Columns

The Little Things Can Mean So Much

The other morning, I woke up to find a note on my husband’s wheelchair cushion: “Buttercup, please cook the sausage. Love, Todd.” He was reminding me of the bratwurst I had pulled out of the freezer a couple days before. His arms haven’t worked in years because he has ALS,…

A Look Forward: My Post-pandemic Predictions

I’m an avid trend-watcher and enjoy tracking how new phrases and products end up permanently woven into our daily lives. For example, only a few months ago, a mention of flattening the curve or social distancing would cause most folks to shrug their shoulders. Now, both phrases have become rallying…

We’ve Adapted Before, and We’ll Adapt Again

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…

Talking Trash with ALS

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…

Handling Stress During the COVID-19 Crisis

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…

7 Ways Life with ALS Is Similar to Life During a Pandemic

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…

My Strategy for Facing Change: Adapt, Learn, Survive

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…