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Since my husband was diagnosed with ALS a decade ago, we’ve adapted to this difficult life in ways I never would have expected. After leaving rural Michigan for college in Chicago, and then living in Milwaukee, I didn’t think I would end up living in a handicap-accessible house across the…

The ancient Greeks first introduced the term “parrhesia,” meaning “free speech,” around the end of the fifth century B.C. From a literal perspective, ALS has taught me that the concept is a misnomer. Like nearly everything else, there is…

What an emotional roller-coaster time we’re in right now! During this COVID-19 pandemic, I’ve felt the upswings of coping and adapting well, followed by the downswings of worry that this crisis would never end. Only when I took a step back, to reflect on my feelings and identify what…

When someone asked my husband how he is doing in light of COVID-19, Todd replied, “Our life isn’t that much different. Now everyone else is dealing with what we have been living with for years.” There are similarities between life during this pandemic and life with ALS. 1. We already…

Recently I chanced upon a re-broadcast of an entrée from the PBS series, “American Masters.” As the subject, Andrew Wyeth, was one of my late dad’s favorite artists, I enthusiastically opted in. It did not disappoint. Beyond inspiring…

Social distancing? Shelter in place? For many like me who live with ALS, the recent COVID-19 guidelines to “stay home” and “work from home” are what we already do! Every. Single. Day. Getting out and about for a quick trip to the grocery store or a meal at…

After my husband, Todd, was diagnosed with ALS, we battened down the hatches to prepare for the coming storm. We moved to be near family in the Keweenaw Peninsula, a sliver of land that stretches into Lake Superior. The big lake is an apt metaphor for life with ALS.

My 14-year-old daughter woke me up at 4:45 a.m. “Do you hear that?” “Hear what?” I asked groggily. “You don’t hear anything?” Panic rose in Sara’s voice. “No.” I sat up. “You don’t hear that?” she said, just after I too heard a high-pitched chirp. “Yes,” I said. “It sounds…

“Baby, you can drive my car …” I was reminded of that Beatles lyric last Sunday while listening to my pastor’s sermon. Titled, “Taking the Back Seat,” the sermon’s theme was about subordinating our desire for control in favor of…

Spring — the kickoff for a multitude of ALS awareness events — is just around the corner! Many are already gearing up, and this is my signal to dial up my mental resilience. It helps me support their messages while keeping a firm hold on my sense of me.