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.

 

Lean on Me — Literally

“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,…

That Pesky Pre-Spinraza Injection Fatigue

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…

Managing SMA Is Like an Ongoing Chess Match

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…

SMA Humor Writes Itself

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…

A Tale of Two Kevins

The receptionist at my physical therapy clinic looked up from his computer, meeting my eyes. I could see the lightbulb shine in his brain. “That’s right, I remember your name was Kevin because you look like the guy in ‘Clerks.’”  Being a…

The Truth About My Plastic Obsession

Amid the cluster of medical equipment, my childhood bedroom had an even more distinguishable feature: buckets and buckets of plastic action figures. I had everything from six-inch “Star Wars” figurines to characters from the beloved Nickelodeon series “Avatar: The Last Airbender.” I could…