Why talking about caregiving is hard — but so important
Even before my late husband, Jeff, was diagnosed with ALS in 2018, we approached his unusual and alarming symptoms as a team. He’d shared with me from the beginning his painless but…
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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Adapting helped us keep the outdoors a part of life with ALS
My late husband, Jeff, and I shared a love of the outdoors, even though our preferred activities were often different. I loved to hike and kayak, while Jeff, who’d been injured when a car…
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Lou Gehrig’s legacy lives on through ALS college scholarships
I’ve written before about how my late husband, Jeff, drew inspiration from Lou Gehrig, even before his ALS diagnosis in 2018. Today, I’m sharing how I now do the same…
How winter weather brings stress when living with ALS
I have always been a summer person, relishing how everything in nature quietly comes to life — lush, green grass, abundant wildlife, and densely leafy trees. To me, summer evokes peace, calm, and lazier…
How I learn to live from those we’ve lost to ALS
In the wake of ALS loss, certain touchstones bring comfort every time I think of them. This includes small things like funny photographs, private nicknames, and sentimental gifts. In grief, even a favorite…
Restarting New Year’s resolutions with 3 goals for the ALS community
I’m not a big believer in making New Year’s resolutions. There’s something that feels bad about setting a goal that’s lofty — learning a new language is one of my perennial favorites, for example…
Preserving a loved one’s voice can be the sweetest holiday gift
A few weeks before Christmas Day in 2018, my late husband, Jeff, and I sat side by side on the edge of our bed, preparing to create the most meaningful Christmas gifts we’d ever…
Amid the loss caused by ALS were important lessons on how to live
My late husband, Jeff, was diagnosed with ALS just before Thanksgiving in 2018. His diagnosis had come swiftly — we’d first heard mention of ALS in July and his illness was confirmed…
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…
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…
