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,…
Embracing My Inner Alien - a column by Kevin Schaefer
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…
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,…
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…
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…
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…
As I entered week six of COVID-19 lockdown, I knew I had a choice to make. I could continue to experience the effects of being unable to go to my aquatic therapy appointments and allow my body to remain stagnant, or I could…
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…
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…
Recent Posts
- Looking forward to the new year with more confidence than ever
- Motor unit changes track with SMA severity, new study shows
- SMA community honors legacy of disability rights activist Alice Wong
- Teamwork and faith helped my parents raise children with SMA
- SMA treatment Evrysdi shows multiple benefits for adults
