Columns

Among the many challenges I experienced during my early months with ALS was the eerie prophecy of a life expectancy of two to five years following diagnosis. Besides putting the brakes on all of my future hopes and dreams, it made my brain feel worthless. I’d ask myself,…

Last week on NPR’s “Morning Edition,” correspondent Ashley Westerman talked about Ukrainian women getting manicures. “It’s just part of looking as good as you can. It’s a matter of hygiene for some but mostly a way of feeling normal in wartime.” The piece resonated with me because I’ve…

Were you able to watch the recent Paris Olympics? I did, and I’ll admit I tuned in nearly every day. But I wasn’t always such a die-hard fan. Oh, I used to look forward to watching them — until I was diagnosed with ALS in 2010. Abruptly, I felt…

I’m writing this column while gazing out over a foggy Pacific Ocean, aboard a ship that’s taking a group of us from Vancouver, British Columbia, Canada, to the icy waters of Glacier Bay, Alaska, and back. Intermittently on this voyage, pods of porpoises come racing close by the ship, and…

A month ago, one of my husband’s nighttime caregivers gave notice that she won’t be able to work beyond the summer, and our search for her replacement began. I asked Todd’s other caregivers to spread the word, I posted on my Facebook page about it, and Todd reached out to…

Those crazy, runaway thoughts. When I was young, I used to have them all the time. That’s because I didn’t know the whole story about certain things, so my mind would invent the answers. While growing up, I learned the value of having all the facts, and my crazy…

“I really want to go to your performance,” my husband, Todd, told our daughter, Sara, who was starting a weeklong intensive with Eisenhower Dance Detroit that will culminate in a performance Saturday. “It’s just too hard to get out, and I don’t want to sit in the theater with…

A couple years after my husband, Todd, was diagnosed with ALS, we moved to the Keweenaw Peninsula of Michigan to be near my parents. We had two small children at the time, so we’d explore the shores of Lake Superior for family outings. We spent time at McLain State…

Copying someone’s actions can be fun and help us learn new things. But imitation can also be dangerous, especially if you live with a serious condition such as ALS, which I have. I learned a lesson in imitation many years ago, while I was teaching a class in aerobic…

When my late husband, Jeff, was diagnosed with ALS in 2018, I remember reading that it could be an isolating disease. I didn’t understand that at the time; our days were filled with testing appointments as we went from electromyography to blood work, swallow study to spinal tap. Our…