I learned to really cherish holiday moments when ALS appeared

My late husband, Jeff, loved holidays. He was a sentimental person hidden within a sometimes gruff exterior, and his sweet side was never more evident than on special occasions. He celebrated Valentine’s Day, birthdays, and Thanksgiving with reverence, making each day meaningful with unique traditions, sumptuous meals he’d made from scratch, heartfelt cards, and thoughtful personal gifts.

At Christmas, he started preparations early, literally decking the halls with holiday decor weeks in advance, burning Christmas candles, and hanging stockings for his two adult children, me, and our dogs. I loved coming downstairs in my pajamas on Christmas morning to the scent of his cooking and the sight of him enjoying some peaceful, quiet moments before the day got busy. He helped me recapture and enjoy the magic of Christmas that I’d felt as a child.

Christmas in 2018, though, was different. Jeff’s ALS diagnosis had come about a month earlier. We were in a state of shock, but we observed Christmas nonetheless. Jeff’s symptoms were still relatively mild at that time, and he was able to walk, speak, and eat orally. We were still processing his diagnosis, which felt unbelievable, but I remember both of us feeling hopeful that we had many more holidays ahead. We reminded ourselves that some people had lived with ALS for many years, and we were prepared to fight for that.

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When I reflect on that holiday, I can see that we were using it to regroup and claim some much-needed normalcy in a season where every day brought scary news and fear. Jeff hadn’t yet shared his diagnosis beyond close family and friends, and we were living in a finite sliver of time between knowing of his ALS and actually beginning to live with it.

When I look at pictures of us that Christmas, I see faces slightly relaxed after months of stress, and remember feeling grateful to have something to focus on besides the unwelcome intrusion of ALS into our lives. We hosted a small gathering for family at our home in Annapolis, Maryland, doubling down on traditions like trimming the tree, making the house feel cozy and warm, and giving modest but meaningful gifts.

Unfortunately, Jeff’s ALS progression was faster than average. We spent the following year living hard, traveling, having adventures, and making memories as voraciously as we could despite a relentless disease that was quickly robbing Jeff of his ability to walk and speak. We saw the Rolling Stones, Queen, and Bob Seger in concert, and rafted down a gentle part of the Athabasca River in Canada. We rode a gondola to the top of a mountain and caught our limit of rockfish in the Chesapeake Bay. It was a year in which we learned the meaning of moments and the value of time, and began to understand that nothing is promised. It was the most difficult, yet the most beautiful, year of my life, because we still had him.

Christmas in 2019 seemed sure to be very different from those of the past, as we were experiencing some of the most challenging days of Jeff’s disease. He was uncomfortable in his power wheelchair, and we were still getting settled into a new accessible home. He could no longer cook, light candles, or physically make the preparations he’d cherished during previous Christmases. I worried about making the holiday special for him and his kids.

I need not have worried, though, because that year, Jeff taught me something he’d known all along — that the magic of Christmas, or any holiday, isn’t in the decorations or the meal, although we had those things. It’s about the individual moments that bring meaning — the walk outside with Jeff’s daughter and our dogs in unseasonably warm weather; the bright sun shining on us all as we crossed a river boardwalk; the Budweiser Clydesdales laying over at a nearby farm; a handler taking one out to greet Jeff when we visited, the giant, gentle horse nuzzling him all over. Meanwhile, Jeff took time to privately tell each of us how much he loved us, something he did often while living with ALS.

In this way, and maybe without even knowing it, Jeff kept Christmas special both that year and in the years that have followed since he died in May 2020. ALS is a cruel disease that takes so much from people. But I learned from Jeff — not just at Christmas, but every day — to keep living despite the adversity, and to keep my eyes open for the magic. We can create it, we can be open to seeing it, and we can share it. All of these things are gifts, part of the legacy that we and our loved ones can leave.

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