As my late husband’s ALS progressed, we kept our bucket list simple

The phrase “bucket list,” which has become popular in today’s culture, refers to a set of experiences or activities a person hopes to accomplish before dying. These might include visiting the Grand Canyon and skydiving, for example. While it was further popularized by the 2007 movie of the same name, etymologists suggest it’s been in use for far longer.

When my late husband, Jeff, was diagnosed with ALS in 2018, compiling or completing a bucket list was the furthest thing from our minds. We weren’t thinking about attacking life with gusto, and he wasn’t ruminating on all the things he hadn’t yet had a chance to do. Rather, we were shocked and saddened by the news, even though by the time he was diagnosed, we were expecting it. It wasn’t a time to rack up experiences, but rather a time to process our desperation and grief.

It’s often said that acceptance is a stage of grief, but I don’t know that Jeff or I, or anyone who loved him, ever accepted his ALS. As a family, we understood that ALS would cut short the decades more of life together that we wanted. And, of course, that led to changes in how we lived and spent our time.

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To an outside observer, it would be easy to look back at our time living with Jeff’s ALS and call our experiences a bucket list. We traveled to the wilderness of Jasper, Canada, to observe bears and other wildlife. Jeff went to Las Vegas with his dearest friends for a weekend of steaks, cigars, and blackjack. Midway through his disease progression, we went whitewater rafting — perhaps not the safest idea, but one that brought Jeff such joy that he deemed it worth the risk.

When I look back on those experiences, I realize that they were never about accomplishing a certain thing or traveling to a specific place, two possible hallmarks of what people call a bucket list. Quite simply, they were about togetherness. While on some occasions we were together in some pretty cool spots, the memories we made were about funny stories, inside jokes, and further bonding with the people he already loved.

I think back, for example, on the constant presence of the lifelong friends he made while serving in the Bureau of Alcohol, Tobacco, Firearms, and Explosives. They showed up for him with love and irreverence, treating him no differently than they always had. One of my favorite memories will always be watching his friends John and Al work to assemble a complicated shower chair in our driveway on one of the first warm days of spring. Jeff, from his wheelchair, disapprovingly supervised as all three grew frustrated and started laughing.

I think about days sitting on the front porch of our farmhouse and unboxing Jeff’s latest Amazon purchase, which could be anything from smoke detectors to peanut butter. I remember, even late in his disease, when he told me to come outside and look at the stars because they were beautiful. I smile when thinking about our long, lazy days relaxing by the water with no agenda, him listening to baseball on the radio, and me chasing the dog through the tall grass. I think everyone who loved him has their own list of simple joys shared together.

What I realize now is that Jeff’s people comprised the ultimate bucket list. While we experienced some momentous occasions during his time living with ALS, it was daily togetherness that provided some sweetness and relief to the fear and uncertainty that ALS brings.

I remember the last days of Jeff’s life, eight weeks into the COVID-19 pandemic, when the country was on lockdown. We weren’t going to miss the chance for his loved ones to gather, and so, fully masked, we did. We listened to his favorite music, and he found time to tell each of us, via his one working hand and his phone, how much we meant to him, and vice versa.

In the end, what mattered to Jeff, and to those who loved him, were ordinary, peaceful moments, regardless of where we were and what we were doing. While our trips and adventures were enjoyable, and I still live with the happiness of those memories, what buoyed him through ALS most was the simple and enduring presence of family, friends, and pets.

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