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.

Granting Myself Permission to Sit With My Grief

It’s hard to find guides for the grief that accompanies a long, progressive terminal illness. Loss is often talked about as an event that happened in the past. It’s difficult to process grief when you know you haven’t reached the bottom yet, when the losses keep coming. In Brené Brown’s…

Finding Beauty in the Dark of Winter

“I forgot how dark it is all the time,” my brother commented when he visited us in Michigan’s Keweenaw Peninsula over the holidays. The sun was trapped behind cloud cover for the entire week he was here, and some years, it only peeks out occasionally during January with near daily…

Entering Into the Full Human Experience

This Christmas season, we reflect on Jesus’ entering into this beautiful, yet broken world. God incarnate entered into human life where he would know both love and betrayal. Fellowship and forsakenness. Hospitality and hostility. He experienced the joy of eating and drinking with close friends. He celebrated at a wedding…

Craving Laughter in the Midst of Sorrow

It’s time again to send our annual Christmas letter and picture card to our friends and family. Since my daughter could talk, I’ve kept a list of cute things the kids say throughout each year. I pick the best to include in our letter. When Sara was 2, we…

A Physical Presence in Our Lives

On Saturday morning, I lay cuddled next to my husband, Todd, in bed. I could feel his thigh muscles pulse against my leg, misfire after misfire. I wished I could will the fasciculations to stop. When I washed him and changed his shorts, I was struck by how thin his…

Growing Up With a Parent’s Illness

I cried as I listened to an episode of the “Everything Happens” podcast. Writer Samantha Irby described growing up with sick parents. When she was 9, her mom was diagnosed with multiple sclerosis, and her dad struggled with heart problems for years. They both died when she was…

How ALS Affects the Hierarchy of Needs

I’ve written before about how the world has been shrinking for my husband, Todd, and me. Some activities, such as going on vacation or visiting people in their homes, became too difficult, even before social distancing mandates, due to Todd’s worsening ALS symptoms. But we still made an effort…