The Fellowship of the Wheels

I guess the cat’s out of the bag. The featured photo here is the first official cast photo of Amazon’s upcoming “The Lord of the Rings” television reboot. Apparently, they wanted something different and modern, hence the name “The Fellowship of the Wheels.” 

OK, I wish that were the case. But still, when we took this picture at the 2018 Cure SMA Conference, this caption instantly came to mind. Beyond my ability to incorporate a nerdy reference into any situation, the word “fellowship” is the best adjective I can think of to articulate my experiences at this year’s conference.

(Courtesy of Kevin Schaefer)

The conference has always been about community, but this year was particularly special for me. This year, more adults with SMA attended and hung out with one another than at any previous conference. This year, my caregiver Randy and his now fiancé Danielle (they got engaged just after the conference) came with me, giving my parents the freedom to have time to themselves and relax. This year, I spent three nights in a row in the company of other adults with SMA. We laughed together, vented together, listened to each other, and even though many of us just met this past weekend, it feels like we have all known each other for much longer.

I arrived in Dallas with my parents two days before the conference started. Immediately, we were blown away by the sheer size and scope of the hotel. With more than 1,600 rooms, a spacious lobby and downstairs area, and plenty of places to eat, it was the perfect setting for an SMA conference.

Randy and Kevin. (Photo by Cindy Schaefer)

As soon as families started piling in, the hotel became overrun with kids in wheelchairs racing through hallways and giddily bumping into one another. Between this and kids with their able-bodied siblings riding on the backs of their wheelchairs, I thought about how I did these exact same things when I was a child at these conferences.

Now, the thing I look forward to the most at conferences is connecting with people like me who “get it.” When a bunch of adults with SMA are packed in a room together, there is an instant sense of community and acceptance that’s almost surreal. Some of us had wildly different backgrounds, careers, interests, and even physical abilities, but the thing that brought us together was this complex, crazy, beast of a disease called SMA.

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As our group talked with each other during sessions, at meals and in the evenings outside the hotel bar, we conversed like we had known each other for years. We joked about all of the awkward comments we receive as people in wheelchairs, like “You’re a great driver!” and “Good to see you out buddy!” The real kicker came when 20 of us in wheelchairs went outside at the same time. I suggested just ramming through the door in Mad Max-style, but we all agreed that destroying hotel property would be an unwise move. Still, it was fun seeing the reactions of everyone at the bar as 20 people in wheelchairs exited the building in single file trying to hold on to our drinks.

The summer breeze brushed past us as we formed a circle around the outdoor fireplace. Though it was a night of tranquility and fellowship for all of us, I imagine there was at least one onlooker who passed by us and thought we were some kind of wheelchair cult plotting to take over the world. I realize now that this was a missed opportunity for me to raise my robotic arm in the air and shout, “Let us ride into the night with vengeance!”

Kevin at the panel. (Photo by Cindy Schaefer)

On the last day of the conference, I participated in the “It’s a Wonderful Life” panel. This panel features five to seven adults with SMA. In it, we shared our stories and answered questions from people in the audience. I’ve participated in it three times, and it’s one I never get tired of doing. I’m always encouraged by parents of newly diagnosed children who tell me and the other panelists that our stories give them hope for the future. I’m glad, because I introduced myself this time as the assistant to the regional manager at Dunder Mifflin Paper Company, which is a title that all of us should aspire to.

The SMA conference is one of the most special times of the year for me, and I’m grateful for all the amazing people I met this year. Come back next week as I’ll be sharing my thoughts on the research side of the conference, and about what the medical professionals and pharmaceutical company representatives who were present had to say.

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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.