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A treehouse, ALS, and the joy of living life fully

Courtesy of the author
The author with his cousin, Doni Lynn Nelson.

At this year’s family reunion, we cousins sit on comfortable lawn chairs — as old people are supposed to do — beneath a commanding maple. The tree’s hardiness has been tested and confirmed by a decade of kids climbing all over it, thanks to the giant treehouse our host built for his grandkids.

Rich Cowles

My cousin Doni suddenly takes on a familiar devilish look and tells me we ought to climb it. A bit tamer than some of the crazy things she’s goaded me into at past reunions, like walking on our hands back in our 40s. But still, climbing the treehouse is ambitious enough for people in their 60s, and the youthful idea is distinctively “Doni.”

Expressions shift

Yet it’s different this year. You can tell by the sudden change in the air at Doni’s suggestion. You can tell by the stricken look of our sisters, the ones who sometimes laughed when Doni and I got into trouble as kids but who also looked out for us and made sure we were safe. And by her husband Jim’s uncharacteristically grave expression — mindful of a new reality.

Born 20 days apart and both second kids, Doni and I had an early and strong bond — notwithstanding the pre-freeway commute between her town of North Branch and mine of Roseville. She had an accepting companion while carving out her distinctive identity as an energetic tomboy always on the run; I had a playmate who pushed me to escape my normally cautious routine.

She would greet me with that devilish spark in her big brown eyes, and I followed her lead with complete confidence. Even when our nonstop energy would get us into trouble, like the time we fell into the scum pond chasing frogs, we partners-in-slime had the satisfaction of doing our own thing.

Every moment in motion

Doni has played out her life as if scripted, marrying the town athlete, teaching P.E., living near a golf course and spending every possible moment in motion outdoors. And, of course, arranging outdoor activities at family reunions.

So now Doni has issued a spirited invitation (why would I have thought this reunion would be any different?), and the ball has landed in my court — with a thud.

I look at the pleading eyes of our sisters, silently urging me to nudge Doni toward a safer activity — particularly given that she fell recently. Our big sisters are still looking out for us.

I look sympathetically at Jim. He’s been a rock for Doni ever since she was diagnosed with ALS a year and a half  ago. For a person as full of life as my cousin, whose identity is wrapped up in physical movement and fitness, it was a cruel trick of fate on the order of Beethoven going deaf. When she told the cousins about it, there were tears, of course, and a lot of sentences Jim needed to finish. But when she and I had lunch with our sisters several months later, Doni was mellow. I told her I admired the way she’s accepted her unfair and unjust plight; she said her focus changed when she realized her condition would be impossible for her kids and grandkids to accept if she didn’t.

And besides, she said, she’s determined to live as full a life as possible.

As full of spunk as ever

Sitting in the shade of the maple with the beckoning treehouse, I look into Doni’s eyes — they’re a little weary, perhaps, but as full of spunk as ever. Earlier today she proudly declared that, while her upper body and voice are weakened, her legs are still strong. I think about the fact that Doni’s life has always been about what she can do, not what she can’t.

It’s a beautiful, blue-sky summer day, much like those younger, carefree days when I eagerly followed Doni’s lead into thrilling, rambunctious adventure. An irrepressible burst of energy pushes us to the bottom step, and we begin climbing. I stay close behind Doni, with the hope that I can grab her if she falls.

But Doni is confident and sure-of-foot today, and she easily has enough arm strength to make it to the top of the short ladder to the twisting walkway. I mentally check off what I think is the biggest challenge. There are no scum ponds from here. Doni gives a little giggle and we continue on our adventure like two lighthearted kids having the time of our lives. I marvel at her quick pace and agility to twist through and around narrow passages. She was always lean and wiry and now seems paper-thin. But where she needs to grab the handrails, her arms don’t let her down. “Piece o’ cake,” I tell her.

Still leading the way

We reach the top. Doni is smiling and looking healthy in this moment, and tired. She turns to me and says, “I’ve never outgrown being a kid inside.”

“You are an inspiration to me,” I say. “You’re still leading the way.”

We take a deep, satisfied breath and suddenly notice the impressive view through the leaves from the treetop. The fact that we never would have enjoyed this view if we had stayed earthbound is not lost on us big kids.

Rich Cowles was executive director of the Charities Review Council before he retired. Now he’s a part-time volunteer, part-time writer and full-time grandfather. 


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Comments (1)

  1. Submitted by Tim Walker on 05/06/2016 - 10:41 am.

    Very nice. Thanks for writing

    Very nice.

    Thanks for writing this, Rich.

    It made my day.

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