Puzzles are all the rage these days. Since the onset of the COVID-19 pandemic, countless friends on my social media have turned to jigsaw puzzles as a newfound hobby. This particular pastime requires mental focus and time, and as such provides people with a welcome distraction from the…
Embracing My Inner Alien
— Kevin Schaefer
Kevin Schaefer (he/him) is a writer, podcaster, and lover of all things pop culture. Diagnosed with SMA type 2 at the age of 18 months in 1995, he shares a vast array of hilarious and eye-opening stories from his life with a neuromuscular disability. He works as the associate director of community content for this site’s parent company, Bionews. He also hosts the SMA News Today Podcast. Kevin is a graduate of North Carolina State University and lives with his parents in Cary, NC. People regularly mistake him for Tony Stark, on account of his intellect and advanced technological equipment.
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In June, my parents and I huddled into our accessible van to head to the annual Cure SMA conference in Orlando, Florida. It’s always my most anticipated time of the year, filled with seeing friends, meeting new people, and spending late nights at the hotel lounge and by the…
The comedian Brad Williams has a great one-liner about writing jokes. Williams’ observational humor is predominantly rooted in his experiences as a man born with achondroplasia, a type of dwarfism. When describing his writing process in the 2015…
As I entered week six of COVID-19 lockdown, I knew I had a choice to make. I could continue to experience the effects of being unable to go to my aquatic therapy appointments and allow my body to remain stagnant, or I could…
The receptionist at my physical therapy clinic looked up from his computer, meeting my eyes. I could see the lightbulb shine in his brain. “That’s right, I remember your name was Kevin because you look like the guy in ‘Clerks.’” Being a…
Amid the cluster of medical equipment, my childhood bedroom had an even more distinguishable feature: buckets and buckets of plastic action figures. I had everything from six-inch “Star Wars” figurines to characters from the beloved Nickelodeon series “Avatar: The Last Airbender.” I could…
Editor’s note: This column discusses some of the plot of Netflix’s documentary film “Crip Camp.” A new Netflix documentary called “Crip Camp” opens with an eclectic credits sequence set to the tune of “For What it’s Worth…
A blue body cast covered me from my waist down. The pain in my right leg skyrocketed each time I moved. I intentionally tried to avoid going to the bathroom, because I couldn’t endure the misery of transferring out of my bed. Just the sight of my mobile…
Almost every aspect of my life with SMA comes with a risk factor. Whether I’m traveling out of town or going to a movie with friends in the wintertime, I’m putting my already compromised immune and respiratory systems at risk. My health has improved significantly in recent years,…
I spend the majority of my time in my power wheelchair. Other than my weekly water therapy sessions, I’m usually in my chair from when I get up in the morning to when I go to bed at night. My…
The music of Bruce Springsteen, David Bowie, and a bunch of movie soundtracks regularly play in the background of my home office. Thanks to Amazon Alexa technology, I can easily control my music and podcasts with simple voice commands. I always like to listen to…
Feb. 29 is Rare Disease Day. On that day people are encouraged to spread awareness about a multitude of rare diseases and conditions, from SMA to cystic fibrosis to Charcot-Marie-Tooth disease. The umbrella…
On Super Bowl Sunday in 2013, I attended my first meeting at NC State’s student newspaper, Technician. I went on a whim with zero journalism experience. My only hope was to maybe write a few movie reviews for the publication. Little did I…
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