Dancing in Small Spaces

By Leslie A. Davidson

Dancing in Small Spaces
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An unstintingly honest and surprisingly humorous memoir that charts a couple’s parallel diagnoses of Parkinson’s and Lewy body dementia.

In 2011, Leslie Davidson and her husband Lincoln Ford were enjoying retired life to the fullest as ardent outdoor enthusiasts, energetic ... Read more


Overview

An unstintingly honest and surprisingly humorous memoir that charts a couple’s parallel diagnoses of Parkinson’s and Lewy body dementia.

In 2011, Leslie Davidson and her husband Lincoln Ford were enjoying retired life to the fullest as ardent outdoor enthusiasts, energetic travellers, and soon-to-be grandparents. But when Lincoln’s confusion became a concern and Leslie began to experience a hesitant leg and uncontrollable tremors in one arm, a devastating double diagnosis completely changed their life.

In this personal and unstintingly honest memoir, Leslie recounts the years that follow the diagnoses—her Parkinson’s and Lincoln’s Lewy body dementia—charting physical changes, mastering medications (and sometimes flubbing it), the logistical puzzles of caregiving, and the steady support of their close-knit community in the small town of Grand Forks in south central British Columbia.

She describes her struggle to maintain perspective while questioning what having perspective even means, and the work of being an advocate while needing an advocate. And she explains how, amid all the challenges and tears, shared laughter remained all-important to their survival, especially in times when Lincoln saw her as an imposter. She shares powerful lessons in love, courage, and grace from the man who had always led the way and who, despite the ravages of his illness, in many ways, still did.

At once poignant and unflinchingly frank Dancing in Small Spaces is the story of a long and adventurous marriage, of deep gratitude, and, ultimately, of writing one’s way toward understanding and acceptance.

Leslie A. Davidson

Leslie A. Davidson is the author of two children’s books, In the Red Canoe (Orca Books, 2016) and The Sun is a Shine (2021). Her essay “Adaptation” won the CBC Canada Writes Creative Non-fiction Prize and her work has been published in the Globe and Mail, Viewpoints and On the Move. Davidson is a retired elementary school teacher, a mother, and grandmother. She lives in Revelstoke, BC.

Excerpt

Aside from the night terrors, Lincoln seems much as he has always been—perhaps a little more indecisive, a little more dependent on me for company, but I must confess that I like that. It is not always easy to be the spouse of a man determined to follow his own path in all things. We have experienced huge challenges in our relationship but neither of us can tolerate unhappiness for any length of time, so we take turns pushing each other toward resolution of our differences. He loves me enough to seek help when I ask, even when he thinks it unnecessary. And I love him enough to shut up and listen, to give a quiet soul room to breathe and time in which to think. And we practise forgiveness. We worry together about our kids and delight in their well-being. We hold each other up through all those close-together deaths—his parents, his sister, my dad, and my mother’s youngest brother. That time, intense and grief burdened as it was, reveals the deeper measure of our love for each other. We are each other’s best comfort. We look at the world in similar ways. We share the same values. And we make each other laugh. We are good friends.

I enjoy finding him more often by my side and needing me . . . just a little bit. When I notice him quiet and withdrawn on social occasions, I dismiss it as problems with his hearing. He has been profoundly deaf in one ear since childhood and he is in his late sixties, fit and strong, but not a young man. He has never had any patience with small talk or schmoozing.

The first time he struggles with the income taxes, I am relieved to have it all packed up and delivered to an accountant instead of littering the dining room table.

“We’ve worked hard all our lives, sweetheart,” I say. “Let someone else handle this. Wouldn’t you rather go for a hike?”

His uncanny sense of direction seems to be deserting him but mine has always been so dreadful that no alarm bells ring, or if they do, I refuse to listen. I cover my ears with my hands and tell myself what I need to hear.

“He’s okay,” I repeat to myself. “He’s getting older. That’s all. He’s okay. ”

Naomi and her partner, Isaac, are spending a year in Costa Rica on the farm of Isaac’s family. I find myself making all the plans for a trip to visit them and tour the national parks with a small adventure company. Lincoln happily goes along with all my decisions.

Great, I think. That was easy!

I do not acknowledge that it is completely out of character for him to be so compliant. Close friends tentatively express concerns and ask questions I can’t or won’t answer.

“Is Lincoln okay?” they say.

They tell me stories about how confused he seems when they are making plans, how he sometimes asks the same questions over and over. We buy a new car and he cannot figure it out. Little things, like the window buttons, door locks, and mirror positions, and the big things—backing up, parking between the lines—they all confound him.

“He’s getting old,” I insist in defensive explanation of his behaviour. “He’s driven the same vehicle for fifteen years!”

Denial is a wonderful thing. Until it isn’t.

 

The day before we leave for Costa Rica, I experience an uncontrollable tremor in my left arm as I am putting on my coat, a tremor that persists and increases in frequency throughout the month we are in Central America.

A pinched nerve, I tell myself. Something to do with my shoulder injury.

That’s not all. I have been seeing a physiotherapist about severe pain in my right shoulder and mention to him that occasionally I feel as if my left leg is unresponsive, that I must consciously focus on it to get it moving properly. He watches me walk and sees nothing unusual in my gait.

“It looks good,” he tells me, “but if it persists, come back and I’ll do a thorough neuro workup. ”

I cling to “looks good” and put “neuro workup” out of my mind.

It isn’t until we are in Costa Rica, that February of 2011, and I am unable to keep my flip-flop sandal on my left foot, that I allow myself to begin to consider that something more serious than a pinched nerve might be wrong with me. I test my left foot and hand, my left arm and leg. I can trigger the tremor by holding my arm out straight or doing up a zipper. My leg drags to the point of tripping me up if am tired and forget to make it “walk properly. ” If I stand on tiptoe, my left heel sinks immediately to the ground. If I stand on my heels, my right-foot toes remain up, pointing skyward, while the left ones drop quickly.

Lincoln takes a zip-lining excursion through the Costa Rican jungle, but I am now on a waiting list for shoulder surgery and choose a rainforest canopy walk as a safer option. When we meet up after our separate adventures, he is upset.

“I couldn’t figure it out,” he tells me. “I had to go tandem with one of the guides!”

I am, at first, shocked and dismayed. He is a rock climber, used to ropes and unafraid of heights, and has always been physically coordinated and quick to learn, with extraordinary stamina and balance. Then I begin to rationalize his experience.

“You’re left-handed,” I remind him. “And you don’t speak any Spanish. And you’re deaf in one ear. Anyone would find it tricky!”

What does my cheerfulness cost him? Does it hurt? Is it reassuring? I don’t know. I wonder if my unwillingness to see his struggles is the result of my fears about my own health.

Between us we have an accumulation of changes, many small, some large, but we are both still very much ourselves, content with each other and the good fortune of our lives, getting older but not yet old. It is easier to pretend all is well in our world because, really, it is. Some of the time. Enough of the time.

 

—from Dancing in Small Spaces

Reviews

"This book is a triumphant song of love. Beautifully written, fierce and tender, it will inspire gratitude in everyone who reads it. " —Alison Wearing, author of Moments of Glad Grace

"A sad and beautiful story that sparkles with wit, wisdom, and honesty; a primer on courage that insists on a simple but profound truth: love is the domain of the brave. " —Kara Stanley, author of Fallen and Ghost Warning

"What happens to love when identity stumbles and fragments? How does love survive? How can love survive? The beauty to be found in this book lies in its refusal to shirk difficult questions. Leslie writes with honesty and credibility. She is a writer who consistently sees a different slant, a jagged edge in an otherwise direct theme. " —Dr. Jon Stamford, neuroscientist, co-founder Parkinson's Movement

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