Joyful Sorrow — Kristin Neva

This afternoon, I loaded our household trash into the back of my husband’s accessible van. After opening the rear hatch and lowering the ramp, I simply dragged our three 33-gallon trash cans up the ramp to where Todd would normally park his power wheelchair, then I drove to the transfer…

Moments of daily life with my husband Todd’s ALS frequently put both of us in panic mode. It makes me wonder if we should take more precautions — but there are trade-offs. The other day, for example, food got stuck in Todd’s throat while I was feeding him chicken…

For more than a decade living with my husband Todd’s ALS, I’ve been the finder and procurer of equipment that makes both of our lives better. Since disease progression has made travel to our closest ALS clinic too difficult, we’ve had to figure out how to manage the…

With shorter days and overcast skies lasting for weeks due to lake-effect snow, darkness comes quickly after sunset here on Michigan’s Keweenaw Peninsula. Because our nights are long, many of our cross-country ski trails are lit so that people can use them after work. I try to ski at…

As we head into the new year, I’ve been in decluttering mode. I sorted through my linen closet and discarded worn sheets and pillowcases. I sorted through files and found old tax returns, bank statements, and receipts, and I burned sensitive papers in my mom’s sauna stove. And then I…

I recently listened to a podcast called “The Art of Manliness.” The episode was titled “The Winter Mindset — How Norwegians Love the Winter (And You Can Too).” I could relate, because I live in a northern climate that receives over 200 inches of snow each year. Winters in Michigan’s…

My husband, Todd, was diagnosed with ALS in June 2010. That winter, Todd and I, along with our 4-year-old daughter and 1-year-old son, visited my parents in Michigan’s Upper Peninsula. My dad had plowed snow into high banks, and on one large pile next to the house, he had…

In the field next to our home, a stand of more than 100 Fraser firs provide boughs for my wreath-making operation. It’s a good seasonal gig for me because it’s flexible. Since I take care of my husband, Todd, who is paralyzed due to ALS, I can’t work outside…

It’s been a rough season lately in terms of finding care for my husband, Todd. One of his long-term nighttime caregivers gave notice last summer about moving on. Not only did she work two nights per week, but she was also flexible enough to pick up additional shifts, even on…

Life at home with ALS becomes like “Groundhog Day,” the 1993 film starring Bill Murray, in which the main character, Phil, is stuck in a time loop and is forced to live the same day over and over. But there’s something in us that craves novelty, and Phil goes…

As I drove through town, I cringed reading a church’s changeable-letter sign: “Be thankful for everything that happens to you. It’s all part of the experience.” There’s scientific evidence promoting the benefits of gratitude, so I try to practice it, but I get tired of counting my blessings…

I’m a do-it-yourself kind of gal. This has served my husband, Todd, and I well over the last 14 years as I’ve been his primary caregiver. We do not have an ALS clinic near our home, and our local neurologist moved away years ago, so we don’t have medical…