Joyful Sorrow - a Column by Kristin Neva

On Memorial Day, my mom, the kids, and I visited Lakeside Cemetery in Hancock, Michigan. My mom and the kids left in time to attend the Memorial Day service. I arrived late, just as it concluded, because I needed to help Todd in the bathroom and then…

A few years before my husband, Todd, was diagnosed with ALS, he baked a cake for a church fundraiser with one hand while our infant daughter slept on her stomach across his other forearm, her head cradled in his hand. It was impressive enough that he could make the traditional…

As I waited for the postmaster to bring my package to the counter, I tried to think of what I had ordered. Nothing came to mind. He set the brown box on the counter and said, “Here you go,” through his fabric mask. The package, measuring about 12 inches by…

For a couple years after my husband Todd’s ALS diagnosis, I sought companionship in books written by people with ALS or their spouses. I read half a dozen stories, trying to wrap my mind around how we would navigate the rocky, unfamiliar landscape of the life…

With my gym closed, I’ve been getting my daily exercise by cross-country skiing. A calm happiness washes over me at about the 2-kilometer mark, after my heart rate is up and endorphins flood my brain. I take in the beauty of the woods. Soft snow, the vestige of winter,…

Since my husband has ALS and is paralyzed, his life is much the same under COVID-19 stay-at-home orders. Todd still spends his days on the computer, except now there are many more people online, so he feels more connected. However, the kids and I have had to find a…

When someone asks how I am in passing, I know the script: “I’m fine. How are you?” Sure, the question and response are meant to be pleasantries in our polite society, but since my husband has ALS, some days the question feels weighty. It stirs smoldering emotions, reigniting the…

The other morning, I woke up to find a note on my husband’s wheelchair cushion: “Buttercup, please cook the sausage. Love, Todd.” He was reminding me of the bratwurst I had pulled out of the freezer a couple days before. His arms haven’t worked in years because he has ALS,…

Since my husband was diagnosed with ALS a decade ago, we’ve adapted to this difficult life in ways I never would have expected. After leaving rural Michigan for college in Chicago, and then living in Milwaukee, I didn’t think I would end up living in a handicap-accessible house across the…

When someone asked my husband how he is doing in light of COVID-19, Todd replied, “Our life isn’t that much different. Now everyone else is dealing with what we have been living with for years.” There are similarities between life during this pandemic and life with ALS. 1. We already…