Wife Tells of Husband’s ALS Struggles

Recently, I featured Todd Neva of Hancock, Michigan, who has been battling amyotropic lateral sclerosis (or ALS, also called Lou Gehrig’s disease) almost five years. This week, I give his wife Kristin a chance to share her side of the story.

She and Todd have co-authored a book, Heavy, which documents their surprising story and helps others battling terminal illness.

After graduating from college in 1999, Kristin began a six-year stint coordinating a tutoring program for an inner-city Milwaukee rescue mission. While there, she and Todd, as husband and wife, saw and helped many people that had broken lives. The rescue mission was a place where they developed more compassion for the many people whose lives “often didn’t work out the way they had expected,” she said.

The Nevas in 2005 would move from inner-city Milwaukee to nearby Racine, Wisconsin, where Todd would hold an executive position with household products manufacturer S.C. Johnson. They began raising a family together. After Todd unexpectedly developed muscle weakness in an arm five years later, his doctor diagnosed him with ALS.

“I was in disbelief and didn’t even know what ALS was,” said 37-year-old Kristin. “When I went on the computer (to learn more about ALS), I was in shock. I had been so sleep deprived at the time anyway because our son then was only nine months old. I was in shock reading about the (five-year, in most cases) ALS life expectancy and the fact there was no cure. There are a lot of diseases where you have a fighting chance, or some chance, of getting through it. But with ALS there was no treatment, no cure. It was a dire prognosis. It was a lot to wrap my mind around.”

Rather than being the ones helping others through unexpected, difficult times, as they had in inner-city Milwaukee, suddenly the Nevas were the ones broken and hurting.

Kristin had always enjoyed writing, journaling, and reading. She began reading books about people with ALS, re-examining her own core beliefs, and trying to reconcile the many unanswered questions she had regarding their experiences with ALS and their deeply rooted faith. Much of the emotional roller coaster she went through became the book, Heavy.

She said, “We don’t always see what the purpose is in what we’re going through. Likewise, we may never know how God will use our story to touch others.”