Finding things to look forward to, even with ALS

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 least a few times a week because exercising and soaking up natural beauty help me cope with the stress of living with my husband Todd’s ALS.

The other day, I had timed my skiing to coincide with picking up my son after his swim practice. It was starting to get dark, but the trails are close to his school, and I thought I had enough time to complete a short loop of an unlit trail. As I made it to the halfway mark, the sky darkened, and I picked up my pace. I was cutting it close. Surrounded by trees, under a cloudy sky, and far from city lights, the darkness of an Upper Peninsula night can be unsettling.

And then I rounded the final bend and felt a sense of relief when I saw a light ahead on the trail. The light in the distance gave me peace of mind.

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A lit ski trail on Michigan’s Keweenaw Peninsula. (Photo by Kristin Neva)

One of the hard things about living with ALS is the knowledge that life will only get more difficult as the disease progresses. This disease isn’t something we can get through and go back to normal afterward. We can’t even find a new normal for long. It’s hard to look toward our future, and so it’s good for my mental health when I can find things to anticipate, such as my nightly sauna.

I wondered if Todd finds things he looks forward to now that he is homebound and completely paralyzed from the neck down. He spends most of his day on his computer with a window to the world only through the internet. I asked him to share his thoughts.

He said he looks forward to our Saturday date nights when I bake Lake Superior whitefish or trout, and we find a movie to watch or a series that we enjoy working our way through.

He also looks forward to visits with a friend who comes over a couple times a week and others who visit him occasionally.

Having friends and family visit us is a source of light for me, too. When we have company, we enjoy playing board games. With our out-of-town company, I sometimes get out for a hike or visit some local attraction.

Before the new year, my old roommate from Milwaukee and her friend visited, and we went to a Nordic spa at the foot of the Mount Bohemia ski hill on the tip of the Keweenaw Peninsula. I hired a caregiver for Todd and we drove 45 minutes north to a winter oasis with various saunas, a hot tub, and a heated pool. The spa also had a cold pool, and I plunged into that after having heated my core in the sauna. It was invigorating and relaxing.

Relaxing at a Nordic spa on Michigan’s Keweenaw Peninsula. (Photo by Kristin Neva)

After returning home, I baked whitefish and sautéed green beans and strips of zucchini with garlic and soy sauce, and then we played a board game with Todd.

It’s not too expensive to hire a caregiver for Todd for a few hours on those occasions when people are visiting, but once a year I’ve tried to get away from home with our kids for a few days, so that they would have spring break experiences and I’d have a break from caregiving. This year, I plan to take my son to visit extended family in Florida. I wish Todd were still healthy so we could all travel south to warm weather together.

This morning, as Todd was lying in bed, he said that he had thought more about what he looks forward to the most.

“What’s that?” I asked.

“Going to bed,” he said. “I just woke up, and I’m already looking forward to going to bed tonight.”

“How come?” I asked.

“I am most free in my dreams.”

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, and are intended to spark discussion about issues pertaining to ALS.