Illness Narratives

Illness Narratives: expressions around or about being ill, which can take many forms (art, film, dance, literature) and can be told from a variety of perspectives (health professionals, loved ones, those with illness). — Arthur Frank

See also: Language; Poetry; Photography


Writing About Breast Cancer: From Books to Blogs

It’s easy to forget that women’s writing about breast cancer is of relatively recent vintage. Until the 1970s, the disease was the province of medical men—and their textbooks.

The first women to portray the patient’s perspective were established writers and public figures with credentials persuasive enough to overcome their publishers’ reluctance. Rose Kushner (Breast Cancer: A Personal History and Investigative Report) was a Washington Post science writer; Betty Rollin (First, You Cry) an NBC correspondent; and Audre Lorde (The Cancer Journals, 1980) a well-known poet.

These writers transformed their personal stories into public platforms. Their narratives opened the door to a new breed. Now, we are witnessing another shift in the production of illness narratives, the result of changes in the nature of publishing and in the cultural standing of the disease.

— by Ellen Leopold. Read More

Early Narratives

The Cancer Journals

“I am a post-mastectomy woman who believes our feelings need voice in order to be recognized, respected, and of use.” — Audre Lorde, The Cancer Journals

Audre Lorde, African American poet, essayist, autobiographer, novelist, and nonfiction writer, was diagnosed with breast cancer in 1978. Six months after her modified radical mastectomy, she began writing journal entries about her experiences with breast cancer. She published an account in The Cancer Journals in 1980, which included excerpts from her journal.

Lorde’s writing called for cancer survivors to support one another and speak out about American culture’s push to render invisible the devastating impacts of breast cancer on women’s bodies, lives, and voices. In a similar vein as Rose Kushner’s work, which sought to question medical practice and break the silence that still surrounded the disease, Lorde raised issues that ignite social change. The Cancer Journals, republished in 1995 and 2006, still serves as a prophetic message.

In the first chapter, “The transformation of silence into language and action,” Lorde emphasized the importance of illness narratives. Putting what she feels into words enables a person to reflect on her experience, examine it, put it into a perspective, share it, and make use of it. Lorde argues that communicating our experiences not only benefits the speaker on personal level, but also gives voice to realities that will cause harm if left unattended.

“I was going to die, if not sooner then later, whether or not I had ever spoken myself. My silences had not protected me. Your silence will not protect you…while we wait in silence for that final luxury of fearlessness, the weight of that silence will choke us.”

For Lorde, it is the truthful telling of all kinds of stories that matters, not only those accepted in the broader culture. Her goal is not to construct a singular Truth but to create opportunities for women to seek out and examine a diversity of stories and consider their relevance to their lives.

A New Breed

Being Sarah

Thirty years after Audre Lorde first published her cancer journals, Sarah Horton published hers. Though they are unique in many ways, they share the message that we must give voice to realities that will cause harm if left unattended. Across the pages of Being Sarah, Sarah writes:

“We are hiding from the truth…We’re still smiling, us women…We cover it up…We don’t challenge. We accept breast cancer and its treatments. We deal with it, and we deal with it well…Have we blinkered ourselves with pink-tinted glasses here? I am not prepared to join in this collusion of silence.”

What can learn from these journals, written three decades apart? Breast cancer has shifted from a stigmatized disease that left women in isolation to one that silences them in a sea of pink.

Fewer women die from breast cancer overall now than in the past. Some treatments are more successful. But the culture is still afraid to speak the whole truth about breast cancer. As incidences rise among women (and men), diagnostic technologies fall short, treatments fail, side effects linger, breast cancers recur, the number of deaths each year remain far too stable, and no prevention or cure exists for invasive disease, the image of breast cancer remains undeniably, optimistically joyful. The cause itself has taken priority over truth telling.

This reality sounds quite depressing. But Being Sarah asks us to consider not what we stand to lose if our message, no matter how true it is… is so disheartening. It asks what we stand to gain?

The Cancer Culture Chronicles

The collected writings of Rachel Cheetham Moro in The Cancer Culture Chronicles is a compilation of her blog posts, fearlessly, ruthlessly and, at times, humorously looking at the world a terminal breast cancer patient endures.

Rachel was diagnosed with breast cancer at 33 years old in 2004. Her blog begins in 2009, the time of her metastatic recurrence and continues until shortly before her death from metastatic breast cancer in February 2012 at age 41.

Her early posts document her transition from a “good” cancer patient, concerned about other people’s experiences of her illness, to a righteously angry woman, dying of a disease whose lethality is too often downplayed. In a posted titled, “I’m talking about it whether you like it or not,” Rachel explains her perspective on speaking openly about breast cancer in a bulleted list that includes, “I have breast cancer, and dealing with the day to day practicalities of it means it’s often on my mind,” and, “Having breast cancer really pisses me off.”

Rachel’s voice gets stronger as her physical body weakens. She reports details of her declining health, sometimes with anguish, just as often with humor. After losing the use of her left hand due to cancer, treatment, or both, Rachel needed to get her vehicle legally equipped to accommodate one-handed driving. Finally meeting state requirements, Rachel gleefully wrote, “Now all I need to work on is being able to flip the bird with my spare gimp hand. A must-have skill for handling the extraordinarily polite New Jersey drivers.” The Cancer Culture Chronicles details the constant and debilitating treatments and the constant and debilitating culture surrounding the pink ribbon disease.

Eva Saulitis

Eva Saulitus, an author and field biologist, died of metastatic breast cancer on January 16th, 2016 at age fifty-two in Homer, Alaska. She wrote Into Great Silence after the first cancer was found in 2010 and four more books after that. According to her friend Christine Byl,

“Eva’s writing on cancer grew even more specific and intimate. First on her blog, Alaskan in Cancerland, and later in Caring Bridge website updates, Eva posted regularly, more so in the months directly preceding her death. Despite their presence on a blog, these pieces seemed less updates than early drafts of essays—thoughtful, nuanced, wide-ranging. In them, she resisted cancer-clichés like “heroic” or “brave,” puncturing any saintly self-image with a by-turns wacky and wicked sense of humor. She turned a platform commonly used for medical reports and health updates into a venue for writing unflinchingly about life with terminal cancer.”

An Excerpt: Wild Darkness by Eva Saulitus

For twenty-six Septembers I’ve hiked up streams littered with corpses of dying humpbacked salmon. It is nothing new, nothing surprising, not the stench, not the gore, not the thrashing of black humpies plowing past their dead brethren to spawn and die. It is familiar; still, it is terrible and wild. Winged and furred predators gather at the mouths of streams to pounce, pluck, tear, rip, and plunder the living, dying hordes. This September, it is just as terrible and wild as ever, but I gather in the scene with different eyes, the eyes of someone whose own demise is no longer an abstraction, the eyes of someone who has experienced the tears, rips, and plunder of cancer treatment. In spring, I learned my breast cancer had come back, had metastasized to the pleura of my right lung. Metastatic breast cancer is incurable. Through its prism I now see this world.

. . .

Facing death in a death-phobic culture is lonely. But in wild places like Prince William Sound or the woods and sloughs behind my house, it is different. The salmon dying in their stream tell me I am not alone. The evidence is everywhere: in the skull of an immature eagle I found in the woods; in the bones of a moose in the gully below my house; in the corpse of a wasp on the windowsill; in the fall of a birch leaf from its branch. These things tell me death is true, right, graceful; not tragic, not failure, not defeat. For this you were born, writes Stanley Kunitz. For this you were born, say the salmon. A tough, gritty fisherman friend I knew in my twenties called Prince William Sound “God’s country.” It still is, and I am in good company here.

We have no dominion over what the world will do to us, all of us. What the earth will make of our tinkering and abuse can be modeled by computers but is, in the end, beyond our reckoning, our science. Nature is not simply done to. Nature responds. Nature talks back. Nature is willful. We have no dominion over the wild darkness that surrounds us. It is everywhere, under our feet, in the air we breathe, but we know nothing of it. We know more about the universe and the mind of an octopus than we do about death’s true nature. Only that it is terrible and inescapable, and it is wild.

Death is nature. Nature is far from over. In the end, the gore at the creek comforts more than it appalls. In the end—I must believe it—just like a salmon, I will know how to die, and though I die, though I lose my life, nature wins. Nature endures. It is strange, and it is hard, but it’s comfort, and I’ll take it.

For twenty-six Septembers I’ve hiked up streams littered with corpses of dying humpbacked salmon. It is nothing new, nothing surprising, not the stench, not the gore, not the thrashing of black humpies plowing past their dead brethren to spawn and die. It is familiar; still, it is terrible and wild…. This September, it is just as terrible and wild as ever, but I gather in the scene with different eyes, the eyes of someone whose own demise is no longer an abstraction, the eyes of someone who has experienced the tears, rips, and plunder of cancer treatment. In spring, I learned my breast cancer had come back, had metastasized. Metastatic breast cancer is incurable. Through its prism I now see this world.

Orion magazine. Read More


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