Loving What’s Left

Kristin Neva avatar

by Kristin Neva |

Share this article:

Share article via email
winter, loving

With my gym closed, I’ve been getting my daily exercise by cross-country skiing. A calm happiness washes over me at about the 2-kilometer mark, after my heart rate is up and endorphins flood my brain. I take in the beauty of the woods. Soft snow, the vestige of winter, still blankets the ground, shaded by the deep-green foliage of cedar, pine, and fir trees. Brown ground peeks through in places that get sun. An earthy smell of spring is in the air. My skis swish, and I rhythmically drum my poles, accompanied by the sound of the wind, the chatter of squirrels, and the songs of birds as they flit from tree to tree.

Some of the trails are closed, but the shaded ones still have enough snow. Yesterday, I skied the entirety of one of my favorite loops, but on one section that gets a lot of sun, I needed to hug the tree line. The sun warmed my face, as the cold from the melting snow rose from below — an interesting experience of contrasts.

I love skiing at the beginning of the season, when I’m excited to be back on the trails. I love mid-winter skiing in snow like powdered sugar. But spring skiing is good for the fact that I still have it, even though the trails are soft, with snow more like the half-melted, granulated sugar variety.

My fellow skiers and I are delighted to still be skiing this late. We greet each other on the trail, maintaining 6 feet of social distance. “Isn’t this beautiful?! It’s so good to get out.”

The snow’s been hanging on longer than we expected. Each day on the trails, I wonder if it will be my last ski of the season. It might be. Grooming was suspended after a couple days of warm temperatures this past weekend, so I know the end is near. One rain will take it out. If we can make it another week, that will be a half year of skiing.

Each ski day is precious because I know it will soon be over. I’ve been posting a daily picture of the trail for friends on social media, never knowing if it will be my last picture of the season.

Spring skiing. (Photo by Kristin Neva)

Such is life with ALS. My husband, Todd, was diagnosed nearly a decade ago, and he has been with us much longer than we expected. I wonder if each event on the calendar — a birthday, our anniversary, a holiday, a family photo shoot — will be the last one that Todd has with us. A bad cold or COVID-19 could mean the end.

Todd and I loved the excitement of our lives when we were first married — when we traveled, went out to restaurants, rollerbladed along Lake Michigan’s waterfront, and dreamed about the future. We also loved that part of life when we were new parents, partners in the intensive work of caring for a newborn, and then a preschooler and a newborn.

It feels as though we skipped a bunch of other stages, and now as a couple we are in the twilight years. With ALS, there are hard, impossible days, but there’s also beauty in hanging on.

This morning, I turned Todd in bed and adjusted his limbs. “My forearm is twitching,” he said. I massaged his once-muscular arm. It felt as thin as mine. I squeezed it, willing the fasciculations to stop so he could relax and fall asleep. I squeezed, holding on to what I fear is fading life. If he could make to October, he will have lived a half century.

For lunch, the kids and I made pizza pies cooked over a fire in our yard. Todd has fond childhood memories of eating cherry pies, made with two slices of bread and cherry filling cooked in a campfire pie-maker, so we made one for him. After dinner, we watched a movie together. We keep living because today we are here, and time is precious.


Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.


Susan Riordan avatar

Susan Riordan

Wow, I miss skiing! Downhill and XC Skiing...I loved it! I started skiing at the age of 6. My last X-C Skiing was was two years ago in January... now it's just a memory. I gave away all my ski gear.

Cindy avatar


Know just how you feel wondering about every moment and when it will be the last time for anything or no particular thing. Often think of that song: “Live like you were dying “
Because we with ALS are.

Richard avatar


So poignant. My wife was diagnosed in Sept. 2019.
We have been married 56 years. We are so much more fortunate than most ALS patients since we have lived to see our three granddaughters become such delightful, wonderful young ladies.
It is sometimes hard to keep focused on how generously we have been blessed and easy to succumb to anger, fear and fatigue.
God bless.


Leave a comment

Fill in the required fields to post. Your email address will not be published.