Making Peace with the Waves of Emotion that Come with ALS

After my husband, Todd, was diagnosed with ALS, we battened down the hatches to prepare for the coming storm. We moved to be near family in the Keweenaw Peninsula, a sliver of land that stretches into Lake Superior.

The big lake is an apt metaphor for life with ALS. As Gordon Lightfoot sang in “The Wreck of the Edmund Fitzgerald, “The lake, it is said, never gives up her dead.” It is indeed a dangerous lake that has claimed many ships. At times, 20-foot waves crash onto the shore. On other days, it is serene enough to skip rocks across its glassy surface.

The perils of Lake Superior mirror the ride with ALS. If you were to read my personal journals over the past decade, you might think I’ve lived a tortured life. Writing is one of the ways I process my thoughts and blow off steam, so I usually write when I’m mad, sad, or trying to work through life’s existential questions. It’s as if an ore boat captain only made log entries on stormy days.

After the new year began, I skimmed the previous year’s journal and decided that I should make a point to write down happy moments, because they also are a part of this life with ALS. It has its ebbs and flows and I would get a different perspective depending on the day.

An elderly woman, whose husband also has ALS, once told me about some of her experiences much earlier in her life. “I made it through those times. We can handle ALS.” She felt confident at that moment. On another day, she told me, “I’ve lived through a lot of trauma, but nothing comes close to how horrible this disease is.”

Another woman reflected on the years with her husband’s ALS, recognizing how it had negatively affected her health and her children’s emotional well-being. On a different day, she reflected on the good memories made during those difficult years.

The perspective can shift from one minute to another. In one moment, I feel rage at the hand we’ve been dealt. In the next, I feel grateful that any of us are here to experience this miracle of life.

Which perspective is true? Both are.

Recently when I feel down, I’ve made a point to mentally rate my despondency.

If utter despair is a zero and euphoria is a 10, there are moments where I am down around a two. I’m thankful that I haven’t been at zero yet, and I realize that if I wait I don’t stay at two either. Perhaps I’ll need to write, cry, scream, exercise, or sleep, and then my emotional state creeps back up to five or six. Sometimes I’m even at seven or eight when the sun is shining, I celebrate our kids’ accomplishments, or Todd and I laugh together.

I never make it to nine or a perfect 10 anymore. It would take a miracle or a cure for ALS for that to happen. But when I feel down, it’s helpful to remember that the extreme sadness, grief, and anger will lighten, though it never goes away completely.

This rhythm of emotion is like the changing temperament of Lake Superior, at times fierce and crashing, and then the lake stills and we play in its cool waters. Just as I would never expect the big lake always to be calm, I must accept my changing emotions as a natural part of being human.

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