by Ben Mattlin
“Screw the insurance. How much can a plastic collar cost?” I say.
“More than you’d think.” He looks it up on the computer and announces it’s something like $175. I’m in shock, but more than that I’m in a hurry. I say I’ll pay for it out of pocket. I’ll even pay extra to have it FedEx’d.
Three days later when I return, Hamid gets down to work detaching the mini-joystick from my armrest and installing it on the plastic collar. I wish the collar were more elegant—leather lined, or something—but it’ll do. Hamid’s garage is open to the outside air, and the weather has turned. Hot, dry Santa Ana winds have replaced the humidity, making everyone’s nerves as brittle as yellow leaves.
In less than an hour Hamid’s done. He straps it around my neck, saying, “You might want to put some moleskin around the edges. Some people find ’em too sharp.”
Why am I not surprised? There’s always something stupid about every wheelchair design. “How’m I supposed to drive this?” I ask when he has it attached. The joystick hangs about two inches below my lips.
He pulls the collar tighter, which doesn’t help. Stanley looks on. He’s working late today, since he usually leaves as soon as I’m in my chair. Till now he’s been standing off to the side staring at the windy crystal-blue sky. Innocuous, but not exactly helpful.
“It’s supposed to be up here,” says Hamid, fiddling with the collar’s front bib. “Most people press their tongue against the inside of their lips to push the joystick.”
The thing still hangs too low, but I figure I’m smarter than it is. “Foam,” I say.
At the back corner of the garage, thick gray Styrofoam is piled up on shelves. I’ve been staring at it, wondering why it’s there. I ask Hamid to fetch a small piece and place it under the bib, between my chest and the collar. He gets the idea.
A moment later, I’m extending my lips a la Mick Jagger and tentatively connect with the mini-joystick’s jagged cork tip. It works! My chair clicks into action.
“There you go!” says Hamid.
Stanley lopes over toward me. “Y’okay?”
The foam slips out from under the collar and I’m again immobilized. But now I have something to base hope on.
Once back home, I wait for ML. I don’t have much faith in Stanley’s fine-tuning abilities, plus he’s overdue to go home. Besides, ML is and has always been my best mechanic. I explain my vision to her. She cuts variously shaped wedges of the thick foam Hamid’s given me and sticks them to the back of the collar with mounting tape. We spend a good amount of time trying different configurations. The physical work isn’t strenuous, just monotonous.
Once we’ve raised the mini-joystick just enough, and managed to keep it balanced and reasonably secure, I give it a test drive. Our hallway walls bear the telltale marks of a crashing wheelchair.
After a couple of days, I’m getting the hang of it. Only problem is outdoors. On uneven terrain, my head easily rolls from side to side, causing me to lose contact with the cork or press against it too hard and lose control of the wheelchair. What I need is a way to stabilize my head that’s not too permanent, since I don’t want my head frozen in one place all the time.
I have an idea. I order sheepskin grips from a medical supply catalog I sometimes use. They’re actually made for crutches, but when they arrive I ask ML to attach them to my headrest, one on either side. (Another Velcro marvel!) The idea is to provide just enough resistance to keep my head in the right place. The solution isn’t perfect. I learn to be careful on bumps and inclines, which can still upset my head and cause me to crash the chair. But under most circumstances I feel as nimble as Fred Astaire. I can go left, right, forward, and backward—and any infinitesimal degree in between—with ease. Thus ends several years of halting, circumscribed mobility. Indeed, I become more maneuverable than ever, and so mobile I soon have to get my own cell phone.
***
It’s around this time that I find Jerry, the UCLA student from Ghana who asks nonjudgmental questions about my life and gets me thinking about it from a different perspective—how I’ve coped and why I remain optimistic. If in my NPR commentaries I did successfully synthesize my educated professional self and my wizened-yet-vulnerable disabled self into one whole person, can I do it again? And can I do it better?
Those were short, four-hundred-word pieces. What about something longer? Can I reflect on my past in that same light, with similar honesty? Without worrying about whether my words are politically correct or push disability-rights dogma? Without worrying about whether it’ll undermine my Ivy League yuppie identity or my disability-activist cred? Can I prove I really am able to be both at once—yuppie and cripple— at length, without caring about who finds out my secrets and what they think of me afterward?
The truth might not come off as cool as I’d like, just as my radio voice isn’t as macho as I’d hoped. But is that going to stop me? Do I care anymore about seeming cool?
The first time I’d tried to write a book about my life, I had to hide it in fiction—embarrassing fiction, in which I’d brazenly attempted to be the disabled JD Salinger or something. The second time, a kind of thinly veiled therapy to cope with our burgeoning fertility struggle, was so far from the truth as to be completely divorced from my disability. And my third go at writing a novel, also bereft of disability, was a cynical, impersonal, and half-baked exploitation of my Wall Street knowledge. These were efforts to establish some other identity. This time I’m set on being authentic and heartfelt.
I try to sort all this out and explain my conversion—my coming to terms with writing honestly about my life—in a creative essay that’s published in Newsweek’s “My Turn” column under the headline, “It’s just a wheelchair, not a Batmobile.”
Other columns follow—in the Chicago Tribune, USA Today, and elsewhere.
And then, at last, I give myself permission to spend two hours a day writing not just short pieces but—pretentious as it sounds—a memoir. On the second day, I’m hooked. It comes easily, quickly. Two hours a day isn’t enough. All this has been bottled up inside me for so long, most of my life.
I stay with it, interrupted only by the occasional magazine assignment. Or so I think.
***
Though Jerry’s with me only two hours a day, the sense of security he affords me emboldens me to go a step further. Or maybe it’s the voice inside me, telling me I need more autonomy—or more accurately, that ML and I must once again do the hard work of becoming less interdependent. Two hours a day of paid assistance isn’t enough.
On their next visit, I ask Dad and Barbara for a temporary hike in financial support. I’d like to offer Jerry more hours—he’s nearing graduation, so it’s a definite possibility—to give ML the freedom to figure out what she wants to do with her life separate from looking after me. If she returns to teaching, she’ll have to update her credentials first. That’s a process. And teaching would be a major commitment, she points out; she’d like to remain available to the girls and to me.
I want to say she doesn’t need to worry about that, but I have to admit she’s being realistic.
“Sure,” says Dad. “How much is enough? Take all the time you both need.”
“Really?” I’d misjudged him. Did I remember to say thank you?
I hire Jerry full-time. ML works on her résumé and makes inquiries. She decides to look for something part-time and close to home. There’s a large independent bookstore down the street (gone now, like so many others), and one afternoon she walks in with her résumé. It’s not hiring, but next door is a luxury gift boutique where a friend once worked. By the end of the week she’s hired there, about ten hours a week, which suits her fine. It’s her first paying job in ten years. She knows nothing about retail but finds she likes it. What’s not to like? She’s working with a small group of kind, smart women in a clean, aromatic setting among beautiful home decor, objets d’art, and stationery. Soon her hours are increased and she gets a small raise.
&nbs
p; ***
Just as her job and my memoir are beginning to take shape, I have a terrible run of diarrhea (so to speak). Day after day it goes on. I take Imodium round-the-clock to try to avoid accidents. I’ve been eating yogurt and bananas, taking the probiotic powder my gastroenterologist recommended, and a pharmacopoeia of colitis drugs—all apparently to no avail. “It’s a flare-up,” says the doctor. He puts me on a high dose of prednisone.
With the prednisone, I immediately feel better. The abdominal cramping eases and my mood improves tremendously. This, I know, is a common side effect of prednisone. It causes a kind of euphoria. But the diarrhea doesn’t stop. Weeks pass. I don’t know how much weight I lose, but I can see my jawline for the first time in decades. This is not a good kind of skinny. Looking back at the pictures from the time, I appear older, my skin paler, my hair thinner than now—even several years later.
Since my original diagnosis of ulcerative colitis, I’ve had a few of these flare-ups. Usually a few weeks of prednisone takes care of them. ML says prednisone makes me snappish; I say it makes me impatient. It also makes me hungry, which is good because I’m losing so much weight. Except my body isn’t processing the food properly. It just goes through me. My regular doctor— the internist I switched to after switching out of the HMO—says I’ve become anemic, among other ailments. Of course, that could be because of losing so much rectal blood (mixed with the diarrhea).
If you think chronic diarrhea is bad, try having it in a wheelchair. I’m not able to rush to the toilet. To sit on the john, I have to be lifted into bed, stripped, and then lifted onto the rolling commode. So suffice it to say this is a messy, disgusting period of my life. I’ll spare you further details.
In December 2007, shortly after I turn forty-five, Dad and Barbara are visiting for a long pre-holidays weekend. Friday, they take the girls out to dinner and give us money to go out somewhere ourselves. ML and I haven’t gone on a date in ages, but we’re both too tired to go anywhere and decide instead on delivery from a favorite neighborhood restaurant. I have the filet mignon—I remember it clearly because it’s the last meal I’ll eat for the next seven months.
That night, I spend painful hours on the toilet. Early the next morning I call my gastroenterologist, though it’s Saturday. He’s on-call. He wants me to check into Cedars-Sinai immediately. Dad agrees to take me so ML doesn’t have to. Kissing Paula and Miranda (ages eleven and eight, respectively) goodbye, I say I’ll be home by Wednesday. That’s what the gastroenterologist told me. I may have betrayed their trust forever.
At the emergency room, which is where the gastroenterologist told me to go, Dad and I talk about books I haven’t read and movies I haven’t seen. Neither of us can believe we’re in the ER because I seem so hale and hearty. And indeed, I feel fine. The daytime excretions have stopped. It’s just every night the diarrhea returns.
Dad likes the idea of my writing a memoir. He can hear the excitement in my voice when I talk about it. He tells me he’s learned an “astounding figure”— more than two-hundred-and-fifty-thousand books are published in this country annually. Surely, he says, there’s room for mine. And I flash back thirty years, when he was perhaps more frustrated with life, with his own career. He took me to the big Barnes & Noble store in the Village for the first time. “Look how many books there are!” he’d growled. “Who in hell needs another one?” Trust Dad to buck the trend and become more optimistic in old age!
In time I’m shown to a hospital bed. I still feel pretty good. But a day later, after the exploratory surgery that will lead to the removal of my colon, my doctor will explain that the prednisone masked symptoms—fever, for instance—of an advanced C-diff infection. That’s Clostridium difficile, to those in the know—a severe bacterial infection of the colon. There’s no telling how long I’d had it—and the longer you wait to treat it, the worse it gets. Mine had gotten very bad. (Diarrhea meds like Imodium might’ve made it worse, too.)
The only antibiotic certain to treat it now is Flagyl, a type of metronidazole to which I’m allergic. I know I’m allergic because my first gastroenterologist prescribed it, along with the original diagnosis of ulcerative colitis. My tongue swelled like a balloon.
For me, the worst part of the surgery is the intubation. Intubation makes me unable to speak. Since I can’t signal with gestures, it renders me utterly powerless. Warned this is going to happen, I have the surgeon phone ML immediately. It’s the middle of the night. Nevertheless, she understands my concern and hops out of bed, leaving the girls home alone, and rushes across town to the hospital. She can’t dissuade the surgeon from intubating me, however. He insists it’s necessary for my survival.
I come out of surgery with a colostomy bag and no way to talk. ML, the only one who can read my lips, keeps vigil beside me in the ICU round the clock. Several days pass. She tells me she’s stashed the kids at her brother’s and taken a leave of absence from work. She brings my usual prescription meds and nebulizer machine, in case I get into breathing trouble. Which is likely if I spend too much time lying down, especially after surgical anesthesia, which tends to deposit phlegm in the lungs. She is quite plainly my lifeline.
After two or three days the tube is removed from my throat so I can talk, and I gradually emerge from the medically induced fog. Hospitals are rough on me. Even as I’m restored to solid food, I can’t eat well in bed. My atrophied muscles feel weaker than ever. And now that I have this literal sack of shit affixed to my belly, I can’t put on my usual abdominal brace, which supports my breathing—my diaphragm—when I sit upright.
In a medical catalog, ML finds a similar abdominal brace with a cutout for a colostomy bag. Meanwhile, she suggests cutting a hole in my old brace. But the doctor doesn’t give me permission to get out of bed. I was only supposed to be here a few days and it’s a week already. It’s practically Christmas and I’m thinking about my kids.
I tell the surgeon—during the two minutes he tarries at my bedside before seven AM—that I have two small children I’d like to be with over the holidays. Cedars is a Jewish hospital and maybe he doesn’t understand. He says I’ve developed a fever.
On the eighth or ninth day I finally talk him into letting me go, provided I fill a prescription for Zithromax, to handle whatever is causing the fever. It’s Christmas Eve. So desperate am I to leave that I urge ML to throw me in my chair and drive home as fast as possible, though I’m having trouble breathing. It’s only because of poor abdominal support (I hope). Whatever the cause, I know I’ll feel better in my own bed. She does what I ask. And sure enough, though I’m desperate for air by the time we get there, I do breathe better in my home bed. My whole body unwinds internally, and I feel victorious! Free of the hospital gulag! Home for Christmas!
Our sister-in-law brings the girls home and, before leaving, congratulates us on our “Christmas miracle.” For dinner, we buck holiday tradition and order mild Indian food to be delivered. I manage to eat a few bites of naan. Then I want to sleep.
In the middle of the night my gut starts aching. Gas, I figure, a common consequence of eating lying down. I wake ML and ask to roll onto my stomach. It’s my best position for sleeping, plus it should help with the gas.
“You can’t go on your stomach anymore,” she reminds me. “You have a colostomy there.”
“But . . . I have to. Come on, you can do it.”
How foolish I was. I should’ve listened to her. Five minutes after turning over, my stomach is hurting worse than ever. I need to roll back. For an interminable duration I try rolling this way and that way . . . It’s four AM when poor sleep-deprived ML (she’d spent the past few nights in a hospital chair) notices my colostomy bag is filling with blood.
In a panic, she drains the blood into a jug—and it refills again. She calls 911.
And so, within hours of my return home, an ambulance rushes me to the UCLA emergency room, which is closer than Cedars. I remember telling the ER doctor, “My wife will kill me,” since I’d made her ta
ke me home and roll me, against her better judgment. I remember ML’s showing up, having told the kids to get up and open their presents without us. I remember the persistent pain in my gut, and being wheeled in a bed to a small room with a TV I can’t see. I remember lots of people hovering around me, and I vaguely remember wanting to roll over again. ML says I asked for my mother, which I now know is typical of hospital patients facing imminent death.
The next thing I can conjure from memory, I’m accidentally onstage during a performance of Wicked. My mind is copying a surreal scene from a sitcom I’d watched weeks earlier. Everybody is gawking at this idiot who’s fallen onto the stage. I can’t get off stage. I can’t get out from under the bright lights. Then a curtain closes—or opens. Regular light seeps in. And Dad is there, gazing down at me. Behind him, ML. My stepmother Barbara and both my brothers—Alec and Jeff—too. It’s like the final scene in The Wizard of Oz—my whole family surrounding my bed. But in this case it’s a hospital bed.
They’re asking me if I recall passing out, if I know I’ve been in the hospital for several days. But again I can’t talk. Tubes in my throat are gagging me. I try to get a focus on my surroundings, but I don’t have my glasses. A maze of hallways with TV sets mounted high, that’s my impression. Alec asks if I want to watch Law & Order. I try to make a “no” face.
I also remember thinking about an article I’d recently written for one of the disability magazines about computerized communications equipment for people with multiple disabilities—screens that give you a choice of words to generate sentences which the computer will speak. This is what I need now, I figure. Communications equipment. I try desperately to relay this.
Dad and Alec recite the alphabet, waiting for me to blink to indicate a particular letter, to spell out what I want to say. I’m too woozy and can’t spell. My mind keeps wandering.
