Miracle Boy Grows Up (27 page)

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.

***

W
hen 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.

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.

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)

***

O
ne 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.

***

O
nce 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.