Good Bye Mama Bear, Fare Well.

In the golden days of summer, I met her. “I’m in with the young ones! They think I’m young,” she cried out as she introduced herself. Only minutes into our meeting at the Callanish retreat, she lifted her t-shirt to show me her two round, perfectly matched nipple-less boobs. She’d been sunbathing topless, she told me, sunbathing until they were the perfect shade of golden. I knew right away, she’d be the type with the flow-y skirts, clothing printed in brilliant colours, and charms hanging from around her neck. She was the only one who, though closer to my mother in age than to me, climbed into the hot tub with Ashley and I to stargaze and imagine, to compare cancer notes and tell stories of oncologists and side effects.

Char wiggled her way right into my heart. Maybe it was the steaming coffee she brewed every morning, just as I was waking up. Maybe it was the sliced fruit she left for Ashley and I as we rushed in the morning. Maybe it was the late nights she stayed with me in the art studio. Maybe it was the advice to always bring my inside voice with me on life adventures. Maybe it was her steady belief in the goodness of the world. Maybe it was her ability to disrupt the age barrier. Maybe it was the peace charm she wore around her neck, the charm she showed me as she told me the story of walking on the beach, hoping for peace, when a plastic peace trinket appeared among the rocks at her feet. Maybe it was the way she mothered me, and everyone else, too. Whatever it was, she climbed into my heart and set up camp. In her, I could see who I wanted to be when I was all grown up (even though we all not know that’s never going to happen!).

It was a hot afternoon and I was feeling exhausted and sad for all cancer has taken, for all the losses, for all the forever changes. She came and sat on the corner of my bed, where I was curled up amid the pillows. She rubbed my back and wiped my tears and told me it was OK I didn’t have babies yet, and she told me she knew I’d be a mama someday. She cuddled into the pillows with me and the sunlight streamed into the bedroom and kept us warm. We talked until the words ran out, and after some silence, we laughed and laughed. We laughed at how she heard me singing in the creek, when I thought no one was listening. We laughed at our mismatched boobs, hers nipple-less and mine full of corners as though someone shoved a book under there. We just laughed. And she mothered.

Char cared. She showed me how to care, how to care in the details and in the fleeting moments. Her presence was warm, full of love and laughter, replete with sass and spice. Goodnight, sweethearts, she called as we climbed into bed, our fingers still stained from playing in the art studio. Good morning, coffee is ready, she called up the stairs, always awake first and taking in the morning light from the porch. She evened out the little duo I formed with Ashley, the third point to our little triangle, the other person to whom I felt most connected. Mama Bear, we called her. Mama Bear, she was. We emailed. Here and there. This and that. Always lots of explanation points, smileys, words laced with sarcasm but somehow also full of warmth.

Once she convinced me to go with her to a Callanish movement and meditation event. I went because she was going, and because my recent surgery banned me from Bikram. It was January, and she was exuberant. She asked me a hundred questions, and listened so carefully to the stories I told her. I shared the most precious of news- news that is not yet public- and she was ecstatic. For me. So sick, so ill, and still her grin reached from ear to ear, and she hugged me hard and close. Mama Bear, indeed.

I found out today. The Art Therapist Who Presides Over Acrylics and Feathers and Sand told me. Better than finding out when the offensive email shows up in my gmail, bearing the saddest of news. Char is gone. She died at home. Breast cancer took her. She was not old enough to die, and we the people of the world, we were not old enough to lose her. The gap is wide, the ache in our hearts, the enormous hole she left in the world that will never be quite the same again. And this afternoon I rode my bike, and the tears fell into the wind, and I missed her, and I wished I’d visited her, and wished she told me, in those emails even just weeks ago, how hard it was getting. I rode and I rode, down to the ocean and along the water, and it was raining.

Char, I promise to take my inside voice, I promise to sing in the creeks, I promise to let the world deliver tiny plastic peace charms just when I need them. I am so sorry Char, I am sorry you left to soon, sorry it hurt, sorry your children will forever miss their mom, sorry we can’t have tea again, sorry it happened, sorry the world continues to spin without you. That spin without you is unimaginable, unthinkable, unbelievable. I’m so sorry. I made you this little video, today when I got home from biking. I changed into sweats and dumped out the coffee beans, and it smelled like you in the mornings, the early mornings, making coffee for us even though you didn’t have to, caring so deeply even when you, too, came to the retreat to be cared for. Your care was so healing. Caring about you too, was so healing. Our friendship was so healing, for me, and I’m so sorry you are gone now, gone forever. This is for you, with so much love, from me. Goodbye, Mama Bear, fare well, friend. I will think of you often. Love you.

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So, A Film.

So Callanish produced a film, about their retreats (one of which was so healing for me) and about six young women who have metastatic/recurrent cancer. Tonight, the film was screened. I went.

The film was beautiful. Shot in golden light. Edited carefully, with profiles of the young women portrayed with sunlight dancing on their cheeks and warm blurred moments and yellow daisies swaying in the wind and rose petals floating in a creek. The images were scrumptious, warm, and bathed in golden light. In many ways, these images reflected my own experience of the Callanish retreat: gorgeous, careful, golden, warm, full of heart.

The women told stories of times their doctors gave them weeks to live, they shared their decisions to get married and travel to India and do insane bike rides in the face of terminal diagnoses. They shared spirit, hope, and fears. They echoed the voices of other young adults I’ve known, and I felt many of their stories and worries and hopes deep inside my core. The film profiled a few of those professionals from Callanish who so beautifully receive spirits and bodies battered by cancer and who, through absolutely tender and amazing caregiving, heal the wounds the oncologists cannot see and awaken the souls of people who have been to hell and back. That part was so well-captured, and I could feel their care leaping out through the screen and enveloping us all. I know their care works, because it worked for me.

You know there’s a but coming though, don’t you? It’s a hesitant but. I don’t want to say anything critical about this wondrous place. I don’t want anyone to hear me utter a single word of not good-enough about these amazing people. But.

I could feel it in my chest, a tightening. I sat in a row of young adult cancer survivors, young people who have fast become close friends. We spent the afternoon together with lunch and lattes. We were stoic. Sometimes a tear escaped. Sometimes we held each others hands. Sometimes we nodded. Mostly we were stoic.

I could feel it in my belly, a stone sinking. This pain was real, but bathed in golden light. I yearned for sharp shadows and the harsh light of midday, for the hard angles of the sun that paint faces in black and white- angles and light that feel like cancer. I expected to see not only the loosening of the cancer knot wrapped around each person profiled- the loosening work so carefully done by Callanish- but also, how the knot was tied, how it was bound, how it left marks that yoga cannot soothe away. I know Callanish retreats are out-of-time, that they are out-of-the-rest-of-life, and I think that’s awesome and necessary. I wondered what it would look like to show the anger, to edit in the frustration, to account for the ongoing struggles around pain, medication, and loss. I know that the Callanish retreats are a sacred space that can expand to hold pain, ongoing struggle, and loss. Maybe Callanish retreats can hold so much pain because they are simply soaking in beauty.

But cancer isn’t all beautiful. It isn’t all retreat. And I think to really illuminate WHY that place must be, it needs to be grounded in what young adult cancer actually looks and feels like: grounded in veins that are totally shot from so many IVs, grounded in the humiliation of hair loss, grounded in feeling like the only one, grounded in a system built for older bodies, grounded in anger and pain and loathing and loneliness. Maybe some people know that, and maybe it doesn’t need to be explained and maybe it’s comforting and amazing for the audience to see the sacred space of healing. But I don’t know that people do know that. I actually think most people don’t know what cancer is like, and so they don’t get why the Callanish retreat space is so critical.

After the film, the six women talked about their experience. First, they introduced themselves and were asked to say a bit about how they are doing, now.

Every single woman smiled and said they were doing fantastically. Everyone used the word fantastic. Everyone. Each time, the feeling in my chest got tighter. My stomach flipped. Fantastic. Fantastic. I’m doing fantastic. I feel fantastic. Fantastic, fantastic, fantastic.

Come on.

But then I wondered what the other option was, sitting in front of a giant audience of people, everyone’s eyes on you. Is there discursive space to say anything after fantastic, after someone else has said fantastic? No one wants to be a killjoy. Fantastic. She’s fantastic. They’re fantastic.

It felt so out of synch with the sacred space for when things are not fantastic.

But really, what else can be said? How do you say, this sucks, to a group so large? How do you fail to respond to the question lobbed at cancer survivor after cancer survivor: “What did you learn?” How can you possibly speak anything but positive, happy cancer?

Do we even have the narrative building blocks to say anything but this story with a hopeful narrative arc, this story that resolves with defying the odds, this story that isn’t angry but is grateful, this story that isn’t crippling but is wings soaring? Isn’t it true, that we draw on the worlds we know to tell stories? Aren’t we just like children playing with building blocks, making castles out of squares and rectangles? What if the children need a lopsided octagon? What if their life feels more like a chartreuse squiggly oval, but they have to settle for a green rectangle instead, because the building blocks only come in rectangles and squares and primary colours?

Such are the building blocks of cancer storytelling. Those brilliant young women who shared their stories in the film got the standard set of building blocks, the same ones we all have: primary colours, shapes that fall easily into brick-like formations: squares, rectangles, and maybe a few long flat things. Maybe an octagon or a diamond. But those are the weirdest ones. Forget it if you want a chartreuse squiggly oval. Just forget it.

They were working with those discursive building blocks. But the restlessness in my legs and the ache in my chest and the knot in my belly, those feelings were chartreuse, squiggly, and oval. Anger has no place in these building blocks. There are not feminist building blocks. There are not queer building blocks. There are not sad building blocks. These are building blocks meant for public consumption. Building blocks palatable to the general public. These building blocks are language itself.

Sure, there can be anger at Callanish, because they’ve tried so beautifully to rid the space of discursive building blocks. You don’t have to talk. You don’t have to say anything. And sometimes cancer takes all the words and shoves them off the side of the cliff, so there’s nothing to say anyway.

But I was dying for someone to be honest. I texted my friend Catherine, hopeful her memoir will soon be ready for me to read, a memoir that she herself told me was too angry, too sad, and too queer for most people to like it. I am dying for her honesty. I am dying for her anger, written across the page. I am dying for her account of breast cancer.

I know these women know. I know the Callanish people know. We’ve talked about it. But what is the choice? How does one tell an impossible story, to a theatre full of waiting faces, a theatre filled with pairs of eyes staring down, expectant for something brilliant to be said? And also- aren’t we responsible to tear apart the happy narrative, don’t we have to change the world?

And then it happened.

Someone said cancer was a blessing.

Cue, my disengagement. I just can’t. “Cancer is a blessing” is probably one of the most popular blocks in the cancer-storytelling block set. It’s like a blue square. Hundreds of them. They are everywhere you turn. When you first get diagnosed, people dump “cancer is a gift” storytelling blocks on you like they are going out of style. If you’re me, you chuck them out the window. But then again, I’ve always like being a little oppositional. My mother says its the red hair. Whatever. But truly. A blessing? Why do we cloak it this way? To make others feel like it’s OK we got cancer so young? To placate? To brush away worry?

We needn’t placate. We need to incite. It isn’t OK. We need a revolution. Stat.

And then it happened again.Someone asked these young women what they could teach “us?”

OK, first of all. Us? Why us? And who is “us?” I knew right away I was not a part of the us. I wondered if this question-asker knew. Us- a discursive move that let everyone know that “us” were everyone else, not the aberration, the healthy people. The five of us, sitting in a row and digging our fingernails into each others’ palms- we were outside the us.

Second of all, really? Teach? People who have cancer are prophetic? Really, that was the question?

No one asked what they lost. No one asked what hurt the most. No one asked about a revolution. No one asked about channelling anger. How could they? There are very few building blocks available to ask these kinds of question. There are even fewer to answer with. And everyone knows it. I don’t think its conscious. I think it’s cultural. Political. How we do cancer. It was a pedagogical evening. Full of teachable moments.

I want to unteach though. I’m over pedagogical. I am angry. I am interested in telling a different story, though I know it’s extraordinarily difficult and in telling another story, we mostly fail out of green squiggly chartreuse ovals, and lean on blue squares. Like, with the song. We’ve tried to tell a story of the everyday, a story of the cancer-ed body, a story of anger and healing braided together. Were we successful in refusing the happy pink ribbon narrative? Sometimes I think so, sometimes not. But I’m proud of our effort. I’m proud of our insistence that we have to tell something else. I know that we told a little squiggly chartreuse oval, even we fell back on blue squares sometimes. Each attempt is imperfect, but necessary.

I think the film (which will soon be available on their website and you all should watch it!) was beautiful, but it was hard. It was not what I expected. My stomach was in knots. And you all know where I go when it gets hard- cultural theory! Feminist critique! Because theory always makes everything better. I feel kind of bad, because The Art Therapist Who Presides Over Acrylics and Feathers and Glitter asked me what I thought, and I didn’t want to burst into tears in the middle of the theatre so I started spouting off about discursive space instead, and how storytelling about cancer is im/possible, and how it’s different when people edit together their own stories- and she reminded me that one of the young women worked with the filmmaker. I didn’t mean to say it wasn’t beautiful or important or totally necessary or critical and real. Those are peoples’ stories and they should be held carefully and tenderly and hopefully. And that is all. Except we also have to be engaged and critical and our theories are inside our bodies, too. How could they not be? Embrained bodies. Embodied brains. It’s both.

So theory makes everything better. Or at least, it makes me feel a little less embodied sometimes, and more embrained, so I can get through the hard moments. Theory makes everything better. But then again, so does The Song. The song is, of course, theoretical. It’s deeply engaged with cultural theory and feminist criticism. It has to be- that’s why I love it so much. It lives in my body. But I need to see the anger painted in broad strokes, I need to know I’m not the only one who is sad, I need to hold up what still hurts and I need it to be witnessed. That is exactly what I have gotten at Callanish, but for some reason, the film as a media event also felt disjointed. Maybe that’s just who I am: maybe I should try to be less critical. Maybe I should just appreciate. Maybe I should be more like those young women, women who have worse cancer than me, if we’re comparing. Maybe I should say I’m fantastic more often. Maybe I should throw more rose petals in the creek. Maybe I should do more yoga (well, that is definitely true, isn’t it?). Maybe I should, maybe I should, maybe I should….

But fuck. I need a damn oval squiggly chartreuse building block. I guess I have to make my own. With the song. My friend Catherine is writing a book I’m pretty sure will fit in with my oval squiggly chartreuse building block, and a book I think will make another attempt at angry, queer, sad, feminist cancer, another attempt to keep my song company. Maybe we’ll fail. Definitely sometimes, we will fail. But maybe sometimes we’ll end up with something approximating an oval squiggly chartreuse building block.

Now why do I feel the need to end this post by saying how grateful I am for the film, by writing how beautiful and brave those young women are, by acknowledging that we all have our own processes and that each one is powerful and important and should be held carefully and loved. What is it, that makes me feel like I need to end on that note? A pull to the other kind of story? I’m ending it here. Time to go listen to my song.

the language we speak

There is something so profoundly powerful about being in a room four other young adults who have had cancer and two women who really get it, and listening. It’s not just us, listening, either. It feels like all the other young adults who have ever sat in that circle, under those skylights, around beautifully prepared food are listening, too. Listening to the rain pounding on the skylights. Listening to the silence, to the quiet on everyone’s lips, to the way we sit together and wait until someone decides to speak. Tonight I went to the young adult group. I hadn’t been in a few months, because I’ve been teaching. But what a relief it was to go tonight.

We shared stories and sorrows and the way cancer is met by utter mis/understanding by… well, by the world. As there always are, there were tears and tissues and times when I think all of us had to sit on our hands to keep ourselves from reaching out and gathering the other in our arms and holding them and whispering in their ears “It’s all going to be ok.”  The thing is, this is a crowd that is way too in touch with what happens when it isn’t OK, way too aware that its not always OK, way too weary of believing in OK when its so consistently not OK, because cancer isn’t OK and how are you supposed trust there is even an OK during, or after cancer? It’s so interesting because I can know and believe and want things to be OK so profoundly for each of those other young adults. At the same time, I can be so completely unable to know that I will be OK, and also so completely aware that someone telling me it will be OK is so entirely useless. Those words fall on my ears like oil poured into a glass of water. They don’t stick. They simple cannot get inside of me, those words. And maybe that’s why the group is so incredible. No one says “its going to be OK.” They just listen. And then we listen back.

I thought I would write about all the things that we laughed about after all the tears had been shed, about the way we all know the stand-out characters that make the Cancer Agency feel like you’ve tumbled down Alice’s hole into a warped Wonderland, and about how we all avoid hand sanitizer because it reeks of the alcohol swabs that were used to clean our ports pre-chemo. But I won’t. Those stories are ours. They are little treasures we can share, treasures that we don’t have to give away. They are common touchstones, ways to identify camraderie in a world in which we feel otherwise so lost, so alone, so without others. I want to hide those stories, hoard them, protect them, save them. I want a whole jar of them to keep to myself and admire, a whole jar full of silly experiences and weird encounters that are common in this tribe. A whole jar of stories that remind me I am not alone, a whole jar of stories that remind me I’m not the only one, a whole jar of stories that remind me there are lots of others who can grasp these feelings, those worries, this knowing.

When I was a young, my childhood bestie and I had our own secret language. We thought it was amazing, and it really kind of was. Rong-e-bong-e-cong-cong-a a-nong-dong Cong-hong-e-long-song-e-yong. But what was really special about it was that it identified us to each other, it gave us a way to make our very own world, it was a special passport to our own little make-believe world that we ong-spoke into reality, into something all our own.

The stories I want to stuff in my jar and tuck away for safe keeping, the anecdotes and smells and experiences of all those weird characters, the way we all know about that one really weird porter on the fifth floor- it is our language. It is our way of connecting, of showing each other we understand, of being not alone, of knitting reality together from the broken shards of what feels impossible, of world-making in this absurd Cancerland. It is a language, just like Ong was. It is a language, and it is ours. It is such a relief to speak this language, and have it recognized. It is such a relief to hear this language, and identify. It is just a relief that we can share this writing into being, together.

Judith, of course, wrote something about this. And it is brilliant. I find such comfort in her words, just as I find such comfort in the discursive practices of tonights’ young adult group, in our language of being, making, and social existence, in hearing others call, in answering that call, in the social definition of being together as young adults with/out cancer, in the recognition of my existence in each of them, and their existence, in me.

And by Judith, I mean JB folks. Judith Butler.

Language sustains the body not by bringing it into being or feeding it in a literal way; rather. it is by being interpellated with the terms of language that a certain social existence of the body first becomes possible. To understand this, one must imagine an impossible scene, that of a body that has not yet been given social definition, a body that is, strictly speaking, not accessible to us, that nevertheless becomes accessible on the occasion of an address, a call, an interpellation that does not “discover” this body, but constitutes it fundamentally…….. Thus, to be addressed is not merely to be recognized for what one already is, but to have the very term conferred by which the recognition of existence becomes possible…” (Butler, 1997, p.5)

Butler, J. 1997. Excitable speech: A politics of the performative. New York, Routeledge.

I thought it was The Onion

When I saw this picture, it felt unreal. It felt surreal. It felt impossible. This picture popped up all over Facebook on the one year

10383718_10152714513382708_868238968349762656_oanniversary of my very first lumpectomy, the lumpectomy that was for a lump that had only a teeny, tiny, itty bitty, percent chance of being cancer. Ha. This picture doesn’t even seem real. It seems like The Onion. Doesn’t it seem just totally impossible? I think the critique of pinktober, of breast cancer pink, of the horrible capitalist monopoly surrounding breast cancer is pretty accessible, totally public, and mostly part of general knowledge. Like you’re a person in the world, you’ve probably heard the critiques. If you haven’t, please start here, and don’t stop reading until you’ve also watched Pink Ribbons Inc. And then commiserate with me about how insanely ridiculous it is for Komen to partner with a freaking FRACKING company. I mean come on, next to pink capitalist crap, fracking is another major issue that’s gotten a ton of publicity lately and that is basically embodies the evil of all capitalist humanity. It is surreal, unreal, unbelievable, impossible.

You know what else is surreal, unreal, unbelievable, and impossible? You know what else belongs on The Onion, not on my body? This fake, no-feeling, rigid excuse they call a fake breast that people herald for it’s perkiness and perfectness. A few weeks ago, some folks from Callanish helped the Art Therapist Who Presides Over Feathers and Sand and Acrylics make me a new breast cast, one that captured this thing on my chest, as it is now. And today I stared at the sculpture that had been sitting behind a dark blue curtain, waiting for me. I looked it straight at it, that replica of my chest in paper machet, and was stunned into total disbelief. Only for a moment, I could recognize my own body as actually having been through cancer. I could only barely believe it for a second. For one second, I could actually believe I had cancer, I could I actually know my body was forever and totally changed. It felt real and impossible, like I was seeing double, like my body was a mirage from the inside out, like I couldn’t fit into myself. They’re connected though, the old breast and the new one. The old breast is off in the land for breasts who died too soon, with all the other mastectomied breasts. But my heart is still pumping blood through the skin. And maybe there’s a connection. Maybe in the mirage, the double vision, the not-fitting, maybe they can talk to each other, be together, become together. Maybe the body accepts and loves the space that once was, the space that kept the cancer inside and away from the rest of my body, the space that sacraficed itself so I could be well. Maybe. It feels weird, but maybe a little less like it could be in The Onion.

And then I went to Blenz Coffee, and they served me a latte in the most awful hot pink cup with a horrible hot pink top and I lost my coffee craving. Another young adult with another kind of cancer recently told me that they felt jealous breast cancer got so much attention. But you know what’s weird about that attention? It’s intensely focused on making my actual breast cancer experience, you know, the experience I had while I had breast cancer, totally invisible. There’s signs all over about a “future without breast cancer,” which is great and all, but the only outcry about fracking funding cancer research is on facebook. It’s so ironic. And then of course, there’s the endless signage about how to avoid breast cancer, passed out on hot pink notecards at the grocery store and hanging around tin cans collecting change at the bank, signage that imagined I am not there. Signage that clearly states instructions for not getting breast cancer: lift weights, eat salad, don’t get wasted every night, stay skinny. Signage that says nothing about fracking. Signage that totally denies my body, denies my experience, denies that I did all those things and still got cancer, denies that I even exist. Signage that speaks to everyone else but those of us afflicted with breast cancer, during breast cancer month. Signage that looks right past me. Signage that makes me invisible. And signage that writes me out of reality, writes some warped version of history without my story, writes a world that has amnesia, a writes a world in which there are fracking drills for breast cancer even though fracking causes breast cancer. And that is why I hate all this pink stuff so much. Sure, it’s political. But it’s also horrendous and so unnerving to walk through the world during a month dedicated to the illness that invaded my body and feel so totally and completely invisible, impossible, and ignored by the “awareness” celebration for the illness that invaded my body. I am both everything and nothing, in relation to the breast cancer awareness month. It’s f*cked.

Breast cancer “awareness” is f*cked. We need a cure: we ALREADY ARE aware. We need people to know what it feels like to be in two bodies, to be disenchanted with the way your body takes shape, to wonder what if. We need people to see double, to feel triple, to move big. Tonight one of my besties A photo-3dropped by on her bike. She peed, and she asked what I had written on the mirror in lipstick. She asked if it said I AM OK. I was taken aback. It was merely a reminder to take my tamoxifen, and I’d scribbled TAMOX on the mirror behind which I keep my face cream and toothpaste. But things are not always as they seem. There’s always a double meaning. Pink ribbons make me- a breast cancer survivor/patient/something- feel invisible. Breasts beneath shirts may be merely plastic ridges filled with saline. TAMOX might actually mean I AM OK. And TAMOX meaning I AM OK might be really hopeful. Can you see it? Can you see how it could mean either TAMOX or I AM OK? Sometimes, nothing is as it seems. That is today, that is tonight, that is Pinktober, that is cancer.The breast isn’t as it seems, the cancer isn’t as it ever seemed, the casts are not as I see them in my mind, the lipstick doesn’t read to her as it does to me. That is today, that is tonight, that is Pinktober, that is cancer. I love that she didn’t see TAMOX. I love that she saw I AM OK.

You know what feels really good, like f*ck you pink everywhere, f*ck you fracking, f*ck you people who write me out of public discourse, f*ck you cancer? The song. Kate’s song. On repeat. Adnauseum. All the time. So that’s why I can’t hear the phone or the doorbell or the FB ping you sent. I’ll give you a free preview. The chorus goes: Cause they took my left tit away/Like they didn’t even give a shit/And I’m on the brink of a fit of rage/Because all I’m surrounded with is breast cancer pink. When the world doesn’t have what’s good enough for us, sometimes we have to make it. Or our friends do. We have to make the music that will heal our souls and tell the stories that no one else is telling. Because clearly, we do exist. Brightly, wildly, we exist.

On Being Read

I’ll begin by saying that I know I’ve written about Callanish often lately, most recently about Kathy’s all-too-soon parting with the earthly world. It’s only because they’ve made such a wild, and surprising difference for me. But tonight, I attended an event marking the turn of seasons, the equinox that happened today at 7:29 pm PST. When I walked into Callanish tonight, I was greeted by the most stunning of bouquets, a bouquet filled with orange and purple and red and deep jewel tones, a bouquet capable of taking my breath away, a bouquet in utter and total stunning beauty. And so went the evening of counsel: beautiful, breath-taking, heart-open, full. People remembered Kathy, and they shared their desire for a hopeful future, and they let us into their complete heartbreak surrounding her death, and they sang songs and trusted and listened and ate cookies.

Urged by J The Wise, the woman at the helm of Callanish, I tried to listen entirely, I tried to hang onto each word, I tried not to think about whether I would talk (no, I had already decided) and I tried to savour each word, each chord, each feeling, each tear, each nervous laughter, each moment of silence, each hand reaching into mine, each line of wisdom shared.

I did speak after all, and more than one person asked me, afterwards, if I was “the Chelsey that wrote the blog.” I was. indeed. How interesting to be told by others how much my tiny little corner of networked media means to them, how profound for so many people to tell me that my brief words about a woman I only knew to be great meant so much to them.

I almost didn’t know what to say. I giggled nervously. I thanked them for reading. It wasn’t until I was on my way out the door that I finally worked up the courage to say how I really felt- When  The Callanish Doc In Residence told me she read/watched again and again, I told the The Callanish Doc In Residence how honoured I was that something I wrote could touch her so much she cried. And it is true. It is so heartening to know that the writing that helped me to process news that shook me to the core- news that came with a sadness that surprised me- could also help someone else, could also be meaningful to someone else, could also touch someone else.

I think it is the quality of listening, the quality of hanging on words and ideas and emotions, the quality of being so present that nothing else exists, that is so precious and hopeful, this quality that draws us together, demands we be together even, in community.

Some people- OK, lots of people- would say this quality of listening is outside of technology, a quality of listening that manifests in circles without cellphones,a quality of listening achieved in community counsel circles with stunning bouquets and iPhones silenced (but still buzzing- I heard them). I beg to differ. As always, I love a good theoretical debate. But tonight, I’ve also got an emotional, embodied experience that makes me shake my head at claim that this quality of listening has something to do with/out technology.

Because you see, you’ve all given it to me. You’ve shown me that in this very digital space, there is a quality of listening to be had that is deep and profound. You’ve shown me I can be heard. You’ve shown me you listen (and I do know how many, many of you read this blog daily, and I am touched. I won’t pretend I don’t check the stats like, always. I love seeing the countries this blog makes it to!) and you’ve shown me you value these words, through your sheer consistency, and tonight, through your words and kind, kind, comments.

I am humbled. Humbled to be read, to be understood with a quality of listening that is rare and deep. Humbled that you read these words, because truth be told, I’m much more articulate in writing than I can ever be between silly laughs and awkward pauses in my speech.

And so I thank you. Thank you for listening. Thank you for continuing to listen. Sometimes I wonder if my “readership” will go down now that I’m cancer-free (or something- Dr. G never calls it that, but she does speak of hoping I’m “cured”) but amazingly,  you continue to read. How grateful I am to you, how generous of you to allow me this space to share what I know and what I wonder and mostly, what I don’t know; how kind of you to read with such attention, to comment with such open hearts, to love wholly and without expectations. How profound to experience a quality of listening so whole, so heartful, so wide that it jumps across the globe. It is amazing to imagine my community, my community reading my posts- and to know that my imagined community is so impactful it consistently, coherently, and relentlessly, in a hundred wild ways, makes material impact on the world.

Tonight, I am humbled. Because you listen with a quality I never anticipated, because this space has come to mean so very much to me, because I am certain I wouldn’t have gotten through the cancer without you reading this blog, because storytelling is part of who we are as humans, because you care, I am humbled.

chipi chipi

When the fog hangs low in the city of Xalapa, Mexico, and when the air is heavy and damp, and when the clouds make the mountain peaks disappear in the distance, this is when my Mexican host mom from so many years ago would call the weather chipi chipi. When someone feels raw, eyes pregnant with tears, heart wide open and the sting sharper than when you scrape your hands on cement, this is when my Mexican host mom from so many years ago would call the mood chipi chipi. 

Today there was sad news, news that matched Vancouver’s chipi chipi weather, news that felt like the cold air and the big, fat rain drops falling onto the sidewalk. Someone who was a bright spot in the world, someone with a heart full of love and care, someone who was most certainly present in the world only a few months ago— that someone isn’t here anymore. Kathy’s gone. She left. Her hands are not chopping onions in the kitchen, she is not mixing pancake batter or planning meals or singing songs in community. She is gone. How oddly final.

The Art Therapist Who Presides Over Feathers and Sand and Acrylics called today, about something else entirely. I knew something was wrong as soon as I picked up the phone. Her voice was heavy and measured and sad, as she shared the news that her dear friend- and the woman that had beautifully, hopefully, awesomely cooked stunning meals for us when we were on retreat this summer, was gone. Kathy was a nutritionist, a cook, a woman who filled plates with green, with heart, with vitamins, with love. She sang with us in the evenings. She gave us apples and coffee filters so we didn’t have to walk to the kitchen for a pre-breakfast snack. She cared deeply, and she poured her love into the food she made at each meal-time, and the magic, the friendship, the love, the hope- you could taste it. She nourished us, she cared for us, she helped us heal.

And she is gone.

I didn’t know this woman well. She explained to me one morning, as she stood beside the bread-toaster at breakfast, why spelt flour is OK even though it has gluten in it, and why it is so different from wheat. She told me about  how she found the whole, diverse ingredients of Mexican food to be so healthy even decades before healthy food was trendy, and we bonded over our shared love of Mexican food. She sliced an apple for an injured mouse I was caring for, and reminded me to make sure the mouse had water, too. She cared.

I know she cared because she made me meals without mushrooms. That’s right. Not because I’m allergic, or because of something serious like that, just because I hate mushrooms. Everyone else had their mushroomy meals, and she made mine, separate, waiting for just me, those enchiladas without mushrooms and that bowl of leftover veggie soup instead of cream of mushroom. It seems insignificant, but it isn’t. Rarely have I felt so cared for, so carefully accounted for, so visible, as when Kathy lovingly prepared me something different, just because I didn’t like “what was for dinner.” I come from a family where what was for dinner was what was for dinner, and there wasn’t a second option. Take it or leave it, but don’t expect to have ice cream if you leave it (sound familiar?). And so imagine the care, the surprise, the relief at being so seen, so visible, so tenderly accounted for- that someone made me food without mushrooms. The first time she gave me a special plate my eyes got wide, and I thought “This is for me? Really?” It was. It was for me, those plates without mushrooms. It was one of the times in my life I felt most cared for. No mushrooms. Not a single one. How kind. How special. How thoughtful. I was so touched, so loved, by Kathy.

And so it feels chipi chipi. My heart aches for her, and I wonder who was taking care of her, I hope someone held her close and gave her fuzzy blankets and made her warm tea, I hope she knew how very loved she was. And I am afraid she was alone, I am afraid she didn’t get to share those last moments with loved ones, I am afraid she didn’t know how loved she was. Maybe she did, and I will hope so. My heart aches for her colleagues, the other facilitators at the retreat who worked with her and loved her, and who have lost a grand friend. My heart aches for her family,  for those closest to her, those with a big giant Kathy-sized hole in their hearts, a hole that will never quite be filled again, a hole who’s edges will always ache, even after they have scarred over and formed a new shape where Cathy was. Chipi chipi because the world feels cruel and harsh and cold, chipi chipi because it doesn’t seem fair or real or believable, chipi chipi because she was so full of life, and knowing that she won’t ever inhabit the world again, move again, love again, laugh again, is so very dissonant that it sounds like two young musicians playing what should be a lovely sound, but instead one is playing B and the other B-flat, and it scorches the ear. It sounds wrong. Chipi chipi, because someone great isn’t here anymore. Someone I didn’t know well is gone now, but she was someone I knew well enough to know we should be remembering, mourning, missing, and again remembering. I knew her well enough to know she was great. Chipi chipi, indeed.

In this afternoon of chipi chipi, I did a few things. I closed my laptop and took a deep breath. I talked on the phone to a good friend. I walked to yoga in the rain. I practiced hard, and hot, and whole, and it felt good. I walked home from yoga in the rain, and I made a chicken and tomato dish for dinner that was topped with piles of fresh herbs and parmesan, and I think Kathy would have approved. And then I made this little stop motion. For you Kathy, because the world is a little more chipi chipi without you.

loving kindness, my tenderhearts: before and after

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

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

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

I literally no longer fit.

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

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

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

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

Maybe.