I have started riffling through old family photos and framing them. I have a full shelf of dead family members arrayed in my living room. The men don’t interest me. I haven’t bothered to remember their names. It’s the women I want to see. After my deleterious genetic results, I became obsessed with tracing the mutation back through my family tree. Through a combination of blood tests and guesswork, I can follow it back four generations to my great-grandmother. According to family lore, she never developed cancer herself, but her sisters all did. She must have had my mutation.
I found her picture in a warped old photo album that my grandmother gave my father when she was dying of her third round of BRCA-related cancer. In it, my great-grandparents are standing in a field with broad smiles on their faces (“near the time of their marriage” my grandmother has written). My great-grandmother is wearing prim spectacles and a fox fur stole. She was a farm girl, so I wonder if that stole was a prized possession. I search her face for family resemblances, but I cannot find any trace of myself in her dark hair and eyes.
I emailed my oldest living relative, my grandmother’s brother, and asked him what he could recall of previous generations of family medical history. He tells me that my grandmother was a stubborn child who grew into a difficult woman. That my great-grandmother was as strong as a man and fond of proving it. That my great-great-grandmother was revered as a saint by her many children.
I want to know more about these women and their sisters, mothers, aunts, cousins. I want to know their medical histories, their feelings, their options, and their choices. I want to know if they realized that something was very wrong with our family and if they noticed the patterns of cancers strewn across the family tree. I have so many questions for them that can never be answered; I speak to the past, but it does not speak to me.
The genetic counselor tells me that I have a founders mutation. If I could, I would trace it back across the centuries. My great-grandmother and her sisters must have inherited it from either their mother or their father, but I don’t know which one of them was a carrier. I have pictures of them, my great-great-grandparents, and I have pictures of my great-great-grandfather’s parents, who were born well before the U.S. Civil War. I can’t know for sure which of them had the faulty gene. I want to trace it back just one more generation, but I realize that even if I could parse out where my great-grandmother got the mutation, then I would then want to follow it back still further.
I can’t fully explain this desperate desire to trace the mutation back through the family tree. It’s a visceral longing. My deleterious test results have made me feel profoundly connected to women who died decades before my birth, who could not imagine my existence or the mutation we all have shared. I carry their faulty genes, their missing alleles and misread chromosomes, in every cell in my body.
Looking at their pictures, I do not find my large eyes or pert nose, but across phenotypical difference and across the many years of births, marriages, and deaths, this piece of them has come down to me unadulterated. The odds were against it. If every one of us born of a parent with a mutation has a 50% chance of inheriting it, then that the genetic coin had to come up BRCA+ every single time to get to me. Thinking about these women makes me feel less alone.