There’s no denying that SMA can be brutal, taking more than just physical ability from those it afflicts. It can be a burden mentally, emotionally, and financially, as this recent study noted.
However, if you have read my columns for a while, you know how firmly I believe that a high quality of life is very much a possibility with or without SMA. For some people, it’s harder than for others, especially when serious mental health issues like anxiety and depression come into play. Finding the good in things when you live with something like SMA is no easy feat, but the following are some things that have helped me live a fantastic life.
My dad in particular always instilled in me the importance of pursuing the things that I’m passionate about, and for that, I’ll always be grateful. He can talk anyone’s ears out with his encyclopedic knowledge of sports culture, MLB trivia, journalism, and American history, among other subjects. Me, I can spit out facts about American cinema, comic books, ’90s cartoons, “Star Wars,” the Marvel Cinematic Universe, and most other facets of pop culture. Just as my dad’s passions led him to do sports journalism during and after college, my status as an arts and entertainment guru has been an instrumental part of my career.
That said, here are a few of my passions and how they have helped me have a great quality of life.
Oddly enough, I can’t remember the first movie I ever saw, either in theaters or at home on this ancient device called a VHS player. I just know that I’ve always loved movies. I love watching them, talking about them, writing about them, and writing story ideas and scripts of my own.
As a kid, I was obsessed with all the usual suspects like “Star Wars,” Pixar, “Lord of the Rings,” and the early superhero films like Sam Raimi’s “Spider-Man” and Tim Burton’s “Batman” (all of which I’m still obsessed with today). Once I got to college and studied English with a film studies concentration, I watched everything from noir classics to foreign documentaries to cult dramas. These days, I like to seek out retro horror and sci-fi, ’80s comedies, good and bad big-budget blockbusters, and anything with Ron Perlman. I make weekly visits to the movies, my favorite theater being the Alamo Drafthouse Cinema in Raleigh, North Carolina.
To steal a line from “Inception” about world-building and the power of the human imagination: Movies give me the ability to “build cathedrals, entire cities — things that have never existed, things that couldn’t exist in the real world. …” Film can be used to educate, inspire, entertain, challenge, and open my mind to all kinds of possibilities.
I ventured into the world of podcasting about three years ago. After meeting my friends Jordan and Rich through NC State University’s student newspaper, they invited me to come on their pop culture podcast, “The Joy of Geek.” Two recording sessions later, they brought me on as a regular co-host. Every week, we talk about the movies and TV shows we’re watching, and the comics and books we’re reading. We also speculate on the entertainment world’s news and review the latest blockbuster movies. I continue to do “The Joy of Geek” as well as the SMA News Today Podcast, in which I interview various people in the SMA community.
What I like about podcasting is that it’s so easily accessible by anyone, especially people with SMA. If you have an idea for a podcast, all you need is a computer, a good mic, and a platform like SoundCloud or iTunes to put it on. It requires very little physical ability. Some friends and I even did a panel at NC Comicon: Oak City this year about starting your own podcast, which you can listen to here.
Comics and books
According to Goodreads, I’ve read 42 trade paperbacks, graphic novels, and books this year alone. In comic book terminology, a trade paperback is a collection of previously published single issues, while a graphic novel is an original story not previously released in single issues (like the Scott Pilgrim books or “Persepolis“). Much like watching movies, reading does many things for me. Comics and books have the ability to entertain, educate, inspire, and challenge me to exercise my imagination in ways I never thought possible.
Also, if you are one of those people who think comics aren’t real books, oh, how naive you are.
I don’t just read comics, though. I love memoirs, novels, books about writing, plays and screenplays, and books about people with disabilities. Books activate my mind and help keep me going.
These are just a few of my passions, and ultimately, my faith is what sustains me. On days when the weight of having SMA overwhelms me, I find solace in the things I love, and in the people I love. Living with SMA can seem like too much at times, but that doesn’t mean it has to keep us from living.
Which passions boost your quality of life? Visit the SMA News Today forums to discuss.
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.