Carrier: Untangling the Danger in My DNA by Bonnie J. Rough
When Bonnie J. Rough receives the test results that confirm she is a carrier of the genetic condition hypohidrotic ectodermal dysplasia, or H.E.D., it propels her on a journey deep into her family’s past in the American West.
At first glance, H.E.D. seems only to be a superficial condition: a peculiar facial bone structure, sparse hair, few teeth, and an inability to sweat. But a closer look reveals the source of a lifetime of infections, breathing problems, and drug dependency for Bonnie’s grandfather Earl, who suffered from the disorder. After a boyhood as a small-town oddity and an adulthood fraught with disaster, Earl died penniless and alone at the age of 49. Bonnie’s mother was left with an inheritance that included not just the gene for H.E.D., but also the emotional pain that came from witnessing her father’s misery.
As Bonnie and her husband consider becoming parents themselves, their biological legacy haunts every decision. The availability of genetic testing gives them new choices to make, choices more excruciating than any previous generation could have imagined. Ultimately, Carrier is a story of a modern moral crisis, one that reveals the eternal tension between past and future.
This book is for anyone who is pro-choice, a supporter of reproductive rights, or on the fence about these issues and how to deal with them. I think even pro-life supporters could take a peek at this, too! There is enough conflict in here for every reader to understand that this type of dilemma can be confusing and heartbreaking.
Rough brilliantly crafted three narratives – with hers as the main thread – in this braided-essay style memoir. The reader is introduced to the medical dilemma, hypohidrotic ectodermal dysplasia, that haunts the piece and the minds of each narrative. We meet the suffering Earl, Rough’s grandfather with HED; the passionately loving and paradoxically angsty Paula, Rough’s mother; and the worrisome, adoring, creative Bonnie (Rough). Earl’s narrative consists mostly of fiction pieced together by stories Rough’s family tells her – Rough was too young to know any of these stories when Earl died – while Paula’s conflicting, fluctuating feelings of anger and love towards her “embarrassing” father flesh out the stress family members faced in response to the disorder. Bonnie, a witness to the familial struggle, and a carrier of the gene, deals with the conflict of bringing another life into this world with her husband, Dan. There’s a 25% chance they will have a son with HED, and a 25% change they will have a carrier daughter. Armed with the latest medical technology and procedures, Dan and Bonnie try to come to a conclusion about their future pregnancies: should they terminate the pregnancy for the sake of the child’s future suffering and continuing to pass on the disorder for future generations, or should they continue with the pregnancy because they do not want to insult the history of their family and Bonnie’s brother Luke (who has HED)?
With Earl and Paula’s narratives, the reader takes a step back in time and observes the familial struggles with everyday life and unique situations – financial hardships, drug abuse, hospital crises. Bonnie’s narrative becomes more personal, a search for an understanding of the situation, the medical options, and her own self. Her sections slowly turn into obsessive worry, complicating the dilemma more.
I think this was very well-written! Rough crafted a tough, sensitive situation and explained her decisions thoroughly, tying all the loose ends and answering every argument. It was comforting to read this piece without having “pro-life!” or “pro-choice!” shoved down my throat. She provides her thoughts, facts, and detailed descriptions of every step of her journey to the decision.
Goodreads: 3.91 of 5