The event last night cost me a lot in time, gas, and cookies. In every way but cookies, it came up short. Or did it?
The occasion was a reading of my book, The Dwindling, A Daughter’s Caregiving Journey to the Edge of Life, at the largest library in my area. Looking out the window of the cavernous room we’d booked for the occasion, was the picture perfect harbourside of Nanaimo BC. Looking out over the audience, there was one wizened lady with a big sun hat, a backpack and sensible shoes.
Here’s the back story of this nightmare.
It began with an idea that my author friend Carollyne and I hatched over a glass of chardonnay, that we could both tell our stories with their tough truths, and sell lots of books. The author circuit would be more pleasant in collaboration with a friend. How could we lose? That plan came to fruition last night. But it did bear fruit?
We called our dog and pony show, Adventures in Elder Land. Her novel’s theme is elder abuse, one edge of a family relationship where the elder’s vulnerability is misused by greedy children. I’m on the other edge. We stepped up to support our vulnerable parents.
Over several hours, Carollyne and I figured how to meld such different approaches in different genres into one compelling event. We chose three issues bound to trigger response: the onset of dementia, family consensus, and the tug of war of control. Our powerpoint tossed the presentational ball back and forth between us. We practiced reading with feeling. I bought the juice and cookies and Carollyne got the technology working. Then, in the last half hour before show time, we fortified ourselves in the cafe across the street with a pinot noir, speculating about how many people going into the library were our audience. Wiping our lips of tell tale stains, we were ready.
Our audience of one browsed our books table without reaching for her wallet. The librarian said it was silly to introduce us to an audience so small. She offered excuses for the debacle. “The day is too beautiful. Children are just out of school. It is the start of the long weekend. The topic is depressing."
Feeling a little ridiculous, though perhaps not as uncomfortable as our audience, Carollyne stepped up to the mike. Her voice echoed like a grinding vacuum cleaner in an empty cathedral. I couldn’t manage such artifice, even though it was our pact to call this a dry run. Instead, I sat backwards on a chair, leaning onto my audience who introduced herself as Rosemary. Fifteen minutes into our hour she sighed, reached for another cookie, and told us to please stop the presentation. It was boring and a little bleak.
Munching contentedly, she began her critique. Too long. Too stiff. And most of all, we had no rapport with our audience. “I don’t want to hear about your book,” she said, “not at least until I know more about you.” Like Socrates she pushed me. Every answer I gave about my motivations for writing the book led to another question. Why did you do that? How did you feel? What was really going on inside? There was a sheen of sweat on my forehead and I felt the prickle in my arm pits. I stammered, all pretence of smooth talk gone. At last my carapace cracked. Who cared about my masters degree in community based research anyway,?Rosemary snorted. Piffle! It was my story about sitting with African women under the acacia tree, digging for their truth about hauling water, keeping healthy, learning to read that really interested her. That was the fact that would convince her why I was compelled so many years later to collect every artifact of my parent’s dwindling and try to make sense of it all. Rosemary assured me that if that was my true credential, people would relate to my book. But I must limit the readings to a paragraph not a page. “People have the attention span of a flea”, she said, slurping juice. Carollyne had the same grilling. “I sound like a piece of fluff,” she whined.
“No, you sound like you have a right to write this book,” Rosemary replied, full of confidence as she took three more three cookies and wrapped them in a paper towel “for later”. She slung her backpack onto her shoulder, straightened her hat, and said she had do go.
But before she left, she made the big reveal. Rosemary was a retired teacher. All her career she had forced truth out of pose in thousands of students. “You’ll get there eventually,” she said as she stood to go. “Keep at it.”
Our thanks for her coming came from the soul. This stranger had offered more than any book or course or coach in presentation. ever could. And we needed her on this maiden voyage. From the perspective of our plans to ply an audience with talk and refreshments and then sell books, this was a failure. From the perspective of learning, we were winners beyond any expectation.
I have two goals as an author of The Dwindling. One is to sell it. The other is to use it to engage about important ideas about caregiving at the edge of life. Two audiences have different expectations, and need different approaches. So thank you, uninvited teacher! You left a gift of edgy honesty that was worth far more than the cookies you cost.
“Just a quick note to say thank you for a great evening and for sharing your experience. It rang bells and stirred a desire to do something to build our community of support.”
An email this morning has got me on a roll. “To do something to build our community of support.” Yes! I’m seeing everywhere I go how sharing my story always seems to pull out a dozen others from those attics in caregiver’s minds, where they’ve been stashed gathering dust and maybe even guilt. But two extraordinary events this week in Calgary tell me it’s time for us all to pull together with what we know from being caregivers, and get cracking to make a better world.
The first setting is an indie bookstore, Owls Nest, in a strip mall and known by any Calgarian who loves books as one of the very best places to be. The crowd is mixed. My interview on CBC has pulled in all sorts of curious people. The place is packed, “more than twice as many people as we have ever seen at an event like this,” says Sarah the events mover and shaker for the store. Fortunately there’s enough wine. Unfortunately, there aren’t enough books. We’ll fix that of course. If not from the preferred Canadian source, then there is always Amazon.
But I digress. This is not about my reading. That just kicked off the discussion. A geriatrician passionately spoke about the most precious time of life, it’s very end. A spiritual time. A time of transformation for everyone lucky enough to be involved. A time to treat life tenderly and allow it to end the way it is meant to be. And support? The best comfort that medicine and love can offer. Her passion for the palliative approach to end of life care was palpable. Her hand was on her heart as she spoke. A pin dropping would have felt like an interruption.
Then several caregivers spoke in turn, an ethicist, many daughters of course. An old man struggled to his feet, turning to his listeners like a pro communicator, except that his voice trembled with emotion. His was the story of a beautiful death, his wife’s, and her choice to accept the help of a physician to end it at her chosen moment. Back and forth the pole positions went while the audience held its breath. Would this become a squirmy debate? It didn’t.
I offered my favourite image. A powerful eagle, soaring on two fully functioning wings having all the necessary flight feathers for strength and balance. One wing, that choice we are learning more about every day, called Medical Assistance in Dying. The other, that choice we need to develop. Palliative approaches for comfort care available to everyone who needs it regardless of where they live and why they are dying. Only three in ten Canadians have a hope of getting it now. That’s not right. Everyone nodded.
But this extraordinary discussion didn’t end in that agreement. “What about the people who do not have caregiver family?” someone asked, twisting her widow’s ring. Hard question. But out of the audience came the first threads of an answer. “We must relearn what we knew before, how to be community strong.”
Someone else recalled the crisis of the ice storm that knocked the infrastructural stuffing out the city of Ottawa for many days and was still remembered. Not for the crisis, but the opportunity. Only when the lights went off did neighbours start to know each other, share food and warmth, make friendships that lasted long after the heat came on again. That terrible time was the rediscovery of the long lost play book of really being in community.
To me the best bit of all came as dusk settled outside the Owls Nest. The speaker was a thirties-something woman, striking in her youthful beauty and smiling as she looked around at all of us, speaking loudly so overcome the whistles of our hearing aids. “Thank you!” she said. All eyebrows raised.
She explained what she meant. We were the first folks of a certain age she’d ever met who weren’t trembling in fear of the future or fist shaking at the failures of systems that weren’t helping them enough. We were embracing the idea of remaking community, “like the old days”. She was sure too that being there for each other would help us all navigate the the way ahead on that uncertain demographic journey, and clear away rocks in the road. “Thank you for what you are teaching me.”
It was a different crowd the next day, at the old sandstone building in South West Calgary that used to be a boarded up school. I arrived with my box of books and young guys in hard hats all raced to hold the door. Scaffolds were everywhere. This is C-Space, It came close to being demolished to make way for condos. Some visionary won the day to refit it into an incubator for a cultural shift. This is where the Calgary Association for Life Long Learning was setting up chairs for my talk about The Dwindling. I’m right on the money of CALL’s philosophy. Members have valuable knowledge gained from life experience and a diversity of talent to be shared, it’s website declares. I did my reading. We talked. Then I moved to the hall for more conversation and to sign some books.
It was noisy out there. Drums were throbbing and what sounded like a native honour song was being belted out at full voice just down the hall. Presently a kind faced native boy with glistening black hair down his back came to apologize for the ruckus. “Are we too loud?” he wondered. He explained that his group was preparing a theatre piece, rebooting the proud story of Treaty 7 First Nations. for a new generation. He was excited by it all, said he felt a new and inclusive era dawning with so many people ready at last to understand.
“Noisy? Not at all,” I said, handing him a copy of my book to read on the tour bus. “We are rebooting too…” I explained about the conversation we had just had, as one story led to many and we all realized our common cause. I told him we also had a problem with perception. “We’re called the greys in the What’s Ap world and hey, that tag makes us see ourselves as feeble too!” I reached for a pen to sign his copy. “That isn’t right!”
My elderly peers pitched in, realizing we were confirming our idea by explaining it to this fellow. We told him that we were seeing the beginning of our solution to the caregiving crisis up ahead, and thinking how to take it into our own hands. We might not have wizard tech skills or fingers still flying over our smart phones, but we know what a good community of care looks like.
“Pass the book around when you’re done,” I said, “I think we’re all on to the same idea.”
He looked at us, a gaggle of wrinkled women grinning at him, and there was just that hint of wrinkled brow to tell me he had a question. “What’s that idea?”
I smiled, passing back his signed copy. “It’s simple,” I said, “We are the solution we yearn for.”
it's about the journey
Caregiving was my first and finest journey. Writing this book about it was the next. It lends support to other caregivers who say, "that happened to me too." I'm on another journey now, advocating for caregiving and an activist to bring on better ways of thriving as we age. It's all brought me purpose and meaning, Come along and get some of that too! I'd love to share your stories. Boldly speaking out about our experiences makes us all part of the change we want to see. So
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