Last fall, in a creative writing course, I wrote a fictional letter that was mostly a satirical piece about my experiences with caregivers. I wrote it from the perspective of a father of a disabled son, who was complaining to the care-giving agency they were using. Aside…
Embracing My Inner Alien - a column by Kevin Schaefer
As much of a geek as I am, I can’t recall the first movie I saw in theaters or the first comic book I ever read. Yet, I do remember a time in fifth grade when I heard a song that blew me away and gave me…
I’m often asked by people how traveling works when you have SMA. The simple answer is that flying is a pain, and it’s much easier to do road trips. Over the years my family and I have gone on road trips to Florida, New York City, Missouri, Oklahoma, Colorado, Texas,…
As I wrote in a previous column, the unpredictability associated with SMA is in many ways the hardest aspect of the disease. I’ve broken my leg several times, but this was the first time the doctors allowed the bone to heal on its own, instead of casting it or performing…
To say that SMA can throw a curveball at you at any given moment is like saying that the “Star Wars” prequels could’ve benefited from more rewrites. There are some things that just go without saying, and every person who has SMA knows how unpredictable and difficult this disease…
A few weeks ago I had a conversation on Twitter with a guy about the recently announced Batgirl movie, which has Joss Whedon set to write and direct. The movie is slated to arrive in a few years. While the prospect of a Whedon-helmed Batgirl movie is enough to…
One Wednesday night when I was in high school, either freshman or sophomore year, my youth pastor, Todd, said something that has stuck with me ever since. We had youth group meetings at our church every week, and on this particular night Todd spoke about how Christians can stand out…
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
