I was diagnosed with spinal muscular atrophy at nine months of age. No one ever knows what SMA is, so I always say it has something to do with my cells and their ability — or, I suppose, inability — to communicate. My brain tells my body to move, but my body never receives the signal; the command gets lost somewhere along the way. This probably isn’t the most accurate of descriptions, but it helps people understand, so I find myself coming back to the metaphor, again and again.
Here is what the metaphor — or even the diagnosis, given to my parents by an army of doctors, mouths frozen, masks like sharp white teeth: SMA type II — doesn’t say: I used to be able to sit up on my own. I used to be able to feed myself, even if the process itself was messy and tiresome. A few years ago, as a senior in high school, I was able to write; now, as a senior in college, I can barely hold a pen. My fingers curl helplessly against the barrel, trying to remember, trying to replicate something that used to come so easy. So, the fact is this: SMA is degenerative, which means I’m getting weaker, which means…
… my body is dying.
This isn’t new to me. I grew up with this knowledge, as surely as I grew up with my palm-sweaty hand wrapped around my father’s pinky finger. The possibility — probability — of death is as familiar to me as my own body: Warped, twisted, a terrible aberration.
For the longest time, I let it get to me. I was scared, not just of death, but of who I was with SMA. I didn’t want to be the girl in the wheelchair, or the girl with the feeding pump (that would sometimes alarm in the middle of an exam), or the girl with the crooked teeth and the funny voice. I was, in many ways, ashamed of that girl. I hated her, and that hatred led to the worst kind of self-violence: Burial. I pretended to be normal, and it worked for a while. I thought I was happy, but the happiness I felt was only a fraction of the real thing, married by depression and anxiety and self-hatred. So, she stayed there, in the grave I dug, for years.
I wrote a poem a while ago about a wolf. Stuck in a trap, she does the only thing she can think of: She “bleeds a gun barrel.” She frees herself.
I struggled to come up with a title for this column. Not because I didn’t have ideas, but because none of the ideas I had felt right. So, I started thinking about SMA. What SMA means to me, after all this time, and my mind brought me to that poem, sitting patiently in my Google Drive, waiting for publication: “The wolf finally frees itself.”
I forgave myself, finally, for burying her. But the exhumation process continues.
Things have changed. And I wish I could pinpoint when exactly, or why, but time blurs everything — even something as sharp as this. But the fact remains: I am no longer ashamed of that girl, the girl in the wheelchair, me. Finally, for the first time ever, there is no fear.
So, I think about column titles. How the wolf takes its own life and, in this way, frees itself, like chewing its own leg off. How, as a wolf, I can bypass that kind of self-violence, and free myself another way.
SMA and I have a complicated relationship. We probably always will, so long as it remains the dark maw of the hunter’s trap. But I’m no longer afraid of what SMA has made me. I am the girl in the wheelchair, the girl with the feeding pump (that still alarms at the worst times), the girl with the crooked teeth and the funny voice — and that’s okay.
I start there, then. I start here: It’s okay, you’re okay, I promise. And, as the wolf frees itself, I free myself, 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.
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