Lessons for living with ALS from my recent nature walk

I'm grateful to observe the cycle of life along our nearby country road

Kristin Neva avatar

by Kristin Neva |

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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.

A nature shot with a blue sky with a few white clouds and an open area of green grass to the left. Trees without leaves, most scraggly, ring the area. The center of the frame has a short tree with peeling white bark; it appears shorn at the top.

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.

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.


Mike Meister avatar

Mike Meister

Nice to read.

Melody Ruffin Ward avatar

Melody Ruffin Ward

This article really moves me. I have been living with ALS for 2 years now. I feel the subtle & radical changes in my body.
My mind & heart are still strong and for that I am ever grateful.
Being reminded of the beauty in nature and the way it so beautifully recycles itself gives me both pause & ease as I continue living. Thank you so much.

Kristin Neva avatar

Kristin Neva

Thanks for commenting!

Bud avatar


Hello everyone. Really, I don't know what to say. I'm one of the those living with ALS. It took 2 years for the diagnosis. That was after months and months of every kind of test for every thing. One test and Doctor led to another and that to another. Then the Doctor that made my diagnosis told me, I am certain you have ALS. By that time life was changing, and not for the good. He started me on two medications. I take twice a day and the other I take for 10 days, then off for 18 days. The worst of this was being took there is no cure, but the meds could help to extent your life. There is way I let this rule my life. Even though every part and function in my body is failing and make it difficult, Every day I push my body to the limit. I don't like people telling me I need to stop this and quit doing that. I will not give up. I have a wonderful wife and family that has given up a lot to make to sure I have the care and Love. Remember if some else can do it, tell yourself you can to. Like they say there will be no white flags. Hang in there.


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