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.
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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…
The digital age has transformed how we connect, empowering people like me to engage with the world from anywhere. My tech obsession ignited around age 14 with the thrill of my first Nintendo DSi. Despite needing creative positioning for myself and my device, I was instantly hooked, often…
We’ve lived almost 29 years in a rural area in the glorious mountains of North Carolina. Simply looking out the window is a favorite home pastime. There, both comedic wild critters and a reposeful setting beckon, and I’m never disappointed. One of my favorite treats is a full moon shining…
When my mother was 7 years old, she moved to the United States without knowing a word of English. I’ve known this all my life but had never asked her what the experience was like until recently. After questioning her about it, I learned that my grandparents had sent her…
On a recent episode of my favorite podcast, “Beautiful Stories From Anonymous People,” host Chris Gethard spoke with an occupational therapist (OT). When this caller discussed her profession, she asked Gethard if he had any experience with her field as a patient. Admittedly, he knew little about it and…
When I graduated with a master’s degree in 2020, people kept asking me if I’d ever go back to school. I looked them in the eye and with all seriousness said, “Over my dead body.” Well, color me pallid, because it turns out I was wrong. It was my mom’s…
There’s a trend taking root in the SMA and disability communities that has me worried. It’s the idea that to gain independence as disabled adults, we must separate ourselves from our support networks and find ways to manage our lives and healthcare on our own. Society tells…
On Sunday, I climbed another mountain, and I’m giving a prayer of thanks and saying, “Hip, hip, hooray!” Why? Because I had my 42nd birthday on July 7. It’s a high moment for me because I’m now 40 years beyond the life expectancy I was given as a…
“The Sound of Music” isn’t just a beloved movie of mine. Growing up with an extraordinarily gifted musician mother, the sound(s) of music usually graced our lucky home. In her younger days, Mom performed numerous two-piano classical concerts with her oldest sister. Additionally, she frequently accompanied fellow…
