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…
Columns
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…
The surgeon didn’t find anything wrong with my lungs. They are, in her words, “perfectly clear.” Still, there was a significant amount of congestion around my voice box, which apparently explains the tightness in my chest. It just feels like there’s something…
I wish I could say things have become better since I wrote about my current health issues a few weeks ago. But for the most part they haven’t. My chest isn’t as tight as it used to be, and I’ve started addressing my fatigue with energy drinks. V8 V-Fusion, to…
Last night, I asked my dad what I should write about for my next column about life with spinal muscular atrophy (SMA). “Why you don’t write about the struggles you have with eating?” he suggested. I laughed. “No one wants…
I experimented with highlights in middle school. I wanted to get this professionally done, but my mother, who’s been dyeing her own hair for probably longer than I’ve been alive, insisted we use a box kit, like the kind you find at Target. It became a…
Last August, I inhaled something. I wasn’t too worried. It might take a few days, but usually when I inhale something, it comes out on its own. But this time it didn’t. So, I’ve been doing treatments. For months —…
I have called myself a writer for the longest time, and in many ways, I suppose I still do. I am, after all, a writer. But I have long since changed my Twitter bio from “writer” to “storyteller” because “storyteller” is far more reflective of who I am…
I was diagnosed with spinal muscular atrophy at nine months of age. No one ever knows what SMA is, so I always say it has something to do with my cells and their ability — or, I suppose, inability — to communicate. My brain tells my body to…
Recent Posts
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- Temperature regulation is challenging, but vital with SMA
- When an SMA diagnosis makes a headline — and when it doesn’t
- Nothing prepared us for the SMA diagnosis of our surprise baby
