Autumn stirs up vivid memories of my late husband’s ALS diagnosis

Autumn has a very specific feeling where I live on the Eastern Shore of Maryland. Right now, the daylight is getting shorter, the temperature is more brisk, and the lush greens of summer have given way to more muted hues as leaves get ready to change color and fall from their trees.

This natural evolution, as pretty as it may be, provides a backdrop of deep reflection for me. It’s been this way ever since my late husband, Jeff, was diagnosed with ALS during this season in 2018.

There is something visceral about the fall that subtly and consistently reminds me of the weeks and months surrounding Jeff’s diagnosis, which took place in October and was confirmed by a second opinion in November. I remember walking the pretty campus of the ALS clinic in Baltimore — a spot that reminded me so much of college — and thinking how odd it was to see such beauty juxtaposed with our uncertainty and pain. The vibrant leaves and cooler air could have brought comfort, but instead, they just reminded me of how the world can seem normal for so many while it’s collapsing for others.

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I seem to feel the losses of ALS more acutely in the autumn, even though Jeff died in the spring. ALS can take a long time — years, in some cases — to diagnose, but for Jeff, the determination was relatively quick. Our initial neurology appointments — those in which we still held out hope that Jeff’s symptoms could indicate absolutely anything else — began in the summer, but as the air grew cooler and the days shorter, our own window of optimism narrowed as well. By the time the leaves had fallen from the trees, his ALS diagnosis was confirmed.

On nearly every day that season, I walked in the woods. Jeff was still healthy enough to be alone — he could still walk, speak, eat, and drive — and so I processed my early grief in a local park with winding, narrow trails beside the water. I walked alone or with my friend Liz, our dogs running ahead of us, the falling leaves kicking up around our feet. Even today, I can picture every detail.

Recalling moments large and small

I notice that many of us in the ALS community observe quiet anniversaries and remember vivid details related to our own, or our loved one’s, life with ALS. Unprompted, we recall diagnosis dates, surgery dates, clinic dates. We remember exactly where we were sitting when we heard the words “you have ALS” for the first time. I remember our doctors’ expressions as they shared weighty observations, studying their faces for any further clues that would help me make sense of Jeff’s faster-than-average progression, or his prognosis. I remember the chime of the elevator in the ALS clinic parking garage, and the feel of the chairs in the waiting room.

Because I’ve stayed active in the ALS community after Jeff’s death in 2020, I am connected with friends living with ALS and their loved ones. I hear similar stories of remembering both major and seemingly minor details — offhand comments that stick in our minds, or otherwise insignificant moments that instead become vignettes we replay frequently.

As Jeff’s caregiver, I had, and still have, dozens of those memories. After seven years, I still remember his daily ice cream order as we tried in vain to keep his weight up. I remember the color of his shoes as I laced them onto his weakening feet. I remember the moment in Somerset, Pennsylvania, when Jeff told me he had decided to stop driving for good.

While I dislike the word “journey” for a medical diagnosis, I have come to believe that for Jeff and me, it was an accurate description of our time with ALS, and so I use that word to describe it. All journeys have a beginning, whether we know it or not, and ours was at this time of year. I am feeling it viscerally during these shortening days, and this year, I am using these feelings to stay in touch with how important it is that we end this disease.

Sept. 12. Oct. 11. Nov. 7. All of these days, and others, marked milestones large and small in Jeff’s and my journey with ALS. Hopefully, one day soon, we as a community will add a new date: the last time anyone is diagnosed with this disease.

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