Finding beauty in the little things while living with ALS

My husband, Todd, and I enjoy watching chickadees flit from a feeder that hangs from a mountain ash tree behind our house to one of the branches, where they crack the shells and eat the sunflower seeds.

“Let Comet out,” Todd told me one morning. “There’s a squirrel in the tree.”

I opened the door to let out our 80-pound goldendoodle, and he spotted the red squirrel immediately. He barked and circled the mountain ash while the squirrel jumped from branch to branch. Comet put his paws up on the trunk, stretching to reach his prey but falling short. He backed up and watched it from a distance, diligently tracking its movements at the top of the tree.

Todd and I watched the excitement for a full five minutes while he drank his coffee.

It was the highlight of our day. Life often feels mundane being stuck at home because of my husband’s ALS. He’s not healthy enough to easily get out of the house, and I can’t go far because he frequently needs my help. I imagine that for Comet, working to guard the birds’ food was a welcome break from his usual lazy lying around. Winters in Michigan’s Upper Peninsula are long for everyone.

A finch and a chickadee. (Photo by Kristin Neva)

Comet turned his head away from the tree, and the squirrel seized the opportunity to leap to the snow-covered ground and run toward a stand of Fraser firs some 40 feet away on the side of the house. Comet gave chase.

Comet returned to the back of the house a few minutes later without his prize and sniffed around the base of the tree. I opened the door and affirmed him for a job well done. He trotted into the house with his head high and tail wagging, and I gave him a tidbit of ham to reward him for his good work. He was proud and purposeful.

We all need purpose.

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September 22, 2022 Columns by Kristin Neva

How We’re Living With Purpose in Our Struggles With ALS

A few years ago, Todd talked in one of our ALS 411 videos about how he kept busy with projects, such as being on our church’s communication team and helping with graphics, preaching sermons occasionally, writing on our blog, and making videos. He also talked about how he viewed his purpose as helping our children cope, and how he tried to put off calling me at night when he was in pain so I could sleep a little longer. He challenged others to find a purpose, even if it’s something as simple as having a pleasant disposition in the face of suffering.

Since making that video, Todd preached his last sermon when he became winded, and he has run out of things to say on the blog. We don’t make too many videos anymore, either. Finding purpose has become harder and harder as ALS marches on. At a certain point, it’s about all we can do to manage our daily life.

Sometimes there isn’t much we can do to make our situation better, but there are certainly things we could do to make it worse. By practicing kindness and perseverance, we make things better than they could be.

“Is it pitiful that watching Comet tree a squirrel is the highlight of our morning?” I asked Todd.

“I think it would be the highlight of anyone’s morning,” Todd said, and we laughed.

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