The frustrating reality of living with chronic fatigue
In the 1987 science fiction spoof movie “Spaceballs,” Princess Vespa (Daphne Zuniga) is betrothed to Prince Valium (Jim…
Articles by Kevin Schaefer
Feeling angry is an inherent part of living with SMA
A few weeks ago, my co-workers and I had a candid discussion about the things that tick us off. I…
Embracing the obstacles when my SMA is one of the hotel guests
“We have to, Kevin.” That’s the text my caregiver, Christian, sent me several months ago when he found out that…
Doing everything differently is part of living with a disability
My caregivers give me a wedgie every morning. I’ll let that image settle into your brain before I elaborate. This…
This year, I’m embracing crip time as part of life with SMA
When I was in Washington, D.C., last October for a Cure SMA advocacy conference, I used the Metro…
Can joy and grief coexist? They certainly do during the holidays
The film “Everything Everywhere All at Once” features parallel universes, sprawling action sequences, and images involving hot dogs…
How living with SMA is like making a play
My brother and sister-in-law recently took my nephews to see “Paw Patrol Live!” when the show came to…
See the absurd issues of living with SMA; carry on anyway
In the 1989 comedy film “See No Evil, Hear No Evil,” the protagonists redefine the phrase “unlikely heroes.”…
How I relate to Stephen King’s ‘Misery’ as someone with SMA
Note: Spoilers ahead for the novel and play. My dad and I recently saw a play adaptation of Stephen King’s…
Why I’m taking Gandalf’s advice as I’m turning 30
“I wish the ring had never come to me. I wish none of this had happened.” Frodo says this to…