To boldly go where the SMA community has not gone before
I was always a “Star Wars” acolyte, but I became interested in the world of the “Star Trek” science fiction franchise when I was in high school. Whereas “Wars” is a giant space opera…
Author Archives: Kevin Schaefer
What it means to go the distance while living with SMA
The album “A Whole New Sound” is a treasure trove of nostalgia for millennials. Released last month, it features early 2000s punk rock bands performing covers of iconic Disney songs. Listening to…
The comfort conundrum when living with SMA
In the family classic “Willy Wonka & the Chocolate Factory,” all four of Charlie Bucket’s bedridden grandparents share the same sleeping space. It’s a bewildering arrangement that fans have poked fun at throughout the years. Every time I…
Your SMA mission, should you choose to accept it
In the “Mission: Impossible” franchise, each movie starts with Tom Cruise’s character, Ethan Hunt, opening an encrypted message that outlines his next assignment. As an agent for the Impossible Mission Force (IMF), Hunt uses his unique skills to take down global threats that are too much to…
Why having a familial relationship with my caregivers matters to me
My 7-year-old niece, Lily, has an unparalleled level of curiosity. She asks questions about the world, when we’re going to Disneyland next, and whether I’ve seen every episode of “Full House.” The answer to the latter is yes. Lily also inquires about my life with SMA,…
To manage SMA pain, I had to force myself to slow down
“It’s just a flesh wound.” The black knight utters this famous line in “Monty Python and the Holy Grail” after losing both arms in battle. He then continues to fight in a slapstick manner and taunt his opponent as blood gushes out of his sides. Ah, I…
Embracing the unsung heroes of the SMA community
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…
Why we should embrace questions about disability
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…
I’m hopeful that travel will get easier for people with disabilities
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…
What I wasn’t expecting: A diagnosis of type 2 diabetes
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…