“LET ME KNOW IF YOU NEED ANYTHING!” An usher exclaimed these words at the top of his lungs in the church auditorium while putting his hand on my shoulder. To say this experience was patronizing would be an understatement, but it did provide the catalyst for the perfect rebuttal. Upon…
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…
This year marked the second entirely virtual annual Cure SMA conference. Instead of armies of wheelchair users invading Disneyland and hotels, we fellowshipped through virtual trivia nights and Zoom socials. While I yearn to be back in person with my fellow SMA peeps,…
“It’s a dangerous business, Frodo, going out of your door. … You step into the Road, and if you don’t keep your feet, there is no knowing where you might be swept off to.” By now, my readers and editors are probably rolling their eyes at the absurd number of…
One of my favorite films is “Rushmore,” a coming-of-age comedy from one of cinema’s most imaginative directors, Wes Anderson. “Rushmore” tells the story of quirky teenager Max Fischer, an ambitious playwright who prioritizes everything but his academics. He joins every…
My life is a sitcom. Recently, I was chatting with my friend Young, a columnist for Charcot-Marie-Tooth News, about our writing processes. He was rather amazed when I told him that I rarely plan column topics. In my life, it’s never…
Peter Jackson, the New Zealand filmmaker who spearheaded “The Lord of the Rings” trilogy and the 2005 remake of “King Kong,” is known for being a bit of a maverick. Even after acquiring commercial and critical success for…
My dad and I both heard the perfunctory snap as the right armrest on my power wheelchair lowered. I was about to get ready for bed on a Friday night, and my dad had just transferred me from my bathroom seat to my chair. As he lowered the…
“Chewie, we’re home.” Just as Han Solo uttered these words when he stepped aboard the Millennium Falcon in “The Force Awakens,” I felt a similar tinge of nostalgia and excitement upon returning to my favorite movie theater after an entire year.
On March 18, the gargantuan blockbuster of a superhero movie known as “Zack Snyder’s Justice League” arrived on HBO Max. With its multiple storylines, ensemble of main characters, staggering four-hour run time, and history of controversies and triumphs,…
In college, my sanctuary was the room where the majority of my classes took place. Tucked away in a secluded corner of the humanities building, the film room was akin to a small auditorium. In the center was a large screen that my professors used to showcase all…
You know it’s a unique relationship when one friend helps the other use the bathroom. This is the scenario I found myself in a couple weeks ago when my longtime friend Lucas held my urinal for me inside the bathroom of our go-to comic shop. While I normally…
I looked at the faces on my computer screen and saw just a snippet of the SMA community. People from different locations, different cultural backgrounds, and with different types of SMA were gathered for a Cure SMA virtual book club, which I had…
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