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 in October, backed by a second opinion in November. Because there’s no definitive test for ALS,…
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 lives, large and small. Some thoughts were comforting and reminded me of our happy life together:…
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 be outdoors, making sure my orange Tim Lowrey Panel T-shirt was visible under my jacket,…
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 changing our life, the more determined Jeff became to find ways around it. I was his…
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 often did. Jeff had lost his voice and most of his ability to walk,…
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 Annapolis, Maryland. If we had enough time and the weather cooperated, we’d take a…
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 loved ones honored his request to keep his ALS diagnosis private throughout the course of…
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 caring for him at our home while I went on a getaway. They wanted to fly…
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. He got a great deal of satisfaction from going above and beyond for people. Jeff was…
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 and boat houses. If I could conceive of the perfect lake, this would be it. My…
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