Miracle Boy Grows Up

by Ben Mattlin

  This becomes a favorite spot for many years, until she’s big enough to ride on my lap.

  My chief skill as a parent is making up silly songs and games, and telling stories, while monitoring Paula as she bathes in the kitchen sink or, later, in the tub. Or waiting at the doctor’s office or on long car rides. After a while I notice something about my stories. They tend to be of a particular variety—The Bunny Who Could Not Hop or The Friendly Gorilla (Who Refused to Fight). They’re all about characters who have a deficit in the eyes of their peer group. And by the end of the story we learn not to reject or discount those who seem different. Later, I graduate to Scooby Doo and superhero stories. These usually have a moral, too. Something about gumption and persistence.

  No, I can’t change diapers. (Wasn’t really looking forward to that aspect of parenting anyway.) But I’ve learned how it’s done, in case I ever need or want to instruct my attendant or anyone else to do it. Plus I pride myself on being a partner in the decision-making and other details. Somebody has to pay the bills and update family members on how we’re doing! Those sorts of jobs fall to me. I’ve also devised an easy remote switch for a camera and video camcorder, to document every new tooth and other developments.

  I don’t kid myself. Obviously, ML has taken on a tremendous responsibility—baby and I both depend on her, and at times she bristles under the pressure. More about that later.

  The pressure eases somewhat when Paula’s older and I can find ways to play with her and give ML some much needed rest. We’ve had our sizable terrace enclosed with Plexiglas, to be baby safe, and put a small slide and climbing structure on it. It’s almost like a giant playpen, the enclosed area. I go out there with Paula, keep her company, keep an eye on her, play her games, and hours can pass while ML gets a break. In time she’ll go so far as to get a mani-pedi, but not yet. For now she has to remain within earshot in case something happens beyond my control.

  ***

  Another way in which ML is not like a single mother is financially. She doesn’t have to worry about making a living. She becomes financially dependent on me.

  That’s a curious perk of my disability. When Paula is three months old, ML’s supposed to go back to work. The prospect breaks her heart. “I can’t see spending all day with other people’s kids while someone else plays with mine,” she says.

  We hatch a plan. If we let go my personal-care assistants (the new tongue-twistery term for attendants, frequently shortened to PCAs), ML can quit work. We’ll end up the same economically. The money Dad sends for the hired help would go to her—or, really, stay with us—instead. She’d be taking on a lot of necessary work, and I’d be giving up a lot of independence, but it’d just be a temporary arrangement. Till Paula’s in preschool or kindergarten, let’s say.

  ***

  Historically—even well into the middle of the twentieth century—certain people with disabilities were forcibly sterilized. Usually those with mental retardation. People like me were probably not expected to have children anyway. The fact is, my disability is hereditary. No one else in my past had it, as far as we know, but spinal muscular atrophy is an autosomal recessive disorder; both my parents must have been unwitting carriers. Long before Paula was born, ML and I’d discussed what we’d do if our baby had a disability. Spinal muscular atrophy or any other.

  “It’d be great!” I’d said. “What better parents for a crip kid than us?”

  “Don’t you think you’re being a little selfish? You’d want to exploit our child for political purposes!”

  All I’d known was my mother always said the day she’d found out about my disability was the saddest in her life. And I hated that she felt that way. I tried to understand that she’d meant she was sad because she worried about how hard my life would be. But through talks with Barbara and other leaders of the disability movement, I’d come to despise the concept of disabled fetuses being aborted simply because of their disabilities.

  “If it’s a painful condition, that’s different,” I’d allow, trying to see things my wife’s way. “Then perhaps it’d be unfair to prolong its life, its suffering. But the thing is, you never know what might happen. You never know what a child is capable of.”

  During her pregnancy, ML had the amniocentesis to determine if Paula would be born with Down syndrome. Not that she’d necessarily want to abort; we’d agreed it was better to know in advance, to be prepared. There were no prenatal tests for spinal muscular atrophy.

  Yet within months of Paula’s birth, researchers in France identify SMA’s genetic markers. A test (though not a prenatal test) becomes readily available. We have no cause for concern (if that’s the right word; I’d’ve been proud regardless); Paula shows no indications of floppy baby syndrome—but ML and I go in for the test. We know I’m a carrier; if ML is, too, then our children have a fifty-fifty shot of having SMA.

  Michelle, the geneticist at UCLA, seems almost excited to try out this new genetic test. She’s eager to explain how it works, how she has to take a little blood from me to determine which specific strain of SMA-causing chromosome abnormality to look for, then some from ML to see if she has it. Michelle recommends testing my brothers and their wives as well.

  Though the results are predictable—ML isn’t a carrier, so our kids won’t have SMA (but will be carriers); both my brothers are carriers, but Alec’s wife is not, so no SMA for their kids either (as of this writing, Jeff isn’t married)—one consequence of this genetic testing causes chills.

  It’s Dad. Confronted with the irrefutable proof that he’s a carrier— which, of course, we’d always known—Dad is unaccountably surprised. “I always thought it was those diet pills your mother took that caused you to be handicapped,” he says.

  Dad is not a big one for science. Had he really held onto this cockamamie belief? Had he really blamed (or credited) Mom all along?

  “Mom took diet pills?” I ask. “She told me she didn’t take even an aspirin when she was pregnant. Natural childbirth, breast-feeding, all that stuff.”

  “It was different in those days. Doctors’ instructions were different from now, and you didn’t question. But yes, I remember the diet pills she took.”

  There’s remember and there’s remember. I ask him what the pills were called, but he has no recollection.

  I think this is funny enough to tell ML later. Her reaction: “No wonder they got divorced.” Whether she means because of Dad’s resentment, because of Dad’s poor memory, or because of his scientific stupidity, I’m not certain.

  ***

  After Paula’s born, Dad changes toward me. In phone conversations, he starts treating me with more acceptance and respect than before. He seems . . . less displeased. Perhaps it’s because he’s paying less attention to my employment status—or lack thereof—and more to baby news. Or he simply likes being a grandfather (though he already was one; Alec’s wife had the first grandchild).

  Whatever the reason, my becoming a father softens him.

  One day, Dad tells me he’s been given the name of a magazine editor who is looking for freelance writers. It’s a California-based Wall Street magazine called Buy Side. “Not for me,” he says. “I’m busy enough. But maybe for you.”

  This isn’t grasping at straws. It’s a real contact, a real name, phone number, and address. I think it’s the first time Dad’s actually led me to possible work, instead of just complaining I don’t have any. Now that I’m thirty-four!

  ML takes down the information for me (since I can’t jot it down myself, and don’t have a recording device handy), including the funny name Buy Side, whatever that means. Before I forget—without bothering to look for a copy of the magazine, which I wouldn’t have found anyway because it’s closed circulation—I send off a letter and résumé. That much I have down to a science; I’ve sent out hundreds, if not thousands, since college.

  After a few weeks, hearing no response, I follow up by phone. The editor— let’s call her Roberta—answers right away. She h
as a kind but harried voice, and she’s not sure she remembers my letter. She promises to get back to me.

  “If I don’t hear from you in . . . what, two weeks? . . . may I call you again?” I say, having been burned before.

  I don’t actually count the weeks. We have a new baby in the house. Time passes strangely. When I think a goodly amount has passed, I phone again. And this time she gives me an assignment!

  What she wants me to do is write a profile of the equity-research operations at an LA-based investment banking boutique. Confident I’ll figure out what that means later, I ask the sort of questions I’ve grown accustomed to asking: Are there previous articles that would serve as good models of the style she’s looking for? What would she like to see done the same or differently?

  Roberta sends me a few copies of past issues. Each one contains a couple of investment-bank research-department profiles. From these examples I can almost put together a template of what she wants. I’m a good imitator, a practiced chameleon who can adapt my writing style to fit the needs of my employers. Er, I mean my clients.

  With self-confidence akin to foolhardiness, I jump in and call the investment bank’s press office, which sends me a thick envelope of background material I don’t understand. When I tell Dad what’s come of his lead—and thank him again for it—he says, “Send me what they sent you. Maybe I can get you up to speed.”

  This is the new respect I’m referring to. A level of trust. Not sure I trust it yet, though. I know Dad. He’s going to try to take over. Typical of him not to see me as separate from him, to fail to distinguish between us.

  A few days later, Dad spends about an hour on the phone with me giving me a tutorial on investment banks. He helps me draft questions for my interview, outline what to look for, what to include. It calms me down, gives me confidence. I was wrong. He’s genuinely helpful. We’ve never had a conversation like this, one where he’s respecting my intelligence and competence by sharing his knowledge, his expertise. He’s at last paving a path, not burying me in the dust and mud of harsh judgments and impatience.

  It’s a small investment bank—hence the term “boutique.” I have one primary contact to interview there; any others will be optional. I’ll have to interview this main person face-to-face. That scares me shitless. So far neither he nor my editor know I’m disabled.

  I devise a plan of attack: I’ll ask him a few questions by phone first, to establish my competence and open the relationship (using my usual speakerphone and tape recorder). Then I’ll complete the interview in person, at which time—having already invested in the process—he’ll dare not balk at the sight of me.

  My target, Stephen, is pleasant to talk to. Some interviewees hate the press and think you’re out to screw them. Others are pleased at the publicity. Stephen is in the latter camp. I imagine a fat honcho—his ecru-shirted belly hanging over his navy-pinstripe-suit pants—with a big, fake smile and a bogus-warm handshake. I’m terrified of meeting in his office.

  In preparation, I don a suit (or should I say the suit, since I have only one) and tie. I bring a small tape recorder so I don’t have to take notes, which I couldn’t do anyway. I print a list of questions and clip it to a clipboard to keep it steady and readable on my lap. I try to memorize the questions just in case. Finally, I tell Jorge to stay in the reception area in case I need him. (It’s better to keep him—in his soccer shorts and rock ’n’ roll T-shirt—separate.)

  It’s a lovely, modern office in Century City. Polished light-wood walls and chrome fixtures. To be professional, I must be absolutely clear about my needs, whatever tools and modifications I require, I remind myself. Disability rights isn’t about making people feel sorry for you or take care of you; if we don’t want others speaking for us, we must take responsibility for knowing what “reasonable accommodations” we require. Or to put it another way, Mom was right: you have to speak up and ask for what you need. No one’s going to read your mind.

  Stephen steps out to greet me. He’s a tall, lean man in his fifties, with thinning wisps of once-blond hair, khaki chinos and a blue shirt, sleeves rolled-up, with a loosened striped tie. Not at all what I’d imagined. If anything, I’m overdressed.

  He offers his hand for shaking. I say, “Uh, I can’t really reach out, but I’m glad to meet you.” Or I intend to, but he’s already withdrawn his hand. The awkward moment passes.

  He leads me down the hall to a spacious office with big windows overlooking a commanding view of West LA. The office is messy, boxes stacked everywhere as if he’s only recently moved in. He kindly pushes a chair out of my way so I can face him at his desk.

  We exchange a few more pleasantries. He sees the tape recorder in my lap and asks if he should take it. I say okay, thanks. He places the tape recorder on his desk and pushes the record button. I’m relieved I don’t have to call Jorge yet.

  And then, when Stephen starts talking, something else emerges. When he gets going and gestures, his arms quiver and his hands shake. At one point the phone rings and he’s positively spastic about answering it. Early-stage Parkinson’s, I’m guessing.

  I pretend not to notice, and he does the same of my disability. Yet as I watch him I feel a bond develop between us. Is he watching me, too?

  A fellow crip!

  ***

  For my first draft, I follow the basic structure of a similar profile that appeared in the magazine’s last issue. I complete the draft a few days early so I can fax it to Dad for review. He’s a kind editor, it turns out. He preserves my tone while suggesting a few small changes and asking one or two factual questions. Again, I delight in his soft but thorough touch, his not taking over. In the end, I take some of his advice and reject the rest.

  Roberta is pleased with my submission and gives me another, similar assignment. This time the investment bank is in the Midwest. No budget for travel (thank God, since airplanes are difficult for me). “Just do phone interviews,” she says.

  No complaints, here. I don’t tell her why, though I should’ve learned from seeing Stephen that disability is everywhere these days.

  By my third Buy Side assignment, I’m still unsure if I’ve got the hang of it. My tendency is to repeat what worked before. So I send a draft to Dad.

  “You don’t need my help anymore” is his reply, startling me. “You know what you’re doing by now, and there’s nothing more I can teach you.”

  Such a revelatory compliment! Is he sure? Can I do this on my own? Yes, I think I can. I just didn’t think it would be so easy to move Dad out of the way. Or, I realize, for me to actually let him move out of the way.

  Pushing he doesn’t need. He’s bowing out. He’s passing the baton. He’s letting me “stand” on my own. In old photographs, he always seems to have a hand on me, holding me up, steadying my balance. So this is the start of a new relationship between us. Something like that moment at Stanford when I was seventeen and we ate fresh fruit from the concession stand and smiled in unison at the luminous passing coed. This is better, though. Not only does he respect my abilities, but I have a new respect for his—his skill at mentoring without taking over, a quality I didn’t recognize in him before. Plus now we share an affinity for financial writing—something he doesn’t have with Alec, though I always felt Alec and Dad had more in common with each other than either one had with me.

  ***

  I never do another face-to-face interview. Not ever. Phone and, later, e-mail are sufficient. In the modern, rush-rush world, no one seems to think this odd. Most of the busy Wall Streeters I deal with are grateful to spurt sound bites by cell phone while waiting for a plane, riding on a train, or driving (soon, though, everything will have to be vetted through corporate legal departments). The days of the off-the-cuff or overheard comment at the corner bar are over, thankfully for me.

  Over the next few years I become exceedingly busy churning out one or two stories a month for a succession of editors. (The magazine’s name, Buy Side, refers to professional buyers of stocks, b
onds, and other securities—portfolio and mutual-fund managers, primarily—as opposed to those who sell them, or sell information about them.) I gain a reputation as a fast, accurate, deadline-observing writer. All from a corner of my living room.

  In that increasingly well-equipped corner, I work out a way for my computer to record my speakerphone interviews, which makes playback and transcription easier. No buttons to push, just icons to click. That plus the voice-recognition software contributes to my alacrity in turning around stories, which I submit by fax or e-mail. And as I gain confidence in my skills, I feel current, high-tech, telecommute-y—rather than “handicapped” by the arrangement. In fact, I’m pretty sure my disability is never detected. The magazine’s offices are in woodsy northern California, some four-hundred miles away from arid, smog-choked Los Angeles, so I never meet my editors in person.

  Are the famous words of Alexandre Dumas—“rien ne réussit comme le succès,” or “nothing succeeds like success”—true? Now that I’m an “experienced” financial journalist, Dad tries to find me more leads on work! He almost has an arrangement sewn up with one editor, but then for some reason—perhaps because travel was involved?—he mentions I’m in a wheelchair. She becomes more than upset, Dad tells me later; she’s angry. “You should’ve informed me at the outset!” she snaps.

  Nonplussed, Dad assumes she’s concerned about the public face of her fledgling publication, about having someone like me represent it. I assume she’s concerned about a potential lawsuit, in this post-ADA era. In any case, I’m dumped before I’ve started, without explanation. And Dad, incredulous, comes to experience firsthand the sort of hurdles I’ve been facing.

  In time, another editor he knows is interested in my Buy Side experience and soon assigns me to write short profiles of winning stock analysts. I presume Dad’s careful not to mention my defining physical feature this time.

  And so I become a busy contributor to both Buy Side and Institutional Investor. They’re similar magazines, with an overlapping audience, but II is older and more prestigious. Using its name when I call or e-mail for an interview always yields a quick response.