Author Archives: Kevin Schaefer

On a recent episode of my favorite podcast, “Beautiful Stories From Anonymous People,” host Chris Gethard spoke with an occupational therapist (OT). When this caller discussed her profession, she asked Gethard if he had any experience with her field as a patient. Admittedly, he knew little about it…

In the documentary “Still: A Michael J. Fox Movie,” the famed actor recounts how he hid his Parkinson’s disease for several years after his diagnosis. Even as his symptoms became noticeable, Fox wanted nothing more than to suppress that part of him and retain…

In “The Lord of the Rings,” Sam and Frodo travel through rocky terrains and the murkiest of marshes on the road to Mordor. By the time they finally reach their destination, the hobbits are drenched in blood, bruises, and tears from the hardships of their journey. Contrary to the…

My life often echoes the absurdity of a Monty Python sketch. When my primary care physician called me on a Friday night in early May, I wasn’t thinking about my health. I hadn’t experienced any unusual SMA symptoms that week, and thus wasn’t expecting the urgency…

For the past couple of years, I’ve been playing a Star Wars role-playing game (RPG) with friends from church. Yes, you read that sentence correctly. My church is progressive and a number of us in the congregation are self-professed geeks. Once a month, we gather for several…

In the 1987 science fiction spoof movie “Spaceballs,” Princess Vespa (Daphne Zuniga) is betrothed to Prince Valium (Jim J. Bullock), who dozes off constantly. He has chronic drowsiness, so much so that he yawns when Vespa flees their wedding ceremony in a runaway spaceship. When I first…

A few weeks ago, my co-workers and I had a candid discussion about the things that tick us off. I work with a large team of patient and caregiver columnists from this site’s parent company, and we share many similar experiences and mindsets. Our monthly community calls over…

“We have to, Kevin.” That’s the text my caregiver, Christian, sent me several months ago when he found out that “Star Wars” actor Hayden Christensen would soon be attending a pop culture convention in Washington, D.C. We immediately agreed that we had to go. Logistics of my…

My caregivers give me a wedgie every morning. I’ll let that image settle into your brain before I elaborate. This part of my routine bears no resemblance to the act of torture commonly featured in teenage movies. It’s still uncomfortable, but necessary in my case. Once my morning caregivers,…

When I was in Washington, D.C., last October for a Cure SMA advocacy conference, I used the Metro station to get to and from the city’s Capitol building. I hadn’t taken a train or subway in years, and my blatant lack of direction as I fumbled through…