A quick biology review: Humans are born with 46 chromosomes, and two of those determine the sex: XX and it’s a girl, XY and it’s a boy. But about one in every 10,000 people is born with a mutation of the sex X, passed down through women to men (since men only have one X, healthy or otherwise, in the first place). The resulting genetic disorder, HED (hypohidrotic ectodermal dysplasia), isn’t usually life-threatening, but I can be life-altering:
Teeth are few and misshapen. The skin is smooth, firm, dry, nearly hairless. The hair on the head is sparse and often an eye-popping blond… writes Bonnie Rough, a Redmond native whose new memoir, Carrier, talks about the other side of the coin: being the one to carry—and potentially pass—the mutation to a child. In an age when DNA tests are common, in-vitro fertilization is an option, and abortion is legal, Rough unravels the moral dilemma she and her husband faced when trying to start a family.
What was your gut reaction when you found out you were a carrier?
I had a moment of feeling a little ashamed in front of my husband, even though he’s a sensitive man who would never blame me. His attitude was: Okay, what do we do about this? … It was different to learn that I was carrier when I was already in a marriage with someone who wanted to have children, as opposed to finding out when I were a single woman, not really sure what my reproductive future would hold. It wasn’t just my problem now; it was going to become someone else’s burden, too.
You’ve talked about being part of the first generation to have this choice to take a DNA test. What came with that responsibility? Did you feel pressure from your friends, family, society?
This book has a story in it that’s the journey of making a very hard decision, and learning how to turn off the noise that comes from outside and listen to that tiny voice somewhere on the inside. That took me years to do. On the outside, there’s church, politics, science, friends. For me a huge piece was family. There are people in this family who have this disorder. My mother is a carrier, so these choices would seem to reflect on them. It’s that challenge of walking the fine line. I love my brother, but I don’t want my children to face some of the things he faced. That to me was one of the hardest parts of being in this new generation, where we have these choices. You have to make them in public, at least in front of your family.
Can you talk about how your brother reacted to your decision-making process, and the book itself?
I talked to him yesterday—he was considering coming to one of my readings. I was trying to tell him, I don’t want you to feel trapped in a room where all of a sudden you feel like a specimen. And he had a response that reminded me so much of how he responded, so lightly, when I asked him for his blood [for a DNA test]. That day he said to me, Bonnie, I wouldn’t want your kids to have this. And yesterday, when I was talking to him about coming to the reading, he said, This stuff doesn’t bother me. I know I look good.
Find out more from Rough when she reads from Carrier tonight at University Bookstore at 7, and Sunday at 5:30pm at Third Place Books (Lake Forest Park).