Finding beauty in the little things while living with ALS

Purpose looks different for this couple after almost 13 years with ALS

Kristin Neva avatar

by Kristin Neva |

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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.

Two small birds, a finch and a chickadee, perch on a snow-covered bird feeder hanging from the branch of a tree as snow falls around them.

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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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.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.


Cathy MacLeod avatar

Cathy MacLeod

Thank you for writing each week with such thought and compassion. My husband died last August from ALS after nine years with the disease.Your experiences are so similar to what mine were. Rod lost his ability to speak very early on, but spoke from his heart every day that he could. Cathy

Shane Spiegelman avatar

Shane Spiegelman

Feels authentic. Humor gets us through a lot of rough moments in life. Thank you for sharing.

Albert kimmey avatar

Albert kimmey

I have been diagnosed with als for about 7 months now I enjoy reading the things you write about I have my days but I try to live on thankyou


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