Bonnie J. Rough's memoir, Carrier: Untangling the Danger in my DNA, is a story about family legacy and the sometimes excruciating choices women and couples must face as they contemplate becoming parents. Rough, a Seattle native, is a carrier of the genetic disorder hypohidrotic ectodermal dysplasia (HED), which her brother has and her grandfather had. Her memoir delves into the past, into the lives of her mother and grandfather, and propels us into the future, into the possibility of her own children having this disorder. Rough earned an MFA from the University of Iowa and her writing has appeared in several anthologies and many periodicals, including The New York Times, The Sun, and The Iowa Review. After this interview was conducted, she relocated from Amsterdam to Seattle with her husband and daughter. Rough spoke with Literary Reflections Co-editor Kate Hopper about the genetic disorder, reproductive rights, and the journey she underwent to write Carrier.
Kate Hopper: How and when did you begin working on this book?
Bonnie J. Rough: Carrier actually began in 2004 as a story about my mother and grandfather. I was halfway through graduate school, working on my MFA in nonfiction, and it was time for me to start working on a bigger project. At that time in my life, the best true story I knew was the story of my mother's childhood in the shadow of her father's rather tragic life. He had been born with HED in the most arid part of Nebraska, where he grew up as a "small-town oddity" (those are his own words). As a young man, he drove himself to ruin with his intense need to prove himself. He was only 49 when he died poor, estranged from his family, and addicted to drugs. My mother wasn't even 25 when he died, and in so many ways she was still a girl looking for a stable, caring father. For my thesis I researched and wrote their story, without realizing how it was eventually going to connect to my own life.
Right around the time I was finishing my thesis, Dan and I were taking our first information-gathering steps toward eventually having children. I published an essay in the New York Times Modern Love column
about the genetic disorder we found out I carried, and the dilemmas we would face when we decided to start a family. Still, even though my grandfather Earl suffered from the disorder I carry, I hadn't made the connection between my own story and the stories I was finding in my family tree. In my thesis defense, my professors kept asking me why I needed to tell this story about my forebears. Why it mattered to me, and why it mattered now. I kept thinking, "Well, because it's a great story -- why not?" But finally one of my professors, who had read my New York Times essay, asked me point blank: "Isn't it true that your grandfather's story represents your own worst fears for your children?" I knew instantly what my book needed to become: my journey to motherhood alongside the voices of my family's past. It was a thrill to see my book so fully in that moment! But at the same time it was a tough pill to swallow, because I couldn't write the rest of the book yet. I still needed to live it.
KH: Can you talk a little about the genetic disorder you carry?
BJR: I carry the genetic condition hypohidrotic ectodermal dysplasia, or HED. Symptoms of HED include sparse hair, few teeth, no sweat glands, and a slightly unusual facial appearance. There are also 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 with each pregnancy there's a twenty-five percent chance of conceiving a son who is 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 who had suffered from HED -- 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.
KH: You use a combination of research, interviews and your imagination to tell your mother's and grandfather's stories. But there were sections of the book where I was especially struck by exactly how much research you must have done; for instance, the scenes in which Earl undergoes electroshock therapy. The way this treatment is administered has changed drastically over that last half century, but your description of how it must have felt for him feels so authentic to me. How much research did you have to do in order to write this book?
BJR: I'm such a research junkie that sometimes I run the risk of researching a project to death, and then I never end up writing anything. But for this book, my passion for research served me very well. I did go to great lengths to research my family history. I traveled all over the west, on three separate research trips. I dug up legal documents, court papers, medical records, business transactions, family photos, and my mother and grandparents' personal letters and notes. I interviewed a lot of people -- my family, my grandfather's old friends, the even the families of my grandfather's deceased acquaintances. I interviewed law enforcement, doctors, even a coroner. I made sure to walk on the old farm land, visit the old family homes, smell the earth, feel the heat in the air. But I also wasn't afraid to use my own impressions, experience, and intuitions to connect the dots in my grandfather's story where concrete evidence couldn't take me all the way with perfect clarity. Yes, that required imagination, but I did not consider it a time to invent or embellish. These were stories that I needed to put my own personal trust in, because they would be the touchstones for some of the most significant personal decisions of my life.
KH: You use alternating first-person chapters to tell the stories of your grandfather and your mother in addition to your own story. How did you decide on this structure?
BJR: From the beginning of this project, I had a strong sense that I needed to inhabit these lives in order to feel their experiences as meaningfully as possible. I wasn't doing this for the book. I was doing it for myself. I had serious choices to make about my future and the future of my children, and I felt compelled to not only look, but also feel and listen into the past. I had to make sure I was getting every message, every warning, every encouragement, and every story available to me. When it came time to write everything down, it felt perfectly natural to use the first-person voices that I had come to know so well in my own mind. As far as arranging the pieces, I would say they were shifting around and popping in and out of the manuscript all the way up to a few months before publication, when it finally seemed like each piece had fallen exactly where it needed to be.
KH: The voices of Earl and your mother, Paula, feel so authentic to me. Earl died when you were still a baby so you didn't really know him. How was creating a voice for him different than creating a voice for your mother, to whom you are close?
BJR: They were very different tasks. Earl's voice took much longer for me to hear. As you said, I know my mother well and we spoke almost every day as I worked on this book. Her voice is naturally dramatic and effective. There were times when I would take paragraphs directly from a phone chat or an e-mail she wrote. Her voice was in so many ways ready-made. As for my grandfather, I had to get to know him first. It took about a year of research for me to feel comfortable putting down words from his perspective. I needed to wait until his character came to life in my mind and began speaking in full sentences, in full stories. I think it was a matter of learning enough about my grandfather to discover how I felt about him. Then I could give his voice and character the fullness it deserved. I wanted to be sure I was bringing him back to life as a multi-dimensional person -- not just the major pain and even villain his wife and others in the family had come to see him as. I knew there was a reason my grandmother loved him even though she was forced to push him from her life. I knew there was a reason it broke my mom's heart not to have a better relationship with her father. He was a tortured, brilliant, difficult man who loved deeply and was worth loving, and I wanted to make sure I found everything I could about that side of my grandfather before I applied my own emotions to the recreation of his voice.
KH: One of the things I most admire about this book is how thoughtfully and honestly you write about abortion. In Carrier, when you are newly pregnant, you write, "I felt angry that my society had made a taboo subject of one of the most important journeys of my life. An abortion -- a story that would belong to me, shape me, become a part of me -- would henceforth divide people into those who could handle a relationship with me and those who couldn't. It seemed I would have two choices: I could live as if I had a terrible secret, or I could live marked." How did you feel writing about a reproductive choice that is politicized and so often shrouded in secrecy and shame in the U.S.?
BJR: As I worked on this book, I felt I was in risky territory just writing down the fact that my husband and I would be willing to consider abortion. That was part of our journey: moving from a place where abortion was such a taboo that we almost ignored that possibility, to realizing that it needed to be very much on the table for us. By the time my book found its publisher, I was more comfortable with my views on our choices and the plans Dan and I had made. But my life had just taken another turn, and abortion was no longer just a possibility for us. It had become one of our experiences. So in the final draft of the book, after it was already under contract, I wrote about abortion from a newly personal perspective. It worried me all over again. About six months before publication, I was having trouble sleeping at night, wondering if the exposure would be too much for my family. But by the time the book was released, those fears had passed. I was ready, and I felt secure that I was telling my own story and no one else's. If nothing else, motherhood had shown me that family is personal business, and even though I would never risk telling anyone else what they should do in their reproductive lives, I felt comfortable that I could say just that: every family deserves a chance to create their own story without being judged.
KH: You currently live in Amsterdam. Has living abroad affected how you think about women's reproductive rights?
BJR: Very much so. Since we moved to Amsterdam I've been amazed to discover that abortion is not a taboo subject at all. I felt so alone during my tentative pregnancies in the U.S. There were so few people with whom I felt I could safely share my limbo. I never knew if the word "abortion," or the fact that I might consider having one, could end the possibility of a friendship with a neighbor or acquaintance, or even sour a good friendship. But in Holland, abortion isn't politicized. It's considered a significant personal medical choice like many others. There's compassion for families who have that experience, but not much judgment as far as I can tell. I feel like I could casually share a tentative pregnancy with a Dutch mom at the neighborhood park, and she would be understanding and kind and not make an earth-shattering big deal about it. She would probably tell me a few stories about other women she knows who experienced trials of wait and worry, and maybe even loss, in their pregnancies. My experience in Holland has shown me so clearly that the "abortion debate," which I used to think had a capital-A and a capital-D and meant the same thing to everyone everywhere, is actually localized. I look forward to a time when American families share more openly with one another. I think the aggregate of our stories is the only force loud enough -- and real enough -- to drown out the political racket.
KH: You are so respectful and loving towards your family throughout Carrier, and I'm wondering how you navigated publishing a book that not only revealed so much about you and Dan, but also so much about their lives?
BJR: One fortunate thing I did was to wait until the manuscript was almost ready for publication before I shared it with my family. That gave me the many months I needed to be sure I had been as thoughtful and respectful and honest as possible. And conservative, where that was necessary. Because you know how it is -- in those first, early drafts, you can't hold back. You have to say everything, and decide later whether that's really what you think and whether those stories are all necessary to the book. After many, many revisions, I gave my family veto power over anything in the book that didn't sit right with them. I think that's always the best way to go -- in my experience, that veto power, if it is truly given, is rarely used. It's more likely to lead to useful little corrections or helpful clarifications.
KH: Memoirists who are parents must decide how and when to share their work with their children. How do you feel about leaving the legacy of this book for your daughter, Josephine?
BJR: I get asked that question a lot, but for some reason it hasn't really been a big issue for me. Maybe I'll learn my lesson later, that I should have been more careful or reserved. But as a mother I do try to challenge myself to talk about life with my daughter just beyond my comfort zone. I think there's a chance she won't be interested in reading her boring old mom's book. Or she might read it when she's eight and want to talk about certain aspects of it, then read it again when she's older and different aspects strike her. I have no intention of hiding the book or our family journey from her. I think if I were to get my wish, she would find the whole thing ho-hum because it wouldn't be news to her.
KH: What kinds of reader responses have you been getting?
BJR: Stories. I've been meeting with book clubs whose members fill the room with their unforgettable stories. I've received some extraordinary e-mails from women with beautiful, empowering stories of their losses and triumphs as females and mothers. The fact that I haven't heard much ideological criticism makes me feel I succeeded in telling my story honestly, without making an argument that causes people to feel defensive. I have a Catholic friend who is a theology PhD whose praise for the book meant so much to me. He said he admired the way I was honest about every detail of my experience (as I perceived them), without regard to which ideology those details may or may not serve.
KH: Your writing is so gorgeous, so lyrical. Who have been your literary influences?
BJR: Thank you, Kate! Writing in different voices for this book gave me opportunities to stretch in terms of prose style. But one of the hardest lessons for me to learn has been to trust in my own plain-Jane narration of my own everyday life. I used to think my own voice wasn't special enough to tell a story -- maybe that's part of why I needed to start this project by inhabiting other voices. But over the years, I've gained confidence in my own voice. That means I trust more in my own thoughts, and I'm less anxious about making mistakes. I think becoming a mother has given me that confidence and self-acceptance, and it's been such a good thing for my writing.
As far as literary influences...yikes. That's always such a hard question. Lately I've been thinking a lot about Michael Ondaatje's books. I've read almost all of his books, and that's more than I can say for most other authors (except maybe Roald Dahl or Beverly Cleary). I haven't read Ondaatje in awhile, but he was an early literary influence for me in terms of prose style and the malleability of form, even for straightforward narratives. I loved the way he wrote The Collected Works of Billy the Kid as a collage. I think in my writing there's also a sense of scientific inquiry, motivated by wonder, and I get that from Diane Ackerman and Brian Doyle. Annie Dillard forever inspires me. I love the risks she takes, and I love that those risks always seemed to survive the editing process. The result is really seeing the unique quality of her mind, right there before me on the page.
KH: What are you working on now?
BJR: Short pieces! It's such a relief to be between books, even though I think no matter what I do I'm always somehow mulling over a book, cooking up a project for the future. But at the moment, I love being immersed in essay writing again. I have time to let my brief curiosities about the world turn into these brainy, bizarre little idea pieces that put quirky science and the domestic side by side. I have a new piece that just came out in Defunct and a recent piece on the Huffington Post 7 Rings Project as well. Totally different topics. It's so much fun to bounce from amusement to amusement after the sustained, serious effort of the memoir.