Author Archives: Kristin Neva

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…

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…