When Prayer Feels Unproductive, I Long for a Better World
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,…
Joyful Sorrow — Kristin Neva
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.
Featured Post
Advocating for Congress to save Medicare’s telehealth coverage
It’s become exceedingly difficult for my husband, Todd, to leave our home now that he’s in an advanced stage of ALS. His neck is weak because of disease progression, and he uses noninvasive…
Read more
Revisiting Both Sad and Happy Memories of Life With ALS
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…
The Challenge of Finding Fun Family Activities as ALS Progresses
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…
A Stressful Night of Dealing With My Husband’s Breathing Difficulties
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…
Our Date Night Movie Hit Too Close to Home
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…
Dreaming of a Life Where My Husband Doesn’t Have ALS
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…
As an ALS Caregiver, Activities and Downtime Require a Mental Shift
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.
Another Close Call Reminds Me of What We Still Have as a Family
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…
As an ALS Caregiver to My Husband, I Can’t Just Call in Sick
“Two are better than one,/ because they have a good return for their labor:/ If either of them falls down,/ one can help the other up./ But pity anyone who falls/ and has no…
Having Grit Matters in Choosing Medical Interventions With ALS
My 16-year-old-daughter, Sara, watched a TED Talk by Angela Duckworth on grit in her AP Language class. Sara was not impressed. “I don’t want to have grit,” she declared. Many of her high school…
How I’m Finding Solace in Creative Work
On my daily walk, I take a detour from the field and into the woods because I’m on the hunt for birch bark and pine cones. It’s the season for collecting natural accents to…
Trying to Prepare for the Future: It’s Worth the Thought Now
After college, I worked at an after-school youth program. I loved my work, and I made ends meet on my modest salary. I met and married my husband, Todd, who had a good job,…
