Wearing My Vader Mask at Night
Every morning when I wake up, I feel like my nose took a beating the night before. Grogginess is one thing, but when you factor in a BiPAP machine, it adds an extra layer of discomfort. As soon as I awake, I can’t…
Embracing My Inner Alien - a column by Kevin Schaefer
Kevin 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 Uncanny SMAers
Within the pages of the Marvel universe, one of the most iconic superhero teams is the “Uncanny X-Men.” There’s Cyclops with his optic blasts of energy, Marvel Girl with her telepathic and telekinetic abilities, Wolverine with his regenerative healing abilities and…
An Update on My Digestive Dilemma
A few months ago, I wrote about my ongoing stomach issues and the impact this was having on my daily life. Despite the subject matter, I somehow managed to maintain a serious tone in the column. Truth be told, I was too frustrated…
The Joy of Discovering That I Never Stopped Learning
Full disclosure: Although I was an English major in college, I didn’t read all the books I was supposed to. Oops. As I think back to my days as a student, I was so focused on the idea of getting the grades I needed to…
Reversing the Caregiving Roles in Our Household
“Pack my suitcase?” That famous quote from “Home Alone” coincides with a shellshocked expression on Kevin’s face. For a character who has no concept of independence at the start of the movie, packing his own luggage for a family vacation seems…
Embracing Disability Pride Month
July is recognized as Disability Pride Month, as it coincides with the anniversary of the signing of the Americans with Disabilities Act of 1990. Whereas this law secures basic rights for those of us with disabilities, disability pride is a phrase that encourages…
The Beauty of Interacting with Strangers
“I want to know, can you show me/ I want to know about the strangers like me.” These lyrics from Phil Collins’ “Strangers Like Me” play during an iconic scene from Disney’s “Tarzan.” As Tarzan and Jane swing through the jungle,…
Saying Farewell to My Beloved Canine Assistant
What follows is possibly the most difficult column I’ve ever written. Since 2020 has a recurring theme of being a never-ending dumpster fire for everyone, I suppose this bit of news was inevitable. A week ago, my family and I said goodbye to my service dog,…
The Annual SMA Conference Was a Little Different This Year
I was supposed to be in Disney World right now. I was planning on a week in the happiest place on Earth with some of my favorite people, followed by a comic convention back home. My summers tend to be full of travel and adventures, and this one…
Lean on Me — Literally
“I can’t carry it for you, but I can carry you!” Samwise Gamgee shouts in “The Lord of the Rings,” as he carries Frodo up Mount Doom to destroy the ring of power. It’s an iconic tear-jerker movie moment,…
