Between the wheelchair, the pristine white Keds, and the pink baseball hat, I stand out. But I can’t say that I’m used to strangers stopping me in the middle of a reception hall so they can compliment my writing. “So you’re the famous columnist!”
Am I? Is that who I am now? The content creator from Minneapolis-St. Paul who writes authentically about living with SMA? I’ve been in a constant state of disbelief, surrounded by YouTubers and bloggers and miscellaneous social media influencers who have never heard of me or this column. I’ve always struggled with imposter syndrome, but my trip to Anaheim, California for the 2019 Cure SMA Conference really drove it home.
I’m not sure what I can talk about yet, so I’ll be keeping things under wraps for a little while longer, but suffice it to say that I’m blown away. (There’s a “Hamilton” reference I could make here, but I feel like that would undercut my point.) I filmed an interview last weekend, and as they fitted me with microphones and hair lights, someone mentioned how comfortable I looked on camera. “You’re an influencer. You must do this all of the time.”
Influencer? Is that who I am now? The social media influencer from Minneapolis-St. Paul who’s comfortable on camera? “I’m a writer,” I wanted to say. “I’m never on camera.” But I was a professional, playing at the highest level of my intelligence, so I swallowed a comment about Prozac and anxiety and kept going.
There were moments of normality. Walking through Downtown Disney. Weaving between crowds in Fantasyland. Holding my breath on the monorail, because I don’t trust anything that moves if it’s not my wheelchair. Even sitting at a Tiki bar with people I’ve known for years, talking about work of all things.
I was the first columnist at SMA News Today. Somehow, for some reason, I forgot that. A few of us columnists met up for dinner, and as we talked about our respective BioNews sites, my friend and fellow nerd Kevin Schaefer referred to me as “the one who started it all.”
The world stopped for a minute. The one who started it all? How is that possible?
This column has become so integral to my weekly flow: Every Wednesday, I sit for about an hour and write about life with SMA. It’s an outlet. Catharsis. I rarely know what I’m going to write about until my draft is due. Some days I worry I’ll run out of topics, but at the end of the day, I always come up with something. It’s just what I do.
I don’t think about it too much. And maybe that’s the issue. I’ve been writing this column for years, so I’m more or less used to the idea of performative vulnerability. I don’t like that term, but that’s what it is. Nothing about this column is performative in the sense that it’s inauthentic — I try very, very hard to be real, even when it hurts. But I put all this into words so you can partake in it. Experience it. In that sense, I am performing, making things public, storytelling my way through life with SMA.
But you are faces behind a screen. I live my life, and every Wednesday I sit down and write about it — and 800 words later, I’m back at it. I intentionally detach from my columns, because if I don’t, I’ll lose myself in them. So I forget that people read this. I forget that people know me, that they see the girl in the pink hat and white Keds and go, “Oh, she’s that famous columnist.”
A lot has changed since I started this column. I’m a college graduate now, well on my way to finishing my master’s in community care. I’m two months away from finishing the first draft of my book. I am, for the first time in my life, happy — and not just because I’m overlooking the Pacific Ocean, the wind buffeting the van. Not just because I’m sunburnt and sleepy, the world stretching before me in a soft, blue horizon. Not just because things are falling into place in ways that feel like a dream.
The wolf finally frees itself is the title of a poem that I wrote years ago, about a wolf in a trap that chews through its own leg to get free. Grotesque, I know. That’s poetry for you. But it’s fitting. The past two years have been an exercise in gnawing my way free.
I’m not there yet. I doubt that I will ever be. But I’m closer than I was two years ago, and I’m glad you’re on this journey with me.
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.