re-organizing

When I was diagnosed with cancer, I read. I read articles and books and blogs. I printed results and statistics and I filed them in a binder with color coded tabs. My friend Ariana started joking that when I googled young adult cancer all the links were purple. You know what that means, right? That I’d read everything. All the links. Purple. Very early on, I knew there was something really obvious, really glaring, and really wonky going on. I knew that young adults were missing from the scholarly conversation, and I knew our perspective was important and would shift the conversation. I knew I would write about young adult cancer.

As my treatment wore on, I grew to hate cancer. I swore I’d never write academically on cancer. I despised writing on cancer. And then the treatment wore me down even more, and I started googling. I started reading again. All the links were purple, again. Except this time, I was thinking about young adult cancer as a scholarly project, I was wondering about the digital objects of young adult cancer, I was gathering resources for a literature review, I was starting to think myself as a young adult cancer scholar. I had questions, big ones, about the mobilization of cancer knowledge, digital literacy, and generationality. I had big things to say, unwieldy opinions and a lot of disagreements with the existent cancer scholarship.

Tonight, though, I know I can’t pursue this line of research. Even though it builds kind of perfectly on my work in digital literacies, even though I am acutely aware of the lack of scholarship on young people and cancer, even though my whole heart is in this project, I can’t do it. I need to step away. I need to not allow cancer’s tentacles to reach into my academic life. I need to continue being the scholar I always would have been: one concerned with youth, transnational organizing, global movements, digital literacies, video production. It may be that someday, that scholar became invested in cancer, and it may be that someday, I will do a cancer project. But for now, I have to be real about the risks.

The cancer project is too risky. I’m a junior scholar. I’m on the job market. I don’t want to be misunderstood or misread, and I want to move forward as an academic with my best foot forward. I would go ahead and say, with total certainty, that the foot I want to step forward into academia with is not the same foot that turned swollen and red and covered in hives from the chemo. And yet, if I do the cancer project, I bring with me that swollen, hive-ridden chemo foot. I bring with me the fake boob and the ache in my ribs from my hormone therapy. When I walk into the cancer agency, I transform into someone else entirely- a patient. When I walk into academia, I don’t want to be a patient and I certainly don’t want to be treated like one. And sure, we all do academic work that is informed by our own intersectional identities, but people are weird around cancer. I don’t need to risk any weirdness.

Besides, my entire life isn’t academe. I’m multi-dimensional. I will continue to be involved in the young adult cancer community, and I won’t worry about how that involvement makes me more or less credible as a scholar. I will continue to make art and music videos and things, and I will share them because it’s important to me without worrying if someone will find my digital objects and confuse them with my scholarship. And so. It’s sad to move away from a project that I think the world needs so badly. It’s sad to realize I can’t have it all, and I can’t do it all, I can’t be it all. But other things are waiting.

So it’s time to re-organize. Rethink. Reimagine. Or maybe, just get a little closer to who I was before I knew I had cancer, maybe just get a little more of that girl back, maybe find a few more of the threads that were torn from the way I was sewing my life together, maybe arrange the patchwork so it looks like I think it might have, without the cancer catastrophe. And maybe that’s what healing is, after all.

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Breast Cancer Pink: The Video! We are FUNDRAISING!

So, our fundraiser is live. As you know if you read this blog with any regularity, I recently wrote a song about breast cancer with a friend who happens to be a singer-songwriter. We recorded the song in the studio, I am madly in love with it, and we WANT TO MAKE A MUSIC VIDEO! Check out our project here to read about the whole story, and donate whatever spare change or extra bills you can! We would absolutely love your help- big and small- in making this happen.

(The Kickstarter is linked above. Here is the link for you to copy and paste: https://www.kickstarter.com/projects/1864457835/breast-cancer-pink-the-music-video)

A friend’s diagnosis

Imagine me saying “You know, I just thought you shaved your head. I mean, hehheh, your parents are hippies and everything.” That’s what my childhood BFF Rebecca said, yesterday when we talked on the phone for the first time in over a decade, as she reflected on having seen me bald without knowing I had cancer (I know there’s others of you out there, who assumed I’d just shaved my head bald….). She said it, but I could have said it. If I had said it, I would have placed the hehheh exactly as she had, and I would have used the same up turn  at the end of the sentence. Because you see, we sound exactly alike. Apparently, during all those years that were pretty much just an ongoing sleepover at each others’ homes, we developed identical speech patterns. Or so we discovered, twenty years after the fact. It was uncanny. In her words, “I feel like I’m talking to myself.”

We were talking because 24 hours earlier, another close friend from those years was diagnosed with cancer. How weird, right? I kind of thought everyone connected to me was safe, like I took one for the team and the statistics would just never allow for someone I know to also get cancer at this age. But, as a cancer friend once said, “Haven’t you learned we’re not statistics yet?” And so, here we found ourselves, on the phone after all this time, though she sounded exactly the same as she did on the phone twenty years ago. Which must also be how I sounded, and how I sound. But more to the point- we have someone else to support. Someone else, young, body contaminated, facing stats and scary surgeries and the dreadful chemo. And so we lapsed into our old patterns, into conversation that could only be described as the most familiar.

I am so heartbroken for the other friend, D. Rebecca is so speechless. She will make it through, but D will be lonely. Lonely. Cancer is lonely, I explained to the childhood BFF. No one understands, no one we know has had cancer (except, of course, me) and no one knows what to do. And as we talked about being alone and being lonely, about getting the other friend wigs, about how f*cked the environment is, about how our parents are just as weird as ever, about that one camp counsellor who turned us vegetarians as children, about cancer-lonely, I realized. I realized cancer sometimes has to be alone. I realized there are people, like Rebecca, making plans to visit the other friend and who care with all their hearts and souls, people like Rebka who would literally do anything to wipe it away, but still. Still, cancer is lonely, because there is no way to wipe it away. It is writing on the wall, writing with a permanent marker that can’t even be scrubbed off with sandpaper.

D is at the very beginning, the time when the words roll around in the mouth like they don’t belong, so big and awkward that they are unspeakable. Rebecca will love on her, I am sure of it. I will stay in touch. A childhood friend, turned cancer buddy. But I know, things will wane. D will get through treatment, and the meal train can’t go on forever. The visits can’t go on forever. Friends cannot support forever. They will get D through this chaos, this madness, this challenge. They will make sure she has chemo buddies and movies and meals. I know because Rebka told me so, in the same voice I would have told you so, and that voice is so close to my own I can do nothing but trust it. How fortunate I feel to have reconnected with this wondrous person, this person I spent most of my childhood with, this person who sounds just like me, this person who now must be protected from cancer, now that both her childhood friends have been diagnosed so young. But I also know, that this won’t be over for D when her hair starts to grow back soft and fuzzy, and I know it won’t be over when she returns to work, and I know it won’t be over when everyone else is breathing a sigh of relief because it’s over.

It likely seems pessimistic to you, reading this. But it’s real, the loneliness that is cancer, the solitude that is the aftermath, the heartfelt sadness and the physical pain that lingers are real. I know that afterwards, when she is looking aghast at the life that has crumbled, that the friends will be tired. They will want to keep giving, but at some point, they will be tired. And they will need to step away to nourish their own bodies and souls and spirits, and by definition cancer does not nourish, cancer taketh. And then D will be there, alone as she really is even when they’re there, and the din of distraction will wane. And that is cancer. D cannot step away. She can’t opt out of the heartache or the doctors appointments or the lingering side effects. I cat yet tell her this story, but that is why my heart is broken for her. That is why my eyes fill with tears for her. It is terrible to endure the treatment, of course. It is the worst when hair falls out, when skin turns dry, when the body aches. And the enduring solitude is expansive, even as the body heals.

Tomorrow afternoon, I’m going to go down to the beach, where the water meets the forrest. I’m going to sit and think of D, and I’m going to ask the earth to take care of her, and I’m going to hope she feels the ways we are interconnected. Because, we must. We have friends, the best of friends, but they can only accompany, and they can only sometimes witness. We cherish them when they do, especially those old friends like Rebka who can pick up the phone and ask all the hard questions, and who can really listen and feel our responses. And sometimes we must be alone, sometimes there are no witnesses, sometimes we must be where the ocean meets the forest and where ultimately, we can heal.

heartbreak

Today is a day to be heartbroken. Last night, an online friend died of breast cancer. She was twenty-six years old. Let that sink in. Twenty-six years old, twenty-six years old, twenty-six years old. Three years ago she was diagnosed with stage 2 ER+ breast cancer, and last night, she left this world. It seems like only yesterday that she learned of her cancer metastasis. In fact, it was only in November. It’s barely February. In four months, she went from being a twenty-somethign who’d had the worst luck with young breast cancer to dying from breast cancer. Four months. And she was twenty-six. And so sweet. She reached out to me after my diagnosis, she comforted me, she introduced me to the other young women.

Today is a day to be heartbroken. This morning, an old friend- one with whom I haven’t talked in decades but with whom I shared those very early, formative, childhood years announced on Facebook that she was in a health crisis. I reached out to her, as Caroline had reached out to me. She is in the grips of terror. Of unknowing. Of cancer-possibility. I hope with all my heart that her surgery went well and revealed no cancer. And though we haven’t spoken in years, if I was closer I’d show up with arms wide open for a hug and a cooler full of comfort food for her and her family.

In the context of our conversation, she said we were kinship friends. That it didn’t matter how long we went without speaking, that those years of chlorine-green hair and swim meets and hopping across hot black pavement, warmed by the California sun, to the swimming pool won’t ever fade. And she’s right, you know. It’s not that anyone who posts about health crisis elicits from me an emotional reach-out and whole facebook-chat. It’s that those people who’s lives are always and forever tied up with who I am- those people who have been forces in my life at critical moments, like those childhood summers, are indeed, kinship friends. She’s one of them. She’s part of that tribe. I’ve moved across the world and fallen in love with feminist theory and no longer really think of myself as part of that suburban world we grew up in. And yet, you just can’t shake those growing up relationships. And nor would I want to. They’re my tribe. Broken and far away and fallen out of touch, they’re still my tribe. And when one of them is hurting, it reverberates. It brings tears to my eyes because I know how f*cked cancer is and I’d rather sever a limb- or another breast! (cancer joke. sorry black humour)- to save her from knowing how f*cked it is, too. Sadly, I can’t trade a limp, cut-off boob for her health, but I can send all the positive love vibes and hope to all the goddesses there ever were that she is just fine and healthy, that this is a nightmare who’s next chapter involves waking up and discovering that the world is right again.

So today, I am heartbroken. I am heartbroken for Caroline, for the way cancer rips brilliant young women from the world. I am heartbroken that we will never know her continued brilliance. I am immensely proud to have called Caroline an online cancer buddy. But I am heartbroken. I know more than ever, that The Song (Breast Cancer Pink) and the video and my scholarly project on young women with breast cancer is imminent, urgent, and necessary. I must move forward, holding Caroline’s sweet concern over my diagnosis close to my heart.

I am heartbroken because the members of my childhood tribe are hurting. I am here, people. I love you. I am fighting for you. I will listen to you. I care about you. Besides, she was right: we are kinship friends. Forever friends, bonded by screaming swim team cheers and avoiding the many mothers trying to slather us with sunscreen. We yelled… “I-I-I like us…. nobody’s like us…. We are the kids from PhD!” And it’s true! We ARE the kids from PhD, in grown up bodies. And nobody’s like us. A tribe unto ourselves, and I like us. Now let’s just get all our people through these medical nightmares, and let’s do something about the horrible chemicals causing cancer in our young bodies.

Tell your kinship friends. They might be swim team buddies, neighbourhood friends, kids who lived down the street, your elementary cohort. You probably haven’t spoken to many of them in years, but there is still an intimacy. You probably know their families and can name their siblings. Tell your kinship friends you love them, tell them you’d fight for them, tell them they’re in your thoughts. And keep all your fingers and toes crossed my dolfins (yes, that’s spelled correctly) are all alright. “Hey you over there on the other side…. we’ve got something called dolfin pride!” Love to you all, and to your kinship friends and families. Love.

black & white

My mother has oft accused me of being too black and white. It’s true, I like an answer. I like information. I like decisions that make sense and that feel right. I especially like being right, and I don’t like to waffle. I like being right even when there’s grey areas, but I like having enough grey areas stacked on top of each other such that they look black and therefore, a decision can be right or wrong, good or bad, simple or complex. I like clarity, control, and information. I want all the information, and I want it now, and I want to be in control of my decisions, and sometimes I like to be in control of other peoples’ decisions, too. When I was a girl they called me bossy. I am a first born child, and I like it that way.

When I had cancer, my life was littered with decisions. Life in general involves a lot of decisions. What to eat for breakfast, whether to go to that party that offers networking possibilities but will probably be totally boring, which picture to post on your Skype account. But suddenly, the kinds of decisions I was making were about life and death, hair loss and fertility, futures that no longer seemed so stable So I printed out articles and colour coded them. I talked to all the young adult cancer patients. I found support groups and I attended information sessions and I read everything I could get my hands on. I asked everyone I knew what their opinion was, and categorized peoples’ ideas. I poured over statistics, I studied patterns, I brought highlighted articles to appointments. And yet, sometimes it helped none. Mostly, nothing was black and white and instead of gathering all the information from any source ever, I had to turn inward and decide for myself. By myself.

I think the biggest decision I’ve ever made was to have a mastectomy. It was perhaps also the decision that, more than any other decision, could only be made by me. And with my mastectomy, I realized all the opinions in the world, all the statistics and recommendations and book chapters didn’t matter. Most of the people whose opinion I was seeking out had no way to think in any kind of embodied way about my decision. You can’t imagine yourself in a body you’ve never been in, nor can you imagine a decision you might have to make if you’ve never had to make it. It’s just not possible. And with the mastectomy, that became crystal clear. For perhaps the first time, I had to get really clear on what I thought, on what I wanted. For the first time, as I spent hours discussing the pros and cons with my cancer-friends on the verge of the same decision, I realized there is no right answer. No book with a map. Nothing to get wrong. No right way to fill in the bubbles or argue the theory. No test. For each of us, there was a different answer. Our cancers, even when they are all in our breasts or all the same stage are all really different, as are our bodies, our oncologists, and our futures. I could listen. I could hear in each story a different truth, a different decision, a different need. I could listen, but I knew I couldn’t compare. I knew I couldn’t follow. I knew I had to decide.

The whole no right answers proposition is unnerving to me. Certainly, I have never been good at following rules or instructions or even recipes, but I like to know what they are, so then I can rationalize my un-following. I like to know theories, and I like to know what people did before, and I like to follow my heart, especially when it’s backed up with data. But sometimes its hard to know, when things are uncertain and cloudy and new, and sometimes its hard to know when things are certain and clear and ancient, too, what to do, how to feel, when to decide. And so it goes at present, with the music video.

You see, we’ve made a music video. We want to fundraise money to make a real music video, for the song Breast Cancer Pink. And in our fund raising video, my bald head, my broken tits, my totally cancer-y body is featured right front and centre. It’s vulnerable. I’ve asked people- will this ruin my academic career? I’ve asked people- will this make people think weird things? I’ve asked people- will this make others say stupid shit? I’ve asked people- is this stupid? I’ve researched- tending to blogs, reading others public experiences, consulting the experts. But in the end, I’ve only got my gut. I wish my gut was better at explaining, but my gut says, in black and white, do it. Post the video. You can’t be a closeted former cancer patient. There’s no use in hiding. So I suppose the body guides us in black and white sometimes. I think we need sometimes to get out of the brain, stop research, stop talking, stop gathering. We need to enbrain our bodies, and listen to our guts and our hearts and the feeling in our throats. And I love this video. I want to post it. I want to make the music video. So keep an eye out.

Besides, my mother who thinks I think in shades too black and too white approves of the public posting of the video. So there. But gosh, do I wish there was a right answer, so that if anyone were to say anything, I could say…. “But I got the right answer. Can’t you see?”

But that is life I suppose. Life and decisions and black and white and grey, and not knowing and trying and guessing and gathering all the information, colour coding it with post-its and producing a bibliography in APA style… before realizing it matters naught. All that matters, at the end of the day, is the feeling in my gut, and whether or not I can stand on my own two feet and look myself in the eye and know, this is right and it is right for me, for now. Oh life.