Monday, November 17, 2014

on being fired and cleansed of some self-doubt.

The job fell out of the sky and into my lap. It seemed stupid to reject opportunity, and I am glad that I took it. I learned important things about my (gag) "new normal" as it is right now, about what I want for my existence right now. The job left as swiftly as it appeared, and after a few days of existential crisis dotted with pools of ennui I am relieved.

For certain people, that was a dream opportunity. A foot in the door at the most technologically-advanced stop-motion animation studio. Regardless of the endless low-rung grunt work, it is a good gig for the right person. Someone whose sights are set on a career in animation or film. The pay is good, the people are mostly awesome, the setting is regularly jaw-dropping thanks to the thick concentration of talent employed there. It's not my opportunity. Partly because I still have chemo brain moments where the synapses fire the wrong way and I don't remember if I am coming or going, or think I have done something just because it happened three previous days in a row. Partly because I don't care if I work in animation. Animation and film are the extended families of theatre, writing, and fine arts, but they are not the parts of the family where I belong. I like to design sets for the stage,  paint trees/skies/dreamy scenes, write short stories and poems/prose and letters. Yes, those things have a role in animation when there are puppets and massive set pieces at work, but my ambition is not to work for a studio, no matter how cool a job that might be. So when I was "asked to resign" to make room for someone who can get along with the corporate aspects of the place, who had ambitions to be an animator, I didn't take it personally.

I was hard on myself for a couple days, not for the rejection but because there was a time that I had enough drive and just the right amount of self-deprication to flagellate my spirit in order to be a rockstar at work. I had an incredible capacity for a wide spread of attention, a desire to be at the top of the heap, a brutal eye for detail. It hurts that some of these have softened or changed. The adjustments that have happened to my personality take time to recognize and embrace. I am constantly updating the list of what I can do and what I need to let go, and there is a lot to reconcile. I chased an opportunity because I swore I would say yes when opportunities appeared, but in doing so I had to let go of my resolution to live a full, satisfying, present life. So I am relieved to be let go.

There are ways in which I lead a blessed existence. Not the least of which is my intimate, reliable network of close friends and family. I was mortified and nervous telling people I had been canned, but a truly healing thing happened: I fell and was caught in a net of loving arms. I didn't want to tell them I had failed, but I did and was met with, "is it really failure? You tried something that sounded promising, and it wasn't a good fit. Breathe now and be kind to yourself." There have been hard whole years recently, harder than what a lot of people ever have to face and the people who love me most dearly have seen that and watched me creep away from cancer like a whisper, shoot into my new life like a cannon, and won't let me see this as a set-back if I don't also appreciate it as a nudge in a different direction.

"I'm sorry this happened, I'm sorry you're sad, but you are kickass and I know it won't stop you," said my mom.
"I'm proud of you for giving it a go, and I know you will find the right thing. Be easy on yourself," said my dad.
"Now you are free! Follow your heart!" Said a best friend.
"Take a beat. Don't rush into anything out of fear or frustration. Make art," said my love.
"All I want is to paint. All I want is to run into the woods and take photographs. All I want is time to write when my brain is most fertile," said me.

The next step is no grand thing, no demanding 9-5 or foodstuff job. The next step is to breathe and do what I set out to do at the start of summer: paint, draw, write, adventure. This life is ephemeral. This life is what I fought for, and not to be squandered feeling inadequate and impotent. The letdown of being fired lifts and the gift beneath is the chance to do exactly what I want to be doing. And so I have committed the rest of 2014 to writing and making art, exploring and adventuring, nurturing my relationships. My new life is mine again.

Friday, October 10, 2014

on surviving.

I have lunch breaks now. Lunch breaks, a commute, a time sheet, a department, a 401k, obligations, a workplace. I drive about a half hour to a suburb where there is a huge warehouse-type building full of people who collectively produce wonderful stop-motion features, and I am perched on the very lowest rung where things need to be cleaned, fixed, installed, stocked, and polished.

But perhaps I should rewind.

This summer was going to be all about wandering about outside. Being cooped up for multiple years was a struggle, was a prison. I just wanted to be where I belong with water, mountains, trees and sky. I wanted to slowly sort through the newness of my survivorship, assess where I wanted to head, reconnect all my disparate parts and ease into life on the other side of my time in stasis. Instead, a friend of my brother's suggested I take over the job he'd been promoted out of, and before I knew it I was being called in to interview. They must have liked something about me because here I am three months later, blogging on my lunch break.

Why has it taken so long to update? I have not stopped moving since Maui. Now that autumn is here, I find myself scaling back on the hyperactive pace with which I have been careening through my days and actually taking the time to reflect. 

Imagine you have spent three years in a dimly-lit room with very little exercise or stimulation. You have infrequent opportunities to interact with people outside a very small subset of those closest to you. You have a limited diet, and every so often you are in some way drugged, maimed, or poisoned. One day, the forces at play decide to back off and give you respite. You are slowly eased into basic tasks, and the poisoning et. al have been discontinued... but the lights are usually off or very low. As soon as you have regained enough strength to perform the basic tasks of survival and your body can function without intervention, you are pushed through a door at the end of a friendly enough hallway out into the open air. The simple daylight is blinding. Everything is louder, chaotic, feels more. You have to remember how to do all the things you took for granted before. You have to remember how to interact with people outside of the room. You grip fiercely to whatever hand will hold yours and wobble about, or run at full speed until you slam into a wall. Eventually, your eyes start to adjust and your legs get firm beneath you, but it takes time to feel like you are a whole unit that takes up space and deserves to be away from that room and is a dynamic presence in the rest of the world. There is a quiet, giddy power that starts to fill every small space between your organs and overloads your synapses. Maybe you start to shoot laser beams from your fingertips. Maybe you can stop time. Maybe you are bulletproof. The fear of being back in that room slowly is overshadowed by the euphoria of being away from it. You are hungry all the time; for every sensory experience, every challenge, every sweeping vista. But you find a number of blurry spots in your brain that don't always take to sharpening and sometimes you wave your arms about and forget that in all this space there are so many people and objects. That's when the euphoria dulls and you find yourself feeling overstimulated or confused. The road doesn't look right. The sky is an off color. Nothing has changed, but now you don't belong to any of it. It's time to stop, reassess, and figure out where to go from here.

This is me in the first year of surviving the cancers. I've had a bit of a hard time adjusting to working at the studio. I have to think five steps ahead all day, which is taxing when it's a rusty skill. I now have breaks mandated by HR, which has eased the stress of reworking lost synapses quite a bit. I am actively dating, which has been a weird experience as not only a cancer survivor but a woman in her 30's who hasn't dated in about four years or more. Dating has been an online freak parade and a couple of pleasant-but-meh dates with guys with whom I've been set up. There has been one lovely exception, one truly delightful interruption of a string of "I don't think I want to date if this is what I slog through," but I am not going to tell you about it right now because we just had date numero un and I am not keen to kill the mojo with the internet. I will tell you he's just so awesome I floated into work on a cloud chariot pulled by two dozen tiny birds this morning. But that's it. Everything else is none of your business because I don't know what's going to happen next and blabbing all over the internet about it with my typical semi-candid verbosity is just uncouth.

That is pretty much where I am at, folks. So much has happened over the summer that I would love to go on and on but here my lunch is coming to a close and I need to prep the weekly Friday Party. Until next time, well-wishers...

Thursday, May 15, 2014

Impossible.

You are a young adult and you have cancer. You have cells in your body that have gone haywire, that are defective, that are going to kill you. You are going to have to have chemotherapy/surgery/radiation/a bone marrow transplant. You are going to feel worse than you have ever felt, pray to die, pray to live, lose relationships, have your career/family plans completely derailed. You will have to watch for a recurrence of your disease the rest of your life. You will have to deal with the physical and emotional ramifications of treatment the rest of your life. You will wonder how much is left of the rest of your life. You will feel isolated. You will fight quietly, trying to participate in as much as you can to spite this disease. You will fight loudly, crying and yelling, laughing in the face of cancer. You will develop stronger bonds with the people who stay close. You will have small victories that lead to bigger victories over your cancer. You will have setbacks. You will see your priorities lit like spotlights on a dark stage. You will learn to stand up for yourself, speak for yourself, trust yourself. You will get to know your body better than ever. You will know your mental happy place and how to live in the present. You will channel inner strength from a well that seems to have no end.

And if you are lucky, you will go to surf camp and you will meet impossible people.

I spent a week at Camp Koru, surf camp put on by Athletes for Cancer. A4C is a non-profit that provides surf- and snow camps for young adult cancer fighters, giving them a chance to meet other fighters, reconnect with the natural world, and feel like more than a patient. My week at camp changed my life. I came home confident to start this new life, no longer scared and lacking in self-confidence. I came home with a most powerful community in my heart.

Camp was a rustic cabin set-up at Oluwalu on Maui, right on the edge of a popular snorkeling reef.  I showed up nervous: would there be cliques I would have to navigate? Would my cancer journey be cancer-y enough? Would I have to (shudder) talk about my feelings? To my immense relief, I found myself in a tropical paradise surrounded by people I had been waiting to meet for years. Fighters, survivors, ass-kickers, kind hearts, warm smiles, gallows humorists. We spent all morning on the ocean and the afternoons snorkeling, relaxing, and taking trips into Lahaina or the little store up the road from camp. On my birthday, we paddled outrigger canoes and visited Paia. We ate every meal like royalty, thanks to the incredible talents of our volunteer chef... who just so happens to work at one of my favorite restaurants in Portland. In the evenings, we sat around a tiki torch campfire and talked about our lives.

This would have been a marvelous vacation on its own, but it was so much more than that. The staff was warm, welcoming, and fun. Most of them have been affected by their own cancer experience, or the cancer fight of a loved-one. My fellow participants - all of us women except one lucky guy - are the definition of strong. Strong-willed, strong-spirited, strong-hearted. We talked in the ocean, in the vans, at meals, on the beach, at campfire. We swapped war stories, jokes, love stories, and tales of heartbreak. We whooped in encouragement when someone caught a wave, we cried together when shit got real, we shared comfortable silences. All of us people who were given horrifying diagnoses, who refused to submit to tragedy, who insisted on being more than our diseases. I marveled all week at the people around me, who rolled their eyes at terms like "inspiring" despite the fact that every one of them is. We spent a week just being ourselves, fully and without being "the brave cancer survivor" of the group. I found myself talking about the things I can't name with my family and friends, and learning a ton from what other people shared with me. As the week went on, everyone pushed past their own obstacles. Everyone took care of one-another. Every one of us have been living with diseases that wanted to take our lives and our happiness, and every one of us are defiant. On our last day of surfing, I looked around at all my new friends in amazement. Here were people who would have died without treatment and walked through fire just in case it worked. People who understood like no one else the truth of their own mortality. People who were riding the ocean, laughing and cheering and spotting sea turtles. Impossible people. My ohana.

transitional post about reality

Why has it been so hard to write about my experience at Camp Koru?

I thought I didn't have the words, that I needed to process my experience before I could give it form. But you know me, I struggle trying not to be verbose. I thought I couldn't do it justice, that I didn't possess the voice or vocabulary to honor the place and the people. But I know the one thing I can do is write.

The fact is, I have been hanging on to every precious bit of that trip. Trying to describe it means analysis and definition, and for the time being I have enjoyed keeping it pure. I have enjoyed snippets of camp washing through my memory, and reliving it aloud puts it in the past and me in the present, and I haven't been ready for that. I came home to the half-unpacked apartment I had left, tired but happy. I tried to finish unpacking but kept having to nap. I went to a play, then out after with my friends and the cast, and I woke up barely able to rise. Was I hungover? I only had a beer and a whiskey, plenty of water. Maybe I was still recovering from my trip. I slept most of the day, dreaming of Maui and the ocean, missing the people I had met there.

The next evening, a spot I thought was an irritation from my bikini turned quickly into a prickly rash. I could feel it spreading. I thought it was typhus or some other tropical malady I had contracted when I unpacked my suitcase. I cried a little, called my family, got a ride to the ER. Four hours of waiting and watching a drunk college student's hand bleed three times through his bandages before they finally wheeled him back, I gave up and went home to sleep on an ice pack. My oncologist diagnosed shingles the following morning.

The post-camp glow is over. I am in bed with no appetite or energy, with the feeling that I was struck in the ribs with the broad side of a white-hot poker. This is the present, camp is the past, and now I can talk about it.

...in another post, so I don't taint it with my disgusting shingles problem.

Monday, May 12, 2014

fully-grown adult human becomes adult human again after years in limbo.

I have finally moved back to Portland. I have an apartment, a roommate, a gas bill. I get myself all the places I need to go. I have good blood counts and enough of an immune system to allow me to be a regular participant in life outside doctor's offices and carefully-orchestrated ferry rides and trips to the grocery. I do not hyperventilate when I see someone sneeze without covering their mouth, but I do still wipe the grocery cart handle down before I can touch it. I make sure I am taking my last couple medications. I make sure I eat. I exercise: I work out with my resistance bands and hand weights; I jog some; I hike; I surf again.

Unpacking has been difficult. I have three lives melding together in a shared apartment. There are scraps of my life before, including mementos, outdoor gear, a surprising number of CD's, and shoes. During-cancer life is full of clothes meant for someone reduced to skin hanging on a tiny frame, toiletries that were left behind and then packed into a storage unit, hair accouterments for long hair that hadn't yet fallen out, trinkets and tidbits that serve no purpose other than to remind me of a tragic romance. Unpacking has meant sifting through boxes and boxes and boxes, deciding what to hold on to and what to let go. So far, it's half of one and half of the other. Now that I am about 85% finished (aside from my books, whose bookcase broke when I moved out in November), I am becoming less tolerant of items that can't be thrown into a frame pack or trunk at a moment's notice, of those things that clutter my corners and don't move me forward.

I moved in at the end of April, but I went to surf camp for the first week of May. I only got half my unpacking done before I had to leave, and the emotional process was perhaps what I needed going into camp. It opened up a lot of things I had locked down in order to get through the transition from Cancer Patient to Regular Adult Human. I thought I wasn't ready to deal with any of what I still hadn't let go of, that the things that hung on needed to be suffocated. I heard, "you are so inspiring" and it made me want to start a bar fight. Not inspiring. Fawn-legged, lost, uncertain. I was far away from myself and stuck on the fact that the BMT had taken so much from me. But then I went to Camp Koru run by Athletes for Cancer and closed the book on feeling less-than. That is a whole other blog post.

Now I am back and chucking piles of waste out of my life. Bags of garbage, boxes of donation items, a steady stream of what I don' t need. Just in time for summer. Just in time for something new.

Sunday, April 13, 2014

left it all at the top

My body is on a weird sleep schedule lately. The Ambien they put me on in Seattle has been perfect for the last six months or so when I wanted eight solid hours of sleep. The last few days have found me awake at 4:30 in the morning to use the bathroom, though. Then, of course, I am wide awake despite attempts to bury my face in my pillows and get my body in exactly the position it was in when I was asleep. If I know anything about me, I know this is a good time to write in this-here blog and free up some brain space.

New birthday is July 19th, so I have my long-term follow-up visit at SCCA scheduled for the week before then. I am actually excited to go to Seattle. July is a nice time to be there, and tests to see where I am on the righteous path of bodily healing are the same as the tests to determine my fitness for a bone marrow transplant, but the psychology is different. Everything about this year is different. I'm taking steps and leaps in the direction of my optimum health instead of bracing against the onslaught of surgery after surgery and the inevitable transplant. That is all behind me and I keep shedding the hang-ups of that experience like layers of clothes on a sprint to skinny-dip.

Angel's Rest was a good place for me to leave a lot of that behind. A few dear friends and I hiked the 5-mile up-and-back in the Columbia Gorge last Saturday. The hike is 2.5 miles up with a 1,500' elevation increase along the side of the Gorge that switchbacks through deep green forest and along exposed boulder falls. Every turn of direction opens a view of the Columbia River or Cooper Falls, and this time of year sprinkles much of the lower part of the trail with trillium blooms in white, pink, and purple. I have done this hike quite a few times, and I usually ascend without stopping until the half-way point amid one of the rock falls. We must have stopped three or four times on the way to the summit, which was mildly frustrating for me as a reminder that I am not yet where I want to be in my physical fitness; my friends are gracious and kind and helped me see that being up there was a major accomplishment in of itself. All the way up, I pushed myself to climb a little further than my comfort zone. It's always been my way, at least as an adult. I was a timid kid but as an adult I have found the only way to get what I want is to shrug past that initial discomfort to see what the limit really is. The more life I have, the less interested I am in coddling the little voice inside me that wants me to stay within the confines of what is easy and comfortable.

The last few years of surgeries and my transplant have forged that in me deeper: taking on more pain than I wanted so I could be stronger than a potential painkiller addiction; letting go of long-held, unhealthy, imbalanced relationships so I could increase my exposure to my own good nature and appreciation of the caring, brilliant people in my life; walking miles' worth of laps around the BMT ward to keep my muscles from atrophying; taking ballet to rebuild the muscles prednisone wasted by 25 percent; wading back into my hobbies a little at a time, even when my cognitive skills were impaired, because I was depressed without them. The pushing past where I was to get to where I am trying to go has led to a lot of growth, but it's also saddled me with some empty- and half-full baggage to drag around with me. It made the climb up harder, but I left a lot of it at the summit. I left the "Cancer Patient" identity on the bench at the top of Angel's Rest because despite my bi-weekly oncology check-ups, I'm not much of a patient anymore. Sure, I am on a few medications, but I am not the sickly thing I was before my marrow went into remission and my new immune system started destroying the HPV. I left "needing a caregiver" on the bench because I have taken every step to being an autonomous adult again and have the strength and faculties to take care of my own life again. I found an apartment and a roommate, I take Amtrak and Trimet with only a little bit of germ-related hyper-vigilance. I can cook again, read without getting tired after three pages, take crazy long walks for no reason again, knit complicated patterns, maintain a conversation. The last bit is actually still a little hard but not because my brain is healing from being poisoned; I haven't had much in the way of conversation for a while, and less in experiencing life outside my bedroom or a hospital or cancer clinic. It's a practice thing. I also have a hard time talking to attractive people, which is new for me and something I left most of on that bench. I have felt "undatable" for a while, even though that worry has been fairly irrelevant most of this time. I went through a needlessly dramatic break-up, gained a little belly pooch from the prednisone and all the sitting, part of my vulva was removed, and I've been largely mystified at how I am going to get back to being a contributing citizen of my community. The drama of the break-up is over, I exercise five days a week, I'm going back to school, and I know how to make the new landscape of my bikini area work for me. I left "undatable" on the bench. I won't take the leap from "datable" to "dating" until I am settled back in Portland completely ...and even then being able to feel things about people in that way is a new development in healing and will have to be reciprocal and not some surprising crush feelings that turn me into a big idiot dummy when I try to converse with the object of my interest. Nonetheless, I felt my mojo coming back on my way back down Angel's Rest.

The hike down was light and springy. My friends and I chatted happily and I felt all these hang-ups that have been waiting to molt flutter off my back. This time last year, I was in Seattle for my initial testing. I spent a week there before they decided I needed a right-side radical vulvectomy and sentinel node biopsy before I could have my transplant, in case vulvar cancer had metastasized. This time last year, I was a ball of anxiety over the unknown and the imminent, clouded by pain medicines and constantly worried about the balance between my health and my partner's declining ability to deal with everything happening. It was not a good place. Now I am getting back to my old life, a new life, a life with strength and hope and excitement about what is ahead. I am proud of how far I have come in this little bit of time, and thankful for everyone and everything that have contributed to my being here and being unstoppable.


This, like so many other blog posts I put up, is mostly a stream-of-late-night consciousness, so I am not going to bother editing it. I think one day I will actually go over all this brain dump and feels-baring and edit it with my personal journals (on paper!) and make a book out of this experience. I don't feel a distinct theme or thread when I look at it all now, save for my constant need to find homes for the ideas and thought fragments and images that crowd my brain. We'll see. I'd really like to make this into something real and whole.

Tuesday, March 18, 2014

writing frustration vomit

My writing hang-ups:

I am not very funny. I am not great at pop culture references, outside of certain punk- or alternative acts, from the 80's and 90's; the questionable content of similarly-aged children's programming; mid-to-late-90's internet culture; 75% of the works of Miyazaki, plus nerd times like FLCL and Cowboy Bebop; weirdo movies like "The Young Poisoner's Handbook." I am protective of people in my life, which conflicts with my strongest asset: my willingness to be candid. My candidness is confined to my little lens. I don't know enough about one thing to write on a theme with any sort of regularity. I could, I suppose, with a task ahead of me. The task ahead of me lately is to write down all the feels and the events and keep it minimally gross and reduce dramatic nonsense in writing to the bare bones because though raw wounds and old scars attract a certain type, this blog is not as anonymous as I pretend it is. I save Tumblr for that. I can write personal accounts and objective accounts, but creative stories and shorts balk me. A blog like mine feels like the natural evolution of the study of poetry and prose that filled stacks of notebooks in my younger years. 

When I write in this blog, my audience is me. I have a vague idea of who reads this blog, and it's a decent number of family members and friends, some of whom are better off not knowing everything buzzing around in my head, so as soon as the shrubbery gets pushed away from the candid shares, there is a semi-ineffectual guard there in the shape of my internal editor who chooses suits from Men's Warehouse and has a bachelor's in creative writing. He is not helpful; he is an obstacle. I wish my editor was more like me when the floodgates open and raw shit just goos out all over and I have to shape it into something intelligible. I like that there are a reasonable handful of people who read this when I update, but though my heart says I get the most hits when I let all the real happen without bumpers, my head wants to keep the close people I have within arm's reach from moving to just past that.

This is all a lot of bullshit, to be hung up when I write. I hate the tepid results I get when I try to swing a pen behind a shield. I do better with blood on the table, adventure in my veins, a drop of poison on my tongue. I am not going to abandon this blog. I can't. But I need a venue to write boldly and I need permission from myself to do that harder, better, and more creatively than usual. I want to feel like my voice comes through distinct and unusual. I hate feeling like I'm not growing, just finding ten different, similar ways to talk about the same old crap. I don't want to be just another whisper in a bedroom that gets eaten by the internet and abandoned. My blog was started as a way to keep up my end of a multi-person conversation about how I was faring, but my mental acuity comes back stronger every day and I miss writing like fighting, like love affairs and hitching a ride with strangers. With the mental acuity comes a lot of emotion of all sorts, and I am getting twinges that I thought were gone. Little fires I want to feed on paper in case they burn out in the world. 


But I don't know what the hell to write about.

Seems like the people near me who write do so in the form of comedy or music reviews. Like I said, I am not funny and I am not so great with volumes of pop culture, so it's hard to get a read on what wisdom I could glean. My old life was a much more prolific writer. New life is stockpiling ideas and nervous notions but not really moving down any stream yet. I have forgotten how to write a rich story or a play. Maybe I need to go back to 15 and fill notebooks full of poetry.

Meanwhile, I will listen to Ida Maria and writhe and strut and get reacquainted to the feeling of my soul being inside my body. I need to be patient while the linguistic part of my brain catches up with the emotional, creative parts.

Spooky Self Portait




Friday, March 14, 2014

precipice of great or modest change

To start things off, I should mention that R and I broke up sometime last summer. For me it was sometime around the week I started my chemo-based marrow conditioning. For him, maybe it was when I had the first shred of my mental acuity back about a month after chemo and sent him the letter explaining why it wasn't healthy for me to be with him. I haven't discussed our break-up here because there has been a lot of heartache on both sides and a lot of drama that should stay off the internet for both our sakes. The long and short of it is this: I needed him to be calm, kind, and empathetic; he needed me to be emotionally present and manifesting strength for the sake of our relationship. Neither of those things could happen, so there was no longer a foundation of trust and respect between us that was strong enough to hold the kind of relationship we wanted. The end.

That was almost eight months ago, and we have tried to remain friends in that time but it was just too difficult. Our expectations of that friendship repeatedly didn't match, and no matter how badly we both wanted to be past the pain of splitting apart it was just too soon. We don't talk now, but I wish him well and hope he finds happiness and a much less stressful lifestyle to relax into after the last few years.


I am a silver lining kind of person, and what I see growing out of this particular sad event is my opportunity to look at this new life of mine as being truly mine, with only my needs and priorities to consider. I am afraid to date after everything that has happened in the last three or four years, but I think that works in my favor. I can cultivate relationships as an individual, make plans as an individual, and set goals for myself that have baring on my life, only. I want to return to theatre, I want to spend more time outdoors, I want to try new things that this new self might enjoy. I feel like the Doctor regenerated. Still me, but a different me. I want to find out the hard way if I am too old to dance again or start playing soccer. I want to get to know this changed body better, become a single entity again after so much time feeling like an alien consciousness trapped in an irregular shell. I want the people I care about to know that I want to find one of their deepest threads and hold on to it, protect it, celebrate it because I like my fiercely loyal streak, even when it hurts and I have to let go. I want to put my heart and my brain power into a cascade of projects, ideas, adventures, and people and grow it all until I reach the very last step on my path, whenever that is, so I can turn around and see a wild, tangled wood behind me full of light and shadow and color and mist. I want to step like Shishigami and leave life sprouting in my footprints. I am going to do so much more than I have been able in the past.

Tuesday, March 4, 2014

Minor update on life

Happening in my life right now:

1) My infant niece was born! My older brother and sister-in-law welcomed their second beautiful child into the world just over a week ago, and now my nephew has a little sister as his newest audience member. I just so happened to be visiting when SIL went into labor, so I have been staying with them since the 20th to help around the house and with Nephew so the new parents can get some rest. SIL has to get back to wrapping up her last few terms of nursing school next week, so I am going to go back to my mom's today and up to Bellingham to visit a dear friend on Thursday before I come back for another week of domestic life and hanging out with cute kids. My niece is crazy cute and is the most chill baby I have ever met. Niece is healthy and adorable, and her parents are doing well. Nephew has had his whiney, stubborn dial turned up a little, but is otherwise dealing with this change in his family dynamic like a helpful little champion. I love this family and it's quite cool to be able to be here to help.

2) The time has come to find a place to live that is not my mom's house. Mom and B have been welcoming and hospitable having me in their home for so long, but now I need to re-enter the outside world where I am a grown-up who can get herself to oncology appointments and the grocery store, pay her rent and bills, and live with people who are not family. It has been a while since I last felt independent, and I am nervous but ready to to be that person again. The one real barrier is the state of the rental market in Portland now, compared to the last time I was apartment hunting in 2010. Rent in Portland has jumped up substantially, and development has happened so rapidly in the city core that formerly affordable neighborhoods are overrun with units on the higher end of the price spectrum. Relying on disability until I am cleared to work full-time again (sometime in July, after my one-year assessment) is not helping my dismay when I look at my options. I am patient and not being forced out of my current place of residence, so I can be kind of picky… but being picky and low-income is not a great combination. Renting a room in a house or apartment with strangers is so far proving to be my best option. High-traffic, crowded houses are not an option, and I need to be somewhat close to the hospital where I have my oncology appointments (and by close, I mean I need to be within an hour's bus ride because they like to schedule me at 8am), so I see ads that fit my needs and personality about once or twice a week. Keep your fingers crossed for me.

Sunday, February 9, 2014

about that time i was raped at camp

Dylan Farrow is brave. Talking out about what happened to her at the hands of a man whose work has put an untouchable mantle on his shoulders is getting her a lot of flack and the response from his camp has done everything they can to diminish her, question her motives, trivialize her experience. Thank goodness there are lot of people speaking up to say that they stand by her, thank her for coming forward after having a life of otherwise autonomy and peace away from media attention. This perverse sort of dominance happens in ways all over the violence- and salaciousness spectrums. Some of us are routinely molested, sometimes with great violence, sometimes with the subtle violence of an abuse of dominance. Sometimes it happens only once, with physical force and threats or manipulating our anxiety and fear in the moment. Sometimes it happens when we are children. Sometimes it doesn't happen until we are older teens or grown women. When and how it happens, the  statistics are staggering that it will be perpetrated by someone we know.

Every so often, there is a flurry of support for one or many women speaking up about what has happened to them. Molestation, rape, sexual assault. Every flurry shines a light on the broken bits of our society that need to be repaired because we still treat sexually-based crimes against others as taboo. A taboo that offers a stage for rape and child molestation jokes in conversation or performance. A taboo that makes us comfortable to let the perpetrator off the hook if the victim is coming forth with anything less than the cast of CSI coming up with particulates and cleaned-up security tapes as damning evidence.

A lot of strong women I respect have been opening up about their pasts, many simply mentioning the offense against them as a show of solidarity. I know I don't have viral levels of readership, but I take my personal experience seriously in this blog, so I am going to share what happened to me.

I was working at a summer camp in Oregon as a counselor for the oldest age group of campers. We had a good team that year, including a kind of nerdy guy who was generally agreed to be one of the nicest guys on staff. We were friends, not super close but definitely friendly. We had some shared common interests that led to a few conversations at break time, but to me he was just a part of my unit. He had an off-and-on girlfriend at camp who I barely knew, and I didn't keep track of their relationship status. It was a big staff that year, and though we all worked well in our teams, we gravitated to our usual groups  of friends for time off and weekends. One evening, this guy and I were sitting in the unit house after campers' lights out. We were just chatting, keeping an eye out for stray campers headed to the bath house while counselors got an hour or so to wind down without kids before staff curfew. At some point of our conversation, he leaned in and kissed me. I wasn't particularly attracted to him, but I didn't react angrily. I just asked what that was all about and he told me he thought we had chemistry. No one had ever told me it's good decorum to ask a person before you kiss them the first time, so I figured he was finding signals that I wasn't sending. I told him I didn't want that, that I was pretty sure he had a girlfriend. He replied they had broken up, but we could just go back to talking. He was super nice and was a D&D kind of nerd, so I figured everything would be cool. When our replacements came to let us enjoy the last hour before curfew, our legs were asleep from sitting on the porch. Everyone we would usually go hang out with were showering or playing Snood on the break room computers, so he asked if I wanted to take a walk to the nearby overnight site. It wasn't uncommon for people to take short walks into familiar places in the woods at night, so I said okay. He grabbed a flashlight out of his truck and off we went. When we got to the overnight site, I started heading to the picnic table in the star-viewing break in the trees, but he stopped me and led me to a cluster of trees that blocked out the sky. He told me to get undressed. He was twice my size, had the only flashlight, and knew the trail back to main camp a lot better than I. I didn't know what to do. I thought for a second that I would run in the direction we came from but as I was calculating the likelihood of getting lost on the way back, he grabbed my arm hard and directed me again to undress. I was scared, confused, had never been told to stand up for myself, for my body. Everything I learned about getting along and avoiding drama and not being so bossy kicked into overdrive and I just did what I told. He made me lay down on the ground and got on top of me. He started to unwrap a condom and when I told him I didn't want to have sex with him, he leaned a thick forearm across my shoulders and told me if I didn't want it, I wouldn't have walked out into the woods with him. This is what we were going to do. He put his full weight on my chest, making it impossible for me to take a deep breath or move my arms or torso. I stared up at the black boughs of the trees overhead, fir needles poking me in the neck and a rock digging into the small of my back. I tried to catch a glimpse of the sky between branches as he huffed and sweated himself to completion. He stood up, grabbed his flashlight, and started to walk away. He turned back and told me to get dressed and wait a few minutes before following the path he was on to the hill that was a daily part of my route between upper and lower camps. He said he would just keep this between us. I got dressed, picked duff out of my hair, and watched the glow of his flashlight fade to black before setting off back to my cabin.

By lunch the next day, I had heard the rumor that this guy had cheated on his girlfriend with me, and that I was a huge slut for sleeping with a guy in a relationship. All I could say was that we hadn't had sex, it was just a walk in the woods to stretch our legs. I knew no one would believe me. I was artsy and serious, not bubbly and athletic like the girls spreading the gossip. There was already a strong slut-shaming culture at this camp at the end of the 1990's, something I didn't want to constantly fight. I gave in and I didn't talk to anyone about it for years. For a long time I blamed myself for being so naive, for being known to have had plenty of sex with the boy I dated throughout most of high school. I blamed myself for being stupid and not fighting back more or screaming or running away. It wasn't really rape because I didn't argue back when he said my not wanting it was a lie and didn't matter.

I held that night inside me like a concentrated ball of bile for a few years before I realized it was getting in my way. I didn't feel like I could trust anyone in my life, couldn't trust my own judgement. I took trivial gossip deeply personally, felt helpless to do anything about false chit-chat, and felt irreversibly betrayed when rumors going around about me that were false and petty were not stopped and shut down by people who heard them and knew the truth. I let a lot of friendships fall apart and held a lot of people at arm's length to avoid needing to trust someone with my secrets. Eventually, I did some counseling and opened myself up to real, intimate friendships and that night stopped ruling my emotional life Now it feels like an awful chapter of a book, instead of something I relive in stereo sound and full color over and over with no warning.

When I see the reactions to Dylan Farrow and others who come forward and name their abuse and abuser, and those reactions include people who blow off the accusations or rate them against a public persona or a body of work, it makes the bile rise in my throat. I have avoided talking even semi-publicly about what happened to me when I was 18 for a long time. It even took me all this time since Farrow's story broke to go from "I need to write this" to "I am writing this."Our culture could do a better job of supporting survivors and removing the shame  and incredulity directed at them when they share their experience. The statistics tell us that there are a lot more women and men who have been sexually assaulted than we can imagine just by looking around, but every story that is shared by a survivor helps to strengthen us all against rape culture. The more real people tell their stories, the less acceptable it is to hear rape jokes from friends, child abuse jokes in stand-up sets by comedians like Aziz Ansari, reasons someone had it coming when they were assaulted. I don't have a whole lot of readers, but for those that do peek in on my blog now and then, I hope that knowing my story, the story of someone you know pretty well by now, will be a drop in your bucket. The more drops, the easier it will be for others to tell their stories instead of hiding them in a place that feeds sadness and shame.

I love you guys. Thanks for reading.

Monday, January 27, 2014

oh, me.

Oh, me. Where are you taking me? A chair or a bed propped up with pillows with a humming lap warmer we use to tinker and paint, building modest homes for virtual souls from the ground up. Little scaffolds, bits of colored scrim, windows that open to precisely set pictures. In stages. Let's build stages for others to play on, some who will drift by, some who will come home. Oh, let's leave what we've built for others and paint on elsewhere. Let's take our contraptions of plastic and celluloid and enshrine everything holy. Take me over the deep ocean to a small land so I can capture the light off flowers, off the surf, off faces so beautiful simply from smiling in the sun. But islands are small and I can hear the music of the sea calling as it ebbs and crashes into a walkway made to translate the ocean for people, so we can hear her song in its open, sonorous voice. Let's scoop up our two ears and pad through the sand in search of monoliths to climb. Let's embrace craggy rock faces with our whole bodies in different shapes until we see the desert stretched around behind us and feel the rocks so warm. Let's march back to the woods with scratched elbows and burnt knees and eyes of sunlight and drop it all into the dear river so the bundle of parts can float along beside outcroppings and trees and let the roll of the river shuffle all the parts back together so they can be home. Oh, me. We do miss adventure.

surfing birthday

I'm going to Hawai'i! I will be attending Camp Koru in May for surf & paddle board camp with other cancer survivors. Camp takes place over my 31st birthday. What an excellent birthday present!

Ed understands my excitement

Today is day 192

My memory is still damaged from the BMT. It doesn't help that I spent two years on a variety of strong medication to keep my chronic pain under control. I can't remember a lot of details from things I have read or seen in the last few years, and sometimes things I do remember get a little scrambled when I try to recall them. Trying to have pop culture conversations can be a little embarrassing, though I get the benefit of re-experiencing a story with a fresh mind if I want to come back to something I know I enjoyed but remember foggily.

I am trying to learn javascript, and it is making me crazy. I refreshed my HTML and CSS knowledge without much effort, but learning a new language is harder than I expected. I've been splitting my learning between Code Academy (which has a handy experiential tutorial, but is sometimes buggy) and w3schools.com (which is information-rich, sometimes to a fault for a beginner), so I have everything I need to know at my fingertips. Still, I have a lot of moments of staring dumbly at my screen while I try to remember something I learned five minutes ago. This is tough. I am used to learning everything quickly, processing new information easily, rarely slowing down. What gives me hope, though, is that my brain seems to function a little better every day.

Exercise seems to help. The more I can get moving, the sharper I feel. I guess that should be obvious, what with improved circulation and all the science behind exercise and improved mood and mental faculties, but I tell you I am living it. Usually, I do 30 minutes of recumbent bike and 15-20 minutes of strength-building like resistance bands. I just got into this "30 Day Shred" video series put out by Jillian Michaels, which is maybe a little more intensity than I need but it burns soooo good. I made it all the way through for the first time last night and today I am still feeling a little wimpy. I was nervous to walk down the stairs this morning! I'm not an idiot, though, so today I am taking it easy, doing a little flow yoga, and enjoying my day. I also took a break from javascript and am having a little "weekend" kind of day. I have to remind myself that if something is wearing me out or making me feel nuts, I need to take a break and shift gears so I don't burn myself out.


Saturday, January 4, 2014

go, lil' immune system!

I had a gyn/onc check-up yesterday and the doc said shit looks awesome down there. My immune system is kicking the HPV's ass. That's right, the devil virus is getting beaten down and I am DESTROYING IT WITH MY OWN CELLS. Fuck to the yes.