Writing Private Illness Reminds Us That Silence Will Not Protect Us

It’s not just public catastrophe, like the HIV or COVID-19 pandemic, that drives us to write. A private catastrophe, one just in our own body, can do the same. In 1976, Susan Sontag sat dying or not dying, and she wrote. Sontag had cancer. She wrote about cancer in Illness as Metaphor. She wrote as she was herself ill. The big C. She wrote, “Today, in the popular imagination, cancer equals death.” She wrote, “As long as a disease is treated as an evil, invincible predator, not just a disease, most people with cancer will indeed be demoralized by learning what disease they have.”

Writing seems a reasonable reaction to the possibility of physical disintegration, to the threat of the annihilation of any version of herself not requiring a faith in the hereafter. Writing is forever. This is a human quality, one that becomes stronger as the end feels inevitable. Perhaps this is the writer’s reflexive response to trauma in the world around us or to trauma within our bodies. We don’t understand, and we are afraid, and we feel alone, and so we seek to explicate, if only to ourselves.

She did not write a journal. She did not write a diary. Publicly, she wrote an essay.

She never claimed her own cancer; she didn’t admit in this book that she was ill, facing her end. She could not write herself well. She could not write away her illness. She wrote away the place her illness gave her in society, a double illness in her mind. She could only cure the word cancer of its myths, which were as deadly as the disease itself. She wrote, “Fatal illness has always been viewed as a test of moral character.” She didn’t think she was being tested; she was just sick.

In 1979, Audre Lorde sat dying or not dying of cancer, and she wrote. She wrote for herself, private words. Her work announced itself as private in its very title, The Cancer Journals, when she shared those journals publicly. The stigma of disease, the pain of recovery, the fear, these forces can choke us into silence. She wrote, “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.”

Lorde wrote against and into her pain, against and into her death, against and into her body. Lorde saw other women around her fighting the same disease, but longed for another Black body, a feminist body, a lesbian body, to pull her along. And so she bared her body, her illness, the possibility of her death, publicly. In 1979, breast cancer looked like it did to Sontag in 1976 and to my own grandmother in 1973. Lorde was Black, which made any illness look different, which made and still makes breast cancer more deadly, not because of the biology of race but because of racism.

I know stories of my grandmother’s 1970s cancer from my mother watching her mother’s pain, from the matriarchal lineage of memory in my family. I know my grandmother’s almost death, even as her children were just beginning their adult lives. Major surgery, perhaps followed by chemo and/or radiation, or perhaps not.

Lorde was coerced into wearing a puff of lamb’s wool in her bra immediately following her surgery so that her missing breast wouldn’t be apparent to others. My grandmother had a silicone implant put in so that she would look like a “normal person” (her own words) in clothes. Lorde wrote, “I looked strange and uneven and peculiar to myself, but somehow, ever so much more myself, and therefore so much more acceptable, than I looked with that thing stuck inside my clothes. For even the most skilled prosthesis in the world could not undo that reality, or feel the way my breast had felt, and either I would love my body one-breasted now, or remain forever alien to myself.” When my grandmother’s implant burst inside her, the pain was worse than the surgery, worse than the cancer itself. Her daughters caught glimpses of her body rarely, in a mirror. I don’t know if her sons saw her body at all. I know this because her daughters, both, told me.

My fear of cancer, of the ultimate and forever annihilation, of the moment at which all feeling ceases, made me miss one fundamental truth of this particular disease. My research on cancer, how I turned it into a biological problem to be taken apart, to be solved, hid this from me. Or maybe I’m just such a man I couldn’t face the feelings staring me in my face. Cancer hurts. It just fucking hurts. Our bodies are not our own to control. After my grandmother died, I read Audre Lorde on her own cancer, her own almost death. She said what my grandma would not, what my grandma let pass in silence or only told to her daughters. Lorde sat dying or not dying from cancer and she wrote, “There were fixed pains, and moveable pains, deep pains and surface pains, strong pains and weak pains. There were stabs and throbs and burns, gripes and tickles and itches.” My grandmother told her daughters, “It is a pain of 10 out of 10 to lift my neck from the pillow. It is like having a 100 pound weight on me.” My grandmother asked me, “Why am I still alive?” 

Lorde’s private writing showed me things I didn’t know about my own family. This is the power of private writing, of publishing journals, even while we’re living: this level of intimacy and vulnerability models a new way of being in relation not just to writing, but to one another. Our relationship with the text can change how we want to treat, and be treated by, other people, including our family. Sontag explained her choice not to include private writing, or even the details of her own identity as a cancer patient, later in another essay, this time on the metaphors of HIV: “Twelve years ago, when I became a cancer patient, what particularly enraged me and distracted me from my own terror and despair at my doctors’ gloomy prognosis was seeing how much the very reputation of this illness added to the suffering of those who have it.”

“The metaphors and myths,” she writes, “I was convinced, kill.”

She didn’t talk about her own cancer in her book. “I didn’t think it would be useful,” she said, “to tell yet one more story in the first person of how someone learned that she or he had cancer, wept, struggled, was comforted, suffered, took courage… though mine was also that story. A narrative, it seemed to me, would be less useful than an idea.”

But Sontag’s ideas came from her body. For me, as a reader, feeling with Lorde, and seeing the ideas that came from that feeling, changed my mind and body. As a reader, the journal showed me more. Sontag claimed that telling her cancer story would be narrative, common, something we’ve already seen, a story we already know. But I see it differently. It’s not just narrative; it’s embodied feeling. And it’s worth it to feel and think at once.

In her book Funeral Diva, Pamela Sneed writes of attending funerals of Black gay poets lost to HIV in the early 1990s, almost too many to count. But it wasn’t just Black gay men dying of AIDS, it was women, too, like “Pat Parker / The pioneering Black lesbian poet who hailed from San Francisco / [who] like Audre Lorde had died prematurely from cancer.” Parker died in 1989. Audre Lorde died in 1992, at only 58, of breast cancer. Queer Black lives lost from HIV, queer Black lives lost from cancer. A body is a body is a body; White Supremacy produces Black death. How many lives and words were robbed from us not by cancer or by HIV but by homophobia, by racism?

Sontag and Lorde: I cannot read one of these two books without immediately reaching for the other. They are siblings in my mind, twins whose differences seem so stark because the under- lying circumstances are—by definition—so similar. Two women had cancer and wrote it down. One woman wrote an essay, never naming the fact of her cancer. The other wrote a journal, naming it over and over.

And yet, when it comes to signifying illness, I see the vast majority of white writers citing Sontag alone, not even knowing that she has a sibling-book telling an equally essential story.

Scholar José Estaban Muñoz considered Pedro Zamora’s decision to live his private (as queer, Cuban, and HIV positive) life publicly on early reality TV, writing, “subjects like himself never have access to full privacy.” Lorde, a self-described Black, feminist, lesbian, understood that publicly writing the full extent of her private illness was a radical breaking of the public/private binary, a binary that for her—as a queer Black person—had always been a lie. 

For queer people, as Muñoz writes, privacy is a recent and incomplete right. For Black people, the history of America is one without the possibility of a private life: what right does property have to privacy? Resistance to this dehumanization is a history of languages invented to remain whole as people and a white American public that either violently reacted to or appropriated these languages into the mainstream. 

Lorde is, in her book, speaking for herself and on her own terms, sharing her life and world in exactly the ways she wants. She might not have had me as a reader in her mind as she wrote, but I am so immensely grateful that she shared her private life with me in ways that Sontag didn’t seem able to.

Sontag’s book looks exclusively outward, at the world of literature, of ideas. “A narrative, it seemed to me, would be less useful than an idea.” Private writing requires, in my thinking, an ethic and aesthetic of looking inside, of laying the body or life of the writer bare, of looking closely at the self, and claiming that self on the page. If you write it down, it never needs to make its way into public writing; if you don’t write it down, it will never have the option to. The rest is a question of revision, of editing, of choosing what to share. The vastness of life requires editing. You can’t live along- side me; you—the reader—have your own life to live. So what moments from my life birthed ideas? If I want to share boredom with my reader, what bored moments of my life should I focus on and write through? What moments distilled a feeling that meant something to me, or that I learned from?

Our ideas come from somewhere. Lorde’s famous notion that our silences will not protect us, quoted so often and almost always without naming The Cancer Journals as its source? This idea comes from the experience of being a Black lesbian breast cancer patient.

My ideas come from reading Sontag, reading Lorde, and living, and I need to show all that if I want to tell something like the truth.

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