Conference Chaos: Returning to Reality After a Weekend With My SMA Community
“You just gotta keep livin’, man. L-I-V-I-N.”
Matthew McConaughey first delivered his iconic “Alright, alright, alright” catchphrase in the 1993 cult classic “Dazed and Confused.” Still, it’s his character’s other most quotable line in the film that is perhaps more poignant and philosophical. When McConaughey’s David Wooderson, the oddball townie who lives for drugs and rock ‘n’ roll, is tasked with offering sage advice to the high school quarterback and central protagonist, he keeps it simple. His principle of “livin'” is one that rejects societal expectations in favor of gratification and embracing the present.
True, Wooderson may not be the ideal role model for any sane human being, but his character and the film as a whole capture the youthful spirit of liberation and all the messiness that comes with navigating high school. “Dazed and Confused” is filmmaker Richard Linklater’s love letter to being a teenager and finding solidarity with other wandering souls.
As I sat outside the Disneyland hotel in Anaheim, California, and watched hundreds of other wheelchair users congregate, I felt like I was a character in Linklater’s bohemian saga. Here I was, surrounded by members of my community for the first time in three years. It was surreal, but I also knew I had little time to bask in my thoughts and emotions. As soon as registration opened, chaos would ensue.
The annual Cure SMA conference may bear the guise of a medical event, but it’s most certainly a chance for my community to party all weekend. And party we did.
Yes, there were still plenty of research presentations and informative workshops throughout the weekend. I had the privilege of moderating a panel about advocacy through writing and social media with SMA influencers Shane Burcaw, Allie Williams, Kevan Chandler, and our very own Brie Albers. This session will stick with me for a long time. I saw the faces of bright individuals who were eager to share their stories and change the world for the better. To sit on stage with a group of real-life superheroes was nothing short of exhilarating.
From left, Kevin Schaefer, Allie Williams, Brie Albers, Shane Burcaw, and Kevan Chandler at the 2022 Cure SMA conference. (Courtesy of Kevin Schaefer)
And then there was partying. Though the adults with SMA had our own lounge at the conference center, our main headquarters was the Tiki bar in the center of the hotel. Our ragtag crew stayed out late, laughed and cried with one another, and wished for time to stand still even as it slipped away.
The SMA conference is the only time when my people and I can exchange caregiver stories and swap dark jokes about trauma we’ve experienced without any uncomfortable stares from strangers. It’s a time when wheelchair batteries die in the middle of the Disneyland park, and you have to rely on your buddy’s best friend to push you around the rest of the night. Yes, this happened to me, and we laughed the whole way through. When you’re with others who speak your language and understand you without explanation, that feeling is something you wish you could replicate all the time.
It was also cathartic when fellow attendees recognized me for my work here at SMA News Today. “Are you the host of the SMA podcast?” isn’t a question I’m asked at home.
Two of the brightest stars around! Kevin Schaefer, left, and LaMondre Pough at the recent Cure SMA conference. This was their first in-person meeting, and a surprise at that! (Courtesy of Kevin Schaefer)
But alas, the conference couldn’t last forever, and it was time to return to reality. This year’s conference may be over, but its spirit doesn’t need a physical presence. I’m in a group chat with a bunch of people who went, aptly titled “Conference Chaos.” Ever since we left, we’ve continued to blow up one another’s inboxes. The camaraderie we share extends well beyond our geographical locations.
After a month of traveling across the country, touring sites like the Warner Bros. Studio Tour in Hollywood, and reuniting with my SMA family, reality can seem a little daunting. Yet there are still adventures waiting for me, so long as I keep my eyes open. Like the great philosopher Wooderson says, we just gotta keep livin’.
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
Comments