Author Archives: Kevin Schaefer

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…

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…

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…

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…

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.

Navigating the Many Highs and Lows of Life With SMA

I recently attended my first pop culture convention since the onset of the COVID-19 pandemic. Masked up, I felt right at home among the crowds of “Star Wars” and “Stranger Things” cosplayers passing by. Though it had been three years since my last con, I eagerly anticipated a…

Riding the Roller Coaster of Being a 20-something With SMA

In the film “Licorice Pizza,” 20-something protagonist Alana (Alana Haim) leaps from one adventure to the next in the eccentric atmosphere of 1970s Southern California. She meets the smooth-talking teenage actor Gary (Cooper Hoffman), who’s immediately smitten with her. Together, they start a business, encounter a cast…