Embracing My Inner Alien - a column by Kevin Schaefer

wheelchair malfunction, movie theaterKevin is a writer, podcaster, and lover of all things pop-culture. Diagnosed with SMA Type 2 at the age of 18 months, he shares a vast array of hilarious and eye-opening stories from his life with a neuromuscular disability. In addition to his weekly columns, he works as the Director of Forums for this site’s parent company, BioNews. Kevin is a graduate of North Carolina State University and lives with his parents in Cary, NC. People regularly mistake him for Tony Stark, on account of his intellect and advanced technological equipment.  

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 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 saw…

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 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 Zoom…

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 that viewers will never forget. It’s a highly cinematic, cross-genre epic. But at its core, it’s a movie about family and relationships. The film’s two central characters are a mother…

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 our area. Anyone who has kids under the age of 5 is likely familiar with the popular animated series about a canine police force. The live show brings these characters…