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…
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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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…
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.
When my late husband, Jeff, was diagnosed with ALS in 2018, I knew it would bring emotional challenges for both of us. I expected — correctly, as it turns out — that we’d feel scared, anxious, and sad. I recognized the immediate and lingering shock it brought in different…
My late husband, Jeff, loved holidays. He was a sentimental person hidden within a sometimes gruff exterior, and his sweet side was never more evident than on special occasions. He celebrated Valentine’s Day, birthdays, and Thanksgiving with reverence, making each day meaningful with unique traditions, sumptuous meals he’d made from…
My late husband, Jeff, grew up in a family of seven kids. The oldest and youngest were girls, with five boys in between. Jeff was right in the middle, which, he liked to explain with a laugh, made him the most well-adjusted. While all the kids were close, Jeff’s best…
When my late husband, Jeff, was diagnosed with ALS in the fall of 2018, I’d heard of the disease only peripherally. Like many, I’d completed the Ice Bucket Challenge in 2014 without an inkling that someday this disease would affect someone I loved. Swept up in the momentum…
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