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…
Joyful Sorrow — Kristin Neva
Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.
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A couple months ago, I planted zinnia and strawflower seeds in two plastic bins and set them in the sunlight under our patio window in my dining room. I’ve grown vegetables from seeds in the past, but never flowers. Vegetables feel practical because food is necessary to sustain life, while…
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…
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…
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