From Homebody to Road Warrior

I write a lot about defying the odds and being adventurous despite my disability. I’m not keen on being called an inspiration by people who don’t even know me, but nevertheless, I want to subvert the stereotype that every person in a wheelchair just sits at home all day.

Well, we do sit. But we do other things, too.

Recently, though, it dawned on me just how far I have come in my independence. Last Saturday, I went on a road trip with just friends, which is a feat I never would have even dreamed of doing a few years ago. While my teenaged self would not be surprised in the least to learn that I spent the previous night reading the award-winning comic book series “Mister Miracle” in its entirety, that same nerd would have thought that a trip without Mom and Dad would be impossible.

I went on my first vacation without my parents when I was 22, and since then, I’ve gone on many adventures with friends in my archaic Dodge Caravan. Before that, an endless amount of questions created a mental barrier in my head.

Would it be safe? What if something happens? What if there’s an emergency? What if I forget to bring something? How will I convince Mom and Dad to let me do this?

All of those anxieties kept me from taking this step for years. Though I had gone on countless vacations and retreats, at least one of my parents always accompanied me. I felt left behind as a result of being unable to simply escape for a weekend with my friends without having to worry about the logistics of it all.

From left, Kenny, Young, Holden, Katie, and Della. I’m in the center. (Courtesy of Kevin Schaefer)

Now here I am, a veteran when it comes to going out of town with friends. For this trip, I tapped my friend Kenny (far-left in the picture above) to drive me. He and I met through a campus ministry in college. He’s currently helping me out on the weekends while in his last semester of school. Since he’s a fellow nerd, I pay him in cash, comic books, and movie passes.

We went to meet some friends of mine in Winston-Salem, North Carolina, about two hours from where I live. Being the rebellious party animals that we are, we met at a movie theater to see “How to Train Your Dragon 3.” And no, the kids who were in the audience did not have the same appreciation and enthusiasm for the film that we did, given that they were barely alive in 2010 when the first installment came out.

Later that night when we all went out for dinner, I couldn’t help but let my mind descend into a pool of sentimentality. I’m not even sure if that expression works, but I’m going to roll with it.

For one, we had dinner at The Loop, which is a pizza and grill place that both of my siblings worked at when they were in high school. Our town’s location closed a few years ago, but just going to the one in Winston struck me with an overwhelming sense of nostalgia.

Second, the friends I met with each have played a pivotal role in my life. Katie, Holden, and Young were some of the first people I met when I started working for the school newspaper in my freshman year of college. Young actually now is a columnist here at Bionews Services for Charcot-Marie-Tooth News. At Katie and Holden’s wedding this past summer, I met Della. The two of us killed it on the dance floor.

All of these things culminated into an adventure that was once only fantasy in my mind. I used to allow SMA to dictate my actions and prevent me from experiencing the wonders of life. For the longest time, my physical limitations crushed me mentally. I let it happen.

Yet with each step I’ve taken toward more independence, I’ve come to realize just how much I can do. I can work and provide for myself, manage my care team, get stronger at physical therapy every week, and experience the liberating sensation of riding down the highway with friends on a sunny afternoon.

And hey, if the worst thing that ever happened on a trip without Mom and Dad was my friends accidentally skidding our van along a cement pillar in the middle of a hotel parking deck and scratching the side door, I’ll take it.

Have you been on road trips with friends? Join the discussion in the SMA News Today forums.

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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.