At every briefing before their shift, the nurses at my local children’s hospital would glance at me with amusement. As a child, I was often in the hospital for respiratory issues, and I had acquired a reputation. Not for my SMA, mind you, but for the one request I…
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My local clinic isn’t actually local. Boasting neighbors like IKEA and the Midwest tourist trap that is the Mall of America, my clinic is a 20-minute drive — one way. I could take the moderately more scenic route if I didn’t have a penchant for running late, but I…
A little while ago, I went from using one nursing agency to using three. The change allowed me to find enough nurses to sustain the care I need with spinal muscular atrophy (SMA), and it taught me an important lesson about when to ask for help…
I was unprepared for the thrill I’d experience when I logged into the instant messaging platform, Discord, and clicked on the server for the two-day Games Accessibility conference. Also known as GAconf, the conference is hosted by the International Games Developers Association for people in the gaming industry…
I turn 28 on the day this column goes online. Though I thought it’d be fun to publish something on my birthday, I realize that 28 isn’t a particularly special number. It’s one year closer to 30, and it feels like an eternity from the legal drinking age…
The insecurity hits when I least expect it. I knew it would take me a while to adjust to post-grad life. I spent 20 years in school, eight of which were online. I didn’t have the social life people associate with college students living on campus. My life consisted of…
Disabled people and their loved ones are some of the most creative people on the planet, and I don’t just mean artistically. We have to find creative solutions to everyday problems we encounter as a result of our disabilities. Our world isn’t always accessible, and sometimes sees…
As I was leaving a doctor appointment a few months ago, I reached my breaking point. In fairness, it was long overdue. For weeks, I could feel the tension bubbling inside me. Anxiety would greet me at the office’s main entrance and sit in the empty chair…
Kevin Schaefer was a cute, spunky, almost-4-year-old when I lucked into a plum friendship with his mama, Cindy. My third baby, Jeffrey, had just been diagnosed with SMA type 1. Kevin, her third child, had a milder form. Cindy and I became fast friends. With three hours’ distance…
When we think about key moments in our lives, such as weddings and graduations, most of us have a tendency to wonder how things might have turned out differently. We’ll wonder what might have happened if we’d chosen a different career path, pursued a certain relationship, or moved to our…
