I have fond memories of rolling down the sidewalk with my father in our local downtown and reaching the Blockbuster video store. This was like the candy store of my childhood; I was filled with the excitement and anticipation of searching for a new movie to watch. For me, films have always been a momentary escape from the clutches of Duchenne muscular dystrophy (DMD).
The other night I watched Dirty Dancing with my parents. We cracked jokes at some of the dated storylines. It’s a nightly routine for us to view a movie or television show together. I find this as a way to ensure that I will have something to look forward to most days because with DMD there certainly can be a hard balance between having a good time and near calamity.
I mentioned how TV can have the same calming effect as a movie to me. One instance I recall well is when the COVID pandemic was in full force in its early days. I was feeling a mix of cabin fever from being trapped indoors and a sense of real fear that this could actually be the end of my life, with the respiratory issues I have already.
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However, there was a savior in those trying times in the form of the reality dating series called Love Is Blind. Seeing the often ridiculous scenarios play out between the contestants gave us a much-needed respite from the uncertainty around us.
Read about experimental therapies for DMD
Another time when movies came to my rescue was when I had spinal fusion surgery in 2005. Since I was spending every waking hour in the hospital room—a boring prospect for an 11-year-old—the films available for families were a welcome detour. I can vividly remember seeing titles such as Shrek 2, The Sandlot, and Lemony Snicket’s A Series of Unfortunate Events.
I’m also a fan of the horror genre, including creatures, ghosts, witches, and slashers. I have a theory as to why scary movies are a thrill rather than a chill for me. Sometimes I personify the specter of DMD as my real-life monster. There are multiple occurrences where I’ve vanquished this foe. So when I see monsters of the make-believe variety on the screen, I’m not as frightened, knowing that I’ve already survived true terrors.
Similar to the video store, another place that evokes positive nostalgia in me is the movie theater. I’ve had some of my best social interactions in this setting. Sitting there with just my friends gives me a tinge of freedom, as I don’t require the presence of a caregiver. It has also of course been like a hideout from the difficulties I face in the outside world. Once I went to the theater with a broken arm, and I still experienced this escapism.
Movies have had the ability to captivate me with their relatable themes. The dilemmas that a disabled person can endure is one of those struggles I emphasize with. That’s why I was glad to see the film CODA awarded the Oscar for Best Picture this year, since it featured characters played by actors who are legitimately deaf.
Though still somewhat rare, I have even more of a connection with cinema when there is someone with a neuromuscular disease like mine involved. I had the pleasure of interviewing an actress/comedian named Shannon DeVido, who has spinal muscular atrophy (SMA). She has made appearances in a few television series, but I probably enjoyed a musical she starred in titled Best Summer Ever the most. What impressed me was that there wasn’t a single mention of her disability, which is often the only thing that is given the spotlight in movies.
There is a Netflix movie from 2016 called The Fundamentals of Caring, where the main character has DMD. I found the portrayal of the disease to be fairly realistic, especially when a breathing device like my BiPap is shown. There is also a mention of a steroid medication commonly prescribed for DMD. A pretty humorous scene takes place where the protagonist’s power chair is lifted up and down stairs, reminding me of how I so often have to be resourceful.
Movies will always be a haven for me to cope with what can be a precarious reality. Though the film reel might hide what is real, its benefits remain priceless in my mind.
