When my two teenagers came home from school, I had them sit down to listen to the first five minutes of a recent “Freakonomics Radio” podcast episode, “Swearing Is More Important Than You Think.” The host, Stephen Dubner, is struck that there seems to be more swearing now than…
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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Wake me up if Todd is in distress,” I said to his nighttime caregiver. “Of course,” she replied. It’s not something I typically say to one of my husband’s regular caregivers, but I felt on edge. I said good night and tried to get some rest, but my mind was…
Last weekend, my 13-year-old son, Isaac, and I spent about five hours replacing transition strips between my husband’s bedroom and the hallway, the master bathroom, and his office. When we built our accessible home over a decade ago, we put hard flooring throughout the house in anticipation that my…
My husband, Todd, and I used to enjoy heading out on adventures, whether it was driving an hour to Chicagoland for an architectural tour of homes designed by Frank Lloyd Wright or flying halfway around the world to Taiwan and visiting a traditional tea house in a small mountain village.
The other evening, our daughter, Sara, read “Bread and Jam for Frances” aloud while I finished feeding dinner to my husband, Todd. He used to read this children’s book about a young badger with human qualities to Sara when she was little. In the book, Frances has an…
The other day my husband, Todd, told me he forgot to ask the caregiver to spray out his clicker tube for his HeadMouse. Because he’s paralyzed from ALS, he clicks his computer mouse by sipping and puffing on a straw, and we only need to replace it once…
My husband’s nose wouldn’t quit bleeding this past Sunday morning, preventing him from using his noninvasive ventilator. Todd is paralyzed from ALS, so he sat in his power wheelchair in front of the bathroom sink as I went to work. I packed his nostril with wadded up…
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…
On the ski trail the other afternoon, I was feeling discouraged. I hadn’t slept well the previous couple of nights and had a low-grade headache, but I willed myself to keep going. Exercise is good for my body, and being in nature usually soothes my mind. They’re two of…
While in town the other day, I ran into an old friend. My husband, Todd, and I had gotten to know her and her husband when they first started attending our church. We had invited them over for dinner along with a few other families. Then we met weekly with…
Thinking of gift ideas for my husband, Todd, has always been a challenge — especially since he’s been paralyzed by ALS. Some of my gifts to him haven’t gotten much use, like a heated jacket that he found too hot. He used it a couple times when we went…
If we’d anticipated my husband, Todd, needing nighttime caregivers, we would’ve designed our accessible house differently, but we probably wouldn’t have been as happy with it. After Todd was diagnosed with ALS in 2010, he told me, “We need to sell the house. We need to move near…
More than a dozen years ago, my friend Jana helped me process my grief after my husband, Todd, was diagnosed with ALS. She and I walked around our neighborhood, pushing our babies in strollers as our toddlers rode their bikes. Jana listened and didn’t offer platitudes. We now…
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