Beyond abstinence, neither my mother nor my great-grandmother had choices. No gene had been identified. No test had been devised. Not until I was already a young woman would scientists announce that they had discovered the location, on the galactic genomic map, of the HED mutation. Thrilled to tears, my mother called my college dorm room with the news: Women could find out whether they were carriers. Mothers could discover whether their fetuses, or even test-tube embryos, would suffer from the disorder.
But on the day she called with this good news, there was something that neither my mother nor I fully understood. Now, each carrier faced a quandary. Even doing nothing was now deliberate. In preparation for her ethical test, such a woman might learn the stories of her forebears, assigning the events of those lives perhaps undue weight, and then using them as a prism through which to imagine the many possible lives of her many possible children. Eventually, she would need to speak her most private feelings about life and body and motherhood. And later, whether to a doctor or a mother or a brother or a partner or her own child, she would have to answer for her choices.
The more I thought about the blood test, the more disturbed I felt. I knew I was entering uncharted waters. If I turned out to be a carrier, it would mark a new age in my family’s genetic pedigree. Mine would become the generation of the test, the choice. Women hear all the time that they must look back to discover their family’s destructive cycle and then break it. I saw a pattern of guilt in the carrier mothers before me. How could I shed the guilt of passing an affected X chromosome to my child, when I would be the only one of these women with a true choice? My mother and my great-grandmother had the option of releasing their guilt by accepting that sons with HED were fated for them: God’s will. But with the answers available to our generation, Dan and I knew that having a son with HED would mean we chose it for him.
Praise for Carrier
"Riveting ... Carrier is a compelling read."
Liane Hansen, NPR Weekend Edition
"There are many things to praise in Bonnie Rough's deeply felt memoir ... but most striking are her compassion and her wisdom."
Jane Hamilton, internationally bestselling author of The Book of Ruth and A Map of the World
"An extraordinary book, so beautifully written. ... The memoir is a gorgeous love story, and also reads like a medical thriller—I was staying up late and rising early to read it."
Caroline Grant, Literary Mama
"In this profoundly honest memoir, Rough infuses pregnancy and the specter of terminating it with equal measures of grace."
"What is so amazing about Rough's struggle with her DNA destiny is not just the impossibly tough choices she faces in planning her own future, but the raw courage she exhibits in dealing with the choices made by the generations before her. ... This is a story that will resonate for anyone who grew up in a family with a relative suffering from a chronic illness or addiction."
Publishers Weekly (starred review)
"Bonnie Rough's incredibly intense memoir of genetic testing ... stayed with me long after turning the last pages. ... Even those with no experience with a [disorder] like HED will understand the grave decisions Rough and her husband are making and why not knowing seems, in many ways, the easier choice. It gets quite heart-wrenching, but she doesn't back away or waste time making excuses. Perhaps most perceptively, she also points out that her choice to know changes everything for her family—no one can deny this decision, not for themselves and not for future generations. ... The reader will find questions and answers, connections and concerns that they did not anticipate. ... You will be much richer for experiencing what Rough has to share, and grateful for her dedication and determination in sharing it."
"This book has a rare unflinching honesty. ... Carrier is a mesmerizing self-study of the human emotions behind all of our decisions."