Modern Love By
When Mary Lois and I started our relationship on that humid night in Stamford, Conn., we may not have expected it to last. After all, I was unable to scratch my own nose, let alone walk. And she was three years older than me and far more independent.
I asked if I could kiss her. I had to ask because I couldn’t lean in on my own; my body doesn’t work that way.
So she leaned in and kissed me as I had never been kissed before.
“You were just a kid,” she told me recently.
I was 19. She wore her straight auburn hair in a short boy-cut then. More than 30 years later, she still does, though the color has faded. I wasn’t only attracted to her iconoclastic spirit, alluring eyes and figure; I was on a mission to lose my virginity.
I was born with spinal muscular atrophy, a congenital, progressive, incurable neuromuscular condition, but my lifelong disability has never prevented me from doing anything I set my mind to. I was one of the first quadriplegic students to matriculate at Harvard. And spinal muscular atrophy wasn’t going to keep me from having a girlfriend, getting married or having a family.
I now write with a voice-recognition computer program. I no longer have the strength to hold or use a pencil. I drive my motorized wheelchair with a hypersensitive, lip-controlled mini joystick. Nevertheless, that first girlfriend and I have been married for nearly three decades.
It’s a relationship that, in many ways, has only become more mysterious to me as the years have passed. Early on, I took for granted the fact that I would find love. I was cocky that way. But over time I have wondered why and how my marriage has worked out. So when I landed a contract several years ago to write about love between people with disabilities and people without, I figured I would start with my own marriage.
When I asked Mary Lois what she first saw in me — a wheelchair-using teenager whose condition was only going to worsen — she said, “You weren’t aggressive. But you had a hunger that was sexy.”
It felt strange to be interviewing her. She is, after all, my lifelong companion and the mother of our two daughters, both now in college.
“I knew I was safe with you,” she said. “It was only going to go as far and as fast as I wanted, which was something I needed at the time.”
I had learned to live with my disability just as the world was learning to live with people with disabilities as a political force, a civil-rights movement. That no doubt helped my cause, which was simply to live a full and normal life.
She’d had no experience dealing with someone like me. But she learned to live with my limitations — those caused by my atrophied muscles, my respiratory distresses and myriad external obstacles and attitudes — through real-world, on-the-job training.
Rewinding the mental movie of our lives together, I see us on our first date a few weeks after that kiss, talking during a long evening stroll. We struggled to keep pace with each other as we moved by different means.
There was an Elvis Costello concert in Manhattan. I made her walk 30 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 wheelchair accessible, and I didn’t yet have a van.
Along the way, strangers harassed us with rude remarks. We ignored them, but such comments would follow us for the rest of our lives. I believe a part of us grew stronger because of them. The novelty of our relationship became an asset, not a liability. We thought, in our innocence: Why shouldn’t we throw in our lots together?
Toward the end of that night, emboldened by a couple of Black Russians downed at a bar on the walk back, I suggested she ride on my lap. “Your feet hurt,” I said.
She resisted, but like many disabled people, I had learned not to take no for an answer. Although then, as before, everything relied on my powers of persuasion. And my charm. Or so I like to think.
“Really,” I said. “Climb on. It won’t hurt.” Whether I meant it wouldn’t hurt her or me, I no longer recall.
Was it the sheer force of my personality — my gentle boldness — that made her not only jump on my lap but also fall in love with me? It certainly wasn’t the ease with which I move through life.
But there was another reason. A few years earlier, she had come to Stamford for the summer to look after my infant half brother. She was still in college and was at loose ends. So by that first date, we had already spent a lot of time living in the same house.
“I think that’s how you flew under my radar,” she said. “Because we were able to become friends first without any pressure.”
This proximity also gave her time to get used to my disability, to see how my family handled it, to demystify it. Nevertheless, even if my disability made me seem harmless, she admitted she was nervous during our first sexual encounters in the weeks that followed that concert — afraid, primarily, about injuring me.
“You were so fragile looking,” she said. “And I was worried about balancing in the tiny bed. And if there was a problem, would I have to go get your attendant? Or worse, your dad?”
I shudder to think. None of that had ever occurred to me.
“But you survived the first few encounters,” she said. “And then came the miracle when I was able to lift you.”
I remember it well. Several months later, on a desperate whim, she tried lifting me out of my wheelchair and discovered she could. I weighed about 120 pounds — not nothing — yet somehow she managed it. Which meant from then on we could go almost anywhere and do anything without an attendant tagging along.
Over time, she wanted to do more for me: shaving me, for instance, or clipping and cleaning my fingernails. At first I resisted, but she did these things better than any paid person could. She had a vested interest in my grooming.
For better and worse, disability tends to break down the barriers of privacy. When someone must assist you with dressing, bathing and using the bathroom, you come to understand each other’s most intimate processes and needs. (I still have paid help every day, but she fills the gaps.)
“We faced challenges as they arrived, survived them, even grew from them,” she said. “But if I had foreseen them all at once, they would’ve been too terrifying.”
Terrifying? I want to ask her more about that. But I suppose I shouldn’t be surprised. You meet problems as they arise. Besides, the important question on my mind is: What happens when those challenges become too much?
“I think the same is true for many people,” she said. Meaning we all face challenges we didn’t anticipate. “Disability is part of it. But there are so many kinds of troubles families endure.”
Early on, before we had children, I got deeply involved in disability rights (and pride), a movement that can sometimes view able-bodied people as the enemy, as oppressors. For a while this led me to feel more bonded with a disabled woman and fellow advocate than with my wife.
Then, 10 years ago, I nearly died from complications of gastrointestinal surgery, a monthslong crisis that humbled us both.
I wanted to know: What would she do differently if she had it to do over again. What advice would she offer a young, able-bodied woman considering a relationship with a disabled young man?
“I think I was better off not knowing the challenges,” she said. “Perhaps just the knowledge that we’re still together and best friends all these years later. To know that in advance would sustain me in those times when it didn’t seem possible.”
True. Most couples face seemingly indomitable trials. What’s different about us is we dealt with those tests sooner, not later. We began with few illusions or unrealistic expectations (unless you consider my wanting to have sex, get married and start a family to be unrealistic!).
And the truth is that once you have had your children straighten you in your wheelchair or drive it down the street when your hand gives out, your whole perception of propriety and family roles tends to get upended. Which is another way of saying that my disability has been, in a strange way, liberating, allowing us to live, and love, as we wish.
Ben Mattlin, who lives in Los Angeles, is the author of “In Sickness and In Health: Love, Disability, and a Quest to Understand the Perils and Pleasures of Interabled Romance,” to be published later this month.