I’m the author of Tender Points, a book-length lyric essay about chronic pain, trauma, and rape culture. I host a reading series called Amy’s Kitchen Organics, and co-organize community events like 2016’s Sick Fest, a day of performances and talks by sick and disabled artists and writers. I’m the founding editor of Mondo Bummer Books and the author of You Don’t Have to Publish to Be a Publisher: An Autobiography of Mondo Bummer, an eohippus labs pamphlet. In 2014, I was the inaugural Writer in Residence at Alley Cat Bookstore & Gallery. I live in a rent-controlled apartment in San Francisco, where I’m working on my second book. More at amyberko.com.
I had 60 seconds to fight cancer, and I did poorly. I traveled swiftly through the bloodstream, propelled by up-tempo music and rapid side scrolling, but I couldn’t click enough leukemia cells to win. Did I want to play again?
Created by a pharmaceutical company, this educational online game is an effective way of spreading awareness about a rare form of leukemia. But awareness isn’t all it’s spreading. It’s also promoting the popular “battle against cancer” metaphor, a metaphor that many cancer patients and some medical professionals would just as soon like to forget.
Critics of the battle metaphor point out that it blames the patient for their illness: if cancer is a battle, then to die from cancer is to be a loser.
At a JCCSF Arts & Ideas talk in April, palliative care physician BJ Miller talked about the importance of shifting the way we think about illness. “As humans,” he observed, “we create enemies so that we have something to push against and punch and rally our energies. And medicine’s done that by calling death the enemy. That’s a benefit, but it comes at a huge, huge cost.”
Miller argued that the only responsible way to invoke the battle metaphor is “with a wink”—that is, with context and distance, identifying the metaphor as a construct and reminding the patient that the cancer cells are their own.
There are alternate narratives of living with, treating, and dying from cancer, ones that may better serve both patients and doctors. But these narratives have largely been eclipsed by the dominant model.
WHAT DOES THAT MEAN, ‘DOCTORS ARE COPS’?
In Illness as Metaphor, Susan Sontag criticizes cancer metaphors “drawn from the language of warfare” and warns against them, advising that “the most truthful way of regarding illness—and the healthiest way of being ill—is one most purified of, most resistant to, metaphoric thinking.” Sontag died from breast cancer at 71.
Critics of the battle metaphor point out that it blames the patient for their illness: If cancer is a battle, then to die from cancer is to be a loser.
I can’t even imagine writing that “Beth Murray lost her battle with breast cancer.”
I can write that Beth Murray died from breast cancer.
I can write, as the press release for her book does, that Beth Murray died on Wednesday, October 8, 2014 from metastatic breast cancer in her home in Midpines, California, under a full moon.
Cancer Angel, published in 2015 by Belladonna, is a singularly present and fearless account of living with, treating, and dying from breast cancer. In writing and in life, Murray rejected the received ideas of cancer as a villain and healing as a battle. But she didn’t follow Sontag’s instructions to resist metaphoric thinking either; instead, she conceived of her cancer in metaphors that better served her.
Her alternative cancer narrative is oriented around conversations, not battles. Murray listens, and her tumors speak:
I grow here to make bigger
the struggling part
when the voice is not big enough
grow in the throat to augment
when loved ones are troubledI grow as breast to nurture them
Rather than attacking, these tumors are talking: giving voice to suppressed feelings and offering support.
as humans... we create enemies so that we have something to push against and punch and rally our energies.
Murray’s doctor, on the other hand, “would never understand sitting tumor down for a talk / asking tumor what it wanted.”
Western medicine is slow to loosen its grip on Cartesian dualism, and this reluctance to recognize mind and body as one entity gets in the way of research on stress- and trauma-related etiology. Some studies have found a correlation between chronic stress and the incidence and growth of tumors, but not enough research has been done for organizations like the National Institute of Health to acknowledge a possible connection.
Whether or not a link between emotions and cancer can be documented, whether or not a link can be said to exist at all, Murray writes powerfully about the possibility in a poem about a visit with her brother.
Her “addict brother,” “gone now three years,” comes to sit with her. She cries and asks for help.
oldest sister thinks she has to carry
oldest sister carries for others
oldest sister carries what is hidden
tumors circle around what is not spoken
be like me and make trouble
but oldest sister swallows trouble
why tumors grow, too much swallowed trouble
Murray’s brother and his mischievous smirk inspire her as she makes her own path as a cancer patient. His incitement to disobedience becomes a mantra of individualism that buoys her through her healing:
make trouble for the one signing the red vile orders
make trouble for those who expect two perfect breasts
One of Cancer Angel’s greatest strengths is its sharp criticism of the conventions of Western medicine and the medical industrial complex. Murray speaks bluntly about the role of money in medical care:
WHEN LOVED ONES ARE TROUBLED I GROW AS BREAST TO NURTURE THEM
chemo is an industry in which
the burning in your blood
makes the nurses basic pay
makes doctors who sign the order
a new car with every treatment
She describes how her doctor dismissed her questions about chemotherapy without considering them,
said “you must”
wanted to hug me at the end of every visit,
big father medicine enveloping, “everything will be ok”
he stepped back when I said “don’t want a hug”
looked at me like it was my problem
when one day I said “no more chemo”
Last year I wrote a book that deals with the problem of gender bias in medicine and the trope of the female hysteric. My publisher made pins to promote the book and the pins say “doctors are cops.”
“What does that mean, ‘doctors are cops’?” people ask me at book fairs, at zine fests.
The line is taken from the book, from a short epigrammatic poem that draws a comparison between harmful abuse of power by law enforcement and harmful abuse of power by medical professionals.
Once, I heard a woman mutter just close enough for me to hear, “Well you can say that all you want, but you just wait until you really need a doctor.” I look young, I realized. I look healthy. I look like someone who’s never really needed a doctor.
The problem is that doctors are still cops, even when you really need a doctor. Especially when you really need a doctor.
I DECIDED TO PUT TOGETHER MYOWN PATH FOR HEALING.
Empty hugs and the “vile red liquid” of Adriamycin was all her doctor had to offer, and Murray wasn’t satisfied. Her veins protested, “don’t trust, don’t trust, don’t trust.” She believed there had to be another path.
when body says it has had enough vile
when body says
when body says
there will be a way
don’t wonder what the way, but wait to receive it
When Murray decided to discontinue chemo, she started a blog called Healing My Cancer. As a certified homeopath, she was already well versed in alternative medicine. With the help of doctors, healers, friends, gifts of satin pillowcases, dogs all around, White Tara, homeopathy, somatic practice, dreams, visions, meditation, and faith in uncertainty, she made her own way.
In her first post on Healing My Cancer, Murray concludes:
I decided to put together my own path for healing. I am not advocating that everyone do this; what I am advocating is that you look deep within and find the path that really resonates for you. When I was diagnosed and looking for answers, I didn’t hear about many people who were successfully treating their cancer with the methods that I have been using, and I’d like to spread the word that it’s possible.
I do not think that anyone but a patientis in a position to evaluate the quality of their treatment decisions.
In The Gentrification of the Mind, Sarah Schulman writes that Kathy Acker “died of bad treatment decisions regarding her breast cancer.”
Would it really have pained her to simply write that Acker “died of breast cancer”? In a book that’s mostly about AIDS and gentrification and only tangentially about Kathy Acker, why does Schulman take the time to make this judgment? Acker is dead. Chemo might have saved her, but so what? Acker had sound reasons for choosing an alternative treatment plan: chemo was prohibitively expensive for an artist with no health insurance (especially in a world before GoFundMe), and her doctors admitted that it would only marginally improve her chance of survival.
I do not think that anyone but a patient is in a position to evaluate the quality of their treatment decisions.
In “The Gift of Disease,” Acker observes that “the reduction of all that one is to materiality is a necessary part of the practice of conventional western medicine.”
She talks about her decision to walk away from Western medicine:
As I walked out of his office, I realized that if I remained in the hands of conventional medicine, I would soon be dead, rather than diseased, meat. For conventional medicine was reducing me, quickly, to a body that was only material, to a body without hope and so, without will, to a puppet who, separated by fear from her imagination and vision, would do whatever she was told.
I believe that Acker is a sister of Murray. They share a keen understanding of the need for individuality and spirituality in medical care, something Western medicine often fails to consider.
I keep asking myself: what would Beth Murray’s cancer video game look like.
Toward the end of Cancer Angel, Murray writes, “I sit with others facing death instead of chemo.”
One problem with the choice to turn away from chemo is that it’s a refusal of the acceptable form of cancer patient: the survivor.
In her essay “The Sororal Death,” Anne Boyer writes:
Most often only one class of people who have had breast cancer are regularly admitted to the pinkwashed landscape of awareness: those who have survived it. And to the victors go the narrative spoils. To tell the story of one’s own breast cancer is to tell a story of becoming a “survivor” via neoliberal self-management—the narrative is of the atomized individual done right, early-detected and mammogramed, of disease cured with compliance, 5Ks, organic green smoothies, and positive thought.
For this reason, Cancer Angel is crucial. The opposite of a pink ribbon breast cancer memoir, it’s a breast cancer story that rejects obedience, that rejects neoliberalism, that rejects Western medicine, that ultimately rejects survival—but never loses, rejects losing, wins (rejects winning) by playing by its own rules, on its own terms.
I SIT WITH OTHERS FACING DEATHINSTEAD OF CHEMO.
I keep asking myself: what would Beth Murray’s cancer video game look like?
It wouldn’t be about clicking cancer cells to destroy them. What action, then?
Maybe none: a cancer video game where the cancer is just there; you witness it and accept it. Talk to gods, talk to doctors, talk to friends, feel fear, practice healing, walk the dogs. Cancer floats by on the screen and clicking it does nothing.