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.

When Positivity Becomes a Problem

Last week, we had an early snowfall, even for Michigan’s Keweenaw Peninsula. Snow frosted the tips of trees and blanketed the grass, leaving small bits of green peeking through. I posted a picture on social media and wrote, “It’s beginning to look a lot like Christmas. Gearing up for…

We Are Both Patients

I asked my husband, Todd, why he thought our relationship worked as well as it does. I was preparing to write a column about how we still love each other through the stress of living with his ALS for a decade now. It would be understandable for him to…

Our Bittersweet Family Life

We had an unseasonably warm fall day while Todd’s sister was visiting from out of state last week. I asked Todd if he’d want to head down to McLain State Park just 15 minutes from our home. “I suppose,” he said somewhat reluctantly. He wanted to be social even…

Creativity Is a Life-giving Activity

We had snow in the air last week, reminding me that Christmas is coming, and with it, one of my favorite creative projects: wreath-making. I’ll start clipping the Fraser fir boughs and assembling the wreaths in November, but in the meantime, I’ve been gathering pine cones. I’ve been wiring…

Finding Strength to Keep Going

On most days, I walk three laps around the fields on my mom’s property next to my home. My stress diminishes as I drink in the natural beauty while exercising. I stop and smell apple blossoms in the spring. I pause to snack on early summer sugar snap peas…

Finding My People

I cried again as I read yet another social media post by a caregiving spouse whose husband just died from ALS. ALS kills someone every 90 minutes, and I’ve made online connections with many caregivers, which means I frequently read of somebody’s loss. I cry hardest when another mom…

The Burden of Knowing the Future

Lulu Wang’s film “The Farewell” is based on an actual lie. The 2019 comedic drama looks at a family’s decision to keep their matriarch ignorant of her stage IV lung cancer diagnosis with a prognosis of death in three months. Billi, a Chinese American woman, travels to China for…

Gaining Perspective Through Journaling

Perspective can be hard to come by with ALS, but writing has helped me keep my head above water. I’ve kept a journal since I was a kid. I wrote my way through teenage angst, my musings during my college years, the challenges of trying to help the teens I…

Now, Our Favorite Restaurant Is Inaccessible to All

My husband, Todd, and I celebrated our 17th wedding anniversary in late August with a date at Fitzgerald’s, a restaurant built on the shore of Lake Superior in Eagle River, Michigan. A permit to build on a beach would never be approved today, but it could be done in…

Friends Who Can Handle Chronic Illness

In his book “Out of Solitude,” Henri Nouwen writes, “When we honestly ask ourselves which persons in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch…