Letting My Body Be a Body

Along with all my other health problems, I’ve been dealing with cystic acne since high school. At the time, I hoped it was nothing more than regular acne that would run its course and become a non-issue once I “grew up.” But in reality, the only reason it’s gotten better is that I’ve figured out how to manage it.

Five milliliters of amoxicillin once per day is enough to keep my skin clear. If I skip a few doses, I start to break out. If I don’t get back on my prescription within a week or so, my body gets angry, and I spend the next month staring mopily at the closest mirror.

Most people assume it’s a dietary concern or a laziness issue: If you keep breaking out, obviously it’s because you’re eating terribly or not taking care of your skin. And sometimes that’s true! But most times it has nothing to do with habits. I eat more healthily than a lot of people thanks to my feeding tube, and none of the skincare products I’ve tried — and I’ve tried a lot — do much of anything. It’s just the way my body is. It sucks, but so does my SMA. It’s something I’ve learned to live with.

Amoxicillin works for me, but every year or so I break out in some painfully obvious place. This time it was my left cheek. I woke up a few days ago and could feel it, just like I can feel an oncoming depressive episode. It’s not objectively a big deal. As long as I double the dose of amoxicillin, it clears up within a few days. However, it’s still a source of anxiety for me because I hate walking around with an oozy glob on my cheek. They hurt, they’re impossible to conceal, and most of all, they’re embarrassing. I’m 23! Acne shouldn’t be a problem anymore! Yet here I am, furiously Googling home remedies for cystic acne like it’s 2010.

My breakouts are fraught with annoyance. I constantly check the mirror on the off chance that the swelling has gone down some. I can feel the tension in my body. Whenever someone looks at me, I freeze up, muscles clenching in anticipation of their silent judgment. I went to Target the other day to stock up on smoothie supplies and hated every minute of it. I’m always aware of how I come across to people — the wheelchair, the bony limbs, the misshapen skull — but when I’m going through a breakout, I’m hyper-aware, flinching at every possible encounter.

I don’t want people to see me like this. My disability is all fine and well, but the thought of bringing my bumpy, inflamed skin into the public sphere? No thanks. Too much vulnerability for me.

This time around, though, I was reminded of a quote I saw on Tumblr a while ago. (Ninety-nine percent of my self-revelations come from Tumblr, which would be embarrassing if they weren’t so transformative.) In “Women Who Run With The Wolves: Contacting the Power of the Wild Woman,” Clarissa Pinkola Estés writes, “There is no ‘supposed to be’ in bodies. The question is not size of shape or years of age, or even having two of everything, for some do not. But the wild issue is, does this body feel, does it have the right connection to pleasure, to heart, to soul, to the wild? Does it have happiness, joy? Can it in its own way move, dance, jiggle, sway, thrust? Nothing else matters.”

Now, every time I look in the mirror, I think of the wild issue: Can my body feel? And of course, the answer is yes. Yes, it has joy. Yes, it can dance in its own way. (An important addendum, and one I find myself returning to, is that when it comes to embodiment, issues of how become largely unimportant.) What does it matter if I’m breaking out? My body is healing itself in its own way. I think I’d be happier if I just gave up and let my body do what it does best: Be a body, in all its wild and glorious imperfection.

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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.