chasing life: sex, gender, cancer

Lately, I’ve been following abcSpark’s new show, Chasing Life. It’s about a young woman diagnosed with Leukemia at 24. It’s about her experience: what’s happening, who she tells, how her family and friends handles her illness- in both awesome ways and shitty ways, the cancer-friends she makes, the insane complications and heartbreaking moments. It’s got its fair share of problems I could dissect as someone committed to a feminist analysis of media texts…. but as another young adult with cancer, I love it. They get a lot of things right- the anxiety about telling, the over-caring and the under-caring, the fertility preservation issues, the total crap that chemo is, the lifelines that cancer-friends become even though you’ve known them for such a short period of time, the weird and hopeful naturopathic treatments.

One of my very own friends who has really ridden the cancer roller coaster with me, someone who has come to almost as many appointments as Sammy, who has heard the good, gross, and horrific, who has shown up always even though it was hard, has been watching Chasing Life alongside me. I did have to suppress the familiar feelings of critical engagement when I first saw this scene, but I did suppress them, if only so I could stay engrossed in the story, until that very own friend of mine who’s ridden the cancer roller coaster with me brought it up again.

The scene is this: In episode 8, the group of cancer-friends get together. One of the young women- one portrayed as always very sweet, with a scarf on her (presumably) bald head, is about to live out one of her life long dreams. The cancer-friends gather in a strip-bar. And suddenly, we see this always-sweet-always-scarf girl on stage, wearing a fabulous and luxurious, long, blonde wig. She’s pole-dancing. She’s taking it off. Because we know she has cancer and is so sweet (and presumably innocent because she’s sick) her pole-dancing is pretty much absolutely adorable, her friends are thrilled for her, and this one rich, white-boy cancer-friend who supposedly makes all his cancer-friends’ dreams come true with financial gifts (he paid for the main characters’ fertility treatments, anonymously, and took another cancer-friend on a trip he’d always wanted to go on pre-death) shines as the humble but sweet and so generous star- he arranged  this opportunity for the sweet cancer friend to pole-dance. And then Ms. Stripping/Pole-dancing does the thing that makes us love her even more: she whips off her wig to cheers of “Take it all off!!” You can watch it here on Youtube- it starts at minute 18. 

OK. So my first thought, when I watched this scene, was- YES SHE IS SEXY. YES SHE CAN BE SEXY WHILE SHE HAS CANCER. YES SHE WANTS TO BE SEXY WHILE SHE HAS CANCER. I was happy to see a representation of cancer as normatively sexy, and excited to talk to my cancer-friends about how cancer = not sexy, and there was this Chasing Life moment to talk all about sexy, cancer, gender, desire. So what does it mean for a young woman with cancer to want to be looked at, to want to place herself in a situation where others see her as sexy, to dare others to see her as a sexual being? What does it mean to be able to acknowledge those kinds of desires? I mean so many people have them and ignore them, and here we have a media representation of a sick girl throwing her sexuality in your face in a normative way, in a way we are accustomed to seeing healthy, hot, hyper-sexualized young women?

My dear appointment-attending-always-showing-up-even-when-it-was-hard friend, though, she called me and was horrified at how this young woman could only be tentatively sexy because she’s the “godly” and nun-like character, the one who could do no wrong- she does embody the typical good-girl persona, the one who could never do any wrong. There is a serious problem in our world, where young women’s sexuality is persistently denied, framed as dangerous, racialized, and otherized. We police girls and young womens’ bodies with school dress codes, decisions about what’s “appropriate,” and regulations and standards that dictate how young women should move, who can be sexual, how whiteness and upper-class-ness correlate to a latent but private sexuality. This scene played into many of those  stereotypes.

Yet, I’m not ready to give it up. There is a way in which in contemporary media culture, sick and disabled bodies are not sexual bodies. Sick bodies are rarely cast as desirable bodies: rather, they are to be taken care of, they need help, they are infantilized when everyone else knows what is better. Sex is rarely discussed by doctors, though sex conversation runs rampant in young adult cancer circles. There’s an undercurrent, but when have you seen a body so medicalized as bodies are when they have cancer, also take up normative representations of what is sexy? Rarely.

It’s an interesting conversation for me, because sex, gender, and cancer all circulate around the body. As someone who has had breast cancer, my cancer feels like it embodies all of the conversations surrounding gender, image and sex in new ways. I am mostly left with questions, as I rethink this sexy pole-dancer scene. Sure, I might have liked it more if she had some kind of sex desire that was totally non-normative. But would I have even recognized it as sexy? What I can definitely recognize as “sexy” is a girl dancing on a pole, even if I can critique why that particular image is really problematic.

So then, what happens when the infirm body, the chemo-body, the pale body, the cancer-body takes up pole dancing? What about when she owns a secret desire? What about when its arranged for by a young white guy who ends up looking like a hero? Do we all need young, cute, rich white boys to manifest our desires, put us up on stage? Is it his gaze that makes her sexy, his acknowledgement that she looks good, or is it that she actually looks good? Why is he so prominent? I think part of what seems really fascinating here is the relationship between this wish-granting rich white cancer boy friend, and this young angel-like girls’ desire.  There’s something really sticky, really powerful, really concerning, really shocking, really hopeful-  about a girl body with cancer doing a sexy dance in front of her cancer friends.

Lots to think about tonight, about the intersection of sex, cancer, sexuality, dancing bodies, gender, cancer friends, fake breasts, media images and representations…

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we need each other: tiliches, cheese graters, lumpectomies

The hospital jerked around my lumpectomy surgery a thousand times, and they made me feel like a tiliche. A tiliche is, in Spanish, a little rag, one that can be jerked around and that flops in the wind. When I hear the word tiliche, I imagine a red rag tied to a stick, a red rag being whipped around in the wind without any control. First it was next week, then last week, then this week. Thursday then Wednesday then today, back to Wednesday. Tiliche indeed.

You see, I have a benign lump (so they say) in the healthy breast. We’ve known it was there for a while now. On mammogram, ultrasound, and biopsy, it shows as benign. You know what else showed as benign on mammogram, ultrasound, and biopsy? My cancerous breast lump. So I don’t exactly have a whole lot of faith in the medical establishments’ ability to diagnose breast cancer. That’s why I’m having a lumpectomy, tomorrow, to take this lump out and make sure it’s benign. I’m a tiliche in the wind and I don’t have much trust that they know how to find a breast cancer lump in my body.

Each time the wind whips in a new direction, I have to scramble. Carefully laid plans with the best wire-insertion buddies (a totally inhumane procedure in which they insert a wire into the lump so the surgeon can find it) and people to pick me up and snacks for after are blown astray. They have to be reassembled, because if you don’t bring someone to pick you up in the middle of the day on some random weekday that keeps changing, they’ll cancel your surgery and then reschedule it probably seventeen more times. So at each cancellation, you have to figure out who can bring you, who can sit with you, who can pick you up.

This is one of the worst parts of cancer, one of the parts that rips the dignity associated with being able to take care of oneself right out of your hands, one that dangles your independence just out of reach and laughs when you realize you’ll never quite trust your easy independence as you did before. And so I was worried.

One friend- the best local friend- could do the original date but not the changed date, and then not the changed the second time date even though it was back to the original because it was at the last second. Another friend was missing that and needing to do this. Each time you have to ask, it feels a little more like a cheese grater running across your elbows, and you know you are a little bit more and more like that red tiliche flapping in the wind, hoping someone will catch you and ground you but not really sure anyone will. So we got it all set up for the second date, with Sammy dropping me off then heading to work, another buddy hanging around, and my mentor picking me up. And then the date changed with less than twenty four hours to the new surgery date: tomorrow.

Tiliche. Again. That day X doesn’t have a car, Y has a meeting, Z can try and move stuff around…. everyone wants to help, but the metaphorical cheese grater is still rubbing along my elbows, and only mine. And truly, I hate asking. It’s exhausting. It’s annoying. It’s not me. It’s risky, because people can and sometimes have to say no. I’m the only one who’s deck of playing cards doesn’t include no, the only one, who, when asked “Can we reschedule your surgery for tomorrow, be here at 6:30 am?” can only really answer, “Yes, doctor. I’ll be there,” though I’m thinking “But I have no idea how.”

But it worked. Sam is dropping me off. A cancer buddy is dropping by to crack bad jokes while we wait. A friend who called to say hi today asked if it would be helpful for her to swing by and see me while I wait in the morning. I said yes. And yoga J is picking me up. It takes a freaking village to have cancer, and it requires an ever-expanding village, because people in the village get tired. The person at the center of the village gets tired, too, but the cancer treadmill doesn’t stop, it just slows when “has cancer” morphs into “had cancer.”

So I’m grateful for the village, the one that is always expanding with new twitter buddies and friends to share wigs with, and the one I’ve had since before cancer, and all of them that make sure everything works out, even when asking for help feels like elbows on a cheese grater, even when needing to depend on someone feels like a tiliche in the whipping wind. Next time I know someone who has cancer, I’m going to make sure to check in with them about pick-ups and appointment buddies. Oh wait, I know tons of people with cancer. I’m going to text them just as soon as the pain meds wear off and I’m allowed to drive again.

Tiliches, cheese graters, community. We need each other. Tonight, I am grateful.

got married, got cancer, got Ph.D.

That’s how it went: I got married, I got cancer, and I got a Ph.D. We could say the cancer treatment was bookended by marriage and a Ph.D.. Highest highs, lowest lows, weirdest moments, sweetest love. That was the last year. As we approach our one year wedding anniversary now as Dr. & Mr., (did you know Dr. always goes first, and it’s kind of effed up that we require a piece of guidance for what to do in formal situations when (gasp!) she outranks her husband, but I’m also fist-pumping because it seems like we doctors bucked the patriarchal ettiquete system and I love being first and I love bucking the system, so it’s a win.) it seems appropriate to reflect on the sheer madness of this life we call ours.

The sheer madness, the absolute horror, the queer fortune we stumbled across in the darkness. Some people say that getting my Ph.D. is a silver lining, or building a wide cancer-support network is a silver lining, or that finding all the young writers and poets and media makers who had breast cancer is a silver lining. I completely disagree. Maybe it’s a queer fortune. But it’s not a silver lining. I will not, and I repeat, will not ever cast this queer fortune a silver lining. I’m absolutely unwilling to participate in a system that tries to appreciate, celebrate, or otherwise make pink, pretty, and palatable a disease that has manifested in our bodies because we continue to ensnare ourselves with capitalism and we get sicker and we yet we refuse to take the kind of radical political action that would hold transnational companies accountable for causing pain, illness, death, horror. So, I’m unwilling. I won’t engage that way. No silver linings. But maybe I can think about the support of my community as queer fortune. I have found friends, I have found role models, I have found celebrators and I have found people who can cry their eyeballs out with me. And besides, now I have a Ph.D. so I’ll base my resistance to silver linings in research and theorize my way out of ever needing to relate in even the most subtle ways to some mystical duplicitous gratefulness for cancer, and then I’ll run into the sunset with my queer fortune.

Because guys, I got the Ph.D.. I have wanted those three letters after my name since I was like 20. I remember asking a young professor I had my senior year at Pitzer College again and again, how she decided to do the Ph.D.. She told me her story, which involved communities of Asian American baseball players, more than once, until she tired she turned to me and asked, “Haven’t I told you this before?” Truth be told, she had. More than once. I just wanted to keep hearing it, I wanted the words to wash over me, I wanted to imagine myself in her shoes, each time she recounted how she got her Ph.D.. But I got my Ph.D., and I don’t need to imagine myself in her shoes anymore: I got my own big-girl heels in which to do my Ph.D. dance. Maybe she has an inkling of the sort of impact her story had on me. Maybe I should tell her.

On Dr. day, I was nervous as nervous could be. I arrived early. I was too nervous to drink my jar of perfectly juiced organic vegetables, but I guzzled my almond milk latte. I flipped through my slides. I stared obsessively at my theory and concept maps. I could only half-acknowledge each new person as they arrived in the room, the committee members settling in around the table and everyone else taking seats on the periphery. I made sure my supervisor had a secret hand gesture in case I was going way off track, a gesture that would scream to me and only me “re-focus!” I listened on repeat to wakawaka, channeling all the AMIGOS spirit I could muster.

And then it began. “The exponential rise in access to networked media has paralleled a research trend that celebrates participatory practices….” And the nerves calmed in about thirty seconds because I realized, DUH, I’m talking the stuff I dream about at night. And I do mean dream at night. This is theory with which I have a deeply embodied relation: in fact, there’s one book that whenever I open it, I want to climb inside. I want to get my body between the lines of text, and know how it feels to lay inside of those ideas, I want to taste the words and eat the ideas and snuggle up really close with the sentences. I want to climb inside the pages. I’ll let you imagine if its this book, or this one, or this one, or this one.

And you know when I relaxed, at the defense? I relaxed when I got to the methods slide, and the bullet point reminded me to “explain AMIGOS,” and I could feel all those people, that vast community, that gigantic network of people dancing to wakawaka and planing youth workshops and feverishly believing in a world that doesn’t yet exist.  I could explain AMIGOS backwards, upside down, and inside out. So when I got to the bullet point, 75 seconds into the presentation, I took a deep breath and in that AMIGOS explanation, everyone who was ever with me in AMIGOS was present. My host mom from the Dominican Republic who used to braid my hair every morning was there, and board members with whom I’ve struggled over the meaning and mission of AMIGOS were there, and Maribel, who I ran the Boaco project with was there, and the girls I went through AMIGOS trainings with were there, and my staffs and youth were there, and my Boaco truck driver Alfredo, who got into and out of so many pickles with me was there, and the Plan Boaco team was there, and the communities that loved me, and the youth that I love were all there, in those words.

And so I could breathe. The rest was history. It felt so good.

Then came the exam period, during which the committee poses questions for the candidate to answer. And the questions were so generous, and so insightful. I got to talk about practice and theory and movements and ideas and evaluation and hope and democratic practice and agency. I could not have asked for more glittery, exciting, hopeful, engaging questions. I loved every single one. They were light and playful. The external report was magical and exciting, and magic in the form of a report from someone who’s work I admire so much makes for so much bright, hopeful energy. And my supervisor with the secret-code-for-refocusing? She never made the signal, she only nodded and smiled really big, and I so I knew we were golden. I know so well the way she peers over her glasses with one raised eyebrow as if to say, this isn’t good enough yet, right before she dismantles my theory like someone pulling the wooden piece out of a jenga-tower that makes the whole thing crumble. And so the smiles were a big deal.

You know what was especially awesome? My supervisor said this whole thing about being able to do critical work without extinguishing the passion-flame, about being able to do post-structural and feminist critique and still believe in the power of young people to play with revolution, and about being able to write a critical diss and still be hopeful for something outside of capitalist structures. There have been times when I have doubted AMIGOS. Moments when I have wondered, wow, is this too colonial, too racist, too gendered for me to associate with? And yes, sometimes, it is all of those things, but even in the face of that stuff, I have to say my belief in AMIGOS is still brilliant and passionate and willing. I believe. I love youth and technology and democratic practice. I am hopeful. And I think I can ground that hope in theory, in Tsing’s friction and Zerilli’s democratic practice. Knowing that my supervisor M thinks so too is really, really cool.

And then the committee deliberated, and we waited outside and chewed our fingernails, and finally they came out to get me, Dr. Hauge! And there were no revisions. And it was only 70 minutes long, which is about 50% shorter than every doctoral exam ever. And so now I just need to turn this thing in, brush my hands off, and figure out what on earth is next.

But what is next can wait. We went out, we ate, we drank, we celebrated, we slept. And the whole time, I was thinking, I’M A DOCTOR! And I got to celebrate that with people I love so dearly and so much and it was awesome. And I still am on a kind of high, because well, I’m a Ph.D..

So when people say “you know what cancer cannot do?” I say bullshit. Cancer can take and ruin everything: it definitely can cripple hope, shatter love, and erode friendship. It invades the soul, steals life, and conquers the spirit. It is insufferable. It seeps into every corner. But I got a Ph.D. anyway. Not the same Ph.D. I would have gotten without cancer, for cancer forever changed everything. But a Ph.D..

People often ask how. They want to know how I finished writing, held committee meetings, and re-drafted chapters between chemotherapies and mastectomies and blood draws. I never really know what the other option is that everyone seems to refer to, that would have been “easier.” I missed that memo. It always seemed like this was the only choice. My supervisor never blinked at the cancer. She just listened and then kept pushing the theory, as she always had. She had breast cancer, and maybe she knew that the consistent distraction my dissertation work provided was comforting and safe. It is very weird I got breast cancer while working under someone who themself had breast cancer, and who now writes about the cultural politics of cancer. Maybe that was some kind of queer fortune. It is odd, wonky, and uneven. But it was something to grasp and hold steady in the cancer-tilt-a-whirl. And in the end, I can say, had cancer, have Ph.D.. Had cancer, have Ph.D..

I hate cancer. Getting the Ph.D. is not a silver lining, but it is a moment of really really awesome achievement. The people around me are not a silver lining, but they are so full of love and sparkle that we are all covered in metaphorical glitter. I am grateful for these people, but I didn’t need cancer to get them: I had them before cancer. Now I just have them and cancer. I wish I just had them.

It started with a wedding, and it ended with a Ph.D. What a crazy 365 days it has been in my life. So to sum up, the year in review: got married, got cancer, got Ph.D..

 

 

 

 

 

on money, working, cancer

Some people are always shocked- happily so- when they find out I continue to work and teach and everything as I do cancer. It seems to satisfy their need for me to be OK- “Well, she’s working, she must be OK!” I want to be clear about why I continue to work.

I have to.

I am a graduate student in the end stages of my dissertation. This is work. Some people have the wild idea that doctoral studies are not really work, and I’m not even going to get into that. I work harder as a doctoral candidate- between writing my dissertation, teaching courses, doing service work, collaborating with other grad students, supporting an academic unit, and participating in various conferences, talks, and other scholarly activities- than I ever did when I worked in non-profits and in schools. This is not the topic.

As a graduate student, I do not have access to paid leave. My Vanier Fellowship only provides paid maternity leave. There is no paid sick leave, not even when you have life-threatening cancer. When I was diagnosed, I did call around my university, wondering what sorts of resources and supports were available. I called all of the appropriate departments and centers and people who oversee graduate studies. There’s really no safety net for students who have life-threatening illness during graduate school. Had I taken a leave of absence, I would have had to pay back funding I had already received in the semester where the leave began. I was welcome to take a leave, but my funding would be put on hold. If I took a leave, I would be ineligible for any university based work- no teaching, no supporting academic units, none of the things available to me as a graduate student.

I decided I did not need to be stressed out financially on top of being stressed out about cancer. Was this a decision? Yes. But would you decide to take a leave when it meant that none of your sources of income would be available to you? And so, I continued working on my Ph.D. It did not seem I had a choice, and even now, six months into cancer, I don’t know how I would have managed the decision to stop working.

Financial stress is one of the major differences between young adults with cancer and everyone else. Often, we do not have the resources to take time away from work in order to heal. Of course, there are plenty of older folks who face similar challenges, but particular to my experience is age. Cancer survivorship is classed, and those with more resources fare much better. But this is about relative age and about youngness. Trust me, it sounds great to be able to watch movies all day and spend more time exercising and crafting perfectly organic meals, and my body would thank me times a million if I could take off time to rest and heal. The thought, though, of having no income at all made my skin crawl at the beginning of this, and the last thing we needed was more stress on top of the cancer. I need to justify this decision to myself and to everyone around me, and so I remind myself what a good distraction the dissertation is, I remind myself I really want to defend in June, I remind myself I want to get on with my life. And it’s true- I do want those things. I just might want something else had there been another option.

So, when you ask why I continue to work, and applaud the decision, take a moment to consider what isn’t said. Think about the financial impact, on top of the cancer, of not working. This comes up with other young adults with cancer all the time. Everyone is stressed about finances. Many of us are working. Others moved in with Mom or Dad to save money and to have access to people who could care for us while we are sick. Those of us who don’t live in the same city as our parents, like me, often ask the parents for financial help during this time, and some of us, like me, are lucky enough to have parents who can help, but many of us are not. I am unsure why finances are so taboo, but let me tell you, cancer burns right through any savings, cancer eats up extra money, cancer makes money really, really tight. For some reason, it seems like the world wants cancer patients to take it easy, do nothing, rest, but the world never whispers about the financial strain of resting. It seems like those around us want to believe in this mythic world of resting and relaxing in the face of cancer, and in this mythic world there is enough money for organic groceries and naturopathic care and expensive post-surgery clothing. It’s a myth, guys. Please join me in reality, where I spend my time with other young adults with cancer who tell me stories of  watering down yogurt to save money, sewing their own drain-holders into camisoles since they can’t afford the post-surgery clothing, moving in with their parents because their resources have been obliterated, and, in my case, teaching a course starting ten days after my mastectomy surgery. Don’t tell my surgeon.

Finances considered, I think there are better and worse times for getting cancer. A worse time is when you are not financially stable enough to take time away from work to heal. A worse time is when your barely existent savings are wiped out entirely by cancer costs. A worse time is when you worry about how much parking and wigs and mastectomy camis cost more than you worry about how long you have to nap or which kind of reconstruction you should have. A better time is when you are much older, have a secure job and nest egg, and can take time off work without worrying about how you will pay for the organic cucumber juice your naturopath recommended. Sure, it’s never going to be great, and it’s always going to be a horrendous time because cancer is horrendous.

For many of us young adults, cancer smashes the heart and the piggy bank at the same time, and we are left to wonder how to start picking up the pieces from this particular kind of ruin. It seems good, productive, helpful, necessary to acknowledge these distinct challenges. Don’t assume that a working young adult with cancer is working because they want to, they need to be distracted, they like their work, they are doing “well,” whatever that means. They have cancer. It’s probably a very complex decision, and there are probably layers and layers of challenges underneath the decision to work. For me, there are. I am glad I am working on my dissertation, I and do hope to finish in June. But that is not the whole story, and somewhere a little bit of the road that led to the decision to continue work should be illuminated for everyone else, should be heard and seen and considered. I don’t know why we cringe so much at the mention of finances- and even I was worried, as I began writing this post, about exposing our financial situation, about discussing money. But really? That’s what our world is built on. Why would it be any different in cancerland? Cancer bodies play in capitalism, too. You would think that would be obvious, with all the products marketed to us, especially to breast cancer patients. Our buying power is coveted, but we forgot to talk about our piggy banks. Broken hearts, broken piggy banks. That is young adult cancer.

passing

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

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

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

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

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

So no, I’m not interested in passing.

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

disillusioned

I feel disillusioned. There is a way in which cancer grabs any last shred of not knowing, any leftover innocence and throws it to the wind, never to be found again. I really doubt I’ll ever feel the kind of innocence I didn’t even know I had about life from the pre-cancer times. I don’t think about the future as a wide, expansive space of possibility anymore.

It seems more like a life or death game, where you need to sprint from shelter across a field to another shelter, with snipers shooting at the empty field. You don’t know, in this game, if there is another field you will need to run across after you make it to the shelter, or how many fields there are after that, or how long they might be, or if your comrades will be shot at and wounded or killed while you cross the field together. You regroup with the others at each shelter, holding each other carefully and checking for wounds. We patch up the scrapes and sleep for a while before we build enough energy to peek out again, peer across at the next field, and wonder if the next forest that will provide shelter will be the forest that is actually the healthy world again, if it will mean we are done sprinting, done dodging bullets, done wiping wounds. Sometimes people are catapulted from the shelter into the middle of the field, sometimes they are made to languish in the shelter, not knowing when they will need to sprint across the field they are staring at, amassing information as they wait and watch others cross, anxiety mounting. There is no way to know. And so we cling tightly to each other and hold hands and whisper encouragement and duck our heads and start sprinting. It’s terrifyingly comforting to have each other, the only people who know what it’s like to sprint across that field, and to hold so tightly to each other and know we won’t all get across to safety in one piece.

The disillusionment isn’t only cancer. It’s also the academic job market. It’s wondering if I should duck out now, or keep slogging through, hoping to beat the odds. I knew these odds existed when I entered graduate school, and I’ve done *everything right* as they say, publishing and conferencing and teaching a little and finishing the diss. Still, a great many of us know brilliant young scholars with a Ph.D. and without a tenure track job. I just now find myself in a double-bind of unknowing.

All this unknowing, this deep sense of disillusionment, this feeling that the world is not as I thought it was, but actually, much crueler than I ever imagined makes me want to speed things up. It makes me want to bandage everyone in a hurry and get through the sniper fields. It makes me want nothing in moderation, and it makes me want everything in excess. It makes me wonder if we will every again catch our breath long enough to wonder at the nighttime sky. It makes me want to speed up and slow down, fit more into the afternoon, stay up all night long. It makes me wonder if this is the new normal, operating at high intensity, heightened awareness and anxiety, speed so fast it might be a blur. Will I have time to think about whether the academic job market will be kind to me? I do not know.

And so I haven’t posted, lately, feeling this way. Wondering. I’ve wondered what to post. I’ve started many a draft. You’ve checked in and wondered what’s up, where the writing that sometimes just gushes out of me is, if everything is all right. I just don’t know what to write. I can’t decide. I don’t know what to think, or which way is up. It’s confusing. It’s disillusioning.

Thoughts on Lisa Adams & the Media Flurry

So by now, you have probably heard about this whole Lisa Adams debate. Basically, two married journalists, Emma Keller and her hubby Bill Keller- wrote about Lisa’s awe-inspiring twitter presence (and related blog) with regard to her stage IV breast cancer. Both journalists were critical of Lisa, calling her writing about her cancer and about dying “TMI,” being generally totally tone-deaf, and in my opinion, absolutely missing the point of social media and why someone with a life-threatening illness, indeed, someone with a terminal diagnosis, might put herself and her experience out there for others to witness. I won’t rehearse these amazing critiques, responses, and thoughts on Lisa and her writing, but here are a few great pieces about what has gone down.

The initial articles shame this woman who has boldly, humbly shared her experience of dying. As if her metastatic breast cancer was a dirty, dirty secret she should hide. As if she did something to cause her breast cancer. As if she’s incapable of making her own decisions about what to share in public digital spaces. As if she were a child to be reprimanded for sharing her hurt. As if rupturing the picture-perfect personas that populate digital publics but that don’t really reflect life is a horrendous transgression. As if we were not all responsible for the cancer invading her body, precisely because we’ve not yet launched a massive revolution contra the insanely toxic capitalist invasion of our bodies, our earth, our world.

I was floored to discover Emma Keller, the initial writer, herself had breast cancer. How on earth…. I thought, and then, suddenly, it all made sense. She’s probably deathly afraid of a recurrence. Simply terrified. And there is Lisa Adams, blogging and tweeting away, the embodiment of exactly what she hopes to never be. She probably wants to run in the other direction, forget it ever happened, refuse the possibility. It would have been better if she just turned off her twitter feed.

The thing is, we live in comfortable la-la-land about breast cancer. Everything is happy-happy pink, people call themselves “survivors” (I just can’t get on board at the moment- it seems to imply that other people had to die so the “survivor” could survive those other, dead people. Can’t do it.), and we have celebratory walk-run-things in which we gather girlfriends, wave pom-poms, and adorn ourselves in clothing, makeup, and all kinds of decorations that come from the companies that produce the very toxins linked to breast cancer. It’s a la-la-land.

No one wants to know about the deaths, no one wants to hear about the treatments not working, no one wants to stare down the statistics and imagine themselves on the wrong side, no one wants to sit and listen to what it’s actually like, pom-poms and survivors aside. Lisa Adam’s tweeting ruptures the la-la-land. It’s public. It’s not pink. There’s no pom-poms, because, in fact, she’s dying. It’s not exactly something you can cheer on, there’s no “surviving.”

You might not hear these stories. I hear them everyday from other young women with breast cancer, from women with breast cancer in all different stages. I hear about, and feel the constant pressure to smile and say its “getting better” and that we’re “making it through.” I hear about, and sense, feeling alone in the midst of a crowded room, even when there are people bringing food and texting hearts and offering to be appointment assistants. I hear about and tango with the fear, the sadness, the horror that is not pictured anywhere, not reflected at all, except in the eyes of the other young women I know, who speak the language of chemo and hormone status and nausea.

Maybe the first writer, Emma, and her husband desperately need to convince themselves that what is happening to Lisa won’t happen to Emma.

The other day, I met a young woman with metastatic breast cancer. She’s the first person I’ve met who has metastatic breast cancer. We both attended a yoga class for young adults with cancer. She’s just like me. We were born the same year. She has a job and a fiance and dreams. And metastatic breast cancer.

I’m certain my eyes were wide. Inside, I gasped. My stomach churned. I desperately wanted to believe it wasn’t true, couldn’t be, impossible. I hoped it was a garish, ugly cancer joke. I would have done anything to make it not real, this young woman, standing in front of me, chatting about hormone status and chemo hats and oh- metastatic breast cancer. Anything. But there she was, with me, on the same road as me, attending the same yoga class as me. Nothing is permanent. Not her, not me, not the yoga class we attended. And so we sat and talked in that comfortable room with the high ceilings and drank tea, and there was nowhere to go.

I think Lisa Adam’s social media presence and the flurry around it should be a wake-up call. I think it should jar us out of the la-la land. I think it should make us think what might happen if we took her seriously, if we stared the stats in the face, if we got really up close and personal with death.

I’m afraid, though, that like so often on social media, the flurry will pass, and we will move on because we liked, shared, commented, participated. And Lisa Adams will still have metastatic breast cancer, and chemotherapy still won’t work very well for lots of people, and I will keep meeting young women with cancer, and some of them will have metastatic breast cancer. I don’t want it to pass. I want the flurry to come with us into the future. I want the flurry to grow. I want the flurry to be angry. I want the flurry to scream and shout and writhe and be black and ugly and angry. I don’t want it to be just a flurry of feeling. I want it to be a storm that doesn’t end until we actually deal with breast cancer. And all the other cancers. Then the flurry can die down, when there is no more cancer.