When my late husband, Jeff, was diagnosed with ALS in 2018, I remember reading that it could be an isolating disease. I didn’t understand that at the time; our days were filled with testing appointments as we went from electromyography to blood work, swallow study to spinal tap. 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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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…
A few weeks ago, I was driving out of my neighborhood when I noticed a sheriff’s car passing me slowly, headed in the direction I’d come from. Reflexively, I made a U-turn and began following the officer, dreading the bad news that I was sure he was headed to my…
On my first date with my late husband, Jeff, he rhapsodized about his family. He was the middle child of seven, and it was clear from the start that his brothers and sisters were a central part of his life. They’d grown up together in a home in Wyandotte, Michigan,…
It’s been more than four years since I was a caregiver for my late husband, Jeff, who died of ALS in May 2020. Caring for Jeff is the hardest and scariest thing I’ve ever done, a fact that took me years to acknowledge out loud because I believed that…
As ALS Awareness Month comes to a close, it’s a good time to reflect on what we’ve accomplished, and perhaps more importantly, to find ways to both sustain and build upon our momentum as we search and fight for cures. For the past month, members of the ALS…
Like many others, I completed the Ice Bucket Challenge when it became a cultural phenomenon in 2014. Created by Anthony Senerchia, Pat Quinn, and Pete Frates, who were living with ALS and have since died from the disease, the challenge involved being doused with a…
When I look back at photos from when my late husband, Jeff, was living with ALS — something I do often to find inspiration for this column — I’m struck by how many of our happier memories took place outdoors, even in the advanced stages of Jeff’s illness.
When my late husband, Jeff, was diagnosed with ALS, we were living in a small rented farmhouse that we both adored. Jeff loved the sprawling lawn that led to a tidal fishing pond and the flower beds that had been meticulously planted by the home’s owner. I appreciated the…
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 mysterious foot drop, and together our concerns grew when he began to slur his speech. From…
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 through Live Like Lou, the ALS organization that bears Gehrig’s name. When I met Jeff,…
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 days. My late husband, Jeff, on the other hand, was a winter person. As much as…
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 old coffee mug can bring immeasurable joy. I have one additional beloved thing, too: a quotation…
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