the body decides

“Sometimes the body decides” a friend said to me in the context of our graduate training, as she switched out of the program we started together and into a different program. Her health just wouldn’t allow her to continue down the Ph.D.. Sometimes, the body decides. There’s something sexy about living “a life of the mind,” a life unimpeded by body troubles. I want it so badly, that life I didn’t realize I had, that life unencumbered by the clumsy, angry, malfunctioning body.

Actually, no. No I don’t I don’t want a life divorced from the body, or a life of the mind without a body. What I want so desperately is a functioning body. A body that works. I body I can live in, a body that I can take on adventures, a body to move through the everyday patterns of life without painstaking care. A body that will allow me to not think and feel cancer, a body that is different from the one I currently inhabit.

The idea that cancer teaches lessons that are productive or moving or inspiring is not an idea I want to cozy up with and talk about. However, there are certain lessons- lessons I never wanted, lessons I never needed, lessons I could have done just fine without- that cancer has dragged me through. And one of them is that sometimes, the body decides. I cannot seem to grasp this lesson, and I notice myself constantly rejecting my body’s truth, wishing my wounds were already healed, always hoping that what is so plainly obvious will vanish when I start to move. This isn’t a lesson I can fully trust right now, and I find myself testing, trying, experimenting often, only to come crashing down into my broken body when my flesh refuses.

It happened when I signed up for the NYC Marathon and decided to start running. I thought I could outwit my newly stitched-in fake boob by running slowly, keeping my torso from moving, wearing a sports bra with a snap. I was painfully wrong, let me tell you. Running is next to impossible when you’ve had this kind of major surgery. Cue, frustration. It happened when I tried to open a can of coconut water the other evening, and realized my nails still don’t have the strength to reach under the metal pull clasp. They are so brittle, so delicate, and so very prone to snapping right off of my finger nail beds if I try anything like opening a can. Cue, anger. It happened when I went to yoga this afternoon, and I left early after realizing the challenge was way more significant than lifting my arms over my head. Cue, meltdown.

Sometimes the body decides.

And so I sit on the couch. I watch movies. I wait. I’ll try again tomorrow. Maybe my body will be more up to what my mind needs. Maybe my body will need it, too. Being blasted into the land of body-first makes me think about embodiment and how centrally the body features in feminist scholarship. Many have argued that caring for the body is itself, political. I have long agreed. And yet, this is entirely different. My body doesn’t match my mind, and my mind is forced to follow my body. I still struggle with this lesson. I may always. I will try movement again tomorrow. But for now, I find comfort in Audre Lourde’s words- words spoken from a body, too inhabited by cancer. She writes….

“Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.” — A Burst of Light: Essays

Tonight seems like a good night, to turn to literature, as we remember Maya Angelous, who just passed. I find comfort in her writing, and especially tonight, this poem:

 

Still I Rise

Maya Angelou, 19282014
You may write me down in history
With your bitter, twisted lies,
You may trod me in the very dirt
But still, like dust, I’ll rise.

Does my sassiness upset you?
Why are you beset with gloom?
‘Cause I walk like I’ve got oil wells
Pumping in my living room.

Just like moons and like suns,
With the certainty of tides,
Just like hopes springing high,
Still I’ll rise.

Did you want to see me broken?
Bowed head and lowered eyes?
Shoulders falling down like teardrops,
Weakened by my soulful cries?

Does my haughtiness offend you?
Don’t you take it awful hard
‘Cause I laugh like I’ve got gold mines
Diggin’ in my own backyard.

You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness,
But still, like air, I’ll rise.

Does my sexiness upset you?
Does it come as a surprise
That I dance like I’ve got diamonds
At the meeting of my thighs?

Out of the huts of history’s shame
I rise
Up from a past that’s rooted in pain
I rise
I’m a black ocean, leaping and wide,
Welling and swelling I bear in the tide.

Leaving behind nights of terror and fear
I rise
Into a daybreak that’s wondrously clear
I rise
Bringing the gifts that my ancestors gave,
I am the dream and the hope of the slave.
I rise
I rise
I rise.
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a letter from my left breast

Dear Body,

I miss you. It’s been interesting being here on the other side, without you, Body. But I found the area for the breasts that had cancer in them, and we’re all here without our Bodies, and so that makes it a little more bearable. We’re together.

I’m not the new kid on the block anymore. Today, your cancerbuddy H’s right breast came to the other side. I was very excited to see her, and to show her all around. I introduced her to the breasts that comforted me when I first got here, and I showed her the best spot for sunbathing. Tomorrow we’re going to go floating in the ocean with the other young breasts who love to swim and I’m going to tell her silly jokes to make her laugh. All the other breasts are here, too, and I’m going to introduce her to everyone.

I know you think it’s make-believe, sometimes, dear Body. But there’s nothing not real about it. Telling stories is at the core of who we are as humans. We make sense of the world by telling stories, and by imagining our selves as characters in stories that are related to other people in the world. It’s where everything comes from. We teach each other about the world by learning about how others were, what they did, how they are. And so we participate in the stories, the making of identity and the knitting of community, and we teach those around us as we do. The stories become who we are.

The story about how the breasts who get mastectomy’d all go to a place where all the other breasts who got mastectomy’d went is part of your story, Body. It’s a story you share with lots of Bodies before you and lots of Bodies after you. I’m your breast in this story, dear Body, and the story goes like this: We are here together, me and the other breasts, and we are waiting for you bodies to finish living on earth. We’re not alone here, we’re all together. Just like you. You and all the other women who are tied to this place, because they’re breasts are here sunbathing with me. Each time you tell the story, Body, your words weave together new realities over here on the other side, where I can find warm embraces and intellectual stimulation and afternoon sunshine because you imagined it as such. Can you believe there’s all that on the other side for breasts who died too soon? Ah, the power of the imagination.

Remember, Body, when those young people we worked with in Nicaragua always asked why you believe in magic? This is magic, Body. Storytelling is magic. It holds us all together. The only way to make sense of such horrific knowledge as cancer forces on us is by telling stories, by making them up, by allowing words to coalesce until there is some way to imagine a little bit of glitter, a hand to grab onto for support, a deep warm embrace.

Maybe, Body, it’s time to make up a story for that hard, uncomfortable expander that’s holding space between your chest wall and your skin. It might be time to stop hating that piece of plastic, and come up with a story about how the plastic is gently and carefully holding the physical space in my memory. Maybe if you send that plastic warmth and believe that it’s not your enemy and imagine it as holding open my space for a little while, it will stop screaming so much every time you run. Maybe if you can get on the same team with the expander, then it will let you lift your arm over your head so you can go to yoga, Body. I know how much you need to go to yoga.

The thing is, that plastic is going to be there for a while. Three months, maybe six. You are so tired now, Body, and healing is harder this time. It might be easier to give up the fight, loosen the muscles, accept what is. Acceptance is never easy, I know. But the thing I’ve learned from the other breasts, over here on the other side, is that our capacity to resist is finite. Eventually, acceptance comes, and its easier if we can let go gently.

Know that I’m here, Body. I’m you’re Left Breast and I’ll always be your Left Breast. We’ve went through so much together, and I’m grateful. Remember the time I got bitten by a spider in Nicaragua and it oozed everywhere, and you called the wound your “triple nipple?” Remember the first time someone else touched me? Remember the time I starred in the totally not scandalous naked movie project you convinced your college buddies to make? There were so many good times, weren’t there, Body? So much to remember.

But I’ve got my spot now, and its on the other side. Don’t you worry, I’ve got lots of love here. I have friends and mentors and colleagues and tanning buddies. They’re taking good care of me, and I’m taking good care of them. Holding my spot open doesn’t mean replacing me, or pretending I wasn’t there. Holding my spot open might mean sometimes, you can pretend I’m there and that this whole cancer catastrophe never happened. I know that seems impossible right now, but some people say that’s the story you’ll tell next. Holding my spot open might mean that when you come over here to the other side, too, Body, I can slip right in so easily. Holding my spot open might mean that you can always touch the space where I was, and that you can always know that much of me will always miss you, Body.

It’s just a thought, Body. Maybe you need to fight the expander a little longer. Maybe you need to keep railing against it, reciting your hatred for it, noticing ever ache and pain it causes. But sometime soon, that will all come to a close. You can remember me and make peace with the hard as rock expander holding my spot open. But whatever you do, know I’m over here on the other side, and I’m OK.

It’s time for me to go now. I need to find your cancerbuddy H’s Right Breast, because she’s new here. She’ll find her family here, eventually, too, just like I found mine. I have a big old lovely family here, and they’re taking good care of me. Now you go, and take care of that space where I used to be. I’ll be here, Body, thinking of you, cheering you on from the other side.

Xoxoxoxo,

Your Left Breast

 

being a bad ass won’t save me or you from cancer

When it comes up, the rage follows shortly. The rage doesn’t ever map onto what the other person meant to say, do or explain. They always mean it as a compliment. It’s meant to make me feel good about myself, meant to encourage me to continue. In fact, though, it does just the opposite.

I’m talking about the idea that being a bad-ass will change the course of cancer treatment. It’s generally understood, in the circles I hang out with, that the happy-happy pink-pink culture that pervades all things breast cancer is politically f*cked. Yet, many of these astute folks who can clearly dismantle pink culture pick up a new set of words to replace hopeful pink positivity. Instead, they call me a “fighter,” they say I’m “tough,” they label me a “bad-ass.” Indeed, I am all those things, thankyouverymuch. But being those things has nothing to do with how my body responds to cancer treatment.

Every time that I’m told I’m a “bad-ass” for “beating” cancer, the fear of recurrence that lives inside my belly blazes brighter. I don’t want anyone to know I’m not a bad-ass, and I want to always be one, and since being a bad-ass is linked to my “beating” cancer, each time I hear it I become more afraid of a recurrence. What will I be if I have a recurrence? I wish instead that I could simply know you’d still be there. I wish instead we could stop talking about this as though it were a battle. It only terrifies me more. It only rips away the shred of security I had in our friendship. It only leaves me wondering who I could possibly lean on if what I am most terrified of happens. It only makes my eyes pool with tears.

Every time I hear it, I want to punch someone, I want to smash plates on the sidewalk, I want to scream so loud a window shatters. It makes my heart ache for the friends I’ve made. What if they die? My worries that my cancerbuddies won’t always be at my side in this journey out of cancerland can’t be calmed when you tell me they are fighters, bad-asses, full of strength. In fact, just the opposite happens. The worry is fanned, and it grows bigger, eating up the oxygen and taking more space than I ever wanted it to have.

Every time I hear it, my heart starts to beat a little faster. The color creeps into my cheeks. My fists ball. I become unable to make an argument that is coherent. “But it must be related, at least a little, you say. It must be. You must be able to control some amount of your treatment by being awesome.” It’s so well-intentioned. I understand we all wish we could wish ourselves out of this situation. But every time I hear it, the carefully constructed stories I’ve stacked up all around me about cancer and community and health and the future come crashing down together, clanging into a pile of scraps I must painstakingly right yet again.

Now, being a bad-ass may help to deal with the emotional cluster f*ck of cancer. Certainly. Being a bad-ass may make asking your friends to have a Bye-bye Boob Gathering pre-mastectomy a little easier. Being a bad-ass might be useful when networking with other young people with cancer. Being a bad-ass could be handy in starting a cancer-blog. All of these things might make how you cope with cancer easier. But dear god people, they do not change how many cancer cells the chemotherapy kills. There is no evidence that outlook or emotional well-being has any correlation to survivorship. So please stop saying I’m doing well because I’m a bad-ass, or that X person will be OK because they are a bad-ass. Cancer has no regard for bad-assery. That’s just not how it works.

I know your intentions are great. I don’t care. What happens when you participate in the discourses about fighting cancer and being a bad-ass does not map onto your intentions. What happens is that I feel like shit. Sometimes it’s just time to recognize that we can’t know how our words fall into a space we’ve never been in. It’s good then to swallow the words instead and keep them inside our bellies until we can let them out into a space we know well. I’m telling you, when you want to come into cancerland, keep the words that link being a bad ass with doing better in cancer treatment inside your belly. I’m telling you they don’t fall the way you imagine them, and I hear something entirely different. I hear you telling me how to be and I hear you limiting possibility and I hear you ignoring what I’m feeling. In cancerland, we’d rather hear you listen.

 

the cancer look

Being in the world while having cancer is its own unique challenge. It involves lots of looks. It invites all kinds of comments. It results in a  concerned voice from all kinds of folks who scrunch their faces and whine, “How are you?” I get at least ten of these comments, interactions and looks each day. At least. Just from the last few days, a few salient moments…

__________________________________________________________________________________________________________

Shoppers Clerk: (points to her head) Chemo?

Me: (raise my eyebrows)…….

Shoppers Clerk: Oh yes, I know. My friend just shaved.

Me: ……………(why are you telling me this? Nod. Smile.)

Shoppers Clerk: Have you heard of Relay for life? Have you ever done it?

Me: Nope, I’ve never done it.

Shoppers clerk: Well, I’m an organizer. And it is so meaningful. Everything we do is for you. (Grabs my hand.)

Me: (smile sort of. Try to dis-ensare hand from her strong grip but it’s on the mastectomy side and I have very little strength)

Shoppers clerk: You have to come, for the Survivors Lap. It’s so special. All the Survivors run a lap. And it’s so important.

Me: (eye roll. You don’t get to call me a Survivor. I’m so averse to that language. eye roll.)

Shoppers clerk: (still grabbing my hand) Everything we do is for you. You are so strong. You drive me to this work. I admire you so much and I know I have to continue because of you.

Me: Uh, OK. I don’t really know you so that’s kind of interesting. I do have to go though… (trying to pull hand away)

Shoppers clerk: Bless you, bless you. You are so strong, bless you….

Me: (finally get hand out, turn and shake head and run out).

__________________________________________________________________________________________________________

Professor I Have No Relationship With: So, just came up to see how your class was going.

Me: (This is weird. I didn’t even know this person could recognize me.) It’s great!

Professor I Have No Relationship With: Well, uh, how are you?

Me: Great! (But even if I wasn’t great, I don’t know you. What makes you think I’d tell you?)

Professor I Have No Relationship With: It’s just you have different hair every time I see you.

Me: It’s a fun trick, isn’t it? (If he wonders if I have cancer, why doesn’t he just say, Do you have cancer?)

Professor I Have No Relationship With: (Uneasy smile.) Well if you need me to teach for you ever, just say.

Me: Oh, I think I got it covered. Thanks!

Professor I Have No Relationship With: You’re sure you’re OK?

Me: I’m sure. And how are you?

Professor I Have No Relationship With: OK, well I just came up to make sure you’re OK.

Me: Thanks!

__________________________________________________________________________________________________________

Masseuse: So is your cancer metastatic?

Me: (Why do you care?) No.

Masseuse: Oh, you will be fine then, as long as you make some lifestyle changes. Cancer can be such a wake-up call.

Me: (How do you know what kind of lifestyle I have or what I need to change?) Oh really.

Masseuse: Are you juicing?

Me: Yes.

Masseuse: Are you eating organic?

Me: Yes

Masseuse: Huh! Interesting! Do you drink coffee?

Me: Yes.

Masseuse: Ahh. Because coffee causes breast lumps. You might move to green tea. Green tea has many health benefits.

Me: Hmm. (you do know there’s a difference between breast lumps and breast cancer, right?)

Masseuse: The other thing is walking. Women who walk don’t get breast cancer. It’s important to walk at the right speed, so you become just flushed. It will be very good for you.

Me: ……

__________________________________________________________________________________________________________

Friend: But you’re such a bad-ass.

Me: Yah, but that doesn’t matter.(cancer kills bad-asses all the time. Cancer has no regard for bad-assery.)

Friend of a friend: Don’t you think it matters even a little? Like doesn’t attitude matter at all?

Me: (I feel like punching the world) No. Cancer kills bad-asses. No. I think it’s too close too “be positive and you’ll survive.” I think it’s too close to blaming the person with cancer.

Friend of a friend: But not even a little? Attitude must count for something.

Me: (really? Are we still have this conversation? Oh, right, we are.) No. I do not think attitude matters. At all. (hello! If that were the case than we would have *thought* our way out of cancer, me and S and T and J and M and C and M and A and R and S and T and K and H, all of us).

Friend of a friend:….

Me: (I’m sure she thinks I’m a cancer curmudgeon who shut her down.)

__________________________________________________________________________________________________________

Nurse: But its’ suprising because you’re so young.

Me: Yah.

Nurse: I know a woman who’s kind of like you, young, but not as young. Her son is in my son’s preschool. We made her dinners when she had chemo.

Me: Oh? (I’m just out of surgery. Why are you telling me this?)

Nurse: Yes. But it was very hard. She had breast cancer for many years, until our sons were in second grade.

Me: (When are you going to give me the morphine?) Oh?

Nurse: Then, she died of breast cancer. She was so young.

Me: (Why are you telling me this? I only ordered more meds.) What kind of breast cancer did she have? Was it a late diagnosis? Was it ER positive? What stage was it?

Nurse: Oh, I don’t know. She was just so young.

Me: ….. (If you’re going to tell me about someone who died, please be prepared with their age, receptor status, chemo regime, stage, grade, surgery decisions, lymphosvascular invasion…. enough details for me to believe this won’t happen to me as well. Otherwise, shut up, surgery nurse.)

__________________________________________________________________________________________________________

the time i went cancer-crazy

So this morning I woke up bright and early because there was the sun shining through our dark curtains at 6 am. I proceeded to go a little nuts. I did a lot of laundry and a lot of annoying things on my to-do list. And then a call for people to run the New York City Marathon for Stupid Cancer floated across my desk. So I signed up. And paid the fee.

Umm. I don’t like to run. I’m bad at it. I’m slow. But I was resolute. I would start running, today, and I would run the NYC Marathon on November 2nd, exactly 367 days after my initial diagnosis. I was shedding the non-runner skin. I’d just do it till I liked it. I paid the fee: the $200 fee. I made my profile to fund-raise for StupidCancer. I was going to become a runner and I was thrilled with myself. I planned a kick-ass class for tomorrow and finished up my dissertation program and threw away an entire grocery bag full of cancer pamphlets about chemotherapy that I no longer need. I made Sammy a Sunday breakfast and cleared my desk space and decided I’d start running. Today. Because while November is at the end of the year and so seems far away, I realized with a start that its already the end of May, leaving me with five months that will be pockmarked with more minor surgeries to prepare for a marathon. My saving grace was not posting the fundraising page to FaceBook. Yet.

This afternoon I pulled a back-close sports bra on over my bandage and marveled at my ability to twist my arms around my back to close the clasp. This is the level we are working on: this was the first time I’d been able to twist my left arm behind me like that, until this morning, I’ve been pulling little camisoles up over my hips. The sports bra was a little tight on my fake boob and wound, but I was so excited I just loosened the strap as much as possible and ignored it. And off I went. I walked over to a dirt path in a nearby park and I started jogging oh so very lightly. Like I probably could have walked faster, but I wanted to be running. I had to work really hard to keep my torso still to avoid to much torso bouncing. Despite the fact that my left boob has no jiggle to it, which seems like would be perfect for running, the movement of the torso while running is kind of uncomfortable when you have a total of four healing wounds ranging in length from a centimeter to four or five inches in the chest area. So, you have to run very slowly and very carefully, such not to disturb any of the boobage or its related scars, when you are trying to start training for a marathon twelve days after your mastectomy. There is a small possibility I am not being realistic.

I think I went cancer-crazy. I think it must be the residual chemo. Halfway through the “run” it was apparent my marathon delusions are… delusions. I don’t do pain well, and literally, I could walk faster than today’s “jog.” Sometimes I have to learn this way. Sometimes I have to learn its not time to run yet because when I’ve run barely a mile my sports bra has to be unsnapped to release the pressure on the rock-solid boob. Sometimes I just cannot heed the words of the people around me trying to warn me.

It’s weird, because I cannot feel the rock-solid boob even a little, but I could definitely feel the pressure mounting, and it was too much this afternoon. And running with an unsnapped sports bra is totally nonfunctional, mostly because it means one boob is left to be a free agent next to the rock-solid boob imposter on the left side. I could feel the pulsing pressure starting. Various people will probably kill me if I mess up all those good-nipple vibes by giving myself an infection because I want to do something, anything with my body, so I turned home, defeated. The mastectomy won, the desire to keep the nipple healthy won, the want for a carefree summer is bigger than the immediate want of intensive exersize. I started scheming about how to play the cancer card to get back the non-refundable race fee. Maybe it’s not for me, after all. I think I’ll give it a week, see how the running goes. And then decide. If it is for me, I’ll follow the running plan, join a group. If not, something else will come along to help mark time to celebrate adventure. My cancer-buddy who is having the exact same surgery I had Monday thinks I can do it… and maybe I can convince her to do it with me. Who knows. We can be the “just finished cancer babes.”

Maybe I should get a daisy, and pick the petals off one by one- “the NYC marathon loves me, the NYC marathon does not, the NYC marathon loves me, the NYC marathon does not…” Because in the end it is about love, isn’t it? It’s about the kind of love my body can get from training like that, from accomplishing such a feat. But even I know it’s got to be big, squishy, healthy love. Painful love from the marathon isn’t really love, and love in the form of training that results in more nipple bruising just isn’t worth it. And so, we will see…. I’m gonna sleep on it.

…the NYC marathon loves me, the NYC marathon does not, the NYC marathon loves me, the NYC marathon does not….

 

 

 

 

the universe nailed it

The universe nailed it these last 24 hours. The universe did exactly what I needed, threw exactly who I needed into my path exactly when I needed them. I’m not into religion, and I don’t put much stock into something bigger looking after us or some premeditated design of the world. I do think we are all part of something larger- something we might call the universe- and that our actions are networked in such ways that mean sometimes what we do vibrates into places, spaces, bodies, and ideas we never imagined. And I do believe that maybe sometimes, that vibrating energy has a way of caring that exists only because we are networked beings, bodies and things in the world. That’s what I mean when I say that the universe nailed it: in the last 24 hours, the right vibrations shook me at the right moments more than once.

Yesterday I was in the middle of pushing what one of my mentors would call “the panic button.” I was exhausted. I was frustrated. I hated cancer (and will always). I felt woefully misunderstood, horribly overburdened, and totally inept at articulating why. And in the middle of this “panic button” meltdown, somebody called. That somebody was from Callanish (cancer support organization that runs the young adult group I’ve mentioned) and she was just checking in, making sure my surgery went OK. Somehow, she called at the exact second that I needed her to call. She had no idea how badly I needed her to call at that exact second, and really, nor did I. But she called. I realized in an instant that she was the exactly right person to be talking to at exactly that moment in order to right things in my world. We talked and I knew it would be OK. I just knew. I knew, and somehow she knew to call. That’s the networked universe at work. Thank you, universe.

Yesterday’s panic was mostly about exhaustion piled with the decision about whether to wear or not wear a wig to teach in today. I’ve had a particularly strong aversion to wigs for the last several weeks, even though until only six weeks ago or so I kept my bald head covered with hats, a variety of wigs, scarves, and even henna. I don’t know exactly what happened. It started in yoga, the bearing of the bald head. When I was good and sure that was OK, it crept slowly into the rest of my life- first at home, then on Facetime, then at the cafe downstairs, then out to breakfast, then to karaoke. And then I hung up my wigs and decided I never wanted to wear them again. I thought maybe I should wear one to my cousins’ wedding, but was dissuaded when it was too hot and no fun- besides, who doesn’t need a weird relative to hang their wig on a chair at a wedding reception? I was that uncouth, to my mothers’ complete disbelief. I’m that cousin. But today the wig situation was different.

Today was the start of a new course I am teaching- a classroom full of thirty two fresh-faced teacher candidates, students with whom I will explore multi-literacies in the context of critical social justice education. I didn’t want to wear a wig. I didn’t want to talk to them about cancer. I wanted to deny their normal curiosity about difference, to pretend they wouldn’t wonder about their bald girl-teacher, to act like nothing happened, to wish my difference invisible. I wanted to go bald because it’s more comfortable, it feels more authentic, it seems more like “hey you, world, it’s me” right now, even though I had a blast with all those fun wigs before.

But I couldn’t. If I went to teach bald, I’d have to engage their questions. I want them to be the kinds of teachers that don’t ignore conversations about race or sex or other topics pushed under the rug in today’s schools. I want them to be the kinds of teachers that deal with reality head-on, that answer questions and that embody risky pedagogy. I want them to question, to wonder, to engage. And if I was bald, you know what I was going to have to do in order to model engaging questions, dealing head-on with difference, chancing risky pedagogy? I was going to have to talk to them about cancer. No thanks. So maybe my pedagogy’s not so risky after all. Or maybe I’m just focused on multi-literacies.

And so this morning I donned my platinum and pale blue wig. I remembered what fun it was to wear wigs. My head itched. I participated in the fantasy that no one gets cancer, not even your friendly graduate instructor. There’s really not a lot of space to take up cancer in your university course, even though we desperately need people who can consider the distribution of health, technology, knowledge, and information in how communities are created, structured and maintained. There are other spaces for cancer in academia, I think, and I hadn’t a clue how to even open the conversation about my baldness in between media literacy and textual analysis. And so I faked it. And you know what? It was kind of a relief. I didn’t get any of those looks from students that I get everyday, those something must be horribly wrong looks. I just got those looks of oh no, we have to make a media project and I don’t know a thing about technology looks. Those kind of looks are fine.

I promptly removed my costume as soon as I was at my next meeting, but then I almost wished I’d left it on. Suddenly, I felt naked. Exposed. Obvious. But it was too late. I’d already whipped that sucker off and stuck it in my purse. I was watching two people from my research group do a practice run-through of their presentations. Their cancer presentations. While I has just come from an academic space where there was no cancer, where I hid my cancer, suddenly I was in an academic space that shines the spotlight precisely on cancer. The first presentation was benign enough. It was the second presentation that got shook me, that left me speechless.

I knew this was going to be about cancer. I knew these were both cancer-researchers practicing their power points about critical cancer scholarship. I felt awesome going into the meeting, sure this would be interesting, easy, “fun.” I was, after all, sitting at a table of friends and I wasn’t even alone in being the only person who’d had cancer in the room.

But.

There were videos. They were so real. Clips from the LuLu Sessions and Resisterectomy were both included, as were clips from Hitchcock’s very old tv series about cancer, Tactic. They were so real. They were so punch you in the gut real. They were cancer. They narrowed in exactly on what it feels like to have cancer, those perfect little moments of horror in which one can see reflected one’s own experience in someone elses’ narrative, and recognize the depth of connection in this shared horror. They were brilliantly chosen and assembled, painting a terrifyingly real picture of what it feels like to have cancer, a picture I wish I could not recognize.

The clips made me wish I was wearing a wig. I wanted to vanish into the floor, pull my wig on, run to the bathroom and sob, yet I was also weirdly riveted. It’s not often I get to hear smart people talk critically about cancer politics. I didn’t want to miss a single second. I wanted to soak it in, to feel it, to pull this knowledge being presented inside my body, to hold it tightly and carefully. But I felt so horribly obvious, even with the various layers covering my lobsided chest, and my bald head made it worse. Most everyone in the room knew I had cancer, but still, I wanted not to be obvious. I didn’t want them to know how heavy the stone in the bottom of my belly felt. I didn’t want anyone to know both how badly I needed to get closer to this knowledge, and also how blindsided I felt as I approached this knowing.

The first presenter- the only person in the room who didn’t know-  must have wondered what on earth was wrong with me. I was speechless. Literally. I kicked myself for having taken the wig off. I crossed my legs and my arms, defiant. I would get through this. I refused to run to the bathroom, for fear of being even more obvious. I want to write about (young) breast cancer. It felt like a test. I was in my scholarly community, cancer was everywhere and I couldn’t lose it. I needed to prove- to myself- that I could be in a academic cancer space.

I sort of succeeded at being in the academic cancer space. I needed a giant hug afterwards, but it was in its own way, generative. It’s better to talk about it than to hide it. I needed to be grounded in and surrounded by such smart cancer scholarship. It’s enormously settling to know that this work happening at all, even though it was near impossible to stay in my chair and contain (most) of the tears to the place in my throat where no one can see them. Maybe the universe knew I needed to see these presentations on this day, and maybe the universe knew I needed to witness this act of absolute bravery in the face of cancer.

We need to talk about cancer thoughtfully, and in scholarly settings. I have so much to say, not about queer and gendered cancers, like these researchers, but about young and gendered cancers. They showed me today, how people who have had cancer can work with this most challenging of material and can bring together images, and ideas in such a way that powerfully intervenes in how cancer is thought about in the world. It is being done. It can be done. They will continue to do this important work. And soon enough, I can do it too. The universe knew, today, that I needed that model of cancer, cultural production, and scholarship. And so I am grateful to be part of this dynamic group of scholars, some of whom study cancer.

And the universe- the one we are all part of, the one that vibrates with all of our actions? She wasn’t done yet. You’ve all been sending sweet, good, positive, caring love vibes to the little purple nipple. Today I saw Dr. Yoga-Surgeon, who thinks the little purple nipple is actually the little train that could. She looks good. There was some scraping or cutting or I don’t even know what of the part that was once purpley-black, but I didn’t look and it’s definitely better that way, because when I looked again, that little nipple was pink and bruised and little oozy, but a whole lot closer to normal. Maybe it was all the protein I ate. Maybe it was the gentle exercise and increased circulation. Maybe it was the special nipple-saving cream. But maybe it was the good vibes you all sent through the networks. We’ll never know. But it doesn’t really matter, because the nipples’ back in the running, folks.

Postscript:

After writing this post, I hopped on my bike and rode down to City Square mall where I normally practice yoga. I haven’t been because, well.. mastectomy, and because I can’t lift my arm up high enough to actually do anything, but I’ll be back in there before you know it. Anyways, I was going to buy wine. As I locked up my bike, my yoga-cancer buddy J texted me, to say AWESOME about the nipple, and that she just did yoga! Next thing I knew, there I was, in the hot yoga locker room hugging my favorite yoga teacher and J and but of course, Dr. Yoga-Surgeon. It was so lovely to see them all in the hot place I miss so much, and to know I’ll be there soon. Community. It makes so much sense. I feel so much more energized, ready to take on the world and hopeful for something awesome.

Community is made in the universe. The universe provides networks, sensory points, connections, pathways. It’s our job to soak in the brilliance of the universe when our connections and pathways meet at a sensory point and produce electricity, buzz, warmth, knowledge. The universe might present us with possibility, but we humans need to make community. We need to reach out to each other and do the hard work of connecting. And soon enough, it becomes easy. It becomes three amazing women changing in the yoga studio when you bike down to get wine. It becomes just what you need.

I cannot WAIT to get back to yoga. I’m about to start willing my surgery wound to patch itself up, my arm to allow me to lift it, my body to be ready to stretch without hurting. I cannot wait. I biked for the first time today, which was entirely amazing, and I’m definitely headed to more movement. There’s so much I want to do with my body right now. So much. As soon as I integrate this little fake boob into my body, I plan on moving like crazy. You keep it up, universe. You’re awesome. You nailed it again today, when I thought it wasn’t more possible to get it even more right. You nailed it.

Post-Post-Script:

First, my cancer-buddy S who I so completely adore texted me at the same time I texted her. That’s got to be the universe, taking care. Now universe, please take care of both of us, so we can have a fuck-cancer drink in thirty years.

Second, my bestie said she’d help us plan our Hawaii vacation. Obviously, she read the cancer-tired blog post, but still, there’s no one better suited. She knows who we are, what we need, and how things will feel to us. And we now have the most ideal kind of help. There’s no one who knows me or who knows me and Sam better. Relief.

Perfect, universe.

 

 

cancer-tired

I am cancer-tired. Cancer-tired is distinctly and directly wrapped up in having cancer. It is the exhaustion resulting from rapidly becoming literate in a new language and becoming able to aggregate, navigate, and reproduce cancer-information, and being forced to use cancer-information in order to survive every. single. second. Cancer-tired is exhaustion from decisions, exhaustion from opinions, exhaustion from options, exhaustion. Cancer-tired is rooted in not having a break from cancer, not being able to move away from cancer, wondering if you will always be so sedimented in cancer.

A couple days ago, we decided we needed a vacation. We never went on our honeymoon, because well- I got cancer. So we started looking again, at Italy and Thailand. And then we decided actually, we needed a beach retreat. Something requiring no trains, no multi-city jumping, not too many maps. Something extravagantly easy. Hawaii, the Bahamas–  think pools, beach, sun, fruit, and straws with curly-cues in them. Some beautiful place where it would be totally appropriate to stay in our little love nook for the whole week, somewhere we could have coffee on a porch overlooking the ocean in our pajamas, somewhere we would either have a fantastic kitchen for culinary adventures or someone else to cook for us, somewhere where we could swim in salty water and not worry about the hour or the calendar. That kind of week seems absolutely necessary.

But in order to make absolutely necessary possible planning is still entailed. I literally cannot do it. I don’t want to make a decision about which island. I don’t want to cost-compare between tropical retreats. I don’t want to figure out if we need a rental car. I am too tired of making decisions. I am too tired of aggregating information. I am too tired. I don’t care if its touristy, though judging by the number of recommendations I have received for “non-touristy” spot X, it’s probably taboo for a young academic who loves to travel to desire easy luxury. Gasp! I don’t care what anyone thinks. I’m too cancer-tired to care. I have zero energy left to do any planning. My to-do list is too long already, and I hate these sorts of morbid details.

I have no energy to become literate in a new vacation destination. I have spent the last year becoming literate in cancer. Want to talk about chemotherapy cocktails or survival rates or young adult cancer and fertility? Fine. I learned the language. I can speak it in my sleep. I probably added thousands of words to my vocabulary. Certainly, by becoming cancer-literate I have stumbled upon scores of online communities and lots of new friends who have filled the gaps in my cancer-education. I read new studies all the time and extract the information that is relevant to me, filing it away for some time when I am in a hospital discussing my life and death chances- and I’m not being dramatic, for once. That’s a real conversation I have regularly in hospitals.

Cancer-tired is to feel what it means to be precarious, without the security of tomorrow, and to stop caring not because you’ve reached a enlightened state of awareness, but because you simply do not have the energy to care. This is a fine point that is often skewed by others without cancer. People seem to think cancer delivers people to a state of more-knowing, to a place of “I’m better now because of the cancer,” to some kind of desirable knowledge born out of sheer tragedy. I guess that’s what you can choose to see if you refuse to see cancer, and if you won’t witness that my not-caring about tomorrow is mostly about my total lack of energy, my sheer exhaustion. Cancer-tired isn’t sexy, illuminated, intelligent, or enlightened. It’s tired.

There are legions of people out there who know about cancer-tired. Now, I am one of them. And I am cancer-tired.