I turn 25 in a few days, which for me is a pretty substantial accomplishment. After four broken legs, two major surgeries, multiple run-ins with pneumonia, a couple of pills shoved up my butt, and far too many catheters, I’ve managed to carry on. I figure that if Peyton Westlake in the movie “Darkman” can survive a horrific lab explosion and return to fight crime as a disfigured vigilante, I can take whatever life with SMA has in store for me.
Last week I shared some memories and life lessons from one of my former editors. This week, I’m going to share some of my own advice now that I’m another year wiser. Given that I’m currently surrounded by action figures and listening to a playlist of superhero theme songs, feel free to take these words with a grain of salt.
When you have a lifelong disability, it’s easy to think about all of the things you can’t do. As someone with SMA, I know it’s not practical for me to become an NFL player, police officer, fireman, Chris Hemsworth stunt double, ninja assassin, or the leader of an outlaw biker gang. Yet just because I can’t master jiujitsu and silence my enemies with a katana, there are still plenty of other things I can do.
In high school, I dreamed about becoming as big a nerd icon as J.J. Abrams by the time I was in my mid-20s. Obviously, that hasn’t happened, but my naivety propelled me to start writing early and work toward my goals. I spent many nights in high school and college just working on my own projects. Now at 25, I can say that I’ve acted, written short stories and comic book scripts, made short films, hosted dozens of podcasts and comic con panels, and even done some stand-up comedy. All of those things started with just me dreaming and wanting to share my stuff with other people.
Be Samwise Gamgee when you’re wandering through Mordor
In layman terms, put a positive spin on things when everything sucks. This mentality has served me well over the years. If I get frustrated by not being able to do something, or I’m just having a bad day, I remember that I have a cool caregiver who will make wildly irreverent jokes while he sets up my catheter. If I get sick or break my leg, I think about how many of my female friends will visit me in the hospital and buy me ice cream. Or if I experience anxiety about being single at my age when many of my friends and family members are married, I remember that I have the freedom to spend boatloads of money on comic books and good food.
If Sam can manage to deliver an epic motivational monologue in “The Lord of the Rings: The Two Towers” while he and Frodo are up against the armies of Sauron, then you can probably find it in yourself to face whatever challenges stand in your way in your day-to-day life.
Life is hard. Life with SMA is even harder. If you or someone in your family has this disease, self-care is extremely important. Even if you aren’t directly affected by SMA, this tidbit of advice applies to anyone. The only way you can reach your potential is if you take care of yourself mentally, physically, emotionally, and spiritually.
When I find myself stressed or depressed, I take a break from whatever I’m doing to do something I enjoy. I take my dog for a walk, read, go out with a friend, see a movie or go hang out at the comic shop. Most recently I downloaded the new DC Universe app, which allows me to spend way too much time streaming cartoons and digital comic books. “Treat yo’self” is more than just a popular catchphrase used on “Parks and Recreation.” It’s a reminder to take care of yourself so that you can help others. Never underestimate the wisdom of Tom Haverford.
As I’ve said many times, I have a great life. It’s far from perfect, and there are times when I feel too overwhelmed, but I push through. Take it from a guy who wasn’t exactly given a long life expectancy, life is full of surprises. Embrace every moment of it.
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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