As those of us with spinal muscular atrophy (SMA) know all too well, people with disabilities often face a slew of assumptions and misconceptions. To improve awareness and understanding, I want to address five of the most prevalent myths I’ve encountered, especially as I’ve become more visible and engaged…
Near the end of 1995, my husband, Randy, and I purchased an old farmhouse, situated on almost 15 acres with a little mountain. There was no trail up the mountain, but our optimistic (and younger) selves were determined to investigate what was on top. As we hiked up, we giddily…
My 7-year-old niece, Lily, has an unparalleled level of curiosity. She asks questions about the world, when we’re going to Disneyland next, and whether I’ve seen every episode of “Full House.” The answer to the latter is yes. Lily also inquires about my life with SMA, and…
If you’d asked me a year ago what my plans were for SMA Awareness Month, I would’ve come back with a laundry list of items, from Instagram Reels to the Minnesota Walk-n-Roll event put on by Cure SMA. This year looks a little different. Part of it is…
To highlight SMA Awareness Month this August, I could go on and on describing the physical aspects of my life that occur every day. For example, I could talk about the aggressive respiratory care my mom and my nurses provide me to keep my lungs clear. Or I could…
In a tourist shop on the coast of Lake Michigan a few summers ago, my mom spotted a sticker depicting the town’s lighthouse in the style of my favorite painting, Vincent Van Gogh’s “The Starry Night.” She suggested that it’d look cool on my power wheelchair, and…
With August officially here, I feel like I’m in a competition with time, frantically trying to make the most of summer before it’s gone. In doing so, I’m putting unnecessary pressure on myself. I’m measuring my days by how much I took advantage of the warmer weather and beating myself…
“It’s just a flesh wound.” The black knight utters this famous line in “Monty Python and the Holy Grail” after losing both arms in battle. He then continues to fight in a slapstick manner and taunt his opponent as blood gushes out of his sides. Ah, I love…
I was supposed to be preparing for an upcoming work trip to Austin, Texas. Instead, I was sitting in a hospital room, waiting for the doctor on call to look at the area around my gastrostomy tube (G-tube). I’d spent the past several months in a nebulous state of health.
I don’t always feel helpless, but when I do, there’s a bug in my vicinity. My house has felt like bug central this summer, and I’ve strongly considered moving out. OK, the latter half of that sentence might be an exaggeration. However, given that spinal muscular atrophy (SMA) doesn’t…
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