As I prepared to shower my husband, Todd, who is paralyzed due to ALS, I asked his smart speaker to play “Hurt” by Johnny Cash, and after that finished, I asked it to play similar songs. As I shaved Todd’s head, a song I’d never heard before came…
Joyful Sorrow - a Column by Kristin Neva
In a recent episode of the “Hidden Brain” podcast, behavioral scientist Dave Evans discussed radical acceptance. He described his 69-year-old wife, Claudia, receiving a terminal cancer diagnosis and how they chose to skip the denial, anger, and depression that often come with grief. They moved straight to acceptance, allowing…
Getting out of the house is always a challenge because my husband, Todd, has ALS and needs care almost 24/7. I never know if I’ll make it to my Monday night ukulele group. When I do, I’m usually rushing to feed Todd, help him in the bathroom, and get…
After my husband, Todd, got ALS and I became his caregiver, I turned to reading and writing as a way to cope. Reading helps me make sense of life, or sometimes just step outside of my life for a while. Writing helps me sort through what I’m thinking and…
When we got our goldendoodle, Comet, as a puppy almost 13 years ago, my husband, Todd, walked him around our property line to train him to stay close to home. After Todd became unsteady on his feet, he tooled around our yard on a scooter with Comet riding between his…
I brought “Some Bright Nowhere” by Ann Packer with me to Florida as my spring break beach read, but it wasn’t exactly light material. It’s a novel about a woman dying of cancer. Columnist Kristin Neva’s spring break beach read was “Some Bright Nowhere” by Ann Packer. (Photo by…
I left my husband, Todd, at home in Michigan last week while I flew with our teenage son to Florida during his spring break. Getting away takes planning and requires a lot of help at home while I’m gone. For me to be able to leave, we had to assemble…
When my husband Todd’s new power wheelchair was delivered, he tried a device that allowed him to control it with his eyes. It included software running on a tablet computer and an eye-tracking system mounted to the front of the chair. He found the system frustrating because he was…
My husband, Todd, and I work on New York Times puzzles while we eat breakfast. I sit next to him and feed him bites of his breakfast while I eat, too. One puzzle we work on is the Spelling Bee, where we earn points by forming words from seven different…
After living with my husband Todd’s ALS for more than 15 years, shouldn’t I be better at navigating this disease? Author Malcolm Gladwell popularized the idea that mastery comes after 10,000 hours of doing something. If that’s true, then surely I should have ALS figured out by now.
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