Finding meaning together in life after 16 years with ALS

My husband, Todd, and I celebrated our 23rd wedding anniversary this week. We’ve spent 16 of those years with ALS since Todd’s diagnosis in 2010.

I’ve been thinking recently about how we have found meaning within this difficult life we’ve been living for so long.

Todd and Kristin Neva are shown in 2003 and in 2026. (Courtesy of Kristin Neva)

After Todd’s diagnosis, we wrote a memoir about our first year with ALS as we came to terms with the diagnosis. Todd wrote about the joy we found in designing an accessible home. We figured out what accessible features he would need as we anticipated the disease progression, and found ways to add character to the house without breaking the bank.

Todd wrote, “It was surreal planning for my eventual full disability and paralysis, but at the same time, it was fun and rewarding because I was being creative and moving forward with life.”

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Moving forward

Over the years with ALS, Todd ended up expressing his creativity in other ways. When he still had a strong voice, he preached sermons at our church and others. He created graphics for our church and designed the covers for my Copper Island Novels. He also helped me edit the books.

He’s also been the visionary for projects around our home, most recently coaching our son on putting up a pole with a solar light at the end of our driveway so his night caregivers can more easily find our driveway on our dark country road.

I’ve had my writing as a creative pursuit — first our memoir, then three novels, and now these weekly columns.

I’ve also found joy in crafting, such as making Christmas wreaths that I’ve sold at craft fairs. Most recently, I’ve been playing with dried flowers, making cards and art.

I’ve also found joy in gardening this summer. My zinnias are beautiful, and I’m still hoping my strawflowers will bloom.

Our most meaningful pursuit has been raising our two children. I’m thankful that Todd has been able to help me coparent and see them grow up. He’s defied the odds and saw our daughter graduate from high school. Perhaps he’ll still be here in two years to see our son graduate, too.

Each year, I have wondered if the anniversary we celebrated would be our last. The same thought crossed my mind this year, but now I’m also considering how we’ll manage the disease if we have years left. How will we fund his night care? How will we find meaning as our children launch into adulthood? What does a meaningful life look like when one is homebound?

Sixteen years ago, Todd wrote about the joy he found in being creative and moving forward with life. I’m pondering what that looks like now in this later stage of life and ALS.

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