Carrier: Untangling the Danger in My DNAby Bonnie J Rough
At first glance, H.E.D. seems only to be a superficial condition: a peculiar facial bone structure, sparse hair, few teeth, and/i>
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.
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. A carrier of the rare genetic condition hypohidrotic ectoderm dysphasia, which condemns sufferers to a lifetime of debilitating infections, chronic respiratory ailments, and recurring skin rashes, Rough reports that her grandfather and brother were scarred by the disease, leaving their wives, mothers, and daughters helpless and angry. She reflects on the story of Earl, her brilliant grandfather, who died a penniless drug addict. In alternating chapters, she writes in the voices of Earl and Paula, her mother. These vignettes serve as poignant portrayals of their pain, not simply because of a crippling disease, but also the powerlessness they feel over it. "Should he just bear all of this?" Earl's wife asks Paula. "Yes," she replies, "for us." 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.
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Meet the Author
Bonnie J. Rough holds an MFA from the University of Iowa. Currently a Bush Artist Fellow, she has taught at The Loft Literary Center and is also a trained birth doula. Her writing has appeared in The Sun, the Modern Love column of The New York Times, and elsewhere. She has traveled extensively and currently divides her time between Amsterdam and Washington State. This is her first book.
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