account. That way, if and when Social Security got wise, I’d have a chunk of money ready to send in. But alas, I only managed to save a few hundred bucks.

Plan B (or my “second plan,” as I might’ve put it in a story to my kids) was to tear each new check in half and send it back. This almost worked. (I should’ve known better; second plans never work.) Social Security responded with a letter asking for an explanation. Which I answered promptly and candidly. I said I could no longer accept benefits because I’d been earning more money—and was married.