Juliet Taylor shares her story of life with her late husband, Jeff, who was diagnosed with ALS in 2018. She reflects on the shock of his diagnosis, the fear and grief they navigated privately and together, and the courage, humor, and deep care that shaped their final years. Juliet also describes how the ALS community became a source of healing after Jeff’s death and why she continues to support others living with ALS or caring for someone with the disease.
Transcript
Hi, my name is Juliet Taylor. I live on the Eastern Shore of Maryland. I was born and raised here in Maryland, and I am one of the ALS columnists for ALS News Today.
I was the caregiver to my late husband, Jeff, when he was living with ALS. He was diagnosed with ALS in October of 2018. His progression was unfortunately faster than average for ALS, and he died here at home on May 20th, 2020. He was my husband and my best friend.
And together we faced ALS with fear and laughter and living our lives as normally and as best we could during a really challenging, difficult, and life-changing, obviously, time.
When we got that news that he had ALS, the first thing he said was, “Let’s go get some ice cream.” And that’s what we did. We went to Shake Shack in Baltimore and we had ice cream. And then we got home and he sat on the front porch and made some phone calls, and I went in the backyard and started wailing, crying, screaming. And I was like that for weeks. So was Jeff, but more privately so.
I called the ALS Association. I connected with a, with a social worker who answered the phone and, without knowing me from anyone, spoke with me for an hour that first week about what I could expect. But when I look back on that time, mostly I just feel, I remember the shock and the disbelief, the sense of unfairness, the sense of this can’t be real.
And at first, Jeff and I approached his diagnosis differently and privately. So I didn’t want to be upset for his sake. And he didn’t want to be upset for my sake. So initially, I think we hid a lot of those scary feelings from each other. I didn’t want to make him more upset, and I know he was worried about me.
After a few weeks, we really came together as a team and talked about how we were going to do this, and I give Jeff a lot of credit because the way that he chose to do ALS was certainly outwardly, very bravely. I know for a fact that he had his moments of, of darkness and fear, and it always brought us closer together when we could talk about those things.
He was funny and irreverent and sharp, right until the the day we lost him. And, I will always respect him and be grateful for the attitude that he took when living with ALS. Because it indicated so much care for the people around him, including me.
At the same time, I want to be honest that there were really scary dark times because with ALS, you know where this disease is going. It’s 100% terminal, and it would be disingenuous to say that there weren’t moments of great fear and concern and sadness about losing our future together and his future with his kids.
And, that was the other side to the coin of, you know, choosing to live, deliberately and intentionally. There’s also the side of the coin that is the sadness of what, what you know is coming.
ALS changed my life. And I’ve spent a lot of time in the ALS community since Jeff died. I find it really healing. And also, if I’m able to help others who are living with ALS or caring for someone living with ALS, I want to continue to do that.
The knowledge that I gained was really painfully won, and I want to be able to share that as best I can and support my friends and community members that are still living with ALS or its losses.
