I have called myself a writer for the longest time, and in many ways, I suppose I still do. I am, after all, a writer. But I have long since changed my Twitter bio from “writer” to “storyteller” because “storyteller” is far more reflective of who I am as a person. I write, but it’s not just literature that I love. In fact, I almost prefer video games and television shows to books — almost, but not quite. It’s any and every kind of media that I enjoy.
Stories are at the center of my being, the heart of my heart. So, I call myself a storyteller, and the term has come to define me. I am most certainly not defined by the fact that I live with spinal muscular atrophy.
I am drawn to stories. So the question then becomes this: What can I say about stories that hasn’t already been said?
I refresh Tumblr for the third, fourth, fifth time today, and see the post that’s been sitting in my drafts for over half a year. “I keep thinking about stories,” it starts, “how stories project themselves onto real life.”
I’ve been writing a book series for over a decade. It has changed, morphed, grown its own teeth, but at its heart — inextricable, really, from my own heart — is a girl in a wheelchair. She travels the universe, only to save it. She falls in love, and doesn’t once consider suicide. She laughs and makes mistakes and is human, and she means everything to me — the character I needed when I was nine years old, 12 years old, 15. And the character I still need now, at 21, a senior in college.
Consider a world with no reflective surfaces. How do you know what you look like? The answer, of course, is simple. You don’t. And so, in a small, quiet way, a part of you — the part found in mirrors — does not exist. You can only unravel from there: a great, big unmaking. Very soon, you cease to exist. The world did not know you, so the world does not mourn you. And that is the way you die; there, then gone.
We see ourselves in stories. But when we do not — when we are not seen in stories — when stories do not see us, what, then, becomes of us?
I’ve never seen myself in a story. I’ve come close — a boy with autism, maybe, or a girl with anxiety, but none of these reflections are true to my image. They can walk. They can dress themselves, feed themselves, shake a stranger’s hand. Even the characters with SMA or muscular dystrophy (MD) are stronger — one might even say less disabled — than me. So even when I see myself, it is never my whole body: only a limb, severed, like something from a dream.
This is called erasure. I am being erased. The world denies my right to exist — in stories, yes, but stories transpose themselves onto the real world. I’ve never seen myself in love, so I’ve doubted my ability to love. I’ve never seen my body, so I’ve doubted it, too — never its existence, but its right to exist, in opposition to the bodies I see in movies and TV shows. And so I erode. I disappear, a fragment at a time.
Johanna Hedva refers to the “trauma of not being seen” in her Sick Woman Theory. I think “Yes, this is why I write!” This is why, after reading a book about cyborgs and princesses and, yes, revolutions, I create a Google doc. I name it “KISSING,” all caps, and I write a scene where two of the characters in my book — one, a girl in a wheelchair, with crooked teeth and sweaty palms and, no, her SMA isn’t just a ploy for diversity — finally kiss, after hundreds of pages of slow-burn. Part of me is embarrassed. I’m not supposed to want like this, but then I think about a post I reblogged months ago: “Girls get made fun of for everything. You might as well do what you want.”
I write to undo. To heal, and to be seen.
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.