A Cure SMA Travel Adventure That Starts With a Bump in the Road

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by Kevin Schaefer |

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As I write this, I’m sitting in the lobby of a Las Vegas hotel. This morning, I awoke to breathtaking views of giant Utah canyons, where rock formations spewed from the earth in spectacular fashion. Just a few days ago, my parents and I were eating at a Memphis barbecue joint with one of my best friends.

Alas, my parents and I are on the ride of a lifetime — literally. Though we are no strangers to road trips, this one marks the longest stretch we’ve ever embarked upon. We left on a Saturday from our home in Cary, North Carolina, and are headed to Anaheim, California, for the annual Cure SMA conference. That’s an estimated 2,529 miles — one way. Some may call us crazy, but I prefer the term adventurous.

Cure SMA | SMA News Today | A daytime shot from behind Kevin as he sits in his power wheelchair overlooking the majestic Bryce Canyon in Utah

Kevin admires the majestic views offered by Bryce Canyon National Park in Utah, on his way to the 2022 Annual SMA Conference in California. (Courtesy of Kevin Schaefer)

The origins of this trip date back to 2019, the last time the Cure SMA conference was held in person in the pre-pandemic days. Faithful readers of my column will recall that my previous attempt at flying resulted in catastrophe. I returned home that year with my power wheelchair severely damaged, and I resolved to forgo air travel for the foreseeable future. Then came the pandemic, and all travel was out the window for a while.

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By the time Cure SMA organizers announced that this year’s conference would resume in person in Anaheim, my family and I were ready to leave the safety and solitude of the Shire. (The street I live on is called Wilshire, so I can make Tolkien references whenever I want.) We were willing to make the long journey and face whatever obstacles awaited us.

After months of work by my mom to plan each stop and make hotel reservations well in advance, we packed our van and pulled out of our driveway at the crack of dawn. Our first stop was in Nashville, where we would meet with an SMA family we’ve been friends with for several years.

Cure SMA | SMA News Today | Kevin and his friend Luisa outside a barbecue joint in Memphis.

Ahead of a 2,500-mile road trip, Kevin stops for barbecue in Memphis with his friend Luisa. (Courtesy of Kevin Schaefer)

Not quite unexpectedly, we encountered an obstacle on day one. As we checked into our hotel, the right finger on my JACO robotic arm came loose and fell to the side, lopsided. As it dangled in the air, rendering the arm useless for most of its functions, my parents and I sat there in disbelief. Though we had just gotten the arm evaluated and fixed before leaving, this scenario felt like the universe was taunting us.

In that moment, I wanted to simultaneously scream and sob. I saw the frustration in my parents’ eyes and recognized that this was just the first day of a three-week journey. I wondered if it was even worth it. Having a technical issue with one of my mobility devices at home is manageable, but encountering this in the midst of a cross-country escapade is something else.

However, the fact that we were traveling to multiple states actually worked to our advantage in this situation. We spoke via FaceTime with my contact from the medical distributor Partners in Medicine, who then reached out to my friend Abe, the guy who installed my JACO arm back in 2015. Funnily enough, Abe lives in the Oklahoma town where we stayed on night two. Though he no longer works for the company that manufactures these devices, he has a heart of gold and came to the rescue. Within minutes of meeting with us, he had my arm fully functional.

Cure SMA | SMA News Today | Kevin and his parents, Cindy and Glenn, pose for a photo outside a brick building in a downtown area of a town in Oklahoma

Kevin and his parents, Cindy and Glenn Schaefer, stop in Oklahoma on their way to Anaheim, California, for the 2022 Annual SMA Conference. (Courtesy of Kevin Schaefer)

I also can’t put words to this adventure without spotlighting the other real heroes: my mom and dad. Without their resiliency, resourcefulness, and willingness to adapt, none of this would be possible. It’s no easy task to go from one hotel to the next while hauling my equipment and maneuvering around environments that are vastly different from our setup at home. Yet somehow, we Griswolds make it work.

Now, it’s on to Anaheim for the Cure SMA conference. I’ll be on two panels this year, and I can’t wait to reunite with the rest of my ragtag SMA crew. Though I’ve already seen and done extraordinary things, I know this adventure is just beginning.

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.

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