Susan Gubar’s Memoir of a Debulked Woman

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Although mutations in the BRCA1 and BRCA2 genes cause breast, ovarian, and many other cancers, I have tended to discuss mostly breast cancer here at the risky body. There are many reasons for this, including the fact that breast cancer poses the highest risk for BRCA+ women and that I am currently working towards lowering my own personal risk of breast cancer, so it is constantly on my mind.

Still, when I saw that feminist literary critic Susan Gubar’s latest book, Memoir of a Debulked Woman (2012), is on ovarian cancer, I wanted to read it so that I could better understand the disease, its culture, and the experiences of ovarian cancer patients. The fact that Gubar is a feminist academic pioneer writing on a topic relevant to me as a BRCA+ woman made the book even more appealing. Yet I have put off discussing it here, because I feel inadequate to the task of reviewing it. It’s a difficult topic to discuss, to say the least, and because there’s less of a discourse on ovarian cancer I feel like I don’t have the right lexicon for discussing it.

Memoir of a Debulked Woman is a detailed account of how a very intelligent, inquisitive mind grapples with being tethered to a diseased body with a terminal diagnosis. Gubar is a remarkable woman and this is a remarkable book.

Consider the way she describes her relationship with her husband, Don:

“Should Don or I die–how stupidly put!–when Don or I die, the physical departure would be, will be devastating. Yet surely that devastating physical separation cannot leave us or others bereft of our persistent relatedness to each other or of a profound and ongoing awareness of our persistent relatedness to each other. The location of that awareness remains nebulous in my mind, but not therefore less manifest. After the diagnosis and quite spontaneously, I found myself earnestly promising one and then the other of my distressed daughters, ‘I will love you beyond my death. I will love you from another place that you will palpably feel, and feel to be me loving you.’ Albeit confused, that declaration seemed to speak of the intense emotions sustained by the urgent desire to continue loving the beloved until and after death. I want to live as long as the people I love live. We will live so long as the people we love remember we love them” (27).

The memoir is filled with beautiful passages like this that evade the stereotypical rhetorics of hope and warfare that characterize so much cancer writing.

As a BRCA+ woman, I can relate to many things and situations that Gubar describes: stigma and shame, endless doctors, constant waiting, the barrage of tests, feeling the need to be your own advocate but feeling too stunned to do so, feminist suspicion of the medical industry, the sense of moving from the land of the healthy to the land of the sick. But there are many things that I cannot relate to: preparing for death, horrific surgeries that make prophylactic mastectomy look easy, terrible complications, etc.

Gubar details the barbaric procedures she undergoes and the painful side effects and complications that she endures in an effort to “[tell] the truth about the experiences of the female body” (31). She does not spare the humiliating details. Such candor is difficult to for writers to sustain and difficult for audiences to read, but it is incredibly important to tell the truth about women’s experiences with cancer. Although it’s a cliche to call cancer patients brave for living with their diseases, reading this memoir I can’t help but think that Gubar is incredibly brave to give such an honest, graphic account of what it’s really like to have ovarian cancer.

The book left me feeling angry, fearful, and despairing. Angry that women with ovarian cancer don’t have better treatments available that will enable them to maintain a high quality of life or potentially save their lives. Angry that¬† women don’t have better options for detection and prevention of ovarian cancer. Fearful that, as a BRCA+ woman, Gubar’s realities lay in wait in my own future. Despairing because it seems so unlikely that these problems will be solved in the near future or that Gubar will ever be cured of ovarian cancer.

Gubar was first diagnosed in November 2008. She completed this book in December 2010. I read in an interview that she was in remission, again, in summer 2012. I wish I knew how she was doing now. I have always thought highly of Susan Gubar’s work, and this memoir seems to me to an appropriate and important capstone to her career.

You can learn more about Gubar, her memoir, and ovarian cancer in a great segment from NPR here. Gubar is also writing a series of wonderful articles about living with cancer for the NYT here.

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Anti-feminism in Kevin Davies’s and Michael White’s Breakthrough

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One word: Meh. Then a few more: what the hell?

First, the “meh.” Kevin Davies’ and Michael White’s Breakthrough: The Race to Find the Breast Cancer Gene (1996) is a boring book, even for someone as thoroughly obsessed with BRCA1/2 as myself. Breakthrough was published in 1996, so it must have been rushed into publication pretty fast after the discovery of BRCA1 in 1994. In fact, it barely covers the discovery of BRCA2–by the book’s end, BRCA2 has been “localized” on chromosome 13, but not yet located (as it would eventually be in 1996). The book may have been stronger if the authors had taken some more time to write it.

Davies and White trace the competition among scientists to find the breast cancer gene in the early 1990s, but while the discovery itself is historically important, many of the players involved are not that interesting. What’s more, the authors largely adopt an “objective” journalistic tone and they frequently miss the chance to engage in some down and dirty cultural analysis or critique. For example, they discuss Mark Skolnick’s founding of Myriad Genetics, but largely let him off the hook for allowing the profit motive–AKA his greed–get in the way of affordable mass testing and research. Gene patenting was the hot button BRCA+ issue for over 15 years before the Supreme Court invalidated Myriad’s patents on our data in 2013. Davies and White barely touch the surface of this issue.

Much of the information that the authors present on breast cancer and BRCA1/2 is out of date by now. It’s been 17 years since it’s publication, so that’s to be expected. Still, the book is often painfully and self-consciously 90s with its frequent comparisons of BRCA1 to HIV, Hillary Clinton’s attempts to establish universal healthcare in the United States, and an overwhelming sense of optimism. All that’s missing is references to the “global village” and a rhapsody about the World Wide Web. The authors believe that the discovery of BRCA1 is going to revolutionize breast cancer prevention, detection, and treatment. In the end, I’m struck by how much hasn’t changed about breast cancer treatment in nearly two decades.

Now for the “what the hell?!” parts. The book ends with a rumination on the state of breast cancer culture in 1996. The authors opine that breast cancer has taken center stage and is receiving more funding than ever. And then, bizarrely, they start attacking feminism.

For instance, in one baffling passage they note: “Curiously, the preventive mastectomy option is significantly more common in the United States than in any other country in the world, but the reasons for this are unclear. It has been said that the preventive mastectomy response smacks of hysteria or is an expression of some convoluted radical feminism” (245). The passage begs the questions: who actually said these things that have “been said”? The passive voice of this quote (“it has been said”) makes it so that Davies and White can make this ridiculous argument without seeming to make any argument at all. I can only imagine that the convoluted logic here is that feminists supposedly reject femininity and therefore want to destroy the secondary sex characteristics that seem to define femininity. That, of course, is absolutely absurd, since feminists have long fought for women to have the freedom to make uncoerced decisions regarding their bodies and health.

And then things get more weird. The authors critique Gloria Steinem for not speaking out more about her own experiences with breast cancer, as though she’s obligated to discuss the details of her health with the entire country. And this bit of what-the-fuckery:

“According to conservative author Midge Decter, NOW is simply not interested in breast cancer, ‘Theirs is a leftist, radical agenda–not a woman’s agenda,’ she claims. ‘And what’s wrong with cancer as a cause from the point of view of the feminist movement is that they can’t identify anybody who did it to them. They’re therefore just not interested.’

Feminists have been used to taking control of their own destiny, of fighting and issue head-on. When it came to breast cancer, they were trapped by their own philosophy. Feminist lore during the 1970s made it clear that the way forward was for women to look after themselves and to control their own future, so any movement endeavoring to funds from the establishment to help cure women of a disease over which they have naturally had no control was anathema to the feminist ideal” (256-7).

WRONG, WRONG, WRONG. Davies and White need a lesson in breast cancer history: as I’ve said before, second wave feminism started the breast cancer movement via the women’s health movement of the 1970s, which was an explicitly feminist enterprise. This is well documented. Furthermore, feminism is not about individual women taking control of their individual destinies. It’s about achieving equality and opportunity for women as a class–that is, for all women, not just individuals. For this reason, feminists have a huge stake in breast cancer culture and research.

It’s also pretty funny to hear the National Organization for Women being called a “radical” organization, when it is frequently attacked for being too mainstream. It is, in fact, a “liberal feminist” organization and by definition not radical. But hey, what else can you expect when the authors consider an anti-feminist wingnut like Midge Decter to be citable expert. Decter, by the way, wrote a book called The New Chastity and Other Arguments Against Women’s Liberation (1972) and founded the reactionary Independent Women’s Forum. She about as much of an authority on feminist attitudes towards breast cancer as Anne Coulter or Fox News.

Adding to the annoyances of the book, Davies and White seem to have an anti-abortion agenda as well, and the issue of abortion pops up repeatedly throughout the book in odd places.¬† It turns out Frances Collins, another BRCA1/2 researcher and current director of the National Institutes of Health, is also anti-abortion. They all seem concerned that BRCA+ women will start aborting BRCA+ fetuses, because clearly women can’t be trusted to make sound ethical decisions about their bodies and their fetuses. This fear has not panned out over the last 17 years at all.

There are more problems with this book, but I’ll spare you the details. To summarize: Breakthrough sucks and is annoyingly anti-feminist. Learn from my mistakes and don’t read it. It’s a waste of time.

BRCA+ Epistemology and Masha Gessen’s Blood Matters

I picked up Masha Gessen’s Blood Matters after reading a glowing review of it in the NYT. It’s a nonfictional exploration of the cultural politics of genetics that begins with her mother’s death from breast cancer and her own deleterious BRCA1 test results. Along the way, she discusses subjects as varied as what makes a person decide to undergo genetic testing and the treatments available for people with extremely rare inherited mutations. She interviews scientists, doctors, family members, advocates, patients, and many others from Russia, the United States, Canada, and Israel. Wide-ranging, elegantly written, analytically astute: this is the BRCA+ book I’ve been hungry for. I devoured it in just a day. Go read it. Go read it now.

Much of the book involves Gessen’s search for answers to the thorny ethical, practical, and cultural questions that genetic mutations give rise to, so that she can make informed decisions about what to do with her new-found knowledge of her BRCA+ status. Like Joanna Rudnick, Gessen starts off not wanting the preventative surgeries that her doctors and seemingly everyone else recommends, but she ultimately ends up having prophylactic bilateral mastectomies with DIEP FLAP reconstruction. She has also documented her decision-making process in a series of articles for slate.com, pieces of which are included in this book.

Although most of the book in written in a journalistic mode with Gessen observing and recounting scenes in laboratories or clinics, some of the moments that I liked most were when she zooms in on her own personal experience. She talks about the loneliness of being BRCA+ and her envy for those with support communities to help them get through it, like a group of cousins who are all “in it together.” She discusses her hesitancy to dive into the online BRCA+ community, which she seems to find surreal. She mentions that she got tested for her mother’s mutation because she was confident that she’d test negative. She describes the inadequacy of gene therapy and overly chipper counselors who cock their heads in perpetual sympathy as they carefully phrase medical protocol. She becomes too anxious to do self-exams, because she fears her body’s capacity to develop cancers. She traces the mutation as far back through her family tree as she can by piecing together family lore. I had to resist the urge to write “me too!” repeatedly in the margins.

Most important, she briefly discusses the shift in identity and world view that a BRCA+ diagnosis brings:

“I belong to a generation that grew up believing we were shaped by love, care, or lack of it–or perhaps even the number of books on our parents’ bookshelves. But we will go to our graves believing that it is a combination of letters in our genetic code that determines how we get there, and when. Our concept of the stuff we are made of will have undergone fundamental changes” (14).

YES. THIS A THOUSAND TIMES. Testing BRCA+ changed my life utterly and irrevocably. One day, I was a normal healthy person. The next, I transformed into a pathologized being who grapples with obscure family histories, an army of doctors of varying skill and humanity, a capricious insurance industry, fear of cancer and surgery, social stigma, and the weight of irreversible medical decisions. But the changes wrought by knowledge of being BRCA+ go far deeper than that. The way I think of myself, my body, my family, my life, and existence in general has shifted dramatically.

After discovering my BRCA+ status, I went through not only an existential crisis, but also profound epistemological and ontological shifts. I had a narrative in my head about my life and my place in the world that must be rewritten to accommodate the fact that the threat of cancer has been lurking within me since the moment of conception. It seems as though I never stood a chance, like something out of a futuristic naturalist novel.

Since I got my test results and entered what Gessen calls “the cancer caste,” I’ve said the words “biology is destiny” and “I am not the universal subject” many times half-jokingly. I now see the world through BRCA+ lenses and I inhabit it within a deviantly BRCA+ body. I reject the genetic testing cliche that “knowledge is power,” because although I have always been BRCA+, my discovery that I am BRCA+ has been epistemologically ravaging and subjectively devastating. It has changed me in ways that I did not want to change.

However much cold comfort it may be, Gessen’s book suggests that BRCA+ women are the vanguard patients of the medical industry. We struggle with knowledge and choices that future generations may take for granted as so-called “personalized medicine” will likely require routine testing for genetic anomalies as part of basic care. Every human being has genetic mutations. If knowledge of mutations for hereditary diseases (or, as Gessen discusses, hereditary behaviors like alcoholism and aggression) becomes widespread, then everyone will become a mutant and being a carrier–of BCRA1/2, but also illnesses like Alzheimer’s, Parkinson’s, Lynch syndrome, etc.–will lose its stigma and hopefully its shattering effects.

The BRCA+ Bookshelf

There are two books that lay out what the mutations are, what the risks are, and what the options for risk reduction are: Confronting Hereditary Breast and Ovarian Cancer: Identify Your Risk, Understand Your Options, Change Your Destiny by Sue Friedman, Rebecca Sutphen, and Kathy Stielgo and Positive Results: Making the Best Decisions When You’re at High Risk for Breast or Ovarian Cancer by Joi Morris. If a BRCA+ woman decides to explore her surgical options, Kathy Stielgo’s The Breast Reconstruction Guidebook is priceless. These three books are required reading for BRCA+ women, and gene therapists should hand out copies of both these books to women who’ve just tested positive for a deleterious mutation (as opposed to the flimsy photocopied brochures featuring soft-focus women looking thoughtfully into the middle distance that I received with my results).

In addition to these informative medical books, there is a whole niche industry devoted to the BRCA+ memoir. I realize that many women find reading and writing these memoirs to be an emotionally satisfying experience. But I don’t. I’m not particularly interested in reading about individual women’s experiences of being BRCA+ in book form. There are many great BRCA+ blogs and youtube channels that detail individual experiences, and I’d rather read those. YMMV.

Instead, I’m looking for a big picture perspective on BRCA mutations. I want to know about the history of their discovery, about the scientists who found them, how they fit into the larger breast cancer medical industry and the history of breast cancer. I want to know what previous generations of women faced when they received a breast cancer diagnosis, how far we’ve come since then with medical advances, and how far we haven’t come since then. I want some hardcore cultural analysis of BRCA mutations, the risks women face, the environmental factors that contribute to growing rates of breast cancer, the surgeries available, and the pre- and post-surgery risky body. I want critical treatments of BRCA+ discourse and the BRCA+ community. And yes, I want to see feminist takedowns of the patriarchal medical industry as it relates specifically to high risk women. Whereas memoirs take an intimate look at the lives of women with mutations and their struggles, I want to contextual my own struggles within larger social, political, and economic spheres.

So far, my attempts to locate this sort of analysis haven’t fared well. Gayle Sulik’s Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health and Samantha King’s Pink Ribbons, Inc.: Breast Cancer and the Politics of Philanthropy take a good look at the many problems with pinkwashing and dominance of Komen in the breast cancer community. I recommend both of them. As far as history goes, Barron Lerner’s The Breast Cancer Wars: Hope, Fear, and the Pursuit of a Cure in Twentieth-Century America did a really good of laying out the heartbreaking realities that women with breast cancer have faced in the United States since the late nineteenth-century, but the chapter on BRCA mutations and gene testing was off-putting (that’s a whole other post).

Maren Klawiter’s The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism is next on my To Read list. Other suggestions are very welcome.