How a long-distance adventure helped me handle losses from SMA

Traveling to a concert three and a half hours away requires planning, which is all the more true when my disability enters the equation. Between securing transportation, finding an accessible hotel room, and making sure the venue is accessible, some might deem a trip like this one not worth the effort. And yet I’m crazy enough to embrace my adventurous spirit.

Back in November, I spontaneously bought tickets for a Maya Hawke concert in Washington, D.C. I knew the logistics it’d take to get there, and I also knew the show would sell out quickly. Regret would’ve presented itself if I hadn’t acted fast.

Initially, my plan was to travel with one friend and stay there with another. I solved the second part of my plan: My pal Tré LaRosa, who used to work with me and wrote an excellent series of columns about his life with cystic fibrosis, moved to the D.C. area a couple of years ago, and his apartment is wheelchair-accessible. I hoped that all of the other pieces of the plan would fall into place, too.

Alas, I was only a few weeks away from the concert and still hadn’t found a friend who was available to take me. I anxiously wondered if I was going to make this trip work.

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October 13, 2020 Columns by Kevin Schaefer

A Spontaneous Adventure

Thankfully, Mom came to the rescue. She knew how much I wanted to go and how I tried to coordinate everything myself. My striving for independence often conflicts with recognizing my limitations, and I have to regularly remind myself that it’s OK to ask for help. Mom offered to drive me, so long as she didn’t have to go to the concert. I said no problem, and she booked a hotel for us.

Just like that, the trip was all set. Mom and I headed out on a sunny Wednesday morning in the middle of March. I played Maya’s music in the car, eagerly anticipating hearing it live in just a few hours.

What I didn’t realize was how much I needed this adventure to heal and reset. My colleague Helen Baldwin wrote about how the SMA community has endured tremendous losses in recent months. Friends I just saw in person last summer are no longer here with us. That’s especially difficult to process when messages about these losses become just another part of my routine.

I wish I didn’t consider grief a close companion, but that’s the reality. Courtney, Noah, Melissa, Steve, Kimberly, Lance, and Brent are just a few people who have left this corner of the universe, though their spirits remain. And I won’t lie, the fear of learning who might be next often lingers in the back of my mind.

But on that Wednesday morning, I surrendered to the flow and tranquility of everything around me. I watched the sunshine on the open road, ate a steak at Cracker Barrel, and gazed at the historical landmarks as my mom and I arrived in D.C. At the hotel, I met an occupational therapist from Florida who was traveling with her family. We discussed careers, disability, inclusion, and the nature of human interactions.

From there, Tré and I met, and we both acknowledged the surreal nature of our encounter: Though we’ve known each other for years and have had in-depth phone conversations about life, relationships, and creativity, this was our first time meeting in person. As soon as he entered the hotel lobby, we each said to the other, “Bro.”

Tré and I get ready to see Maya. (Courtesy of Kevin Schaefer)

The concert itself was a soul-nourishing experience that will stay with me. Between the calming effect of Maya’s songs, the delightful quirkiness of her personality and stage presence, and the organic connection between her and the audience, it went beyond just listening to music I enjoy. I felt so replenished emotionally and mentally that I wrote 15 pages of a play that weekend.

Living with SMA is filled with a constant stream of ups and downs. Sometimes, embracing the spontaneous and adventurous side is necessary to offset the stress and struggles. Shoutout to Mom for making this particular adventure possible.

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.