Every summer, I relearn the importance of community.
It’s not that I forget. As a grad student in counseling, the importance of community was drilled into me from day one. So I know the importance of community — intellectually. But I’m only just discovering the emotional truth of it all.
There’s something magical about being with your people. And I say that as an introvert. I never understood the power of the disabled community until I connected with people on social media. I never understood how lonely I was as a writer until I joined a group that revitalized my love of storytelling. My life has been shaped by the communities I’ve been lucky enough to participate in, and for that I am grateful.
2023 has been a weird year for me. From health problems to career changes, I feel like I’ve been barely keeping my head above water. Late last month, when my parents and I set out for this year’s Cure SMA conference, I was full of dread. I was so tired I almost didn’t want to go.
But I did. And, just like magic, the SMA community uplifted me in ways I never thought possible. With every person I met, I was reminded of why I do what I do. In the words of Mia Mingus, I write to leave evidence: “Evidence that we were here, that we existed, that we survived and loved and ached. Evidence of the wholeness we never felt and the immense sense of fullness we gave to each other. Evidence of who we were, who we thought we were, who we never should have been.”
Of course, there’s more to it than that. I write because I love it. Because stories are the glue that holds me together. I am my truest self while writing, and that in itself is reason enough.
But I write for my people. And by that I mean those who never saw themselves in the stories they loved. I write for every single person I met at this year’s conference, just like I write for the version of myself who thought a life in a wheelchair was a life to be pitied. She wasted so much time hating herself. Everything I write — everything I do — is for that lonely, loveless girl, who looked at the world and wondered if it would ever love her back.
Spoiler: it did.
Updates
🐺 I’ve published a whole slew of columns since March! Some of my favorites include “The truth about living with your middle-aged parents,” “Rewatching a TV series is helping me get through a quarter-life crisis,” “Yet another insurance obstacle on my journey with Evrysdi,” and “’A Whole New World’: Celebrating the SMA community at EPCOT.”
🦽 My latest collaboration with SMA My Way, “Dealing with Rejection,” is live!
🌷 A few months ago, I decided to temporarily shelve THE SAINT AND THE SPIDER. It was a long time coming, and ultimately, I believe it was the right decision. You can read about the decision here. But in happier news, I’m about to start drafting my next book, AN ANGEL IN THE GARDEN! Keep an eye out on social media for more info.
🧵 Speaking of social media, I’m officially on Threads! You can follow me here.
💖 My very best friend, Sherry Toh, is currently fundraising for her first year of Evrysdi (risdiplam), a disease-modifying therapy for SMA. Please consider donating to or boosting her campaign.
Studies in Light
“Studies in Light” is a biweekly newsletter on writing and thriving as a disabled creative. While the publication is free, I do curate exclusive content for my supporters. If you want to join the community, there are two options to choose from:
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That’s it for now! As always, thanks for letting me into your inbox. Stay safe and remember that you’re not alone.
Love this! I really need to get to the SMA conference at least once because it sounds awesome. I’m glad you’re continuing to write and I can’t wait to read your stuff. :)