Joyful Sorrow - a Column by Kristin Neva

Since the point where my husband, Todd, needed a wheelchair because of his ALS progression, he’s had to navigate a less than perfectly accessible world. Todd is particularly challenged in our old community, which was built up long before the passage of the Americans with Disabilities Act in…

We often feel isolated now that my husband, Todd, is homebound because of ALS. He’s paralyzed with weak lung function, and it’s just too difficult for him to get out. So we were delighted when some friends planned a game night with us at our home last weekend. We…

My husband, Todd, is homebound due to ALS and I am his primary caregiver. That often makes our lives feel small. While I appreciate the small joys of life at home — watching birds perch in the tree outside my kitchen window, enjoying a cup of loose-leaf tea,…

As my husband Todd’s ALS progressed, trips to the doctor’s office became increasingly difficult. When he was still walking, we used to travel four hours from northern Michigan through Wisconsin to the closest ALS clinic in Duluth, Minnesota. We turned those trips into mini-vacations, bringing the kids along and…

Once when my daughter, Sara, was a baby, I made a mistake that led to a moment of sheer panic. After setting up her jogger stroller next to the car and strapping her in, I dug through the diaper bag that was still in the vehicle to get some…

One of my favorite Christmas gifts this year was balsamic vinegar — two bottles, actually — that my husband, Todd, gave me. Todd has ALS and is paralyzed, so he spends time watching YouTube videos about various subjects. A couple months ago, he came across a video that explained…

A memory from 12 years ago popped up on my Facebook feed. It was a video we had made for a benefit my husband’s co-workers organized for him after his ALS diagnosis. “When I was diagnosed I thought of Danny,” Todd says at the start of the video, accompanied…

After I finished this holiday season’s wreath orders, I moved my wreath-making table out of the dining room back into the garage and put away extra pine cones, bows, and birch bark. The room felt spacious without the clutter, and I told my husband, Todd, “This reminds me of the…

“The essence of trauma is powerlessness.” This quote from Christian trauma therapist Colleen Ramser grabbed my attention, because I often feel powerless as a caregiver for my husband, Todd, who is paralyzed by ALS. We’ve been having a rough week. Todd’s shower aide called in sick a…

A couple days ago, as I was dishing up our family dinner, I popped a piece of chicken in my mouth and accidentally aspirated, drawing a small piece of chicken or phlegm into my lungs. I tried to cough it up, but wasn’t getting it out. I winced and pounded…