When my doctor told me that I had ALS, my reaction was like that of most newly diagnosed ALS patients. I felt a jumble of emotions and desperately wanted to let my friends and family know — but something held me back. Deep down I knew that when I…
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My husband, Todd, and I work New York Times puzzles while we eat breakfast. Because Todd is paralyzed due to ALS, I feed him. We start with the Spelling Bee puzzle, which offers seven letters for you to make words with. There is always at least one word that…
Fire the flare guns, turn on the ship-to-shore radio, and holler “Mayday! Mayday! Mayday!” That’s the first order of business for a ship that’s sinking. It needs attention — lots of attention. There’s even an official mayday relay procedure, which lets ships in the vicinity take turns relaying the distress…
Lately I’ve seen people on my social media feed dumping ice water over their heads to promote awareness of mental health, which took me back in time to the ALS ice bucket challenge in 2014. That viral sensation may have been the most effective tool for raising awareness…
The other day when I sat down at my computer, I discovered a small, beige envelope that had been left near my workspace. To my surprise, inside was a letter addressed to me from the rollator that helps me live with ALS. After a quick read of the note,…
Sometime in my mid-40s, I wrote a list of goals I wanted to achieve before turning 50. I no longer have the list, but I remember a few things on it: Learn a second language. Complete one half-marathon each year. And my then-favorite, visit 50 countries by the time I…
Signs of spring appear every day outside my kitchen window here in northern Michigan, even as my own life feels heavy with my care for my husband, Todd, who has ALS. After a long winter, our 2 feet of snow, which was in the field behind our house a…
Some days, my motivation just gets stuck. Even though I’ve got interesting plans and projects to do, I can’t get started on any of them. The reasons why can include not getting enough hours of sleep the night before, being caught up in the latest news cycle, or simply reflecting…
In the opening stanza of “For When People Ask,” poet Rosemerry Wahtola Trommer writes: “I want a word that means okay and not okay, more than that: a word that means devastated and stunned with joy. I want the word that says I feel it all all at…
The other day, my husband spotted me putting on my sneakers while using a long shoehorn and asked, “Wouldn’t that be a lot easier if we got you a pair of those new step-in shoes?” I’ll admit that living with ALS has me continually thinking of ways to make…
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