Joyful Sorrow — Kristin Neva

Committing to be out of the house is tricky because my husband, Todd, has ALS, making him paralyzed below the neck and requiring noninvasive ventilation. As long as his breathing is going well, I can run errands and attend events that aren’t more than 15 minutes away. Longer…

My daughter, Sara, is beginning her freshman year at a university a couple hours from us, and last Saturday was her day to move into the dorms. I had planned to help her move, so weeks ago I lined up a daytime caregiver for my husband, Todd, who has…

Last week on NPR’s “Morning Edition,” correspondent Ashley Westerman talked about Ukrainian women getting manicures. “It’s just part of looking as good as you can. It’s a matter of hygiene for some but mostly a way of feeling normal in wartime.” The piece resonated with me because I’ve…

A month ago, one of my husband’s nighttime caregivers gave notice that she won’t be able to work beyond the summer, and our search for her replacement began. I asked Todd’s other caregivers to spread the word, I posted on my Facebook page about it, and Todd reached out to…

“I really want to go to your performance,” my husband, Todd, told our daughter, Sara, who was starting a weeklong intensive with Eisenhower Dance Detroit that will culminate in a performance Saturday. “It’s just too hard to get out, and I don’t want to sit in the theater with…

A couple years after my husband, Todd, was diagnosed with ALS, we moved to the Keweenaw Peninsula of Michigan to be near my parents. We had two small children at the time, so we’d explore the shores of Lake Superior for family outings. We spent time at McLain State…

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…