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,…
Columns
On Saturday, May 27, I’ll be boarding an Amtrak train at Union Depot in St. Paul, Minnesota, at some god-awful time in the morning. You can tell my mom was the one in charge of the trip itinerary. We have a layover in Chicago, and…
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…
Video Games, but at What Cost?
I don’t want to spend too much time talking about video games — mainly because I know some of my readers have never played one. However, for my last installment (for a while, at least), I want to discuss how video games and their inaccessibility have forced…
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…
Game developers will never embrace accessibility — unless they realize how much the medium means to disabled people. So, continuing with the theme of last week’s column, I want to talk a bit about “Star Wars: The Old Republic” (SWTOR),…
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…
I want to talk a bit more about game accessibility this week. But, unlike last week, I’m going to offer up some actual, concrete experiences that will hopefully make it easier to understand how I — a disabled person; more specifically, a…
I don’t really consider myself a gamer these days. I enjoy video games, and will occasionally take the day off to play the newest Star Wars: The Old Republic expansion, but it’s not my passion anymore. But 12 years ago, video games — in particular,…
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
- The day my new multitasking caregiver and I learned to find our rhythm
- Newborn screening tied to better daily function in children with SMA
- Apitegromab moves closer to potential FDA approval for kids, adults with SMA
- How comfort and routine are vital while living with SMA
- Screening leads to earlier treatment, better results for SMA children: Study
