Ouch, she said. It’s the bones, of course. It’s not being able to move normally. It’s aching from deep inside the marrow. It’s a tremendous pain that begins as soon as I sit down, lay down, am still. It creeps through my ankles and hips and ribs and femurs and spine. And so I walk. I pace. I go to yoga and kickboxing and the gym. I ride my bike. I bounce on my toes at my standing desk while I type.
I’ve never had chronic pain before this. Sure, my back hurts sometimes from sitting in front of my computer writing, and my ankles are weak and perpetually sprained and swollen from my totally clumsy way of navigating the world, but it’s never chronic pain like this. I mean this is actually, pain. Like a really terrible headache, but in my body. Sometimes I can feel the toxicity-based-pain in my skull and in my fingers- no bone is spared, but mostly, it moves quickly between my hips and femurs and ankles. I am the highest dose of the medicine that’s supposed to fix this, but alas, it hurts like a b*tch. Luckily, it won’t last forever. As soon as the ugliest poisons are diluted enough each cycle, the bone pain will fade, leaving in its place neuropathy, which means that my hands and feet are basically numb from absorbing so much toxicity. Probably, the bone pain will fade tomorrow. Then I have one more cycle left.
Today, I went to an academic lecture and discussion at UBC. I went to a different one last week, and at the beginning of that one, the speaker said something to the effect of, “I want to invite you to do whatever you need to do with your body to be comfortable, whether that means walking around, stretching, laying on the floor, sitting on a chair, etc., in order to bring awareness to the ways that academe shapes and disciplines our bodies and excludes particular ways of being in the world through that shaping/disciplining.” I thought that was so cool, and today, I would have taken her up on the offer. After ten minutes of listening to today’s lecture, I couldn’t sit in my chair any more. The bone pain was traveling between my hips and my femurs, and I had to get up. I stood in the back, pacing and bouncing and marching in place. I’m sure people were like what-the-eff? I worried I’d distract the speaker, but she never looked up from her paper.
And so then we moved spaces, and the group became markedly smaller, and we had a “discussion.” I warned the person convening the discussion I’d need to move about beforehand and she was entirely fine with my doing laps around the meeting table, but I’m sure the other participants were like WTF?
I can’t fold my body that way. I can’t fit into academe’s stringent body-shaping. I can’t sit in a chair for more than ten minutes, especially if its lecture/professional-style, with my feet on the floor and my hands in my lap, and the only variation is crossing my legs.
Today’s experience trying to mold my body into normative shapes and be comfortable about it felt glaring. It was just another time, and now, a time where it was very obvious to others, that I no longer belong in the realm of the healthy normal, a time where I had to broach normativity and where I embodied otherness in a way I never did before cancer. You see, I am and have a body I can normally make fit, a body that can normally access privilege without a second thought. I am a white body, a cis-gendered girl body, a body that is whacked and policed and monitored through gendered body image, but nevertheless a body that fits in airplane seats easily and that can fit into the sizes available at stores where I shop.
Because of my body, I’ve gotten a lot of “things,” if you will- I’ve gotten on airplane and flown across multiple states without any identification post-9/11, and I assure you, this ability to convince folks I was just a girl with a lost purse and a real need to get home was directly related to my race and gender and relative young-ness. At that point, I was probably twenty, maybe twenty-one, and I smiled cute and shrugged my shoulders and forced my eyes to fill with tears when they tried to block me- and suffice to say, I got from Houston to LAX without a hitch and even ordered some alcohol on the way.
Similarly, most of my before-cancer experience in hospitals took place in Latin America, where I was a white female body negotiating for care for other white, mostly cis-gendered female bodies. I knocked that shit out of the park- I got the best doctors and I cut all the lines and had all the tests expedited. I refused to wait, and so I got what I wanted- be it a helicopter to air-vac a teenager from Nicaragua to Miami now, or be it skipping ahead of the waiting-room full of patients, or be it having the doctor close her office to drive with me two hours to someone with an allergic reaction. You don’t need to tell me how insanely colonial and racialized this is: effectively, I used the power afforded to me by my white skin, my emergency credit card, and my ability to demand I get what I want to make sure my people were treated before everyone else. I took full advantage of all sorts of privilege and justified it by saying that the people I was caring for needed it, and that I was insanely busy and couldn’t wait in the waiting room. We could do a whole analysis of development work and youth programming vis a vis health care, and the sorts of colonizing relationships justified in the face of something like health, or safety. But such is not today’s topic.
Today’s topic is that today, the multiple ways in which cancer has othered me, in many ways for the first time ever, became blatantly apparent in the lecture, when I became so other, so unable to meet the simple and normative standard of sitting in a chair and listening. It’s not just this moment, there are many moments in which cancer makes me the other.
bell hooks, writing about her experience in graduate school, writes “nonconformity on our part was viewed with suspicion, as empty gestures of defiance aimed at masking inferiority” (hooks, 1994, p.5). Refusing to conform by sitting did indeed warrant scowls and stares, raised eyebrows that seemed to suggest, “And why can’t you simply, sit? And why can’t you discipline your body, as we are, here, together in this room?” Of course, they would have certainly looked the other way and nodded knowingly, probably with pity, if they knew I had cancer. But they did not know, and they seemed to ask, why must you refuse this basic norm, when we are already here in a space that feels threatened, discussing critical race theory, when we are here already trying to undo legacies of colonialism, racism, misogyny? Of course, they didn’t actually ask, and I am writing of how I interpret their gazes on my body, their turned heads and the feeling emanating from their body to mine.
I wonder, did they remember what the last speaker asked, about making space for bodies out of chairs? Did they watch me bouncing on the balls of my feet in the back of the room and think, like I did, of the last speaker who gestured to refusing that our bodies be disciplined by chairs? Did it occur to anyone, that we were together discussing global justice, talking about capitalism and its ill-will, and that, perhaps the reason I was pacing was because the front-end of capitalism- cancerous invasion of our bodies- was playing itself out inside of my breast?
No, I am sure they did not think that. But that is not the point. The point is, cancer has forced me to experience otherness in a way I never did before. Even in the cancer-world, I inspire horror. Regularly, when I meet older women with breast cancer- which is like, every day- they gasp about my age. Their hands fly to cover their mouths as they murmur, “but you’re so young.” In the regular world, horror, too. I inspire skin-crawling fear. I embody that which no one wants to be. Nobody wants to imagine it could be them, and I’m too close. That girl, that almost-Ph.D. with cancer. It’s easy to imagine it only hits the old people, the sick people, the people who drink too much coke and eat too much fast food. Having me in your midst disrupts that false sense of security, pops the bubble of the other— the other is your peer, your graduate student, the girl sitting next to you. Even at the breast cancer exercise study, I’m decidedly othered as impossible in relation both to the many older women present, and most significantly in I’m othered as impossible in relation to the graduate students working on the breast cancer project: for they are different than the women with breast cancer. Except then there’s the grad students with breast cancer. Sorry dudes, I’m here. We’re here.
There are of course safe spaces. There are safe spaces too, of course. There are knowing nods from other women with cancer. There is the fact that everyone in my academic circle is insanely supportive. There are big hugs and knowing hugs from my academic mentor who had cancer, and who is of course in charge of this space.
But still, there are the raised eyebrows. Surely, they would turn right into kind eyes if they knew, but I think the point here is that we can’t always know. Besides, its entirely unfair to only be accommodating when you know, and puts the burden of educating and informing and telling directly on my shoulders to expect me to justify not being able to fold into an appropriately disciplined chair so that others can be comfortable, can be knowledgeable, can make kind eyes instead of eyebrows-raised-eyes.
And so I have to wonder: what might a pedagogy look like, where there are no expectations? Would it be a pedagogy of encounter? Situating the self in relation to other in such a way that denies and rejects expectations is such work: like anti-racist pedagogy, it takes consistent encounters with the uncomfortable, consistent ability to reside in a space of unknowing, consistent willingness to f*ck up. How might we encounter the political in the space of cancer, in the face of the constant seduction of normalcy, of body policing, of urge to hide cancer, of positivity? What does a political pedagogy of cancer look like, and how do we engage such a pedagogy as communities of people where not everyone has cancer?
I wonder what would happen if we took the chairs out of the lecture? What if we sat on pillows instead? What if we started each lecture with some way for participants to share their experiences of the day, like -oh no, here we go- with an energizer or short check-in? What if we put on different ways of sensing the world, and thought theory through those glasses that are not our own? How do we think about what is radical and political, in a space already so policed that we almost need normativity in order to gain credibility? What does it mean to be a young scholar who cannot fit oneself into normativity and cannot thus gain credibility that way?
There is much yet to think about in terms of how cancer others.
There is much yet to think about in relation to how we might engage a political and embodied pedagogy of cancer.
There is much yet to think about in a world where we so clearly wish to ignore, expel and banish cancerous bodies.