Joyful Sorrow - a Column by Kristin Neva

patients, strength, bittersweet 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.

Just Another Day in Life With ALS

I inspected the fish through the curved glass of a refrigerated display case. Wild-caught Lake Superior whitefish and trout — both raw and smoked — lay in metal trays. “I’d like that piece of smoked trout in the middle. Underneath the top one,” I specified. I picked a plump…

Documenting Love to Help It Live On

I watched a tribute video to a husband and father who recently died from ALS. Tears filled my eyes over tender moments of a toddler kissing and hugging his dad, jumping on his lap, and driving matchbox cars on his head while the dad smiled. The man radiated love for…

When You’re Unequipped for Difficulty

“We were ill-prepared and unequipped for the hike,” I told my husband, Todd, after returning home. The kids and I went to see Douglass Houghton Falls in Michigan’s Upper Peninsula with my friend, who was visiting from out of town. Todd stayed home because he has ALS and is…

I Hate the Feeling of Knowing What’s Coming

I pleaded. I bargained. I threatened. But it was no use. My dog would not back away from the woods behind the shed, where he had been sprayed by a skunk just two weeks earlier. I was more panicked when he got skunked than I was now. I frantically searched…

Building a Care Team for the Marathon of ALS

Help has come and gone over the past decade since my husband, Todd, has had ALS. When it became too difficult to travel four hours away to an ALS clinic, Todd went to a local neurologist who managed his care. After a couple years, his neurologist left the area, and…

When Anger Manifests as Road Rage

Driving in our small town is usually pretty chill. People let each other in and don’t cut one another off. But right now, the roads are busier than normal. It’s construction season, and we have many out-of-town tourists. People come from big cities, where they live with more stress and…

A Taste of the Past

When my husband, Todd, was diagnosed with ALS, I grieved the loss of our dreams and our future together, but I had no idea how hard daily life would become. ALS caregiving spouses end up taking on a lot of roles. We advocate for resources and battle insurance companies.

The Many Challenges of Getting Out

Normally, we live much of our life at home. My husband, Todd, has ALS and is paralyzed. He spends his time in his wheelchair set up at his computer, and I can’t go far in case he needs help. Our traveling days are over, and we can’t visit most…

Time Travel With ALS: What If We Could?

I’ve been thinking about time travel after watching a couple movies with my husband, Todd, who has ALS. We enjoyed “About Time” during one of our date nights and “The Time Traveler’s Wife” during another. Both movies have subplots that involve love, marriage, and children. If time travel…