As a kid, I was notorious for dropping my cherished action figures on the floor. Instinctively, I would turn to my older brother Brian to pick them up for me. A little irritated that I had interrupted his marathon viewing of SportsCenter and “Cops,” he had…
Embracing My Inner Alien - a column by Kevin Schaefer
I went to Barnes & Noble by myself while my mom went to dinner with a friend. I go out unaccompanied quite often, which requires a little extra effort on my part. When alone, I have to make sure I can maneuver my chair and…
On Turning 25
I turn 25 in a few days, which for me is a pretty substantial accomplishment. After four broken legs, two major surgeries, multiple run-ins with pneumonia, a couple of pills shoved up my butt, and far too many catheters, I’ve managed to carry on. I figure…
Lessons from My Former Editor
At the time of writing this, it’s been one week since the company I work for lost one of its true titans. On Sept. 26, our senior managing columns editor, Serena Lawrence, passed away. Beyond being one of the best editors I’ve ever had the pleasure…
A few months ago at church, an usher came up to me and made a gesture that was — in his mind — “nice.” Seeing me, the young guy in the wheelchair, he placed his hand on my shoulder and said in a loud voice, “Let me know…
Dragons, elves, magic, and a deaf female general are just a few of the things you’ll find in Netflix’s “The Dragon Prince.” The new animated fantasy series from the head writer of “Avatar: The Last Airbender” has already garnered many positive responses from critics…
“Normal” isn’t exactly a word that describes anyone with SMA. We do things differently than most people, have different challenges, and live unabashedly abnormal lives. (Just look at my diarrhea and disability column from last week.) Nevertheless, there is no reason why those of us…
Yep, I’m going there. If you’re easily turned off by poop jokes, just skip this column. SMA is tough, but diarrhea causes me pain and discomfort unlike anything else. When my body experiences this ungodly phenomenon, I want nothing more than to be…
In most superhero comics, movies, and TV shows, there’s usually an arc at some point in which the hero temporarily loses his or her powers. This happens in “Spider-Man 2,” “Supergirl” (season two), the first “Thor” movie, and in issue 12 of the comic book crossover “Crisis…
As a lifelong SMA patient, the sheer number of people on my healthcare team rivals the size of my immediate and extended family combined. Keep in mind that I come from a southern family with multiple cousins, aunts and uncles, grandparents, and even a couple of…
Recent Posts
- Daily SMA treatment helps adults with severe disease, study shows
- Counting my blessings during a crisis allows me to weather the storm
- Muscle ultrasound helps assess SMA in children treated with approved drug
- Honoring the proud histories of queer and disabled communities
- SMA gene therapy now approved in Europe to treat patients of all ages
