I have been reading the writer Bonnie J. Rough's charming and evocative blog The Blue Suitcase for some time now and was very excited to receive a copy of her new memoir Carrier: Untangling the Danger in my DNA. I'm in the middle of reading it right now and have to say that it is a moving, riveting read and one that I can hardly put down. As the carrier of a rare genetic condition, Bonnie faced a difficult decision when she and her husband decided to start a family. The book grew out of Bonnie's wish to untangle the complicated details of her family's past, and, as the back of the book says, "Bonnie and her husband find themselves faced with a modern moral crisis."
I am excited today to post this interview with Bonnie and also offer a copy of her book in a giveaway! Please leave a comment below and I will draw a winner this Friday. And to buy a copy of her book, go on over to your local independent bookstore or my blog sidebar where I've posted some of my favorite books. You can click there and go directly to Amazon, I think.
What is the genetic disorder you carry?
Bonnie: That’s almost always the first question I’m asked. People see my dilemma right away—whether or not to risk having a baby with a disorder—and it’s natural to think the answer hides in the set of symptoms. How bad do they seem? The main symptoms of hypohidrotic ectodermal dysplasia (HED) are sparse hair, few teeth, no sweat glands, and a slightly unusual facial appearance. There are often secondary problems, including chronic respiratory sickness and other kinds of infection. HED is X-linked, which means that female carriers (like me) have no symptoms, but may give birth to sons who are fully affected. Compared to many disorders, HED may not sound so bad—and for some affected individuals, it may not be. That was part of what confused me initially, motivating me to learn more about people in my family who had suffered from the disorder—especially my grandfather, Earl. Researching his life story, I discovered how the disorder turned a brilliant man into a tragic figure. It became clear to me that even if HED isn’t directly life-threatening, it can be profoundly life-altering. Dan and I had to decide how far we’d be willing to go in order to keep our children’s lives free from that risk.
What choice did you have?
Bonnie: That question is exactly what makes Carrier so timely. I belong to the first childbearing generation with access to genetic testing for a vast number of known disorders. That means before conceiving, parents can have their DNA tested in order to learn what problems we risk passing to our children. From there, if biological children are still desired, we have some remarkable yet troubling options. There’s in-vitro fertilization (IVF) with preimplantation genetic diagnosis (PGD), in which doctors genetically screen test-tube embryos and implant only healthy ones in hopes of creating a successful pregnancy. For many couples, this process is too expensive, too physically grueling, or too emotional. Another choice is to become pregnant the usual way, and then to test fetal cells in the 11th week of pregnancy with chorionic villus sampling (CVS) or in the 15th week via amniocentesis. But then, if test results reveal a problem, a couple might face an excruciating choice.
Like every genetic disorder, HED is relatively rare—it affects about 1 in 10,000. What does Carrier offer readers without known genetic problems in their family?
Bonnie: Carrier is about a modern-day couple grappling with the past in order to take positive steps into the future. This is a journey that almost everyone experiences at some time in life—especially when parenthood looms on the horizon. Carrier is the story of a truthful person searching deeply to find the best solution for a heart-wrenching problem. The specifics of the predicament are mine, but the journey is universal.
How do you expect people to react to this book?
Bonnie: Before Dan and I made our choices, I published a personal essay about our predicament in The New York Times. I was totally unprepared for the flood of e-mails I received. Women and men from all over the country wrote to share their stories. Many offered me comfort, and others thanked me for the solace I had given them as they grappled with their choices. About half of the people who wrote me thought it was perfectly clear how Dan and I should proceed to start a family. One called our in-vitro option a “no brainer.” Many said adoption was the clear choice for us. Others thought we should skip testing and allow fate to decide. Quite a few readers didn’t care what we did, as long as we ruled out abortion. I think the huge response showed how many lives are touched by these issues now. And most importantly, the range of reactions proved that these decision-making processes are deeply personal and unique within every family.
In your memoir, in addition to your own voice, you write in the voices of your mother and your grandfather. How do you justify this as nonfiction?
Bonnie: As I looked ahead toward starting a family, I felt a vital need to examine the past. I needed to understand my grandfather’s experience of HED (he died at age 49, when I was a baby). I also I wanted to explore how witnessing her father’s misery shaped my mother, Paula, as a person. Every family has its unspoken stories, and with my mother’s help, I worked very hard to bring our past to light before I made any choices about having my own children. Using the voices of Earl and Paula alongside my own narration gives Carrier the perspective and empathy I found in the course of my research. Obviously, I had to use my imagination to recreate voices and scenes from the past. But when I was writing Carrier, I wasn’t inventing a new story, which would have been fiction. On the contrary, I focused on recovering a particular story—one that began shaping me and my children long before our time.