Taken from in Sickness and in Health: A story of love, disability, and a quest to understand the perils and pleasures of interabled romance.
By Ben Mattlin
I’ve always felt fortunate. That may surprise some people. It surprised M.L. when I first mentioned it to her.
But I’m fortunate, I insist, to have been born when I was and where I was, with a sense of privilege in a time of relative peace and prosperity. And fortunate in the financial sense too.
Yes, I was born with an incurable “muscle-wasting disease,” as the Muscular Dystrophy Association used to put it. Plus, my parents split up when I was nine, my mother died when I was just eighteen…and so forth. But all of those potential setbacks would’ve been much more devastating had I not been born into an educated family that possessed intelligence, a sense of honesty and decency, and, let’s face it, monetary resources.
The difference between having and not having is particularly crucial for people with disabilities. It can be the difference between being able to get out of bed in the morning or being completely stuck there. Between comfort and pain. Sometimes between being able to breathe and, well, being dead. To a crip, adequate resources and support systems can mean everything.
When I went off to Harvard, which was a fortunate opportunity in itself, I did so with great self-assurance, or so I convinced myself that I could live independently in a freshman dorm and, later, in one of the storied “Houses” (Harvard’s residential quarters for second-, third-, and fourth-year students) with a live-in attendant. That’s a self-confidence that perhaps only money and encouragement can buy. Several lying, stealing, disappearing, alcohol- and drug-abusing attendants later, I felt shaken and unsure. But I knew the idea was good, the concept that I should be able to live on my own, under my own direction, if only my myriad custodial needs were met. And the only way I could meet those needs was if Dad kept sending checks. (Now that I’m old enough to acknowledge his largesse as a gift and not my due, my heartfelt gratitude scarcely registers as adequate.)
My abiding good fortune is what flashes through my mind when I first meet Laurie and Tim Young of Edmonton, Alberta, Canada, for reasons which will become apparent.
Laurie, forty-five, was born with SMA like yours truly. But she was born with one very important difference: she’s Canadian. Tim, fifty-three, is able-bodied. They’ve been married nineteen years.
Laurie and Tim aren’t rich, but they have all they need. That’s what they tell me. Our first conversation is by email. Laurie writes that her sister, who also has SMA, inadvertently introduced her and Tim. I ask Tim about that night. “What first attracted you to Laurie, and what then made you go the extra step of tying the knot?”
“It was her sense of humor,” he says. “To this day, all I have to do is see her smile and I feel happy.”
She smiles often. They both do. They tease each other and joke. It’s a warm kind of interplay.
Laurie is a youthful-looking woman with a round face framed by smooth black hair. Sitting in her motorized wheelchair which, I note, doesn’t include a head-support, indicating a degree of neck strength I myself haven’t had since childhood. She is at most five feet tall. Her arms bear colorful tattoos, thirteen tats in all, she tells me, representing big moments in her life, such as a portrait of Scooter, a dog they lost; a palm tree, to commemorate their many happy vacations to sunny climes; and a purple rose in memory of a friend with SMA who died. Her feet show the edema that’s common among those of us who sit all day, and she has scoliosis. Otherwise, she’s neither emaciated nor rag-doll floppy, the two camps many of us muscle-less SMAers tend to fall into. (My older brother used to compare me to the Pillsbury doughboy, before my big weight loss in puberty brought on my current scrawny demeanor.) Laurie, in contrast, appears distinctly healthy.
Tim puts his muscular arm around her sloping shoulders. He’s a vigorous, hardy-looking man who speaks slowly, carefully, and with great sincerity. Though he’s eight years older than Laurie, he doesn’t look it. It’s plain that he adores and dotes on her.
She was a working woman living independently with paid assistants. I ask if her disability was an issue of any kind in his feelings for her. “Not even a little bit,” he answers.
Growing up, Tim had a quadriplegic uncle from a car accident with whom he used to go on excursions. Over the years he’d helped the uncle with all aspects of his care. But he’d never dated anyone with a disability before Laurie.
Diagnosed at age two, Laurie had dated since she was fourteen and had her first serious boyfriend in high school. It was a regular high school, and the boyfriend was not disabled. “We were together for two years,” she says. On through college, she “dated a lot and honestly had a great time. I spent a lot of time at clubs and always got asked to dance. . . . I’m sure there were guys who didn’t want to date me because of my disability, but I didn’t have time to worry about them.”
She says her friends were comfortable lifting her into cars and folding the manual wheelchair she used in those days into the back. She never felt left out socially. Sexually, however, she says she was “pretty innocent” before age seventeen. (Seventeen?! I was innocent till nineteen, and many other crips I know were innocent well into their twenties!) “On par with my able-bodied friends,” she reflects.
Her sense of belonging may have come from her affluent upbringing (though she’s not affluent now), or it may have existed in spite of that. Her parents, she’s quick to tell me, didn’t approve of Tim. That’s partly because he was a divorcé. “They were worried about protecting their assets,” she says. (Which reminds me of the remark someone made in the early years of my relationship with M.L. that I must be rich, because there was no other conceivable reason why an able-bodied woman would be with someone like me.) “My parents didn’t speak to me for six months.”
Tim recounts a recent visit during which he actually had to kick her father out of the house. “He called Laurie fat and tried to get me to make her eat less.”
Fat-shaming seems particularly cruel when directed at someone who’s incapable of aerobic exercise, but I don’t say anything beyond, “Hmm . . .”
Tim’s family, on the other hand, has been more accommodating except for his eight brothers, whom Laurie calls “alcoholic and dysfunctional.” Tim has another explanation: “They’re intimidated by her intelligence,” he says. “They lack class and respect—that’s what I think.”
Whatever the source of family discord, both agree it has nothing to do with her disability.
How different Laurie and Tim’s life is from my own situation! From early on, my family-funded autonomy made my relationship with M.L. possible, and that fiscal support continues to under-gird our lives today. Without it, I might not have felt entitled to all the same rights as anyone else: the right to date, to have sex, to work, to play, to marry. And, for that matter, without such a normal sense of self-worth I might not have been a terribly appealing romantic prospect. Unfortunately, I amassed enormous debt, spread out over several credit cards. I wasn’t spending extravagantly. These debts were for legitimate expenses.
My financial woes were only resolved after my near-death hospitalization. What had happened was I went into septic shock from internal hemorrhaging after surgery. I’d been in a coma. I had a new colostomy pouch, resected and moved to the left side of my abdomen from the right. In all, the ordeal would last nine months and change my marriage forever.
For the first part of that ordeal, my family had gathered around. M.L. had called them away from vacation, said I was dying. It was true. She’s not prone to exaggeration.
They helped in numerous and important ways. They took the girls to movies and restaurants. My younger brother, Jeff, answered my emails, made my excuses to work associates and friends alike. And my stepmother, Barbara, took care of the piling-up bills. (Dad had been generous, but he’d only earned an editor’s salary, while Barbara had recently retired from a long and well-paid corporate career.) That’s when she noticed the thousands we owed the credit card companies.
It may have been a thin silver lining, but my illness made a clearer statement of our financial predicament than anything I’d managed to convey to my family up till then. Not just the enormity of our debt but the legitimacy of our expenses. Medical insurance, doctor bills, wheelchair supplies, and, most of all, the attendants. Our moderate income—from my writing and editing work and the part-time retail job M.L. had taken after the girls were born—might’ve been enough for a decent life without these extraordinary costs, but it wasn’t anywhere near enough for our real-world requirements.
Having seen our financial predicament in black and white, Barbara became our angel. She set up a trust, and any time we get in financial straits, I let her know, and the trust delivers.
Debt gets under your skin and in your blood. After Barbara eased our financial problems and my body mended, life at home became calmer, happier, than it’d been before I’d gotten so sick. M.L. and I gained a new respect for each other, I believe. Not only did I owe her my life, but I’d caught a whiff of what exactly I gave her too, something I’d always been insecure about. I saw how much her life is tied up with mine. Maybe I give her a kind of motor, a context or purpose, but each of us needs the other to help establish a sense of direction, of identity. Call it codependent, but perhaps this is what keeps us on track, this intertwining of our methods and objectives. And the effect of these insights was to reveal a new timbre of trust and faith between us, a deeper love that’s proved stronger and more passionate than youthful lust.
Ben Mattlin is the author of In Sickness and in Health, from which the above piece was excerpted. Mattlin’s work has appeared in Financial Advisor magazine, New York Times, Los Angeles Times, Washington Post, Chicago Tribune, USA Today, Vox and on NPR.