Carrier

Starred review from June 21, 2010
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.

March 1, 2010
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 fateful genetic-test results.

An uneven but often engaging memoir that provides a much-needed window into how serious genetic conditions affect families.

(COPYRIGHT (2010) KIRKUS REVIEWS/NIELSEN BUSINESS MEDIA, INC. ALL RIGHTS RESERVED.)