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 forty-nine. 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.
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Praise for "Carrier"
"What is so amazing about Rough's struggle with her DNA destiny is not just the impossibly tough choices she faces in planning her own future, but the raw courage she exhibits in dealing with the choices made by the generations before her. A carrier of the rare genetic condition hypohidrotic ectoderm dysphasia, which condemns sufferers to a lifetime of debilitating infections, chronic respiratory ailments, and recurring skin rashes, Rough reports that her grandfather and brother were scarred by the disease, leaving their wives, mothers, and daughters helpless and angry . . . This is a story that will resonate for anyone who grew up in a family with a relative suffering from a chronic illness or addiction." --"Publishers Weekly" (starred review)
"Rough a fine writer with a talent for portraying subtle family dynamics. When she writes as herself, she is often quite moving-particularly when she deals with the possibility of passing HED to her unborn child and her pain as she receives the fateful genetic-test results. An . . . engaging memoir that provides a much-needed window into how serious genetic conditions affect families." --"Kirkus Reviews"
"Rough's first-person account of carrying the gene for hypohidrotic ectodermal dysplasia includes monologues by her grandfather Earl, who died when she was a baby. His illness from the genetic disorder--characterized by sparse hair, cone-shaped teeth, inability to sweat, and distinctive facial features, including a deformed nose--is carried invisibly by mothers and passed to sons . . . Readers will be moved by her emotional pain, but equally affecting is Earl's . . . his is the haunting voice of the past that overshadows the present in this compelling read." --"Booklist"
"Bonnie Rough's search is a myth for our time, and her book a necessary read for anyone who faces the implacable destinies of inheritance." --Honor Moore, author of "The Bishop's Daughter"
"Bonnie Rougho
"What is so amazing about Rough's struggle with her DNA destiny is not just the impossibly tough choices she faces in planning her own future, but the raw courage she exhibits in dealing with the choices made by the generations before her. A carrier of the rare genetic condition hypohidrotic ectoderm dysphasia, which condemns sufferers to a lifetime of debilitating infections, chronic respiratory ailments, and recurring skin rashes, Rough reports that her grandfather and brother were scarred by the disease, leaving their wives, mothers, and daughters helpless and angry . . . This is a story that will resonate for anyone who grew up in a family with a relative suffering from a chronic illness or addiction." --"Publishers Weekly" (starred review)
"Rough a fine writer with a talent for portraying subtle family dynamics. When she writes as herself, she is often quite moving-particularly when she deals with the possibility of passing HED to her unborn child and her pain as she receives the fateful genetic-test results. An . . . engaging memoir that provides a much-needed window into how serious genetic conditions affect families." --"Kirkus Reviews"
"Rough's first-person account of carrying the gene for hypohidrotic ectodermal dysplasia includes monologues by her grandfather Earl, who died when she was a baby. His illness from the genetic disorder--characterized by sparse hair, cone-shaped teeth, inability to sweat, and distinctive facial features, including a deformed nose--is carried invisibly by mothers and passed to sons . . . Readers will be moved by her emotional pain, but equally affecting is Earl's . . . his is the haunting voice of the past that overshadows the present in this compelling read." --"Booklist"
"Bonnie Rough's search is a myth for our time, and her book a necessary read for anyone who faces the implacable destinies of inheritance." --Honor Moore, author of "The Bishop's Daughter"
"Bonnie Rougho
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Customer Reviews
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Most Helpful Customer Reviews on Amazon.com (beta)
Amazon.com:
4.4 out of 5 stars
14 reviews
12 of 12 people found the following review helpful
5.0 out of 5 stars
Riveting!
6 May 2010
By T. Hesselgesser
- Published on Amazon.com
Format:Paperback
Bonnie Rough's book was not the type I usually read. But once I started it, I was sucked in by the vivid descriptive detail she uses to portray emotions, feelings, events. To be able to portray people's feelings and emotions in such a brilliant way is true genius. Written primarily from her perspective in her struggle to face choices and decisions she must make as a carrier of a genetic disorder, she explores her family history in an effort to learn more about the disease and it's devastating effects on earlier generations. Although we follow her in her wrestle with difficult choices, we also watch as she unfolds the pain caused by her grandfather's struggle with HED, written both from his and his daughter's (Rough's mother's) point of views.
Because her writing brought everything to life, I was enthralled the entire time I was reading, and when I wasn't, I was thinking about what would happen next and what her ultimate decisions would be. I definitely cried or had a lump in my throat at more than one point. In the end, she was able to make the book not just about HED or pro choice v. pro life or any judgment about moral dilemmas; she wrote about family love, sadness, hurdles, and her own personal struggles with her own personal decisions.
Ms. Rough reached true potential in crafting this masterpiece. You surely won't regret reading it.
Because her writing brought everything to life, I was enthralled the entire time I was reading, and when I wasn't, I was thinking about what would happen next and what her ultimate decisions would be. I definitely cried or had a lump in my throat at more than one point. In the end, she was able to make the book not just about HED or pro choice v. pro life or any judgment about moral dilemmas; she wrote about family love, sadness, hurdles, and her own personal struggles with her own personal decisions.
Ms. Rough reached true potential in crafting this masterpiece. You surely won't regret reading it.
7 of 7 people found the following review helpful
5.0 out of 5 stars
Quite the Page-turner!
25 May 2010
By A. Bhargava
- Published on Amazon.com
Format:Paperback
I recently purchased Bonnie Rough's memoir, and I absolutely loved it! I found her to be a thoughtful, introspective, and painstakingly honest writer. I have my Ph.D. in Counseling Psychology and as a college professor and psychologist, I would highly recommend this book without reservation to my students and clients as well as family and friends. This book will not only relate to those struggling with issues related to entering parenthood but those struggling with moral dilemmas, the hardships of moving to a strange, new city or those facing the challenges of tracing one's family heritage. I am sure that writing this heartfelt memoir was a truly cathartic experience for Rough, and as one of her readers, I felt honored to share a part of her journey with her.
7 of 7 people found the following review helpful
5.0 out of 5 stars
Only part way done, but loving this book!
26 April 2010
By C. Vaughn
- Published on Amazon.com
Format:Paperback|Amazon Verified Purchase
I haven't even finished this book yet, but I've already recommended it to everyone I know because I know I've discovered a precious gem of a read. So far I am captivated by the story lines that weave the author's desire to start her own family with the touching realities of her brother and grandfather who suffer from the same disease she could potentially pass onto her future children. I promise to return and write a more complete review when I'm finished, but I wanted to pass on the word to all out there considering this book. Don't think twice on this one -- READ IT!!
*************
UPDATE - Now that I've finished Carrier, here's the remainder of my review:
First of all, Rough's interview with NPR certainly addressed the end of the book, but it did very little to explore the journey Rough went on to ultimately make her extremely difficult decisions about parenthood. This wasn't the fault of the author, who was very well-spoken and poised, but more due to the short-sighted questions asked by the interviewer who overlooked 90% of the book. I urge you not to judge the book solely on the interview...the reviews here are a much better source.
Overall, Carrier is a book that every reader might not agree with, but that every reader will be touched to the heart by. No matter what your opinions, you must respect the author's heartfelt and sincere journey of self- and family-discovery that make you realize that such an issue can never be considered black and white. The intricately woven story, both beautiful and tragic, gripped me from beginning to end. I haven't read a book in so few sittings in years. I stick to my original recommendation above: read this one.
*************
UPDATE - Now that I've finished Carrier, here's the remainder of my review:
First of all, Rough's interview with NPR certainly addressed the end of the book, but it did very little to explore the journey Rough went on to ultimately make her extremely difficult decisions about parenthood. This wasn't the fault of the author, who was very well-spoken and poised, but more due to the short-sighted questions asked by the interviewer who overlooked 90% of the book. I urge you not to judge the book solely on the interview...the reviews here are a much better source.
Overall, Carrier is a book that every reader might not agree with, but that every reader will be touched to the heart by. No matter what your opinions, you must respect the author's heartfelt and sincere journey of self- and family-discovery that make you realize that such an issue can never be considered black and white. The intricately woven story, both beautiful and tragic, gripped me from beginning to end. I haven't read a book in so few sittings in years. I stick to my original recommendation above: read this one.
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4.4 out of 5 stars
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