Finding Necessary Distractions From the Challenges of Life With ALS

It’s nice to have distractions from the difficulty of life with ALS, so I was in a pretty good mood for the past week because my brothers, sister-in-law, and nieces were visiting from out of town.

But one afternoon, they all headed out to a retreat center about 45 minutes from our house, on the shore of Lake Superior. My mother and our kids went with them while my husband, Todd, and I stayed home because he has ALS and is paralyzed.

I was sad we couldn’t go and thought about how much we’ve lost in the last couple years. We made the drive out there two summers ago and had a nice evening watching the kids play on the beach.

Todd and Kristin by Lake Superior in northern Michigan in 2020. (Courtesy of Kristin Neva)

Life was pretty hard even then, but with ALS, it only gets more difficult. Now, that outing is just too much to navigate. Todd’s neck is weak, and he’s using noninvasive ventilation to support his breathing, so it’s hard for him to go anywhere.

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I was still feeling sad as I got caught up on household chores. ALS is such a brutal and disheartening disease.

When I’m feeling down, walking usually improves my mood, so I checked on Todd, who was set up on his computer with access to his phone so that he could call or text if he needed me. I downloaded a couple of podcasts and headed out for a walk around the fields near our home.

I first started listening to “Stepping Off the Path of Anxiety,” from the Happiness Lab, by Dr. Laurie Santos. Her guest, psychotherapist Andrea Wachter, discussed the power of learning to be in the present. Well, the present was what was bumming me out. As I listened, I felt more discouraged.

I tried another Happiness Lab podcast with an intriguing title: “Embracing Sadness in the Pursuit of Happiness.” Journalist Helen Russell, author of “How to Be Sad: Everything I’ve Learned About Getting Happier by Being Sad” and other books, joined Santos to explain how our view of sadness needs to change. This one resonated. I was experiencing appropriate emotions in response to a sad situation. It helped to have my feelings validated, and I felt a little better.

And then I found some wild strawberries that cheered me up.

My mood brightened enough to give a good friend a call. We chatted as I walked. I talked a bit about my sadness, and we discussed some other hard situations in our world, but we also laughed together about other things.

I returned home and checked on Todd again. He was content, working on a project. The family returned, and I had a busy evening prepping and hosting dinner — too busy to focus on the hardness of life with ALS.

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