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…
Embracing My Inner Alien - a column by Kevin Schaefer
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…
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…
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…
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…
“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…
“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,…
Recent Posts
- No one knows what they’re doing and everyone is doing their best
- Itvisma approval ushers in era of therapeutic choice for SMA patients
- There’s no place like home for the holidays
- Newborn screening for SMA boosts health, saves money: Study review
- Community is nonnegotiable for thriving with a rare disease
