This memoir of one woman’s struggle with her DNA’s legacy and its effects on multiple generations of family is “amazing” in “the raw courage she exhibits” (Publishers Weekly, starred review).
When testing reveals that Bonnie Rough is a carrier of a genetic condition known as hypohidrotic ectodermal dysplasia, or H.E.D., she begins a journey into her family’s painful history and faces agonizing moral decisions about her own future as a parent.
Characterized by what look like superficial complications—unusual facial bone structure, an inability to sweat, lack of teeth or cone-shaped teeth, and sparse hair—H.E.D. is a rare condition with surprisingly serious repercussions for its sufferers. In this emotionally honest exploration of the disorder’s effects on her own family, Rough writes in the voices of her grandfather Earl, who had the condition, and her mother Paula, who inherited the gene and transmitted it to her son.
These first-person accounts of living with the effects of H.E.D.—and the damaging ways Earl tried to fight it, which led to him dying penniless and addicted to drugs—are marked by their raw honesty and anger. Knowing that the disorder is transmitted by mothers to sons, Rough and her husband must face their own excruciating choices about future parenthood, and confront how the past will inevitably shape their 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.