Joyful Sorrow — Kristin Neva

Twelve years ago, my husband, Todd, and I installed bamboo flooring in three bedrooms and the living room of our new accessible home. Todd had been diagnosed with ALS two years before, and his arms had become quite weak. Contractors built most of the house, and a few volunteers…

“I’ve learned a lot of stuff I wish I’d known 30 years ago,” my husband, Todd, said after eating a meal of baked fish that I’d first brined, per his suggestion. Todd is paralyzed because of ALS, and he uses a noninvasive ventilator. His neck is too weak…

“I didn’t realize how weak my voice was until I was in a room full of chatter and background noise,” my husband, Todd, said after we had a stream of visitors for the past month and a half. At the end of May, many of my husband’s extended family came…

Since my husband, Todd, was diagnosed with ALS 14 years ago, I’ve been on the lookout for technology that will improve his comfort and quality of life while making my role as his caregiver safer and easier. Moving Todd is hard on me physically. He’s a big guy, and…

I’m cautious about leaving my husband, Todd, alone because ALS has compromised his lung function. Todd can usually tell when mucus starts building up, so if his lungs are doing well, we’re comfortable with me running errands or attending events, as long as I’m not more than 15 minutes…

After my husband, Todd, was diagnosed with ALS, we moved from Wisconsin to my childhood hometown in the Upper Peninsula of Michigan, where we built an accessible home on a small corner of my parents’ 38-acre plot. As his ALS has progressed, I’ve had to stick closer and…

After my husband, Todd, was diagnosed with ALS at age 39, he grieved the loss of his career and struggled to find a sense of purpose. When he was healthy, he’d hoped to take on new roles with his company and advance in management, but all of that became…

Last January, my sister-in-law asked what our plans were for my daughter Sara’s high school graduation. She wondered if she, my mother-in-law, and my husband’s siblings should plan to come for the commencement ceremony or a graduation party some other weekend. My husband Todd’s breathing is so compromised due to…

“Why are you bouncing?” my daughter asked me the other day as I prepared the medications and supplements that I give my husband, who has ALS, through his feeding tube. “It’s good for mental health,” I said. I’m always on the lookout for strategies to cope with the…

Nature calms me and nourishes my soul amid the challenges of giving care to my husband, Todd, who has ALS. A few days ago, I walked down our country road, listening to singing birds and taking in spring’s beauty. I admired signs of new life — budding green leaves…

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…