Joyful Sorrow - a Column by Kristin Neva

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…

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.

My 14-year-old daughter woke me up at 4:45 a.m. “Do you hear that?” “Hear what?” I asked groggily. “You don’t hear anything?” Panic rose in Sara’s voice. “No.” I sat up. “You don’t hear that?” she said, just after I too heard a high-pitched chirp. “Yes,” I said. “It sounds…

After three weeks of my husband, Todd, being cloistered in our home with a cold, we ventured out Saturday for Michigan Tech’s last home hockey game of the season. Our Huskies took on their archrival, the Northern Michigan Wildcats. Games between the two teams usually sell out because…

I didn’t react when a spine care specialist mentioned ALS as a possible cause of my husband’s weak arm, because I didn’t know what ALS was. Todd and I talked about daily life during the drive home from the appointment, and it wasn’t until later that evening when the kids…

One of my biggest concerns is how my husband’s ALS will affect our children. They were both under 5 when Todd was diagnosed and while they are growing up, their father continues to lose strength. A couple of years into the disease, I was fastening Todd’s seat belt as our…

I’m not the same person I was 10 years ago, before my husband, Todd, was diagnosed with ALS. The brutal reality of the disease has changed me in three ways: 1. I swear more I’d never done much swearing. When I was 15, I had just gotten my driver’s permit…

A month after my husband, Todd, was diagnosed with ALS, I wrote in my journal: “Squeezing in memories is bittersweet. Last weekend, we took Sara and Isaac to the beach. The sun sparkled off the water and Isaac pointed at the seagulls flying over Lake Michigan. I took pictures…