It took three people to complete my retinal scan during my vision appointment the other day. Most people can just prop themselves up against the machine, stare into the camera, and finish in no time. SMA, however, adds a few extra steps to this process. Once…
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…
Every morning when I wake up, I feel like my nose took a beating the night before. Grogginess is one thing, but when you factor in a BiPAP machine, it adds an extra layer of discomfort. As soon as I awake, I can’t…
Within the pages of the Marvel universe, one of the most iconic superhero teams is the “Uncanny X-Men.” There’s Cyclops with his optic blasts of energy, Marvel Girl with her telepathic and telekinetic abilities, Wolverine with his regenerative healing abilities and…
A few months ago, I wrote about my ongoing stomach issues and the impact this was having on my daily life. Despite the subject matter, I somehow managed to maintain a serious tone in the column. Truth be told, I was too frustrated…
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…
“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…
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