As a child, I listened to the women in my family tell stories of the past – grandmothers, aunts and cousins sitting around the kitchen table with my mother, sometimes laughing until they cried, sometimes sobbing through words of grief. They spoke of relatives who lived before I was born – people who came from nothing, who faced great hardship, who died too young. The women in those tales stared down death, looked after the sick, and conversed with fate. They spread the truth through story, even when others didn't wish to hear it. This is how I learned that stories have power – to make sense of the world, to give voice to dreams, to nurture hope and banish fear. What I didn't know then was that those stories would provide me with what I need to navigate life with Lynch syndrome. Sometimes the best advice on how to live comes from listening to the dead.
Throughout all of her growing-up years, novelist Ami McKay knew that members of her family had a history of dying young from a number of gut-centered cancers. She eventually learned that her immediate family line had been studied for over a century (going back to her great-great-aunt Pauline Gross, after whom the medical label “Family G” was named) in an effort to prove the theory that certain cancers are hereditary (an apparently controversial theory before genetic testing could prove it out). Having spent her adult life investigating her genealogy and its unique medical history, and assembling all that she has learned into this book, McKay's Daughter of Family G serves as a thoughtful memoir for herself and her family line, provides a fascinating look at the history of cancer research (and its wider implications), and explores the very personal ramifications of dealing with this particular diagnosis. The storytelling moves between the distant past (I especially enjoyed McKay's decision to write Pauline's parts as creative nonfiction; narrating her story like a novel instead of simply duplicating what is known of her from the records truly brought Pauline to life as a real, feeling person), stories from McKay's personal life history, and stories from the present as McKay faces Lynch syndrome as an adult. This is a book with plenty of intriguing science, but more so, this is a book with a beating heart: I was constantly touched by the humanity with which McKay imbues her family members – whether quoting from her parents' love letters or describing how one prepares for the results of genetic testing – and I was surprised to find myself touched to the point of tears more than once. This is everything a medical memoir should be and I appreciate McKay's courage in sharing her story with the world.
I try to imagine what it must have been like to live in a eugenics-infatuated America as a member of an “unfit family”. Did the family members who left Michigan think they could escape the past by starting over someplace new? That was the path their ancestors had chosen by leaving Germany. Was that what I'd done when I'd moved to Nova Scotia? My research to this point had led me to believe that after Weller's report in 1936, certain branches of the family made a conscious effort to “forget their blood” and abandon their roots – even those who'd chosen to stay close to home.When Pauline Gross shared her fears of dying young of cancer to a pathology professor, she couldn't have known that her story was falling on the most receptive of ears: Dr Aldred Scott Warthin was looking for a topic with which to make his mark on the medical field, and with the aid of Pauline and the meticulous family records that she was eventually able to assemble, Warthin would write papers and serve as the keynote speaker at conferences that would thereafter seal his reputation as “the father of cancer genetics”. Pauline also couldn't know that Dr Warthin would eventually, based partly on her own family's evidence, become a vocal eugenicist who would advocate for the sterilisation of those with “inferior” hereditary material. While it goes without saying that the eugenics movement was reprehensible, it remains a thorny question to knowingly bring children into the world when there's a 50-50 chance of a parent passing on the MSH2 mutation that causes Lynch syndrome (overall, McKay seems to conclude, like she has Pauline saying back in the 1800s, that any stretch of life is worthwhile to those living it). Genetic testing is now available to easily identify those with the mutation, and McKay was surprised to discover that even within her immediate family, not everyone wants to participate: While on the one hand, a positive test would give individuals the information they would need in order to direct their own health care as “previvors” (yearly colonoscopies, evidence to push back at a doctor who might dismiss symptoms as benign), some family members feared that a positive result could cause them to lose their health or life insurance. With the rising popularity of ancestry-based spit swab sites, it's probably not undue paranoia to wonder at just what is being done with all that genetic information.
There's no room for “why me?” with Lynch syndrome. The mutation is only part, not all of who I am. Rather than let it rule me, I choose to fold the rituals of annual screenings and tests into the cycles and rhythms of my life. If I give the disease the space and attention it needs (no more, no less), just as my mother did, then I'll give myself space for everything else – hope, love, dreams, bliss.In the end – and in no small part, because of the way her loving mother had lived her own shortened life – Ami McKay is able to write a memoir about living with a death sentence (she, and everyone else with Lynch syndrome, will eventually suffer from colorectal, pancreatic, or reproductive organ cancer) that sings of life. McKay's story is fascinating, touching, and well told.
