A Long Time Ago …

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by Kevin Schaefer |

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brother, heroes and characters, techniques

Kevin Embracing my inner alien

I was maybe 4 or 5 years old the first time I saw the original “Star Wars” trilogy. It was a VHS set, and I still remember the old-fashioned covers that featured characters like Yoda and Darth Vader. For those of you ultra-millennials out there, VHS tapes are how we used to watch movies before the arrival of DVDs, Blu-rays and streaming services.

From the moment that tape entered the VHS player and the first “Star Wars” film appeared on the screen, I was captivated. Here was a world of heroes, villains, light sabers, starships, and limitless imagination. The Star Wars universe means something different to every nerd out there, but for me it has never been just a series of movies. For me, Star Wars is a gateway to another world, a spiritual portal that redefines the term “escapism.”

Life with SMA can get pretty rough sometimes, and there have been times in my life when escapism was the only way I could maintain my sanity. If I found myself stuck in a hospital or bedridden at home for weeks on end, I knew I could pass the time going on adventures with Luke Skywalker and company. The world as we know it is big, but only to an extent. It’s our imaginations that allow us to travel outside the constraints of reality.

Yet beyond the fantastical elements associated with movies and comic books, I’m also drawn to their humanistic qualities. Characters like Luke, Rey, Spider-Man, Daredevil, and even Superman are all tremendous outsiders who must rise above insurmountable obstacles in their stories.

To me, the most fascinating element of a superhero’s origin story is how each character reacts to having powers. Some, like Spider-Man, fully embrace their unique abilities and often use them to get into all kinds of mischief. Others, like Cyborg, see themselves as cursed and their journeys are all about them learning to accept their abnormalities so that they can become heroes.

As someone born with a rare neuromuscular condition, I find these characters and situations extremely relatable. There are times when SMA absolutely feels like a curse and I can’t fathom why God would choose me or anyone else to have it. Yet, as I’ve grown older and observed the emotional and intellectual abilities I’ve gained as a result of my SMA, I’ve come to accept it as a part of my identity. When I look at any hero’s journey in film and literature, the idea of embracing one’s inner alien is apparent in everything from Star Wars to DC and Marvel comics to my own life.

All of this is a long way of saying that Star Wars sparked my fascination with the abnormal and otherworldly. Seeing “A New Hope” for the first time led me to becoming a film buff, a science fiction geek and, ultimately, a storyteller. When I was first diagnosed with SMA, my parents were told everything that I would never be able to do. Star Wars taught me about the endless possibilities that came with using my imagination, which is a lesson I never let go.

That simple mentality has enabled me to write, act, produce podcasts, make short films, review movies and comics, and connect with a bunch of other geeks like me. My disability has also played a major role in my creative journey. If it weren’t for my SMA, I wouldn’t have the unique perspective that has allowed me to weave together my disability with my writing.

So as I head to the theater this week (and in the coming weeks) for multiple screenings of “Star Wars Episode VIII: The Last Jedi,” I’ll always be grateful for the spark of creativity that the franchise instilled in me all those years ago.


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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