Monday, April 25, 2011

Bonnie Rough's 'Carrier' and reading genes like tea leaves

Originally printed on September 16, 2010.

Bonnie Rough must have had one of the most productive MFA defenses ever -- if only because the experience left her knowing exactly how to transform her thesis, "What We Become: Bushnell to Greeley," into her first book, "Carrier: Untangling the Danger in My DNA."

Even before enrolling in the University of Iowa's Nonfiction Writing Program, Rough knew she wanted to tell the story of her mother's complicated childhood. She also knew telling that story would require going into details about her grandfather, Earl, who suffered from a genetic condition, hypohidrotic ectodermal dysplasia, that left him with sparse hair, few teeth, an inability to sweat and a lifetime full of infections and treatments.

During graduate school, Rough made use of Iowa City's central location for many research trips and pilgrimages to the Midwestern sites of her family history. She soon learned about the shooting of one of her grandfather's friends and initially thought the mystery surrounding that death would become the heart of Earl's story.

Viewing herself more as an essayist who writes short, brainy pieces that are unexpectedly scientific and creative -- she is working on an essay right now, for example, that connects Van Gogh and Armageddon -- Rough was well suited to dive into the medical literature on HED. She then marshaled her literary talents to round out her grandfather -- who had been demonized by the family -- as a character.

In the process, she was looking to explain:

• What made her grandfather into such a "pain in the neck"?

• What made her grandmother fall in love with him in the first place?

• And what legacy did his addiction and death leave on the family?

When she was ready to begin writing, Rough found herself telling the story from her grandfather's first-person perspective.

"It wasn't really an active decision on my part," Rough said. "Perhaps it was an expression of the empathy I was trying for."

Rough was passionate and productive in transcribing her grandfather's story, and soon she had enough material to submit for her MFA thesis. But as her defense rolled around, she didn't think she had an answer for the standard questions she knew her committee members would ask: "Why does this story matter to you? And why are you telling it now?"

Although Rough didn't fully realize it at the time, she already had written the answer to those questions. About the same time as her defense in 2005, Rough published an essay in the New York Times about the new ethical decisions she and her husband, Dan, faced now that technology was available to determine whether she was a carrier for HED. Should she risk passing on the disorder to any children they may decide to have?

"But now, in the 21st century, 'God's will' is not a force Dan and I have to accept. 'What is our will?' we ask ourselves," Rough wrote in her essay, comparing the decision facing her to the decisions that her ancestors faced.

Luckily, Rough's committee had read the essay before the defense. And when she failed to come up with a satisfactory answer to the standard questions, one of her committee members -- David Hamilton -- helped her connect all the dots.

"He asked, 'Isn't it true that your grandfather represents your own worst fears for your children?'" Rough said. "And at that moment, I knew what my book needed to become. I knew I wasn't finished with the story yet. ... I had another four years of living to do before I could bring the book to an end."

And it's because of Rough's decision to combine her grandfather's story with her own that "Carrier" now is receiving such positive attention and praise from all sides of the bio-ethical divide.

Some reviewers were initially skeptical of the appropriateness of Rough's first-person re-creations of the past, but those passages work well precisely because they highlight and provide historical context for the tough ethical decisions faced by Rough and by countless other people who want to peek at what their genes portend about their progeny.

Press-Citizen Opinion editor Jeff Charis-Carlson can be contacted at jcharisc@press-citizen.com or 319-887-5435.

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