The test works perfectly for my book! On page 99 of Carrier: Untangling the Danger in My DNA, I’m 27 years old and getting a taste of what my road to becoming a mother might feel like—a perfect slice of the “quality of the whole.” My blood sample was still in the lab for DNA testing, to determine whether I risked passing a rare genetic disorder to my future children. I had just published an essay in The New York Times “Modern Love” column about the dilemma my husband and I might face: If I turned out to be a carrier of hypohidrotic ectodermal dysplasia, or HED, any sons we bore risked being born with a lack of sweat glands, only a few tooth buds, sparse hair, a slightly unusual appearance, and extra susceptibility to illness and infection. HED was not necessarily life-threatening. But, as an exploration of my family tree had begun to reveal, it could be profoundly and painfully life-altering.Read an excerpt from Carrier, and learn more about the book and author at Bonnie J. Rough's website and blog, The Blue Suitcase.
The day my essay appeared in The New York Times, I told four million readers that if Dan and I decided to avoid having children with the disorder, these were our options: We could remain childless, consider adoption, use IVF and discard certain embryos, or become pregnant naturally and test our fetus near the end of the first trimester, possibly facing an excruciating choice.
I began receiving e-mails by the dozen. Even though half of the e-mails validated my indecision by grappling with the same question I asked—should fate or medicine shape our babies?—a great many letters came from readers who believed they knew exactly what Dan and I should do. One called our in-vitro option a “no-brainer,” comparing the cost to the price of a car. Several others, all adoptive parents, called adoption the clear choice for us, implicitly agreeing that HED was best avoided. Other letter writers begged us to forget about testing and allow fate to decide as a way of protecting the diversity of our gene pool. Many readers didn’t care what we did, as long as we ditched the abortion option.I wanted to argue my side, but I’d had my chance. I typed a few heated responses, but never sent them. For a few days, I felt overcome. Responses continued to flow in, all different, all strong, all personal. The only practice I’d had in fielding the commentary of riled readers had been in a few years’ experience writing for a little newspaper with a circulation of twenty thousand—nothing like the shelling I was taking now. Still, I was glad I had written the essay before Dan and I had made up our minds about what we would actually do if I turned out to be a carrier. I imagined all the weighing-in I would have invited by revealing an actual decision, as if I were offering it up for judgment and asking for a mass verdict.
With my essay, I had hoped to describe a moral dilemma and give a personal account of how it might look to approach such a problem thoughtfully. But scores of people treated my real-life story as we tend to treat the movies: She should never have said that. He could have been more courageous. There was too much scenery and not enough sex. It should have been different in the middle. Why couldn’t they just sell everything and start over?
But, I reminded myself, my readers weren’t the only ones who approached the essay with a cinemagoer’s mentality. The only way I could write it in the first place was to calm myself the way I often did at the movies: by telling myself, It’s not real—I don’t have to believe it if I don’t want to. At least not yet.