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.

The Limits of Marriage

Eighteen years ago, Todd and I joined our lives in marriage, vowing for better or worse, in sickness and in health, and we went forward together as friends and allies. Jesus taught that joining in marriage is “two becoming one flesh.” Indeed, I felt oneness with Todd. We liked…

Getting Our Affairs in Order

In the days after my husband, Todd, was diagnosed with ALS, I was overwhelmed with what lay before us. But Todd went into preparation mode. “We need to sell the house,” he said. “We need to move near your family.” It took more than a year for the house to…

Does It Ever Get Easier?

“Does caregiving for ALS ever get easier?” I pondered the question someone had posted on social media. I couldn’t sleep for days after my husband, Todd, was diagnosed. I was consumed with anxiety and fear for the future. How was I going to parent our children as a single mom?…

What Happens When We Compare Our Lives With ALS

When our kids started school this fall, I had a sense of relief that my husband, Todd, made it to see our youngest begin middle school. He’s now at the same school campus as our 15-year-old daughter. I’m glad we’re dealing with a school transition while Todd is still with…

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…