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 way toward the Johns Hopkins ALS Clinic, I could’ve felt trepidation, as sometimes on clinic…
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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After my late husband, Jeff, was diagnosed with ALS in the fall of 2018, I could not have managed without the help of other people, and he couldn’t have either. This is hard to write, but even harder to own. Asking for help used to be difficult for me.
I’ve read dozens, if not more, of the kind of column I’m about to write: first-person narratives that offer advice to one’s younger self, full of lessons learned from difficult life experiences. Before my late husband, Jeff, was diagnosed with ALS, I devoured these columns, always looking for some…
A few weeks ago, I had a long conversation with a stranger I met while traveling. She was a bold and smart young woman who shared tales of her solo trips as we flew. She insightfully concluded that travel had made her more resilient, aware, and resourceful. I agreed. Growing…
For my late husband, Jeff, and me, the most difficult and saddening aspect of his ALS progression was the loss of his voice. It was heartbreaking for both of us when he lost the ability to speak, also known as dysarthria, early in his condition. Much of Jeff’s…
I remember the times before ALS, when after a day away from the house at work or running errands, I’d drive home in anticipation of seeing my late husband Jeff’s blue pickup truck in the driveway. Jeff and I would often arrive home at about the same time each…
My late husband, Jeff, had a motorized scooter that gave us the freedom to move and travel as his ALS progressed during the summer of 2019, our first full summer living with the condition. The scooter was one of the first things Jeff ordered from Amazon as his…
When my late husband, Jeff, was diagnosed with ALS in October 2018, I remember the early, seemingly insurmountable feelings of fear and bewilderment. I remember understanding that we were out of our depth in a completely foreign world of symptoms, appointments, and terminology, layered with the unbelievable knowledge…
I’m writing this column on a tough and emotional day — the anniversary of the 2018 ALS diagnosis for my late husband, Jeff. For the day I might have planned, I’d be hiking up Old Rag Mountain in Virginia, perhaps sharing the pretty view on social media,…
ALS is notoriously relentless on the human body. But it can be equally brutal on our emotions, and for my late husband and me, this was especially true when he was diagnosed. When people ask about the process of Jeff’s ALS diagnosis, I usually recount the chronological story…
After my husband, Jeff, died from ALS in 2020, I found a video he’d taken by mistake right around the time of his diagnosis. He’d left his phone on and unintentionally recorded three minutes of his expression while sitting in our yard in the November cold, drawing on…
If you asked my late husband, Jeff, what he’d lost while living with ALS, he might have told you via text-to-speech technology that he missed his voice. His dry wit, irreverence, and affinity for gentle teasing relied, in some part, on his ability to speak. Or he might…
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