No amount of fear

Back from our road trip, I realized, retrospectively, that in nearly every visit with friends and family during those weeks, I talked about Lynch syndrome. No one had heard of it, so understandably the responses to my talk of it were muted, seemingly uncomprehending of my worries and thus not wholly satisfactory on an emotional level. But, like Coleridge’s ancient mariner, I kept at it, speaking of it again at the next stop on our itinerary.

Reflecting on this compulsive sharing, I have to conclude that this Lynch syndrome business has affected me more than I thought. Lynch syndrome is an inherited genetic predisposition to certain kinds of cancer, often manifesting relatively early in life, and no, I don’t have it. But my husband does.

The confirmation that he does was not a huge surprise, in light of his history of four kinds of cancer so far, though we’d never heard the name either until a cousin of his phoned to say their entire family had been tested and there it was, in nearly half their siblings and in those siblings’ families. Suddenly we saw H’s  family tree, beginning with his grandmother and then his mother’s line as well as one of her sister’s and one of her brother’s and their children and the high predominance of cancers, in a new way. What we’d occasionally remarked on anecdotally was a family tree with blinking lights all over it, the latest our 56-year-old niece who died this year of a brain tumour, she the daughter of H’s sister who passed away of cancer some years ago. We took what we knew of the family tree to his oncologist and a test was readily arranged, and then we had the results, the marker. Which means that if they wish, our three children can be tested as well. (It doesn’t skip a generation, but children of a carrier have a 50-50 chance of being carriers as well.)

But all this is a long introduction to a book I wish to recommend. I heard about it “by chance” when I turned on the car radio while doing errands. Ami McKay, well-known author of The Birth House and The Virgin Cure, has a new book out: Daughter of Family G: A memoir of cancer genes, love and fate. As soon as I got home  I placed a hold on it at the library, and it was waiting there for me during our road trip, so perhaps that too is why I was bringing it up at every stop.

I’ve read the book now and it’s interesting and well written. McKay is part of the original family that a pathology professor, Dr. Warthin, tracked when her great-great aunt, Pauline Gross, a seamstress, confided that she expected to die young, like many others in her family. Dubbed Family G, this became the longest and most detailed cancer genealogy studied in the world. Dr. Warthin posited that there was a familial connection, though not all his colleagues were convinced; they felt the causes of cancer were external. Unfortunately the study was used in service of a toxic eugenics environment in the 1930s that proposed such “lesser” folk shouldn’t have children. Eventually a Dr. Lynch and others discovered the genetic particularities that make it a syndrome. And fortunately, alongside, early detection and treatments for cancer have also advanced.

Ami McKay juxtaposes the historical narrative of the syndrome with the stories of various family members as well as her own story. She tells us early on that she tested positive as a carrier, though at the time of writing she’s still cancer free. There’s a thread of suspense as well, as we don’t know until late in the book whether her eldest son, now old enough to be tested, is positive or negative.

The book was interesting, yes, but tough to read as well. But satisfying too, in the resonance I felt with both McKay’s fears and her approach to life in spite of. Sentence by sentence she plucked at what I was feeling as a mother, or perhaps anticipating. “Even though I’d told myself a hundred times over it would probably turn out this way, I’m completely devastated….” she writes about hearing the results of her test. “I now live in an unsettling state between wellness and cancer.”

She decided to take science’s offer to “glimpse” her future, she says. But science didn’t show her “how to live with” what she saw. For that she drew on the inspiration of various similarly affected people in her family line.

Information is power, science says. It saves lives.

Yes, absolutely it does.

And our stories keep us whole.

She remembers her grandmother Tillie’s favourite saying: “all the flowers of all our tomorrows are in the seeds we plant today.” “If you can believe that one seed you’ve sown, one deed you’ve done will flourish after you’ve gone, then you’ve beaten the curse.”

I didn’t choose to be born with a genetic mutation any more than I chose to have curly hair or hazel eyes, or the likelihood of having lots of freckles, or the predilection for salty over sweet. But I sure as hell can decide which character traits from my ancestors I wish to embrace. Courage, fearlessness, persistence, kindness, a dedication to telling the truth–these are the things I choose.

But my very favourite line is this one:

No amount of fear can ever make us safe.

 

 

Road trip diary (# 7)

On the Coquihalla Highway

This will be our longest day of driving, and our last, and this the 7th and last diary post too. (Seven being a perfect number and all.) We decided to drive the Water Valley (near Calgary) to Tsawwassen (near Vancouver) stretch in a day; we two old horses are smelling the taste of home (sweet home)!

In terms of All That Belongs, yesterday was a great day. We drove from Red Deer to Linden for an early afternoon coffee and reading. There were fourteen of us around a long table at Country Cousins restaurant, enjoying pie and conversation. I grew up in Linden and remain connected to a few people there, as well as in nearby Three Hills. Eunice, my longest friend (with mutual Linden origins) and a dedicatee of the novel, drove down from the Edmonton area.

We went around the circle and everyone introduced themselves and said why they were there — connections in other words. This was fun, for the memories it provoked. Then I talked about the book a little and read a few pages, and of course I just happened to have some along to sign and sell.

In the evening, I was privileged to participate in the Flywheel reading series at Pages on Kensington in Calgary. A good crowd assembled. I was impressed with the energy in the room. I think it’s wonderful when bookstores partner with writers in this way. The other readers were Kate Flaherty, Laura Swart, Jacqueline Turner, and fellow Turnstone author, Su Croll, with her new book of poetry, Cold Metal Stairs, about her father and lewy body dementia.

Then it was on to my brother John’s, where we stayed early in the trip. We talked till midnight or so and in the morning Barb sent us off with a hearty breakfast of bacon and Ruehrei, which is a kind of scrambled egg but with flour in it. Like cut-up pancake. We all grew up with it. She said her mom paired Ruehrei with sardines, but even as a child she thought this a bad match!

Now here we are, curving through rock and pines, and soon we’ll emerge to Hope and the Fraser Valley, and we’ll stop for a sandwich, and then drive the final kilometres. My heart and mind are full of gratitude for the past two weeks, and also for all of you who have read along.IMG_7342

Road trip diary (# 6)

Today we continued west along some of the very narrow red lines on our paper map, meaning the road was paved but minor and narrow. At least at the beginning. We wanted the straightest route west from Saskatoon to Red Deer, where we’re staying this night with my brother Victor and wife Doris. It took us through farm country, the landscape slightly rolling. The sky was cloud filled and it was the clouds that seemed to draw us forward. I wish I had words for clouds. There’s so much variety in them, so many different shades of white and grey, so many effects

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(l-r) Katherine, Dora, Sarah (photo courtesy Turnstone at Facebook)

Last evening in Saskatoon, I read with Sarah Ens and Katherine Lawrence in an event Turnstone Press billed “an evening with memory seekers.” We’re all Turnstone authors, Sarah with a book of poetry (The World is Mostly Sky) to be released next spring, and Katherine with a book of poetry (Never Mind) a couple of years back. We read from our work, they graciously giving me the longest time because my book is the newest, and then, with Sarah moderating, we discussed a series of questions about memory. It was a good discussion, in my opinion, and the preparation for it was interesting to me too. I haven’t thought about memory as idea in relation to All That Belongs, though it’s a big piece of it. I suppose I thought more to remembrance as activity and to the content of what Catherine remembers, which came to me as the “story” being told.

Memory is fraught with partiality and unreliability. And yet within it, we three agreed, lies potential for authenticity and even transformation. We also talked about the value of documents and objects, as well as the impact of technology upon memory seeking/keeping.

Leaving Saskatoon I couldn’t help thinking of memory fragments of the short period we lived in that beautiful city of bridges back in the early 1980s. We moved there on account of work and planned to stay, but work took us away again. We had two young sons at the time. In the busyness of life with preschoolers, I signed up for an evening course in Canadian literature at the University of Saskatoon. I remember driving down 22nd Street in our leased Grand Marquis (actually the nicest car we’ve ever had) on my way to the university, the boys safely in the care of their father and me free of them for the evening, listening to CBC-FM which at that time played mostly classical music, a memory which remains with me as a sensation of luxurious happiness.

Driving into Red Deer late afternoon we managed to get rather hilariously lost, but eventually we got to my brother Victor and Doris’s place, where we enjoyed a delicious supper and visit with them and some of their grown children.