Say Hello, Say Goodbye

I think we’re done, here. How’s that for an ambivalent ending?

I hate endings. I hate saying, “Good bye”.

I am back at work, and my mind has been relentlessly elsewhere than on breast cancer. I had thought that by changing the name of the blog, from “Big Grrls DO Cry” to “Adventures in Deconstruction”, that I could shift the emphasis of the blog from cancer, to the politics of everyday life as a breast cancer survivor. And who knows, I may do that some day. But for now, I think that I need, definitively, to step away from cancer as a site of cultural production and analysis.

I want to thank you, for being here. And I want to encourage anyone who stops by, and wants more info, to please message me, by Commenting. If I know something that might be helpful, I will gladly pass it on. That function has been just one of the joys of maintaining this blog. What can I say? I am compulsively attached to some kind of idea of the Internet as a viral knowledge network that really does make a critical difference to lives where agency is imperiled. And sure as donuts at Tim Hortons, breast cancer and its attendant social/medical institutions, imperil one’s core sense of freedom, identity, value and viability.

If you feel like it, say “Hello”, or say “Goodbye”, by Commenting.

Presence. It’s all we are, and all we have.

 

Mary’s Christmas Queer

I had an amazing Christmas yesterday, and you helped to make it so utterly memorable. It wasn’t about the gifts. Janice and I decided to skip that part of Christmas this year. There wasn’t any overwhelming reason. It wasn’t about anything worthy or principled. We just didn’t feel like piles of presents. What we felt like, was celebration. The very fact that enough psychic space has been cleared in my life so as to permit celebration is attributable directly to the support and overwhelmingly generous love and social connection that so many of you have shared with me. No one knows what to do in the face of cancer. I didn’t have a f*cking clue. And you somehow, against all odds, found the courage and the insight to step into the void, beside me.

So last night, on Christmas, celebrate, we did. Lots of people who I love came to our house for “A Little Christmas Queer”. And please don’t think ‘queer’ is about the sex/gender of who folks cozy up to. It’s just about affirming a principle of kinship that is other than blood ties. And of course, many people who I really wanted to celebrate with DID have family things happening that were good and wonderful, and so couldn’t be celebrating with us last night. So it was far from the whole queer family. But maybe that’s all there ever is anyway — that particular queer family, that night, in that place, and f*ck the idea that there is ever a “whole” anything. What I do know for sure is that there was a lot of love in our house last evening and also, that all my research into how to cook the perfect turkey sure did pay off. Some things should not be an ‘adventure in deconstruction’ and a turkey, perhaps, is one such entity. Although even this claim seems quite suspect.

Yesterday, the bag of breast cancer books that has been a fixture in the living room finally got moved to the back room. It’s almost out the door. I haven’t consulted one of those books for weeks, and the last of the stray volumes that were, up until recently, strewn about the house, was collected up and deposited in the bag.

Loki the super-dog cozied up to everyone, and saved a very special kiss for one of her (many) one-true-loves. Somehow, she manages to find space on the couch for the great dane self, even when there isn’t any. If ever there was a postmodern mathematician with a very post-structural theory of space, it would be Loki.

I started this blog with a story about queer love, a tattoo, and a poster on Ange’s wall that inspired me so many years ago. Last night, P, who knew Ange for many years, brought me that very poster - the very poster of the Deena Metzger photograph that I had spent so many hours staring at on Ange’s wall. After Ange died, P had been guardian of the Metzger poster. P’s generosity in passing on the poster to me is extraordinary. Ange’s poster now sits on my kitchen table, leaning against the wall. I had forgotten that there is a verse of Metzger’s poem on the poster. I was inspired by Metzger’s beauty and courage back then, as I saw it embodied by Ange in her own struggles with cancer. And now, it reanimates my own life. As you do.

Thank you so very much for walking with me, this year, in the most ghastly places that we have had to inhabit. Your courage and kindness have inspired me, and kept me company. I will leave the last word to Metzger.

I am no longer afraid of mirrors where I see the sign of the amazon, the one who shoots arrows.
There was a fine red line across my chest where a knife entered, but now a branch winds about the scar and travels from arm to heart.
Green leaves cover the branch, grapes hang there and a bird appears.
What grows in me now is vital and does not cause me harm. I think the bird is singing.
I have relinquished some of the scars.
I have designed my chest with the care given to an illuminated manuscript.
I am no longer ashamed to make love. Love is a battle I can win. I have the body of a warrior who does not kill or wound.
On the book of my body, I have permanently inscribed a tree.

 

Hallelujah

It was the kind of signature event that tells you, instantly, “You are on holiday!”. I saw a flash of yellow just out of the corner of my left eye. I knew it was my snorkel. By the time I got turned around in the water off Black Rock, on Kaanapali Beach, Maui, the snorkel had flown off my face and disappeared. My first thought was, ‘Hmmm. I assumed it would float.” But it did not float. And the swift current seemed to have taken it away. I had, of course, only worn this snorkel twice. Well, that’s, twice, unless you count the times I tried it out in Vancouver, just to, well, see how it felt, out of the water. And then, with the whole misadventure having lasted only about ten seconds, I spotted the snorkel just as I also spied a man diving down to fetch it. Hidden treasure. Little did he know that I would be waiting when he swam back to the surface, hand outstretched, to reclaim my booty. Would he be disappointed? Sure enough, he reappeared, and I was there, waiting, hand at the ready. I guess he could see that it matched my mask colour. “I would have returned it at the Ocean Activities desk” he proclaimed, before I even had a chance to say, ‘Thanks!”

The sense of sudden but totally manageable danger and misadventure is what alerts you to the fact that you are on Aloha time. Even as I sort of panicked, because it was, after all, a brand new snokel, I also thought to myself, ‘Whatever. I am on holiday. I can buy another one.” The juxtaposition of minor excitement with confident allure is seductive.

Yes. I am finally on holiday. Hallelujah. Go watch KD Lang sing Hallelujah, and think about how unbelievably grateful I am for the chance to relax. Finally. Since April, and the breast cancer diagnosis, Janice and I have not been able to take a single holiday. Well, unless a weekend in Seattle counts. And here we are. It’s sunny. There’s sand everywhere in the condo. And I am full of pineapple. You’d think I was pregnant and dealing with some weird kind of food obsession. I can’t stop eating pineapple. I love pineapple. I think it’s because eating pineapple means that I made it, here. And getting here, well, you know just how hard it’s been.

The other thing that tells you you’re on holiday, is that you overhear people saying really odd, interesting, or truly bizarre things. Like the person in the airport, who asked her companion, “What’s the difference between Arrivals and Departures?”. Now that is probably my all-time favorite question. To arrive at a sufficiently complex response, but that was elegant, would be a lovely challenge. “Why is it windy?” was the funniest thing that I heard someone say today. It’s a great question, likewise, because there is no plausible answer. It sounds like a philosophical question, to me, rather than a meteorological question. And any answer would suffice. That’s what makes it a great question. But perhaps the best thing I heard all day was the woman who said to her beach-buddy, “Well, maybe we can do that tomorrow.” YEAH. What a great attitude. Tomorrow, maybe we can do that thing, that we have been dreaming about forever. For the first time in a very long time, I feel like I could actually expect to do something tomorrow, and that it might actually happen. I knew this post would be kind of trite. No sophisticated thoughts. But who cares. I am full of pineapple, and happy enough to be thinking about tomorrow. Aloha.

 

You Had to be There

Watch the trailer of the classic lesbian movie, Desert Hearts (1985), adapted from Jane Rule’s novel

“Always historicize!” Fredric Jameson insists. And so it is important, in some ineffable way that is nonetheless of significance, that I was there, yesterday, in the South End Hall, on Galiano Island, for the Jane Rule Memorial. The event was singular. That memorial, on that day, in that place. Discourses of mobility and virtuality seem to shift our logic of location, and of being, such that the material seems to vanish into thin air — logos becoming code. And yet, I was there. Time and place coincided in only one set of coordinates.

The hall was cold and damp. It was full to the rafters. Mostly Galiano islanders had come that day to the Hall that hosts so many Island events, to commemorate the life of just one of its celebrated citizens, Jane Vance Rule. In case you don’t know Jane Rule, her writing is very important to many generations of queer folks the world over. Rule’s work opened up a symbolic imaginary for queer readers to see themselves mirrored in the pages of a novel where people lived lives, loved, worked, died and most importantly of all, existed with visibility and passion.

July 12th, islanders had packed the Hall, as they so often do, to participate and celebrate Jane Rule’s receipt of the Order of Canada, presented by the BC Lieutenant Governor, with pipers and Mountie in tow. And on that same day, I was, if you recall, at home, elsewhere, being taken care of by Sz, a friend who lives on Galiano, who had come to hold my hand while the visiting nurse removed the dreaded chest drain tubes. I couldn’t be on Galiano that warm summer day. I was, then, very much in the grip of breast cancer’s ferocious hold on my life.

And so yesterday, I had to be there, on Galiano, an island off the coast of Vancouver, that holds so many extraordinary memories of other times, other days, other lives. The people who rose to speak at the memorial talked not so much about the cultural and social and political significance of Jane Rule’s writing, but about an amazing gift of a life that touched others’ lives to the core. Jane Rule had invited them to live a better life, to reach for human relationships that seemed beyond their grasp, and to love fiercely and proudly. That is worth fighting for. That is why I travelled to Galiano yesterday; because I had to be there. Just being there, on Galiano, was worth fighting for, in much the same way that it is so very important to be there to carry on insisting, as Jane Rule did so very effectively, that a democractic life - a just public - is a public space, and a form of sociality, that values singularity. Your life, in that place, at that time; you had to be there.

 

Abreast in a Boat

Fetishizing community only makes us blind to the ways we might intervene in the enactment of domination and exploitation. I see the practice of critique and in particular a critical relationship to community, as an ethical practice of community, as an important mode of participation. Miranda Joseph, Against the Romance of Community

Whereas I had thought, recently, that being a drag king was a remote possibility, it looks as if PINK is going to be my new Spring colour, and sporting drag queen accessories, like a pink wig, glasses and feather boa is distinctly more likely as a possible reincarnation.

Last night, I attended the Novices meeting of Abreast in a Boat (ABIAB), which is a Dragon Boat paddling organization of, and for, women living with breast cancer. Back in June, in those horrendous pre-mastectomy days (and very long nights) that were awash with tears and chock-ablock with doctors appointments, tests and more tests, I insisted that Janice and Sz take me to the Alcan Dragon Boat Festival. This popular annual Vancouver event attracts many thousands of spectators who crowd the shoreline of False Creek to watch dragon boat paddlers compete. One of the highlights of the event is the race between boats paddled by breast cancer survivors. These paddlers create a moving panorama of courage and compassion on the water as they bring their boats into a special formation after their race, holding carnations high into the air, each one representing a woman who lost her life to breast cancer, and finally, dropping the flowers into the water.

Last June, the very same day that I got the “Mary, you have breast cancer.” call on my cellphone while standing in the Westjet line at the Edmonton airport, I was invited to a potluck where I met M - a fellow breast cancer survivor. When she talked about the dragon boat paddling “for survivors” I experienced such an intense moment of identification with her that it reminded me of when I was really young, and met honest-to-goodness queer folks for the first time. My diagnosis just hours old, I noticed that I was mesmerized by M. I sat beside her throughout the party, and finally screwed up the nerve to ask her for an email address with some really weak and unlikely explanation. I wasn’t even sure what I wanted to ask M. I just needed to make a connection. I was awkward, unsure of what to say, or how to identify myself. What was the secret handshake? My need to create a network that was larger in size than the number 1 was palpable. I knew that I absolutely had to be present for the survivors’ dragon boat race a few weeks down the road, and in particular, for the moment of the carnations.

Watching the ABIAB paddlers race at the Alcan Festival, and then bring together their boats and raise their carnations in memory of the women who lost their lives to breast cancer that year was poignant. The affect was riveting. I made a decision that day, just two weeks prior to my mastectomy, that I would be present on the water the following year. And I was resolute about the fact that next year, unlike that day in June of 2007, I would not be sobbing, and I would not be a spectator.

Abreast in a Boat has an interesting history that represents, in its essential elements, the key features of many breast cancer stories. University of British Columbia Sports Medicine physician and researcher, Dr. Don McKenzie, in 1996, founded a research program designed to challenge then prevalent knowledge and perspectives concerning the impact of upper body exercise and women living with frequently occurring impacts of breast cancer surgery and treatment, like lymphedema (painful swelling of the arms). At that time, it was widely believed that following breast cancer treatment, women should seriously restrict physical activity. Au contraire. McKenzie’s pioneering research showed that a systematic approach to the introduction and maintenance of upper body activity has a positive impact on the health and lives of women living with breast cancer. Just over a decade later, thousands of breast cancer survivors the world over are enthusiastic paddlers dispersed over more than a hundred organizations like ABIAB.

The meeting yesterday was awash in identity narratives profferred as a mode of community building and performativity. ABIAB members told stories about survival, camaraderie, emotional support and the sustenance provided by the company of women. There was, of course, a logic of inclusion and intelligibility that structured these identity organizing narratives. And where there is a grammar of inclusion, there is, of necessity, one of disidentification and estrangement. The stories were also about “being women” or “ladies”, wearing pink with pride, and telling one another stories that “can’t be told to husbands”. I felt the familiar sting of enforced feminization deep inside, and likewise, the alienation from stories about husbands, and other “men in our lives we can’t talk to”. This is, of course, the stuff of community where the logic of “in the singular, plural, and alike”, fails abysmally. How does this group that is predicated on a logic of community practice hospitality to strangers?

I’ll keep you posted.

 

The Politics of Aesthetics

When we ask what the conditions of intelligibility are by which the human emerges, by which the human is recognized, by which some subject becomes the subject of human love, we are asking about conditions of intelligibility composed of norms, of practices, that have become presuppositional, without which we cannot think the human at all. Judith Butler (2001). “Doing Justice to Someone: Sex Reassignment and Allegories of Transsexuality”. GLQ: A Journal of Lesbian and Gay Studies 7 (4): 621-36.

Today I wore boxers. It felt transitively gender appropriate and maybe even, essential, since I was heading off to see the plastic surgeon about chest reconstruction. Recall, that this is the only plastic surgeon in British Columbia who does chest surgery for fTm trans folks AND who does breast reconstruction. This guy, I figured, would get my particularities. But still, I needed the performative insurance boxers might provide. After all, I would need to convince the surgeon that doing chest contouring would be, in my case, an genderqueerly appropriate form of post mastectomy/breast cancer “reconstruction surgery“.

Typically, chest, or “top surgery” is regarded by the medical professionals and the health care system in British Columbia as a form of fTm Sex Reassignment Surgery (SRS). The rules regarding SRS are archaic and extraordinarily discriminatory towards transgendered folks. They include proscriptive requirements, such as, for example, that a candidate for SRS “pass” successfully for a member of the “opposite sex” for a minimum period of two years PRIOR to approval for surgery and that this successful “passing” be observed and recorded by “qualified professionals”. It is also the case that candidates for SRS need to be interviewed and approved for surgery by two mental health professionals.

Step Two, if we are to think of Step One, as the deliberate selection of the Calvin Kleins, involved filling out copious forms. Dr. B wanted to know such a lot about me. There were 8 pages of questions about my sexual and gender identity in relation to temporality, as in, “Who were you when you were born?” (identification via biology), and “Who would you like to become?” (identification via surgery). I was asked to use the space inside of an empty circle to demarcate, with a single dividing line, just how much of ME was f or m at those two critical times - past and future - actual and virtual. All my circles were covered with lines going every which way, tartan-esque, and sported a lively mix of f and m. It was appropriately messy.

Complete these sentences: Gender Identity. I think of myself as a _____. Ideally, I would like to think of myself as a _____.

I experimented with playful answers, as in: How did others perceive your gender identity as a child? Answer: Simplistically. How do others perceive your gender identity now? Answer: Generously.

Step Three was the live interview with Dr. B, who was intelligent, informative and kind. Dr. B is a really stunning example of ethical medical sensibilities. He was emphatic about wanting to use respectful language in asking me about “personal aspects” of my life, and encouraged me to correct him if he went astray. Dr. B didn’t read my answers on the forms. That impressed me. He just chatted away and asked lots of questions. Medical protocol requires doctors to establish that patients seeking any form of SRS actually, seriously want surgery based on what is called, in transgender health discourse, the test of Real Life Experience (RLE). And so the performative criterion becomes, Can I establish that I have a stable and longstanding record of making successful choices in the world that are recognizable and public actions which would pass as Otherly gendered?

I knew that many of the queries were quite important to get right, no matter how casual they may have appeared, like, “Would your ideal gender identity include male genitalia?” If I sounded like I love being a woman “just the way I am,” including all my womanly parts, I would fail the necessary performance of some stable elements of gender dysphoria that would make wanting a male chest something other than totally pathological. Fortunately, “bottom surgery” (as we trannies call it) is a pretty risky biz, so I made some kind of blisteringly ironic statement about preferring a dick I could slam in a drawer to one that might whither away and drop off my body. It seemed persuasive. And I meant well. “Have you told your parents?” This was a tough question, on all kinds of levels, not the least of which is, “What’s to tell?”. Once again, humour was my friend. Most of the time, I was able to assert my stubborn attachment to a transitive relation to gender — a moving project with no fixed address. I insisted on standing in the space of gender queer, and of living a life that is about playful complexity, rather than having ever inhabited something as apparently simple as a tick box on a form.

We moved on to Step Four, because I passed Step Three. OMG. Who was born of this moment - this institutionalized accomplishment of intelligibility?

Dr. B told me enthusiastically that he would not require me to be evaluated by a psychiatrist, because it seemed like I “had a really stable and healthy identity in relation to my complex gender”. And so I learned about the various options for my chest reconstruction, which include several variations, from fixing the problems residual to the bilateral mastectomy, to a full chest contouring operation. I have lots to think about. At the end of today, I was fixated on two thoughts:

If I had been talking about using reconstruction to get a 36DD chest, I would not have been required to disclose whether I felt like I had been born, secretly, as Dolly Parton, and now needed surgery to correct a lack of fit between the inside feeling and the outward appearance.

Maybe everyone should have to read Foucault as a right of passage into adulthood, and yearly thereafter. There might even have to be a test.

I am left with enormous respect for a doctor who has learned so very much about how to care under conditions of institutionalization, uncertainty and risk. I am, also, so very proud that I found within myself the courage to insist on speaking truth to power about a kind of complexity of intelligibility for which there are so very many punishments, sanctions and harsh measures.

 

Quotidian Cancer: Field Notes on the “New Normal”

Forget the literal-mindedness of mastectomy, chemically induced menopause, etc.:
I would warmly encourage anyone interested in the social construction of gender
to find some way of spending half a year or so as a totally bald woman. As a
general principle, I don’t like the idea of “applying” theoretical models to particular
situations or texts—it’s always more interesting when the pressure of application
goes in both directions—but all the same it’s hard not to think of this continuing
experience as, among other things, an adventure in applied deconstruction.

Eve Sedgwick, Tendencies

10 A.M. Driving to Costco. It was an eerie sight. There was both a woman and a dog in the car. They were up front, she in the driver’s seat and the dog in the passenger seat. Their heads were more or less of identical size, orientation and demeanor. Spooky. When I saw them, I thought, “Fcuk. That’s just like cancer. It’s always up front, riding with me. Not me. But beside me. My body double. My constant companion. It’s still here. No one can see me now, separate from it. Cancer.

2 P.M. Walking on the Sea Wall. Since my second opinion consultation in Toronto, I have been wrangling a bad case of blogger’s block. I think I know why. I have my friend Spike to thank for the profound insight. Spike is a stunning blogger who has written brilliant and heartfelt stuff about her experiences with ovarian cancer. We went for a walk on the sea wall. I was so happy for the chance to chat with a friend who has traveled with cancer. There are, I believe, significant similarities across these experiences, and really important aporias (puzzling gaps - I just love this word) of understanding when trying to dialogue with someone who hasn’t “been there”. We didn’t talk a lot about cancer. When we were talking about the challenging time when treatment ends, Spike said something that reverberated deep inside. “People mistake the treatment for the disease, and they interact with you like all traces of the disease are gone when the treatment ends.” Yeah. What she said. I think that I was mistaking the words for the disease, and thinking that if I kept writing this blog, I was keeping the cancer alive. So I changed the blog name, from Big Grrls Do Cry, to Adventures in Deconstruction, which is borrowed from Eve Sedgwick writing about the relationship between academic theory, and experiencing breast cancer. Maybe that will be enough of a talisman to keep me safe, here.

7 P.M. Riverport Movie Theatre. What does it say about my newfound relationship with mortality when the simple act of eating popcorn at the movies feels like laughing in the face of death? They told me, you see, not to eat popcorn. That was the only food that had been singled out as forbidden fruit following my August diagnosis of diverticulitis. But recently, I went to see a gastroenterologist for follow-up tests, and he dismissed any notion that seeds and hard sharp kernals might pierce through the weak sections of the intestinal wall that make up the diverticula. So today, I quenched my thirst for movie theatre popcorn. It’s a ritual I love; sitting in the dark, and reaching compulsively into my bag of popcorn, munching happily in rythem to the sound of the familiar strangers in the crowd. I almost disappeared into the co-present space of bovine, masticative banality. It was brilliant.

 

Re/Construction: How to Queer the Alchemy of Intelligibility

“Gender is always posthuman, always a sewing job which stiches identity into a body bag.” J. Halberstam

Yesterday I went to see one of the surgeons who operates in the local Breast Reconstruction program. Do you remember when my GP told me that she would sign me up for breast reconstruction because I was “in denial” when I declined reconstruction at the time of my bilateral mastectomy? Well sure enough, the surgeon’s office called me because they had a cancellation, and I went to see Dr. N because I thought I should explore all the options available to me. And yes, I have been rethinking this reconstruction business generally, and in particular, my strong resistance to the whole thing.

I learned two things yesterday. First, I am sad to say that I am so shallow, and so marked by cultural norms around fat phobia, that I was thrilled to hear that “you don’t have enough abdominal fat to make breasts”. Having grown up as a tormented fat child, this was my very first adult experience of being told that I wasn’t fat enough! <OMG that is SO sick> But seriously folks, I also knew for sure, feeling absolutely alienated by the various breast implants littering Dr. N’s desk, that I could no more voluntarily submit to attaching breasts to my body than to wear a dress. Not me.

As I have commented upon in previous blog posts, breast reconstruction is narrated entirely un-self-consciously as the reparation of a state of injury to restore a woman to a previously uncompromised state of femininity. There are many normative investments in this line of reasoning, including but not limited to a view of the female body as equivalent to the feminine body, and a view of the female body as being made up, symbolically, of essential parts, such as breasts. On this view, there is a whole which can be radically compromised by the subtraction of specific parts. And so most texts about breast reconstruction take for granted that the stigma of mastectomy will involve an injury to femininity that can be corrected surgically. The degree to which this is a symbolic restoration is underscored by the things that are left out of these accounts, like the fact that using the best of current techniques, breast reconstruction can not repair the nerves that provide sensation to the breast.

However, for me (and many others) the fundamental problem with what I will call, the Restoration Story, is that it incorrectly identifies my gender identification in general, and in particular, the role of breasts in my gender identification. And so a refusal of, or resistance to, “breast reconstruction” is, in fact, often not a desire to refuse a reparation to the damage of surgery, but rather, a refusal of the notion that there ever existed a normative relationship with breasts. How do you reconstruct what was never there? It’s one thing to co-exist with breasts that never felt like they belonged on my body. But how could I ever choose to undergo surgery in order to “restore” what never was — which I could simply define as a state of normative femininity?

I have been thinking about my options. I know that they don’t include the recreation of breasts. However, I also know that I am pretty sure that I don’t want to live out the rest of my life with a chest that is entirely unintelligible as a chest. Or at least, I am drawn to the notion that “body alchemy” involving a potent mix of feminine and masculine identifications creates a kind of “gender trouble” with which I feel a deep and familiar affinity. So now what? Well one of the options that I have been thinking about is the form of body modification that f>m transgendered folks call, Top Surgery. Loren Cameron’s gorgeous book of photographs, including his own self-portraits, document this Body Alchemy as practiced by f>m trans folks, wherein breasts become a chest.

I didn’t feel like I could talk about this with Dr. N, whose desk was covered with an array of breast implants and nice diagrams of busty beaming women. There is a plastic surgeon in town who does most of the f>m top surgeries. I have to wait a year to see him, but maybe I can just hunker down and be patient. It is SO not my best trick, but it may be the only trick in my book. It wouldn’t be something to undergo without a lot of thought, in any case. All very interesting to contemplate. I wonder what our public health plan will say to f>m chest surgery in lieu of breast reconstruction. Or in my case, chest surgery as the only genderqueerly-intelligible form of reconstruction. Think the logic will work with the billing bureaucrats?

 

In Memoriam

Do you feel like you have a doppelganger? I do, and her name is Kathy Acker. For as long as I can recall, I have been fascinated by Acker. Kathy Acker, punk, queer, was an American novelist, taught at various universities, in addition to being an essay writer and porn performer. Like me, Acker sported lots of earrings and was fascinated with tattoos. Like me, Acker was 48 years of age when she was diagnosed with cancer in her right breast in April. Except that for Acker, it was April, 1996. Like me, Acker had a double mastectomy. Unlike me, Acker’s cancer had spread to her lymph nodes, and she declined chemo. About a year after her surgery, she died in an alternative treatment clinic in Tijuana.

Acker was a total French po-mo theory nerd. Acker embodied the radical performative. She wrote some incredible books. Since getting breast cancer, I have been meaning to learn more about Acker - to plumb the depths of my obsessive interest in this amazing woman. What do you know about her? Whatever it is, post it here. I will be eternally grateful.

And of course, if you don’t know anything about Kathy Acker, pretend like you could. I love the license plates in Quebec — “Je me souviens.” I always think that they perfectly represent a performative imperative that says something like, “Pretend that you remember.” In Quebec, you get to pretend that you remember a time when French was a respected and dominant language - mon pays. And so with Kathy Acker, this extraordinary bright light. Je me souviens. There are so many, like her, who must not be forgotten, even if to remember a time when she mattered entails a conjurer’s art.

 

Breast Cancer: New Thinking and New Therapies

I wouldn’t usually suggest that you “Go watch TV!”. But in this instance, Jacqueline, of Rebel1in8 blog fashionista fame, has participated in a really decent newsy documentary about breast cancer. Jac has the best line in the show - “I decided to look at my body as a different kind of architecture” - where she is talking about the decision to create a new line of clothing for a post-mastectomy and non-reconstruction body. Now that, is agency.

 

Shame On Me

Pink is definitely the colour of the month. It’s everywhere. This past weekend included intense bursts of retail therapy, which meant countless encounters with a stunning array of pink products. Pink is contagious. Many good incisive things have been written about what’s wrong with pink marketing strategies, and that’s not what’s on my mind today.

Every time that I walk into the local Safeway, I find myself scanning the pedagogical texts that everywhere litter the walls, windows, and space beside the cash register. The Breast Cancer Awareness campaign posters tell you what you can do to avoid getting breast cancer. Eating 5-10 servings of fruit and vegetables a day is bolded, presumably because that’s something you can do right then and there at Safeway. Spend money, buy a cure, get cancer off your mind right here, right now.

Much to my surprise, in the face of all this pedagogically-motivated reading material, I experience shame. Why, shame? Is it because, in realizing that I am not the intended reader of this material, I feel like I have already failed the test? It’s too late, for me. Which of the ten items on the list did I forget to complete? The text does not address me. It looks right past me. I am outside of the text - marginalia. But all of those are just paranoid readings of the text. It’s actually worse, perhaps. I am the perambulating object lesson, the embodiment of warning - a prognostic signifier for what can go wrong.

Eve Segwick has written some very smart things about shame and breast cancer in A Dialogue on Love, and observes that shame is most intensely experienced at moments where relationality with another is interrupted by estrangement - where the other, or the self as other and non-recognizable, literally seems an unexpected stranger. Shame, she writes, in Touching Feeling, “floods into being as a moment, a disruptive moment, in a circuit of identity-constituting identificatory communication. … In interrupting identification, shame too, makes identity.” (p. 37)

Shame, Sedgwick argues, is a peculiarly queer affective relation. And it is in relation to shame that Sedgwick’s distinction between paranoid and reparative readings is especially helpful. Writing of reparative readings, she suggests that “What we can best learn from such practices are, perhaps, the many ways selves and communities succeed in extracting sustenance from the objects of a culture - even of a culture whose avowed desire has often been not to sustain them. (p. 151)

Today, shame is on my mind. It colours my world, and it suffuses my sense of who I am. Or more to the point, who am I? That I am not quite sure is the genesis of this sense of shame, and the understanding that there is much to be learned here, in this awkward place.

 

Bad Days, Good Folks

I knew when I saw the pink t-shirt in my CIBC Run for the Cure bag that I wouldn’t be running the race. Yesterday was not a good day. My bag of t-shirts, identifying number tags and other race paraphernalia contained an extra t-shirt. A pink t-shirt. A survivor t-shirt. And I couldn’t go there. I couldn’t even look in the bag once I realized what was lurking there. I “earned” that pink t-shirt because I have an embodied relation to breast cancer that is recognized in this particular fashion. I am, in some way, symbolically aligned, now, with the motivational engine that runs the race - that makes the race run. No survivors, no race. And yet, I can not identify with the survivor emblem, nor the survivor discourse. I have written about this before.

It’s surprisingly hard, in this space, to tell a story that is not happy, or that doesn’t contain some generative moment of insight, or victory against ignorance, or fighting back against “the system”. I am very aware that you may not like this story, or that you may think it should have a different ending. Sometimes I think that blog entries should have ratings like movies do. This entry could be rated as, RA (Reading Avoidance advised): Theme or content may be excessively maudlin and introspective. May contain trite observations and narcissistic self-indulgence.

Yesterday was a sad day. It was a day of remembrance, and of mourning. I don’t know how to be a “partner with cancer”. I miss my old body. I miss the carefree relationship to my body that I had before cancer. Sure, it was often an unhealthy relation. As if immortal, I used to smoke, drink to excess, and ingest olive oil as if it were air. Cancer eats through fantasies of the displaced body. Cancer is really not sexy. And cancer makes happy places a lot harder to find and to sustain. I don’t need any extra burdens in the “look on the dark side of life” department, believe me! My life has always been a precarious race against anxiety, and now, I feel like I am dragging some enormous and unwieldy set of bags alongside me that I just can’t shake. I can’t talk my way out of this one.

Lots of good folks contacted me this morning to give me their CIBC Race for the Cure news. Thanks for that! Brandy’s Babes is the team I was registered to run with, and they had a really great time, despite the deluge of rain that blanketed Vancouver yesterday. And I heard from P/J who ran and fund-raised in my name, that they raised serious cash and were like gazelles from start to finish. My buddy S, in Regina, was led through a pre-race warm-up to the tune of “it’s raining men”, which, knowing S, he may have been hoping for. S ran on a 23-person team that raised lots of dough. WAY to GO!!!!

Thousands ran yesterday, and I was not amongst them.

 

What’s to Know?

Today’s newspaper headline was confusing and intriguing, “Don’t bother with breast examinations, cancer group tells women.” The Canadian Cancer Society has revised its policy on breast self-examination, following mounting evidence of the lack of efficacy of this practice. Just think about the hundreds of locations where the pedagogical imperative of this form of self-knowledge has been addressed to you. And likely as not, you have tried to follow its trajectory — the flattened hand firmly following the circular contours of the breast, unceasingly faced with the terrible difficulty of knowing how to think in this particular (dis)embodied relation to the self. What is it important to know, here? How is it supposed to feel? I always felt like I was doing it wrong, and like I couldn’t tell the difference between good and bad lumpiness. And now, research in the field of breast cancer has conclusively shown that sure enough, this was never a very useful way of coming to know the breast, or cancer. So what is worth knowing, here?

“Cancer”, the DCIS Info website tells you, “makes everything you know useless and everything you need to learn hard.” When I saw this, I felt an immediate sense of recognition that connects up with the anxious tenor of my struggles since finding out about my breast cancer in June. Cancer presents unique pedagogical challenges. How shall we think about “learning about” cancer? What’s to know? What would this learning look like? And who needs to learn, here, in this site of extraordinary risk, fear, boredom, shame, sadness, trauma and death?

Of course, there is a world of clinical facts about breast cancer. And it is absolutely the case that for most folks, gaining access to and mastering that knowledge is a very important element in a regime of care of the self. Being informed and knowledgeable can most definitely throw a wrench in the gears that power communicative relations with medical personnel of all stripes. It was, for me, and is for countless others, a really critical part of learning how to live post-diagnosis. However, this aspect of learning - clinical facts about cancer - while invaluable, seems relatively insignificant compared with the learning that is required to cope with the the deeper epistemological and ontological shifting of the very ground of life itself that cancer brings in its wake.

The other day, I hugged a friend who I hadn’t seen since before my mastectomy. Post-mastectomy hugs locate me in a wholly new relation to others’ bodies. My breasts are no longer there, in between, a buffer providing a safe measure of separation and distance in the embrace. She recoiled, visibly, from the intimacy of the exchange, which was, I suppose, too close for comfort. So many quotidian acts forever locate me in a relation of difference, both to myself, and others. How shall I know this new body? What’s to learn about its surfaces and contours? How shall I learn to metabolise the sadness? How to manage the constant reverberations of fear and anxiety?

I am very partial to the analysis of learning, not learning and the vicissitudes of learning that are the focus of Novel Education, by Deborah Britzman. In Britzman’s psychoanalytic account, we encounter “a literary knowing that reaches the recesses of one’s emotional world of learning for the purpose of representing emotional reality to the self and Other.” In this complex and multi-layered account of knowing, there are few pedagogical facts, free association is seldom free, and whereas learning is frequently sustained by the desire to contain anxiety, beginnings are almost always marked by incontinence and regressive desires.

It’s very hard to figure out how to tell people about cancer, and what to tell. That in itself will, at some point, need some good analysis. The overlap with telling and queerness is obvious. People can’t not know, but what can they know, and who can not know – what can they do with what they know, and what does it mean to know. All really crunchy and interesting to me, now.

 

My Second Life… Welcome, Stranger

Like you, I have a Second Life. Do you have a house in your second life? Mine is rather handsome, I must say. The house looks like an old 1930’s manse that you might find on a quiet street in Boston, or Chicago. It’s covered with an ivy that looks like Virginia Creeper and filled with antiques. The old 1940’s Wurlitzer plays contemporary Internet radio stations and I can walk out of the bedroom and look at my ocean view. It’s all part of my other worldly existence in Second Life, which by now, after all the press that Second Life has received in the past year or so, you have likely heard about. As the front-page of their website suggests, “Second Life is an online digital world imagined and created by its residents.”

My SL character is called, Mary Television. You have to choose from a list of pre-made last names when you sign up, which is, free, by the way, and Television seemed, at the time, to suit this particular incarnation. Mary Television was like a woman living in a television set - in a box, inexorably produced and regulated by the codes of virtual visibility and branding. Mary T looks a lot like Mary B. It’s uncanny, actually. It took me a very long time to figure out how to defeat the codes of femininity that regulate and shape every aspect of how Mary T functions - how she sits, walks, moves her body when she walks. And that is not particularly surprising. Queering all of that cultural gender and sexuality coding was, in much the same way, as exhausting and slow as it was, and remains, in my First Life.

Breast cancer temporarily ended my Second Life meanderings. I stopped logging on as soon as the diagnostic wheels started turning in the direction of cancer. Mary Television was suddenly illegible to me as a personage whose viability in the world I could inhabit. I lost the land that I rent in Second Life because I wasn’t there to make the weekly payments. And yes, the money is real My knowledge of breast cancer at that point in my life, Mary B’s life, could not translate into the language spoken by Mary T. She didn’t know what to say to the people who she routinely yaks with in SL. Her SL buddies. How do you tell your online friends that you have breast cancer? On one of my last BC (before breast cancer) visits to SL, I executed a Search for Breast Cancer, under Places, and found nothing. Nothing. There is, it would seem, no breast cancer in Second Life. And this is a place where there is something for everyone.

Now, AC, I find that I have become a stranger to myself. And that is in First Life. I look at myself in the mirror, and I don’t experience a comforting sense of visual continuity. I look back, deliberately, and with intention. I am not sure who she is. She looks different. I look at Mary B the way I used to look at Mary T. Who is she? The continuous after-shocks of recognition horror refract the everyday act of looking through a fun-house mirror.

So, how, then, to greet the stranger?

As Derrida cautions, one must confront, ethically, the mixed-messages that are effected in our “Welcome,” with which we enthusiastically seduce the stranger into our midst, by means of hospitality that is well-intended. The stranger’s welcome is, as he points out, negotiated upon the threshold where thinly concealed hostility lurks within our mechanisms for controlling the stranger’s location. And so it goes. The paradoxes of my everyday worlds. “Welcome!”

 

Women::Queer::Cancer

Catherine Lord, Professor of Studio Art at the University of California, Irvine has written the most extraordinary piece about life, and the queering of cancer. it’s utterly brilliant, langourously evocative, funny as hell, and trenchantly, obdurately insightful. Is it clear that I love love LOVE this work? I am just feeling so incredibly heady about the fact that there are women in the world who are producing work that is so inspirational, and just so damn smart, that it is demanding of me that I live up to its courage in the shape and texture of my own struggles with cancer. Thank you.

Lord, C. The Summer of Her Baldness: A Cancer Improvisation.

Excerpt:
Q: Is hair as unnecessary a protusion as a
dick in most social circumstances? Conversely, is
hair as much fun as a dick in most social circumstances?
Q: If the penis is located between the legs,
and the phallus is located between the ears, where
is a lesbian’s hair when it is not on her head? (I
have kept mine in zip-locked baggies, I confess, in
anticipation of a future I do not yet understand, but
this is a more literal answer than the sort I have in
mind.)
Q: If a straight woman rushes to the wig
store (get ready, get it in advance of the chemo,
have it waiting so that it will be there when you
need it, that’s the word on the street), what should
a lesbian do? Wigs are tight. Wigs itch. Wigs are
about passing. Or are wigs like lipstick? Get over
it, apply the signifiers, hit the road.
Q: How come men OWN not only dicks but
bald? In this year of the fabulous
homeboy/dude/fag—take your pick of race and
sexuality and combine as you will—how does a
dyke lay claim to bald outside her own house?
Only my lover has so far seen my pate.

++++++++++++++++++++++++++++++++++++++

Until you get your hands on the book version, you can read a long excerpt in an academic journal online, as follows:

The Summer of Her Baldness
GLQ: A Journal of Lesbian and Gay Studies - Volume 9, Number 1-2, 2003, pp. 263-305

 

Psychic Incontinence, or, Putting Women::Queer::Cancer on the Map

The very first day that I heard from my doctor that I had breast cancer, I Googled, “Queer Women with Breast Cancer”. I got nothing at all. No hits. You don’t get much with, “Queer Breast Cancer” either. I was surprised. I started this blog, in part, as a way of creating a formidable cluster of links in the sparse chain of significations that coalesce around Women::Queer::Cancer.

There has been a really cool discussion on the Comments page of a previous post, about relationships between being lesbian/straight, and the likelihood of breast reconstruction after mastectomy. What I think is really amazing and interesting in my journey through breast cancer world, is the collection of very brilliant and tough women of all sexualities who are queering cancer, and what it means to survive and thrive. There are lots of queer straight women and you/they are radically improving my quality of life by blogging your/their worlds.

So what does that mean, Women::Queer::Cancer?

Go and listen to S.L. Wisenberg, of the Cancer Bitch blog. Go take a look at Rebel1in8’s Classic Rebel1in8 T-shirt . Go take a spin through the Assertive Cancer Patient’s blog about the One-Breasted Woman Fashion Show. Hang out with Pocketina, at DIY, Not DIE. I could go on…

It’s my current obsession - to queer cancer. Eve Sedgwick, in Tendencies, notes that, “The word ‘queer’ itself means across—it comes from the Indo-European root twerkw, which also yields the German queer (traverse) [and] Latin torquere (to twist)” (xii). Queer typically yields a distinctively modificatory meaning, when inserted in front of a noun or verb, as in, Queer Cancer, that means, to distort, ruin, spoil or otherwise F*CK with cancer.

This is where my psychic incontinence becomes relevant, in case you were wondering about the obscure title of this post. Since my diagnosis, I have been coming undone. I am all over the place. I am, I could say, without being overly dramatic, in the midst of a breakdown. Now before you think you should pick up the phone and save me, I don’t mean that I am unable to cope with the tasks of everyday living. Yes, I have fed and walked the dog today. What I mean is that there is something so primal about the impact of breast cancer generally, and for me, a bilateral mastectomy in particular, that I am experiencing a fragmentation of identity and sense of self and the world. I am radically unsure of everything. I can’t contain my psychic unrest. To survive, then, as I traverse breast cancer, I must twist its conventional meanings and cultural significance. And so I blog. And I join the collective imagination of Women::Queer::Cancer. I spread myself across the world, social networks, the keyboard and the screen and everything in-between and elsewhere. Breast cancer is already something/somewhere/someone else.