Joyful Sorrow - a Column by Kristin Neva

My son joined middle school track this year, and after a few days of practice, my husband, Todd, asked how it was going. “I’m not a long-distance runner,” he said. “I don’t know how to pace myself.” “I was no good for any distance, either,” Todd said. “I ran…

As a caregiver for my husband, Todd, who has ALS, I’ve experienced numerous traumas in the 14 years that we’ve been living with the disease. Our lives were shattered with Todd’s diagnosis, which occurred when our daughter was 4 and our son was 9 months old. I…

I make lists to keep track of everything I need to do in addition to taking care of my husband, Todd, who has ALS. Make an appointment to have the snowblower removed from the tractor and the bucket put on. Get the snow tires swapped out for summer…

A decade ago, I purchased a fireproof lockbox to secure important papers, such as birth certificates, Social Security cards, and passports. I also stored several necklaces that my husband, Todd, had given to me, along with two watches he’d worn before he got ALS. Over the years, I added…

My husband, Todd, woke to double vision after a week of severe headaches. He was discouraged because his vision was one thing he had left after 14 years of ALS taking most of his muscles. I scheduled an appointment for him to see an ophthalmologist on Monday of last…

Last week, my kids and I drove from Michigan’s Upper Peninsula to the Milwaukee area for spring break. I have many fond memories of living there with my husband, Todd, more than a decade ago, before he got ALS. It’s too difficult for him to travel now due to…

I recently connected with another spousal caregiver who wondered how I felt about life now that my husband, Todd, has had ALS for nearly 14 years. She’s just a few years into life with ALS, and her husband uses a power wheelchair and speech-generation technology and receives ventilation…

I recently came across a CNN opinion piece by writer s.e. smith titled “Jokes about disability aren’t taboo. But here’s who shouldn’t be telling them.” I read on, because my husband and I often use humor to deal with the difficulty of life with ALS, as Todd…

“I’ve noticed a decline in my mental health this week,” my husband, Todd, observed after a week of being quarantined in his office. Our daughter had a bad cold, and Todd hoped to avoid the bug that would have threatened his life. He rarely leaves our home, anyhow, but…

Our family had another close call recently that caused us to our reexamine our methods of emergency communication. Due to ALS, my husband, Todd, is completely paralyzed in all his limbs and has low lung function. He is dependent on noninvasive ventilation to breathe and to talk. Without…