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Two questions arose when I spotted the lanky, brown-haired guy wearing a band T-shirt, but I couldn’t tell you which came first: What would sex be like with him? And why was he in a wheelchair?
Marcus* was performing at a run-down comedy club with no air conditioning and no liquor license, delivering jokes like, “I started taking Ambien because I heard it makes you sleepwalk.” My initial burst of sexual curiosity quickly flared out. He was six years younger. He lived with his mom. And he couldn’t walk.
It was hard for me to see past the 300-pound power wheelchair when he started pursuing me romantically. I’d run into him at bars, parties and on OkCupid and send a silent prayer to the gods of romance: Please, please don’t let him hit on me. I’d feel like an asshole turning down the disabled guy.
But hit on me he did, via email: “What do you on the weekends. [sic] You want to hangout at something other than a comedy show?” When he called me up, I almost didn’t answer. But I figured I could at least do him the courtesy of turning him down directly rather than just ignoring his voicemail. We ended up having a great conversation. After I put the phone down, I was surprised to find 20 minutes had passed, and that I was looking forward to going out with him.
Over craft cocktails and a cheese plate, Marcus told me he had Beckers muscular dystrophy and had used a wheelchair since he was 18. The disease had weakened his heart, too: He had a defibrillator implanted into it and needed a heart transplant soon, which the doctors had told him he probably wouldn’t get.
I knew it wouldn’t be a long-term relationship. He might not even live to see our one-year anniversary. In a weird way, that made me want him more. Back then, I only recognized love when it came with serrated edges: if it was unrequited, tinged with dishonesty, or laced with substance abuse.
That’s not to say we didn’t have a healthy relationship. We had a lot of fun. We costumed at Mardi Gras parades, cooked out and watched New Orleans Saints games, went to parties, patronized Italian restaurants and did just about everything couples do. People would find delicate, probing ways to ask if we had sex. (We did. I was always on top.)
More often, they wouldn’t think we were dating at all. “Is this your brother?” one of my coworkers asked when she ran into us at a wine bar. And sometimes, they’d offer their own sex advice: “Don’t reproduce with that guy. It’s a horrible disease.”
As offensive as that sounds, these warnings had an element of truth. Muscular dystrophy (MD) is hereditary. Marcus’s sons would be healthy, but his daughters would be carriers, and there was a 50-50 chance their sons would get the disease. He didn’t want to risk passing it on, which didn’t fit with my goals. I wanted to get married and have kids someday, in a nebulous future that always seems five years away but that is bearing down more rapidly than I like to admit.
I skated the fine line between optimism and denial: Five years had passed since Marcus’s doctors told him he needed a heart transplant, and his heart was still beating. Maybe he could keep going into his 40s. That would be a decent run for our relationship, and then I’d be a young widow, which seems so much hotter than being divorced.
We could eventually have kids -- by the time they were old enough to procreate, maybe there’d be a cure for MD. We could live together in a little yellow wheelchair-accessible house. We could get one of those cute assistance dogs that wear vests. Or a helper monkey!
These dreams never seemed more vivid and attainable than when I’d hop on the back of his wheelchair like I was riding a scooter. We’d zoom down cracked Uptown streets, oak trees arcing their pale green leaves and Spanish moss overhead, wind in our hair, feeling the rush of the wheelchair battery’s 8 miles per hour. People mowing their lawns would pause to stare. I’d wave, feeling superior to all the nondisabled couples.
I knew I could lose Marcus at any time, and was keenly aware of this when I’d visit him in the hospital, or when I’d lay my head on his chest and feel the irregular beats of his heart and the edges of his defibrillator just beneath his skin. I’d wonder each time I left his house if this was the last time I’d see him alive. But I figured that, whether or not we want to admit it, there’s never any promise of a tomorrow with the people we love. My relationship brought this truth into stark relief.
After about a year of dating, the subject of living together came up. Marcus was hesitant, partly because of the logistical challenge finding a wheelchair-accessible house posed. Also, he’d never lived away from his mother, brothers and stepdad. He would need a lot of help with basic tasks like cooking and getting out of bed in the morning. His disability checks weren’t adequate to cover his share of the bills and rent, either.
I didn’t know how, but I was sure we’d find a way to make it work. One night, when I was drifting off to sleep and he was listening to Mates of State through his headphones, he said, “I love you. I think I’d like to live with you.”
I was excited to get underway with purchasing a house. I put down a down payment with a local nonprofit builder, who drew up plans for a pretty little two-bedroom home. There was a front porch, a deck, a big back yard and a wheelchair ramp. I loved it.
I shared the plans with Marcus, but he didn’t seem interested. He was busy with his comedy most nights, doing open mics and sketch comedy shows around town. I’d come to watch him, but even after the shows were over, he didn’t feel like hanging out.
If I went over to his house to visit, he’d say hi, then go back to watching basketball with his brothers, maybe having a cursory conversation with me during commercial breaks. He was always too tired for sex. I began to feel like an adjunct to his life rather than a participant in it, but I wasn’t sure if that was because he was consciously cutting me out, or because his disability meant that we would never have the kind of intimacy and exclusivity of a nondisabled couple who lives alone, without the constant support and presence of family.
Things came to a head when I had a seizure. I have epilepsy, but it had been 15 years since my last grand mal. I was shaken and upset when my neurologist said I’d have to go on medication and give up driving for at least the next six months. Marcus was unmoved.
“Everybody has something. It’s not that big of a deal,” he said when I told him. “Can you at least get out of your chair and get in bed and cuddle me?” I asked.
He refused. “It’s too much work,” he said. He didn’t even bother to turn off the TV.
It shouldn’t have come as a surprise when, a week later, he dumped me in a park on a perfect spring day. “We want different things,” he said, an explanation that didn’t answer any of my questions at all, but is perhaps the only reason couples break up. I wanted to be with him; he didn’t want to be with me.
I still don’t know exactly why he dumped me. I told myself he secretly did want to be my boyfriend -- he just felt he couldn’t because of his illness. But though this answer may be easier to swallow than outright rejection, it isn’t rooted in reality — we didn’t get together because of his disease, we didn’t break up because of it. We broke up because we wanted different things.
After about six months, I returned his spare wheelchair charger and he gave me back a few bras I’d forgotten in his bedroom. We talked about a new comedy troupe that he hated. He had a good haircut, and I told him so. Midway through our conversation, his phone rang and he answered. I stood around for a while, as I’d done so often in that room, waiting for him to bring his attention back to me. But he didn’t, and I realized my chore had been done. There was no reason for me to keep waiting for him.
So I left.
*Name has been changed.