“And so castles made of sand Fall into the sea eventually.” — Jimi Hendrix From time to time, given my predilection for quoting songs in my columns, I’m asked whether a song triggers content, or if it’s subject matter in search of lyrics. The answer is, circumstantially, either. On…
Learning I had amyotrophic lateral sclerosis (ALS) was certainly a big adjustment. The changes to my life that slowly chipped away at my goals and sense of self made me feel lost. It was only when I observed ALS patients who were thriving that I was able to appreciate how…
In the days after my husband, Todd, was diagnosed with ALS, I was overwhelmed with what lay before us. But Todd went into preparation mode. “We need to sell the house,” he said. “We need to move near your family.” It took more than a year for the house to…
“What you need, my son Is a holiday in Cambodia Where people dress in black.” Those lyrics from the song “Holiday in Cambodia” by the punk rock band Dead Kennedys illustrate how counterintuitive any public holiday display may appear. Without knowing the context, all-black attire may seem odd. Yet,…
I realize the words “ALS” and “humor” don’t always hang out together, but in my life they often do. I’ve been living with ALS since 2010, and over the years, I’ve learned not to let a day go by without finding humor in the absurdity of it all. Most of…
“Does caregiving for ALS ever get easier?” I pondered the question someone had posted on social media. I couldn’t sleep for days after my husband, Todd, was diagnosed. I was consumed with anxiety and fear for the future. How was I going to parent our children as a single mom?…
When I was in elementary school, my mom would occasionally take my brother and me to Woolworth’s, our local five-and-dime store. We would often have lunch there, and my staple was the open-faced roast beef platter, followed by a hot fudge sundae. Afterward, my brother and I were left…
Living with ALS has its challenges. For me, the first year after my ALS diagnosis was the hardest. Looking back, I made some mistakes and wasted time and energy that I wish I could have back again. Although we each experience a different journey with ALS, I believe we all…
When our kids started school this fall, I had a sense of relief that my husband, Todd, made it to see our youngest begin middle school. He’s now at the same school campus as our 15-year-old daughter. I’m glad we’re dealing with a school transition while Todd is still with…
“Fear takes control — fear of the unknown Aware of what will hurt you You’re prepared to remain this way So sad yet safe with your afflictions Afraid to start a brand new day.” Those lyrics from the song “Fear (Of the Unknown)” by British alternative band Siouxsie and…
