Embracing My Inner Alien - a column by Kevin Schaefer

wheelchair malfunction, movie theaterKevin is a writer, podcaster, and lover of all things pop-culture. Diagnosed with SMA Type 2 at the age of 18 months, he shares a vast array of hilarious and eye-opening stories from his life with a neuromuscular disability. In addition to his weekly columns, he works as the Director of Forums for this site’s parent company, BioNews. 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.

 

Sleeping problems are another part of the SMA package

The 2021 Netflix movie “Awake” imagines a world in which a mysterious catastrophe wipes out all electronics and takes away humanity’s ability to sleep. Mass hysteria ensues within hours of this apocalyptic event, as people long to let their minds and bodies rest. Citizens turn against one another,…

Teacup Rides and Wheelchair-spinning, Oh My!

When I was younger, I enjoyed the hyperactive nature of the teacup ride at Disney World. My mom hated it, but my dad was willing to accompany my siblings and me on this headache-inducing extravaganza. Spinning around inside a giant teacup from “Alice in Wonderland” was enough to entertain a…

What if I Could Take a Vacation From SMA?

“Yesterday, All my troubles seemed so far away, Now it looks as though they’re here to stay, Oh, I believe in yesterday.” Among the countless hits by the Beatles, “Yesterday,” released in 1965, has stood the test of time as one of the most revered and influential songs in history.

How SMA Has Affected My Perspective on Aging

“Your 60s you’ll have a major surgery, the music is still loud but it doesn’t matter because you can’t hear it anyway. Seventies, you and the wife retire to Fort Lauderdale, you start eating dinner at 2 o’clock in the afternoon, you have lunch around 10, breakfast the night before.”…

SMA Episode V: The Pneumonia Strikes Back

“Pneumonia! It’s been a few years. How’ve you been? Sorry to be blunt, but I’d rather you not stick around for too long since you’re a real pain in the butt.” Fortunately, my most recent encounter with my old acquaintance was relatively brief. I spent one night at the hospital…

Spending Time Alone Is Part of Living With SMA

The other day, I had my annual evaluation with a nurse to make sure I’m still disabled. This is one of the things that those of us who use government services for caregivers just have to do. It’s no secret that having a disability is a full-time occupation. Fortunately,…