communication

Communication. What a loaded word. We think it means conversations, feedback, truth-telling, pillow talk, peer support. We draw on our mother-tongues and our second languages, our eyes and our bodies and our gestures, our desire to be understood and our tendency to shelter the most tender worries.

Enter cancer, and it gets even more complicated. Did you know that young couples who deal with cancer have a much higher tendency to head toward cancer-induced break-ups? I mean, its no wonder. After all, who prepares young couples to communicate and navigate life challenges? And what kind of challenge have two young people in love ever faced that might parallel cancer? Right, none. I mean, take me and Sammy: we were together for many years- nearly a decade, during which time we built a shit-ton of communication skills, but we still got married and then got cancer. Well, not exactly. We got married and found The Lump within six weeks of each other. Because my path to cancer diagnosis was marred with multiple misdiagnoses (the case for very many young adults) that included assurances of “it’s definitely not cancer” at physical exam, ultrasound, mammogram and biopsy (I should quote the radiologist who said, “I’d fall out of my chair if this was cancer.” I wonder if she fell out of her chair), the time lapse between wedding and cancer diagnosis was sixteen weeks and two days, exactly. But remember, ten weeks and two days of those sixteen weeks were spent wondering why no one was taking us seriously and buffing up on research so as to convince our doctors we needed more investigation, more tests, and more knowledge in the face of what only we thought (at that point) seemed like a misdiagnosis, or at least, one that needed more back-up.

Needless to say, we spent most of the first year of our marriage sifting through breast cancer research, treatment, and side effects. We dealt with chemo and life-or-death decisions on a daily basis. As we wrote wedding thank you notes, we had conversations about Sammy being a widow and about how far we were willing to go to prolong life and about how much ice cream we would eat in the face of a terminal diagnosis. We sorted wedding pictures as the chemotherapy nurse looked on and inquired about bridesmaid color schemes. We picked up my cleaned wedding dress on the way home from my first oncology appointment, and on the ride home we debated the costs of naturopathic treatment.

And we did it all in two languages, in the gray space where Spanish and English slip into each other, in the space where the words tumble together and forget which mother tongue they came from. And we still love each other. So I think we are exceptionally qualified to say a little something about communication. I think our communication skills saved us. I think our two-language vocabularly, our two-language sensibility, our ability to slip between our two languages and to make new words from the best of both languages saved us. I don’t think, though, that you need two languages to survive. I just think we had exceptionally creative language skills because of our two languages. There’s other ways to build exceptionally creative language skills.

You see, when the person you co-habitate with is both the other half of your orange (mi media naranja!) and your better half (mi mejor lado!) there’s two ways to think about who you are. All orange-halves need other orange-halves to be orange-wholes, and what if you don’t want to give the other half credit for being better? What if the other half is in fact, being your worst half at the moment? Then it’s damn good you have the metaphors of another language to draw on! In all seriousness, really. Maybe you’re not so worried about this language and way of thinking about your orange half or your better or worse half, but it’s just an example. Extrapolate. In a much tenser, more radical moment, we’ve got two languages, two sets of metaphors, two cultural reference points.

And of course. Because there are two sets of metaphors, two languages, two cultural reference points, we are used to complete and total misunderstanding. Once, when we were driving over the mountains from Sam’s folks home on the coast of Veracruz to Xalapa, where we lived, I sat in the front seat. Sam’s mother and cousin sat in the back, and Sam drove. The fog was atrocious, the kind that requires you to open your door to make sure you’re driving along the dotted yellow line, but there’s not yellow line dotting the road over the mountains from the coast to Xalapa. And so Sam, driving through the dense, dense, fog, said to me, “Hechame aguas!” as we backed up on the empty road. Now, “Hechame aguas” means “Throw water on me” literally. And so I started looking around for a water bottle and asked why he wanted to be all wet when we had a two hour drive ahead. Clearly, I was totally misunderstanding! “Hechame aguas” was a call for me to help him navigate the road, to be an extra set of eyes, to watch out for him, with him. After some laughter that produced tears and belly-aches, we all realized I had just mistaken “hechame aguas” to mean something it didn’t, and Sammy had assumed I knew how to interpret the cultural reference. That, folks, is pretty much the everyday reality of life with someone who doesn’t share your mother tongue or country of citizenship.

But we learned. We learned to anticipate when references would take on new meaning, we learned to laugh at jokes that lose meaning when translated because we could quickly translate them back and grasp the meaning, we learned to re-explain, re-visit, and to revel in mis/understanding, whether the conversation was about throwing water at the car driver or what to make for dinner or how we wanted to die. I think that approaching each conversation knowing that it could quickly slide down the slippery slope of misunderstanding- and being able to blame mis/understanding on language- has given us the tools to communicate like only other bilingual couples know. These tools foreground, always, and humorously, the real threat of radical misinterpretation. And so we know we must re-explain. We must tell stories. We must use verbs from the other language. We must let our tongues get used to telling in the other language.  We must draw parallels to explain ourselves, and use metaphors grounded in a culture we had never heard of us small children. We are constantly translating, thinking about how words sound in another language, noting how meaning shifts changes, deciding when to shift into English or Spanish or Spanglish. So we learned. We learned to communicate knowing full-well how often we would misinterpret, and we learned to delight in the un/knowing between languages, to find magic in making new words and finding feelings only one language had a word to articulate. We learned to communicate.

And so when cancer came a-knocking, we continued down the same path. We used the same creative assemblage of language and feeling and body movements. We quickly discovered that if the terrain of misunderstanding in our everyday was slippery, then the terrain of cancer was like the side of a grassy, muddy mountain topped with mounds of warm, slippery butter. We knew we were bound to mis/understand.

I think this is key. We knew we would misunderstand.

How often is it, that we pout in the corner or cut of a friendship or cry in the bathroom because we were misunderstood? Misunderstanding, and especially misunderstanding that feigns understanding hurts. Like bad. Real bad. Isn’t that why I recoil at the platitudes people offer in the face of cancer like “Be positive?” “Be positive” grinds at me because it denies my experience that is everything but positive. “Be positive” totally and completely misunderstands what I am feeling. On the other hand, acknowledgement of misunderstanding in the face of total confusion is comforting, quieting. It screams, I cannot understand, and I want to, but I cannot, and these languages we have at our disposal to make understanding possible are as inadequate as the mammogram that read my cancerous lump as naught. That acknowledgement is not insignificant- it’s just the opposite. It’s monumental. It calms me so much to know someone who cannot know is not trying to steal away and warp and re/present oddly, off-handedly my testimony, my experience. Because the key feature of that experience? It’s mine. And I want you to pay heed to that, respect that, handle it carefully. I’d rather misunderstanding than appropriation of my experience touted as “understanding.”

So I urge you to delve into mis/understanding. To stare at the eyeballs of people you love and know that as hard as you stare, as deeply as you sink into their experience, understanding is just a slippery, wet, muddy slope doused in warm butter. It’s impossible to climb up, and so instead we might revel in the slipper slide down. And we can talk about it, and throw words into the air, and grab what we can of the others’ words, and we can use them to ground ourselves for a moment, like grabbing onto tufts of grass peeping out hear and there, but soon enough the roots of those tufts of grass will pull from the muddy ground, and again we will be sliding.

It’s not to say that understanding is hopeless, or that we shouldn’t spend the moments before our eyes close fighting to stay awake and understand our loved ones’ pillow talk. It’s not to say we can’t listen to people different than us, and it’s not to diminish the radical act of witnessing the lives and experiences of those around us. It’s not to say we can’t be jarred out of boredom by stories we’ve never heard before, and it’s not to say we can’t learn to love people who’s lived experiences of the world don’t overlap with our own even a little.

Mostly, it’s to say we can love each other when we don’t understand. It’s to say there’s a certain freedom and a deep (ondo is the word I really wanted to use, because it sounds more like the color of the bottom few inches of the center of a lake, just before you get to the sand) respect in witnessing without trying to stand in the others’ shoes, a respect in standing in your own shoes and knowing you cannot ever stand in someone else’s shoes. It’s to say how cool, to stop trying to understand, and simply start listening. It’s to say, what power in listening, without needing to understand experience by appropriating it, but rather, what power in listening while only listening, while only feeling, while only being and knowing we might be sliding down the slope of mis/understanding.

So that’s what we do, in our own little nudo de amor, when we talk about cancer. I don’t understand what its like to watch your media naranja get cancer, fight chemo, cry because she misses yoga, or use up all the printer ink on breast cancer articles. He doesn’t understand what its like to feel incensed because all the women in my exercise study are two decades older and tell me they’re “young at heart,” and he doesn’t understand what its like to wake up in terror that I forgot to take a medication, or to be so divorced from the brick on my chest I can’t really call it my own (fake) breast. But that is ok, because we got a nudo de amor, and inside of it, we can throw rational understanding to the wind and instead, revel together in the slippery slide of mis/understanding.

Oh, hello, wigs.

I have not worn wigs in weeks. Months. I decided bald felt more like me, it felt more honest, it just felt better, to leave the wigs hanging in my bedroom. I developed fanciful ways of responding to the inevitable comments about my baldness. Sometimes I tell people who ask why I’m bald that I was electrocuted and it burned my hair off my head. I get asked all the time. I told one person who asked I was doing an experiment to see how people responded to bald women in public places and that her (insensitive, uninformed) response would help me with my research.  She said I didn’t have her consent. I said she didn’t have my consent to ask me questions about my bald head. The comments which prompt these responses range from, “So, did you do that to yourself on purpose?” in the line for coffee, to Facebook messages from people I have not talked to in over five years that read “I was wondering if you chose to be bald, and if not, please let me know what’s going on,” to various and very plentiful comments about the supposedly pleasing shape of my head.

Being bald invites cancer comments too, and like the bald comments they vary widely. Yesterday, a doctor (yes, a doctor) said to me, “So what do you think is causing all this young breast cancer, it’s probably caused by excessive caffeine and alcohol.” Don’t worry, I jumped all over him about plastics, toxins, victim-blaming, and misinformed research and he stumbled around when he realized what an ass he was. Someone the other day told me I needed to consume copious amounts of banana and tomato to ward of cancer cells, and an acquaintance recently asked me to recount my stress levels over the last decade to see if there were any links between my stress and my cancer.

That’s barely the tip of the iceberg.

People always act surprised and horrified when I tell them about this, and I’ve started to wonder why. I think we need to get out of the land of make-believe and function in reality, where this happens, multiple times a day, every day. Surprise that someone would ever say some of these things only functions to continue to allow people to refuse to know what it is like living with and after cancer. Surprise is a-political. It keeps things as they are- because how could that happen? Easily, people, easily. We cannot afford to be surprised.

I get at least two or three of these malignant comments every day. Like today, at yoga, a woman changing next to me said, “Are you injured? I noticed you were not using your arm very often.” I shrugged and said, “Nope, I just had a mastectomy.” And she said “Oh, it looks beautiful.” (What the f*ck?!?! What looks beautiful- my breast? Why are you staring at my breasts? The only people allowed to judge how it looks are me, my hubby, and my plastic surgeon- and you are not one of those people. Or are you saying it’s beautiful because you assume I had reconstruction and you can’t tell? Just stop talking already). But no- she went on. “I am a nurse and I didn’t know that was an indication. Is it forever?” By now I’m like dude, I don’t want to discuss my medical history, even if you are a nurse, which makes me think you should know not to ask these questions, so I shrugged and said, annoyed, “Uh, as I said, I just had a very major surgery.” And then I turned on my heal and fitted my wig to my head.

I fitted that wig to my head because I am worn down. I am tired of these comments. I am tired of answering questions. I do not want to discuss this with the grocer and the man on the corner and the colleague teaching the same class as me who constantly asks me if I’m OK. The wigs are a protective barrier. When I wear a wig, people don’t assume cancer -even though I now have a centimeter or so of hair- and even the people who know me and know I’m bald under the wig seem less likely to invade my space with questions and comments and magic cancer-curing powders (yes that happened).

And so I broke out the wigs. I had the long redhead one washed and styled. I’m tired. I’m too tired to rehash this with everyone. I’m too tired to explain to you why your cancer-camp in Costa Rica will not cure me, and I’m too tired to listen to your stories about this person you know who just started chemo or that person who died of cancer or this other person who saw a movie about cancer.

I’m just done. I don’t want to talk to you about cancer, especially not mine, unless you either really get it (read: you had cancer) or you have something really smart and political to say, or you are one of the very elite crew who deals with my cancer on a daily basis and I’ve invited you in already and you’ve seen it all.

I am done being your friendly cancer curiosity. I am tired of explaining away your misinformed ideas. I want my hair to be long enough to look like me. I want to feel like me. I want my hair to be the same strawberry blonde-ish it always has been, not this ashy blond that’s covering my head in soft, dewey hair. I want to feel like me, and even though many people tell me they don’t like the redheaded wig much, it is the one I feel the most like me without cancer in, and right now, I need to feel like me without cancer.

I need to convince the people around me that I’m healthy, and perhaps, if I can convince them, I can trust my body enough to believe that in fact, I am healthy. If I have to wear wigs until my hair is long enough to pass as healthy when I look in my bathroom mirror every morning, I’ll do it. Fine.

Breaking out the wigs. Ready, go. Hurry up, hair.

airport cancer

Did you know it was a thing? Airport cancer, I mean. It’s a thing. I’m in Salt Lake City, on a layover en route to San Diego. And I’ve met a total of three people because of/about/surrounding cancer.

First there was the lady. I parked myself at a restaurant bar and ordered what would turn out to be flavorless pasta and a glass of wine I couldn’t finish. As I flipped through my emails, I felt her hands on my back. You are beautiful. I want you to know you are stunning. Where are you in your treatment? She was in the know. I knew she knew in the visceral way only other people who have/had cancer know. I finished the chemo, and I have a mastectomy in two weeks. She nodded. And again. You are so beautiful. I had breast cancer. I did it all. You are going to be just fine. And then as soon as she appeared she was gone, though I felt her watchful eyes on my back until I finished my dinner, paid my bill, and turned to wave goodbye- and found her seat empty.

The bar was mostly empty. But this youngish white guy rolls in and picks the seat right next to me even though my suitcase that’s really too big to be a carry-on is taking up all the room between the two stools. He maneuvers around it. He makes small talk. He’s from San Diego. He was in Vancouver. We were on the earlier flight together and are on the flight to San Diego together, too. After twenty or so minutes of strangely persistent small-talk twists and turns, he tells me he’s a researcher. Another Ph.D.. One who works on hormone-sensitive cancers. Prostate. Ovarian. Breast. Bingo. Is that why he sat next to me? How strange we ended up sitting next to each other- I have breast cancer. Is it ER+ positive? Is it in your nodes? (It doesn’t feel invasive, this line of questioning, and I feel like I need to say that, because as I write it sounds invasive.) But he knew what he was talking about. You’re going to be fine. No markers in your blood, nothing in your nodes? Best case scenario. He likes my young breast cancer cultural politics research plan. He knows what #bcsm stands for. He’s so clearly in the know. When you’re that in the know, the questions are informative. When you’re that in the know, you know how to cut the bullshit, talk particulars, and be clear and hopeful about the outcome. We talk more. He tells me about a receptor-chemo he is working on for metastatic breast cancer, and about a trial to shut down and eliminate the ER receptors (or something like that). I am so relieved to know this person is working on breast cancer research behind the scenes.

Finally, I board the plane. There were no empty seats, so I am stuck in 22C even though I tried to play the cancer-card and get moved, as I did on the last flight, to an empty row or even better, an empty first class row. And as the last few people fill up the seats, a boy in his late teens approaches. Look, he says, I really want to sit with my girlfriend. Want to move to first class and take my seat? Who are you, I think silently, a lanky, pimply twenty year old with a first class seat? OK, I nod. I’ll do it. Wouldn’t you? The flight attendant moves my suitcase. I move up to the third row. Mr. Tall-Lanky-Pimply-Boy-In-First-Class left a note on the seat. You look like you need this seat more than me. What? This is so weird. But I do. And I have this seat now. So OK. Maybe he knew I had cancer. Maybe the note wasn’t even for me. Maybe it was a random act of kindness I suppose I could ask, but I kind of like it this way, not knowing, magical anonymity.

What is this dreamworld I’m living in? Oh, I forgot, it’s not a dream-world. It’s America (as my friend Ariana always calls the US). So this is what its like to have cancer in America. I didn’t know. This many people would have never spoken to me in Canada, even if I walked around bald. Even in yoga, the many strangers I practice work don’t say a word, even though they watch my eyebrows melt off and see me paint them back on after the grand sweat and stretch.

America. As soon as I cross the border, each and every time, it feels different. The city is irrelevant. Doesn’t matter if I fly into NYC or drive into Bellingham or land in Oakland or pass through Salt Lake City. It’s like a release of breath I didn’t know I was holding. It’s easier. The servings of onion rings are bigger. I can understand the second language around me- and it’s Spanish. More people wear flip flops. No one says sorry in that Canadian twang. It’s home.

But lately I’ve disavowed this place I’ve called home. I’ve announced I never want to return. I’ve proclaimed gratefulness at being treated in the Canadian system. I’ve waxed horror for my American young breast cancer afflicted peers. Tonight makes me think again.

Americans get right up in your face. The old lady put her hand on my back and didn’t take it off. The flight attendant inquired about the surgery date. The guy asked questions I felt I needed to defend for being invasive when they didn’t feel that way (have I become entirely aculturated, Canada?). Americans care in their abrasive way, and while in Canada people stare but stay silent about my baldness, here even a wig invites conversation, comraderie, questions. Certainly, it also invites too much curiousity at times, too much in your face grittiness, too much. But I gotta say, it’s a breath of fresh air, too. Or better articulated, it’s a release of breath I didn’t know I was holding.

I’ve learned lately, over and over and over again, that its always better to do something, say something, respond, try, ask, reach out and f*ck it up wildly than do nothing, retreat, be tentative for fear of f*cking it up. The person to whom you’re offering can always turn you down or simply not respond. That should be absolutely respected each and every time without question- it’s called consent. But that’s why you ASK. That’s why you REACH OUT. That’s why you DO SOMETHING. It’s an invitation, a provocation, a caring, a smile. It doesn’t have to be returned, accepted, responded to. I’d rather throw it all into the universe, shower the people I care about with feeling, and let them decide what threads to weave into our friendship. Better to offer a hundred different yarn colors than only blue or yellow or worse yet, none at all. And yet— that’s just what the tons of people have done. They’ve offered nothing. They’ve retreated, rolling up their ball of yarn and running.

I think it’s classed, cultural. The Canada I know is enmeshed with British reserve. There’s a upper class value haunting privacy. Privacy, keeping to oneself, discussing body-matters, health-matters, relationship-matters in whispered phone conversations and presenting a facade of collected presence- it’s something you perform to show you belong to the middle-upper or upper class. It’s proper. That plays out in Canada, in the vein of British reserve. And as soon as I cross the border to America, there’s a brashness, a willingness to engage, a rawness that can horribly wrong and that can be horribly endearing. I’m the first one, almost always, to tell you effed up the States can be. But man, tonight I was reminded, as I meandered through the very American Salt Lake City airport, that there’s something awesome about Americans, that there’s a reason I let out the held-breath when I arrive here, and a reason that I can identify with a wink of the eye as American. Maybe there is actually reason to be hopeful.

Oh America. You’re so weird.

 

passing

Today, we’re relaxing a la grandiose. We spent the afternoon at the Scandinave, soaking in hot tubs and relaxing in saunas while the sky dumped buckets and buckets of snow on us. It was delightful. Now we’re snuggled in at the Fairmount, and we’re watching the Olympics, and we ordered room service. Oh la la! Tomorrow we’ll be on the slopes.

I’ve been thinking a lot today about passing. Passing as healthy, that is. I went bald at the spa. I soaked in the hot water and the snowflakes fell on my head and melted right away, and my pate was cold. I didn’t pass. That’s why some women wear wigs, but not to the spa. They wear same wig everyday, wigs that look like their hair. Any dumbass should be able to figure out I don’t have hair. I mean, I wear a different wig everyday. And sometimes I wear a purple wig. Come on, dudes. If you can’t put two and two together I probably need to find smarter friends. Kidding. Sort of. Last week, a colleague who doesn’t know (well, I haven’t told her explicitly) that I have cancer saw my wig, different than the wigs I’ve worn on the last two days I’ve bumped into her, and asked, “Is this a performance?” I shrugged. I don’t know what it is. I wear wigs, too, but I today I recognized that act as explicitly not about passing. It’s a lavish, extravagant not-passing. Maybe it’s a performance. I kind of like thinking about it as a performance.

I don’t want to pass. I don’t want to go around telling you, “I have cancer,” but obviously  I’m not healthy, and despite the advice from “Look Good, Feel Better,” which could be more aptly named, “Try to Look Normal, Make Everyone Else Feel Better,” I don’t have an insane desire to fool the world. I don’t care if people wonder. It’s fucked. Maybe if people wonder they’ll do something. My wigs- and this weekend on the slopes, my hats- are an extravagant not-passing.

I mean, sometimes I worry. Like I wore the long platinum wig to the bank, and the teller who goes to my yoga studio asked “how I got my hair like that.” I shrugged. Then I worried if I would have to wear only the long platinum wig to the bank, so she wouldn’t ask more, and I wouldn’t have to provide cancer-explanation about why my hair was blonde, then red, then purple, then short. Then I worried she’d find me out, see me bald at yoga and think I lied to her. And then I stopped for a second to think about if I cared if this girl thought I lied to her? Nope. Besides, I didn’t lie. I just didn’t explain. Explaining, educating, it’s exhausting. Often it leads to me consoling the other person, and hello folks, I’m the one with cancer. So, no, I don’t care. She’ll see me at yoga eventually. Who cares.

I don’t want to pass as something I’m not. It doesn’t seem fair to me, in fact it seems cruel, to ask me to participate in becoming who I’m not. It seems cruel because it denies my reality, it denies the horror and the fear and the madness. Cancer is real. It’s real in young people. My baldness is that realness. My body is invaded. It forces you to think about walking around, healthy, and it forces us all to think about the privilege of health, and to think about plastics and pesticides and health care. It’s brilliantly, horrifically, real. I hope.

So no, I’m not interested in passing.

I’m interested in playing. I’m interested in performance. I’m interested in real.

A (bald & precarious) New Year

Well folks, its 2014. That happened fast. I’ve been thinking about what to write since yesterday, since it seems New Years is somewhat of an obligatory bloggers’ day. It’s a day that marks, in a public way, the beginning of something hopeful, the trashing of the old and tired and useless, the ushering in of glitter and energy and a whole new world….

This year, of course, is markedly different from the other New Years for which I’ve donned oversize plastic glasses and tooted blow-horns and popped off fire crackers. In years past, I’ve resolved to do more yoga, to eat more kale, to sit down to write upon waking, to keep my nails manicured and to juice more regularly. I’m not too into resolutions this year, mostly because it seems like making a resolution is a horrible way to start the year. Really- resolutions are about picking apart the worst part of you and resolving to fix it. And even worse, everyone knows we often fail at this fixing! How about just deciding, oh, to consider ourselves good enough as we are? Care about ourselves as is, without picking apart, without vowing to fix, without identifying that which we hate?

In years past, I’ve gone out late with friends, danced until the wee hours, watched movies and popped popcorn, crafted and listened to live music, saw the ball drop and wandered the streets teeming with party-goers. This year, we wanted quiet. We had soup and salad and organic whiskey sours. My friend A and I talked about boys and hair and organic arugula. Sam watched Edward Scissor Hands and we played footsie with the cats. We ate grapes and talked about New Years wishes a la Mexicana. We took a long walk in the Vancouver mist, and marveled at the Christmas lights decorating the neighborhood.

And, it was precarious. Precarity, in Judith Butlers’ sense of the term, is about the conditions of possibility that threaten and constrain and make im/possible life for particular bodies; conditions which demand that folks can live or die in a moment. The role of the political and social institutions in the world- you know, the bodies that are supposed to care for these people- is then to reduce conditions of precarity such that the assumption that we will go on living feels pretty acceptable, achievable and routine, most of the time.

Of course, it’s more political than that (since we’re talking about JB here) and she writes that “precarity designates that politically induced condition in which certain populations suffer from failing social and economic networks of support and become differentially exposed to injury, violence, and death” (Butler, 2009, ii). OK, so basically those who don’t fit neatly and squarely into racist capitalist sexist heteronormative patriarchy (bell hooks) are systemically less able to access and enjoy the reduction of precarity that the social/political/cultural institutions provide. That makes being outside of the norm- ie, being of color, being queer, not having citizenship, being disabled, etc- a way of being in the world that carries with it a whole lot of risk of being much more exposed to injury, violence, and death. It’s a risk of not being recognized as someone to be protected- a subject of importance and belonging in the system worthy of protection from precarity.

Before breast cancer, I really never experienced precarity—- the systemic risk of being more exposed to injury/violence/death—- in significant ways. Certainly, I watched my dear Sammy struggle with the visa system, and I knew when we crossed borders, that his risk was entirely different than mine: in a moment, his visa could be denied at the border. While I could claim citizenship, and thus, protection, he could not. I could claim citizenship and  protection, and, as a white woman, be indignant about it while any anger on his part could quickly escalate to deportation, revoking of visas, all kinds of horrendous life-altering issues. My claim to rights via citizenship was how I could use those social and political institutions to protect me from risk. Legal as he was and is, there was no such recourse, especially not for an angry man with dark skin. So sure, I’ve made life-moves with Sam given our sometimes precarious decision to build a North American life, but my body has not ever been the one to encounter precarity. Not like this.

The set of discourses, practices, and beliefs that circulate around breast cancer situate me and my cancerous breast in a particular way. The pink ribbon campaign and the feel-good quality of the mastectomy dance viral video episode and the call to eat your greens to avoid cancer are all ways in which a belief system is built such that we could be an almost-cancer-free/delusionally celebrating nation. Problem is, I’m nowhere in that nation. Nothing speaks to me. I cannot claim cancer-free-success because I ate enough leafy greens or cheered the cancer walkers on with pink pom poms. Even worse, I don’t think cancer is inspirational, and I’m pissed off at capitalism and people who let the world come to this. I am outside of that set of feel-good discourses and practices that shape breast cancer all pink and pretty. Medically, too. There’s very little research in women under 35 with breast cancer. We’re outside the structure, as if we didn’t exist. There’s endless studies on older women with ER+ cancer, but in younger women- in women where ER+ cancer is thought to signify another biology entirely next to nothing. There’s all kinds of hemming and hawing about this treatment or that, and on how we might measure the risk and the benefit and the myriad of things that are big, giant, unknowns. In fact, I’m even receiving a treatment- chemo- that ends up helping less than 10% of women. Oh, and also, breast cancer is a life-threatening disease that could kill me. And its precarious as fuck.

So, a precarious New Year. It seems kind of silly to make resolutions at the moment, to pick apart what I hate about me and swear to fix it. I halfheartedly applaud those of you who have committed to a whole new you, or at least a little new you, while I also urge to you to simply accept who and what you are and where you are, now.I urge you to be OK in the now.

Precarity urges me to turn to the only fail-safe solution, which, it seems, is living my life fully, listening to my body, and kissing Sammy every chance I get. Precarity urges me to thinking about fighting bigger battles, and to actually feel the precious million moments that make up my day. Precarity makes me think again about what I want in the world, a re-scrambling of desire and hope and despair. Precarity repaints the world in shades of intensity I didn’t know existed, shades of intensity I associate most closely with bleeding-heart Mexican rancheros.

Today I took my precarious self to yoga. My buzz cut was really starting to go. Every time I ran my fingers over my head, there were short strands falling onto my collarbone and every time I took off my hat, more and more strands on the inside of the hat. Today I practiced behind a woman who used to teach often, and who’s classes I used to frequent. Months ago, I suspected this teacher, J, had breast cancer, or some other cancer. She stopped teaching, and suddenly what seemed to be a totally fantastic version of her hair didn’t seem to sweat when she practiced anymore (was it a wig? why was it so perfect even in yoga?), and there were rumors that she had breast cancer.

Today, her hair was short and curly where it used to be straight and long. I couldn’t help but stare at her, practicing perfectly and, I suspected, as close to healthy as “No Evidence of Disease” after breast cancer can approximate. I was seriously lagging, kneeling in between postures and taking savasana and wondering why the hell I couldn’t feel the fan, but I figured I should stay in class, mostly because this J, who I imagined to be “NED” and doing yoga, was there. If she was sticking it out, I might as well. I was fascinated with the fact that A) I could see no mastectomy sentinel node scars peeping from her yoga top even though my chest looks like a war zone, even in my yoga top and B) she must have been practicing while she was being treated for cancer, if my suspicions were true, because now, clearly, her hair was growing back. If I was right, she did yoga during chemo. Like me.

I would have never said a thing to her, too worried about tip-toeing around the impossible in such a public space, dancing around a shared knowing of terror with someone who I really don’t know beyond the cursory nod at the studio.  She approached me, and told me she heard what was going on, and that she had just been through it all, every single part of it. She could only do this because she’s been in this place of strange I now occupy. What followed was intense connection and conversation, made possible by our mutual sense of precarity. She told me about her hair, and her decision to wear a wig to yoga to avoid the prying questions and curious eyes. She told me about her surgery and her chemo and her radiation. She told me about which nausea drugs she hated and how she kick-boxed through treatment. She told me about how it felt to decide on a mastectomy, and she told me about what it feels like when the friends constantly checking in now get tired in the months to come. Sweaty, tired, at Bikram yoga, she totally got it. She could ask the questions that matter, and listen in a way that knit together the silences and feeling in my eyes. Feeling precarious, and knowing that feeling is shared, lent an intensity in which we hopelessly clung to the moment, unsure when again that could happen, uncertain about futures, knowing only in the moment.

It is impossible to understand a situation one has not embodied, lived, known intimately, though all the empathy in the world makes it a softer, kinder place. But that post-yoga-class connection, for which I am so grateful today, was the embodied, knowing, intimate kind. Sometimes you never know where that will happen, and I urge each of us, myself included, to open these spaces of intimacy and intensity and connection. They are risky: I would have never opened that space with J, but she did, and I’m immensely and endlessly grateful. Her model is my precarious new year.

It’s not a resolution, it’s a model for creating more intensity, for connecting deeper safe spaces, for holding fragility and risk together at once. It’s not something I need to fix about myself, rather, it is a holding of space I know to be real and an acknowledgment of shared precarity, of precious moments. And this world needs way more of that because you know what? I bet if we made a whole lot more spaces like J did today, we’d be a whole lot more prepared to do some serious political battling around issues of precarity.

And then I came home, and rubbed the hair off my head into a giant pile in the bathtub, and Sammy shaved what was left off, and now I am bald, and so we toasted with prosecco.

What a weird way to start the year.

Butler, J. June 8, 2009. Performativity, precarity, and sexual politics. Lecture given at Universidad Complutense de Madrid. Online here.

on telling

I’ve been thinking a lot lately about telling.

Telling people I have cancer.
Saying those words, letting them fall onto others’ ears and into others’ inboxes. How weird it is to say, “I have breast cancer,” how strange those words sound as they roll around in my mouth.

There’s really no way to soften it. No way to tell it easier, to tell slowly, to only tell a little. At some point, you kind of just have to say “i have cancer,” and let what will happen.

Mostly people are insanely nice, so kind, so full of love and worry and concern. You guys offer to take me to lunch and to do whatever I need (though I don’t know what that is right now), and you give me your sleeping pills and say you’ll teach me how to smoke weed (I’ve never been very good at it or liked it very much) and you bring over ice cream and text like crazy and tell me we’ll get through this, and that we’ll just deal with what we have to deal with. The we is really good.

It’s still anxiety producing, though, telling. It breaks the surface chatter, silences the laughter about nothingness, produces black humor about cancer and death.

There’s not much to be done. The only thing I want to be done is for a fairy or a witch or a genie to appear and to make it go away, to wave a magic wand and be shaken awake from this nightmare. (certainly, soon enough there will be actual things I need, actual support people near by can provide, like after my surgery and during chemo). The nightmare feels like being stuck in the dark swimming pool waters of a big pool after the covers have been pulled. Truth be told, I don’t know what that feels like, but I imagine it feels like this. As a child, I used to be so afraid of getting stuck under there. Probably, that was just the fear instilled by endless coaches warning us not to play under the tarps, where it is dark and black and easy to get confused about which way is up, and hard to break the seal between water and tarp, and let air in.

Telling is like admitting someone got stuck under the tarp, we weren’t careful enough when we pulled it over the pool at nights end and there’s a feeling of horror and dread, knowing that someone (could have) gotten under the tarp, stuck there, overnight. That’s how I think it is for the people I tell. I’m the one under the tarp, the one no one wants to be, the one who didn’t kick fast enough or scream loud enough when the tarp was pulled.

I’ve told most people now. College friends. AMIGOS friends. PhD friends. “Home” friends. I only had to tell my Mom, and she told the rest of the family.

Now, those other people. The ones you run into at the grocery store or yoga, who ask, “how are you?” These everyday conversations do not have the capacity to handle “I have cancer.” There’s not enough room. What would you say, to someone who said that to you as you dropped something off at the postal office? Nothing, you can’t. There’s no room. Since there’s no room for “I have cancer,” I have to tell some other version of my reality. Everything else feels like a lie, but mostly, “I’m great, thanks!” feels like a big, giant, charade.

Then there’s the people who I see all the time, and who are in my lives for various reasons. Fellow young academics who wonder why I’m dropping out of the conference panel we were putting together, when I normally organize these things. Others who would never wonder, never imagine something so horrific, like professional contacts and the girl who paints my toenails and the hundreds of AMIGOS youth I’ve mentored over the years. Then there’s the people who will soon know, but who I’d rather not tell- academics at UBC, other students who I see around, yoga teachers who’s classes I frequent, the people in my building. They’ll all know at some point. Cancer is news, cancer is news that spreads. And soon enough, it will be wildly public. My bald head will be a public signifier. But until then, telling is such an odd way to be in relationship to other people, to the world, to myself.