My oldest cousin is getting married this weekend, and my youngest cousin is engaged. Two of my best friends are in long-term, committed relationships and talking about marriage. I turned 23 recently. All in all, I don’t feel any older, but I do feel more prone to existential crises, as evidenced by the last few weeks. I can’t stop thinking about the future, my future, and comparing that future to the future into which I’ve been socialized.
I don’t feel behind. I’m in grad school, whereas many of the people I went to high school with stopped after undergrad. I’ve published a book of poetry, started my own magazine, and I’m well on my way to finishing the first book in my space fantasy series. I genuinely believe I’m where I need to be. But it doesn’t make things any easier. It doesn’t keep me from feeling like I’m inherently … wrong.
As a high schooler, I had this complicated, romcom-informed fantasy in which some guy would learn to look past the wheelchair and see the “real me.” This was, of course, highly influenced by internalized ableism — who is this “real me,” and why does this nameless, faceless guy have to look past it to see her? But I realize now, years later, that fantasy persists. I pretend I’m over this concept of a normal life, with its predictable, emotionally colored beats, when in actuality, I am still waiting for that fantasy to become a reality.
It’s not just my love life. In all my idealized fantasies, never once did I envision living in my parents’ basement. Never once did I consider the possibility that my four closest friends would live in four different states (in two different countries, if you want to get technical). Never once did I predict the difficulty of finding a job, or round-the-clock care, or an accessible tattoo parlor. Compared with my friends’ lives, my life — with its frustrations and anxiety, its moments of complete ridiculousness — is boring. Run of the mill. Entirely dependent on those around me.
Connect with other patients and caregivers, find support and share tips for living well with SMA in our SMA News Today forums.
I feel stuck. Things I want to do, like move out of my parents’ basement, get a job, go on a date, feel completely out of reach. Meanwhile, people I grew up with are getting married, having kids — things I feel like I should be doing as a 20-something in the 21st century.
I’m not the only one going through this. I know plenty of people my age who feel divorced from the “idealized life”: kids, a stable job, maybe a dog or two (or in my case, a cat). There’s a disconnect between where we are and where we think we should be. But there’s an added dimension for people with SMA, I think, because so much of that idealized life is impossible or, at the very least, unlikely. As much as I like to believe I’ll move out one day, the chances of that happening are slim to none. And as for dating …
In one of the latest “Jane the Virgin” episodes I watched, the titular character, a 28-year-old widow and mother mentioned how hard dating is for people like her. It was meant as a joke — dating is hard for most people, Jane — but I couldn’t help but laugh, because dating is hard for people like me. Mention having a disability in your profile and all you’ll hear is crickets.
Last week, my therapist asked me what thoughts I’ve been avoiding, the thoughts that give me anxiety. I thought for a moment before saying, “Well, I’ve been thinking a lot about what will happen when my parents die. I don’t want my life to just … end.”
I wish I could end this column on a positive note. Some words of wisdom, maybe. But I don’t have any this week. As with most things, I need to learn to accept where I’m at, to accept the tension between optimism and realism. Life with SMA has never looked like, and will never look like, the lives of my abled friends. There’s a very good chance I’ll be single at my best friend’s wedding. I can get a job, but it probably won’t be the bookstore gig I dreamed about when I was 15, and my future apartment — this is the optimism talking here — probably won’t have open sightlines or subway tiles in the kitchen.
It’s a hard pill to swallow. But it is the pill — one I’m trying to dissolve, one day at a time.
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.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?