In Sickness and in Health Read online

  For my wife and daughters:

  I love you. Maybe that’s all that needs to be said.

  Three years on, I was still the one washing his body every other day with a wet cloth, shaving his face, clipping his nails, cutting his hair. I fed him his food and helped him on the bedpan, and I wiped him clean, the way you do an infant, and I washed the soiled diapers I pinned on him. In that time, we had developed between us an unspoken language born of familiarity and routine, and, inevitably, a degree of previously unthinkable informality had seeped into our relationship.

  —KHALED HOSSEINI, And the Mountains Echoed

  For most of us, there’s nothing wrong that couldn’t be fixed with civil rights and some really gnarly sex!

  —PAUL K. LONGMORE, in conversation

  CONTENTS

  Introduction

  PART I

  FIRST COMES LOVE (AND SEX)

  M.L. and Ben

  Hannah and Shane

  Wanda and Kevin

  Rachelle and Chris

  PART II

  THE LONG AND WINDING ROAD

  Alisha and Jared

  Alice and Bill

  Felicia and Juan

  Laurie and Tim

  PART III

  AGING WITH A DISABILITY, OR WITH A DISABLED PARTNER, AND OTHER JOYS

  Alison and John

  Dorene and Steve

  Gloria and Sebastian

  PART IV

  TWENTY/TWENTY HINDSIGHT (THE LONG VIEW)

  Laurie and J.R.

  Christina and Janet

  Simi and David

  Colleen and Max

  Conclusion

  Acknowledgments

  Index

  INTRODUCTION

  BACK IN 2012, I had the good fortune of publishing a book. That book. You know, the one able-bodied people are always telling crips to do because they’re sure it would be “so inspirational!”—in short, a memoir about growing up with a severe disability and somehow prospering.

  Indeed, being unable to walk or even scratch my nose hadn’t prevented me from going to Harvard. I was one of the first quadriplegics to matriculate, if not the first (bragging rights not yet fully established). It hadn’t prevented me from marrying (and staying married for twenty-six years now, and counting), having two delightful children, and forging a career as a freelance journalist. But of course, you already know all that, if you’ve read my first book.

  Miracle Boy Grows Up introduced people to spinal muscular atrophy, the neuromuscular incapacity with which I was born. I have no muscles but full sensation (more about that later). I learned to live with it just as the world was learning to live with people with disabilities as a political force, a civil rights movement. But what to do for a follow-up? I’m not Mary Karr! My life only has one book in it.

  Some readers were insistent. A number of them suggested I delve deeper into my marriage, expose the secret spats and salacious highlights. But I didn’t want to turn myself and my wife, Mary Lois (who does not have a disability of her own, poor thing), into gossip fodder, thank you very much.

  Yet the nugget of an idea began to form.

  Surely, we can’t be the only “interabled” couple, for lack of a better term. Quick research showed that, although the statistics are unreliable, there are many marriages between people with and people without disabilities. And as the population ages and medical and technological advances enable people to survive illnesses and injuries in greater numbers than ever before, more and more folks are finding themselves in more or less our situation.

  To the media and general public, though, this kind of amatory partnering is often treated as an odd phenomenon. Not long ago, the cover of People magazine flaunted the marriage of Gabby Giffords—the brain-injured former congresswoman—and her husband, astronaut Mark Kelly, as a “special but unconventional love affair.” Is that supposed to be flattering? This treacly hooey could give you diabetes!

  I also keep hearing and reading about the aging population, this wave of debility and decay that’s creating a “caregiving crisis” (New York Times, February 26, 2014, among others). To me, this trend dovetails with the worrisome news of veterans who are returning from Iraq and Afghanistan with disabling injuries—the wounded warriors with young spouses who don’t know how to cope with their disabilities.

  I know strangers frequently regard M.L. and me as either tragic or noble. (We’re neither.) At the root of all this wonder and puzzlement, I think, is simple curiosity: How do they get by? Will they be all right? To put it another way, what people really ponder is: What kinds of pressures does disability put on a marriage? (The former activist in me protests: These quandaries are predicated on outmoded, unflattering presumptions that people with disabilities are nothing but burdens and liabilities! Certainly we bring more to our marriages than our bodily limitations!)

  In an age when interracial and interfaith marriages are common, it seems odd that romances like ours still leave people perplexed and awestruck. Many times I’ve heard M.L. calmly explain to the inquisitive, “I simply fell in love with a guy who happened to be in a wheelchair. Nothing noble or self-sacrificing about it.” (In funny moments, she’s added, “It’s not like he was a Republican or something!”)

  While this is certainly true, it’d be foolish to deny the challenges inherent in interabled conjugality. Financial challenges, emotional challenges, and—yes—physical challenges. No doubt it was a tad bold and naïve of us to trust that love would overcome all differences—if, indeed, differences need overcoming. Now that we’re past fifty, M.L. and I can concede that some reflection about how exactly we’ve managed might prove fruitful. I myself sometimes wonder: Why did she want to tie up her life with mine? And what gave me—a man who depends on round-the-clock personal-care assistance—the chutzpah to imagine, even expect, he could marry and live a normal life like anyone else?

  On the other hand, M.L. and I enjoy an undeniable degree of closeness, a give-and-take that other couples might envy. We finish each other’s sentences, not always correctly but usually close enough. More than that, we can anticipate each other’s moods or reactions to stimuli. She can get me comfortable in my chair when I can’t even figure out how to ask or what to ask her for. As for me, well, I can never understand why, in movies, men don’t know their wives are pregnant until the wives divulge it like a big secret. Weren’t they keeping track of their wives’ menstrual cycles? Don’t all guys do that, or am I the anomaly? (Probably something in between “all guys” and “only me,” but still.)

  Is our brand of symbiotic intimacy unique to our in-sync personalities, or could it be a function of our complementary differences, of interabled couplehood in general? Is this, in short, a benefit? (And if so, somebody had better tell those couples who are newly facing disability, before panic and anxiety destroy them!) Did we arrive at it naturally or is it something we’ve developed and honed over time? And perhaps most crucial of all, can it last?

  To shed light on these and other related mysteries, to gain a stronger self-knowledge and advocate for others who may be facing similar questions and judgments, I embark on a quest to zero in on the glue that binds M.L. and me, to study what sticks interabled couples together and perhaps simultaneously give hope to those who are struggling with the mating game. I’ll endeavor to accomplish all this through frank conversations with a variety of twosomes at different stages of their romantic lives and from different backgrounds. By coaxing them to share their journeys, I hope to unearth a rich vein of compelling and instructive group-wisdom. My mission, I realize, may reveal something I don’t want to see. Like picking at a scab, I might expose lingering insecurities that remain raw and unresolvable. Yet I hope to come out on the other end wi
th not only a better understanding of my own marital bond but also insights into why certain interabled marriages fail while others survive despite—or perhaps because of?—incredible strains.

  I’ll start with my own marriage to M.L. Then I’ll identify other subjects who have something worthwhile to offer and represent a particular perspective. (To be sure, there are plenty of couples in which both members have disabilities, but they’re beyond my scope.) Call my survey unscientific and subjective as all get-out, if you like, but I’m certain these discussions will illuminate a broad spectrum of deep-seated truths—and resolve any haunting, personal doubts about whether M.L. and I are a typical interabled union or something unique.

  PART I

  FIRST COMES LOVE (AND SEX)

  M.L. AND BEN

  IT ISN’T THE DA VINCI CODE, but my wedding portrait holds a secret meaning.

  For the past quarter century, the unassuming photo has stood on the bookcase in our living room in Los Angeles, in plain view of our sofa. The sofa has changed; the picture has not. It fell to the floor in the earthquake of 1994, shattering its protective glass. We put it back up, glassless.

  Yes, displaying a soft-focus eight-by-ten of our beaming younger selves decked out in our finery, glowing in the golden sunlight of a West Hollywood hotel’s urban garden, may seem un-special—perhaps even the epitome of bourgeois. But for me it conveys a subtle yet important message, hidden in plain sight: there’s Mary Lois, radiant in a lacy white cloud, standing beside tuxedoed me . . . in my motorized wheelchair. I’m not propped on a sofa or lounger; my wheelchair is deliberately not cropped out of the photo. It’s part of the picture, as it’s always been for us.

  The point is: we are—and have always been—an interabled couple.

  I was born with spinal muscular atrophy, a congenital, progressive, incurable neuromuscular condition. I never walked or stood, and I no longer have the strength to hold or lift a pencil. (I’m writing this with a voice-recognition computer program, and I drive my motorized wheelchair with a hypersensitive lip-controlled mini joystick.) Roughly half the babies born like me don’t make it to age two; their hearts and lungs become too weak to go on.

  I am now, as I write this, fifty-four years old—“in the first generation to survive to such decrepitude,” as my late friend, the writer Harriet McBryde Johnson, who also had SMA, put it in her fine memoir, Too Late to Die Young: Nearly True Tales from a Life. (She, alas, didn’t make it past fifty.) To look at me today is to see a concentration-camp-thin frame in a Raggedy Ann body, plopped into a state-of-the-art motorized wheelchair. You get used to how I look, or so I’m told. Some people have even said they forget I’m “crippled.” That’s supposed to be a compliment, I guess. Yet others never see past my obvious deformities. Around me they act what I’ll politely term “unnatural.”

  My wife, M.L., who neither ignores my disability nor acts weird about it, happens to be a couple of years older (not that it’s any of your business) and remains what some now call “neuro-typical”—i.e., nondisabled. We’ve been happily cohabitating for thirty-three years, the past twenty-six of which as legally married. We have two daughters, one in her early twenties and the other still a teenager, both able-bodied.

  That’s a long time to be an interabled couple. Does Guinness keep records like that?

  What we do know is that SMA is a broad diagnosis broken up into four types, depending primarily on the age of onset. When I was born, in 1962, it was impossible to diagnose. Nonetheless, my disability became evident when I was about six months old, which is on the early side of SMA type 2. (Type 1 manifests earlier, even at birth; type 3 starts at about eighteen months; and type 4 is “adult onset.” Other variations that don’t fit these patterns have been discovered too, but I don’t really understand them.) At six months, I wasn’t sitting up on my own the way my older nondisabled brother had. When I was put into a seated position, I tended to fall over. Doctors told my parents I’d never be able to cry very loudly because I lacked the necessary breathing capacity. That, Mom concluded, was the first clue that the doctors didn’t know what they were talking about.

  To be technical, SMA is a group of genetic disorders with varying degrees of severity. The US National Institutes of Health explains SMA as “a loss of specialized nerve cells, called motor neurons, in the spinal cord and the part of the brain that is connected to the spinal cord (the brainstem). The loss of motor neurons leads to weakness and wasting (atrophy) of muscles used for activities such as crawling, walking, sitting up, and controlling head movement.” The latest statistics indicate that one in every six thousand babies is born with some version of SMA. It might not be noticeable at first, as in my case. Symptoms can strike anyone of any race or either gender at any age. Or you might be a carrier and not know it. One in every forty people has the gene, or some 7.5 million Americans. If two of these gene-carriers sprout a child, the kid will also be a carrier and will have a one-in-four chance of developing SMA, which is why my siblings don’t have it, though it tends to run in families.

  But if one of those parents isn’t just a carrier but has SMA, like me, the odds of their kids having it too grow to 50 percent. So if M.L. were a carrier, our kids would have a fifty-fifty chance of having my disability.

  Everyone who has SMA is different. In my case the progression of the atrophy plateaued when I was about six. That is, the rate at which I continued getting weaker slowed. But, as I learned with great shock and a deep-seated sense of betrayal in my late twenties, the progression never stops completely.

  Early on in M.L.’s and my relationship, my disability seemed the least of our differences. I’m a New York–raised Jew; she’s a California Protestant. I talked fast; her speech was more considered, full of thoughtful pauses. I tended to be outspoken in my opinions and desires; M.L. would sooner do things than talk about them. She always wanted to have a house with a backyard, but I was a nature-averse city boy. Even our taste in home decor seemed to betray a profound clash: she favored ornate Waterford crystal, because it was from Ireland, as were her ancestors, while I, for no discernible reason, preferred the elegant, clean lines of Steuben.

  Our many differences, I think now, were part of the attraction. To me, her particular mix of West Coast free-spiritedness and DAR roots was exotic; to her, my determination must have seemed like a force of nature. (Mom always said my “handicap” shouldn’t stop me from pursuing any goal, a principle I took to heart.) Also, M.L. told me later, seeing the no-nonsense way my family assisted me at home helped demystify my limitations and needs. “You weren’t aggressive,” M.L. recalls now, her brown eyes widening like chocolate ponds behind her antireflective glasses, “but you had a hunger that was sexy. And yet I knew I was safe with you. It was only going to go as far and as fast as I wanted, which was something I needed at the time.”

  If anything, the novelty of our relationship felt like an asset, not a liability. We figured, in our innocence, why shouldn’t we throw in our lots together? As products of the 1960s and ’70s, we didn’t believe in boundaries. We were all about compromise and acceptance.

  Consequently, our glassware and silverware and china patterns and furniture all display eclectic tastes. I learned I was interrupting if I reflexively filled the silences in her natural speech pattern. She learned not to react to every complaint or judgment I uttered, realizing these were little more than a kind of verbal exercise. We live in an apartment with no backyard, but it has a swimming pool and a large terrace in a location that’s a compromise between our city and country tastes—Brentwood, one of LA’s semisuburban peripheral enclaves.

  My disability just seemed a matter of logistics and mechanics. To others, though, it’s had a different resonance.

  “You’re a saint!” M.L. has been told countless times. “I know it must be hard, but good for you for staying with him.”

  Other strangers have assumed she was my sister or nurse. No! we’ve wanted to scream. My disability is and always has been a part of our romanc
e. It didn’t come as a tragic surprise, and we’re not together despite it. It’s simply a part of who I’ve always been, as much as my race or eye color—and as such, it’s part of who we’ve always been as a couple. It’s a strand in the very fabric of our lives together.

  All this, we hope, is made plain by the prominently displayed wedding portrait. The picture also comes in handy if M.L. isn’t home and some clueless visiting deliveryman or repairman or housecleaner addresses my attendant instead of me, discounting my presence in, well, an unnatural way. I’ll try to draw attention to the photo as shorthand for, “Hey, I live here, and I have a life beyond these wheels!”

  Rewinding the mental movie of our lives together, I see M.L. and myself on our first dates—talking endlessly during long warm-evening strolls, trying to keep pace with each other though we moved by different means. There was the free Elvis Costello concert in New York. I made M.L. walk thirty blocks through the sweltering stench of Hell’s Kitchen in her date shoes and slinky pink dress, because in those days New York buses and taxis weren’t yet wheelchair accessible and that was the only way I could get across town. Many catcalls issued forth from the redolent denizens of those mean streets, naturally. Yet, I recall one young guy who smiled stupidly and said, “You two are beautiful.”

  That was nice, but would he have said the same thing if our handholding weren’t across a wheelchair armrest?

  Toward the end of the evening, emboldened by a couple of Black Russians, I suggested M.L. ride on my lap. She resisted, but like many disabled people I had learned not to take no for an answer.

  “Really,” I said. “Climb on. It won’t hurt.” Whether I meant it won’t hurt ME or it won’t hurt YOU, I can no longer recall.