When my late husband, Jeff, was diagnosed with ALS in the fall of 2018, there were many unknowns. We didn’t know how fast or slow his progression would be. We didn’t know the course that ALS would take in his body, or when we would need interventions like a…
Thunder Road
— Juliet Taylor
Juliet lost her husband, Jeff, to ALS in 2020, 19 months after his diagnosis. Together Jeff and Juliet enjoyed being on the water, live music, pets, and traveling. She was his primary caregiver, and finds meaning and healing in helping individuals and families who are living with or have lost a loved one to ALS. Juliet lives with her rescue pup, Sailor, on the eastern shore of Maryland, in a home that Jeff chose because it reminded him of his beloved Green Lake in Michigan.
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This week I visited Oklahoma City for the first time. Ever since I met my late husband, Jeff, who died from ALS in 2020, I had wanted to go. It was a meaningful place to him; in 1995, he served as part of the Bureau of Alcohol, Tobacco, Firearms…
I’m writing this column from one of my favorite places with two of my most beloved people. It’s an overcast morning here at my little creek house on the eastern shore of Maryland, and I’m nestled in a rocking chair with a cup of black coffee, something I would’ve done…
Of all the scenes that stay in my mind from my late husband Jeff’s time with ALS, this is among the most enduring: Jeff, wearing a Navy baseball cap and a weathered T-shirt, sitting behind the console of a rented pontoon boat as he navigated the waters of the…
I’m writing this column from vacation in a place I once traveled with my late husband, Jeff, long before he was diagnosed with ALS in 2018. It was a dream trip of his, and we went together for his birthday more than a decade ago. On this trip, we…
Every May for the past five years, the nonprofit I AM ALS hosts a summit to raise ALS awareness, the hallmark of which is a display of 6,000 small blue flags planted on the National Mall in Washington, D.C. Each flag represents a person who is living with…
Today is my late husband’s 66th birthday. ALS took Jeff from our family just five days after he turned 60, and only 19 months after his diagnosis. Hearing the words, “This is ALS,” in the fall of 2018 was shocking and unbelievable. The early weeks and months after his…
In the early, scary months after my late husband, Jeff, was diagnosed with ALS in the fall of 2018, I started to realize that I had no idea what we were up against. At almost 50 years old, I’d heard of ALS only through the Ice Bucket Challenge and…
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…
The phrase “bucket list,” which has become popular in today’s culture, refers to a set of experiences or activities a person hopes to accomplish before dying. These might include visiting the Grand Canyon and skydiving, for example. While it was further popularized by the 2007 movie of the same name,…
Over the past few weeks, it’s been unseasonably and brutally cold here in Maryland, where I live. A severe storm coated much of the state with fluffy snow, then several inches of hazardous ice that hasn’t melted. This might be pretty if it weren’t so treacherous, leading to more accidents…
After my late husband, Jeff, was diagnosed with ALS in the fall of 2018, I could not have managed without the help of other people, and he couldn’t have either. This is hard to write, but even harder to own. Asking for help used to be difficult for me.
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