The ABC sitcom “Boy Meets World” was a staple of my childhood. My sister and I spent many afternoons watching the hilarious and often idiosyncratic adventures of Cory, Shawn, and Topanga play out. Cory was the loyal and good-natured protagonist who had a…
Embracing My Inner Alien - a column by Kevin Schaefer
In his essay for The New Yorker, “Who Am I?”, comedian Demetri Martin explores his identity both literally and figuratively. He opens by saying that he is “not a thing that is just lying around somewhere, like a pen,…
If 2020 were a movie, it would have the aesthetic of David Lynch and the shocking twists and horrors of a Stephen King novel, and it would run the length of an unedited Peter Jackson epic. Viewers would yearn for a filmmaker like Wes Anderson to sweep in…
It’s Been an SMA Kind of Day
Certain days can only be described as “an SMA kind of day.” It happens when the power cuts off in the middle of the night, causing the BiPAP machine to stop working and the hospital bed to sink. Or, when…
Do you sleep in your wheelchair? This is a question I used to get all the time in middle school. I always thought it funny that some of my peers genuinely thought that I remained in my chair around the clock,…
Adapting to a Season of Change
Around the corner from my house there’s a shopping mall that’s stood as an iconic symbol of my small hometown for decades. It’s across the street from the high school my sister and brother-in-law went to, and it’s also situated near my go-to Barnes & Noble store, as…
A Spontaneous Adventure
As my 27th birthday approaches later this month, I recognize that this year will be vastly different from past celebrations. With the current global health crisis, many of us SMAers are spending a lot of time in isolation. Though I’m able to go to certain outdoor restaurants with…
Treasuring the Little Things
My 3-year-old niece Lily sat next to me, absorbed in the pages of her “Frozen” coloring book. On my right, my dad also was busy coloring an elaborate picture for her and her baby brother. Back when Lily was born, my parents converted…
It took three people to complete my retinal scan during my vision appointment the other day. Most people can just prop themselves up against the machine, stare into the camera, and finish in no time. SMA, however, adds a few extra steps to this process. Once…
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…
Recent Posts
- SMA treatment normalizes blood signals linked to inflammation
- Disability inclusion and accessibility must become cultural practices
- Floppy neck, fragile grip, friendly smile: My 3 Fs of living with SMA
- A summer spent identifying my unpronounceable skin conditions
- SMA treatment linked to improved upper limb function in new study
