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 and boat houses. If I could conceive of the perfect lake, this would be it.

My late husband, Jeff, waxed poetic about Green Lake long before I had the chance to visit there with him, and long before his ALS diagnosis in 2018. Looking for the perfect fishing spot, he and his brothers had discovered this 2,000-acre inland lake by happenstance about 25 years ago, and had subsequently spent several weeks a year fishing here.

Fishing to them was serious business. The brothers would rent a lakefront cottage and drive north from Detroit, pulling a fishing boat, cars laden with fishing gear, simple camp food, and cold beer. They’d get out on the water at first light, fishing until about 2 p.m. After a lunch break, over which they’d discuss adjustments to their gear, hot spots, and new fishing techniques, they’d head back out until it was almost too dark to see, then do it all again the next day.

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I’m writing this column today from a deck overlooking that same lake, just a few cottages down from the original one that Jeff and his brothers rented. Over time, the intense fishing trips evolved to include wives and girlfriends, and it’s through this that I got to know Green Lake and, more meaningfully, Jeff’s family. As a larger group, we’d spend days on the water, sharing funny stories and listening to music from Interlochen Arts Camp, which is also situated on the lake.

Jeff’s last visit to Green Lake was in June 2019. He had mostly lost his ability to speak and was having trouble walking — a power chair would come just three months later — so his brothers would hold him up on the pier as they went out to fish together. This trip was not sad — it was filled with funny moments, inside jokes, and togetherness. When I look at pictures from the week, many of which are hanging on my walls, I feel gratitude for him including me as part of this special place and family.

Later that year, we decided to move to a home that would accommodate his medical needs. After looking at dozens of possibilities, we settled on a waterfront cottage simply because it reminded him of here. For Christmas that year, I hand-painted a sign naming the house Green Lake East. In the final days of his ALS, our family positioned his hospital bed in front of the French doors and opened them wide to the water.

A few months after Jeff died in May 2020, the rest of us traveled back up north. None of us remember much about the week; we were all deep in early grief, and the time together brought us comfort and the chance to reminisce. We didn’t boat that week; instead, we had nightly fires in the fire pit and more quiet time than usual.

We have returned together every year since. It’s my most cherished tradition.

What I love most about being at the lake now is that Jeff is here with us. I don’t mean he’s here in some ghostly way, rather, he’s present with us. He’s part of every story. His absence, which we all feel acutely each day in our own way, is lessened. We remark on what he’d think of a funny scene or story. We prevail on him for fishing luck, and this week, it’s working.

It would be far better if he were here with us physically, just like the old days. But since we don’t have that gift, we choose to recognize the time together that he originally brought to us, and still continues to. In that way, Jeff does and always will continue to live on.

It’s my hope that every family or group of friends with a loved one with ALS has a Green Lake — a place, whether physical or emotional, where they can be together, creating memories now and offering a bridge through which they can access their loved one at any time in the future. ALS may take people from our sight, but it cannot take them from our hearts.

I only get to Green Lake once a year, but I can and do visit my memories of here every day. Knowing that this idyllic, beautiful, and meaningful place exists, and always will, keeps Jeff close for all of us.

Juliet’s late husband, Jeff, middle, is supported by two of his brothers as they leave for a day of fishing on Green Lake, in Interlochen, Michigan, in June 2019. (Photo by Juliet Taylor)

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