Reflecting on 2 Years of SMA My Way
It’s strange to think that a little over two years ago, I witnessed — and participated in — the conception of SMA My Way, a patient-focused community sponsored by the biotech company Genentech to support all of those affected by SMA.
A lot has changed since then. I graduated with a master’s degree, finished writing my novel, got a cat, and, y’know, survived the Year From Hell. I’m a different person than I was in 2019. So, it makes sense that, in reflecting on the past two years, I’m seeing SMA My Way through a different lens.
I still have a mad case of impostor syndrome. It’s not easy being an aspiring writer in a room full of bestselling authors. I don’t run a business, and I don’t use my master’s degree for anything except strong-arming my friends into starting therapy. At the latest SMA My Way meetup, contributors were asked to choose an object that represented us as people. Unsurprisingly, I panicked, and said the first thing that came to mind.
Not the first draft of my novel, which I printed in spite of my environmentalist tendencies.
Not my bookshelf, or my diploma, or my ratty Jonas Brothers tee.
I chose my cat tree because, and I quote, “My cat is my life.” (Rey is great, but I swear to God, I’m not that much of an old cat lady.)
Maybe the pandemic has made me less cool. I don’t know. But I still feel the fluttery nerves of “not enough-ness” whenever I hop on a Zoom call. My brain cycles between the same two thoughts: “I’m not contributing enough” and “I don’t deserve to be here.” Sometimes I think both thoughts at once!
Insecurities aside, I can’t tell you how fulfilling it’s been to watch SMA My Way go from idea to proof of concept, to what is, frankly, an utterly sexy website. On bad days, I don’t feel like I belong, but even my impostor syndrome wilts in the face of how cool it is — not just to contribute, but to witness it unfold. It’s meaningful in the way that writing is meaningful. In devoting myself to an endeavor, I get the privilege of watching something grow.
At the end of the day, I’m new to the SMA community. I’ve only been connected for a few years. But the strides that have been made since 2017 are incredible. That includes available treatments. Kids with SMA have options now, options that seemed impossible when I was growing up. Part of me is sad — I’ll never know what it’s like to be a mostly abled kid. But most of me is ecstatic.
The kids deserve it. The parents deserve it. And we deserve it, too — the 20-somethings who went their whole lives without community.
I don’t know what’s next for SMA My Way. I don’t know what’s next for the 20-somethings, the kids on Zolgensma, the parents who bounce between conference booths like Energizer bunnies. But here’s what I do know.
I’m hopeful.
Maybe someone will come up with a cure. Maybe society will revisit its views on disability and treat us like actual human beings. (See: marriage inequality, subminimum wage, widespread infrastructure inaccessibility.) Maybe nothing will change, and in spite of that nothingness, we’ll cultivate community — as folks affected by SMA, yes, but also as people with abnormal body-minds. Maybe Disney will finally get its act together and create a princess in a wheelchair. (When you wish upon a star?) Maybe something unbelievably good will happen, and everyone will benefit, especially those who are so often overlooked by U.S.-centric campaigns.
I don’t know! But that’s the exciting thing. In the not knowing is the opportunity to make the impossible possible.
Let’s get to it, shall we?
***
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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.