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.

Taking Care of Unfinished Business

“That’s the one project I wish I could have finished,” my husband, Todd, said while looking out a window at Comet’s doghouse. He had expressed similar sentiment on other occasions over the last few years. After Todd was diagnosed with ALS, we sold our house in southeastern Wisconsin and built…

Just Showing Up Is an Accomplishment

Years before my husband was diagnosed with ALS, I coordinated a tutoring program in Milwaukee. Many of the children and teens I worked with lived with stress and instability in their homes and neighborhoods. For some kids, just consistently showing up to school and the tutoring program was an accomplishment…

Train Your Eyes to Find the Light

Weeks after my husband’s ALS diagnosis, we were still in shock, but we mustered ourselves for a family outing on my 33rd birthday. We planned the day around our baby’s nap schedule. With only one weak arm, my husband, Todd, drove me, our 4-year-old daughter, and 11-month-old son to the…

Snapshots of Life With ALS

“Thank God I didn’t have to cough this weekend,” my husband, Todd, said after his parents left. They had been visiting us from Minnesota. A couple months ago, his mom called as I was returning from the grocery store. “Todd can’t breathe. He needs help,” she said. He was doing…

Searching for a New Map

“I keep pulling it out — the old map of my inner path,” Joyce Rupp writes in her poem “Old Maps No Longer Work.” I was introduced to Rupp’s poem on a spiritual retreat five years ago. Her words resonated with me then, five years past my husband…

Expanding World, Shrinking World

When I was a child, my elderly great-aunt Martha joined my family every Christmas Eve to participate in gift opening. I felt bad that she only got one present while my brothers and I received so many. But she seemed happy with the pair of slippers or homemade ornaments my…

Making Mental Notes While He’s Still Here

After our second child was born — back when my husband, Todd, had an undiagnosed weak left arm — we purchased a used minivan. We found the van on Craigslist and drove two hours to purchase it. Six months later, Todd was diagnosed with ALS. We made plans to…

Learning How to Help from 5 Phone Calls

Nine months after my husband, Todd, was diagnosed with ALS, he entered a social media contest with a $100,000 grand prize to use to fulfill a dream. Contestants with the most votes advanced to the next round. Todd’s dream was to build a handicapped-accessible home near my parents. The home…

An Old Dog Teaches Me New Tricks

I found a walking buddy, and he’s teaching me how to live with my husband’s ALS. When my gym closed, I turned to cross-country skiing every day. When the snow melted, I took up Nordic walking around our fields. One day, returning from my walk, I went to check…

Hanging Up the Keys and Other Tough Decisions

I thought my husband, Todd, should quit driving long before he was ready to hang up the keys. When ALS had weakened his left arm and right hand, he would get gas from a full-service station. I questioned whether he should be driving when he couldn’t pump gas for himself.