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.

the day we sang to cancer, fuck you

I sing often. By myself. In the car with the windows rolled down. While I cook when I’m the only one home. I can sing in a group, silly camp songs that have little or no melody and are mostly screamy-shouty-silly. And sometimes when in a large group around a campfire, but only when there’s lots of others to carry the tune and I can mumble along under my breath. And that is it. Never in public. And so when we talked about me and some cancer buddies singing the chorus of the cancer-song I wrote with my friend Kate, I was of course really worried about my never-in-public singing voice.

Except today, I sang loudly and you could hear me and it was awesome.  Today we recorded the song. It was complicated and generative and full of emotion and awesome. We left Vancouver early, and pulled up to a house by a creek out in Coquitlam. In the basement recording studio they were setting up drums. Bit by bit, they worked through each line, practicing. The guys on the drums and bass, Kate on her guitar and singing, me in total disbelief that these people were actually recording this story in music, giving voice to my experience, listening and carefully crafting sound so it can be shared. I mean seriously- when does that happen?

On our way over, we discussed the way some folks raised their eyebrows about the swearing in the song. “It takes away from the message,” they explained, “It will turn people off.” Others worried we might offend health care providers with the chorus, which goes “And they took my left tit away like they didn’t even give a shit/and I’m the brink of a fit of rage ’cause all I’m surrounded with is breast cancer pink.” You know what I think? I think people are responding to the voicing of breast cancer as angry more than the expletives or even the “they didn’t give a shit.” I think it’s uncomfortable because its too close to the skin. It cuts too close to the heart. It’s too painful to think about. And so people react.

It certainly is my experience that they didn’t give a shit- literally, they cannot, because it’s not their breast immobilized and cut off. It’s not their breast that becomes hospital trash. They didn’t save the majority of my breast, the parts they didn’t use for the pathology. They trashed it. A cancer-buddy informed me today of a scandal in which hospital trash was used to generate heat and air conditioning for Californian homes. I could maybe get on board with heat. But air conditioning? No. Even if the doc has the best bedside manner ever and even though I certainly feel so cared for by them- they still cut into my body and removed a part of me and it’s gone forever, and probably a lot of it got thrown in the trash, and maybe its in a landfill next to used computer screens and broken wine bottles, and maybe there’s seagulls eating it, and maybe it is being burned to heat some Northern Californian home. That is not caring.That is participating in a system that doesn’t care, and even if you’re participating because you want to cure breast cancer, its still horribly pathologizing and its still not giving a shit. If it was testicles we were talking about, they would have found a way to save them by now that actually works, not like the half-assed attempts at lumpectomies that result in lower survival rates among young women, and that provide no comfort at all, especially if you’re under 40 and have no way to access any kind of reliable screening. Giving a shit would be answering my question when I ask how much longer until they get the needle out of my breast, and giving a shit would be offering me a screening MRI because my cancer was undetectable without me having to ask. Giving a shit is almost impossible in the system.
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Anytime any of us says anything negative about our doctors, or anything that’s not “they’re amazing they saved my life” everyone gets up in arms. There’s such a need to glorify doctors, and patients are supposed to be grateful. It’s gendered. An angry man would be more appropriate. I should instead be grateful they saved my nipple, grateful they reconstructed a lump that kind of matches the other half of my chest, grateful grateful grateful. I am of course grateful to be alive, but the purpose of the song isn’t to make those doctors feel OK about their work. Their paychecks should take care of that. The song is supposed to give voice to something else, someone else. There’s not words for cancer-trauma, it is especially word-less, especially unable to be metabolized in language, especially deserving of a giant fuck you. When I asked a fellow young breast cancer buddy if the swearing was OK, ending the question by explaining that some people had reservations, she retorted, “These people with reservations have their left tit intact? Then they get no say. It’s totally appropriate.” Obviously. The song is supposed to shock you into rethinking your assumptions about breast cancer, its supposed to queer this exhausting happy-happy narrative, its supposed to make our experience visible.
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And yet something felt weird, a little raw, kind of embarrassing as we sat together in the dark basement studio, and the sounds came together in the most awesome of ways. They appreciated the words, these musician guys, I think. But they were guys, they haven’t had breast cancer- or any cancer- and I doubt they’d call themselves feminists. We slipped upstairs for some tea. Kate felt it too, acknowledging the challenges in doing feminist work in a studio full of men. The breast cancer narrative is so entrenched and so gendered. It’s hard to queer that pink-ribbon story, hard to weave a breast cancer experience defined by anger and frustration into public discourse. I took great comfort knowing Kate felt that too, and that she’s been doing this kind of queer and feminist work for a long time, and sometimes it’s hard, but it’s still insanely critical, so important, good and hard work. You gotta look up to someone who rocks out like that- both literally and metaphorically- so hard. And so we took a few breaks. She’s been close enough to breast cancer that she can grasp the horror, see through the bullshit, and laugh at the right moments. Being able to both grasp the horror and laugh at it is both totally unique and incredibly important.

And when it was time, us cancer girls gathered around the microphone, and tentatively at first, we sang the chorus. And then again. And then again. And then again. Until we sang it so many times there was no more tentative, there was just lyrics on a page and a fuck you cancer feeling and us singing. It was awesome. And I sang in public. Or public-ish, at least.

It was all of the emotions, today in the studio. I was excited to be part of the process, I was nervous to sing, I was intimidated by these amazing musicians, I was in awe of the music, I was sad about the cancer, I was giddy to hear my story sung, I was pissed off about patriarchal capitalism, I was reflective about this whole long year, I was grateful to have such creative-earth-shaking friends. As the music and the feelings filled the basement studio I cried because it was awkward and the boys didn’t get it; I cried because cancer sucks so hard; I cried because when I heard all of our voices together- my voice and Kate’s voice and Kara’s and Kristina’s voices in the second to last chorus- it sounded like an entire cancer-chorus and I felt so not alone; I cried because it’s such an incredible thing to have this story-song and I’m so intensely grateful to Kate and the boy musicians and Kristina and Kara for making it happen.

We did it. It was awesome. You will hear it soon. I love it. I will keep listening, and the song will continue to be a generative source of healing, comfort, and awesome. Here are the four of us, after singing our hearts out in the chorus. It was incredible, and it was healing, comforting, and awesome. Oh, and we’re fucking pissed off about breast cancer.

pissed off

Mine Alone

I wish we could sit together, and have a cup of tea, and talk about breast cancer. And feminism, and race, and diaspora, and narrative, and academia, and the world. I think we could talk about all of those things, through the lens of breast cancer. After all, she wrote The Cancer Journals- the first (as far as I know) chronicle of breast cancer that critically interrogates the personal, political, embodied experience of cancer, in a way that only Audre Lorde can. Her work has mattered to me for a long time, since a prof assigned Sister Outsider in a freshman level course I took at Pitzer College, yet her Cancer Journals has struck a chord inside me unlike her other work. I have read and re-read passages, I have asked what treatments she did and thought of copying her, I have spent hours considering my surgery decisions in relation to her beautiful, political, writing about how breast reconstruction is a symptom of greater, uglier social ill surrounding the female body as an object of attraction, about how we need to be able to recognize each other, about how breast reconstruction let’s everyone live in la-la-no-cancer-land. In the context of cancer (but also always in the context of lesbian/black/feminist/mother/poet), she wrote: My silence had not protected me. Your silence will not protect you. But for every real word spoken, for every attempt I had ever made to speak those truths for which I am still seeking, I had made contact with other women while we examined the words to fit a world in which we all believed, bridging our differences. I wonder what she would have made of the world of blogging, of the proliferation of cancer blogs and dedicated cancer twitter chats and facebook announcements. Gosh, we need her. I am angry at breast cancer for taking her. And I am angry that decades ago- decades ago!- before I was even halfway through elementary school,  she called for a cancer revolution, she called for bodies to be dumped on the steps of what matters, she called for organizing— and you know what? It hasn’t happened. Because here I am, twenty two years after her death, and I had breast cancer, and her words still ring true. Not much has changed.

Tonight, I watched a film about part of her life– Audre Lorde: The Berlin Years. We sat together in the Vancity Theatre. I was buzzing, because earlier today we met with our fertility team and surrogate, and it looks like everything is going to move forward with crazy-baby-making involving our embryo in someone else’s body. It was the first time I saw lots of UBC folks since my diss defense, and there were many “Oh, you look so well!” “Oh, your hair is so long and looks so good!” and “So your health is OK, now, right?” comments. I do look well, my hair is (relatively) long, and since I used to have cancer, well, anything looks good in comparison, right? There’s such a fixation, I’m always reminded in these contexts, on my being healthy. There is no space for me to say I’m not healthy. And of course, I am healthy, and that’s awesome. However, I feel always compelled to blurt out, “But with breast cancer, no one can ever know. There’s no way to monitor.” It just feels so pervasively like, you must be ok and if you’re not I can’t hear about it/don’t want to know. Especially this month, in the wildly inappropriate pink celebration, I have to refuse the “but you’re OK now, right?” Because, and if only because, who ever knows? And also, not everyone is OK, and that is especially the case in the more aggressive breast cancers that affect younger people. But mostly, what if I stopped being OK? It’s as though there’s no room for me to qualify my health, and not even the tiniest nod to the insane amount of damage wrecked on my body, mind, and soul. I suppose I’m so bothered because it leaves me no choice to respond but with, “Yes, I’m OK.” Instead, why won’t they just ask how I am? Why can’t they let me answer? I wouldn’t spill my guts to most of these folks anyway, but then they could actually witness my statement that I’m OK (or that I’m not), instead of defining my experience for me and making me wish I could disappear into the ground. This is like human interaction 101: Empathy. Even Brene Brown said so. 

I loved the movie. I was entranced. I was hopeful- listening to this inspiring feminist. I love the way Audre Lorde speaks, the slowness of her words, the carefulness in her speech, the way she uses her eyes to really get right at the heart strings, to produce feeling and wonder and hope in only a few words. What a gift that her words are recorded anywhere. I was in absolute wonder. She is awesome. But then they started down the cancer route. It was like a splinter underneath my fingernail, wiggling around in there. First the doctor on camera said she had survived longer (her breast cancer was metastatic) because she was “special.” Ok look, she was special. But so is everyone else, and I bet she’d be the first to argue that, and then maybe she’d argue for just health care practices (she went to Berlin to access alternative health care). I loved every second she was on screen, but these kinds of moments left a metallic taste in my mouth, the feeling that it just wasn’t represented as carefully as it could have been, the feeling that her cancer words were bruised and misunderstood.

Maybe I’m over-reacting. Maybe I am over-reacting because I over-react with any kind big-screen cancer representation. Maybe it’s still to raw. Maybe not. Maybe I’ll always react. But all I wanted to do was book it, as soon as that screening came to a close, and talk with my cancer-buddies, who I desperately wished I had dragged with me to the screening. And as I drove home, I realized that the kind of profound misunderstanding I felt after the film, as more questions of “But you’re OK, now, right?” peppered the small talk is mine alone. And so in solitude, I drove across the bridge, and it was silent, and it felt right, and the air felt heavy with my thoughts and my anger at cancer having stolen Audre from the world, and my rage that nothing has changed, and my sadness that I can’t have a cup of tea with her.

And then I found myself in Sammy’s arms, and he reminded me that today is a day to celebrate. After all, before I went to the film we talked hospitals and birth weights and ferry rides and midwives with our surrogate over lattes after we all signed endless paperwork at the fertility clinic. It felt good, and we all were giggling with excitement, and I can’t believe it’s actually happening. And it’s pretty freakin’ awesome to figure out how to do something you wanted really bad, especially when you thought it had become impossible. Today, we made real gains on scaling up the side of an im/possible cliff. For months, all I could think of was the cancer killing me. Really. I was certain the cancer would kill me. But my certainty has given way to something else, and now I’m only certain we can have what I thought was impossible. Im/possible. What a hopeful slash.

And so we did. Cookies and tea. About the best kind of celebrating as far as I am concerned. Cheers, we said, because we passed the phsych screening test to proceed with surrogacy. Cheers, because we think we’ve found the right woman to carry our baby. Cheers, because the doctor was hopeful and helpful. Cheers, because we can still fight for what we want, even if its not how we envisioned it, because we want it bad enough to be creative and silly and stubborn in our pursuit. Cheers, even though there is darkness, even though there is sadness. Cheers, because the darkness’ twin is light, and cheers, because they always exist together, balancing and sometimes, producing a grounded hope. Grounded hope.

Mine alone is the feeling of knowing that Audre Lorde film from a white/cancer/feminist perspective. That’s both terrifying- mine, alone?- and liberating- how many multi-faceted, creative, surprising interpretations were there? What would happen if we could all listen to each other reflect on the lifework of this ground-shaking feminist/lesbian/poet/black woman? I wish we could sit with tea, I wish I could listen to her. But instead I have her writing, her texts, her poetry. And you bet I’ll be reading again, soon. And mine alone will be the feeling in the bottom of my stomach, when I feel her stories, when I know the cancer stories from the inside out, when I hear them reflected by my cancer buddies, when I hear my own cancer stories echoing hers, when I wonder why nothing feels like it’s changed, except that now breast cancer is dripping in pink ribbons. Mine, alone. A power to claim, that is, indeed. It is most certainly a way of knowing that is critical, and it is mine.

If I didn’t define myself for myself, I would be crunched into other people’s fantasies for me and eaten alive. – Audre Lorde