party in my body

The first time I went to yoga, just shy of three weeks after my mastectomy, I felt like I would never be able to do yoga again.

I thought I would never be able to lift my arms. I thought I would never be able to lay on my belly. I thought I would never be able to swing my arms into twisted up postures or hold my ankle in my hand and kick high above my head. I thought I would never be able to do these things again, ever. Just before the halfway mark of this yoga class I went to, I gave up. I couldn’t do anything. Though I was advised to take six weeks off yoga, I didn’t heed the advice: after all, I did yoga through chemo and I always adapt, or interpret doctor recommendations, anyway, and who likes rules like that?

But. I had not realized how you pretty much use your pec to do everything in yoga, and I couldn’t move my left pec muscle without terribly aching pain. My side ached, my arm hurt, everything was stiff, and I couldn’t do any of the postures. I walked out in tears. Dr. Yoga-Surgeon was there, and when I left she stopped making evil eyes at me for going to yoga before I was “allowed” and followed me out of the studio to reassure me that leaving was the best course of action, and that I would be able to do yoga just as soon as my body had a chance to heal the internal trauma. How kind of her. I half-believed her. I was horribly embarrassed. It sucked.

But now, the glory! Turns out the doc was right about waiting for my body to heal. Now, I can do many of the postures, almost as easily as before. Sure, I still have to modify certain poses because things are still very tight and everything gets very sore very fast, and I can’t lay on my belly, but every time I can do anything, or even part of anything, a gigantic surge of OMG! I CAN DO THIS! runs through my body and it is awesome. I get so excited I cannot stop smiling even though I feel like a total dork with a big old grin on my face in the middle of yoga class for no apparent reason.

It feels like a party in my body.

It happened again today when I forgot my dongle and had to dash from a meeting back to my office. I ran. And it didn’t hurt. And I couldn’t stop smiling and so I started skipping instead. And that didn’t hurt either. And it was awesome. Another party in my body.

I know what it feels like to have millions of my cells systematically killed. I know what it feels like to need to sleep for an entire week from chemo. I know what it feels like to shoot up my belly fat with medicine to make my white blood cells blossom. I know what it feels like to be so exhausted that watching a movie takes too much energy. I know what it feels like to collapse to my knees after five minutes of yoga. I know what it feels like to watch the nurse put on protective clothing to inject me with toxic medicine. I know what it feels like to wonder what, and how, and when to disclose. I know what it feels like to believe the yoga practice that has been a coping mechanism throughout cancer might be gone and impossible forever.

And now, I know what it feels like to get that yoga practice back. I know what it feels like to skip around UBC without aching pain. I know what it feels like to wear a wig with a couple centimeters of hair underneath. Mostly, I know what it feels like to move around this world and discover something new, something glorious, something marvelous, something amazing about my body. The past many weeks have been full of getting to know an unfamiliar body, a body I do not know, a body that feels like it is not mine.

There’s more to be discovered. For now, each time I go to yoga or the gym I learn I can do something new. Last night at yoga, I lifted both my arms over my head for half moon, and it was so amazing I couldn’t stop smiling for the whole class. I’m certain everyone thought I was a lunatic. I still am grinning about it, so delighted with myself. The little things. And the parties in my body, after my body was so devoid of parties for so long.

I have now to discover so much more about my body, the body with a breast I cannot feel, the body that has been battered such that I have had to radically alter my life plans, the body that has marched with me through the halls of the cancer agency, the body that is mine. It’s an odd thing, to have a body that is mine but with whom I don’t totally identify. It’s a slow process, bringing myself back into my body, becoming accustomed to this body. When I look in the mirror, the body I see isn’t the one I expect to see, and the vision of me I hold inside doesn’t map onto the material reflection. I shake my head, trying to clear the confusion and the surgeries and the chemo and the cancer residue and the life fuck-up, but the material reflection of someone I think I am not stares back.

And so for now, I just go to yoga. I relish the good feeling when I run and skip. I delight in being able to reach above my head and swing my arms. Party in my body. It’s what I got right now.

 

 

 

 

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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.

moments

Sammy called me this morning, frantic. The car was missing. Last night, I parked it on the corner. This morning, it was gone. He needed to go to work. How had our one-year old Prius vanished? We had four phone calls in a five minute period. All four were haphazard, fragmented, incomplete. I straddled my bike on the corner of Broadway and Ash, and dialed the impound lot. Sammy called back. I disconnected the impound lot. No car, frantic Sammy on the line. I was the one who used the car last. Where was it?

You know that kind of moment? Frantic, scared, incredulous, the moment when you need the world to stop so you can right everything immediately before you lost your brand new car right when you have a seventeen page to-do list? Cancer is like that, but the moment doesn’t right itself. Instead the world spins in slow-motion while you stand there and get dizzingly sick from chemo, and you are trying to hear but you are too tired, and you are straddling your bike  but you can’t hold on because your hands are swollen as f*ck and tender and blistering, and there is someone offering you three different flavors of a re-hydration drink but you can’t quite reach them, and your pounding heart is seventeen hundred times louder than the very busy intersection. The moment lasts six months.

Then, after being in this moment for six months, you can clip your helmet back on and start peddling, and at least get to the next intersection, where the crossing guard is Dr. Yoga-Surgeon. It will probably be the worst intersection because it is the intersection at which you will volunteer your arm to a nurse who will wiggle a needle into your vein even though you detest needles, and you will wake up hours later after Dr. Yoga-Surgeon amputates a body part that is intimately a part of how you understand your entire way of being in the world. Dr. Yoga-Surgeon will leave that body part in a specimen jar in a drawer at the cancer agency and it will never feel pleasure, it will never go topless in the sunshine, it will never overflow out of a push-up bra, it will never be whistled at by an inappropriate someone, it will never feed a baby, it will never bounce around in a built-in-bra tank top, it will never shimmy in between your shoulders (ok it never did that anyway, but now it really won’t). It will never do those things ever again because it will be in a specimen jar in formaldehyde at the cancer agency and the top of the jar will probably gather dust as it sits in its spot on a shelf with all the other cancerous, amputated breasts who’s owners traveled this particular and harrowing path.

This intersection will be worse, but before you even get there you find yourself weaving through a gauntlet someone called a street. It is a gauntlet. Broken glass pops your tires. You weave through cars and you carry in your backpack a prescription for a medication that will cause false menopause and block all estrogen in your body, all folded up with your list of dissertation references that somehow still has a thousand errors. The medicine will make your bones weak and your belly flabby. You haven’t fallen off your bike in years, but you skin your knees and your chin and your left elbow when you fall off again and again and again and again. Even though all the knobby points of your body are bloodied from the number of times they have scraped asphalt, there’s some really warped cheerleaders silently screaming about positivity, and you could care less because you think they must be dead cheerleaders come back from the worst Halloween you can remember. Their costumes are terrible. The phone rings, and you ride one-handed while listening to your doctors’ secretary explain something that makes no sense. You wonder about gender and why you never realized how much you loved your breasts. You pause on the curb to download medical articles so you can explain to your doctors’ secretary, so she can explain to your doctor, why she makes no sense. The clasp on your helmet clatters to the ground and that’s the loudest sound you hear even though there are trucks blowing carcinogens into a cloud right in front of you. You begin emailing with your cancer-buddy about the media-archive-storytelling-young-cancer-project you need to do more than you need to breathe, and in rapid-fire style you hammer out a goal broader than the sky itself. What kind of activism would it take, you wonder, to throw the trucks that make clouds of carcinogens off the edge of the world? The amputation intersection is a mirage in the distance, and you cannot tell how close or how far the amputation intersection is from where you straddle your bike, you only know that like you desperately need to start your media-archive-storytelling-young-cancer-project, you  desperately need Dr. Yoga-Surgeon’s secretary to change the number of days until the mirage is closer.  It would be ironic, asking her to move the mirage, if you had time to think about what a mirage is. But meaning is lost, vocabulary woefully insufficient, language has never seemed more destitute. The feminists/poststructuralists/queer theorists/critical decolonial thought producers had better get to making up some words with slashes and dashes and lots of letters in between, new words, words we’ve never heard of, sounds that have yet to roll around in our mouths, but probably we will also have to make up a whole new alphabet for this one. Language fails. Metaphor fails. Mirage fails. This is these days between chemo and surgery. The only respite is yoga. The bike isn’t allowed inside the yoga studio, but Dr. Yoga-Surgeon is there, and so you know it’s not a dream.

In case you were wondering, the car was moved, towed to the other side of the street. Thank you, tow-truck, for not towing to the impound lot. I left it too close to the driveway. That worked out a little better than cancer.

 

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.

yoga

Today, I went to yoga. I’ve missed lots lately, because of various procedures, appointments, surgeries. Normally, I go daily, often five or so times a week, though cancer has seriously cut into my hot, sweaty Bikram time.

Yoga. One of my favorite teachers says, always, “Yoga means union. Yoga means unity. Yoga means you.” She is right. Yoga is warm (hot, in fact! It’s Bikram!) and familiar, especially when the snow is falling on Vancouver and I am asked to repeat my name and birthday four hundred million times to four hundred million medical professionals when I walk into a hospital, which is like, everyday. The poses are always the same, my body knows them. I know what is coming and at the same time, I haven’t a clue, but even in the not-knowing how it will go any particular day, yogeando,  as we call it in our house, is the most awesome, mind-clearing, body-feel good, instant-skin-refreshing, experience. I love.

Today, I did something I never do. I left. Before the class was over. It’s totally taboo to leave before the 90 minutes are up. But tonight, my port incision pulsed. I can’t lay on my belly. My lymph node incision really began to ache. I was tired. I felt pulled to writing my diss conclusion, hanging in the balance at home.

And so, after the long halfway break and then the first posture, when everyone flipped to their bellies and it became apparent my seriously marked up chest- two port incisions and a port-bump, a neck biopsy bruise, a lumpectomy scar, a giant blue blotch of dye from the node surgery, and a node removal scar- was not going to have any of the laying-on-the-belly savasana, I decided I’d had enough. I relaxed for a bit, drank the rest of my water, put my rings back on, and tip-toed out.

“Yoga means union. Yoga means unity. Yoga means you.”

Sometimes, yoga means listening to the body, responding. Listening to the scars screaming for cold air, even as the muscles need to stay so badly. Bringing the body back into balance with itself, re-channeling energy and being kind to the broken body parts, the parts marked so barbarically by modern medicine.

Slash/burn/kill. This is cancers’ treatment. Unable to distinguish between good and bad, vibrant and malicious, nurturing and abnormal, the slash/kill/burn approach throws unity, union, you out with the wind because there is not another choice. There is not enough knowledge. There is not a way to distinguish, to pick apart, to know what is good, vibrant, nurturing and what cells will soon morph, becoming bad, malicious, abnormal. Yoga pleads, in contrast, for unity, union, you. For centering in unknowing, for salty sweat in eyes and for locked knees and for yearning for clean, fresh water. For warm spaces, for familiar movement, for favorite teachers. For back stretches, for flexible shoulders, for touching the head to the knee. For imagining a posture is a theorist, and rocking it. For yoga-breathing in the midst of haphazard writing. For a cell phone left in the car, unanswerable. For a deep breath and a comfortable familiarity and a sweet release.

Tonight, I am thankful to have yoga. It’s bring a friend for free month. What Vancouverites want to come with me? Email me!