Columns

Life Imitating Art Imitating Life

“They’re gonna put me in the movies, They’re gonna make a big star out of me, … And all I gotta do is act naturally.” — Johnny Russell Two weeks ago, I referenced several catchphrases from…

Discovering the World Is Broken

“What the heck happened to that guy?” a young boy called loudly to a woman leading him and other preschool children across the parking lot. I was loading my husband, Todd, into the back of our accessible van, having just gotten our COVID-19 vaccinations. It was the first time…

I’m Craving a Measured Change of Seasons

“When she walks, she’s like a samba, That swings so cool and sways so gently, That when she passes, Each one she passes goes, ‘Ah.'” One day last month, if the “tall and tan and young and lovely” striking presence…

How I Live With Gravity, Coincidence, and ALS

I’ll admit that during my high school days, when our studies turned toward physics, I didn’t pay much attention. Gravity, the invisible force that keeps us on the ground and makes things fall, seemed so bo-ring. But in 2010, when I was diagnosed with ALS, the condition put me through…

With Clinical Trial Criteria, We’re Stuck on the Outside, Looking In

“Have you ever participated in clinical trials?” That’s a common question among ALS patients. What’s my standard answer? “It’s complicated. I’m participating in several studies, but even though I’d like to, I haven’t been in any clinical trials. I’m excluded because I’ve had ALS for too many years.” ‘What? Tell…