Chronicling the Messy Truth of Cancer
The process of illness that brings us near death is often a process of erasure. We lie between life and death, and most people avert their gaze from us. Most of us in this country also avoid dwelling too much on the dead themselves, though they are unfathomably legion and ever present. They are the water we drink, the land we walk on, the food we eat, the cells we are made of.
We are afraid and yet we are obsessed, scaring ourselves with zombie movies, but the real undead/unalive, those of us who hang in a certain balance, are largely ignored. We elicit pity, guilt, and discomfort. Our stories are told for us, on our behalf. The half-dead, the near-dead, the undead: Our presence can be frightening. But say, where there is fear there is power. There is power in what we fear; there is a power we wield when we are feared. It is a time in the world where these sayings, these stories, and these worldviews must be shared widely again.
I developed ovarian cancer in my late 30s. kills the vast majority of its victims; there are few survivors. This is largely because there is , and it is almost always . Its symptoms are so generic (bloating, fatigue) that any tired woman would not notice them, and most poor and working-class women would simply endure them.
In January 2021, while our world endured the isolation of COVID-19, I received a quick spiral of diagnoses that resulted in three cancer-related surgeries in less than three months. The winter of 2020 started with relief: Many of us had worked hard (and relatively well) together to defeat Trump. The previous four years of his presidency had brought me back to my organizing spirit and, while my peers and I were overworked and worn out, I felt some measure of calm when he was voted out.Ìý
Alongside the battles of 2020, a small spirit had been warmly pestering me, like a child asking to be born. She brought me messages, bodily communiqués that doctors call “symptoms.†These resulted in a diagnosis of ovarian cancer, and one that disproportionately impacts , , , and older women. It feeds on those who can’t go to a doctor and those who convince ourselves we do not need to.
It is a cancer that lives and grows far inside the body. In my case, it came to me after years of terribly painful periods, with days of cramps and heavy bleeding. Continuous travel for work meant I rarely went to a doctor; I told myself that I ate alright and exercised. I had visited a gynecologist a few times, but they had not figured out what was wrong and only suggested birth control pills, which I politely would refuse. In retrospect, practically bleeding out and through my jeans in an airplane bathroom—several times over the years—was not normal. But the machine of overwork often convinces us our pain is normal, setting our standards of suffering to autopilot, set to run until we just fall down one day.
I have had six reproductive organs removed: each one died and went into the earth before the rest of my body. This was a sacrifice I made at men’s altar of blood and steel and science. A sacrifice I made to keep living in this wondrous body, to keep enjoying her purpose and pleasures.
The (Goddesses and grandmother spirits of Central and Eastern Europe) and other spiritual forces in my life will, in time, tell me if this sacrifice was enough to save my life, but for now, it seems yes. I am told my diagnosis was quite unusual, that I was quite young for it. It has not served me to think of it this way. I refuse the idea it is unique—especially in the great cycle of loss and grief we all live in and through now. Instead, I felt it connecting me—as if on a threshold—to an array of spirits and humans. No saccharine optimism to be found, but such aliveness poured in and through me that I had moments of feeling dazzled.
When I was in treatment, I felt I was nearly being killed to save my life. At that time, I searched the internet for books written by ovarian cancer survivors. There were few. I discovered why when I went to online ovarian cancer support groups: Everyone was slowly or quickly dying in those groups except me. Most of those suffering from this cancer likely simply died before they could consider writing anything.
Then I searched for any books by women who had any kind of cancer; I found some. Many felt like sugary, optimistic fairy tales bathed in Pepto-Bismol pink. They were also overwhelmingly the stories of Christian, wealthy, white, straight women. There were also many films, books, and articles written by people who loved people with cancer and who had lost people to cancer: lovers, parents, and siblings. The lives of cancer victims and survivors impact those around us deeply, and others are often moved to speak for us. This has advantages and disadvantages, of course. We also must reserve the space and support to speak for ourselves.
This made the few books I found that were completely different all the more precious—most notably, by Audre Lorde, which stands alone. She remains the only woman writer who lived with cancer I have ever read who wrote with raw truth about what it meant for her body, her sexuality, her mind, her relationships, and her children to suffer like this. She was taken from us far too soon.
As I floated in my bed, during chemotherapy, high on opioids, I deeply wanted to read (when I could read) stories. Stories I could relate to: about the raw, the eternal, the visceral, the pessimistic, the women, the queers, the dead who talk to us when we are near their realm.
I didn’t want to hear the stories of praying to a God that was not mine. I was hungry to read about women grappling with cancer who were divorced, single moms, who came—as I did—from immigrant families, who had family far away, who were suffering through cancer on land that was not theirs and would never be. I did not feel the need to share every experience of these women; I just wanted to hear the pushed-out stories at the margins, which are really the stories of most of us. will deal with cancer at some point in their lives, and each year there are more cancer cases among .
It seems to me some of us must chronicle the messy truths of it so that more of us can care for each other better in a time of profound alienation and isolation. Few have written about what it is to suffer cancer surgeries and treatment during a pandemic. This experience only underscored and deepened the solitude intrinsic to all of us who come close to death, all of us who must build a new life.
When I was a child, I was told one story about the history of the plant hemlock: one of the highest honors told in the stories of the witch burnings, was when one witch would smuggle hemlock to her tortured and imprisoned sisters. The ultimate sign of respect: allowing each to choose how much pain she wanted to take before ending her own life. At the heart of Slavic belief—indigenous to Eastern Europe and part of my heritage—are the ideas of immanence: that all things are alive and sacred. The love and the wrath of the earth are poured out upon us. Our deaths, our near deaths, our salvation, and our new lives are all catalysts for transformation in which we have some choice, some power, even when we feel we do not. There is no end, no beginning, and there never was.
I made choices in my near death. I made choices in my new life. My reasons were my own and would be different from anyone else. I owe a great deal to the legacy of feminist literature, particularly chronicling—the idea that it is inherently political and liberatory to chronicle painstakingly, in natural and raw time, the experiences of those who are often erased and silenced. “When we speak,†Lorde says, “we are afraid our words will not be heard or welcomed, but when we are silent we are still afraid, so it is better to speak remembering we were never meant to survive.â€
I can only thank my ancestors here, and again and again eight times a year, for how they stayed close on this journey, ready for me if I were to cross over to their side. So many women in my lineage have suffered sorrow and regret silently; they urge me to speak. The honor of my life is to give voice in places they never could.
These words are for all of us who know in our bones or seek a different way of being alive, nearing death, suffering, and even dying. They are for all of us who love someone going through these cycles. They are for all of us who want to reach beyond the numbing gauze of our times to know what suffering means, to be fully alive again, in order to be whole, again and always.
This excerpt fromÌýÌýby Caitlin Breedlove (AK Press, 2024) appears by permission of the publisher.
Caitlin Breedlove
has been organizing, writing, and building movements in red states for the last 20 years, and working across lines of race, class, culture, gender, sexuality, and faith.ÌýAll InÌýis her first book.Ìý
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