Summer brought moments of normalcy while living with ALS

Of all the scenes that stay in my mind from my late husband Jeff’s time with ALS, this is among the most enduring: Jeff, wearing a Navy baseball cap and a weathered T-shirt, sitting behind the console of a rented pontoon boat as he navigated the waters of the Chesapeake Bay and the tributaries local to Annapolis, Maryland, where we lived. He was playing classic rock on his phone and sporting a huge grin, partly from his pure enjoyment of boating and partly, I am convinced, from the sense of normalcy that summer brought him while he lived with ALS.

We often sought that sense of normalcy while living with the disease. It was hard to find as ALS progressed, making those moments even more vital to his well-being. Normalcy, for us, came from listening to music (live, if possible), spending time with our pets (we still walked the dog up until days before he died, he in his power wheelchair and me on foot), and enjoying time outside. We both gravitated toward being outdoors for even the most mundane activities — meals, conversations, quiet time — and that made summer our favorite season.

I can measure Jeff’s ALS by summers. The first, in 2018, started full of optimism and possibility. We’d just moved into a rented farmhouse on the water in Annapolis. We’d joined a boat club and were spending our days cruising the South River, stopping at local waterside restaurants for seafood and iced tea. We were aware of the progressing, mysterious symptoms that had begun as annoyances the previous autumn: a foot drop and a wasting calf muscle initially, then, as we moved into summer, slurred speech and muscle fasciculations. We started the summer sweetly unaware of what ALS even was, and ended it in fear as we got closer to his diagnosis early that fall.

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The second summer, 2019, was Jeff’s only full summer living with ALS. In June, he could walk very short distances — feet or possibly yards — and needed help with transfers to and from the Amazon-ordered mobility scooter we’d use for longer walks. Our focus was on creating memories, seeing family, and enjoying peaceful moments outdoors.

We’d begun the summer with a trip to Alberta, Canada, where we’d taken the scooter up a gondola and off-roading on gravel trails, testing its intended use for sure. Back home, I remember moments sitting on the sloping grass that led to our pier, Jeff on the scooter and me in a wrought-iron patio chair, him smoking a cigar and listening to baseball. We spent what felt like an eternity staring out at the water that summer, lost in our own frightened thoughts, but enjoying moments of laughter too as we watched our dog, Rudder, play along the shoreline.

Jeff Sarnacki drives a boat on the Chesapeake Bay in July 2019. (Photo by Juliet Taylor)

The summer of 2020 was marked by raw and acute grief, as he’d died just a few weeks before the season began. Jeff’s ALS had been progressing rapidly, and we both knew it, but we honestly thought we’d have one more full summer, enjoying days on the patio at the new house he’d chosen for its ease of mobility.

I’d arranged with work to take a leave of absence so that we could spend more time together, but he died just five days into my leave. When I look at pictures of myself from that summer, I see sadness and exhaustion and hardness. I looked years older, at that time, than my chronological age.

Writing this now in July 2026, summer is still the season that reminds me the most of Jeff, who is in my thoughts and my heart every day. I still live in the house he chose and where he spent the last months of his life.

While I’d thought at the time that he chose this home for its mobility features, I see now that he clearly had my life after his ALS in mind, too. It is small, welcoming, quiet, and safe, nestled among trees and friendly neighbors at the foot of a creek. It has proven to be a peaceful place to live among my memories of him, and to build new memories, too. It teems with wildlife, which is a fitting tribute to him; he would delight in the ospreys and bald eagles, rabbits and foxes, and the numerous wild birds that visit the yard.

Every season is hard when living with or grieving from ALS. As time passes and the most meaningful memories rise to the top of my mind and stay there, it’s the warm weather and long summer days that help me remember and honor Jeff by living the way we both enjoyed.

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