by Ben Mattlin
Eventually I talk her into a short spell of marital counseling. “Why does nobody give me credit?” I ask in the protected enclosure of the therapist’s small office. “Everybody can see what ML brings to the relationship, but my contributions are less obvious. I handle the finances, the social calendar. I’m the anchor and the planner. I’m the motor that keeps us moving upward and onward. And frankly, I put up with her shit, too. . . No, I don’t want a medal. Just recognition.”
“And what do I get?” ML responds. “It’s never enough for you. What more do you want from me? No, I’m not a saint. If I were a saint, this would be easy. I’m just a hard-working wife and mom.”
We agree to do a better job of validating each other. Which, of course, only goes so far. After our second session we come home to a particularly horrific quarrel. I don’t remember now what it was about. What’s crystal clear in my memory is how it ended.
After the squabble, while Paula is still at preschool, we make love for the first time in months. A few weeks later ML realizes she’s pregnant.
Miraculously (aren’t all babies miracle babies?), our fighting stops. Just like that. Like magic. Sure, some of this détente could be because I again have to hire more attendants, so I’m not left feeling so helpless and needy. And there’s nothing like being pregnant to give a woman a sense of purpose and direction. But at any rate, this is the chain of events that puts an end to our torturous interdependence at last.
Come 1999, when I’m thirty-six, I’m completely oblivious to the watershed Olmstead decision of the US Supreme Court, which will free many disabled poor from forced institutionalization and springboard efforts to reform Medicaid. It’s all the buzz among the disability-rights set, but I’m busy. I’m still nesting.
Miranda is born in the spring.
CHAPTER ELEVEN
THE BUBBLE BURSTS
2001-2005
“Tell so much of the truth you can’t afford to have anything not true because it spoils the taste.”
—Hemingway’s letters (1926)
***
One evening, in the half-light of the girls’ bedroom, I’m telling a bedtime story when my thumb slips off my wheelchair controller. The girls are curled up together on the bottom bunk—Paula, age seven, will climb to the top when it’s lights-out—and I’m parked beside them. Scooby and the gang are frantically trying to capture the harrowing Pillow Monster . . . who threatens to bore them all to sleep. Our heroes are already on their second plan, and as the girls have learned by now, second plans never work! Only third plans do, and for that, the “Scooby friends” typically request a suggestion from the audience.
So when I pause to address Paula directly, she naturally assumes I’m asking for the third plan. But Miranda, only four, interrupts. “I know,” says Miranda. “Why don’t they ask the purple bat thingy!” Fingy, she pronounces it. (So cute!)
Miranda’s been obsessed with this “purple bat thingy” since watching some god-awful video. My stories are much better, but I haven’t fathomed this purple bat thingy.
“Miranda,” shouts her big sister, “not again! What they should do is, they should capture the Pillow Monster by offering it some candy and then calling its mommy.”
“Okay,” I say, unable to enjoy this banter as much as I’d like because a frisson of panic has shot through me, “but Paula, I was going to ask you something else.”
I ask Paula to lift my right thumb back onto my chair’s T-bar joystick. She’s grown used to helping me drive my chair; my hand has continued becoming weaker and weaker. I can no longer steer left or navigate backward. At times I have her sit on my lap and just take over. She’s learned to be careful.
This evening, Paula crawls over her sister, stretches toward me, and places my thumb where it should be. I can’t keep it there. It falls again!
I pretend nothing’s wrong and finish my story as quickly as I can. I have the purple bat fingy lure the monster with a plate of candy to where Pillow Mommy is waiting with open arms and the all-important, hard-heart-melting reminder that he’s loved. In a twist on the traditional Scooby story, the monster is so touched he takes off his own scary mask to reveal the true, comfy, loving pillow beneath. The end. Lights out. Sweet dreams. You two are the best.
I have Paula give me a push backward as she climbs up to the top bunk, and I’m able—just barely—to round the corner back to my room. Where ML is reading in bed. “My thumb,” I say plaintively.
She tries to lift it just as Paula did. It falls again. The bone-chilling realization sinks in: I’ve lost strength in my primary digit, the one I’ve used to drive my chair, roll the trackball mouse on my laptop computer, etc.
***
Once again, I seek expert advice. My beloved miracle-working allergist recommends a rheumatologist, who in turn refers me to a hand surgeon. All of whom blame my thumb’s desertion from the dwindling troop of useful muscles left to me on my “basic underlying neurological condition”—namely, spinal muscular atrophy. But I’ve never known a body part to just up and fail so abruptly. I refuse to believe it’s due to SMA. The culprit must be something new. Something new and terrible, but perhaps treatable.
While an orthotics rehab therapist tries to fit me with a custom-made thumb brace (which doesn’t work), I make an appointment with a neurologist who knows about SMA. Not Dr. King Engle, who isn’t available for several months. Someone at UCLA, which has a rival “muscle clinic.”
The UCLA neurologist—spookily named Dr. Graves—does another round of EMG shock tests and confirms that SMA is probably the cause of my current complaint. I’m now over forty, and SMA is still rearing its ugly head.
You’d think I’d be used to it by now. And that thought alone gives me comfort, actually. Just when I can’t take any more . . . any more weakness, any more limitations, any more atrophy . . . I realize I can and I will. Because I always have. I always do. I have no choice.
Eventual acceptance gives a degree of relief. It is what it is, and at least I know there’s nothing I can do about it now. Nothing I could’ve done about it ever. I have to accept it. Another small but crucial piece of muscle is gone. End of story. Move on.
This phenomenon falls under the gloomy category of Aging With A Disability. I’d known this day might come—once I’d discovered my muscles were still capable of atrophying—just as I know I might someday need to hook a ventilator to my wheelchair. As my late friend Barbara had said, you plan ahead for future deterioration even as you mourn each loss. Plan and mourn: the two go together.
In a sense, I’d planned for this when I got my current wheelchair a year ago. I’d looked into alternative driving controls then. I’d made a point of choosing the chair carefully—one that could work with the latest high-tech accoutrements, unlike its predecessor, which was whatever model the salesman had said was best. This time, as an enlightened cripple, I’d gone to Rancho Los Amigos.
Rancho is a big rehab facility south of LA, famous among local crips in part because of its extensive, well-staffed wheelchair clinic. Wheelchairs aren’t like cars. Most have to be special ordered, and few can be test-driven. At Rancho, I was at least able to see several different varieties. I was given options. When I was a kid there weren’t any choices other than upholstery color. Everest & Jennings was the only brand. Nobody uses E&J anymore, and I’m not even sure it still exists.
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.
***
One 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.
***
My 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 w
riter 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.
