a year ago today

A year ago today, I was getting my nails done in what was perhaps the worst fake-nail-manicure ever. A year ago today, it didn’t matter that my nails looked ridiculous because all of my friends and family were stringing papel picado and tying sheets in octagonal formations to drape over sun umbrellas and arranging benches borrowed from a nearby church in rows under the trees. A year ago today, I knew only one person who had had breast cancer. A year ago today, I was more concerned about the cleavage in my wedding dress than the scars snaking across my chest. A year ago today, Mexico’s shot at the World Cup hadn’t been stolen yet, and I was balancing cucumbers on my eyes under the strict instruction of the girl about to do my make-up. A year ago today was before cancer, it was just another day, it was our wedding day.

The person who stood with me under a make-shift altar in El Vado, a year ago today, is the best person I could ever ask to spend my life with. He’s kind and musical and passionate and even. A few months ago, we settled into the chemo room and he complained that I got us both salads from Whole Foods for lunch and he hates salads– he certainly didn’t let the cancer phase his disdain for fresh greens, and he kept things normal by making his disgust known. During those sick times, he bought me bunches of organic grapes- one of the only foods I could actually stomach- and didn’t even roll his eyes at the double-digit price for organic grapes in February. When the going gets rough, he gathers me in his arms and snuggles up close, enveloping me in the safest of all spaces.

“In sickness and in health.” It just means something different now, something we never could have expected or imagined. Certainly, the cancer was rapidly dividing as we danced that evening, but we were utterly, entirely clueless. And because we were so clueless, there was a kind of bliss, a sheer energy that seemed like it could never be penetrated, a wildly certain hopefulness that included a life full of wonder. It’s not that we specifically wished to not have cancer, it’s that we didn’t even know to wish we didn’t have cancer. That was not even on the radar a little bit. Why should it have been? There was no reason.

Or maybe there was. Two years ago, I finished defending my comprehensive exams and was preparing to go to Nicaragua to galavant with my friend K and set up the AMIGOS Boaco project. I thought I’d been bitten by a spider, and there was a giant and swollen bite on (I think) my left breast. I flew to Managua the next morning, and the swollen bite proceeded to worsen, turning colors and filling with puss. After a youth encuentro, I took myself to the Doctor I always used for volunteers in Teustepe, and she lanced the swollen red bite, and flooding out came gross, warm, yellow-ish puss. She thought perhaps it was a bit, but she said it looked more like a very infected in-grown hair. She prescribed antibiotics, and told me to come back for more puss-squeezing the next day. You don’t want to hear these details, but I’m sharing them anyway. Before the wound healed and the infection cleared up, we took to calling this giant boob-owie my “triple nipple.” “How’s the triple nipple,” K would ask when we woke up under our mosquito nets and as we rode in the back of the truck to visit communities. Soon enough, though, it healed. It became something we laughed about- “Oh, remember that time you had a triple nipple and…”and the triple nipple story was woven into our Nica narrative. It fit right in next to scorpion bites and youth encuentros and how tired we were of eating at the only restaurant in Teustepe. But now I wonder. In retrospect, I wonder if this was connected. Was my body trying to tell me something, two years ago? Certainly I already had the cancer. Was it exploding through my skin, begging for attention? Should I have seen another doctor? Should I have thought twice about the proposition of an ingrown hair on my generally hairless breasts? I’m certainly thinking about it now, even though my oncologist has assured me “we will never know.” As if that’s a good enough answer.

So when we wed, and when we promised to love each other “in sickness and in health,” we had no idea what was to come. But in retrospect, maybe there was an inkling. So often, the pieces don’t fall together until after the fact. So often when we make life-long promises like “in sickness and in health” we have no real way to understand what we are promising. And should we? We march blindly forward together, blithely unaware of what we are promising, hopelessly uninformed about how our lives will develop. So what if we had known? Would we still have promised? If we had known, would we have been able to do anything with this information, would we have even been able to understand this information? Like whether the triple nipple incident was related to the cancer lump, we will never know.

We cannot know backwards, knowing what we know now. What we can do is know solidly, that in our decisions and commitments and promises there is always an unknown hovering, a precariousness about even that which we believe in so solidly, about even that which we take for granted, about even that for which we can conceptualize an other. The world is full of unknowing. Some things can only be known after the fact, when the moments that feel disparate can be seen from a distance. There is a trajectory, a linking, a way of knowing that we can only see from where we stand. And of course, when we make promises like “in sickness and in health” there’s no way of knowing how “in sickness and in health” feels, unless and until, we find ourselves swimming through those words. We are swimming through them, finding a new normal, caring for each other from a perspective we never knew was possible. In sickness and in health. So did we know? No. Could we have known? We’ll never know. We cannot know, if we could have known.

And so instead, we cuddle and celebrate. A year ago today, we stayed up all night swimming and drinking margaritas that were mostly tequila with only a droplet of lemon juice. A year ago today, he promised to each artichokes with me and I promised to pat out roundish tortillas for him. A year ago today, we got to do something so fun, so meaningful, so awesome that it still feels exciting and hopeful and incredible when I think about it. A year ago today, we got to have a giant party with all the people we love.

And what a year its been.

 

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..

 

 

 

 

 

communication

Communication. What a loaded word. We think it means conversations, feedback, truth-telling, pillow talk, peer support. We draw on our mother-tongues and our second languages, our eyes and our bodies and our gestures, our desire to be understood and our tendency to shelter the most tender worries.

Enter cancer, and it gets even more complicated. Did you know that young couples who deal with cancer have a much higher tendency to head toward cancer-induced break-ups? I mean, its no wonder. After all, who prepares young couples to communicate and navigate life challenges? And what kind of challenge have two young people in love ever faced that might parallel cancer? Right, none. I mean, take me and Sammy: we were together for many years- nearly a decade, during which time we built a shit-ton of communication skills, but we still got married and then got cancer. Well, not exactly. We got married and found The Lump within six weeks of each other. Because my path to cancer diagnosis was marred with multiple misdiagnoses (the case for very many young adults) that included assurances of “it’s definitely not cancer” at physical exam, ultrasound, mammogram and biopsy (I should quote the radiologist who said, “I’d fall out of my chair if this was cancer.” I wonder if she fell out of her chair), the time lapse between wedding and cancer diagnosis was sixteen weeks and two days, exactly. But remember, ten weeks and two days of those sixteen weeks were spent wondering why no one was taking us seriously and buffing up on research so as to convince our doctors we needed more investigation, more tests, and more knowledge in the face of what only we thought (at that point) seemed like a misdiagnosis, or at least, one that needed more back-up.

Needless to say, we spent most of the first year of our marriage sifting through breast cancer research, treatment, and side effects. We dealt with chemo and life-or-death decisions on a daily basis. As we wrote wedding thank you notes, we had conversations about Sammy being a widow and about how far we were willing to go to prolong life and about how much ice cream we would eat in the face of a terminal diagnosis. We sorted wedding pictures as the chemotherapy nurse looked on and inquired about bridesmaid color schemes. We picked up my cleaned wedding dress on the way home from my first oncology appointment, and on the ride home we debated the costs of naturopathic treatment.

And we did it all in two languages, in the gray space where Spanish and English slip into each other, in the space where the words tumble together and forget which mother tongue they came from. And we still love each other. So I think we are exceptionally qualified to say a little something about communication. I think our communication skills saved us. I think our two-language vocabularly, our two-language sensibility, our ability to slip between our two languages and to make new words from the best of both languages saved us. I don’t think, though, that you need two languages to survive. I just think we had exceptionally creative language skills because of our two languages. There’s other ways to build exceptionally creative language skills.

You see, when the person you co-habitate with is both the other half of your orange (mi media naranja!) and your better half (mi mejor lado!) there’s two ways to think about who you are. All orange-halves need other orange-halves to be orange-wholes, and what if you don’t want to give the other half credit for being better? What if the other half is in fact, being your worst half at the moment? Then it’s damn good you have the metaphors of another language to draw on! In all seriousness, really. Maybe you’re not so worried about this language and way of thinking about your orange half or your better or worse half, but it’s just an example. Extrapolate. In a much tenser, more radical moment, we’ve got two languages, two sets of metaphors, two cultural reference points.

And of course. Because there are two sets of metaphors, two languages, two cultural reference points, we are used to complete and total misunderstanding. Once, when we were driving over the mountains from Sam’s folks home on the coast of Veracruz to Xalapa, where we lived, I sat in the front seat. Sam’s mother and cousin sat in the back, and Sam drove. The fog was atrocious, the kind that requires you to open your door to make sure you’re driving along the dotted yellow line, but there’s not yellow line dotting the road over the mountains from the coast to Xalapa. And so Sam, driving through the dense, dense, fog, said to me, “Hechame aguas!” as we backed up on the empty road. Now, “Hechame aguas” means “Throw water on me” literally. And so I started looking around for a water bottle and asked why he wanted to be all wet when we had a two hour drive ahead. Clearly, I was totally misunderstanding! “Hechame aguas” was a call for me to help him navigate the road, to be an extra set of eyes, to watch out for him, with him. After some laughter that produced tears and belly-aches, we all realized I had just mistaken “hechame aguas” to mean something it didn’t, and Sammy had assumed I knew how to interpret the cultural reference. That, folks, is pretty much the everyday reality of life with someone who doesn’t share your mother tongue or country of citizenship.

But we learned. We learned to anticipate when references would take on new meaning, we learned to laugh at jokes that lose meaning when translated because we could quickly translate them back and grasp the meaning, we learned to re-explain, re-visit, and to revel in mis/understanding, whether the conversation was about throwing water at the car driver or what to make for dinner or how we wanted to die. I think that approaching each conversation knowing that it could quickly slide down the slippery slope of misunderstanding- and being able to blame mis/understanding on language- has given us the tools to communicate like only other bilingual couples know. These tools foreground, always, and humorously, the real threat of radical misinterpretation. And so we know we must re-explain. We must tell stories. We must use verbs from the other language. We must let our tongues get used to telling in the other language.  We must draw parallels to explain ourselves, and use metaphors grounded in a culture we had never heard of us small children. We are constantly translating, thinking about how words sound in another language, noting how meaning shifts changes, deciding when to shift into English or Spanish or Spanglish. So we learned. We learned to communicate knowing full-well how often we would misinterpret, and we learned to delight in the un/knowing between languages, to find magic in making new words and finding feelings only one language had a word to articulate. We learned to communicate.

And so when cancer came a-knocking, we continued down the same path. We used the same creative assemblage of language and feeling and body movements. We quickly discovered that if the terrain of misunderstanding in our everyday was slippery, then the terrain of cancer was like the side of a grassy, muddy mountain topped with mounds of warm, slippery butter. We knew we were bound to mis/understand.

I think this is key. We knew we would misunderstand.

How often is it, that we pout in the corner or cut of a friendship or cry in the bathroom because we were misunderstood? Misunderstanding, and especially misunderstanding that feigns understanding hurts. Like bad. Real bad. Isn’t that why I recoil at the platitudes people offer in the face of cancer like “Be positive?” “Be positive” grinds at me because it denies my experience that is everything but positive. “Be positive” totally and completely misunderstands what I am feeling. On the other hand, acknowledgement of misunderstanding in the face of total confusion is comforting, quieting. It screams, I cannot understand, and I want to, but I cannot, and these languages we have at our disposal to make understanding possible are as inadequate as the mammogram that read my cancerous lump as naught. That acknowledgement is not insignificant- it’s just the opposite. It’s monumental. It calms me so much to know someone who cannot know is not trying to steal away and warp and re/present oddly, off-handedly my testimony, my experience. Because the key feature of that experience? It’s mine. And I want you to pay heed to that, respect that, handle it carefully. I’d rather misunderstanding than appropriation of my experience touted as “understanding.”

So I urge you to delve into mis/understanding. To stare at the eyeballs of people you love and know that as hard as you stare, as deeply as you sink into their experience, understanding is just a slippery, wet, muddy slope doused in warm butter. It’s impossible to climb up, and so instead we might revel in the slipper slide down. And we can talk about it, and throw words into the air, and grab what we can of the others’ words, and we can use them to ground ourselves for a moment, like grabbing onto tufts of grass peeping out hear and there, but soon enough the roots of those tufts of grass will pull from the muddy ground, and again we will be sliding.

It’s not to say that understanding is hopeless, or that we shouldn’t spend the moments before our eyes close fighting to stay awake and understand our loved ones’ pillow talk. It’s not to say we can’t listen to people different than us, and it’s not to diminish the radical act of witnessing the lives and experiences of those around us. It’s not to say we can’t be jarred out of boredom by stories we’ve never heard before, and it’s not to say we can’t learn to love people who’s lived experiences of the world don’t overlap with our own even a little.

Mostly, it’s to say we can love each other when we don’t understand. It’s to say there’s a certain freedom and a deep (ondo is the word I really wanted to use, because it sounds more like the color of the bottom few inches of the center of a lake, just before you get to the sand) respect in witnessing without trying to stand in the others’ shoes, a respect in standing in your own shoes and knowing you cannot ever stand in someone else’s shoes. It’s to say how cool, to stop trying to understand, and simply start listening. It’s to say, what power in listening, without needing to understand experience by appropriating it, but rather, what power in listening while only listening, while only feeling, while only being and knowing we might be sliding down the slope of mis/understanding.

So that’s what we do, in our own little nudo de amor, when we talk about cancer. I don’t understand what its like to watch your media naranja get cancer, fight chemo, cry because she misses yoga, or use up all the printer ink on breast cancer articles. He doesn’t understand what its like to feel incensed because all the women in my exercise study are two decades older and tell me they’re “young at heart,” and he doesn’t understand what its like to wake up in terror that I forgot to take a medication, or to be so divorced from the brick on my chest I can’t really call it my own (fake) breast. But that is ok, because we got a nudo de amor, and inside of it, we can throw rational understanding to the wind and instead, revel together in the slippery slide of mis/understanding.

party in my body

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

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

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

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

It feels like a party in my body.

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

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

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

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

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

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

 

 

 

 

Oh, hello, wigs.

I have not worn wigs in weeks. Months. I decided bald felt more like me, it felt more honest, it just felt better, to leave the wigs hanging in my bedroom. I developed fanciful ways of responding to the inevitable comments about my baldness. Sometimes I tell people who ask why I’m bald that I was electrocuted and it burned my hair off my head. I get asked all the time. I told one person who asked I was doing an experiment to see how people responded to bald women in public places and that her (insensitive, uninformed) response would help me with my research.  She said I didn’t have her consent. I said she didn’t have my consent to ask me questions about my bald head. The comments which prompt these responses range from, “So, did you do that to yourself on purpose?” in the line for coffee, to Facebook messages from people I have not talked to in over five years that read “I was wondering if you chose to be bald, and if not, please let me know what’s going on,” to various and very plentiful comments about the supposedly pleasing shape of my head.

Being bald invites cancer comments too, and like the bald comments they vary widely. Yesterday, a doctor (yes, a doctor) said to me, “So what do you think is causing all this young breast cancer, it’s probably caused by excessive caffeine and alcohol.” Don’t worry, I jumped all over him about plastics, toxins, victim-blaming, and misinformed research and he stumbled around when he realized what an ass he was. Someone the other day told me I needed to consume copious amounts of banana and tomato to ward of cancer cells, and an acquaintance recently asked me to recount my stress levels over the last decade to see if there were any links between my stress and my cancer.

That’s barely the tip of the iceberg.

People always act surprised and horrified when I tell them about this, and I’ve started to wonder why. I think we need to get out of the land of make-believe and function in reality, where this happens, multiple times a day, every day. Surprise that someone would ever say some of these things only functions to continue to allow people to refuse to know what it is like living with and after cancer. Surprise is a-political. It keeps things as they are- because how could that happen? Easily, people, easily. We cannot afford to be surprised.

I get at least two or three of these malignant comments every day. Like today, at yoga, a woman changing next to me said, “Are you injured? I noticed you were not using your arm very often.” I shrugged and said, “Nope, I just had a mastectomy.” And she said “Oh, it looks beautiful.” (What the f*ck?!?! What looks beautiful- my breast? Why are you staring at my breasts? The only people allowed to judge how it looks are me, my hubby, and my plastic surgeon- and you are not one of those people. Or are you saying it’s beautiful because you assume I had reconstruction and you can’t tell? Just stop talking already). But no- she went on. “I am a nurse and I didn’t know that was an indication. Is it forever?” By now I’m like dude, I don’t want to discuss my medical history, even if you are a nurse, which makes me think you should know not to ask these questions, so I shrugged and said, annoyed, “Uh, as I said, I just had a very major surgery.” And then I turned on my heal and fitted my wig to my head.

I fitted that wig to my head because I am worn down. I am tired of these comments. I am tired of answering questions. I do not want to discuss this with the grocer and the man on the corner and the colleague teaching the same class as me who constantly asks me if I’m OK. The wigs are a protective barrier. When I wear a wig, people don’t assume cancer -even though I now have a centimeter or so of hair- and even the people who know me and know I’m bald under the wig seem less likely to invade my space with questions and comments and magic cancer-curing powders (yes that happened).

And so I broke out the wigs. I had the long redhead one washed and styled. I’m tired. I’m too tired to rehash this with everyone. I’m too tired to explain to you why your cancer-camp in Costa Rica will not cure me, and I’m too tired to listen to your stories about this person you know who just started chemo or that person who died of cancer or this other person who saw a movie about cancer.

I’m just done. I don’t want to talk to you about cancer, especially not mine, unless you either really get it (read: you had cancer) or you have something really smart and political to say, or you are one of the very elite crew who deals with my cancer on a daily basis and I’ve invited you in already and you’ve seen it all.

I am done being your friendly cancer curiosity. I am tired of explaining away your misinformed ideas. I want my hair to be long enough to look like me. I want to feel like me. I want my hair to be the same strawberry blonde-ish it always has been, not this ashy blond that’s covering my head in soft, dewey hair. I want to feel like me, and even though many people tell me they don’t like the redheaded wig much, it is the one I feel the most like me without cancer in, and right now, I need to feel like me without cancer.

I need to convince the people around me that I’m healthy, and perhaps, if I can convince them, I can trust my body enough to believe that in fact, I am healthy. If I have to wear wigs until my hair is long enough to pass as healthy when I look in my bathroom mirror every morning, I’ll do it. Fine.

Breaking out the wigs. Ready, go. Hurry up, hair.

transitions

I’m not fond of transitions. I don’t like goodbyes, I like beginnings. I like the moment before a significant experience, the moment you jump with both feet into something new and meaty and full of possibility. I don’t like the moments before the moment when you jump, the time spent figuring out which way to jump or where to go or what’s next. And I certainly don’t like the moment where you pull yourself out of an experience and look behind you and say, well, that’s over. Of course, I’ve been looking forward to saying, “well, that’s over,” about cancer for so long now. I’m pulling myself out of this cancer but my body is so warped from swimming in the cancer-pool that I need to learn how to be in the world again.

Here I am, finding myself in the midst of a cancer-transition. I jumped into treatment terrified, but relieved to be surrounded by competent medical professionals and comforted  knowing that the cancer center a five minute bike ride from my apartment is state of the art.  Certainly, I still have treatment ahead of me- surgeries and hormone therapies and scans. But the chemotherapy is done. The most traumatic surgery went off with only a few hitches. And my hair is now half as long as my pinky fingernail, which is transition on two counts: both my hair and my nails are growing. That’s a step up from where we were a few months ago.

You know what’s weird right now? I miss my doctors. Badly. You see, when you pull yourself out of the most intensive part of cancer treatment, you vow never to take steroids again, like ever, but then you realize that those steroids were tied to seeing this phenomenal and cancer-destroying team. The oncologists probably tie the significant others of cancer patients for the people who most deeply understand what its like having cancer without actually having cancer. The cancer-doctors are the ones who deal directly with the magnitude of your cancer, they address the hardest parts, they say what few others can articulate, and they wage a battle in your body against that which is trying to kill you. Its no wonder we start to cling to them, the people who can tell us what our life and death chances are and can give us a plan to improve those odds. I was seeing them every single week, multiple times a week. The nurses were checking in about my writing and making guesses about which wig I’d be wearing. And now suddenly and without warning, I am only seeing them once or twice a month. Still way more doctors appointments than I’ve ever had before, but enough space in between them to need to look at my calender to know when my next appointment is. Doctors are comforting, especially in the face of cancer. They are doing something. The are fixing something. They are actively engaged in making you better. And so it follows that there is some separation anxiety, some wishing I was seeing them more often, a coveted sense of action that I get from their presence. Ah, transitions. Who would have thought this one would come with missing my medical team?

I do not miss the sheer exhaustion from chemo that had me sleeping fifteen hours a day, or the bone pain migrating from my femurs into my shoulders into my wrists. I do not miss only being able to eat frozen grapes and sourdough, and I do not miss the smell of antiseptic swabs cleaning my port. What I do miss is the way that dis/ease mapped onto my body, and the way that that very clear mapping could be dealt with by a team of doctors. The cancer was there and being dealt with in the form of bone pain, chemo, and neuropathy. The medical team was responding with pathology reviews, many bottles of pills, and very frequent appointments. Now, the physical manifestation is the brick on my chest, and the very short hair on my head, but the pain no longer maps onto being unwell, and nor does it correspond with weekly medical check-ins. It is of course the truth that there is little my medical team could do if I were to see them every week these days- they’ve done what they can. But there is a gap between the materiality of what they can do and the way believing something is being done is comforting- and now I must face the reality that they’ve done what they can. What is left behind is residual, invisible, aftermath.

And I am here, trying to get my bearings in a world that feels like its still swirling, trying to reconcile the cheers of “You’re so ok!” from those around me with the disaster zone that I inhabit. I hold dual spaces, contradictory spaces, one that is distraught and enraged and sad beyond words, and the other that you see, where everything is better. And so it goes. Another transition, here we are.

#nevertoooldforrainbownails

That’s right. nails

I got my nails done this morning and made the ladies at the salon giggle when I requested a different color for each nail. Because you know what? That’s actually what I wanted, but the little voice in my head telling me to be “more normal” or “more grownup” or “less obnoxious” or whatever was bargaining for florescent pink with a design, or red and sparkly, but please not five different colors. Well screw that voice. Because really, no one is ever too old for rainbow nails.

My friend A calls that voice the “committee of assholes” that lives in your head. That committee that was planted by capitalism and watered by the patriarchy. That committee sucks. I suppose we all have committees like this, telling us that rainbow nails are childish or that singing in the street is forbidden or that finishing a dissertation is impossible. The committee of assholes isn’t going anywhere fast, and I see the committee spring up in all kinds of spaces. I don’t think I can afford to be surprised anymore, when the committee of assholes shows up and whispers hate. I just have to paint my nails like a rainbow, instead.

I knew I could paint my nails whatever color I desired this morning, because my cousin L does it too. She is always texting me pics of her nails with polka dots and alternating colors and little pictures. And I always love it. We should all aspire to be so brave. Little acts that scream, “Me, world! It’s me!” are just all-around necessary if we’re ever to obliterate the committee of assholes. We all need people who can show us how to do things a little bit better, who can show us one option for making our way through life. Sometimes they show us we can wear whatever color nail polish we feel like. Sometimes they show us how to deal with after-cancer. Sometimes they show us how to answer a question that catches us like a deer in headlights.

The committee of assholes is like, “Oh, but your students won’t think you’re professional if you have rainbow nails,” and “So and so will take you less seriously with rainbow nails” and “Pale pink is a much better color for your nails because it’s sophisticated.” You know what? My students should respect me because we are doing critical literacy and stop motion animation, and if so and so doesn’t take me seriously they can get out of my life, and pale pink is not sophisticated it’s infantilizing. So, I’ll go ahead and cover up my chemo-brown-and-breaking nails with bright colors and I’ll love it. As I watch them typing, I can’t help but smile. That means I def got the right colors.

The people who show us how to be in life are the antidote to the committee of assholes. They are the people who reach out and say, “Hey, dude, I was there. I did this. And now I’m doing something else.” They are the people who say “I have no idea what you’re going through, but I’ll show you where I’m going in life.” We’ve all got committees of assholes telling us all kinds of things, tying our hands behind our backs and attempting to obliterate our belief in our selves. I just hope we always also have people showing us how they’re living their lives, in honest, gritty and surprising ways. And I hope we can always show each other how we’re living our lives in ways that are true to the tears, in love with the laughter, and honest about what’s going on all around us.

Who’s painting their nails in five different, brilliant, bright colors today? It’s a pretty awesome dose of sunshine on a cloudy summer day.