Carrier: Untangling the Danger in My DNA

by Bonnie J. Rough

When Bonnie J. Rough receives the test results that confirm she is a carrier of the genetic condition "hypohidrotic ectodermal dysplasia," or H.E.D., it propels her on a journey deep into her family's past in the American West.

At first glance, H.E.D. seems only to be a superficial condition: a peculiar facial bone structure, sparse hair, few teeth, and an inability to sweat. But a closer look reveals the source of a lifetime of infections, breathing problems, and drug dependency for Bonnie's grandfather Earl, who suffered from the disorder. After a boyhood as a small-town oddity and an adulthood fraught with disaster, Earl died penniless and alone at the age of 49. Bonnie's mother was left with an inheritance that included not just the gene for H.E.D., but also the emotional pain that came from witnessing her father's misery.

As Bonnie and her husband consider becoming parents themselves, their biological legacy haunts every decision. The availability of genetic testing gives them new choices to make, choices more excruciating than any previous generation could have imagined. Ultimately, Carrier is a story of a modern moral crisis, one that reveals the eternal tension between past and future."

Genres: Memoir, Nonfiction, Genetics, Biography Memoir, Parenting

321 pages, Kindle Edition

First published January 1, 2010

About the author

BONNIE J. ROUGH is the author of Beyond Birds & Bees: Bringing Home a New Message to Our Kids About Sex, Love, and Equality, forthcoming from Seal Press/Hachette at back-to-school 2018. Her previous books include The Girls, Alone: Six Days in Estonia, selected by Amazon as one of the Best Kindle Singles of 2015, and the memoir Carrier: Untangling the Danger in My DNA (Counterpoint), winner of a 2011 Minnesota Book Award. A former journalist with an MFA in Nonfiction Writing from the University of Iowa, her work has appeared in numerous anthologies including The Best American Science and Nature Writing, The Best Creative Nonfiction, and Modern Love. Her essays have appeared in dozens of publications including The New York Times; Huffington Post; The Sun; Brain, Child; The Iowa Review; Florida Review; and Brevity. She also writes essay-reviews for the Seattle Review of Books. Rough's essays and talks on subjects ranging from science and sexuality to parenting and the writer’s life have reached audiences across the U.S. and abroad. Born and raised in the Pacific Northwest, she has lived in the Midwest and in the Netherlands and now resides in Seattle with her family. She teaches in the low-residency MFA program at Ashland University.

Reviews

[Luís Castilho · Rating 5 out of 5]

This is truly literary bliss. I cannot express in words how good this book is. It is about the Author's family history as told from the perspective of a DNA mutation that has ran in the family three for several generations. Among other things, this mutation prevents the ones who suffer from it from sweating, leading to various medical constrains. What is so interesting about this mutation is that women in the family are only carriers of the mutation, they do not suffer from it. They do, however, pass it along to their male offspring. This books starts off with the Author's search for a way to wipeout this mutation through either in vitro fertilisation or abortion. This leads her to question just how her ancestors actually dealt with this mutation, specially her grandfather Earl. From this point forward the book intertwines chapters where we follow her grandfather's struggle from his own perspective and chapters where we follow the Author's research and ordeal with her pregnancy. This makes for a very moving and interesting book about the power of family links. And let me add that the writing is superb. I am sure I will follow this Author's career very closely.

[Kristen · Rating 4 out of 5]

Lovely, wrenching and well-wrought book. Rough's tone is humane and generous as she renders her memoir/family history with a debilitating genetic disease. She scrutinizes the choices consequences of genetic testing and invites her readers to a place of understanding, despite moral differences. Definitely worth reading.

[E · Rating 4 out of 5]

She has a lovely way with words, very visual. She had a way of drawing me in, and the way she described Earl and his struggles was difficult to read for me (my dad became a severe alcoholic and had many of the same behaviours), and I did nearly put it down, but pushed forward, and am glad I did. The end of the book has some great thoughts on what it is like for a woman (a family) to live with a genetic disorder and the risk to the pregnancy and what may be going through their minds. It was helpful to give me that experience as i have discussions with women about this very thing through my work, and finding it written in an accessible, open and honest way may help others going through this sort of process as well.

[Chloe Thorpe · Rating 3 out of 5]

had to read for school. enjoyed hearing the author’s perspectives on the genetics side of things. takes a lot of bravery to write about your own thought process and your family with honesty so you gotta give it to her for that. i personally wasn’t a huge fan of the flashbacks and perspective shifts for a memoir, but i imagine it was a healing experience for her to write from her family members’ points of view

[Hanna Mouhsin · Rating 3 out of 5]

I really did enjoy this book and it was very insightful and inspiring it’s just unfortunately not my favorite writing style. I have a hard time with nonfiction in general and her writing as if it was her grandfather just wasn’t my favorite but I still would recommend the book to others :)

[Cheri Johnson · Rating 5 out of 5]

Powerful and incredibly moving--beautifully written, too.

[Cat · Rating 5 out of 5]

In her debut memoir, Carrier, Bonnie J. Rough weaves an intricate tale of family, mystery, and genetics through incredible storytelling capabilities and wonderful imagery. Carrier tells the story of Rough’s family history with a genetic condition, hypohidrotic ectodermal dysplasia (HED), and her own struggle with the idea of bringing a child affected with the disorder into the world. Rough tells the story through three different points of view: herself, her mother, and her grandfather—a man with HED.

Each point of view is remarkably executed, and there is no doubt that Rough put the legwork into researching her words. She captures the essence of her mother, Paula, and her grandfather, Earl, effortlessly and respectfully. Each section draws the reader into the minds of people we don’t know and could never understand otherwise, allowing us a glimpse into a life we would have never wanted. Rough understands the emotions behind her mother’s hesitant adoration for Earl, and displays Earl’s desire to be the best man for his family—even though his crippling drug addiction stumbles and obstructs him for most of his life. Rough allows the reader to feel anger at Earl and pity for Paula as she embodies their characters with such power and place that readers can feel they are reading memoirs of another time instead of just sections in a larger story. This is evident right from the start, as the first section simply labeled “paula,” begins:

You were only one when your grandfather died. I had nightmares about him all the time. He would fall on me, and I would be afraid his needles would jab me. Even though he was dead, it seemed like he could still wreck my life whenever he wanted to. I was a new mother, and I had this sense of power, but every time I saw his face, I felt afraid and furious and sad, just like when I was little…
Your dad and I have both been dreaming about him. Maybe he keeps coming back because all these years we’ve been telling the story wrong, and it rattles his bones. He wants you to tell his version now. You are part artist and part scientist. Maybe you were meant to show us what happened.
As Paula wished, Rough delivers on these words throughout the book. She offers the explanations and the research behind them, detailing the past with such fluidity that time is no longer a barrier for the reader to overcome.

As for Rough’s own timeline, there is nothing short of praise to be given for her incredible depictions of a woman struggling with the implications of her genetic history and modern technology’s ability to make passing on HED a complete choice. Rough is honest and endearing, to the point that a reader may find anger at a simple gesture from an ultrasound technician allowing Rough to hear the heartbeat of her unborn child (whom she does not yet know if she can carry to term). Rough accomplishes her memoir with dignity and astute grace as she traverses the emotionally charged topic of abortion and choice.

While there may be some qualms for readers with strong feelings against abortion, Rough does present her case clearly and leaves nothing unrevealed. Her emotions are laid bare throughout the memoir, allowing everyone into her thoughts and choices wholeheartedly. The book does not feel like a defense for abortion, but rather a woman’s story of dealing with her family history and the choice of having a child. Rough’s memoir succeeds in not only telling her story, but also in telling her family’s story through tremendous wit and heartbreaking realities—ideas sure to appeal to multiple family generations of readers.

[Laura · Rating 5 out of 5]

This book is for anyone who is pro-choice, a supporter of reproductive rights, or on the fence about these issues and how to deal with them. I think even pro-life supporters could take a peek at this, too! There is enough conflict in here for every reader to understand that this type of dilemma can be confusing and heartbreaking.

Rough brilliantly crafted three narratives – with hers as the main thread – in this braided-essay style memoir. The reader is introduced to the medical dilemma, hypohidrotic ectodermal dysplasia, that haunts the piece and the minds of each narrative. We meet the suffering Earl, Rough’s grandfather with HED; the passionately loving and paradoxically angsty Paula, Rough’s mother; and the worrisome, adoring, creative Bonnie (Rough). Earl’s narrative consists mostly of fiction pieced together by stories Rough’s family tells her – Rough was too young to know any of these stories when Earl died – while Paula’s conflicting, fluctuating feelings of anger and love towards her “embarrassing” father flesh out the stress family members faced in response to the disorder. Bonnie, a witness to the familial struggle, and a carrier of the gene, deals with the conflict of bringing another life into this world with her husband, Dan. There’s a 25% chance they will have a son with HED, and a 25% change they will have a carrier daughter. Armed with the latest medical technology and procedures, Dan and Bonnie try to come to a conclusion about their future pregnancies: should they terminate the pregnancy for the sake of the child’s future suffering and continuing to pass on the disorder for future generations, or should they continue with the pregnancy because they do not want to insult the history of their family and Bonnie’s brother Luke (who has HED)?

With Earl and Paula’s narratives, the reader takes a step back in time and observes the familial struggles with everyday life and unique situations – financial hardships, drug abuse, hospital crises. Bonnie’s narrative becomes more personal, a search for an understanding of the situation, the medical options, and her own self. Her sections slowly turn into obsessive worry, complicating the dilemma more.

I think this was very well-written! Rough crafted a tough, sensitive situation and explained her decisions thoroughly, tying all the loose ends and answering every argument. It was comforting to read this piece without having “pro-life!” or “pro-choice!” shoved down my throat. She provides her thoughts, facts, and detailed descriptions of every step of her journey to the decision.

[Carol · Rating 3 out of 5]

The author comes from a family afflicted by an X-linked hereditary disorder affecting only males but carried by females. This disorder, characterized by poor tooth development, lack of sweat glands, and a flattened nasal bridge, is annoying and somewhat disabling but does not necessarily shorten the life span. The author explores the lives of her relatives who have had the disorder, and gives a great deal of attention to her intelligent, inventive grandfather and his misfortunes which don't stem directly from the disorder but from his, what might one say? fecklessness? irresponsibility? leading to theft, drug addiction, asylums, jail. To what extent did the strain of his disorder result in this outcome? Would he have made a success of life had he not been affected? One never knows, surely some people so affected do very well in life, including the author's brother, whose life is barely touched upon. The author describes her two pregnancies and their outcomes and her worries and reactions very well. As she points out, the ideal solution, pre-implantation genetic diagnosis, would have cost $25,000, so she and her husband chose the less expensive option of pre-natal diagnosis with abortion. It is very brave of her to discuss her decision for abortion, for doubtless she'll get hate-mail. I thank her for her candor.

[Casey Lepley · Rating 4 out of 5]

Carrier does a wonderful job of filling in a space in genetic literature -- the patient's perspective. The author brings the reader on her unglamourized journey of family planning with the very real possibility of having an affected child. The guilt, grief, and anxiety described invade your own sense as you read. I am grateful for Rough publishing such a personal and impactful piece. I think it will serve as a reminder to other's that we cannot begin to fathom the impossible choices that face others and to not judge situations we ourselves never have nor will be in.

Memorable quotes:

"Genes manifested only in flesh and blood. People made them meaningful by judging them good or bad before ugly, strong, weak. I know my future children will be judged by others regardless of whether they had HED but felt compelled to block any harm I could."

"Did our quiet wish for a healthy baby mean we had entered the realm of hubris?"

"A pregnancy falls within the mother's domain, no one else's."

"But Amanda helped me stretch my idea of pregnancy to include another sense of the word: meaningfulness in waiting."

"I readied that for all my worries about sending a tormented should out into the universe, I had never allowed the possibility of a happy baby -- a world at peace."

[Kelli · Rating 4 out of 5]

This book resonated with me on so many levels that I often found myself with a huge lump in my throat on the verge of tears, and I am not a crier!

Two of my maternal uncles have a genetic disorder called Fragile X. Though not as medically devastating as HED, it still comes with it's own set of concerns and medical issues. My family has struggled with the idea of genetic testing for years and it has caused some frustrated conversations among my extended family. I have struggled, personally, much like Rough did, about whether or not genetic testing is for me. For me, it is not about the possibility of choosing not to have children, or even terminating a pregnancy; I simply want to have all my ducks in a row to be prepared for possibilities.

I admire Rough for sharing her story, especially about such an emotionally charged and personal topic. I applaud her for bravery. I'm not sure many people could be so open about sharing such a remarkable personal journey to motherhood.

[Sheri Fresonke Harper · Rating 4 out of 5]

Bonnie Rough's tale of being a carrier for a genetic disease that leaves a person unable to sweat, missing teeth, and other troubles, delves into the question of whether parent's should choose to have a baby with a disease. She covers the many options and worries at length, while bravely digging into her grandfather's unsavory past ending in addiction. She provides plenty of empathy for those with the disease and how they as person's create a relationship with her she wouldn't miss for anything.

Merged review:

Well told tale of a wife's exploration of her families medical history as it relates to a genetic defect and what steps she should take to embrace her differences while seeking to protect the life of her future children. The exploration and her later pregnancies lead to her into a richer life. Others with genetic problems may like to understand how genetics affects the lives of their children and what decisions can be made.

[Caroline · Rating 5 out of 5]

This is an extraordinary memoir, so beautifully written. Rough learns that she is a carrier for HED, a non-fatal but difficult genetic disorder that her grandfather suffered from and her brother also has. As she tells her story of trying to decide whether to have children, whether to undergo prenatal genetic testing, whether to carry a child with HED to term, she also tells her mother's and her grandfather's stories, in alternating 1st-person narratives. The memoir is a gorgeous love story, and also reads like a medical thriller -- I was staying up late and rising early to read it.

[Tina · Rating 4 out of 5]

I am very interested in genetics/genomics and how the technology impacts people, their health, their families, and ethical, legal and social implications. This book was very good in that Rough is very honest about her family history and how a single gene disorder that her grandfather and brother had affects her decision about having a baby. She does a nice job explaining how medical technology today gives her options and opportunities that her mother, grandmother and great-grandmother did not have.
Worth reading.

[Emily · Rating 3 out of 5]

An interesting look at hereditary disease and the choices we're given by medical advances. I'm not a big fan of memoir in general, and this one falls prey to some of the same problems (it's hard to through a bunch of events together and make them seem like narrative when they just AREN'T). There are also some weird chapters where she imagines events from her grandfather's point of view - those didn't work for me. An interesting and quick read, but, for me, too many creative liberties and not enough science.

[Jane Turner · Rating 5 out of 5]

Would you have an abortion if your child were going to have a lifetime of physical challenges? The question sends Bonnie Rough into the past to her granddad Earl’s life and early death from complications of a genetic condition called HED. Bonnie’s search is her expression of compassion for her grandfather’s suffering and for that of her brother Luke, who also has HED. When Bonnie must decide whether to keep her affected pregnancy, she writes: “Is there any way you could ever understand that I am drowning in love for you?” I don’t think anyone can read this book and be untouched.

[Crystal · Rating 3 out of 5]

This was our October book club book. This book was about a woman faced with knowing there was a genetic disease in her family, and exploring her options about adding to her family. This book has some very controversial themes that the author handled well. I found that for the first half, I couldn't put it down- but felt the 2nd half fell apart, which is why I ended up only giving it three stars. Oh well.

[Kristy · Rating 4 out of 5]

I enjoyed the historical view of the grandfather and how the condition impacted his life, tho the authors real life choices were what led me to pick up the book. The notion that we can stop a disease in it's tracks w careful planning and genetic counseling is important for our society to consider.
A simple read with a cut off ending, inho.

[Michelle · Rating 5 out of 5]

What I really liked about this book was how completely honest the writer was with herself and with the reader about how she would deal with an ethical dilemma created by new scientific testing. I also learned a lot about a disorder I previously knew nothing about, nor had I ever even heard of it. It was quite unique how she wove in stories in the voice of her grandfather and mother.

[Sarah · Rating 3 out of 5]

Fascinating ethical dilemma here, with some good narrative as well. Although it moves slowly and feels a bit repetitive in the middle, it picks up and pulls you back in at the end. The entire time though, you are privy to the authors every thought and emotion - a unique place to be and a hard place to write from, but she does it well.

[Shalaka · Rating 5 out of 5]

A wonderful, emotional true story written by a friend of mine, but that's not the only reason I give it five stars. Her writing is beautiful, her honesty is inspiring, she tells a story you can't forget.

[Kim · Rating 4 out of 5]

American memoir...present Minneapolis,Seattle...Genetic testing, choices, HED heritary disease. Engaging, well crafted, family history rooted in real life.

Esta - the grandmother in this book - is a friend of my grandma's at Merrill Gardens. Just met her on Saturday by coincidence.

[Jess · Rating 4 out of 5]

4.5 stars

Bonnie finds out she's a carrier for a genetic disease that's haunted her family. She must decide what she wants for her own future family while researching how HED affected her ancestors. Good writing and plot, but the real strengths are the pacing and characters.

[Dara · Rating 1 out of 5]

I was disappointed with this one. I was expecting more about genetics and less about mental illness and addiction. I guess sometimes they go together, but the back cover was deceptive. Luckily I was able to finish it at least!!

[Tina · Rating 5 out of 5]

This is an amazing book. It is powerful, well-written, and thought provoking. I highly recommend this book.

[Anika · Rating 4 out of 5]

Well-written, vivid language. Interesting history juxtaposed with the author's experience with a genetic disorder.

[Carly · Rating 4 out of 5]

Very good read, especially for genetic counselors, prospectively genetic counseling students, or families dealing with difficult genetic situations.

[Kristin Powers · Rating 5 out of 5]

An incredibly well written, brave story.

[Jennifer D. Munro · Rating 5 out of 5]

Thoughtful, insightful, and the bravest book I've read in a long while.

[Britta Miller · Rating 3 out of 5]

Well written and thought provoking