One night, I was woken by a beeping noise. That’s not altogether unusual, because alarms from my medical equipment occasionally sound throughout the night. I’m so accustomed to it that my mind sometimes incorporates the sound into my dreams instead of waking me. But this one was unfamiliar. What was…
Read more
Autumn and I have always had a complicated relationship. Its golden hues, pumpkin-patch allure, and cozy feelings entrance me like no other. Yet, amid this season’s spell lies one hard truth to accept: Winter is coming. For those of us living with spinal muscular atrophy (SMA), this means more…
When I was growing up, I gravitated toward creepy, hair-raising movies and books. I loved being spooked, especially on Halloween. I’d become deliriously giddy when the autumn wind in my native Fort Worth, Texas, howled during trick-or-treating. By the time I became a teacher of kindergarteners…
People with spinal muscular atrophy (SMA) may show subtle abnormalities in eye movements, but these abnormalities are unlikely to be caused by weak muscles; instead, they likely arise due to changes in the brain, a study found. The study, “Central eye movement abnormalities in patients with SMA types…
“It must be nice sitting in that thing all day.” Having lived with SMA for 32 years and used a power wheelchair since I was 2 years old, I’ve heard some version of this comment many times. Those who read my column regularly know that I enjoy making…
“Take the burden from my arms/ Take the anchors off my lungs …” This is the opening line to “Live It Well,” one of my favorite songs, by Switchfoot, one of my favorite bands. I woke up listening to it last week, and was struck by how…
Get regular updates to your inbox.
