Columns

It’s strange to think that a little over two years ago, I witnessed — and participated in — the conception of SMA My Way, a patient-focused community sponsored by the biotech company Genentech to support all of those affected by SMA. A lot has changed since then. I graduated…

Life after high school leaves us with plenty of paths to choose from in our pursuit of various goals. College and careers are a few of the many options to be considered. After exploring volunteer work and other activities at the local disability center, I began searching for…

Ever since I can remember, I’ve been taught that I am a soldier in this war against SMA. My destiny is to help others fight it, too. Early on, people gave me gifts to help me remember my purpose. One person, inspired by my fight against an overwhelming opponent, gave…

My husband, Randy, is a beekeeper. I helped him with the bees until an unfortunate rash from a bee sting on my forehead landed me in the emergency room. My dramatic predicament likely stemmed from the combination of the bee’s momentum as she zoomed to the pasture across…

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…

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…