Full disclosure: Although I was an English major in college, I didn’t read all the books I was supposed to. Oops. As I think back to my days as a student, I was so focused on the idea of getting the grades I needed to…
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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Like many pop culture enthusiasts, I currently devote my Thursday nights to the HBO Max series “The Pitt.” Hailed as the most realistic medical drama on TV, the show follows an emergency department crew in a Pittsburgh hospital, led by veteran physician Michael “Robby” Robinavitch (played by Noah…
“Pack my suitcase?” That famous quote from “Home Alone” coincides with a shellshocked expression on Kevin’s face. For a character who has no concept of independence at the start of the movie, packing his own luggage for a family vacation seems…
July is recognized as Disability Pride Month, as it coincides with the anniversary of the signing of the Americans with Disabilities Act of 1990. Whereas this law secures basic rights for those of us with disabilities, disability pride is a phrase that encourages…
“I want to know, can you show me/ I want to know about the strangers like me.” These lyrics from Phil Collins’ “Strangers Like Me” play during an iconic scene from Disney’s “Tarzan.” As Tarzan and Jane swing through the jungle,…
What follows is possibly the most difficult column I’ve ever written. Since 2020 has a recurring theme of being a never-ending dumpster fire for everyone, I suppose this bit of news was inevitable. A week ago, my family and I said goodbye to my service dog,…
I was supposed to be in Disney World right now. I was planning on a week in the happiest place on Earth with some of my favorite people, followed by a comic convention back home. My summers tend to be full of travel and adventures, and this one…
“I can’t carry it for you, but I can carry you!” Samwise Gamgee shouts in “The Lord of the Rings,” as he carries Frodo up Mount Doom to destroy the ring of power. It’s an iconic tear-jerker movie moment,…
As I lay sideways on the operating table for my most recent Spinraza injection, my neurologist asked me about an upcoming SMA therapy. He and I like to make small talk about medical breakthroughs while a radiologist jams a needle into my neck. We were discussing…
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…
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…
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