Why Does Sickness Feel So Isolating When Everyone is Sick?

The things I didn’t want to think about again, but am now thinking about after reading Anne Boyer’s The Undying:

The boyfriend who told me I talked about death too much.

The doctor who told me about my reproductive chances before he told me about my own survival odds.

The stranger who, after I did not return his smile, spat, “You look worse today than you did yesterday,” who I followed across campus to tell him that of course I did, I had cancer.

The feel of a needle going into my neck and piercing something solid.

With this last memory, I scrape the bottom of my ability to describe pain. What does a fine needle aspiration biopsy feel like? It feels like a needle going into my neck and piercing something solid. It’s not a metaphor, but I know it sounds like one.

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I’ve wondered how people are physically able to write personal essays about their suffering. As Boyer observes, “a problem with art as it approaches suffering is that those who suffer are so often worn out from having suffered that any account of that suffering is exhausted before it is even tried.” How are they not too exhausted to write, too exhausted trying to heal their bodies that they cannot even reconstruct their narratives? Or do they stagger around like ancient mariners, ruining everyone else’s fun telling the traumas they cannot master?

Reading The Undying has helped me form an answer. Maybe writing about what happened to you is easier if you can stitch the atomized “I” back into the communal “we.” Boyer considers Susan Sontag’s prospective title for Illness as Metaphor early on in her text: “To write only of oneself is to write of death.” The liberal feminist interpretation of “the personal is political” assures itself that talking about the personal is a sufficient political act. Sharing stories to feel less alone is a worthy pursuit, but I’m skeptical about doing so in the name of a vague “raising awareness.” The key to Sontag’s observation is the “only:” turning away from other living beings is a turn away from being alive, yourself.

Instead, in the “history of illness,” Boyer finds the “history of the world,” and in “the history of having a body,” she finds “the history of what is done to most of us in the interest of the few.” If you write about cancer, in other words, you are never really writing “only” about yourself. You are writing about a global history of exploitation.

The strength of Boyer’s book is her critique of the ideologies surrounding sickness without resorting to the philosophical tendency wherein, as she puts it, “My body’ gets turned into ‘the body.’” She does not approach “the body” like it’s an abstraction, something to be thought about apart from our lived experience of the world that allows us to think or not think, depending on our level of pain. Her material analysis of cancer makes visible all the invisible labor that goes into cancer management, mostly by women, and often by women of color: administrative assistants that convert feelings into insurance codes, the nurses who are “mostly geniuses,” every person who asks your name and date of birth over and over.

If The Undying could be distilled to a sentiment, it would be this one: “I’ve just always hated it when anyone suffers alone.” The line reminded me of the title of another book about vulnerable bodies and vampiric big pharma, Claudia Rankine’s Don’t Let Me Be Lonely. Cancer is a lonely diagnosis, even if, as Boyer’s book makes clear, the diagnosis forces you to realize how open your body has been and will be to the outside world. Cancer is communal because the boundaries that keep the body in start to dissolve: blood, odor, spit, tears, hairs, vomit. Some of what comes out or off of you will be toxic to the touch. Boyer writes, “When your eyelashes fall out send them as a reverse wish to every person who has, at your illness, disappeared,” and I underline her words so hard my pen pierces the page.

Just as treating cancer can make you feel sicker than you felt before you knew you had cancer, the people who are meant to be your support system may require you to manage your feelings alone so they don’t have to. Boyer had friends who “seemed to cry harder at my diagnosis that I did,” knew men who expected her “to absorb their own excessive feeling on the occasion of [her] devastation. (I think of that boyfriend again, two weeks after my surgery, on the couch with his head in his hands in tears because he didn’t know if he was up for being with someone else. He’s married with a baby, now.) She describes a moment where she pleads with a reluctant friend to help her count her body’s wounds—“this is my body” and “I want to know what happened to it” and “I was drugged and no one explained what they did to me” and “I don’t even know how many holes I have”—and it occurs to me that if there is one thing anyone can do for someone who is suffering, it is to affirm that their body is theirs and to help them trace what happened to it.

A good memory: I sent my strangest, toughest friend a picture I found on the internet of what my neck looked like during surgery and she replied “I would make out with it.” It was a small gesture of the “aesthetic extremity” that Boyer and her friend Cara coin, which cancer sometimes necessitates. When you are so dissociated from your body, you must go to the rough outskirts of beauty to find it. You’re lucky if someone goes with you.

“People with breast cancer are supposed to be ourselves as we were before, but also better and stronger and at the same time heart-wrenchingly worse,” Boyer writes. In other words: your friends and family might evaluate your attitude, your resolve to get better, whether you entertain thoughts of death “too much,” or the enthusiasm with which you accept their green monster smoothies and their letterpressed cards that say “Fuck cancer!” They will see you as brave and strong because, for them, to see you as scared and vulnerable is unbearable. And then, some will back away. I wish I could say that it was more painful to lose friends who never said out loud that I had been too difficult than to have a needle in my neck, but it was not.

Particularly moving is her defense of Kathy Acker, who declined an aggressive form of chemo which, Boyer points out, would only have made her death more painful—but would have made her friends rest easier. “I lost a lot of friends,” Acker said, who “couldn’t bear to watch.” The shortcomings of “my body, my choice,” I suppose.

To take death seriously as an option, or worse, to choose a path that might hasten it—such as to refuse chemotherapy—is unthinkable, to some. As Boyer recalls, “‘Don’t try to make me,’ I warned my friends in a set of emailed instructions, ‘stop thinking about death.’”

For cancer sufferers, it becomes difficult to parse out where your body ends and begins and to what extent cancer is part of you, part of us. Acker’s essay, “The Gift of Disease,” details her decision to heal her body holistically after her mastectomy failed to eradicate all her cancer. She writes, “Since the healing work that I did, am doing, and that was done to me was mental and spiritual, as well as physical, I experienced my body either as having several aspects or as several connected bodies, as soul, as energetic or emotional, and as physical. I saw that the organs, the tissues and the cells physically remember all that happened to and within the body. I experienced the body as an entity separate from all other entities only in its physical aspect.”

The sad irony is that despite this heightened sense of interconnectivity that cancer might evoke, those who do not (yet) have cancer might not want to share in that connectivity. That’s one reason it hurts when people can’t handle your pain—society already refuses to extend a communal kind of care in favor of a capitalist bootstraps narrative of recovery. The communal is the only counter-approach to the neoliberal pink ribbon industry, where, Boyer points out, “the narrative is of the atomized individual done right, self-examined and mammogramed, of diseased cured with compliance, 5k runs, organic green smoothies, and positive thought.” (I’ve long felt it was perverse to to flaunt one’s able bodiedness in order to “raise” “awareness” about sickness.) I have never felt so in the world and yet so alone than when I had cancer. And I have never before been so keenly aware of the lack of social infrastructure (welfare, childcare, Medicare) that could keep us healthy.

Actual self-care, in the sense that Audre Lorde described, does not serve capitalism’s demand to Take Care of Yourself so that your body can work until death lets you retire. What would it feel like to be healthy, I wonder, if our health wasn’t tied to optimizing our potential to endlessly labor?

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Cancer is always communal because everyone could be a future sick person. Cancer is an experience of the body that upsets our understanding of chronology (when did I get sick?) and renders our experience of proximity completely uncanny (what is happening inside me?); Boyer defines pain thus: “the experience of a location that exists only as a desperation for its end.”

The communal cancer does not only impact humans. Boyer outlines the ecology of “carcinogenosphere” to argue for the ethical dilemma cancer treatment creates for cancer sufferers. Not only do the drugs she takes pass through her system and into the water largely undiluted, but to extract the drugs from the environment also threatens the environment. A cruel parallel: the drugs that treat cancer corrode the earth just as they corrode the body. The global cost of such drugs, as set by pharmaceutical companies, is “greater than the GDP of more than a hundred countries.” The individual cost of one chemotherapy infusion, Boyer remarks, was more than her yearly income.

Once you’ve been sick, and you begin to understand your sickness is inextricable from the world, it’s hard not to become a communist. How do you deal with an experience so isolating that even your own body feels elsewhere? Perhaps by realizing that everything is a relationship, even the mechanisms of our own bodies. Boyer writes that she wants her book to “manifest to communism of the unloveable,” which I imagine as a beholdenness to anyone who has once or will one day lose those relationships that seemed so solid—friends, family, body parts. “All that is solid melts into air, all that is holy is profaned, and man is at last compelled to face with sober senses, his real conditions of life, and his relations with his kind,” writes Marx in the sort of transposition Boyer, in her essay “No,” praises for its radical potential to imagine things otherwise. There is revolutionary potential in how we treat cancer, that is to say, how we treat each other.

I expect many critics will praise Boyer’s book—they should. I already envy the hyperboles of those who might call this book “gutting” without knowing what it feels like to have their guts cut out. After envy comes guilt, because here I am, feeling anything at all. The nerves in my fingertips are alive and I am not leaking more chemicals into the underground.

I wish I didn’t feel pangs of chagrin at the health of others, because even before I read Boyer’s theory of the communal cancer, I was convinced of it. She writes, “sometimes I would call myself a ‘sick person,’ and I would think of everyone else, if they weren’t sick, as ‘future sick persons.’” When I got sick, I wasn’t surprised, because it struck me as appropriate that anyone with a body would one day meet the inevitabilities of the body; Boyer’s frequent use of the second person makes clear that if you aren’t hailed yet, you will be soon. Even if a body lucks out and genetically and hormonally, your environment still affects your odds. (Five years after my diagnosis, an old friend from my hometown got one, too.) I didn’t want to be a 25-year-old with cancer, but, as I heard older friends with children tell my friends thinking about getting pregnant, “there’s never going to be a right time.”

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When I had cancer, I read a lot of Emily Dickinson, because she knew from pain. Boyer and her friends imagine creating a new pain scale of Dickinson titles, from “so utter” to “an element of blank.” Dickinson has a poem that begins, “I am alive—I guess,” which is what it feels like, sometimes, after great pain.

I am alive — I guess —
The Branches on my Hand
Are full of Morning Glory —
And at my finger’s end —

The Carmine — tingles warm —
And if I hold a Glass
Across my Mouth — it blurs it —
Physician’s — proof of Breath —

I am alive — because
I am not in a Room —
The Parlor — Commonly — it is —
So Visitors may come —

For a speaker in a Dickinson poem, whether or not one is living or dead is usually an epistemological question, not “what is death” but “how do you know if you’re alive?” As with Dickinson, cancer teaches us that we are alive so long as we are not dead.

How good — to be alive!
How infinite — to be
Alive — two-fold — The Birth I had —
And this — besides, in — Thee!

Having felt pain, I can hardly say that I am grateful to have felt it. But the knowledge it has afforded has proven useful. “What a relief, Boyer writes “not to collect tiny wounds as if they are the greatest injuries while all the rest of the world always, really, actually bleeds.” Cancer isn’t a great equalizer, but it does make the inequalities of this earth apparent. We can riot against each and every one of them, because we are alive.