When I began my journey with Spinraza (nusinersen) in November 2017, I had little more than an inkling about what to expect. At the time, I was more concerned with the procedure than the potential benefits. The idea of letting a radiologist stick…
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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My late friend and colleague Michael Morale liked to utter a phrase to me whenever I had an aquatic therapy session: “Get strong.” Michael spoke with a thick Texan accent and the utmost sincerity as he emphasized those words. He fully believed that…
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…
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…
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