When I first started writing this column, I wasn’t sure what to say. I have a list of potential topics that I’ve been adding to sporadically, but nothing really jumped out at me. You’re probably tired of hearing about my headaches. To be frank, I’m getting tired of talking about them. But it’s the defining aspect of my life right now. I get up each morning, and my head hurts; I go to bed each night, and my head hurts. It’s all there really is, the pain and the waiting.
Don’t get me wrong. I can deal with the pain. Pain and I are lukewarm colleagues: He stays out of my way and I stay out of his. When we have to acknowledge each other, I down some Tylenol, put on my aqua blue sinus mask that’s surprisingly just as effective with migraines, and studiously pretend my head isn’t throbbing. When I told my allergist last week that I pretty much have some sort of migraine every day now, he looked at me as if I were a fierce pain warrior, when in actuality I’m just … used to it. This is what it looks like for me to live in a body. This has been my reality for 10 whole months — but it’s nothing compared to other people I know who live with chronic pain.
If it turns out that I do in fact have migraines, I can deal with it. There are dozens of things I have yet to try, like acupuncture and cognitive behavioral therapy. I just need to know what’s going on.
It’s slowly starting to occur to me that I miss school. I need the distraction, just like I needed the seven-hour D&D session my friends and I had on Sunday; just like I need the ridiculous amount of self-insert role-play my best friend and I have been doing as of late. I need to do something. I need somewhere to put all this energy so I don’t end up Googling migraines for the fifth time this week.
Someone I follow on Twitter said that being disabled and mentally ill is a full-time job. It’s true. It feels like I’m dying. I honestly have no idea how much energy I’m funneling toward ignoring that thought, that idea of dying, of dying slowly, of dying as I type this. Tug on that thread and I spend the next two hours refreshing Tumblr like a madwoman, unable to do anything else, my brain a hamster on a wheel, running, tripping, falling …
I guess that when it comes right down to it, I don’t know how to be a fully realized person right now. I’m not a writer, or a dungeon master, or a grad student. I’m someone who might have migraines, someone who is waiting impatiently for their neurological evaluation next week.
The one good thing about this is that I wrote an essay about it. Maybe not the healthiest coping mechanism out there, but there’s something to be said for turning my pain — my frustration, my unease, my dread — into something productive. If you follow me on Twitter, you’ll know I’ve been working on a piece about “Critical Role,” that Dungeons & Dragons livestream I can’t stop talking about. I finished it a week or so ago, and after two people told me it’s the best thing I’ve ever written, I submitted it to some magazines.
It helped to write about it; to write through it. I’ve worn so many hats over the years — daughter, SMA patient, Jonas Brothers aficionado — but the writer in me remains through it all. I make sense of things, of life, by putting words onto the page. So while I wait, I write. Some days it’s the only thing I can do.
Like Lin-Manuel Miranda sings in “The Hamilton Mixtape,” I’ll write my way out. (Haven’t you missed my LMM references?)
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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