Communities of Writing

[Note: I published this in October 26, but accidentally as a page!]

I’ve been wondering lately if writing isn’t a communal project; if the process of writing isn’t something we inherently do in a group, or an imagined group, or some kind of collective. When I started this blog, it was primarily for myself — and it still very much is a space where I can write about the issues I’m facing in my day to day life — but I’d be foolish to think that it doesn’t reach a larger community or doesn’t affect other people. And when I think about my writing, I do think about how others might receive it or be moved by it or somehow let it bleed into their own writing. Especially when that writing is about illness.

Writing is healing for a number of reasons — it’s a safe outlet for all the messy, not too pleasant contours that come to bear on our lives and etch away at the shapes we thought we had. It helps us process and understand the world around us, makes articulate what we thought was unapproachable. And when we read others’ writing, it reassures us that we’re not alone. It tells us there are others like us who struggle with the same limitations, or similar ones, or dissimilar ones, but still manage to make it out their doors and into the world each day. And I think that’s one of the most precious gifts of writing: that with your random words, you can show your readership — even if it is only yourself — that you made it up and out for another day.

Like yesterday, I walked with just my cane for the first time in over a month.

I had begun to think that I would never walk alone again — in fact, it was looking a lot like that. My left side’s mobility has been a significant problem for some time. Because of one of my brain lesions that’s pressing on my mobility center, I have very little balance and communication between my brain and my left side. In others words, I say “go!” and my body says nothing. I only really have the use of one hand — I type, eat, pick things up, hold things, move things with only the right. I’ve tried to start incorporating the left back into what it can do to keep it limber and moving, but that isn’t much and because my problem is neurological, it isn’t likely to get much better with physical therapy.

Lately though, I started back on steroids again. I hate steroids. They have a whole host of nasty side effects that you don’t get to escape. Irritation, anxiety, sleeplessness, weight gain, abnormal hair growth, depression, apathy — the list goes on. But in the past they were the only factor that had any effect on my mobility and I finally got to the point where I was willing to give them another shot. And, over the last month. they’ve worked.

It’s something a large part of me doesn’t even want to admit. Since being on them is effective, it means I get to stay on them — the reason my mobility went away in the past was because I tried to lower the dosage of my steroids when they were working and that ended in disaster. I don’t know that I’ve learned something here other than something I really should have known before — cancer treatment, a lot of the time, is a series of trade offs and modifications, things you are willing to give up or put down in favor of others. Things you thought you would never give up.

In a lot of ways, it’s easy to see that this set up isn’t fair. And it’s not, and so a lot of my writing today is just recognizing that. When my husband told me the other day that he doesn’t know how I do it, that he would just want to throw things and scream all the time, I told him that’s how I feel a surprising amount of the time. I get irritated with little things that are placeholders for bigger things, or I have less patience at times than I would like to, but I try not to let it define me. I try to remind myself that a lot of these feelings are situational or drug induced, or both, and that taking a deep breath, a step back, a pause in the moment will help me recenter. Usually it does.

But that doesn’t mean it’s not there.

And I think that’s why I started this post off with the notion of community. These things are there, and airing them to a larger public has always helped me process them. Once one of my advisors said I only ever had to share what I wanted to, and I told him that sharing helped me. It brings people into the gold of my community and disperses the blow of what it is I’m struggling with at a particular moment. Like how goddamn frustrating living with one functional hand is. Or how happy I was last night to walk the short distance between my bathroom and the bed.

So I’m happy and willing to share. More importantly, I think finding your own community is crucial to surviving day to day, whether through disaster or just the routine of life. And I think writing is an especially effective means through which to find a community because, in many ways, you can very closely manage the terms of that community and your output. Writing also gives you the time to think, reflect, and process your own words on the page, which can lend greater clarity to the situation at hand. And having others’ eyes on that process may seem scary, but ultimately I think it gives us perspectives we couldn’t get on our own. Hence: communities of writing, or communities that nurture writing as a collective growing process that we all can contribute to and learn from.

I wonder what one of these communities would look like. I’ll try to find out.

I Used to be a Rider

I used to be a rider.

When I took my first lesson at age six, I finished in tears, horrified by how large the horse was, how far I was from the ground. My mum warned me that she had purchased a ten lesson package and I had better take all ten. Molly was technically my first horse at 12, but when I was 14 we bought Taz, who I didn’t have to share and who didn’t take a bizarre pleasure in bucking me off so regularly and dramatically that concussions were a part of everyday life. And Taz taught me everything — he was endlessly forgiving and possessed a work ethic so determined that in the 13 years I owned him I never saw him tired. He also loved pop tarts, rice krispies, and once shook an entire bag of carrots out onto the ground only to keep shaking the empty bag long after the lightened load between his teeth should have cued to him that something was amiss.

He was not smart. He was loyal and honest. We put him down one day after my 27th birthday when a series of strokes suddenly attacked him and made his life too painful to live. He was 30.

Losing Taz felt surreal. He was my best friend and the most trustworthy horse I have, to this day, ever met. I used to fall asleep doing homework in his stall, only to be awakened when he dropped wet hay on my head to say hello (he ruined more than one calculus textbook). I never thought of life without him and in my mind he’s still retired in Ithaca, hopping — he did hop — around in his field, trying to convince his girlfriend Katie to play the hide and seek like game I taught him. He’s not dead; he’s just elsewhere.

Losing riding was different. Riding didn’t go elsewhere — I went elsewhere, my left side lost what should have been a hardwired connection to my brain and now I can’t walk or even stand up without assistance. Let alone ride. I always imagined riding centerstage in my life — it always has been. Through college and graduate school, when so many girls I know had to quit or simply stopped, I did whatever I could to keep riding. It was, to be honest, far more significant to my sense of who I was, who I am, than academics. Horses were my life. It was that simple.

And then. And then.

Immediately after I realized I would not ride again, I felt, for the first time, this overwhelming gulf in my chest that physically hurt. If I wasn’t a rider, who was I? If riding was no longer my escape from the thick, tangled weeds of cancer, what was? What could be? Nothing could repair or even bridge that gulf. I kept thinking in unsteady circles, testing the past tense for stability and finding none — I used to be a rider I used to be a rider I was a rider I used to be a rider

That gulf is still there. But so am I.

In the process of spinning and losing ground far faster than I could recover it, I somehow didn’t unwind. I used to be a rider. But I still am a rider, too. The things we cherish that we lose continue to define and shape us long after they are gone. Identity isn’t a single point; unlike objects in motion, for which you can’t know velocity and place simultaneously, identity is definable in every moment by its force, shape, speed, place. Identity you can know — you can know how fast it changes and how it grows, what seeds were planted when, where you were in those moments. The motions of the past — the places we were, the steps we took, the things and thoughts we held — are always with us. They tell us who we are, who we are to become. We are amalgamations of times, places, ideas, people, friends. What we love. They do not fade when their time is passed. They just go elsewhere.

Ultimately, I will go elsewhere too. But not yet. And, in the meantime, I am still a rider.

Coping

Once again, I’m stuck in the hospital. I was brought here after vomiting blood (pleasant) and then got myself admitted because my blood levels were even lower than they expected. Cue the usual series of tests, scans, meetings, add in 3 blood transfusions and 1 platelet transfusion (both of which I am now an unlikely fan), and here I am. In the midst of all this, it comes to light that our apartment isn’t safe for me anymore, so now we get to move into a luxury apartment (the only kind new enough to conform to disability standards in Boston) ASAP. A necessary move that is both good (luxury apartment bitches!!!!) and sad (we love our house now — it’s our lovely little first home).

So that’s been our week. Ask how I’m not losing my mind and I can’t tell you. One of the oncs on call actually told me that I have weeks to months left, but all Kai and I have been thinking about are the logistics of moving so soon. Coping mechanism? Probably. But then again, I’ve always been a statistical outlier and that’s been in my favor in the past. And “weeks to months” doesn’t feel right — just doesn’t sit right with either Kai or me — on more than an emotional level. It just isn’t going to happen — and we’ll hold onto that for as long as we have to.

Coping isn’t always about facing the truth or the supposed truth head on. Coping is a negotiation, a maze like navigation among the thousands of stressors that push themselves into our brains and our lives. Coping is active and communal — it means sharing your fears but also embracing your hopes and placing your belief in the ideas that feel right to you. Coping is a flexible, day by day process, the outcome of which has a new shape each day. Coping works and it doesn’t — it can’t change the future, can’t predict what’s going to happen, but it does something far more important. It breeds the energy you need to shape your future as much as possible. It gives you the bravery to ask questions, the strength to listen to the answers, and the insight to write your way effectively into the story those questions and answers create.

The growing limit to my mobility has been one of the greatest tests of my coping mechanisms. I had to give up riding and climbing, two of the most important elements of my life. The night we realized I would never ride again I cried — no wailed — for an hour. I’ve ridden since I was six and worked harder on doing it well than I have on anything else in my life. I was not naturally talented. I had a feel for horses, but my position was a disaster and my body completely out of my control. At first, I was horrified of how far away the ground was. But I stuck with it, and after a series of amazing, hard trainers and horses, countless late nights watching good riders and learning their techniques, and thousands of hours in the saddle, I suddenly became good. Honestly, I was better than good. I became my best trainer’s demo rider and worked his clients’ horses. I kept learning. Compliments poured in. I knew I could ride at the highest level well, but the money for the horse wasn’t there. So I kept riding others’ horses — any horse I could — and then one day the perfect horse, who I loved and who loved me, who had the talent, who I blended with immediately, dropped in my lap.

And then my mobility failed.

Coping isn’t about managing seamlessly. Coping is recognizing the fault lines that show up across the plain of our plans. Coping is holding out hope, but taking a good, long look at those cracks. And then coping is about learning to step over them.

On “Cancer: The Emperor of All Maladies”

My left hand is shaking as I write this.

But I’m not scared. I don’t have a nervous tick or a reaction to writing again on a disease I have and will likely die of. I have a brain tumor sitting on my right frontal lobe, which diminishes the agility and responsiveness of my left arm and hand to what the nerves in my brain can tell them to do. I have stage iv breast cancer and have for two years now. It’s not pleasant, my symptoms and the side effects of my cornucopia of drugs are no fun, and the first six months after my diagnosis were a hellscape of panic attacks and bad luck. But at this point? Well, you get tough and stand up to it the best you can – even when you know the worst is probably still around the corner – or you don’t.

And that’s the problem I have with a lot of cancer stories. They take the personal and turn it into the pathetic. I’m not advocating for a perspective that demands cancer patients be inhuman fighters or warriors or never weak or scared – I have my share of weepy “this sucks, I’m horrified” days, believe me – but I am an advocate of being honest. And honestly, most cancer stories suck, even those about stage iv. They’re often self indulgent, whiny, and unproductive. They push us into the role of victim when our coping mechanisms (I am extremely organized) work pretty well at keeping the beast at bay most of the time. As a cancer patient, you have a choice: suck up your fate and don’t let cancer steal anymore of your energy or time than it needs to or don’t. The latter is what frightens me.

But that’s what I like about the story I’m writing on now. PBS’ episodic version of Siddhartha Mukherjee’s elegant 2010 book Cancer: The Emperor of all Maladies, directed by Barak Goodman and produced by Ken Burns, is both scientific and personal, yet does not turn the personal into a sympathy circus. But it’s not your feel good, cancer gives you perspective and power narrative either. It’s something different that hones in on the fear and strength of those who live with cancer and how both are affected by the science behind the disease and its treatment. Mukherjee, Goodman, and Burns have crafted an impeccably researched, thoroughly engaging, and cinematically masterful account of cancer’s story – from its earliest recordings in Ancient Egyptian hieroglyphics to its most recent and exciting developments in the field of immunology. Interspersed with these historical narratives and scientific data are incredibly personal stories of those with cancer, which gives that science and those histories a face that that we must reconcile – or, as the case often is, cannot reconcile but must accept – with the crushing fear of the word “cancer.”

So don’t get me wrong, cancer is scary. But part of this series’ mission is to, as Goodman told me in a recent interview, “wrestle to the ground this scary thing … by demystifying it” with a heavy dose of science. That heavy dose of science that he and his co-creators are after recalls what I learned in my first few weeks post-diagnosis: cancer, really, is not one disease. It is constituted by a number of diseases, all marked by abnormal cell growth, originating from and threatening multiple parts of the body. The analysis and treatment of these growths vary wildly yet are lumped under a convenient moniker: cancer. This amalgamating makes the disease itself hard to handle. If cancer is everything, how can we beat it?

Mukherjee, Burns, and Goodman’s responses to that question come in those three hour and a half episodes. The depth of the featurettes – from what Goodman calls the “fascinating adventure” of cancer research to the sculpted animations of that research that “bring science to life” to the poignant silences that pause patients while recalling their stories in medias rex – take the sensation that confronting cancer is like “going into the fog” and turn it into something embodied, textured, and real. Goodman’s view that the highly specialized medicinal side of cancer research can be “as much art as anything else” avoids over sentimentalizing the courage and perseverance of patients who feel at times a little too much pressure to be positive in the face of a disease that does not respond to reassuring hugs or sympathetic smiles. Yet it also leaves room for that courage and positivity: sometimes you just gotta don pink angel wings and feather boas and march your way down Boylston with the rest of the Avon supporters. One of my best friends did this every year with a gigantic smile on her face all day; she died from breast cancer in November 2013. That’s the kind of story Mukherjee’s is – and I’ll never stop missing her, but that’s the kind of story I like.

And this kind of story is refreshing for patients like me because it not only reminds the world of the darker, less glamorous side of our disease, but also because it pairs the unavoidable heaviness of that with research and courage. Cancer isn’t an ennobling yet enigmatic condition that spawns Shailene Woodley-like heroines who exude keen intellect, biting wit, and tremendously styled hair like most of us exude degrading and painful symptoms (see: left side unresponsiveness and other, fun side effects like nausea and atrophy). But it’s also not an excuse for whining or self-indulgence or defeat. Sure, you have your “screw it, I’m staying in bed and watching Parks and Rec” days (I juts had 5), but enjoy that TV show. It’s still YOUR time and your TIME, not cancer’s. Cancer is what Mukherjee, Burns, and Goodman say it is: a highly personal and scientifically fascinating mistake our bodies sometimes make that deserves our attention. But, especially for us in the trenches, not all of it.

Movement

I’ve not used my blog for this before.

Lately, typing is hard. My left hand suffers from a loss of dexterity and some minor tremors because of one of my brain tumors. It’s dead, so the nerves should start to repair themselves soon: we’ve zapped it with focal radiation and I’m on steroids to help with the edema that’s aggravating it.

Still, it is aggravating. I taught myself to touch type when I was young, and now my typing feels labored — something I have to focus on and think about. But instead of whining about this new stepping stone, I’m learning how to live with it until it resolves.

So I found an old poem that wasn’t on my new computer and transcribed it tonight to practice typing something that required focus and agility. I don’t normally share my poetry (I’m self taught and not very good), but here it is — seemed appropriate somehow. Consider this practice.

Movement

All October
we watch the decadent decay of swallows
descending South for the winter. Your hand
rest anxiously on my shoulder, heat
from my collarbone inhabiting your fingers.
The birds call, dive,
and thread back to land;
accidental pilgrims against grey clouds.

The landmarks we recognized
were alive, and conscious: the horses
lined almost unmoving on the fence;
trees that shed their identity
every four months. Counting the leaves
was our only measure of time: the present

howling on, the past irrevocable,
pausing and falling, dead grass against
a dying horizon. “Fall,” you said
one November morning, “it always ends
crashing.” I pictured your words
photographed in my mind, shrouded
in twisted dark branches: a black lace pattern
facing a colorless sky.

The barn was ours in December, vacated
and nameless. We learned the stretch of skin
lying frozen in the hayloft, spoke lies
near twilight; the faded, aged dawn throwing
shadows on our words. We chanted rhymes with
elastic certainty – “Make me no promises
tell me no lies” – and pretended to catch firefly skeletons
in the lap of night.

It is not the things we have built, I think,
but the ruin of things
we want to build.

The pattern of winter seeping
strong into your face taunts my nerves
with delicate fingers. You bring salt water taffy
from home, the sting of summer
catches against my teeth. The sun is the same.
Holding a brilliant metal court, but its rays
extend just above our atmosphere

tasting the earth
with a hollow tongue.

So It Goes

I haven’t written here for awhile. This isn’t because things haven’t been going well — it’s because things have been going. In mid-June we learned that my brain tumors were growing again and I started a chemo trial of ARRY-380 — 5 magic little pills that I took everyday and stopped the brain tumors in their tracks with no side effects. Kai and I got married on June 27th — we had been talking about it since November, and when the brain tumors came up, we figured hey, why not? We then set about planning a larger ceremony and reception for early October and in late September, two weeks before the wedding, found out that my brain tumors were growing AGAIN. So much for the magic little pills. We planned a two week “wash out period” for the ARRY and a new chemo trial. But, less than a week later, I started seeing skeleton-robots walking around one evening and woke up thirsty that night but refused to let Kai go into the kitchen and get me water because “I’m in another dimension and if you leave you’ll never find me again” (on the list of the interesting ways to terrify your husband in the middle of the night, that’s at the top). Cue one midnight MRI, which revealed that (thankfully) my newfound dimensional-skeleton intruder woes were not the brain tumors but the excessive edema swelling around them. Cue steroids and a new chemo regime right the fuck away — lapatnib (tykerb) and capecitabine (xeloda) — which I’ve been on since then. They’re not so bad and I have scans in a couple weeks.

So, it’s been going.

But in the midst of all this insanity, other things have been going as well. I published this piece with Elle Magazine online and got my first academic article accepted into the Winter 2014 issue of the journal Studies in American Naturalism. Dana Farber’s online newsletter Insight contacted me about writing an entry for their blog, which should go live later this month. I’ve broken through the thick, thick ice that was encasing chapter three of my dissertation and finally started writing that productively too. I’m in the processing of donating my beloved Super Pony to a therapeutic riding center, which will suit him better than his current once-or-twice-a-week-trail-horse job. And then I’ll find a new horse to take on — one I can actually use some of my dressage training on (once upon a time, I was a pretty accomplished rider). And I’m still climbing.

And I think that’s the point, or the truth of a stage iv diagnosis. Whether you like it or not, things keep going. Your cancer keeps being there, but so does your life. And you can choose which one you embrace more. Cancer, its treatment, and all the side effects associated with both are going to take the time and energy that they will from you. Lapatnib and capecitabine suck. Climbing and riding and barn work are harder than they should be. I haven’t been able to fit into my jeans since the wedding (which was delightful, by the way) because of the swelling and bloating from the steroids. And don’t even get me started on hand-foot syndrome (boy does that make climbing fun these days).

But, as stubborn as all those side effects and symptoms may be, I’ve chosen to be more stubborn. I’ve chosen to orient my thinking and doing as much as I can around the things that make me happy. The things that make me feel healthy. The things that make me normal. While I’m always as honest as I can be and never deny or hide how sick I’m feeling, I do my best to deny that sickness center stage. I do as much physical activity as I can and on the days I can’t, I relish the opportunity to binge on Parks and Rec. I make as many jokes out of the more bizarre side effects as I can (like, seriously, skeleton-robots? Another dimension?). And while I hate the weight gain with a passion (thank god I’m finally weaning off the steroids), I’m pretty sure I love yoga pants more.

And those are the things I want to hold onto — the things that keep me afloat and remind me who I am despite the cancer. Those are the things I have to hold onto, that I have to cultivate actively for myself because, when you’re stage iv, you need the good stuff to overcome the bad stuff. At the end of the day, as long as you’re alive, you still need to live with yourself. And no one other than you can make that living any better. Like Kai and I are fond of reminding each other, “You need to be your own number one fan.” You need to just keep going.

I’m always going to be a cancer patient. That’s just what having stage iv is. But I’ve been and I’m going to keep being Kiara for way longer than that.

Hey, Bulldog

When I was first diagnosed, way back in October 2010, a friend of my mum’s — who was and still is a breast cancer survivor — messaged me and gave me advice I’ve never forgotten. It’s also advice I give to anyone who asks how to manage a cancer diagnosis and all the shit that comes along with it. She said, “Don’t forget: while you’re in treatment, it’s your TIME and it’s YOUR time.”

I really took that to heart. Cancer treatment — and now, just plain the time after diagnosis and the time in continual treatment — is MY time. I own it. Having cancer doesn’t change the control I have over what I want to do with my time (barring when I have to, oh, I don’t know, show up at the hospital for treatment so I can keep having time) or the fact that the minutes, hours, and days of my life are still mine to live. And it’s my TIME. It’s what I have — really, it’s all I have, or all anyone has — so I better do something with it that I can live happily with. And it’s weird, because one of the most frequent comments I get is, “Man, I don’t know how you do it. If it were me, I’d just lay in bed and cry all day.”

But here’s the thing: when you’re diagnosed with a terminal or life-long illness, somewhere along the line something hits you. I spent my share of hours in bed (and, if I’m being honest, I still do) watching bad TV (I love bad TV) and over the top 80s sci-fi/fantasy action movies. When I don’t feel well — either because of treatments or because my newfound post-treatment pathetic little immune system takes a day off, the asshole — it’s pretty much all I do. But lying around basking in my imaginary life away from responsibility only can last so long. After awhile, I start to feel restless, even bored — and I start wondering how many more Law and Order:SVU plot twists at exactly the 52 minute mark (I promise, measure it) I can take.

So it hits you: Hold up, you fucker, this is my time.

So how do I do it? Well, like anyone else. Or, more specifically I guess, like any other late 20s literature graduate student with a horse and a only half joking goal to be the most proficient 5.9 climber at her gym. I get up in the morning (reluctantly — my body is convinced that the day doesn’t start until 11:00 am and who the hell am I to try and tell it differently). I drag myself, still half asleep, to the barn and do my shifts and work for the day and wander around the fields with my horse (and feed him way too many apples in the process). I bang my head against my keyboard on a frighteningly regular basis and pretend the outcome is a sufficient chunk of my dissertation. I write to friends — those with cancer and those without — and keep up with the people I love. I cook dinner for myself and Kai and only fuck up 10% of the time. I cuddle my cats — mostly against their will.

So it’s my time. And it’s not particularly exciting time, but it’s mine, and I spend it now pretty much the same way I’ve always spent it. And I’m fiercely determined to keep doing that — I always have been. Growing up, my mother called me a “bulldog” — I think in an effort to chastise me for being too loud, or too forthcoming, or too whatever — and I always took a certain degree of pride in that. I am a freaking bulldog. I stand up fervently for what I believe in — and I always have. I speak loudly. I live in bright colors and strong shapes — in the heavy presence of the world around me. I speak my mind, don’t often censor myself, but I also think carefully about what I want to say and to whom I am saying it. I could never, even for five seconds, be called a WASP or waspy, and if I ever hear anyone say the phrase “We don’t do that sort of thing” or any of its derivates to me again I may punch them.

“This was not an easy child to raise,” my mother also said of me. And that’s because my parents raised me — the daughter of a union president professor and an ABD wallpaper hanger. My brother, though it manifests differently, is largely the same way. Headstrong, stubborn, strong willed. Insightful. Sensitive. Willing to make mistakes. Willing to laugh.

My brother is kind of a touchstone for me. We are, in many respects, the retrograde of one another. I look up to him in the circuitous way only a big sister can. From periphery angles, from moving glances. With a deep seated pride nestled in a kind of love, the contours of which are so vast I can’t reach them. More often than not it is him I’m writing for.

But back to being a bulldog. I think it’s important — in fact, I think it’s good. Because somewhere along the way, being a bulldog took up the space that my body was reserving for paralyzing fear — the kind of fear that often accompanies this kind of diagnosis. I am frightened, a lot, but the bulldog in me snaps her teeth and growls at fear. And she doesn’t back down, or get quieter, or take a break. She can’t — I can’t — and so we won’t.

Charlene was, in many ways, a bulldog too. A sweeter one, and probably a more polite one, but she kept growling and demanding treatment to the very end. I miss her. I have a packet of chocolate Necco wafers sitting on my desk that she brought me my first day of treatment, the second time around. I imagine they’ll disintegrate long before I let anyone eat them.

So, I think, be a bulldog. Be difficult to raise, be loud, be insistent. Choose the direction your energy wants to take and follow it with the blinding fury of ten thousand suns. And learn how to harness that energy so that you can share it with others rather than burn them with your movement. Growl at the things that frighten you.

Be bold, bulldog, and mighty forces will come to your aid.