Holding on to happiness when sorrow arrives
How my late husband helped me find joy after his diagnosis of ALS
My late husband, Jeff, made a dream come true for me.
When I was a kid, my dad would take our family on our small powerboat to explore the waters near my hometown of Annapolis, Maryland. If we had enough time and the weather cooperated, we’d take a slightly longer trip a few rivers south of our home. I enjoyed this trip best of all, simply because of one particular house we’d see each time.
Nestled on the shores of the river was a small, older farmhouse with a sloping backyard that abutted a pond. Beside it was a large red barn. I imagined how wonderful it must be to live there.
As I grew into adulthood, I’d continue to see this house on boating excursions with family and friends. I always maintained my affection for it; this home, which I knew nothing about other than its charm and peacefulness, came to represent both future dreams and a connection with my past.
When Jeff, then my boyfriend, and I were relocating to Maryland after several years away, he suggested that we settle near Annapolis. He loved boating and the water just as I did, and I was elated that he was willing to give my favorite town a try. Reasonably, he wanted to rent while we got reacquainted with the area, so I began a home search. The only catch: We had a difficult time finding a place willing to accept our 80-pound husky mix, Rudder.
As our move drew worryingly near, I found a potential rental. Online, the owner shared no pictures of the house, only the pretty waterfront view, and she was happy to accept Rudder. We set an appointment to visit, at which point I realized that, unbelievably, the house was the childhood home of my dreams. Jeff, Rudder, and I were delighted to move there just a few weeks later.
That summer, I couldn’t imagine being happier. Jeff cared for the sprawling yard, Rudder napped on the small pier, and I decorated our place with family pictures. The three of us spent most evenings watching the sunset, hosting friends, and simply being present in each moment. We joined a boat club and set off on the Chesapeake Bay on the weekends. Things felt surreally content.
Life takes an unexpected turn
As summer turned to fall, our days were increasingly defined by Jeff’s concerning, seemingly unrelated symptoms, which seemed to grow worse with each passing week. He’d developed a foot drop that spring, and by early fall, he was noticeably slurring his speech and choking, which frightened us. An astute young pain doctor raised the specter of ALS, which alarmed us both.
The ensuing weeks and months were an unrelenting series of highs and lows as we got alternatingly hopeful and pessimistic medical news through frequent appointments and sometimes painful tests — a process that may sound familiar to other families living with ALS. Often, the disease can take a year or more to diagnose, but by October, Jeff’s ALS diagnosis was confirmed.
In the first days after his diagnosis, I realize now, we were both in shock. I wanted to be supportive, but I could tell that Jeff didn’t want me to see him cry and needed time to process. I’d walk in a nearby park with Rudder and sob. Jeff and I agreed in retrospect that the days and weeks following his diagnosis were among the worst days of the ALS journey, a sentiment that I’ve heard others in the community share as well.
I lamented, too, the loss of our simple, now fleeting joy — our sweet, quiet contentment, our peaceful days and evenings on the patio. I felt selfish for having focused so much on our physical space and surroundings when life seemed to have just fallen apart.
Jeff, however, had different thoughts.
He reembraced the new life we’d just built. He doubled down on our peaceful surroundings, recognizing them for the gift that they were. Yes, we were heartbroken, but we were together in a place that made us happy. He continued to mow, feed the ducks, play fetch with Rudder, and host friends.
It was the first of many lessons Jeff taught me during his time with ALS — recognizing that happiness and sorrow can occupy the same space. After his diagnosis, our relationship grew even stronger and healthier. We gained perspective. ALS was terrifying and hard, but we approached it together.
Shortly after his diagnosis, Jeff and I got married in that sweet farmhouse on the river with eight people and four dogs in attendance. Though we later moved to a more mobility-friendly place, I still see it from the river sometimes, recognize it for the dream that it was, and thank the universe for bringing joy amid sorrow.
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