Columns

Finding My People

I cried again as I read yet another social media post by a caregiving spouse whose husband just died from ALS. ALS kills someone every 90 minutes, and I’ve made online connections with many caregivers, which means I frequently read of somebody’s loss. I cry hardest when another mom…

When We Do Something, Something Happens

Hang on tightly, it’s another week of weather events, news alerts, and a continuing health crisis. I feel like I’m riding on a big airplane flying through rough turbulence. Certainly, living with ALS has taught me I can’t control the jiggles and the bumps, but I can control how I…

The Burden of Knowing the Future

Lulu Wang’s film “The Farewell” is based on an actual lie. The 2019 comedic drama looks at a family’s decision to keep their matriarch ignorant of her stage IV lung cancer diagnosis with a prognosis of death in three months. Billi, a Chinese American woman, travels to China for…

Things to Do While Waiting for a Cure

Big news buzzed through the ALS community last week about AMX0035, an investigational treatment for ALS that just finished a Phase 2/3 clinical trial. Early results indicated that AMX0035 slowed the progression of ALS symptoms. Although discovering a cure for ALS is still the ultimate goal for…

Gaining Perspective Through Journaling

Perspective can be hard to come by with ALS, but writing has helped me keep my head above water. I’ve kept a journal since I was a kid. I wrote my way through teenage angst, my musings during my college years, the challenges of trying to help the teens I…

Learning to Pivot When Living With ALS

All around me, I’ve been noticing how people, businesses, and organizations are pivoting to survive these challenging times. We’re getting confident using Zoom, dine-in restaurants have expanded their takeout business, and ALS fundraisers are holding online events. I love seeing all this successful pivoting. It gives me hope. Pivoting,…

Now, Our Favorite Restaurant Is Inaccessible to All

My husband, Todd, and I celebrated our 17th wedding anniversary in late August with a date at Fitzgerald’s, a restaurant built on the shore of Lake Superior in Eagle River, Michigan. A permit to build on a beach would never be approved today, but it could be done in…

Going With My Gut

Looking forward to getting a flu shot is something I never thought possible. But at this point in what has been a very strange year, it’s a darned good excuse to get out and do something. In past years, I followed health guidelines and always waited until early October…

Friends Who Can Handle Chronic Illness

In his book “Out of Solitude,” Henri Nouwen writes, “When we honestly ask ourselves which persons in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch…

Finding Sweetness in the Eye of the Storm

Just like Lionel Barrymore as James Temple in “Key Largo“ and Gary Sinise as Lt. Dan Taylor in “Forrest Gump,” I survived a hurricane wheelchair-bound. Unlike the original works that those two movies are derived from, my hurricane…