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300 pages, Hardcover
Published September 24, 2019
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.
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.
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.