Blogging Illness




IN THE FIRST PHOTOGRAPH a woman faces away from the camera. She is completely bald and wears a futuristic cap studded with electrodes and connected to a backpack by a tangle of cords. Below it is a selfie of the same woman posed with a male companion. His arm circles her shoulder, their heads touch, their faces are tired and glum. The caption below reads simply “Sad. I’m so sad.”

These photographs come from Every Little Thing, a blog by Alison Piepmeier, professor of women’s and gender studies at College of Charleston. For some years, Piepmeier has been using the blog to chronicle her experiences with an inoperable brain tumor, among other topics. Recently, she wrote, the tumor had begun to grow again, despite chemotherapy. The device she’s wearing in the pictures is a last-ditch alternative that may stop the tumor’s growth by beaming it with precisely targeted electric rays. She will wear it for the rest of her life.

Two days later, Alison Trope, another fortysomething feminist professor, writes about shaving her head in anticipation of baldness induced by treatment for stage IV breast cancer. This post belongs to HER-2, a blog Trope is co-authoring with Judy Muller, a broadcast journalist and colleague at USC’s Annenberg School. By coincidence, the two women were both diagnosed with breast cancer while co-teaching a class on news and media. They decided to write a blog to chronicle their experiences with illness and treatment. [1]

Reading these blogs as I teach The Cancer Journals — Audre Lorde’s passionate and innovative chronicle of her struggle with breast cancer — I’m struck by how much has changed since the late 1970s. Where Lorde decried the silence and shame surrounding her diagnosis, here are feminist professors writing about their experiences in a public forum. Where Lorde condemned the enforced cheer of survivorship, these writers admit to anger, depression, and sadness. And where Lorde felt pressure to conceal her asymmetry with a prosthetic breast, these women aren’t hiding the signs of life-threatening illnesses changing their bodies.

The work of Piepmeier, Trope, and Muller is indicative of broader cultural change, but it also actively promotes new ways of thinking, writing, and teaching about illness. Because they are professors whose careers revolve around research and writing, there is a erudition and writerly precision that distinguishes their projects — along with those of Susan Gubar and Nancy Miller — from countless other blogs about illness and disability. And because they are teachers, they also reflect on how the vulnerability of the professorial body can become an opportunity for learning and engagement.

Projects like Every Little Thing and HER-2 are the outgrowth of an explosion of life writing about illness and disability over the last three decades that includes Lucy Grealy’s Autobiography of a Face, Rachel Simon’s Riding the Bus with My Sister, Jean-Dominique Bauby’s The Diving Bell and the Butterfly, Lauren Slater’s Lying: A Metaphorical Memoir, Susanna Kaysen’s Girl, Interrupted, and Temple Grandin’s Thinking in Pictures. G. Thomas Couser describes the emergence of the “some body memoir” as “the most important development in American life writing in the last three decades or so and thus a cultural and historical phenomenon of great significance.” Where once memoir was reserved for celebrities and notable public figures, Couser observes, now ordinary people feel authorized to write their life stories, many of them focused on illness and disability.

This literary explosion has done much to lift the shroud of secrecy Lorde confronted, but with contradictory effects. The body memoir has certainly diversified the subjects of autobiography and lifted the stigma of illness. It has given personal voice to experiences that can be alienating and dehumanizing. And it has helped readers think about such profound questions as how to find dignity in the face of vulnerability, the costs of a society that equates health with virtue, and what really matters when one is faced with limited time and energy.

But the sheer quantity of writing about certain illnesses may also be oppressive, leading to predictable emotions and plot points. Searching the internet some 20 years after Lorde, Barbara Ehrenreich discovered:

thousands of the afflicted have posted their stories, beginning with the lump or bad mammogram, proceeding through the agony of the treatments, pausing to mention the sustaining forces of family, humor, and religion, and ending, in almost all cases, with an upbeat message for the terrified neophyte.

Like Lorde, Ehrenreich resents the forced cheer and the accompanying implication that women who feel angry, fearful, or depressed may be responsible for causing their illness and diminishing the efficacy of their treatment.

The formulas that now dictate so many illness narratives have been encouraged by the publishing industry. In the decades following the publication of The Cancer Journals, Lorde’s edgy, hybrid form would be replaced by smoother, more coherent views of illness, usually told from a retrospective standpoint that reinforced the themes of optimism, acceptance, and personal growth. Ehrenreich reminds us that the antidote to silence is not speech of any kind. Titles like Big C, little ta-ta: Kicking Breast Cancer’s Butt in 7 Humorous Stories, Let Me Get This Off My Chest: A Breast Cancer Survivor Over-Shares, Getting Things Off My Chest: A Survivor’s Guide to Staying Fearless and Fabulous in the Face of Breast Cancer, and Bald is Better with Earrings: A Survivor’s Guide to Getting Through Breast Cancer emphasize the importance of humor and spunk, as well as the redeeming wisdom of survivorship. Nothing wrong with those attitudes, but when an abundance of narratives crystallizes into a genre there may be little room to express other kinds of feelings or experiences.

More recently, a number of books have helped to aerate the monolithic view of illness emerging from the breast cancer memoir. Ehrenreich’s trenchant criticism became a chapter of her book, Bright-Sided: How Positive Thinking is Undermining America, which debunks the false promises of optimism. Gayle Sulik’s Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health examines the costs of the lucrative industry of breast cancer awareness. S. Lochlann Jain’s Malignant: How Cancer Becomes Us traces out the human consequences of a society in which the production of possible carcinogens is interconnected with the industries devoted to detection and cure. Memoirs like Susan Gubar’s Memoir of a Debulked Woman: Enduring Ovarian Cancer and Paul Kalanithi’s When Breath Becomes Air explore cancers with less hopeful prognoses, as do award-winning fictions like Margaret Edson’s play, Wit, and John Green’s best-selling novel, The Fault in Our Stars. Still, these are books and their form, as well as the requirements of the publishing industry, shapes the kinds of stories they tell. Their writing is subject to the polish of professional editors. They have a single author whose voice is unified and consistent. They must, of necessity, take a retrospective view, even if a posthumous one. And they encourage a linear form of reading that traces out a narrative from beginning to end.

Today, the internet and social media make it possible to bypass the publishing industry altogether. Twitter, Facebook, blogs, and websites are available to anyone who can access a computer. These media can be more formally diverse, since users can combine print with sound, images, and video. Because of their immediacy, they also invite a more casual, intimate, and confessional writing style. Where a published book presents itself as one, continuous product, social media can record silences, gaps where authors are unable to write because of pain or depression, as well as changes in style caused by suffering, anxiety, or fear. New forms of media create opportunities for collaboration among multiple authors, and, even more significantly, dialogue with readers. They also change the audience for illness narrative by expanding the pool of available readers and reaching communities that might not have access to published books.

This is not to say that the abundant writing about illness via new media is good, since most of it is tedious, banal, and clichéd (although it is worth noting that even in this, it is more representative of the narrow, redundant, and isolating experience of being ill). Authors like Jenny Diski, Miller, and Gubar stand out for their panache and originality. Having worked with the printed page for most of their careers, they approach blog posts like essays, writing with the same wit, verve, and polish of their more traditional publications (only Miller explores the visual opportunities of electronic media, illustrating her posts with photographs or her own artwork). Trope, Piepmeier, and Muller — all of whom study and teach, as well as working with new media — take greater advantage of its potential to bend the familiar conventions of illness writing. These writers aren’t just challenging the tone and subjects of illness narrative, but also its form.

Piepmeier has written about her brain tumor in The New York Times and Times of Charleston, but her blog is a more intimate and experimental space. In a post on her difficulties with writing and speaking, Piepmeier describes being unable to summon the word “calendar” to respond to a student asking for an extension. She writes, “I’ve had to read this blog for three times so that I’m can get it across.” For someone whose career and sense of self is defined by command of language, it takes courage to stand uncorrected. We must see these errors as deliberate (or at least as deliberately unedited). Throughout Every Little Thing, Piepmeier’s unconventional grammar and syntax express her vulnerability, inviting readers not simply to read about, but to join her in witnessing, the effects of her illness and treatment.

Trope and Muller’s HER-2 refigure the conventions of illness narrative in another way, by writing collaboratively. The space Susan Sontag called the “kingdom of the sick” is lonely. Miriam Engelberg gets it perfectly in her wry and funny graphic narrative, Cancer Made Me a Shallower Person, when she draws herself surrounded by a crowd of anonymous stick figures. A thought bubble over her head reads: “I have cancer. They don’t.” The internet and social media can offset isolation by creating virtual communities and organizing support networks. But they can also exacerbate feelings of alienation, as Trope discovers during a sleepless night, when Facebook only reminds her how far she is from the activities and concerns of healthy friends.

Writing in dialogue is Trope and Muller’s strategy for staving off the isolation of being ill. They pick a weekly theme and the author who writes second usually responds directly to the first. Their collaboration challenges the notion of survivorship that some who have been treated for cancer find objectionable. According to Jain, survivorship problematically equates overcoming cancer with personal virtue, strength, and tenacity, when in fact it has far more to do with the kind of cancer, access to health care, age, and socioeconomic class. And perhaps most important, luck.

Writing together, Trope and Muller confound the notion of survivorship. A few weeks into the project, Muller finished treatment, a milestone celebrated by her oncology team, as well as friends and colleagues. But her self-congratulation is checked by awareness that Trope, who is younger and has a more serious diagnosis, is just beginning her arduous treatment. Writing together, Trope and Muller underscore the many personal and structural variables that determine the outcome of a cancer diagnosis, and they resist the triumphal endings that often accompany individual stories.

Trope and Muller are aware that some will find their confessions unseemly. They could look to the case of Lisa Bonchek Adams, mother of three who wrote honestly and copiously of her struggle with metastasized breast cancer on Facebook, on her personal website, and on Twitter, garnering over 15,000 devoted followers before her death in 2015. She saw her project as therapeutic, but also used it to raise money for breast cancer research and treatment. Despite her popularity, Adams had detractors. In 2014, Emma Gilbey Keller published an essay in the Guardian questioning the ethics of oversharing. “Forget funeral selfies,” she asked, “What are the ethics of tweeting a terminal illness?” Soon after, her husband Bill Keller wrote an op-ed for The New York Times where he compared Adams’s public determination to fight — particularly her zest for aggressive, experimental treatments — unfavorably to his father-in-law, who died quietly under palliative care.

Questions about the ethics of writing publicly about one’s illness multiply when the author is a professor, and students are involved. Piepmeier, Trope, and Muller write about teaching while ill, and wrestling with the wages of illness and treatment on their bodies and minds. In this age of trigger warnings, some might ask about how students might be affected by reading about their professor’s cancer or inoperable brain tumor. But unless we believe these conditions should be kept secret, we might just as well ask: Why shouldn’t teachers make their own illness a subject in the classroom, as well as their public writing? In doing so, they’re participating in a tradition of pedagogy — informed by feminist, queer, and disability studies and including such varied figures as Jane Gallop, Eve Sedgwick, and Jay Prosser — that introduces, rather than denies, the materiality of the professor’s body and the curiosity, desire, identification, and repulsion it may inspire in students.

The new possibilities for illness writing come with drawbacks of their own. While the accessible, regular, and casual format of new media encourages a more immediate and personal kind of writing, it tends to concentrate on an individual’s feelings, thoughts, and experiences at the expense of structural factors that cause illness and affect its treatment. As Jain observes, the same companies that make chemo drugs are also creating carcinogenic pollutants; General Electric and DuPont pour toxic waste into the air and water even as they profit from manufacturing lifesaving mammography machines. A person in the midst of chemotherapy cannot be criticized for overlooking these connections. This is where the narrative distance of published authors like Lorde, Ehrenreich, Jain, and Jackie Stacey add valuable perspective.

But in addressing systemic injustice we should not lose sight of the value of individual narratives that speak to experiences of vulnerability, isolation, fear, anger, and suffering. New media gives them unprecedented opportunities to communicate those experiences in the form, as well as the content, of their stories. Those voices must be a crucial part of how we address illness and its treatment. If, as Jain claims, “cancer is our history. Cancer has become us,” these bloggers may be some of our generation’s most important cultural voices.

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Rachel Adams is a writer and professor of English at Columbia University. She is the author of numerous academic articles and book reviews, as well as three books.

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[1] Full disclosure: Alison Trope and Alison Piepmeier are dear friends, and the coincidence of their shared name (lately I think of them as “the two Alisons”) and similar projects inspired me to write this essay. I read their blogs loyally, and my investment in their writing is anything but disinterested. But I’m also firmly convinced that their projects are meaningful for reasons that exceed our friendship. I was writing and teaching about illness and disability narratives long before either friend was diagnosed. Because I’m aware of the possibilities and limitations of more traditional, published memoirs, I can see how these projects benefit from the genre-expanding possibilities opened by new media.


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