Joyful Sorrow - a Column by Kristin Neva

Dependency is a difficult reality of ALS. My husband, Todd, fought to preserve his independence as long as possible, but he lost each battle to progressive disability. When his legs became noticeably weak, he got a walking stick, and then a scooter, followed by a power wheelchair. He lost…

I feel compelled to seek out beauty and create a warm home, perhaps partly as an antidote to the difficulties we experience because my husband, Todd, has ALS. In a way, choosing to celebrate feels like a revolt against this devastating disease. A little over a week ago, I…

Because life with ALS only gets harder as time goes by, prayer has felt increasingly unproductive for me. And after more than a decade of watching my husband, Todd, suffer from the disease, my prayers have been full of dismay. “God, are you there? Don’t you care? Don’t you…

I filled the last page of another journal and then reread some of the entries over the last year. I had written about the fear I felt when my husband, Todd, who has ALS, stopped breathing and I had to restart his lungs; the feelings of sadness…

Family fun has gotten harder to come by since my husband, Todd, was diagnosed with ALS and the disease has progressed. Initially, Todd could still walk, but his legs tired easily, so we needed to pace ourselves. It got increasingly difficult to go out as his muscles weakened, but…

My husband, Todd, and I had a stressful night last week. While his nighttime caregiver was getting him ready for bed, Todd felt a rattle in his chest. He hoped that it would settle down once he was in bed. He’s often able to clear his lungs himself…

Last weekend, my husband, Todd, and I watched the movie “The Electrical Life of Louis Wain,” about an eccentric artist in Victorian England. Wain’s comical and endearing illustrations of cats changed people’s perceptions of them and led to them being more accepted as household pets. From the description,…

I sometimes dream my husband, Todd, is calling for me at night. I wake and check the time. If it’s after 5 a.m., I know his nighttime caregiver has left, so I check on him to see if he needs to be turned, have a limb adjusted, or an itch…

Looking back over the course of more than a decade of my husband, Todd, having ALS, I’m struck with how hard we worked to maintain some sense of normalcy, even after he was paralyzed. We joined a Bible study with a small group of people from our church, and we…

We had another close call last week. I was out mowing the fields while a nursing assistant was caring for my husband, Todd. She was one of his first caregivers after he lost his ability to walk and bathe himself due to ALS. At the time, Todd still…