“You just gotta keep livin’, man. L-I-V-I-N.” Matthew McConaughey first delivered his iconic “Alright, alright, alright” catchphrase in the 1993 cult classic “Dazed and Confused.” Still, it’s his character’s other most quotable line in the film that is perhaps more poignant and philosophical. When McConaughey’s David Wooderson, 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 her anthology “Disability Visibility: First-Person Stories from the Twenty-first Century,” the late activist and writer Alice Wong offers profound insight into the power of storytelling. She says in one of her essays, “Storytelling can be more than a blog post, essay, or book. It can be an…
As I write this, I’m sitting in the lobby of a Las Vegas hotel. This morning, I awoke to breathtaking views of giant Utah canyons, where rock formations spewed from the earth in spectacular fashion. Just a few days ago, my parents and I were eating at a Memphis barbecue…
A few days ago, I received my 17th injection of Spinraza (nusinersen), one of several SMA treatments approved by the U.S. Food and Drug Administration. Every four months, I go to the hospital for a maintenance dose administered via a cervical injection. When I started this process…
I correspond with a number of friends and acquaintances in the SMA community on a regular basis, but mostly through social media and work. However, there is one friend I met at a conference in 2017 who is a bit of a maverick. Mike has no social media presence…
I was at a friend’s wedding a few months ago when I pondered the question of how to properly introduce myself. Typically, I give the spiel that the company I work for is a network of rare disease websites, and my job involves overseeing online communities and writing and…
I was about to wrap up my freshman year of college when I found myself absorbed in a whirlwind of emotions. Tubes surrounded me as I sat in my room attached to my Vest Airway Clearance System, a device I’d been using since my sophomore year of high school.
A friend and I were sitting in a dimly lit movie theater a few years ago when two guys in their 20s approached me. I couldn’t tell initially if I knew them, but after a closer look, I realized that neither was an acquaintance of mine. They each bore somber,…
The Netflix series “Special” opens with its main character, Ryan, getting hit by a car and thrown into an existential crisis. The accident forces Ryan, a disabled gay man who has multiple insecurities, to evaluate his identity and pushes him to reinvent himself over the course of the first…
“Hello, Peter. What’s happening? Umm, I’m gonna need you to go ahead and come in tomorrow. So, if you could be here around 9 that would be great. Mmkay? Oh, oh, and I almost forgot, ahh, I’m also gonna need you to go ahead and come in on Sunday, too,…
Here in North Carolina, the weather fluctuates between springtime warmth on Christmas Day to freeze-your-butt-off cold a couple days later. We sometimes get all four seasons in the span of a few weeks, but it’s the wintertime that requires the most preparation. It forces people like…
In 2021, I kept a log of every new movie, TV show, book, and comic I watched and read throughout the year, as well as notable music and podcasts I listened to. This media diary allowed me to reflect on the various pieces of art and entertainment I consumed,…
In the new Netflix original movie, “Tick, Tick…Boom!,” Andrew Garfield plays the late playwright and composer Jonathan Larson, whose most famous work is the Broadway musical sensation “Rent.” The film is based on Larson’s autobiographical musical of the same name. It’s a story of an…
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