On Tuesday, April 2, I embarked on a noble quest. At one point, I thought I would need to summon the power of all six infinity stones to accomplish my goal.
My mission was to obtain two tickets for the opening night of “Avengers: Endgame,” and I was successful. As soon as I received the email confirmation, I texted one of my best friends, Will, to let him know that we were good to go. While many other people in my age group are getting married, having kids, and moving to new cities, I’m just ecstatic to know that I’ll be in my favorite movie theater in a few weeks, watching the epic conclusion of the Thanos saga play out.
Now, some people may laugh at the notion that seeing the next big superhero movie on opening night is the thing I’m most excited about right now, but consider it from my perspective. Like most people, I have an innate desire for escapism and adventure. As someone with SMA, I would say that I crave these things a little more than the average person. Many of us with disabilities have an intense passion for various forms of storytelling, as the movies and books we consume provide us with respite from the physical struggles, fatigue, and accessibility issues that we face on a daily basis.
Though I believe that people with disabilities are capable of experiencing life just like everyone else, I also recognize that some things are outside of our reach. As such, I’ve learned to develop alternative solutions to the things that SMA prevents me from doing.
I’ve written about my love of travel many times in the past; I enjoy taking trips around the country, especially if it involves comic cons or Disney World. Though traveling as a person with SMA has resulted in plenty of chaotic experiences. And even when things do go smoothly, I still have to plan months in advance for an out-of-state trip to make sure that a caregiver can accompany me, and that I have an accessible hotel room. That said, the idea of international travel is a little headache-inducing.
Yet while out-of-state and international vacations do present multiple obstacles for me, I can take shorter road trips with little to no difficulty. Whether it’s a day trip with friends to a different part of North Carolina or an out-of-town comic con, I get a huge thrill out of these mini-adventures.
Movies, books, and other media
When I was in fifth grade, I was unable to attend my class field trip because of how inaccessible it was. The trip consisted of camping, fishing, and other outdoor activities in an area that I was unable to navigate.
As an alternative, my mom took me shopping for action figures and to see “Star Wars Episode III: Revenge of the Sith” on opening weekend. While all of my friends were having fun outdoors, I was fully content watching a vengeful Anakin Skywalker whack a bunch of Jedi kids and give birth to the galactic empire. Movies, books, music, comedy, and TV shows compensate for many of the things I’m unable to do physically. My muscles may not function properly, but my imagination works perfectly well.
It took me a while to realize this, but my inability to drive a car is actually a blessing in disguise. Since I’m unable to hop in a vehicle and drive myself to wherever I want to go, I rely on friends and family to give me rides. This may seem like a hindrance, but it’s resulted in many memorable trips to movie theaters, restaurants, bars, comic cons, college events, friends’ apartments, and parties.
I’ve lost count of how many friends have driven me in my archaic minivan since I was in college, and a unique kind of bonding occurs on these car rides. Whether it’s someone driving me for a day trip, or just taking me to a physical therapy appointment, I like to have quality conversations with whoever’s chauffeuring me. Car rides have resulted in discussions about life, dreams, spirituality, cartoons, comic books, fart jokes, the DC cinematic universe, and many other important topics. These discussions would never have been possible if I could drive myself.
Living with SMA presents me with plenty of challenges and obstacles, but for the most part, I’m able to utilize my resources and find alternative solutions to the things I can’t do. Granted, I have yet to figure out a way to modify my wheelchair to function like a Batmobile and use it to go spelunking. I guess I’ll have to wait and see what the future holds for this kind of technology.
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.
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