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.

 

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

 

Born to Be Alive: Drag King, Tantric Sex, and White T-Shirt Contest

Okay, so for an audio track to listen to while reading this post, go grab this on for size: Patrick Hernandez, the one and only original Disco Queen, and Born to Be Alive crooner. If you are observant, and have laid eyes on me in the last three months, you will notice in the picture above that finally, Mary is BLOND again. YAY!!! Months of AC (after cancer) guilt about carcinogenic hair dye stopped me from reaching for the bottle (of bleach). How dull.

This weekend was my first AC BIG social excursion. Unexpectedly, I found myself at the BOLD conference (Bold Old(er) Lesbians). And I say, “unexpectedly” simply because I have a pretty uneasy relationship with the “lesbian” moniker, let alone “old”. Call it internalized homophoboia if it makes you feel better, with maybe a dash of unresolved misogyny and ageism. I wouldn’t deny any of it. Identification is complex ground. I can live with/in/as queer, or even dyke, but the L word just doesn’t work for me, and never has. At any rate, there I was Friday night listening to a panel of amazing women at a literary reading, and it turns out that one of them, Betsy Warland, read from a recent work that features a primary character living in the altered state that results from a bilateral mastectomy. The “never the same” ontological house of mirrors that breast cancer effects is also the theme of Only This Blue, a long essay-poem by the talented Warland. It’s on my pile of things to read this month, quite close to the top, in fact. The pile is substantial!!!

One of the highlights of the conference for me was a performance by drag king troupe, 3 Dollar Bill. After the show, I was hanging around outside the main ballroom, and someone came up to me and asked me if I was a drag king. I have to say that I was incredibly excited by this instance of mistaken identity. I decided it had to be because of my stunningly flat chest, which looked, perhaps, like a really skillful instance of chest binding. Flush with excitement, I practically flew over to my pal J, from Little Sisters bookstore, who was standing in a crowd that included all the guys from 3 Dollar Bill, and breathlessly relayed the anecdote. J quickly suggested that perhaps I should perform my first drag king act at a social event the group had planned for the Xmas season at the Majestic. The “real” kings decided that maybe, I could give it a whirl, and that they might even offer tutoring. My first homework is to choose “my song”. I was given sternly delivered instructions about how important it would be to pick a song that I could really “fill” — as in, “fill the space”. F*ck!.

Earlier in the evening, while innocently perusing the amazing array of desserts, a conference-goer mistook me for the demonstration gal in the Tantric Sex workshop. I am not sure exactly what kind of energy I was giving off last night, but it was good.

I even had my very own first vision of a post-mastectomy-no-reconstruction-honest-to-goodness-dyke at this wonderful conference (yeah, so, I’m a convert). I did my best not to gape, but I really felt like I can only imagine someone might feel who had gotten very lost in the woods for oh, fifty years, only to emerge and experience their first sighting of a fellow human. I drank in her image. I even screwed up the courage to talk to her and get her card. Good for me. I am not always good at stuff like that. Social multi-tasking is definitely not my strong suit.

In honour of her, I took off my sweater to go and dance. I realized the other day that of-late, I have been carefully adjusting my wardrobe so as to avoid the plain solid colour t-shirt directly worn over flat chest. It is, well, just too bold, even for me. I have been wearing a white t-shirt and then another t-shirt over top of that one. Or I have been wearing a white t and a button-up shirt over that. Got the picture? Well buoyed with excitement about my sighting I decided to toss off the 2nd layer of protective armour - the sweater - and go and dance wearing just my light white t-shirt. I felt practically naked. There was no hiding the fact that my chest is completely flat. And I felt GREAT. It was really liberating. While I was dancing my heart out, I discovered my drag king song — Born to be Alive (the one and only and incomparable Patrick Hernandez). It doesn’t get any queerer.

Yeah. I am. Still Here. Queer. And definitely, Alive.

PS> Oh, and about that BOLD conference. (1) Many thanks to community heroes Pat Hogan and Claire Robson for organizing this cultural extravaganza. This kind of work is SO very important. (2) Bold - Yes, Older - Yum, and Lesbian - double Yum.

 

Black Holes and Time Machines

This past week, of, as you likely noticed, total inactivity on the blog, I revisited a wonderful chunk of land on Galiano Island that I used to call, home. And Janice and I also went to Seattle for two blissful days of immense fun in the BIG city to the south complete with lots of retail therapy, waxing (I will say more, later), power walking, and unrepentant dining in fabulous restaurants. It’s hard to imagine anything more splendid after a July and August from hell, especially as we slide towards the terrain of the unmentionable (school starts anew)!!!

The land on Galiano is very sunny and stretches langourously across a fertile valley with lots of fruit trees and berry bushes. Our host, Sz, provided lots of work-fun chores, like picking apples that had fallen from the trees and needed to be redistributed outside of the deer fencing to feed the local deer population. I also picked copious quantities of blackberries and made a delicious berry-peach sauce for the vanilla ice cream that appeared after dinner one night. All I can say is that nothing tastes better than that fresh berry sauce. Nothing. We hiked, walked by the ocean at Montague Bay, which is stunningly beautiful, read for hours uninterrupted (OMG, I had forgotten just how good that is), didn’t check email or surf, bumped into old Island friends and got updated on the local gossip… Good shit.

I noticed several things about myself over this 7-day period that seem worthy of mention. And it’s all about the BC/AC phenomenon. Yes. That would be, Before Cancer and After Cancer. I am not at all sure that, After Cancer is the right moniker, since in fact, there probably is no after to cancer’s ubiquitous death grip on life, but you know what I mean, here. I just mean, after the tumultous period of active treatment.

So my AC self is unsure of herself on some fundamental level in social situations. Now if you know me, you could say, “Oh come on Mary. That’s nothing new.” Aren’t friends great!!! Yes, I have never been a social butterfly who glides effortlessly around the room blabbing. Ok. I know that. But I am dealing at present with a whole new kind of social malaise that has something to do with the fundamental ontological gap between me and folks who have not lived with cancer. We inhabit different worlds, you and me. And I am not sure how to cross that barrier. Maybe it’s the newness of the trauma. But I do know that I am currently metabolising something that feels like a species of “recognition failure”. That is to say, I am not sure who I am, AC, nor how it is that I would like you to recognize me in this transformed state. There is something fundamentally different and distinctive about life AC that I need you to know about and to acknowledge, and I just don’t yet know how to tell you what it is. Fuck that’s vague. But it’s the best I can do, today. And like I know that it matters that I’m queer, I know that it makes a critical difference that my life has been forever altered by cancer. That I have lost body parts to cancer is just the starting point of a discussion about transformation. And contrary to some others who write about cancer, I don’t choose to frame any of this discussion of change in positive, life-enhancing discourse (cancer, the gift).

The second thing that I have noticed about myself is that I experience sudden, intense, almost random bouts of terror. Susan Sontag, writing about her breast cancer experience, put it like this:

“Panic. Animal terror. I found myself doing very primitive sorts of things, like sleeping with the light on the first couple of months. I was afraid of the dark. You really do feel as though you’re looking into that black hole.” Susan Sontag, Illness as Metaphor

The terror produces a kind of epistemic and locational vertigo. There is no solid ground under my feet and that most solid of cartographic indices, time, is spinning out of control like the needle of a compass under a magnet. My entire relation to time has been altered. I think it may have something to do with the peculiar use of time that prevails in cancer discourse where prognostic indicators and treatment effects are only every reported in Disease Free years and Percentage Survivors after X number of years. If you read much cancer discourse, you assimilate thousands upon thousands of estimates of Cancer Time - how many lived or how many years might you expect to live. It’s very weird. I blogged about this shortly after the mastectomy, in Living in Prognosis. This is the least read entry in this blog, btw, which I think is strange because it is one of the best written, IMHO.

 

the “Good Enough” Friend…

This is a pic of me n Janice yesterday. Janice is the best gf on the planet. It’s that simple, folks. Janice and Stuart took me out to celebrate the removal of the drains. They windsurfed with the incomparable pedagogical assistance of Dr. JB. My friend B came along, and D and B from work were there too. Kewl. We drank beer - I drank a LOT of beer. I even called Sz when we got home and made her talk to me despite the fact that I was quite plastered and incomprehensible.  My friend D told me that my chest was “flat as a board, girlfriend”. And boy howdy is he ever right. It is flat as a board. Which is kind of ok. I wasn’t offended. The afternoon was almost normal. What a concept. I have never aspired to “normal” but yesterday, normal was quite the accomplishment. I love my friends. It’s that simple. Yay you!!!!

So how do friendships survive the exceptional stress of cancer? In the short time that I have been living with cancer, I have been hyper aware of: (a) the difficulty of talking with friends about cancer, (b) negotiating the terrain of friendship, and (c) transforming and recasting the shape and the content of relationships given the requirements imposed by this bizarre, terrifying and intensely weird condition in which I have found myself.

I really like British psychoanalyst DW Winnicott’s construct of the “good enough” mother. The loving caregiver, according to Winnicott, creates a holding space for the child that takes her own inevitable failure into account. The “good enough” mother trusts the child to be able to hold herself together across the necessary space of Otherness that separates them one from the other. And the same could be said of friends.

My encounters with cancer have cast a very bright and somewhat brutal light on my friendships and it is only the relationships that are good enough that will endure here, in this harsh and unforgiving climate. So what is a good enough friend? I think that on the whole, those folks who trust themselves, and me, enough to bear witness to what is happening and who can freely acknowledge their own fears and discomforts around cancer, extreme surgery and the like — those are the relationships that are withstanding this extraordinary time.

The good enough friend knows that s/he can’t take my cancer away, and also that I am going to be afraid, in pain and discomfort, and that I will have to endure a hell of a lot of institutionally defined practices and settings - doctor’s offices, tests, the Cancer Agency and on and on and on — spaces of governmentality to which I have a particularly well honed allergy. S/he knows that s/he can’t step into this situation and make it all better. At the same time, there s/he is, going through the experience with me, laughing about it, asking questions, and basically, not pretending that “all’s well that ends well in the best of all possible worlds”.

I love the folks who phone me up and pepper me with questions because they have been reading about breast cancer, or thinking about something I said the other day about my diagnosis, or they are really afraid about something that they don’t understand and they just want to clear up a misunderstanding. I think it’s awesome when someone volunteers to go with me to something really gross and freaky, like when I had to have radioactive dye injected into one breast and it hurt like hell and I knew it was going to hurt ahead of time so I was unusually freaked out.

When I told one of my neighbours, J, about the cancer, she just cried with me and didn’t say a whole hell of a lot, except that she would bring me meals. We both cried, and then we were laughing about how finally I would be able to get rid of all those bras that I can’t stand to wear, and we were done. For that time, that day.

The good enough friend is tough enough to hear what something is actually like without feeling the need to alter my narrative to fit her own tolerance for pain and discomfort. When s/he asks me how I am doing, s/he wants to know, really, how things are going, knowing full well that they may not be going well at all.

Some people can’t bear to hear the truth and they have really well honed defenses against reality. One of the people I know couldn’t come to visit without bringing her girlfriend along to act as a buffer. Someone else in my social network hasn’t talked to me once since the diagnosis, and will only phone my girlfriend, so that he never has to actually talk to me. Other folks immediately proffer advice as a way of fending off the intrusion of the immediate and the Real.

It’s hard to sustain a good enough friendship under these conditions. It’s going to be a fragile enterprise. There will be system failures, bugs and crashes. Inevitable failure — that is Winnicott’s contribution to our understanding of how to give care. And it is an amazing thing to navigate the seas of life in this storm of incalculable risk and disorientation and to see how incredibly courageous people can be, and how very generous and kind. That’s good enough for me.

 

the Gift

“If there is gift, the given of the gift (that which one gives, that which is given, the gift as given thing or as act of donation) must not come back to the giving (let us not already say to the subject, to the donor). It must not circulate, it must not be exchanged, it must not in any case be exhausted, as a gift, by the process of exchange, by the movement of circulation of the circle in the form of return to the point of departure. If the figure of the circle is essential to economics, the gift must remain aneconomic. Not that it remains foreign to the circle, but it must keep a relation of foreignness to the circle, a relation without relation of familiar foreignness. It is perhaps in this sense that the gift is impossible. Not impossible but the impossible. The very figure of the impossible.” Derrida, Given Time: I. Counterfeit Money

I have been thinking a lot about gifts in the last week, and about Derrida’s recasting of the gift as the “figure of the impossible.”After all, what is my life now, if not impossible? And yet it is paradoxical, right, because in its absolute impossibility there is life itself. There is tension and extraordinary generosity and absolute terror. And much of that has taken the form of a gift, of sorts. I have received many gifts in the short time that has elapsed since my breast cancer diagnosis and mastectomy, and I want to talk about several of those here, today. I want to talk about “the gift” in part because I am an awkward recipient. There’s more work to do there. And I want to think about “giving” because I am so blown away by the huge blanket of love and support and kindness that so many peopled have stitched together around me. It holds me together, your generosity, literally and figuratively.

Let’s take today. Today my drains came out. OMG I hate/d my drains. Two surgical drains came home with me, in me, sticking out of my chest and draping down my body ending in vacuum sealed pouches that needed, daily, to be emptied and the contents measured and classified (by me, here recast as “Junior Scientist”) as to colour and so on. How utterly alien a way to enact the hospital homecoming, already more than half-cyborg. I was terrified the drains would catch on something every time I moved anywhere in the house, let alone outside of the house. Well today, Sz came over from Galiano to hang out with me, including to hold my hand while the home nurse pulled the drains out. And Sz is really squeamish. What an amazing gift - to be there, beside me, while the nurse carefully cut the stitches and pulled out the, oh, about one foot of tubing that was coiled up inside the surgical area. One drain per side. Twice the trouble and twice the fun. And it hurt. Oh yeah. It really hurt.

And then there is the gift of the “drain apron”. Speaking of these dreadful post-surgical drains, my neighbour, J, gave me an apron to carry my drains around “hands free” several days ago when I was ranting on about how hard it was to go anywhere and take the drain apparatus with me. The apron get-up worked really well for the drains because I could slip the ends into the pockets and then I used these cool velcro strips that Janice and Stuart got for me at Home Depot to attach the tubing to the apron ties. Stuart, by the way, came here last week, arriving the day before the surgery, to be a helpful friend. Imagine what that would be like! The gift of presence is, in this time, as always, maybe, of incalculable value. I think it takes courage to show up and hang out for my mastectomy.

My friend B gave me the means to create a safe way to sleep with my drains. B gave me a long bolster pillow for the bed that was incredibly helpful in my creation of what I called, the Chute. The presence of the drains meant that I couldn’t turn even once during sleep. Turning could have got my arms or body all tangled up with the drains, which even if it hadn’t yanked the stitched tubing right out of my chest, would have hurt like hell. So rather than sleep in a recliner, which would have worked, but kept me way too far away from Janice, I created the chute. A pile of pillows kept my body half upright, the the bolster pillow wedged me in on one side. Another blanket wedged in on the other side, and I was locked in for the night. I actually slept for seven nights like this, and stayed on my back all night long. And I slept. Thanks for the gift.

And there is a whole lot more. I will forget to mention something here. Mea culpa. Every day I have received flowers. Yesterday, a huge box came from my favorite organic grocery store that was jammed full of every possible food item that a recovering gal and her home-care buddies could ever hope to stuff into themselves. My work friend SP sent that box over, and even though we have never once done anything remotely domestic, like go grocery shopping together, SP knew excactly what kinds of food that I would most love to eat. And Y knew how to do just that same thing when I was in the hospital. She brought over a whole bag of lovely edibles that I munched on in-between hits of demerol and vicodin. L/L made me a huge casserole of my favorite kind of chili. WOW! My fridge is full.

There are signs everywhere of the impossible - of hope proffered during a time of desperation and fear, of love given freely in the most bleak and desolate landscape I could ever have imagined, of generosity and kindness and honesty and passionate, fierce affection. Likely we don’t need Derrida to help us to make sense of the gift. I am just an unrepentant theory nerd. But I do know that it is critical for me to accept these gifts as they arrive - naked and unadorned. The very figure of the impossible. I live with that. And your gifts are recasting that figure into something that moves, and with which I am so very happy and honoured to be moving. And for that gift, the gift of life itself, I am so terribly grateful.