the beginning of the cancerversaries

On August 28, 2013, I had an ultrasound. The tech was so unimpressed with the lump that photo (1)she wouldn’t even invite the radiologist in. She did, though go out and speak to him, at which point I snapped this picture. For the next many weeks, I obsessed over this photo. I compared it to photos of cancer, of fibroadenoma, of benign lump in young women with the help of Dr. Google and her cousin, Dr. Google Scholar. I sent it to people who I deemed to have excellent googling skills-you know who you are- and we compared notes.

A few days ago, it was August 28, 2014. The day that marked the one year anniversary of the beginning of this massive mess, the one year point from when this picture took up residence in my phone and in that place in my brain in charge of anxious googling. photo (2)This time, though, it was different. On the 2014 occasion of August 28th, there were no ultrasounds. There was a phone call about a post-doc, and an art-night with a palette full of acrylics. Sammy made boat paintings, I started working again on the famed breast casts, though I left the “nice” one untouched. What a difference 365 days makes, and yet, what not a difference.

Still, images of breasts that bear only a passing relation to what you see underneath a sweater dominate the visuals. Images, and imaginings, of what is inside have morphed from the technological rendition of cells beneath my skin to the artistic rendition that so many have molded together in memory of what once was. Neither the lump in the ultra sound nor the left breast memorialized in the breast cast remain in the world. They are but mere traces.

On the left breast, I glued words from pathology reports, from medical notes, from surgery directions. On the right, I glued lines from random pages of my dissertation, but you bet I chose which lines. And then came the heart. Pumping blood, veins pulsing, over top, even though, in spite of the medical jargon, the hospital terror, the doctors’ reign. It’s not done yet, and neither is this season of cancerverseries. The calendar is filled with cancerversaries between now and the end of the year: the first biopsy, the first lumpectomy, the waiting, the diagnosis, the fertility, the first chemo….

And I, smart woman that I am, timed it so well. In case I should ever forget about cancer, we’re on the cusp of Pinktober, the breast cancer month, and the decorations are already being hung. They won’t let me forget! People are asking about the CIBC Run For The Cure, I am rolling my eyes about the number of breast cancer flags bordering the Cambie Street Bridge, and the bank employees have all donned little pink ribbons next to their name-tags. More on that, soon. For now, I should make some coffee and hunker down with my job letter, and the color-coded excel document of jobs and post-docs and opportunities and to-do lists. Maybe the academic job market will let me forget.

loving kindness, my tenderhearts: before and after

Before I had cancer, I never said things like “loving kindness” and “tender-hearted,” unless, maybe, I was talking about orphaned bottle feeding kittens. I mean I fancy myself a good facilitator, one who opens spaces for young people to participate in social justice initiatives and media programs in risky, empowering, hopeful, terrifying, bold ways— but mostly, I fancy myself the facilitator. I like to be part of- ok, in charge of- moving and shaking initiatives, feminist power-house communities, youth organizers, creative media-makers.  So I might have told my youth to be gentle with each other, to tread carefully around the stories they shared with each other about social justice, to witness each others’ stories and the group process— but I wasn’t really one to get all up in the witness-y/tread gently/tender-hearted discourse around my own experiences of the world. I mean hey, I go to yoga, I eat good food, I bottle feed kittens and write about gender, media, and civic engagement. Isn’t that enough tender-gentle-things? Warm fuzzies all around, too, as long as I’m in charge. Of course, I’d give my speil about my experiences in order to model how I wanted youth to tell their stories with vulnerability, but I kind of thought grown-ups stopped doing that. Like once you out-grew the youth category, the group hugs and silly ice-breakers faded into the distance and were replaced with high-backed chairs and yellow notepads and people working in offices (oh, the horror!).

Enter cancer, at which point I ceased to be in charge of, like, everything, and then I met all these people who kept saying “loving kindness” and “tender this heart and tender that soul” and the like, until eventually I sort of started thinking (not saying, but maybe whispering and definitely writing) those things too. Even though I pretty much felt like I was dying last February, someone pointed me in the direction of Callanish and I went to a young adult cancer group there, and it was tender, and it was loving and it was kind and it was real. And in July, I went to a retreat, and it was also tender, and kind, and loving, and real, and careful, and magical. And today, I worked with the artist there on my breast casts, and it was tender, and kind, and loving, and real. See, I’m writing about loving kindness and tender moments, even if I’d rather hop on a roller coaster and whirl right through them in a blur so colourful and so fast no one would really be sure what was happening, not even me, but soon enough, we’d be on the other side, breathing hard and waving our hands to gesture at that one time, when I had a touch of breast cancer.

But since my fairy godmother apparently forgot to leave me a magic wand to grant myself these kinds of wishes, I’m left instead with an organization that cares, an artist who does work with girls in Nepal on the side and who stocks her art therapy studio with glitter and feathers and acrylics, two breast casts that my dear friends CJ and A made for me when we had the infamous “Goodbye Left Breast Gathering,” and a body that no longer fits into these two breast casts.

I literally no longer fit.

My breast is not that shape anymore. It can’t move and bend and squish into a pre-determined form the way a natural breast can, much less the form that was made from my old breast. Sounds kind of like my life trajectory, doesn’t it? Like pants you discover are too short five minutes before you need to leave for work when you’ve already picked out your top and your shoes and your earrings and they only match the now-too-short-pants. It’s a rushed, shocked, kind of not-fitting, but also the kind that can’t be given too much attention because there is too much else happening, too many other moments exploding and opportunities blinking and desires flashing, and also, you still have to find some other pants to wear because you can’t well go to work in your undies, even if they are sparkly and lacey, and you do have to go to work, because you need to pay the rent and your students need to learn about globalization and you want to go on a fancy vacation, which requires some ahead-of-time work, of course.

You know when it really hits me, this not-fitting, the absurdity of this fake-breast shoved under my pec muscle, albeit shoved skillfully by Dr. Yoga-Surgeon, an artist in her own right?  When I chop garlic. Weird, right? You see, I’m right-handed. So I smash the garlic cloves, with my right hand on the butt of the knife, and my left hand pressing down sideways on the sharp part, and the garlic peel curling off the clove underneath the side of the knife, and the smell erupting from underneath the knife and the kind of sticky garlic residue leaking onto my left hand. To do all that, I kind of lean into my left pec, and my hips press into the counter, and I’m sort of on my tippy-toes. And the breast imposter, what does it have to say about smashing garlic? It sears. It aches. It screams, “this is not how it is supposed to be.” The muscle is angry to be separated from my ribs, and yanks the whole boob-expander up my chest each time I crush a garlic clove, in what would be the weirdest “I can move my boobs on command” party trick ever.

So here I found myself, with the Art Therapist Who Presides Over Feathers and Sand and Acrylics, and the breast casts that seem frozen in a moment in time that is so wildly distant, a moment in time I so achingly want to inhabit. I painted the first one, the one we made as a practice, white. I know, I know. White. It’s the same color as the breast cast. Would you even know I painted it? Who cares if you know? It’s for me, anyway. And I added some silver and some blue, and more white. Inside, outside, white. Touch of silver. Maybe there was a touch of cancer underneath. I’m pretty sure the Art Therapist Who Presides Over Feathers and Sand and Acrylics doesn’t care if they’re white or plain or ugly or offensive, so why should you? I want to cut up the words from all the medical files, and stuff them inside of the breast as it was, plaster them on the breast pathologized and ruined, the breast that kept the cancer inside, and I want to splatter paint it with the pints of blood they drew from my poor veins, I want to trace the violence they enacted on my body on the faint lines of paper mache that tell the story of CJ and A, molding the breasts casts while everyone I love in Vancouver looked on.

It’s a tender evening. It’s a night we cooked together because we couldn’t bear to be far apart, and we smashed garlic for the arrabiata sauce, and we poured wine and bottle fed kittens and snuggled on the pink shaggy carpet in our living room. There is no roller coaster for me to hop on and make curlycues with instead of making my careful way through the cancer evidence, the breast casts and the fake boob, the scars and the friendships, the nausea and the memories. So maybe there is such a thing as loving kindness. They say there is. Maybe it’s like cuddling on the shag carpet and bottle feeding kittens and watching movies. Maybe grownups can still have group hugs and blue elaphants to sleep Maybe it’s like feeling tender and open and taking a bath and reading a novel (gasp!) instead of hacking away at the job letter. Maybe it’s just letting things be how they are. Maybe it’s just playing the ukelele with Sammy until the moonlight streams through the window.

Maybe.

chasing life: sex, gender, cancer

Lately, I’ve been following abcSpark’s new show, Chasing Life. It’s about a young woman diagnosed with Leukemia at 24. It’s about her experience: what’s happening, who she tells, how her family and friends handles her illness- in both awesome ways and shitty ways, the cancer-friends she makes, the insane complications and heartbreaking moments. It’s got its fair share of problems I could dissect as someone committed to a feminist analysis of media texts…. but as another young adult with cancer, I love it. They get a lot of things right- the anxiety about telling, the over-caring and the under-caring, the fertility preservation issues, the total crap that chemo is, the lifelines that cancer-friends become even though you’ve known them for such a short period of time, the weird and hopeful naturopathic treatments.

One of my very own friends who has really ridden the cancer roller coaster with me, someone who has come to almost as many appointments as Sammy, who has heard the good, gross, and horrific, who has shown up always even though it was hard, has been watching Chasing Life alongside me. I did have to suppress the familiar feelings of critical engagement when I first saw this scene, but I did suppress them, if only so I could stay engrossed in the story, until that very own friend of mine who’s ridden the cancer roller coaster with me brought it up again.

The scene is this: In episode 8, the group of cancer-friends get together. One of the young women- one portrayed as always very sweet, with a scarf on her (presumably) bald head, is about to live out one of her life long dreams. The cancer-friends gather in a strip-bar. And suddenly, we see this always-sweet-always-scarf girl on stage, wearing a fabulous and luxurious, long, blonde wig. She’s pole-dancing. She’s taking it off. Because we know she has cancer and is so sweet (and presumably innocent because she’s sick) her pole-dancing is pretty much absolutely adorable, her friends are thrilled for her, and this one rich, white-boy cancer-friend who supposedly makes all his cancer-friends’ dreams come true with financial gifts (he paid for the main characters’ fertility treatments, anonymously, and took another cancer-friend on a trip he’d always wanted to go on pre-death) shines as the humble but sweet and so generous star- he arranged  this opportunity for the sweet cancer friend to pole-dance. And then Ms. Stripping/Pole-dancing does the thing that makes us love her even more: she whips off her wig to cheers of “Take it all off!!” You can watch it here on Youtube- it starts at minute 18. 

OK. So my first thought, when I watched this scene, was- YES SHE IS SEXY. YES SHE CAN BE SEXY WHILE SHE HAS CANCER. YES SHE WANTS TO BE SEXY WHILE SHE HAS CANCER. I was happy to see a representation of cancer as normatively sexy, and excited to talk to my cancer-friends about how cancer = not sexy, and there was this Chasing Life moment to talk all about sexy, cancer, gender, desire. So what does it mean for a young woman with cancer to want to be looked at, to want to place herself in a situation where others see her as sexy, to dare others to see her as a sexual being? What does it mean to be able to acknowledge those kinds of desires? I mean so many people have them and ignore them, and here we have a media representation of a sick girl throwing her sexuality in your face in a normative way, in a way we are accustomed to seeing healthy, hot, hyper-sexualized young women?

My dear appointment-attending-always-showing-up-even-when-it-was-hard friend, though, she called me and was horrified at how this young woman could only be tentatively sexy because she’s the “godly” and nun-like character, the one who could do no wrong- she does embody the typical good-girl persona, the one who could never do any wrong. There is a serious problem in our world, where young women’s sexuality is persistently denied, framed as dangerous, racialized, and otherized. We police girls and young womens’ bodies with school dress codes, decisions about what’s “appropriate,” and regulations and standards that dictate how young women should move, who can be sexual, how whiteness and upper-class-ness correlate to a latent but private sexuality. This scene played into many of those  stereotypes.

Yet, I’m not ready to give it up. There is a way in which in contemporary media culture, sick and disabled bodies are not sexual bodies. Sick bodies are rarely cast as desirable bodies: rather, they are to be taken care of, they need help, they are infantilized when everyone else knows what is better. Sex is rarely discussed by doctors, though sex conversation runs rampant in young adult cancer circles. There’s an undercurrent, but when have you seen a body so medicalized as bodies are when they have cancer, also take up normative representations of what is sexy? Rarely.

It’s an interesting conversation for me, because sex, gender, and cancer all circulate around the body. As someone who has had breast cancer, my cancer feels like it embodies all of the conversations surrounding gender, image and sex in new ways. I am mostly left with questions, as I rethink this sexy pole-dancer scene. Sure, I might have liked it more if she had some kind of sex desire that was totally non-normative. But would I have even recognized it as sexy? What I can definitely recognize as “sexy” is a girl dancing on a pole, even if I can critique why that particular image is really problematic.

So then, what happens when the infirm body, the chemo-body, the pale body, the cancer-body takes up pole dancing? What about when she owns a secret desire? What about when its arranged for by a young white guy who ends up looking like a hero? Do we all need young, cute, rich white boys to manifest our desires, put us up on stage? Is it his gaze that makes her sexy, his acknowledgement that she looks good, or is it that she actually looks good? Why is he so prominent? I think part of what seems really fascinating here is the relationship between this wish-granting rich white cancer boy friend, and this young angel-like girls’ desire.  There’s something really sticky, really powerful, really concerning, really shocking, really hopeful-  about a girl body with cancer doing a sexy dance in front of her cancer friends.

Lots to think about tonight, about the intersection of sex, cancer, sexuality, dancing bodies, gender, cancer friends, fake breasts, media images and representations…

academic cancer fashion fail

***Disclaimer. This is an off the cuff response. A more formal one is coming. 

 

So when I was on chemo, I became aware of this painfully horrendous academic project that UBC funded with $10,000, a project in which Dr. Firkins partnered with a scientist, to look at cancer cells in various stages and craft them into dresses. Yes, you read that correctly. She made ball gowns out of cancer cells. So when I was on chemo, all I could think of was, what happens to the ball gown when the cancer cells are pumped full of poison and all the other cells are collateral damage, and the body with cancer feels like it is dying? Is there a dress for that? Does the dress transform, do the fabrics whither and lose colour, do they shrivel and morph and warp and make the person who is wearing them feel like they are dying? What happens to the person wearing the dress when the chemo unravels the cancer-cell threads? Do they end up naked?

So really? The Wall Institute  gave $10,000 to this prof for this? And she made some ball gowns, based on cells, acting under the assumption that “all conversation is good conversation,” that getting people talking about cancer is inherently going to do something good? She says in the extensive press she has received that she hopes to incite conversation about cancer, and with people who have had cancer. I assume she’s talking about breast cancer, since she refers to the pink ribbon, but can find nowhere where she makes the link explicit. She does say, though, that ‘Many women who have battled cancer express a disconnect with the fashion imagery that commonly represents the disease,’ and she is talking about the pink ribbon context. Does she acknowledge why? I can’t find out where. Does she talk with women who have breast cancer? I don’t see any research, and I haven’t heard about anyone being interviewed in the breast cancer community. 

Making ball gowns out of cancer cells and hoping they serve as an alternative to pink ribbons is kind of like taking the bruise patterns from abused women and making dresses out of those patterns. Hey, find the beautiful, right? Rings kind of hollow when you think about finding the beauty in bruises on abused womens’ bodies. Yah, rang kind of hollow to me, too, when I, a woman who has had cancer and will live in an uncomfortable relationship with it always read the articles, again, tonight, when StupidCancer posted them on Facebook. It makes me shudder that $10,000 that could have gone to metastatic breast cancer research, or research on the creative and alternative narratives women under 35 tell about breast cancer, or research on the uneven adjustment to sex after cancer went to fund someone making whimsical ball gowns from images of cells- it sounds like mostly from brain cancer- of mutating cancer, especially since there’s the unstated acknowledgement she’s talking about women with breast cancer even though that doesn’t always add up with the cells she “crafted” from. Firkins explains that  ‘My hope is that somehow through fashion, I more closely tap into what a woman might be feeling about her body as she undergoes [cancer].’ Really? I feel like you just took some pictures of cells, rode the wave of this hot-button topic for funding, and purported yourself as an expert. As a young academic from the same institution as you, I feel like you were not careful, like you wanting to tap into my experience is more like you ripping what I know to be true from my hands in order to appropriate it for your research project. 

Firkins writes that, “One of the purposes of the project is to get some response from the dresses.” Again, I feel like she is riding the wave of breast cancer, letting the energy around pink ribbons lift her up for all to see, and the energy will lift her up precisely because this project does very little- or nothing- to challenge the patriarchal, heteronormative, extraordinarily gendered nature of the pink ribbon breast cancer wave. Firkins project might not be a pink ribbon, but there is no critical engagement with the pink ribbon, and it certainly poses no threat. Firkins writes about her “friends” who have had cancer who had body image issues, and who’s experiences instigated this project. 

See, I got body image issues from cancer, too. I got body image issues withy breast cancer because the patriarchal world I live in over-values my breasts, positions them as the property of men I  come into contact with. After all, how many people have asked, in relation to my mastectomy and reconstruction decisions, “Well, what does your man think?” Mostly they ask it without asking the twin question, the question that’s WAY more important, “What do you think?” I have body image issues from cancer that have to do with feeling, with sensation, with being me, with how I can be sexual. There’s really not a lot of space for me to talk about sexual agency, as a woman, in this patriarchy. And your dresses don’t give me the space. In fact, your dresses miss the point entirely. I’m not angry about pink ribbons because they mis/represent my cancer experience, I’m angry at pink ribbons because they totally obscure the political bent to how I feel about and experience breast cancer. Giving me another alternative that takes what shattered my world and makes it into a ball gown over which to be oohed and aahed, a gown that may incite conversation but not critical, political conversation and action simply acts in concert with the same heteronormative patriarchal capitalist tendencies that made me pissed off at the pink ribbon in the first place.

OH, I am angry. I have pages to write about how this is totally, wildly, not OK. I am so sad you’ve gotten this much press, though I realize, when you play into the system and ride the waves, that is what happens. You know, though, those waves drown people. People die of cancer. People are crushed by cancer. People struggle with cancer. 

It’s big, it’s dark, it’s complex. You are correct, in that we need conversation. But the kind of conversation we have is critical, and it can’t be this easy, celebrate the dresses, look what I made that’s pretty to make survivors feel good about their bodies, kind of conversation.

We are starved for conversation about power. Don’t distract us. 

i challenge you to NOT take the #icebucketchallenge

So, the #icebucketchallenge. It’s viral. It’s on social media. It’s got people doing something closely resembling “good” in the world. Sounds like something I’d love, right? While they don’t even come close to the level of effed up of the Grand Old Pinkification of Everything for Breast Cancer, a campaign that has boldly slapped pink ribbons on all kinds of carcinogens, I won’t be taking the #icebucketchallenge for ALS.

The #icebucketchallenge for ALS supposes that raising awareness is good , and that “getting people involved” is good. The premise here is that you dump a bucket of ice on your head “for awareness,” and post a video of yourself dumping ice on your head, after which you are crowned with the glory of nominating three others who are either supposed to dump ice on their head and nominate three people or who are supposed to donate $100 to the ALS Association. It’s a movement of short videos on social media, and my Facebook feed is filled up with the ice-dumpers. The ALS Association has raised millions, and that’s awesome. I’m all for curing ALS- it’s a horrible thing, and they need funds for research. For a great economic analysis that I could never articulate, read this article. But even without it, there’s something a little weird here, isn’t there? I mean, after all, what does ice on the head have to do with ALS? And why does everyone “care” all the sudden, and what kind of “caring” is it, really?

Let me remind you: dumping ice on your head is what you do in order to avoid giving $100 to the ALS Association. Supposedly, the #icebucketchallenge raises “awareness.” Of what? How our friends look in wet t-shirts with ice stuck in their bras? While the videos dot my facebook feed every time I check it, I’ve not learned a single thing about ALS from them. I don’t know what the ALS Association is doing to cure ALS, I don’t know what causes ALS, I don’t know anyone with ALS, and I have no idea how ALS affects the families of diagnosed patients. I’d say my awareness is painfully lacking, despite watching these videos.

So is this an instance of clicktivism, of slacktivism? What is the actual work being done by posting these videos? By that, I mean, what  moves you to participate? Is it because its silly? Are you moved because your friends did it? Do you want to be known as someone who will do something crazy for a cause? Be real when you think about why- its certainly more than believing in eradicating ALS, because if that was your desire, might you do something more linked to ALS, something with a more significant direct impact? Certainly there is a kind of acclaim you get from your friends, that warm fuzzy feeling of being recognized as “part of the solution,” that way that social media lets you “take a stance” (against ALS? for wet t-shirts?) as someone who believes in a better kind of world. And who doesn’t want to be known as believing in a better kind of world? This is the blessing and the curse of our digital times: the ability to reach millions, and the capitalist tendencies and values that warp doing good, that dilute awareness, that twist what has the spark of organizing and actual movement into an event defined by show and tell and the number of likes on your video. I mean sure, feeling good is nice. But what does it do for ALS? When do you think about ALS actually, after you dump ice on your head and post it from your phone to Facebook? When did you listen to the people living with ALS?  I mean please, if all it takes is raising awareness…  I suppose my issue is with awareness itself, with awareness as a stand-in for political action.

You know what I think? I think it’s insanely weird that my white friends are doing the ALS ice bucket things, and my friends of color are posting news about Michael Brown being gunned down en route to grandmas. The Brown tragedy is a tragedy because black lives matter as much as white lives — be they white lives afflicted by ALS or not. Yet, it seems like the coverage casts Michael Brown as a tragedy because he’s a “good kid,” on his way to grandmas one afternoon and off to college soon thereafter. Setting him up that way makes it seem like black lives don’t matter, except for a few boys who are “good kids,” unlike the other black boys who are, apparently, not good kids. I think that the ALS #icebucketchallenge is a safe alternative for white folks to position themselves as activists, as in the know, as believing in a better world. But you know what? It’s risky for white folks to align themselves with enraged communities of colour, and to educate themselves about race and racism and oppression. It’s much easier to simply dump a bucket of ice on your head and count your activism done for the day. But as you do that, remember, young black men are dying at the hands of the good ol’ American system, and when you took the easy road out and dumped ice on your head and made sure everyone knew you were the supportive, fun, good kind, you didn’t also post about black teenagers dying because they live in a racist system. 

So think again. Educate yourself on the issues, on the histories of racism, on how Fergussen is a microcosm of the US, learn about how histories of racism shape experiences today. Don’t tell me you’re not racist, so you don’t need to do any work. We all live in a racist society, and it’s not about you. It’s about challenging a system that allows us to turn a blind eye when a young black teenager is shot en route to grandma’s, a system that cheers for ice bucket-dumping, a system that privileges white people in ways that we white people have a hard time even identifying because they are so insidious. We are all responsible for what happened to Michael Brown, and it is only by taking responsibility that we will eradicate racism. So go educate yourself. I say, start with http://www.blackgirldangerous.org/. But do your own work. Don’t expect others to do it for you. Educate yourself. Already. 

Yes, I’m grumpy. I know I have family members (and others) who will qualify my reluctance as grumpy, as unwilling to even try. They will crow about the millions that have been raised, they will ask how it hurts to dump ice on your head and have a little fun. Sure, it’s not “hurting” per say, unless they are from California, in which case I will remind them they live in a state desperate for water, in a season defined by drought. That so many communities all the world over are short on drinking water should be enough to stop anyone, but especially enough to stop those who are living the drought themselves.

So I’m grumpy. A killjoy. It’s nothing new. In fact, I think we killjoys actually have more fun than the rest of you. We have fun critiquing. We have fun skipping. We have fun playing with paints and we have fun wine tasting. We just choose to think a little harder about our actions, especially when they are politically aligned, or mis/aligned. I mean if we really wanted to have fun, we could just pick a random cause, assign a random action to “raise awareness” and see how many people would sign up to play “we’re following the leader, the leader, the leader…”

Thing is, there’s no thought in “we’re following the leader.” There’s no critical reasoning. No personal experience. No braiding together of community. No struggle over knowledge or meaning or future. It’s just sheep, dumping buckets of ice over their head and not donating and not learning more about ALS and wasting all the water in the middle of a drought. 

So go ahead, do your #icebucketchallenge. Be real about who you want to see, how you want to look, why you are doing it, what kind of work it’s doing for you and your image. Question how this action got connected to ALS, why, by who, for what. And if you want to make a difference, do something real. Donate funds. Read a bunch of articles. Make a film. Volunteer your time. Open your heart. Act with loving kindness. Try thinking critically. Bring a friend a meal. Read a book. As for me, there will be no #icebucketchallenge. Instead I’m going to try to convince everyone that jumping like a bunny over all the sidewalk cracks is for hang-nail-awareness. Because really, guys?

A Tale of Two Lumpectomies: Oh Good Intentions

Remember October 7, 2013? Oh no, of course you don’t remember. That was Before Cancer, that was Before The Blog, that was quite simply, before. On October 7, 2013, I had a lumpectomy of what we thought was a non-cancerous lump in my left breast. Obviously, we were misguided by the radiologist who said “I’d fall out of my chair if you had cancer.” Even before we knew of the cancer, that lumpectomy was a big deal. My mother activated the gossip chains and my cousins called. My friends came over. People brought ice cream. Sammy took time off work. The list of people who requested a “she’s out of surgery” text was quite lengthy. It was a Big Deal. 

Fast forward to the same surgery, on the other breast, on August 6, 2014. It was so completely the opposite. It was not a Big Deal, and it was not even a Little Deal. I forgot to tell my bestie the date was changed. I bottle fed a litter of kittens as soon as I got home from surgery. Sam didn’t take any time off. Friends patched together who would take me, wait with me, pick me up (and I am insanely grateful for the way they made me laugh during the ridiculousness). No one required a “she’s out” text. I went to yoga two days later, ran a media workshop four days later, and chucked the pain meds into the overflowing medicine box without taking a single one. It was so completely not a Big Deal. It was not even a deal of any kind. It just kind of happened. 

It’s all relative, isn’t it? What we need from others, even for the exact same procedure, varies widely based on where we are in life, what’s going on, the circumstances and relative experiences. Of course, I got incredible emotional support from lots of people for both procedures, and amazingly, I got what I needed both times. The first time, I needed lavish attention and pints of ice cream and reassurance; the second time, I needed mostly non-attention sprinkled with humor about the ridiculousness and not too much concern over what was happenning, pathology reports, or outcomes. I got it, mostly, too, which is remarkable. 

It’s remarkable because when we try to help others in moments of crisis, we often lean over the fence and peer into their yard, assess the damage, and throw whichever life ring feels right in our hands. In our hands. That’s the thing, though. When we throw life rings over fences to friends in trouble based on what feels right in our hands, we forget that not everyone’s hands are the same as ours. So often, our helping of others is based entirely in a) our perception of what’s going on and b) what feels right to us. That’s really great sometimes, and sometimes it fails so badly. Like really badly. 

See, there’s two kinds of support communities for me— there’s the always there, always was there, always will be there crowd that includes family, friends, and others who were horrified at my diagnosis and wished they could do more than throw life preservers, and then there’s the young-cancer community. The latter is a community that is really different because they know more than the forever community about what the ground under my feet feels like, about what kind of life preserver I might be able to grasp, about when I really just need someone to swim alongside me for a while. They are separate, these two communities, and they are two communities I want to keep separate- for of course, I don’t want my forever community to become part of the cancer community. 

I want to urge us, though, to recognize where our good intentions come from. When we go to help, who are we helping? Who’s hands are we considering when we select the life preserver, and how could we possibly understand what life preserver would float best if we’ve never had an experience like the person in crisis? I know that when there are lots of people around throwing life preservers, it can be overwhelming. Often, the life preservers come in the form of advice and suggestions, ideas people have from leaning over the fence and staring at how I’m dealing with cancer, and then opening their mouth to tell me how they would do it, what I should do, how I should do it, how they will help me do what I should do…. 

And it feels like judgement. It doesn’t feel like the loving advice/help/suggestion/support it is meant to be. It feels like someone who has never been swimming critiquing my breaststroke kick. I try to shout back that their suggestion won’t work, but they’ve never been swimming, so they don’t understand how the water feels when my feet are flexed and kicking, and besides, I’m swimming, and I have to keep swimming, or at least, treading water, so I can’t really stop to chat without my mouth filling with water and then the language gets all garbled and the person with the suggestion for my breaststroke kick just keeps shouting their idea louder, and I know it won’t work, and they keep shouting because they love me and eventually I just put my head down in the water so I don’t have to listen to them anymore. And I promise, it was a good intention. 

What did I need, though? I needed someone to follow my lead. I needed them to stop leaning over the fence and peering in with ideas and suggestions and instead, to lay down on their side of the fence and listen through the wood slats, and tell me that they’d keep laying their and listening until I got to the part of the pool shallow enough to stand in. I needed them to start working away at the dirt under the fence, slowly and consistently, until there was enough space to wiggle their fingers through the dirt and into my hand. I needed them to momentarily suspend all of their knowledge (which may be vast) about my situation, and to stop giving advice, and to just be there instead, and support my decisions and actions and needs even if and even when they look all wrong from the other side of the fence. 

It’s amazing and remarkable that, given our desire to lean over fences and help people we care about with suggestions and advice and support we know will work anyone ever gets what they need– and not just in cancer, in any crisis. The first lumpectomy, I needed the attention. I needed the long list of people waiting for a “she’s ok” text. The second lumpectomy, I didn’t. Sure, I still needed a friend to come with me a curse the doctor who put the wire into the lump while I was awake and took forever to do it, and I still needed my mentor to say “well… it is a big deal” when I assured them it wasn’t, and I still needed some cancer-friends to check in with me after the surgery. But I so deeply appreciated that there were many fewer voices shouting suggestions over the fence. I sighed a breath of relief that daily life could go on. I needed some semblance of normal. 

So, on helping. On good intentions. Sometimes they hurt. Sometimes they grate in ways we never expected. Sometimes it’s worth it to halt the good intentions, the helping, the caring, the assuring to make sure the person in crisis needs it, wants it, can handle it, isn’t drowning because she’s attempting to explain why it’s not helping while she’s trying to swim. Sometimes, its unexpected, hard to understand, makes literally no sense from outside. And sometimes, from the outside, we have to swallow everything we know and remember exactly that… we are on the outside. Because, unless we are part of the cancer-friends group- or whatever like-crisis-group, we are on the outside, and we don’t know what’s best for someone else in crisis. It’s just like that. So, good intentions? Ivan Illich said it best. To hell with good intentions. 

feminist praxis and cancer media making

This evening I had the extraordinary opportunity to begin a media workshop with people who have had cancer. It’s my academic supervisors’ research project, where they are working at the intersection of queer/cancer/knowledge/media. People who they have interviewed are coming together to produce digital stories that highlight their experiences as queer people who have had gender cancers (breast/ovarian/uterine/other gyn cancers). The idea is that the collection of artifacts will constitute a digital archive of queer cancer stories. This is the second workshop I’ve participated in as a digital mentor, and it rocks. Each mentor works one on one with a participant to produce their short digital story about some aspect of their cancer/queer experience. I forgot how awesome it is to be in a feminist technology space, where I can solve tech problems and women are at the (media/digital) helm and there are stories being written into existence. Ah! It is so rare. It is so special. Technology spaces are the spaces where I have most experienced misogyny, so to be in a woman & genderqueer space doing media and tech is life-giving. It makes me have excited little butterflies jumping all throughout my blood stream, not just in my belly. It makes me remember why I love media.

Last workshop, I introduced my technology self, my media self, my love of images moving and still. I wasn’t sure if I should add in, “Oh, and I had cancer,” or if I should weave cancer into my introduction so everyone knew, or if that would be weird because it isn’t about my story, its about the participants’ stories. So I didn’t say anything about my cancer, but then I felt like I had to drop little hints because sometimes it felt painfully obvious, and sometimes I wondered if the participants would get annoyed with my cancer-specific contributions because they didn’t know that they came from a body that had had cancer. Eventually I just said it. And then it was easier.

This weekend, there are eight mentors. This weekend, I watched very closely what the other mentor who had had cancer did, waiting to see how they would situate themself, placing myself in part of the circle such that my introduction would be after theirs, and I could copy. They casually wove it into their introduction, and it felt appropriate and good, and so I copied. I thought everyone already knew they had had cancer, and I didn’t think anyone knew about me, so I still felt like it was awkward, but the other mentor had already shared their cancer experience and so that seemed like it meant it would be appropriate to share mine. I mentioned a recent cancer experience and how networked media (this blog!) was a lifeline during treatment. I made reference to a relationship developed through cancer to someone else in the group. And then I breathed a sigh of relief. No one would mistake my short hair as simply, dyke hair because everyone has the information to weave together an understanding of it as chemo hair. It’s just easier.

Tonights’ decision to situate myself as cancer-survivor (for lack of a better word, but I hate that word!) was tricky. On the one hand, I want people in this cancer-media group to know I’m with them, to know I occupy cancerland with them. Yet, I also understand I’m not a participant- I am a mentor, the expertise I bring is technological, it is programmatic, it is based in images and storylines and audio files. I want to break down those dividing boundaries by identifying as having had cancer, but also, I’m so relieved I don’t have to tell my own story, but also, I obviously think telling my own story is important, because I can’t stop making digital stories and blogging about it. I know so deeply that talking about cancer to someone who has has cancer is a world different from talking about cancer to someone who has not had cancer. I don’t want to over-share, and I don’t want to make this about me. I don’t want to seem like I am sharing irrelevant information, even if it seems silly that having had cancer while serving as a media mentor at a cancer workshop would be irrelevant. So it’s complicated. I want to be detached, I want to be up close and personal, I want to guide from a different perspective, I am mired in embodied cancer-knowing. I want to share technology, explore digital images, create playfully, and I want to tread carefully, fully aware of the tender territory and its explosive, scared, surprising, joyful places. It makes me want to skip and leap and hope with possibility.

I think this is what feminist praxis is: it is involving oneself in such a way that disrupts the barrier between researcher and researched, it is fostering a kind of strength in vulnerability, it is being able to support others by sharing one’s own experience. It is honouring knowing, not knowing, different knowing, wanting to know. It is following someone else into a place full of creative colour, shape-shifting memories, and curious revelations, and being a steady hand, a set of eyes that have also stared at death in cancerland, a place of refuge and strength, a reflection and a generative source of ideas and questions. Feminist praxis.

I am really looking forward to what the weekend holds, and should any of the work be made public, I’ll link to it so you can see the awesomeness that is being created. And until then, I’ll just skip and love and storytell and pass the tissues and solve tech problems. Because that’s how we roll over here in queer cancer storytelling feminist media praxis land.