I went to therapy this week for the first time in, get this — 14 months. I talked about loneliness; a familiar creature, at least to me. I’ve always felt its dark shadow, heavy and suffocating — even as a seventh-grader, during what I believe to be my first depressive episode. I was a loner. I didn’t have many friends, and the few friends I did have were largely online. I was never bullied — I never felt unsafe — but I was never included either, or liked. I was different. I wasn’t normal, I didn’t do normal things, I stayed inside and Instagrammed pictures of my service dog while watching my youth group play capture the flag along the windy shores of a Minnesotan lake during the fall.
I was apart. I was dis– something (insert here). Disabled, dissatisfied.
Things are better now. I have friends, online and off. I still take pictures of my pets, but am confident enough to include things like selfies and hospital bracelets. I’m not as lonely, but that doesn’t protect me from feeling all the different kinds of loneliness, especially during a depressive episode.
“I have friends,” I told my therapist. “Lots of friends. More friends than I ever thought I’d have. But I’m still — lonely. I don’t need a romantic relationship, but I know I’d be happier if I was in one.”
And my therapist, ever the wise one, came back with, “You want to be seen.”
I remember thinking “That’s it. That’s what I want.”
There’s a lot to unpack there. Invisibility has always been intricately intertwined with disability for me; people cutting me off in the halls of my high school, hitting me in the head with their textbook-laden backpacks because they just didn’t see me. Like the tired cliché of being picked last for the dodgeball team. I couldn’t play dodgeball, and usually parked near the edges of the gym so I could watch everyone else play in relative safety, but the illustration works.
Maybe it’s not so much about being seen so much as it is about being chosen.
Two of my best friends are in long-term relationships. They’re happy. They’re in love. And I, too, am happy for them, in love with their love. But again that feeling of apartness — to be disabled is to be disconnected from the regular progression of things, the unfurling of life as we know it.
I’m 22 years old and still live with my parents. I’ve never had a boyfriend. I filled out my first job application a week ago, and still have no idea how to drive a car. These things aren’t right. They go against the grain. I’m either a burden, a drain on resources, or — yes, again with the apartness —an outlier.
Outlier, noun: a person or thing situated away or detached from the main body or system; a person or thing differing from all other members of a particular group or set.
My therapist has been trying to get me to join an online dating site for years now. And I did, actually, a few months ago — I had a Tinder account for, like, two weeks, and even matched with a couple of guys. But every time I tried to start a conversation I couldn’t get past the whole “I’m in a wheelchair” bit. Most people don’t give me a second look, and the few that do …
Well, I’m still single. That says everything right there.
Knowing you are worthy of love is one thing. Putting that belief into practice is another, because it’s not just about the other person, the people you love — it’s about you, and the ableism you carry with you.
To be chosen is to be seen.
Yesterday my PCA and I were talking about Tinder, how sometimes you just have to make the first move. For someone who believed for over a decade that moves were futile, ultimately a mark of hopelessness and naïveté (who would ever want to date someone like me?), taking initiative is hard. It’s a lot easier in my game of D&D, with my vengeance paladin taking a -1 to initiative rolls due to lousy dexterity stats. Art imitates life.
But part of the reason I’m writing these columns, especially as I fight through this depressive episode, is to keep myself accountable. So I’m going to join some dating sites this week, strike up some conversations. I have to try, right?
I have to try.
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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