How I’m judging myself when I don’t remember moments
When my late husband, Jeff, died of ALS in May 2020, I was awash in grief and lived in a world completely inhabited by memories. I obsessed over our every detail of our…
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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Honoring holiday traditions during and after life with ALS
One of the things I cherished most about my late husband, Jeff, was his love of the holidays. From the year we began dating until our last Christmas, before he died from ALS…
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How hope is everywhere when our community gathers
This past Sunday dawned crisp and cool on the eastern shore of Maryland, with a hint of light rain falling from a few clouds dappled against an otherwise vivid blue sky. I dressed to…
Why I’ll never use handicapped parking until I need it
One of our greatest sources of joy and normalcy when my late husband, Jeff, was living with ALS was getting out and about in the community. The more ALS seemed intent on…
How dogs brought comfort and joy during life with ALS
I have a vivid and beautiful memory from a few summers ago, as my late husband, Jeff, and I lived with his ALS. We were spending a day on the water, as we…
Holding on to happiness when sorrow arrives
My late husband, Jeff, made a dream come true for me. When I was a kid, my dad would take our family on our small powerboat to explore the waters near my hometown of…
Deciding when and what to share after a diagnosis of ALS
Like many in the ALS community, I was saddened to learn of the recent death of Bryan Randall, a photographer and the partner of actor Sandra Bullock. I respected that his…
Being an ALS caregiver changed my understanding of self-care
My brothers-in-law made me an incredibly kind offer while I was caregiving for my late husband, Jeff, as he was living with ALS. They offered to spend a long weekend in January…
The best cup of coffee I’ve ever had
Throughout our relationship, my late husband, Jeff, was the partner who most enjoyed taking care of people and things. He built wooden furniture and personal gifts, tended to flowers, and prepared meals from scratch.
Finding ways to stay close to those we’ve lost to ALS
Green Lake, in northern Michigan, is verdant and peaceful. Evergreen and aspen trees grow right to the water’s edge, and the shores are dotted with summer cottages and a smattering of small docks…
What Lou Gehrig taught us about life, decades after he died
The first text message my late husband, Jeff, ever sent me was just one word. We’d had our first date the previous evening, and our dinner at a sidewalk restaurant on a mild autumn…
Why last week was special in the ALS community
I love inspirational quotes and sayings. Throughout my life, I’ve stumbled upon passages from books or snippets of speeches from public figures and recognized them as a helpful way for me to understand or…
What the month of May now means to me
May has always been my favorite month of the year. Here in Maryland, the trees have filled in with lush green leaves, commercial crabbing boats have begun to quietly travel my small creek in…
