Finding Hope Alongside the Ski Trail

Last Sunday, the temperature was in the high 40s, making the tracks in the cross-country ski trail smooth and fast. A gurgling brook carried away snowmelt from a long winter. Birds sang. Two chipmunks scampered up a tree, one chasing the other. Spring skiing is one of my favorite activities.

I stopped to examine an ornament dangling from a branch of a balsam fir. Someone had laminated pen art flourishes in the shape of a diamond. If it hadn’t been spinning in the wind, I could have missed seeing the black-and-white design against a backdrop of birch trees. And if I hadn’t taken the time to study it, I would have missed that on one side, among all the lines, curves, and shading, the artist had incorporated the word “HOPE.”

Hope alongside the ski trail. (Photo by Kristin Neva)

How appropriate to find hope as we enter spring, with its promise of new life. But I’ve had an uneasy relationship with hope ever since my husband, Todd, was diagnosed with ALS in 2010.

If hope means anticipating fulfillment or success, then it can be difficult to find with an incurable, progressive disease.

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Initially after his diagnosis, Todd tried alternative therapies because trying something felt better than doing nothing. But the disease continued to progress. And a year ago, my hope that Todd could be treated with NurOwn was dashed after the U.S. Food and Drug Administration didn’t greenlight the experimental stem cell therapy.

Sometimes people talk about having hope for heaven. While I’ve found comfort in that eternal hope for my loved ones who have died, the promise of heaven hasn’t provided fulfillment or success in this life as we’ve struggled to manage this relentless disease. How do we keep going amid the day-to-day hardness of life?

Maybe it would be helpful to redefine what fulfillment or success looks like.

My friend Jana told me that when she was 5 years old, she heard her parents talking about how money was tight on the farm. She was worried and asked her mom, “Are we poor?” Her mom replied, “We are very rich. We just don’t have much money.” Jana walked away happily.

Maybe Todd and I are successful if we do the best we can to keep loving each other through this agonizing journey. Maybe we can find fulfillment in continuing to engage with each other and our kids. When we take the time to examine them, these little things look like hope redefined.

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.