True to my word, I joined a dating site this week. And by this week, I mean the day I wrote this column, since I’ve been putting it off all week. But I did it! Which means I can tell my therapist on Tuesday that, yes, I finally did the thing, and, yes, I absolutely listened to “Stronger” by Kanye West while setting up my profile. This was a confidence boost, naturally.
Bow in the presence of greatness, right? You should be honored by my lateness. And, of course the best line, which appeals to my ever-present cyborg sensibilities: Harder! Better! Faster! Stronger!
So I did it. But just because I did it doesn’t mean I wasn’t texting my friends the entire time, saying things like, “I FORGOT THAT I REALLY DON’T LIKE DATING SITES” and “MY HANDS ARE SWEATING.”
A lot of people reached out to me this week, mostly saying the same thing: Dating is hard for people like us. And I think a lot of that difficulty stems from an inability to see ourselves as worthy of love.
I was scrolling through OkCupid users today and had to laugh, because so many people gave one-word answers to profile questions and relied on pictures — usually mirror selfies, which made me feel like I was 13 again — to get attention. Meanwhile, I’m sitting here trying to figure out how to include my diagnosis in my bio. Do I just throw it out there, e.g., “I’m in a wheelchair,” and immediately move on to more important things like my love for Star Wars? It’s the best way, at least for me, but that doesn’t make it any easier. It doesn’t make my anxiety any less… cloying.
I had to mute OkCupid notifications a few minutes ago. Every time my phone buzzes I can no longer breathe.
Dating websites are so popular these days. When I tell people that, no, I’m actually not on Tinder, they give me the strangest look. And then they shrug, because it makes sense, in a way — why would someone like me need or even want to be on an app associated with casual sex?
This is, of course, incredibly dismissive, not only of my individuality but also the individuality of disabled people everywhere. Our desire for relationships — romantic, sexual, a combination of the two, even platonic friendships — while varied, is undeniable. And yet it is continually stripped from us, probably deemed an attack on societal disability, so often asexual in nature. When we, in turn, insist on recognition of those desires, our pursuits are seen as optimistic. My belief in, and visions of, my future love are hopeful, inspiring, but when my back is turned, I quickly become childish or naïve.
This happens to most of us, I think. Well-meaning people tell us that of course we’ll find love someday, we just need to find the right person, you know, because — and here they stumble, swallow, all flushed and beading sweat — our situation is, well, pretty unique, right?
We never see ourselves in movies, TV shows, and books, so we are consistently asked if, like, we can have babies, or if sex is possible. And when our stories go viral, it’s always because of a tragic accident: motorcycle pileup, paralysis from the neck down, did you hear she’s going through with the wedding? I hope she knows what she’s doing, I wouldn’t want her to be stuck with him for the rest of her life. And what about the sex?
It’s either pity or a dream — there’s no in-between. So when my phone buzzes, saying something about a new like or match or message, my body convulses. I don’t want to be on display, and that’s what this — this experiment — feels like to me, existing so unapologetically in a public sphere. Here I am, firm in my worthiness, my own lovability. To some it’s pathetic.
Still, it’s this or nothing, a continuation of things as they are — me and my cat and my ever-growing collection of poetry books. I can be brave or lonely and there is no in-between.
I tweet about being a romantic, how everything I do is for love, and it’s a joke, yet still true. Everything I do is in pursuit of love — recognition and companionship, but also self-love, forgiveness for the things this body cannot do.
Like my favorite lines from my favorite poem:
“…how the dog runs straight toward the pickup trucks break-necking down the road, because she thinks she loves them, because she’s sure, without a doubt, that the loud roaring things will love her back. … Perhaps, we are always hurtling our body towards the thing that will obliterate us, begging for love.”
But what can I do? I have no leash.
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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