Carrier: Untangling the Danger in My DNA

by Bonnie J Rough

Overview

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.

Product Details

ISBN-13:	9781582435787
Publisher:	Catapult
Publication date:	04/27/2010
Pages:	324
Product dimensions:	5.64(w) x 8.28(h) x 0.83(d)

About 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.

Editorial Reviews

Starred Review.

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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Publishers Weekly

Praise for Carrier

"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 . . . 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)

"Rough a fine writer with a talent for portraying subtle family dynamics. When she writes as herself, she is often quite moving-particularly when she deals with the possibility of passing HED to her unborn child and her pain as she receives the fateful genetic-test results. An . . . engaging memoir that provides a much-needed window into how serious genetic conditions affect families." --Kirkus Reviews

"Rough's first-person account of carrying the gene for hypohidrotic ectodermal dysplasia includes monologues by her grandfather Earl, who died when she was a baby. His illness from the genetic disorder--characterized by sparse hair, cone-shaped teeth, inability to sweat, and distinctive facial features, including a deformed nose--is carried invisibly by mothers and passed to sons . . . Readers will be moved by her emotional pain, but equally affecting is Earl's . . . his is the haunting voice of the past that overshadows the present in this compelling read." --Booklist

"Bonnie Rough's search is a myth for our time, and her book a necessary read for anyone who faces the implacable destinies of inheritance." --Honor Moore, author of The Bishop's Daughter

"Bonnie Rough has crafted a memoir like no other: lyrical, investigative, haunting, and tender, all fueled by a powerful imagination and fiery intelligence unlike any other in the literary cosmos. Carrier is boundary-busting nonfiction at its finest. This is a book I will not only recommend widely but teach for years to come." --Robin Hemley, author of Do-Over!

"There are many things to praise in Bonnie Rough's deeply felt memoir, in her report from the brave new world, but most striking are her compassion and her wisdom as she navigates the harrowing choices, the complex choices that medical technology allows us." --Jane Hamilton, author of When Madeline Was Young

From the Publisher

In her debut, Rough explores her family's history with a rare genetic condition and how it has affected her life. The symptoms of hypohidrotic ectodermal dysplasia (HED) include the inability to sweat or produce tears, and other physical traits such as sparse hair, few and strangely shaped teeth and dry, nearly hairless skin. In the X-linked form of the condition, the gene is carried by females and manifests in males. The author's grandfather and brother suffered from the condition. Rough's mother is a carrier, and, as she discovered, so is Rough herself. A large part of this highly personal memoir deals with the author's quest to find out more about her HED-affected grandfather, Earl. He underwent a lifetime of breathing problems and constant infections, aggravated by mucous-membrane problems, and likely a suppressed immune system. He also developed a severe drug addiction brought on by the pain of his illnesses. At one point, he was given shock treatments in a psychiatric hospital; later, his wife divorced him. He eventually died at age 49, broke and alone. The author ably shows how HED devastated Earl's and his family's lives, but the story's effectiveness is compromised by some of Rough's stylistic choices-in particular, the narration of much of the story from Earl's first-person point of view. The author also writes that she re-created conversations and details using "disciplined imagination," an odd designation. Nonetheless, Rough a fine writer with a talent for portraying subtle family dynamics. When she writes as herself, she is often quite moving-particularly when she deals with the possibility of passing HED to her unborn child and her pain as she receives the fatefulgenetic-test results. An uneven but often engaging memoir that provides a much-needed window into how serious genetic conditions affect families.

Kirkus Reviews