Lessons for living with ALS from my recent nature walk

Nature calms me and nourishes my soul amid the challenges of giving care to my husband, Todd, who has ALS.

A few days ago, I walked down our country road, listening to singing birds and taking in spring’s beauty. I admired signs of new life — budding green leaves on trees, violets growing with new grass in ditches, and wild strawberry flowers in patches here and there. I look forward to retracing my steps in a month to eat the fruit.

On the way back, I stopped to inspect a marvelous scene of textures and contrast in a cluster of dead paper birch, jutting up into a deep blue sky. The trees had died long ago. The branches were bare, and the trunks had begun to rot. On one of the trees, three large mushrooms clung to the white bark.

Decaying birch trees. (Photo by Kristin Neva)

I walked to the base of the broken trees to take a closer look at the mushrooms. They were pretty from a distance, but looked dirty and pocked upon closer inspection.

Mushrooms such as these may not be beautiful, but they’re valuable to our world. Fungi feed on the moist deadwood, contributing to our ecosystem and recycling nutrients back into soil.

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A lesson for living with difficulty

At a distance, our life with ALS might look beautiful, even as the disease gradually took my husband’s mobility and is now taking his breathing. But the smiling pictures we put forward on social media and on our Christmas card don’t show the difficulties of the disease.

Up close, ALS is not pretty. Todd feels discomfort from his immobilization. He panics when he struggles to breathe or cough, and especially when he cannot communicate. We both feel weariness and isolation after years of ongoing decline.

I wouldn’t choose to live with these challenges. I’d rather have lived a life with new green leaves and flowers, but the spring of our marriage too quickly turned into living through the dying process. It’s hard to come to terms with the suffering that this disease has brought into our lives. It’s hard to come to terms with the suffering in the world.

But in a world where we love and are loved, my hope is that the pain of this life will be recycled into more compassion. We all have deadwood in our lives, but maybe with time the spores will work their magic, and something beautiful will grow out of nutrient-rich soil.

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