Some of you may know that a year or so ago I founded Monstering, a magazine for disabled women and non-binary people. It started with the desire to create and produce a small, handmade zine. I’d always wanted a space to call my own, a space to share with people like me, and Monstering allowed me to funnel that want into something productive.
It also allowed me to explore a theory I was teasing apart at the time: sociocultural monsters — fictional or real — and disabled people sharing a common history, and even a common legacy. Some of us are monstered by our bodies, with their inability to perform “normalcy”; some of us are monstered by mental illness; and some of us, like me, are a joining of both. In any case, we are all shunned, stripped of basic humanness, relegated to the outside. (For those interested in this concept, Monstering’s mission statement goes more in depth. Jeremy Jeffrey Cohen’s essay “Monster Culture [Seven Theses],” is what gave me the idea in the first place).
Founding Monstering gave me the push to accept and celebrate my disabilities. Just like a monster defends and protects its abnormalities, so I began to love my SMA, dysthymia, anxiety, and my sleep disorder. They became a source of power for me, and through my work as Monstering’s editor-in-chief, my bio went from “storyteller” to “crip cyborg storyteller” to simply “Disabled.” I owe so much of my personal growth to Monstering, and now, after a year — and several long weeks of hard work and late nights — our inaugural issue is finally out. You can read Apotheosis here.
I say all this because my time with Monstering has been formative, and I’m looking forward to what the future holds. But now, after working myself to the point of exhaustion, I finally have a moment to reflect.
My body is tired
I’ve been going nonstop this summer. From my Amtrak residency, to my hospitalization, to the release of Apotheosis — and now, next weekend, I’ll be heading to Indianapolis with a few friends to watch “Critical Role“ (that D&D show I mentioned a while back) live.
This fall is my last semester at UWM, and then I’m heading to grad school. I’m excited, but I’m also — and this is the important part — tired. My body is tired. I’ve been pushing myself so hard for so long, and now it’s finally catching up with me.
I keep thinking about this Twitter thread by Annie Segarra. How easy it is to dismiss the body’s need for rest and recovery, especially when you’re chronically ill. You don’t want to appear “too sick,” because then everyone will forget just how normal you’re pretending to be. For me it’s my sleep schedule. I go to bed around 11:30 at night, and am up at about 9:30 a.m every morning. That’s a good 10 hours of sleep, which is what my body needs to be healthy. But the reactions I get are awful. I can’t remember the last time I slept in that late, must be nice — like it’s a lifestyle choice, and not something forced on me by my diagnoses.
Apotheosis came out two days ago, and I’m already looking ahead to the next thing. But that’s just it: Sometimes the next thing is, in fact, nothing. And that’s OK. There’s nothing wrong with that. Bodies need rest, and disabled bodies in particular — I’m talking about our minds, too, the interplay of body and mind, so really just our selves — need rest.
Rest and productivity
I’ve written several times about this on Twitter, but it’s easy to forget, so if you haven’t heard this in a while, let me be the one to remind you: It’s OK to be tired. You can take a break. You can absolutely sleep until 10 or 11 a.m. And you can absolutely wait until you have the energy to do the thing you want to be doing — you know the one.
I’m going to take my own advice. I’m not going to set my alarm; I’m going to sleep as much as I need to, for as long as I need to. I’m going to do what needs doing, and then I’m going to enjoy this brief respite. I’m going to forgive myself for not being productive, because productivity is less of a state and more something you return to, on and off again, once you’re energized again.
I’m going to rest now. And when it’s time to get to work again, I’ll be ready.
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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