There comes a point in every SMA patient’s life when someone asks, “Why are you in a wheelchair?”
I like to think I’ve gotten pretty good at answering that question. I’ve done the research; I’ve looked up all the scientific terms; I’ve been through my fair share of stilted, unsolicited confessions. Nowadays, I say something along the lines of, “I was born with a neuromuscular disease that weakens my muscles to the point that I can’t do certain things. I’ve been in a wheelchair for as long as I can remember.” If the person asks questions, I answer them. If the person apologizes, I say it’s fine, I’m used to it, that’s life.
It used to cause me a lot of anxiety, telling people for the first time. I remember talking to people online and sending them a string of messages, talking about how there have been some less-than-great reactions and how I prefer to just … get it out of the way. Like ripping off a Band-Aid: The quicker you do it, the less it hurts.
Most of the time, people are fine with it. They’re curious, sure. Sometimes they even ask me if I can have sex, which never fails to make me laugh. But they’re fine. When I tell them about the guy who broke off a budding relationship when I told him I’m in a wheelchair, they range from shocked to incensed. Every time the “reveal” goes well, my propensity for anxiety decreases tenfold. I’m at the point where I can tell someone that yes, I am in a wheelchair, and yes, I can still have sex, without feeling like the world is about to end. And it’s nice. It gives me hope that maybe one day I won’t be so preoccupied with all the things my body can’t do.
Dating, I’ve found, is different. How do you tell someone you’re in a wheelchair without scaring them away? For that matter, how do you include disability in your profile without making it into a thing? I eventually settled on #DisabledAndCute, because I am both those things in equal measure, but it still doesn’t feel like enough. I tend to overshare, especially when I’m anxious, so when it comes to dating, it takes everything in me not to just … spill.
I’ve been listening to Brené Brown’s talks on vulnerability lately. How important it is to show up, to let yourself be seen. And my little dating experiment has really forced me to come to terms with how averse I am to vulnerability — at least when it comes to dating. I’ve written several columns on love, my pursuit of love, and the voice in my head that tells me I don’t deserve love, but it’s something different altogether to actually do it. To field questions about SMA, my body, how my body works. It’s hard.
I often tell my friends that everything I do is for love. I’m joking, of course, but at the end of the day, there’s truth to it. I write — this column, my book, the occasional “Star Wars” fan fiction — because words are how I manifest love. I study counseling theories and philosophies of the mind because I love people, and because I want to help people love themselves. My foray into dating has a lot to do with romantic love, but it also is an exercise in self-love: I reactivated my OkCupid account because I could no longer deny the part of me that craves connection. And why should I?
It’s hard. Writing this column is hard. Talking to people on OkCupid and fielding questions about my disability are hard. I feel like I need to defend myself — my presence on a dating site, my desire for intimacy. My disability does not, and should not, negate my real, human need to be loved.
In truth, this column has been a way for me to navigate life with a disability. I’m no closer to figuring it out than I was in March 2017. But I think, at least when it comes to love, I am less willing to let other people dictate what I deserve. I spent 23 years on tiptoe, waiting for someone to “look past” the wheelchair, blushing in embarrassment when I told my therapist that yes, I want to date, I want to be in a relationship. No more of that. Life is too short.
I’m done asking for permission.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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