So, A Film.

So Callanish produced a film, about their retreats (one of which was so healing for me) and about six young women who have metastatic/recurrent cancer. Tonight, the film was screened. I went.

The film was beautiful. Shot in golden light. Edited carefully, with profiles of the young women portrayed with sunlight dancing on their cheeks and warm blurred moments and yellow daisies swaying in the wind and rose petals floating in a creek. The images were scrumptious, warm, and bathed in golden light. In many ways, these images reflected my own experience of the Callanish retreat: gorgeous, careful, golden, warm, full of heart.

The women told stories of times their doctors gave them weeks to live, they shared their decisions to get married and travel to India and do insane bike rides in the face of terminal diagnoses. They shared spirit, hope, and fears. They echoed the voices of other young adults I’ve known, and I felt many of their stories and worries and hopes deep inside my core. The film profiled a few of those professionals from Callanish who so beautifully receive spirits and bodies battered by cancer and who, through absolutely tender and amazing caregiving, heal the wounds the oncologists cannot see and awaken the souls of people who have been to hell and back. That part was so well-captured, and I could feel their care leaping out through the screen and enveloping us all. I know their care works, because it worked for me.

You know there’s a but coming though, don’t you? It’s a hesitant but. I don’t want to say anything critical about this wondrous place. I don’t want anyone to hear me utter a single word of not good-enough about these amazing people. But.

I could feel it in my chest, a tightening. I sat in a row of young adult cancer survivors, young people who have fast become close friends. We spent the afternoon together with lunch and lattes. We were stoic. Sometimes a tear escaped. Sometimes we held each others hands. Sometimes we nodded. Mostly we were stoic.

I could feel it in my belly, a stone sinking. This pain was real, but bathed in golden light. I yearned for sharp shadows and the harsh light of midday, for the hard angles of the sun that paint faces in black and white- angles and light that feel like cancer. I expected to see not only the loosening of the cancer knot wrapped around each person profiled- the loosening work so carefully done by Callanish- but also, how the knot was tied, how it was bound, how it left marks that yoga cannot soothe away. I know Callanish retreats are out-of-time, that they are out-of-the-rest-of-life, and I think that’s awesome and necessary. I wondered what it would look like to show the anger, to edit in the frustration, to account for the ongoing struggles around pain, medication, and loss. I know that the Callanish retreats are a sacred space that can expand to hold pain, ongoing struggle, and loss. Maybe Callanish retreats can hold so much pain because they are simply soaking in beauty.

But cancer isn’t all beautiful. It isn’t all retreat. And I think to really illuminate WHY that place must be, it needs to be grounded in what young adult cancer actually looks and feels like: grounded in veins that are totally shot from so many IVs, grounded in the humiliation of hair loss, grounded in feeling like the only one, grounded in a system built for older bodies, grounded in anger and pain and loathing and loneliness. Maybe some people know that, and maybe it doesn’t need to be explained and maybe it’s comforting and amazing for the audience to see the sacred space of healing. But I don’t know that people do know that. I actually think most people don’t know what cancer is like, and so they don’t get why the Callanish retreat space is so critical.

After the film, the six women talked about their experience. First, they introduced themselves and were asked to say a bit about how they are doing, now.

Every single woman smiled and said they were doing fantastically. Everyone used the word fantastic. Everyone. Each time, the feeling in my chest got tighter. My stomach flipped. Fantastic. Fantastic. I’m doing fantastic. I feel fantastic. Fantastic, fantastic, fantastic.

Come on.

But then I wondered what the other option was, sitting in front of a giant audience of people, everyone’s eyes on you. Is there discursive space to say anything after fantastic, after someone else has said fantastic? No one wants to be a killjoy. Fantastic. She’s fantastic. They’re fantastic.

It felt so out of synch with the sacred space for when things are not fantastic.

But really, what else can be said? How do you say, this sucks, to a group so large? How do you fail to respond to the question lobbed at cancer survivor after cancer survivor: “What did you learn?” How can you possibly speak anything but positive, happy cancer?

Do we even have the narrative building blocks to say anything but this story with a hopeful narrative arc, this story that resolves with defying the odds, this story that isn’t angry but is grateful, this story that isn’t crippling but is wings soaring? Isn’t it true, that we draw on the worlds we know to tell stories? Aren’t we just like children playing with building blocks, making castles out of squares and rectangles? What if the children need a lopsided octagon? What if their life feels more like a chartreuse squiggly oval, but they have to settle for a green rectangle instead, because the building blocks only come in rectangles and squares and primary colours?

Such are the building blocks of cancer storytelling. Those brilliant young women who shared their stories in the film got the standard set of building blocks, the same ones we all have: primary colours, shapes that fall easily into brick-like formations: squares, rectangles, and maybe a few long flat things. Maybe an octagon or a diamond. But those are the weirdest ones. Forget it if you want a chartreuse squiggly oval. Just forget it.

They were working with those discursive building blocks. But the restlessness in my legs and the ache in my chest and the knot in my belly, those feelings were chartreuse, squiggly, and oval. Anger has no place in these building blocks. There are not feminist building blocks. There are not queer building blocks. There are not sad building blocks. These are building blocks meant for public consumption. Building blocks palatable to the general public. These building blocks are language itself.

Sure, there can be anger at Callanish, because they’ve tried so beautifully to rid the space of discursive building blocks. You don’t have to talk. You don’t have to say anything. And sometimes cancer takes all the words and shoves them off the side of the cliff, so there’s nothing to say anyway.

But I was dying for someone to be honest. I texted my friend Catherine, hopeful her memoir will soon be ready for me to read, a memoir that she herself told me was too angry, too sad, and too queer for most people to like it. I am dying for her honesty. I am dying for her anger, written across the page. I am dying for her account of breast cancer.

I know these women know. I know the Callanish people know. We’ve talked about it. But what is the choice? How does one tell an impossible story, to a theatre full of waiting faces, a theatre filled with pairs of eyes staring down, expectant for something brilliant to be said? And also- aren’t we responsible to tear apart the happy narrative, don’t we have to change the world?

And then it happened.

Someone said cancer was a blessing.

Cue, my disengagement. I just can’t. “Cancer is a blessing” is probably one of the most popular blocks in the cancer-storytelling block set. It’s like a blue square. Hundreds of them. They are everywhere you turn. When you first get diagnosed, people dump “cancer is a gift” storytelling blocks on you like they are going out of style. If you’re me, you chuck them out the window. But then again, I’ve always like being a little oppositional. My mother says its the red hair. Whatever. But truly. A blessing? Why do we cloak it this way? To make others feel like it’s OK we got cancer so young? To placate? To brush away worry?

We needn’t placate. We need to incite. It isn’t OK. We need a revolution. Stat.

And then it happened again.Someone asked these young women what they could teach “us?”

OK, first of all. Us? Why us? And who is “us?” I knew right away I was not a part of the us. I wondered if this question-asker knew. Us- a discursive move that let everyone know that “us” were everyone else, not the aberration, the healthy people. The five of us, sitting in a row and digging our fingernails into each others’ palms- we were outside the us.

Second of all, really? Teach? People who have cancer are prophetic? Really, that was the question?

No one asked what they lost. No one asked what hurt the most. No one asked about a revolution. No one asked about channelling anger. How could they? There are very few building blocks available to ask these kinds of question. There are even fewer to answer with. And everyone knows it. I don’t think its conscious. I think it’s cultural. Political. How we do cancer. It was a pedagogical evening. Full of teachable moments.

I want to unteach though. I’m over pedagogical. I am angry. I am interested in telling a different story, though I know it’s extraordinarily difficult and in telling another story, we mostly fail out of green squiggly chartreuse ovals, and lean on blue squares. Like, with the song. We’ve tried to tell a story of the everyday, a story of the cancer-ed body, a story of anger and healing braided together. Were we successful in refusing the happy pink ribbon narrative? Sometimes I think so, sometimes not. But I’m proud of our effort. I’m proud of our insistence that we have to tell something else. I know that we told a little squiggly chartreuse oval, even we fell back on blue squares sometimes. Each attempt is imperfect, but necessary.

I think the film (which will soon be available on their website and you all should watch it!) was beautiful, but it was hard. It was not what I expected. My stomach was in knots. And you all know where I go when it gets hard- cultural theory! Feminist critique! Because theory always makes everything better. I feel kind of bad, because The Art Therapist Who Presides Over Acrylics and Feathers and Glitter asked me what I thought, and I didn’t want to burst into tears in the middle of the theatre so I started spouting off about discursive space instead, and how storytelling about cancer is im/possible, and how it’s different when people edit together their own stories- and she reminded me that one of the young women worked with the filmmaker. I didn’t mean to say it wasn’t beautiful or important or totally necessary or critical and real. Those are peoples’ stories and they should be held carefully and tenderly and hopefully. And that is all. Except we also have to be engaged and critical and our theories are inside our bodies, too. How could they not be? Embrained bodies. Embodied brains. It’s both.

So theory makes everything better. Or at least, it makes me feel a little less embodied sometimes, and more embrained, so I can get through the hard moments. Theory makes everything better. But then again, so does The Song. The song is, of course, theoretical. It’s deeply engaged with cultural theory and feminist criticism. It has to be- that’s why I love it so much. It lives in my body. But I need to see the anger painted in broad strokes, I need to know I’m not the only one who is sad, I need to hold up what still hurts and I need it to be witnessed. That is exactly what I have gotten at Callanish, but for some reason, the film as a media event also felt disjointed. Maybe that’s just who I am: maybe I should try to be less critical. Maybe I should just appreciate. Maybe I should be more like those young women, women who have worse cancer than me, if we’re comparing. Maybe I should say I’m fantastic more often. Maybe I should throw more rose petals in the creek. Maybe I should do more yoga (well, that is definitely true, isn’t it?). Maybe I should, maybe I should, maybe I should….

But fuck. I need a damn oval squiggly chartreuse building block. I guess I have to make my own. With the song. My friend Catherine is writing a book I’m pretty sure will fit in with my oval squiggly chartreuse building block, and a book I think will make another attempt at angry, queer, sad, feminist cancer, another attempt to keep my song company. Maybe we’ll fail. Definitely sometimes, we will fail. But maybe sometimes we’ll end up with something approximating an oval squiggly chartreuse building block.

Now why do I feel the need to end this post by saying how grateful I am for the film, by writing how beautiful and brave those young women are, by acknowledging that we all have our own processes and that each one is powerful and important and should be held carefully and loved. What is it, that makes me feel like I need to end on that note? A pull to the other kind of story? I’m ending it here. Time to go listen to my song.

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Knowing

Rationality. It exists in the mind, not the body, the white man scholar who lives in the ivory tower declared. The female body in particular is made of flesh that can steal rationality or tilt the balance upon which rationality rests. Women are constantly written off for being emotional, irrational, because of our bodies. Rather than be in our bodies, we need to get outside of them, survive them, be awesome in spite of them- be emotionless and rational and neutral in spite of the female body (read: endeavor to be like a man, and call it neutral, even though it’s not, its thinking/being/doing like a man).   Patriarchy has built a particular looking glass, and in this looking glass, being enmeshed with the body is a function of being woman, or being other than man. Elizabeth Grosz, one of my favorite feminists, writes of this patriarchal looking glass, “Women are somehow more biological, more corporeal, and more natural than men” (Grosz p.14). Challenges of the body- embodiment, the body and knowledge, knowing from the body, knowing without the body, knowing through the body, knowledge traveling through the body- figure large in feminist arguments about the construction of knowledge that dismantle the way that rationality has been heralded as an out-of-body, emotion-less, male quality.

As a scholar, I try to stay in my body. I try to acknowledge the way my embodied privilege informs my writing. And as a breast cancer patient, I notice all kinds of tensions happening in between my body and my mind. I’ve disengaged from my breast. In preparing to have it removed, I’ve stopped relating to it entirely. Sometimes, I am frustrated I care so deeply about a breast, and I roll my eyes at myself, rationalizing the decision and feeding my mind statistics and information. I shouldn’t care. I know gender is socially constructed. I’m a feminist, I know I am more than my breasts. I tell myself to be rationale: this breast actually tried to kill me, of course it should be kicked to the curb. Just the other day, I admitted to an ardent feminist who had breast cancer, that I wish I didn’t care, I shouldn’t care, a feminist should know she didn’t need to care. I shouldn’t care.

But I do. And in the tension between stats, information, and surgeries I recognize that my own disregard for feeling and for my embodied experience of my breast and breast cancer is reflective of so many of the rationality/embodiment/gender conversations feminists have been having for decades. There is very little space, in the medical world, to account for the embodied experience I am having.  I am constantly showered with opinions, stats, rationale decision-making, suggestions, ideas, recommendations. I am tired of rationality and I am tired of being told rationality is neutral. I am tired of being given stats and listening to numeric explanations. I want to shake some of these people, and ask them to stop trying to rationalize my body away. My body is here.

I am a body. A body marked female at a birth. A body that is supposed to have a pair of breasts. A body that has cancer growing inside one of those breasts. I am also a scholar, a partner, a friend, a kitten-foster, a writer, a dissertation candidate with an external identified for my defense, a lover of artichokes, a crafter, a world traveler, an organizer. But here in cancerland, my body is constantly assaulted with rational claims, claims that, even though they are about my body, deny my embodiment. The onslaught of claims are launched at me, the cancer patient, and the claimants mostly refuse to acknowledge me, everything else. So much is denied, and in the end, even my body as a cancer patient is denied, and I’m supposed to acquiesce to someone else’s mathematical calculation of what I need. Seriously.

Just this morning, I stood on a treadmill at the cancer-gym and prepared to start my cardio. A grad student came over (I’m part of a study and there are all these grad students/volunteers who run the exercise programs) and asked me if I wanted to try intervals. Actually what I wanted to do was read the book on my kindle, but what was I to say? So she stood there, and she narrated this whole story about knowing exactly what rate and incline I needed to get to a particular heart rate from my previous exercise test. She went on and on. And then she wrote this information down on a yellow sticky, smiled, and left me to do her perfectly calculated intervals. Stupid calculations. I didn’t get my heart-rate up to my target, even though I followed their calculations exactly. And worse? Then I didn’t get the work-out I wanted, so I was pissed off.

Who cares? Me. I care. I care that I cannot fit myself into a calculation.

As this grad-student-person’s words came at me, staccato and punchy and happy-happy, I willed myself not to roll my eyes. She has no idea. A calculation can’t account for the horrible cold I had during the test she is calculating from, or for my late-night Easter escapades, or for the fact that I only got on the treadmill at all because my cancerfriend was on the one next to it. A calculation can’t account for my body. It seems absurd as I write this, that someone would actually believe they could tell me how hard I should work to achieve a physical goal, from outside my body, doesn’t it? I mean how could she possibly have that information? Obviously, she didn’t. The calculations were wrong. I knew they would be from the second she stuck that stupid yellow post-it with the stupid smiley face on my treadmill. And that is how it always is. People telling me all kinds of shit about my body, that they apparently know because they are some kind of expert.

Any feminist can tell you that expert knowledge is situated, embodied knowledge. And that the person most situated, most embodied, most full of expertise about a body is the person living in that body. And yet- here I am, day in and day out, being denied expertise about my own body. People telling me, every single step of the way, that they know better about my own body than I do. The world of breast cancer is absolutely excellent at stripping from each patient her own set of relationships to her body, her knowledge, her epistemology. In this warped world, smiling and “helpful” people, fliers, information is available at every turn to share with me their particular expertise about my body. Not about their body. About my body.

My body is constantly being assaulted by these staccato pieces of information from “helpful” people. It’s not the doctors. Nurses. Family. Friends. Grad students. Do this, try that, maybe this, maybe that. I feel like a tin can, and each directive feels like a tiny bullet has been launched from a slingshot. My tin can is riddled with pings. It’s a battle of tiny assaults, a residual wearing down until I’d rather just hide my tin can somewhere away from all these helpful people. Most people have not even looked closely enough at the tin can to know what kind of tin it is, or how the light glints off of it in the late afternoon, or how it’s anchored to it’s base. No one else is inside the tin can, so continuing to ping me with slingshots only increases the ping marks, even if the pings are meant to help me rally back into a good-tin-can shape.

It reminds me of an old song, about a pile of tin… “I”m a little pile of tin, nobody knows what shape I’m in. Got four wheels and a running board, not a Chevy, not a Ford.” Yep, no one knows what shape I’m in. And so they try to ping me into the shape of an older woman with breast cancer. Fail. And so they try to ping me into the shape of a healthier young woman. Fail. And so they just keep pinging. And it’s beyond intrusive.

My body is tired and riddled with helpful, stupid, pointless, smart, weird tidbits everyone unleashes onto me all the time. And so when I think about my pending amputation, and how I shouldn’t care, it’s also like I don’t want to care, I don’t want to feel and know from inside this banged up and out of shape tin-can-body. I don’t want to justify that I’m not being irrational. Patriarchy is so seductive, and I’d rather slink out of this body and slither around without a body, only a mind, and then I can use patriarchy’s rationality to know that all is well. Knowing from my gendered body, knowing from a feminist place, knowing I am terrified to know in such a way that engages the breast to be amputated. Knowing that I am angry and it is easy to reach to my bookshelf and disappear in critical texts that explain things away. Knowing that I don’t want to do embodied, knowing that inside of me, misogyny is alive and well, embodied in my sometimes-refusal to engage with my body. Knowing that patriarchy is alive and well in the breast cancer world. Knowing that I will write from this embodied place, and that soon, I will write from another kind of body all together. Knowing.

 

 

othering me: i can’t fold my body that way

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.

mammogram study madness

If you’ve been paying attention to the breast health and/or breast cancer world, you’ve noticed that recently there has been a flurry of activity around mammograms. The debate is summarized by the New York Times here, where basically the issue is that a Canadian study found that mammograms don’t, on balance, save lives from breast cancer death, though they do in fact detect more breast cancer.

Here’s the link to the actual study, which is a 25 year follow up to the original study. American entities-including the American College of Radiology are hot to discredit the studies based on all kind of issues. Probably the best critique is summed up here— she outlines why and when mammograms do and don’t work, and why she thinks the study is flawed, and what she— a breast cancer surgeon herself0 would recommend. One critiques include that the data is old, and current mammogram technology is way better than it was when the data was collected. Another critique is that if mammogram saves even one life, how could we say it was something wrong? People have written personal stories about why they never get mammograms, Ask me? Politicking.

I don’t think this is the right conversation. I think we should be talking about something else, entirely.

I think we should think long and hard about why we are exporting old, tired mammogram machines to the global South.

I think we should think long and hard about why there is no reliable breast cancer screening technique for women under 40.

I think we should think long and hard about why most of the research dollars are not going to metastatic breast cancer, which is what kills.

I think we should think long and hard about the environmental causes of breast cancer.

I think we should think long and hard about how breast cancer activism has been hijacked by companies that produce carcinogens.

So no, I don’t think the whole conversation about whether the Canadian study is methodologically sound is the right conversation. I think there are much more important conversations to be had. I think we need to think about politics, carcinogens, activism, lives. I think we need to think about why its OK to send “old mammogram machines” to the global South but not OK to use data from those same old mammogram machines in a study in the global North. I think we need to think about why no one wants to talk about the women with metastatic breast cancer, and I think we need to think about why there is no screening technique at all for younger women that is in any way reliable. Oh right, there is- MRI- but MRI is such an expensive technology it’s only available after a cancer diagnosis. That’s a win. Or a fail.

Let’s talk about some of the real issues, instead of whether or not these Canadian researchers should be slammed. I mean, really. We all know mammogram isn’t the greatest of technologies: in fact, its horribly flawed. Let’s talk about WHY that is, about the companies behind mammogram, about how Avon and Komen are wrapped in this debate, about where Chevron fits and about activism and environment and the production of plastics.

I just think this flurry of attention is entirely not what we need to talk about. It’s like incessant chatter on entirely the wrong plane.

Thoughts on Lisa Adams & the Media Flurry

So by now, you have probably heard about this whole Lisa Adams debate. Basically, two married journalists, Emma Keller and her hubby Bill Keller- wrote about Lisa’s awe-inspiring twitter presence (and related blog) with regard to her stage IV breast cancer. Both journalists were critical of Lisa, calling her writing about her cancer and about dying “TMI,” being generally totally tone-deaf, and in my opinion, absolutely missing the point of social media and why someone with a life-threatening illness, indeed, someone with a terminal diagnosis, might put herself and her experience out there for others to witness. I won’t rehearse these amazing critiques, responses, and thoughts on Lisa and her writing, but here are a few great pieces about what has gone down.

The initial articles shame this woman who has boldly, humbly shared her experience of dying. As if her metastatic breast cancer was a dirty, dirty secret she should hide. As if she did something to cause her breast cancer. As if she’s incapable of making her own decisions about what to share in public digital spaces. As if she were a child to be reprimanded for sharing her hurt. As if rupturing the picture-perfect personas that populate digital publics but that don’t really reflect life is a horrendous transgression. As if we were not all responsible for the cancer invading her body, precisely because we’ve not yet launched a massive revolution contra the insanely toxic capitalist invasion of our bodies, our earth, our world.

I was floored to discover Emma Keller, the initial writer, herself had breast cancer. How on earth…. I thought, and then, suddenly, it all made sense. She’s probably deathly afraid of a recurrence. Simply terrified. And there is Lisa Adams, blogging and tweeting away, the embodiment of exactly what she hopes to never be. She probably wants to run in the other direction, forget it ever happened, refuse the possibility. It would have been better if she just turned off her twitter feed.

The thing is, we live in comfortable la-la-land about breast cancer. Everything is happy-happy pink, people call themselves “survivors” (I just can’t get on board at the moment- it seems to imply that other people had to die so the “survivor” could survive those other, dead people. Can’t do it.), and we have celebratory walk-run-things in which we gather girlfriends, wave pom-poms, and adorn ourselves in clothing, makeup, and all kinds of decorations that come from the companies that produce the very toxins linked to breast cancer. It’s a la-la-land.

No one wants to know about the deaths, no one wants to hear about the treatments not working, no one wants to stare down the statistics and imagine themselves on the wrong side, no one wants to sit and listen to what it’s actually like, pom-poms and survivors aside. Lisa Adam’s tweeting ruptures the la-la-land. It’s public. It’s not pink. There’s no pom-poms, because, in fact, she’s dying. It’s not exactly something you can cheer on, there’s no “surviving.”

You might not hear these stories. I hear them everyday from other young women with breast cancer, from women with breast cancer in all different stages. I hear about, and feel the constant pressure to smile and say its “getting better” and that we’re “making it through.” I hear about, and sense, feeling alone in the midst of a crowded room, even when there are people bringing food and texting hearts and offering to be appointment assistants. I hear about and tango with the fear, the sadness, the horror that is not pictured anywhere, not reflected at all, except in the eyes of the other young women I know, who speak the language of chemo and hormone status and nausea.

Maybe the first writer, Emma, and her husband desperately need to convince themselves that what is happening to Lisa won’t happen to Emma.

The other day, I met a young woman with metastatic breast cancer. She’s the first person I’ve met who has metastatic breast cancer. We both attended a yoga class for young adults with cancer. She’s just like me. We were born the same year. She has a job and a fiance and dreams. And metastatic breast cancer.

I’m certain my eyes were wide. Inside, I gasped. My stomach churned. I desperately wanted to believe it wasn’t true, couldn’t be, impossible. I hoped it was a garish, ugly cancer joke. I would have done anything to make it not real, this young woman, standing in front of me, chatting about hormone status and chemo hats and oh- metastatic breast cancer. Anything. But there she was, with me, on the same road as me, attending the same yoga class as me. Nothing is permanent. Not her, not me, not the yoga class we attended. And so we sat and talked in that comfortable room with the high ceilings and drank tea, and there was nowhere to go.

I think Lisa Adam’s social media presence and the flurry around it should be a wake-up call. I think it should jar us out of the la-la land. I think it should make us think what might happen if we took her seriously, if we stared the stats in the face, if we got really up close and personal with death.

I’m afraid, though, that like so often on social media, the flurry will pass, and we will move on because we liked, shared, commented, participated. And Lisa Adams will still have metastatic breast cancer, and chemotherapy still won’t work very well for lots of people, and I will keep meeting young women with cancer, and some of them will have metastatic breast cancer. I don’t want it to pass. I want the flurry to come with us into the future. I want the flurry to grow. I want the flurry to be angry. I want the flurry to scream and shout and writhe and be black and ugly and angry. I don’t want it to be just a flurry of feeling. I want it to be a storm that doesn’t end until we actually deal with breast cancer. And all the other cancers. Then the flurry can die down, when there is no more cancer.

wiggin’ out with lacey bras & cowgirl boots

We all have power outfits. Clothes that, when they slip onto our bodies, breathe force into our footsteps and make the day a little bit brighter. First day of school socks. Lucky t-shirts. Magical headbands. I decided earlier this week, as soon as the requisite four-day chemo exhaustion passed, that I needed some power outfits to propel me through the next ten days, into which I must squeeze the activities, to-do lists, and writing of the chemo day and four exhaustion days.

Sitting down to write, I needed something more. The yellow cowgirl boots in the hall closet beckoned. And lingerie. Lacy and red, or a playful black tuxedo bra? Favorite jeans, new Christmas sweater. Dangley earrings and a fun hat topped it off. Now I was ready to sit down and write. It’s amazing what a little costuming can do! Evidently, it can convince me I’m ready to rock and roll.

And then I added a little something I thought I’d never add. That long red wig, sitting on a styrofoam head. I fit it to my head, tossed the curls. Huh. I was only planning on wearing a wig for job interviews (who wants to hire a bald assistant professor?!!?!) but what the hell, after all, I’m writing this dissertation conclusion so I can get a job, right? But really, I thought to myself, this is kind of silly. I already had decided how I felt about wigs: fake. Also, I hate the word wig: it sounds so nasty and so dirty, like flakey heads and horrendous baldness, and like grease behind the ears. Why would I ever associate myself? I already decided I didn’t need a wig to make me “feel normal” or disguise my baldness: after all, shouldn’t people have to confront the reality that cancer is invading our bodies? Shouldn’t they be made uncomfortable by my bald head, by the mundane nature of cancer in the everyday? Before her death from breast cancer, Audre Lourde wrote of her decision not to have breast reconstruction or wear a synthetic breast after mastectomy, deciding instead to bear the scars and show her body as a marker, an embodied political statement about cancer, and obvious sign that she was a warrior. Wasn’t being bald kind of the same, my bald head symbolizing the toxins and plastics that have invaded my body, destroying my bodies’ own knowledge about how to make cells? Besides, so many of the young women I know, just slightly ahead of me on this journey, have shared with me their own stories of rejecting the wig, rocking the bald head, being what one called “authentically bald.” Katie writes beautifully about this decision.

When I sent my brother the pictures of me in my now rapidly expanding wig collection, he responded by telling me which wig looked “most believable.” Of course, he picked the long red one, as most of the people who have known me the longest have. I had long red hair, for a long time, and so naturally, that particular gorgeous wig looks the most like what they know to be me. And isn’t that the point? Isn’t a wig to cover up something embarrassing, to make me feel like a “woman” again (uh-oh, now we’re back to gender….), to hide what’s underneath, which invariably is all that is dirty, ugly, ear-greasy, so no one knows? Oh, the stigma of a woman without hair, a woman with a wig. So isn’t a wig to cover it up, whatever “it” may be?

Well, no, no it isn’t.

It’s not really about believability. In fact, it’s not about believability at all. Nor is it about trying to recreate some image of me such that I forget I’m bald. I’m not trying to fool anyone here, and folks will definitely notice one day I’ve got long curly red locks and the next I’ve got a short blue & platinum ‘do. It will be especially confusing when I intersperse the wigs with my ever growing awesome hat collection (thanks, friends!) and then, sometime when I’m feeling brave, a henna-tattooed bald head day here and there.

When I donned that long red wig yesterday, suprise of all suprises. It was so fun! The curls were like, real curls. It was long, and flip-able. Full of body. Great for twirling. Next thing I knew, I was picking out a second wig from the Cancer Agency free wig bank. Mostly, the Cancer Agency wig bank is full of wigs that made me look like I was trying way too hard to be a middle-aged real estate agent, but I got lucky. My second wig is for those days I need to feel like Brittney Spears. It’s platinum and has dark roots and has sweap-ish bangs, and it’s long and straight. And best of all, it was free!

This morning it happened again. I woke up and bam, I needed to go to this wig store people have told me about. Immediately, I was on my way, head clad in a red cap, to Vancouver’s famed wig store, Abantu. There were wild, long, sweepy wigs. And purple wigs. I could go for inches and inches of tightly wound curls or a mohawk. And the price, the price! Affordable! I walked out with the two shorter wigs, one tinged with blue. I am itching to go back. I cannot wait. I want them all. I want color and spikes and curls and highlights and bangs and dreads and bobs.

So no, believability is not high on the list. I can say f*ck you, cancer and f*ck you, companies releasing toxins and f*ck you, systems that rely on plastic with anything on my head. It’s all about the performance. It’s about the guts to wear different hair everyday, and the playfulness in having too many wigs, the silliness in going from dark to platinum and bobs to waist-length.  Can you engage my hair drag? An endless parade of head-decorations- be they scarves, wigs, henna tattoos, or hats (and i will wear them all)– is to parody the absurdity of cancer. That is to say, to laugh in cancers’ face. To be careless with death. To dress up politics with morbid sparkle.

It’s a charade. A performance. A pantomime. A make-believe. An improvisation. A theatre. An experiment.

It’s grounded in the now, the present, the moment. That’s all we got. It’s not about hoping for a cure in the future. It’s about now.

It’s an assertion that something isn’t right in the world, and it’s way past time to notice.

It’s an insistence that we imagine something new. That cancer dis ease explode and shock. That we notice. That you notice. That something be done with morbid sparkle.

So engage my wig drag. My hair drama. My hats and my henna. We’ll see where it goes. Right now, it’s powerful, and there’s cowgirl boots and lacey bras, too. So f*ck you, cancer. F*ck you, plastic. F*ck you, toxins.

Wigs, though, love you.