Columns

I brought “Some Bright Nowhere” by Ann Packer with me to Florida as my spring break beach read, but it wasn’t exactly light material. It’s a novel about a woman dying of cancer. Columnist Kristin Neva’s spring break beach read was “Some Bright Nowhere” by Ann Packer. (Photo by…

I originally planned to write this week about the small ways I’m maintaining my mobility and muscle strength while living with ALS. However, I waffled back and forth about whether this was a suitable topic. My hesitation wasn’t because my observations were unreliable, but because I worried readers might…

I left my husband, Todd, at home in Michigan last week while I flew with our teenage son to Florida during his spring break. Getting away takes planning and requires a lot of help at home while I’m gone. For me to be able to leave, we had to assemble…

Some days, my life with ALS feels like I’m trying to force a square peg into a round hole. On second thought, forget “some days” — I feel that way almost every day. There are the small irritations, such as having to wrestle with uncooperative Velcro on my…

When my husband Todd’s new power wheelchair was delivered, he tried a device that allowed him to control it with his eyes. It included software running on a tablet computer and an eye-tracking system mounted to the front of the chair. He found the system frustrating because he was…

My husband, Todd, and I work on New York Times puzzles while we eat breakfast. I sit next to him and feed him bites of his breakfast while I eat, too. One puzzle we work on is the Spelling Bee, where we earn points by forming words from seven different…

“Be like a duck: calm on the surface, but always paddling like the dickens underneath.” That was an ongoing joke shared among my fellow hospital department managers during my working years. It’s a quote often attributed to actor Michael Caine, and it perfectly represented our mindset: putting on…

After living with my husband Todd’s ALS for more than 15 years, shouldn’t I be better at navigating this disease? Author Malcolm Gladwell popularized the idea that mastery comes after 10,000 hours of doing something. If that’s true, then surely I should have ALS figured out by now.

I’m not a pushy person. OK, maybe I’m pushy when I really have to be. Usually, I’m willing to adapt, adjust, and endure the many small daily challenges that come with living with ALS. But when it comes to lacking the proper modifications for my specific symptoms, I’ve…

In 2021, I participated in a Zoom meeting about ALS community engagement. My husband, Jeff, had passed away from the disease a year earlier, but I have remained involved in advocacy. It was during the meeting that I met a compelling young woman named Leah Stavenhagen. Then in her late…