Miracle Boy Grows Up

by Ben Mattlin

  What’s more, as the Internet bubble pushes the stock market ever higher, and demand for Wall Street news surges, I’m able to parlay my growing portfolio of published clips into opportunities at other personal-finance magazines such as Individual Investor, Online Investor, and On Investing—all of which would evaporate a few years later, when the bubble bursts (Buy Side, too, eventually).

  But in these dizzying Clinton years, I think how just a short time ago, when I’d lost partial use of my hands, everything I did was for the disability-rights movement. I was completely immersed in cripdom. My sense of identity is upended now as I don a yuppie guise—and become a handicap hider.

  ***

  In 1996, when Senator Bob Dole runs against President Clinton, it’s a historic moment for people with disabilities. No one with a visible disability has run for the high office since Franklin Roosevelt—and unlike Roosevelt, Dole is forthcoming about his impairment (an arm injured in wartime). It sets a political conundrum for some in the movement: Dole may be one of us, and may have been an early supporter of the ADA, but aren’t Democrats better for disenfranchised minorities?

  That same year, a woman with Down syndrome becomes the first person with that diagnosis to receive a heart and lung transplant. She’d been turned down at first, but hospital administrators cave to activists.

  These and other milestones occur out of my tightening loop. Work and home life have become my all. “I’m nesting,” I say when asked.

  Once a month, I still attend board of directors meetings at the independent-living center. But my involvement is only fragmentary; doubt about its priorities and relevance are filling in the spaces. One gripe: too much emphasis on fundraising these days, due no doubt to government cutbacks.

  One Saturday afternoon we’re called in for a special meeting to discuss a development campaign. The executive director—an effective leader and devotee of the movement, who is nonetheless a bore—challenges each of us to name five people we can contact for donations. I get a sour taste in my mouth, but come up with my list. I even write my own dunning letter, conjuring up what the place should be, could be, used to be, and maybe would be again with adequate funds. My heart’s only partly in it.

  Why give to the ILC? Because it has such thought-provoking forums, which have changed my life? It hasn’t had one in a year or more. When the budget became tight, forums weren’t considered essential. Because it maintains a registry of potential personal-care assistants? Ever since I found Roger through the the registry, before Paula was born, it hasn’t been kept current. Many phone numbers are out of date, and most of the candidates are women, whom I never use. Because of the disability consciousness it raises? Alas, it’s become too dependent on government funds to be as politically active as it used to be.

  Besides, I’ve grown tired of the monolithism of the activist movement—the approach some leaders have adopted of speaking for the entire disability community, no matter how many other folks with disabilities may disagree. Usually I concur with these leaders, but not always. Take assisted suicide, for example. I continue to believe its legalization would be dangerous for people like me, but I’ve met disabled people who would become suicidally depressed if the opposite occurred— if the theoretical option of assisted suicide were taken away. Don’t they count, too? Like many movements, “official” doctrine is trying to dictate what people should think, denying what many members actually feel. Which pretty well sums up why I’ve never been a joiner. I fear the group will wipe out individual dissent.

  I also stop writing for the disability press, though for different reasons. I turn down assignments because they pay too little compared to what I’m making as a financial journalist. I’m still not working full-time, but rarely have enough spare time to justify extra low-paying work.

  Beyond all this, the local disability community is splintering. Few of my activist friends are still around. For instance, Paul Longmore has become a professor at Stanford and, later, San Francisco State. Soon, my friend Barbara will move North, too—to be with her husband.

  Barbara’s wedding is a big deal. Or should I say her weddings (plural)? A while back, Barbara and I had a long conversation about her piss-poor odds of ever finding a husband. “I’m a disabled woman in my forties,” she’d argued.

  “So what? Forget the statistics. The statistics are about other people. They’re about the past. Past performance isn’t an indicator of future returns.” That last being a phrase I’d picked up from the investment business.

  “There’s a stigma,” she’d insisted. “To available men, I’m damaged goods.”

  “I’d marry you, if I weren’t already married.”

  “Don’t go there. I’m serious.”

  Sure enough, a few months later she met another activist—a man who had survived childhood cancer and now walked—and sometimes sat—with difficulty. His spine was deformed, and I don’t know what else.

  When they decided to get married, they faced a bureaucratic obstacle. Medicaid and its concomitant In-Home Supportive Services—a California program to help pay for attendants—places a limit of $2,000 on each recipient’s savings (which is why I never qualified). But if two recipients marry, their savings threshold doesn’t double to $4,000; it’s reduced to $3,000, or $1,500 per person.

  “We can’t afford to get married,” Barbara complained, fairly and accurately, “because of the stupid marriage penalty.”

  So the wedding was postponed. Eventually—and I don’t know how they did it—Barbara and her fiancé, Dan, got an exemption. So they held one wedding ceremony as a kind of political event, complete with press coverage, and another just for friends and family. Actually, there might have been two others—one in southern California and one in northern California. I’m not sure. ML and I go to the one in LA It’s an evening service and reception. Barbara dressed up her wheelchair with regal white fluffy stuff as well as wearing an elegant gown herself. Disability style, it occurs to me, is something each of us, individually, creates every day.

  The invitation said adults only, so we’ve left Paula home with a babysitter— for the first time. A fact that makes ML grumpy. “I feel like I’ve left my right arm behind,” ML says when asked how she’s doing.

  A few years later Barbara and her husband die within a month of each other. He’ll go first, from a resurgence of cancer. She from a ventilator malfunction.

  Ostensibly. But I think it’s at least partly the exhaustion and deprivations of grief.

  ***

  Two years post dumping Jorge and (once again) declaring independence from paid staff—two years of having no one assisting me other than my devoted but overstretched wife—you’d better believe sparks fly in the home fires. At first, to be sure, being on our own was fantastic! The freedom to be naked in daylight hours! To eat in bed in front of the TV (Sesame Street and its ilk, of course)! Plus no more attendant who can’t drive me anywhere without rolling down the windows to make catcalls at passing women. No more hyper-sensitive hired helper who picks up lunch at McDonald’s every day and feels insulted when the groggy clerk doesn’t understand his loudspeaker order for a “feesh fill-ette.”

  But all good times must come to an end, yes? So now tensions are rising. On the one hand, ML, at thirty-eight, tires of constantly balancing conflicting demands. And I, on the other, currently thirty-five, miss having someone to boss around, someone to complain about and make fun of behind his back. (That’s only partly a joke. Of course it’s the sense of independence that I miss most of all.) ML’s working awfully hard, with nary a break. But she’s not all mine, like a hired person; I’m having to make do with less help—or less attentive help.

  If anyone had asked, and we’d thought about it enough to answer honestly, I’d like to believe we both we’re secretly thinking, or praying, When will this temporary arrangement end? How will we transition out of it? What’s our exit strategy?

  But as usual, we soldier on devoted to our dream of doing it all, or ignorant of
any viable alternatives (if, indeed, there were any). I recall one morning when I needed help dialing London (both my computer dialer and the state-sponsored free operator assistance can only handle domestic numbers). Paula, at eighteen months, is joyfully and—for all we know— dangerously tearing apart the kitchen. So ML quickly dials for me and then rushes to Paula.

  When I get hold of the British stock analyst, I can interview him on my own but need wee Paula to be quiet. There’s no door to close off my corner of the living room or, for that matter, the kitchen. It’s really one big open space.

  So that becomes ML’s job of the moment—shushing the toddler. But she can’t take Paula outside because (1) neither one of them is dressed yet, and (2) I might need her help again when I’m off the phone.

  ML tells me later that when she enters the kitchen she’s shocked to discover Paula’s happily munching on a stick of butter . . . right out of the fridge! “I started to scream,” she relates, laughing at the serendipity, “and then I thought, well, it’s keeping her quiet. And it’s not exactly poison. Fat is supposed to be good for babies’ myelin sheathing.”

  And so, we cope. Yet another time, I go for a meeting at a fancy downtown office. ML has to drive me. It’s a big money-management firm, with offices worldwide, and I’m the interviewee, not the interviewer; it could lead to steady work.

  When we arrive on the fifteenth floor (I don’t actually remember the exact floor number, but it was high for LA), the receptionists are thrilled to see a baby in the office! But I shoo ML and little Paula away as quickly as possible. Don’t want to look unprofessional.

  Afterward, I’m stuck in the lobby for an hour because ML is late picking me up. This is before we both carried cell phones.

  When she finally arrives, she flatly explains, “We were nursing.”

  It’s a phrase I hear a lot. “Where? In the van?”

  “Yes. We were parked just around the corner—”

  “Couldn’t you have, you know, paused to come get me?”

  “Well, you didn’t want us around. You didn’t want anybody to see the shame and embarrassment of having a nursing baby along, so …”

  The interview, by the way, gets me a freelance assignment but no steady work.

  ***

  Soon Paula starts preschool, which is a sort of break. Most mornings ML stays with her, but sometimes she drops me off with Paula and gets some time alone. The other preschoolers don’t seem to notice the daddy in a wheelchair, though I feel awkward, especially when they’re doing a hands-on art project and I can’t help. Teaching Paula self-reliance, I rationalize.

  Not surprisingly, little Paula starts picking up germs. Every few weeks she gets a small cold, which rarely lasts more than a few days. Because ML taught elementary school for ten years—can it be so long?—she’s immune to most of these bugs. I’m not. I get sick at least every two months. And when I get sick, my very life hangs in jeopardy.

  The colds themselves aren’t so bad. Usually they’re gone after two days. But they touch off a terrible hailstorm in my lungs. By the third day I can barely breathe. There’s asthmatic tightness plus a thick gumbo of phlegm clogging the passageways. Because of my SMA, I haven’t the strength to cough up even a little. If people with SMA die, this is usually the reason. Their breathing fails.

  The day after Christmas I’m rushed by ambulance to St. John’s hospital in Santa Monica. Breathing is so rough I’m in a panic. My trusted doctor has retired, and his replacement can only see me at Cedars-Sinai, in Beverly Hills, which is too far for the ambulance. But he has an associate at St. John’s.

  In the emergency room I’m given a nebulizer with albuterol mist to breathe in. It helps for a while. ML is there, of course, baby in tow. But later, I’m transferred upstairs—and swiftly forgotten. My hospital bed is left in an empty room with the door closed. ML has taken Paula home and I, lying there, have no way of getting anyone’s attention.

  I don’t know how much time passes, but eventually I’m found. My breathing is shallow and I have a fever. A nurse struggles to put an IV in me. My veins keep slipping away, unsupported by muscles as they are. Or maybe that was earlier, in the ER, before my abandonment. I’m disoriented. The next thing I remember is the BiPAP mask—this big scary gizmo two or three big scary guys are trying to force onto my face. I can’t say “no” loud enough, so I fight the mask with my tongue, pushing it away while it blows on me. I’m convinced that if it blows into my mouth it’ll kill me. The big scary guys back away.

  But later I awake and I’m hooked to a machine. Whether it’s a ventilator or something else I can’t say. I don’t like it, but for two or three days I lie there and accept it. Eventually I meet the doctor who’s a friend of the doctor who replaced my doctor. He makes zero impression on me.

  I’m in intensive care for several days. ML visits all the time. She parks Paula in front of a TV in the waiting area, and they take frequent trips to the cafeteria and the Christmas tree in the lobby. I overhear one of the ICU nurses quizzing ML. “You are his wife?”

  “Yes.”

  “And that is your daughter?”

  “Yes. Why are you asking?”

  “His daughter, too? Or you had another—?”

  Unbelievable! I hate hospitals. No, I hate the people in them. Some of the people. I hate the way I’m treated by . . . what? . . . medical lackeys. The overworked, under-educated hospital staff. Stripped of the normal accoutrements of my life, I become the most pitiful of patients, to them. No one can see me as anything else.

  Slowly I improve. I’m moved up to a double room in a regular ward. My roommate is an old man who has pneumonia. One evening I ask ML to put on the small bedside radio before leaving—soft, classical music, I suggest, so as not to be offensive. An hour later or so my roommate complains. “What’s that racket!”

  I apologize but he can’t hear me and neither does the nurse.

  I’ve been put on so many antibiotics I’m shitting my brains out (though I’ve had no solid food). Late that night, I try to call a nurse for the bedpan, but they never hear me (and my roommate, now sound asleep, is no help either). When a crew making rounds finally notices me—well, doubtless what they notice is the smell—they clean me up and change the disgusting sheets I’m lying in. “We should get him a diaper,” one of them tells the other.

  “No,” responds the other, mercifully. “He doesn’t need a diaper.”

  It’s been five days, and lying in a hospital bed isn’t good for me. I can’t eat unless I’m sitting upright—there’s no one to feed me anyway—and I keep being left in uncomfortable positions.

  “Every time I leave you you seem fine,” says ML, “but when I come back they’ve got you in a terrible position and you look awful again. Until I fix you.”

  “They won’t listen to me,” I say. And it’s true.

  After a week the personality-less doctor says I can go home as soon as I’ve reduced my steroid intake to a manageable level. I could’ve left today if I hadn’t already had the high dosage. “But tomorrow,” he says, leaving me hanging there.

  The next morning a nurse comes around with my meds. I ask her what they are. Damn, if she isn’t about to inject me with another hundred milligrams of the steroid, prednisone! “No,” I insist. “The doctor said I need to reduce that today.”

  Fortunately, ML is standing bedside that moment to vouch for what I’m saying. The nurse heads off to check her instructions. While she’s gone, Paula plays with a roll of surgical tape and ML teases me about having a cross on the wall over my bed. I’m thinking about how on-the-ball and assertive you have to be even (or especially) when you’re dead sick.

  The nurse comes back, thanks me for setting her straight, and administers the correct dosage.

  Once home and fully recovered—which takes the next two weeks—I begin to search for a new doctor. Over the ensuing months, which become years, I go through several physicians, each of whom prescribes a different regimen of inhalers, nasal sprays,
and allergy pills. I should mention that I’m now paying for my own HMO, which limits the selection of doctors. In any case, I keep getting frequent respiratory infections—including one bout of pneumonia, though I manage to stay out of the hospital this time.

  Finally, an article about the amazing asthma solutions at the National Jewish Health Center in Denver inspires me to phone for a referral in the LA area. From my first visit with the recommended physician—an allergist, whom I’ll have to pay out-of-pocket until I can swing official HMO approval, but I’m too desperate to wait—I feel I’m in good hands. He changes all my daily maintenance prescriptions, and sure enough, the cycle of bronchial agonies ceases. Maybe it’s a coincidence, but I give him full credit.

  I still get sick, of course. And every time I’m in danger of respiratory failure. But now it averages only once or twice a year.

  ***

  When the illnesses taper off and ML and I are no longer in crisis mode, an emptiness moves in like the evening fog. Soon Paula will be in kindergarten, leaving ML open-ended. She’ll have time, but she won’t in a way, because what if Paula gets sick and has to stay home? Or what if I need her? She still doesn’t want to go back to teaching. She doesn’t know what she wants to do.

  My work continues, though at a more relaxed pace; somehow I’d managed to keep up despite my frequent illnesses. I did a lot of work from bed and at odd hours—waking early to call Europe, staying up late to call Asia. I’m not sure I could’ve done it—survived my health problems or accomplished so much—without ML’s indefatigable assistance. Yet at the same time, our complete lack of privacy from each other—of time apart— has become unbearably grating.

  Loud, nasty arguments pile up like multicar collisions on the freeway— frightening, irritating, damaging, and blocking forward movement. I recall thinking aloud once how awful it is to be dependent on someone with whom you’re fighting, and ML’s retort that having to help someone who’s pissing you off isn’t exactly a picnic either.