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 (# 5)

Tuesday, October 8, Hague, Saskatchewan

In B.C., I defend Winnipeg weather, which tends to be misunderstood, and usually I do so in terms of its sunshine. According to this comparison of Canadian cities, Winnipeg tops the chart in annual sunshine. The four days we just spent there, however, failed to reward my fond defence. It was grey and moist throughout. But Sunday evening, the sky cleared somewhat, and yesterday (Monday) we were on the road again under bright sun and summery warmth. All day we enjoyed that light and the beauty of the prairies, a modest beauty, but beauty for sure, mostly flat but valleys and waves of land here and there, stands of trees turning yellow (with occasional hints of red), grazing cattle, geese in long lines overhead, stubble in rows and dotted with bales.

We took the Yellowhead highway to Saskatoon, which took us through Neepawa, which I don’t drive through without thinking of Margaret Laurence. I’ve been re-reading her work this year, as well as reading the Africa books, which I hadn’t read before. She was an enormous inspiration and influence in my reading/writing coming of age. (About an earlier visit to Neepawa here.) We passed through numerous other towns, some large, some small, many with truck and implement dealerships, gleaming vehicles and machines on display. And always the vast sky, set back and cloudless, insisting that we focus on the landscape.

We arrived in Hague, where my sister Linda lives, in time for supper, and spent the evening visiting with her. A bit of panic ensued when I saw my MacBook was almost out of power but I couldn’t find my charger. I figured I must have forgotten it in the last bedroom we occupied. How dependent we get on these instruments of information and communication! This morning I found it, packed in the place it wasn’t supposed to be packed, and all is well, it’s juicing up while I write this and H. and I are drinking our daily morning yerba mate.

We’ll spend this day with my elderly mother (97) at the Mennonite Nursing Home in Rosthern, and the evening at a reading event in Saskatoon. More on that after it happens!

Road trip diary (#4)

I’m still “keyed up,” which is a word I remember my parents using for excitable children, because tonight was the book launch, and I was nervous, but it went well, and it’s done, so here I am to put it down. Feeling grateful. About 120 people attended, which is a terrific number. It touched me to see people from many parts of my earlier life: fellow writers, friends, cousins, former work colleagues, and some friends of friends. It’s no small thing when people come out in support and then take the time to read one’s work. (It’s not as if there isn’t plenty of other reading material in the world.) And the carrot cake was delicious too!

35503-PbN-75-fall-winter19-20-cover-web_600_757_90Mid-afternoon I learned that All That Belongs is featured on the cover of the current issue of Prairie Books Now and that a review of the book had appeared in the Winnipeg Free Press today. Both were lovely surprises. I haven’t seen the PBN article yet or read the review but my sources told me it was good, which was enough to get me through the evening without worrying about it. Some writers don’t read reviews, either good or critical ones. I’ll read this one eventually, but today was not the day. I needed to focus on the evening event.

H. and I had a great visit with long time friends over breakfast in the morning, and yesterday we had excellent visits too, with my elderly aunt, a cousin and some of her children, and a niece and her family. This afternoon I attended Faith in Form where friends Sarah Klassen, Angeline Schellenberg, Joanne Epp, and Sally Ito were among the presenters. These women have been writerly companions for me. So these days have been filled with goodness and tomorrow we’ll go to our former church and do more visiting with friends. But truth be told, the main deal in this diary entry is that the first and biggest launch is over and on account of that I’m relaxed and relieved and happy in equal measure.