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.
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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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…
The outside temperature was cold, just 15 F, but the sun was shining, so I decided to forgo my elliptical machine and instead walk down our country road. I checked on my husband, Todd, to make sure it was OK to leave, and then slid into my snow pants and…
There are both big and little losses that come with ALS, for the person with the disease and their family. Each stage of the disease brings something new to grieve. When my husband, Todd, was diagnosed in 2010, one of our biggest losses was the future that we…
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…
My husband, Todd, finally got in his new wheelchair! After it was delivered in September, I wrote that we needed to have the attendant control reprogrammed. That finally happened, and we’ve been fine-tuning the chair over the past week. Although both are the same brand, there are differences between…
Last night, I had a dream in which my husband, Todd, did not have ALS. It was a bit of sweet respite from my day-to-day life, and I woke up missing that old version of us. In real life, I am Todd’s caregiver. He is completely paralyzed and needs…
Last weekend, I left my husband, Todd, with a caregiver while I attended our daughter’s dance performance at Northern Michigan University. “Love Is A Burning Thing: A Johnny Cash Ballet” was the CO/LAB Dance Company’s tribute to Johnny Cash, featuring a number of his songs. The energy in…
Three years after my husband Todd’s ALS diagnosis, a friend put me in touch with another family who had been dealing with the disease for about a year. I listened as the adult daughter told me how her mom, who had ALS, couldn’t move at all, and how her…
Three years after my husband, Todd, was diagnosed with ALS, I was learning how to live with the ongoing ache of grief. I found myself crying as I watched our then 7-year-old daughter, Sara, ice skate in her program’s spring show. She and the other girls were wearing sparkly…
Every step of an ALS journey is difficult, but somehow we’re wired with the ability to forget much of the pain and remember the good. I wrote last week about our current challenge of finding nighttime caregivers. After getting all of the shifts covered, one of our caregivers…
“I feel like crying,” I wrote in my journal after a second caregiver decided to leave in December. “I can do 18 hours a day on duty, but I need to sleep sometimes.” For a few months, we had had a reliable team of nighttime caregivers for my husband,…
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