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.