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…
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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Why sharing is important amid the sadness of May
I remember the emptiness I felt the first September after graduating from college. I’d been a student for 16 of my 21 years at that time, and the void of not going back to…
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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…
What friends taught us during life with my husband’s ALS
Making and keeping friends did not come naturally to me in childhood. I was shy, and my introversion and love of books often kept me curled up on the couch reading while…
How being outside improved our emotional health in life with ALS
When my late husband, Jeff, and I were living with his ALS, we were both drawn to spending time outside. While this wasn’t all that different from our life before ALS,…
Running on faith: How embracing a challenge gave me perspective
On a bitterly cold morning in New York last weekend, I woke before the sun and walked through the empty city streets to the Times Square subway station. From there, I caught a train…
Of touchdowns and togetherness: Creating the moments that define us
On a snowy morning three years ago, in Ann Arbor, Michigan, my late husband, Jeff, sped the entire length of the University of Michigan football field in his blue power wheelchair.
After ALS, hospital waiting rooms bring memories, reflection
Today I had a mammogram. We have a family history of certain cancers, so I’m careful to get recommended screenings. After losing my husband, Jeff, to ALS, I feel a bittersweet commitment…
Finding hope, expertise, and compassion — and an ALS clinic
While my late husband, Jeff, was living with ALS, there was a place where we both felt supported and hopeful, his disease understood. Driving through the streets of Baltimore as we wound our…
