Day 706: human AND dancer?

10 weeks since my last post. I may do better as a writer to be more disciplined at this, but honestly, I just wait until the impetus to write starts bubbling up. And it's been bubbling for the past few weeks- and after so many things happening, I finally have a moment to sit and write it out. My friend today asked what it would be about. I answered: "I don't know yet" because I don't. This blog has been a discovery for me, nearly every time I sit down to type, I have almost no idea what I will write about, and I make discoveries about myself and my life as I write. So here goes.

[edit: Upon reflection/re-read, this is serving as a catch-up post for people interested in what I've been up to, and not necessarily all of what I've been thinking about, which is usually somewhere between crying over beauty or being crippled by existential terror. But that's always sort of thrown in I guess. There's more and more still waiting in me, but I think it shall wait for its own blog post.]

I'm sitting in an unfamiliar kitchen in Ipswich MA where I am dog/house sitting. The pooch is an adorable, loving 11 year-old chocolate lab mix, and we're best buddies now (it's my second day). I may not need a shower as I've been licked head to toe by this baby.

I'm thinking over what has been crawling through my mind these past few months- and much has happened: good and bad things; and as always, Life showing itself truthfully. I 95% moved out of my old apartment and into my new apartment this past weekend. I can't believe I've moved so many times, and each time it is so similar; too similar. First, moving is sooo fun. In addition to being anxiety-ridden and stressful, I am seemingly always the last person to leave an apartment (read: I am responsible for cleaning the entire thing). Thankfully I still have another weekend to move the rest of my stuff (HOW SO MUCH STUFF?! HOW) and to clean it all. I've been fortunate to have time to move; the usual move out/in and clean all in one day is a nightmare, and I'm pretty sure everyone has experienced this at some point.

Good news on the goal-front! I have traveled a bit. I am making it happen, sort of. I haven't mentioned it yet, but I went to Southern CA back in April, and though it was the COLDEST WEEK in recent memory (WHY, HOW), it was more cleansing than I could even understand until I got back to MA. I've not traveled too much in my life yet, but that trip- though I spent many (too) many hours in my rental car driving all across the (Southern CA) world- it was healing and just what I needed. It was a difficult winter (yes, didn't we all love it), and I was seriously getting ready to move out to CA sight-unseen, but decided to take this trip first. I now don't have the urge to move out there, at least not at the moment, but just going on a vacation (my first personal vacation! ever!) cleaned me out and refreshed me in a way I didn't know it could.

I also just got back from SCOTLAND. Yes. International traveler, me. I went to Edinburgh for the Fringe Festival and it was divine and difficult, both of which I was anticipating. Edinburgh is a very walkable city, but it is also mostly hills. This was tough for my body, and though it got easier every day, it was still pretty rough and I was almost always tired. It was also quite chilly (though apparently the week I was there we had some of the warmest days in recent memory... I guess good karma from my iceberg CA trip?) and I am a perpetually cold being now, even when it's 70.

I first went to the Fringe Fest in Edinburgh back in 2011, and I saw some work there that completely changed my life. It inspired me to start my own theatre company here in MA, and I've been longing to return ever since (on a side note: a few months before I was diagnosed, I was planning to go back that summer with my sister). So in going back, of course I wondered if I would see anything that would break me like my first time in Edinburgh.

...It happened. It took until my second-to-last day there, but it happened. I almost missed the show because while standing in queue, I suddenly got a massive coughing attack (oh yeah, I got a great chest cold about mid-way through the week. Nights full of feverish delirium. Sweet) and had to step out of line while they let everyone else in. At the literal last second, I was finally able to compose myself and climbed to the very back of the stadium seating (which actually turned out quite nicely: I was able to see the entire stage, and being a shorter person, this is not usually the case.) The show was a physical theatre piece called Institute by a UK company called Gecko. It was absolutely brilliant. I could attempt to talk about it for a while, but honestly, physical theatre and dance is always it's own, usually wordless language. I would find myself crying, not even entirely sure why.

After it was over, I stumbled out of the venue, put on my sunglasses and tried not to burst out sobbing on my way back to my flat (thankfully not a far walk home). I couldn't speak. And when I finally could, it was tearfully to two girls who were in my flat, as tried to explain what I had just witnessed. They had to leave for something else, and I went to my room and lay on my bed and cried for a while. Seriously, just laid there and cried. I wasn't trying to "process it" in any real way, but rather just let the experience wash over me. And it still does.

The next day, my last day there, I went back to the venue after the show got out because I heard that the company actually comes out afterwards to chat with people, which is incredibly generous especially after giving everything on the stage! It was amazing to talk with them about their process and their different paths to finding themselves in a physical theatre company. They asked where we "went"- what the show was to us. I spoke a little bit about spending a lot of time in hospitals (there was definitely imagery resonating there), and how we all try to care for each other even though we are failing at it all the time. I was trying to not cry. One of them asked me if I was a dancer, and I sort of stuttered and managed to burp out something about missing my chance. One of the company members points to one of the quieter members and says "Chris was a firefighter in California."

For some reason this stuck with me. I have spent so many hours and days being so sad and pissed off about how my "new" body fails and constantly disappoints me. From lack of mobility for so long, my muscles atrophied, and it's taking SO MUCH LONGER to get back than I could have ever imagined. And my flexibility is so poor that usually when I try to stretch it just becomes a crying session. But seeing this company's work, and in talking with them after their show-- I have a renewed sense of vigor to build my body again. For the first time in a long long time, I feel like I actually might be capable of getting to where I want to go. I know that it will take a lot of work. Probably more than I even realize at this moment. But I want it so badly.

Before I got sick, the only real option that I was considering for continuing my education into grad school was physical theatre and/or clown school. People would chuckle after I told them, then I'd usually have to say, "no, but seriously." I don't know necessarily that clown school is in the cards for the future, but I feel this urgency--a vitality to jump start and get this body to a different place. I'm promising myself that the next six months are going to be dedicated to self-care in the form of HEALTH: building muscle and flexibility. Let's do this. I've always felt that I could have been a dancer. And now: who knows? Maybe I will be one.

Day 635: Art, Risk, Freedom.

I'm writing on a Tuesday evening, after a long day of work. Hey! I've started work again, at the cafe I used to work at before this whole shebang. I am very happy about it, and especially because it seems to be going a LOT better on my body this time around. And it's good to see the old faces coming in. I really have been getting stronger, and my body is approaching health (APPROACHING HEALTH! NEVER DID I THINK THESE WORDS WOULD LEAVE MY CYBER-OR-OTHERWISE-MOUTH). Still approaching, though. We move in waves, you know. Some days are good, some days I feel mysterious nausea and tingling in various parts of my body and the spasms take over... Every day is a Bertie Botts Every Flavor Bean.

But let's talk about good. 

My theatre company has put up another show! Can you believe it!? I really almost can't, except that it's happening already. I've directed and produced another original production: Between. Which, is an interesting title for many reasons, now that I really (have time to) think about it. We opened last weekend (it was fantastic), and we have another (final) weekend coming up. The show is joyous and full of play and imagination; but also doesn't shy away from real things in life. I always hope to strike a delicate balance between beauty and terror, to use Rilke's words, because that is what I find life to actually be. Somewhere either in beauty or terror, or someway moving or traveling between (see what I did there). It's actually a prequel to our first show, which was my senior thesis in college (we were not then officially The 5th Wall yet); The Wells of Fancy Dry. Both shows center around a little girl and her father, and some other...interesting...characters in her life. I have loved watching this show unfurl, and I can't wait to see how it grows and evolves this coming weekend.

You see, we do what is called intimate immersive theatre: theatre that is all around you, and in small groups. There is no formal 'seating' where the audience "sits", and no 'stage' where the actors "act". I usually call it part art-installation, part-interactive theatre. Though honestly, I shy away from the term "interactive" because for so may people that is a huge turn-off and the baggage of the term gives the wrong impression about what our company does. We endeavor to create theatre that is accessible to everyone. I love having people who have never been to the theatre, or who do not consider themselves "theatre-goers" in the audience (I love all the theatre peeps too, don't worry), because they don't know necessarily what the "rules" of theatre are. And here at The 5th Wall, we are not rule-followers, certainly not in the traditional theatre sense. It follows my true heart in that we carve our own path, and we create stories and characters and worlds that are platforms for experiences for the audience. Because part of our mission statement is about creating together: a safe space for both actor and audience to create stories and play. Just as most of our work is devised (ensemble-created), our end product is completed by the audience. Every singular performance is unique because of who is there. Every night, my cast faces the ultimate challenge of an actor and an ensemble: to perform a show with a character with whom they've never worked with; and often, never met: the audience. It creates some pretty spectacular once-in-a-lifetime experiences, for everyone involved. This is where our company name comes from. Some of you may be familiar with the theatre term "the fourth wall"; for those of you who are not: this refers to the invisible "wall" between the audience watching and the actors acting- sometimes in Shakespeare for instance, a character will 'break the fourth wall' and speak directly to the audience). With our company, we (almost/usually) altogether throw out this concept, and instead, draw a "fifth wall": one that separates us (the actors and the audience) from the rest of the world: from cronos time, from reality and all of it's negativity and self-doubt, from age definitions, from troubles big and small. While you are in one of our shows, we hope you are able to relax and feel safe to create art with us, and a singular performance is a special experience shared by those who were there.

It's a huge risk. Every production is a risk. Every single show is a risk. Every productions that I have directed (and so far, I have directed all of them for our company), at some point (usually towards the end when its getting really hard, and anxiety crunch-time is crushing me) I vow to never do this again. Whether it is theatre dramatics or just post-show amnesia, I always find myself back at it sooner rather than later...and the cycle continues. We take huge risks. It is a huge risk to throw your artwork into the hands of other theatre artists. Ensemble. And then a whole other risk to then throw that artwork into the hands of people--our audiences--whom I believe to also be artists; and I don't care at all what anyone says to the contrary. We were all children once, and all children play without any self-judgement. And that is true art: complete freedom to create.

And if you're still unsure about "interactive theatre" just know that we've had many interactive-theatre avoiders and (yes!) introverts come to our shows and truly enjoy our work. Seriously I am not making this up. Our greatest goal is to be an invitation to play- however much you want to give (or not) is perfect. This is what I always tell my actors. Come as you are, you are perfect.

Everyone has in them, somewhere- even if hidden- the potential for play. And if you've forgotten or misplaced it, let this space unlock that part of you. We were all children once. And children know how to create freely. 

So, if you're in the Boston/North-Shore area, you should come check us out. You can buy tickets on our website: the5thwall.org. I hope to sell-out this weekend. And all profits go directly into the company for making more art, and paying for rentals etc. I do not (yet...) take any money from this, but we hope to slowly start paying our actors as well as other collaborators (some collaborators we can pay; a humble sum yes, but pay nonetheless). So tell your friends. Bring your kids. We want everyone. Come as you are, you are perfect.

and also here's the title logo and poster that I designed. I wear many hats in this company.

Day 607: Two Years.

To use a borrowed phrase, everything is illuminated. The past few weeks especially, I have watched as the flood waters came in. I have been overwhelmed by the power of all the energy and the prayers and the words and the cards and the gifts and the time: the hours days weeks years and the people people people people. You guys, people. Human. Beings.

These days I don't know where to start anymore. When people ask me how I am, or how it's been, or how I've changed, or who I am now. I usually stumble out some form of an answer-- one that doesn't seem to make sense even to me. I feel like I am in a watching stage. Listening stage. Accepting stage. These past couple weeks, or months--I haven't been counting. It's not that I don't have things to say, or that I don't have things in my head. It's just maybe I'm often tired of talking for now. I'm learning about how it's been, how I've changed, and who I am now. I've been talking and talking and writing about it for a while, and now I just need to sit back and observe.

But something else is bubbling up. Gratitude. So much pure thankfulness. For so many things, but especially people. Too many people to name. I am shaking my head as I type this because it's literally beyond grip how many people, and how thankful I am for them. I am washed over with gratitude. If if wasn't what is feeding me, I would be drowned in it. I want to wear it like a blanket, or a robe, or a crown. I want to point to it like a nighttime field of breezy grasses, loud with peepers, with dark outlines of heavy spent sunflower heads bowing to the ground. I want to scatter the ashes of these past two years over the whole earth, thanking every human who has breathed air with me. 

You can not begin to imagine that any list would suffice, but I endeavor anyway because I must try. May chemo-brain be revoked for a few minutes. May you forgive any forgetfulness at the shrine of chemo-brain. And also, at the shrine of human-ness.

To my family. To Rie, you sweet, sweet darling. My protector and strength for so long. You sat next to me, held my hands, and held me up--sometimes very literally. My heart hurts over you. To my Mom, with the most appropriate name, Joy, who looked me in the eyes after I finally stumbled out "I have leukemia" and said "Okay. We're gonna do what we need to do." To Sar, for your quiet strength and humor. To my Dad, for many things, but especially for holding all the financial and insurance strings and somehow making it look like a kite. To Jacob: you precious, sensitive, funny sweetheart boy who reminds me to "Look up to the sky, Aunt Bekah. Look up to the beautiful sky". To Grammy and your cards and gifts and love. 

To Ed who shoved the unwilling me into his car and took me to the ER. To the YTC staff who took over for me opening night that fateful weekend. To nurse Jen who, of her own intuitive choosing, took the blood test that discovered it all. To Zach the EMT who held my hand in the back of the ambulance to Boston and who told me "You're gonna kick this in the ass." To the nurse who gave a paper flower to the old man in the bed across from me that first night in the Brigham and Women's ER. You're beautiful. To 700 year old Mary, my first hospital roommate, who blasted infomercials all night and tried to sneak a cigarette. May I endeavor to learn from and attain your feisty, stubborn spirit.

To my incredible oncology and transplant teams. To Gabby and your smiling face. To Sarah who performed the least painful of all my bone marrow biopsies. To Dr. Ho. To Erin. To Jess. To Lisa and Amy Joyce and Margot. To Nurse David in the ER. To countless other nurses, aides, examiners, technicians, transports, housekeepers, phlebotomists, and fellow patients. To the Infectious Disease doctor (his name is escaping me) who still waves and yells hello from across the room just as the elevator doors start to close, because he is that kind, and insistent that I am his favorite patient, to this day. To Dana Farber Cancer Institute. To Karen for listening and for your intuition. To the fellow masked-and-gloved old man who asked me to dance in the waiting room. To my soul-sister reading Anne Lamott on the 8th floor when I was 12 days out who told me "Just keep going." To Becca, for writing me that note. To the gentleman who got the call about finding his donor while sitting across from me. To Bambi. To Theresa. 

To Martha, Kim, and Justin. To Garet, Gail, Adele, Amy, Dick, Deb, Barbara, Lindsay, and Kathy. To Livestrong for encouraging me and forcing me to lift ping pong balls, then 3lb weights, and now 8lb weights and beyond.

To the saints who have carried me in their words. I cannot explain. I am still here because of something that you wrote. Rainer Maria Rilke. Mary Oliver. Jalal ad-Din Muhammad Rumi. Czeslaw Milosz. Anne Sexton. Martin Buber. Anne Bogart. Hannah Arendt. Anne Lamott. Abraham Joshua Heschel. Carl Sagan. The list goes on.

To my teachers and friends. I literally cannot name you all because I would be here for actually ever and my limited human/chemo brain would cause me to forget someone, or I would die of old age before I was done. If you're wondering if you're on this sacred list, you are. You are. You are. You are. Freaking Hump Day videos, you guys. Reading Steinbeck to me while I lay in bed. The Bash Leukemia Bash, to the artists and friends and givers who showered me with such love that I cannot contain within words. To mewithoutYou who came to play for me in the hospital because I couldn't make it to the show, to talking of Martin Buber, and grandmothers. To my theatre company, The 5th Wall, who waters me to grow like the stubborn plant that's prone to wilting that I am. To my readers. To all my soul mates. And to my donor: whomever, wherever, however you are. I love you.

And I raise thanks and gratitude for my body, the greek goddess who has marched, charged, wept, laughed, jumped, slumped, watched TV, danced, slept, sat, drooled and carried on through all of this. To my muscles that are growing and slowly learning how to bend again. To that whatever part of me that I am discovering, strangely: like a desperately old and yet new, friend; that small voice gaining sound, that part of me that endures beyond all things and throughout all my years crawling and climbing the mountains and crevices of this planet. To these same knees I used to scab up as a kid. To these same feet that have been carrying me around all this time.

You all saved my life.

Yes, in many many ways, two years feel stolen from me. So many things in and around me were derailed. My friends and family held their breath for a long long time--and we're still holding it, in some sense, though it's gotten easier, and maybe we take turns. I held my breath. I'm starting to exhale now. And when I exhale I try for peace and understanding and acceptance, but there is anger here too. I don't understand why bad things happen. Cancer is just one bad thing of so many, it's stupid. Philosophers and theologians and artists search for the answer, but it will forever be elusive. What can we do in the meantime? That's my quest, I think. Yes, I feel robbed and sometimes I feel really pissed off, and scared. I'm scared that it will return, that I will have to face death so close again. There are many things I can't control. But there are things that I can. And noticing, listening, watching things is one. One for now. And I now have a human body that I understand more intimately than ever before, and a human soul that I accept and trust more than ever before.

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here's a poorly executed collage of small things

 

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One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice--
though the whole house
began to tremble
and you felt the old tug
at your ankles.
"Mend my life!"
each voice cried.
But you didn't stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do--
determined to save
the only life you could save.

-mary oliver, The Journey

Day 559: more human

Just a bit over a year ago, this was the entry in my private journal:

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every day is a drudgery waiting for something in me to completely give up and die by organ failure or overdosing pills i want it over. im tired of keeping it up. i'm tired i can’t sleep. my mind is a blank white room with no windows

---------------------

I thought I could never emerge from under that depression. Everything that I had attached to my meaning of self had been stripped away. I had nothing to give. I felt my personality had truly died, I was just an endless cavern of need, and the world felt like a constant flashbang: stunned and wide-eyed ringing but out of focus and I couldn't shake it.  Who I was poured out from under me like a bowl of sand.

And now, I can look back. I am actually looking back on that time when I couldn't see a future, as in, I am past it. I really am in total shock that I have somehow existed this long, and through all that has happened. What has actually happened is a mystery to most people that I know, save for a precious few; and even then, I'm still the only one in this body. I have written off and on throughout this thing: some of it made public through this blog, and many short ramblings of days when a few depressive words was all I could muster. But there is so much that went undocumented, and so much that I don't even remember (that may be for the best, honestly). I am astonished to find myself on the other side of these almost two years. And for that, I can only attest to the raw human spirit. I basically feel like a witness to this. I've discovered, after the fact: something in me, perhaps inherently--and it is not something that I feel I have cultivated with any real energy. Usually my energy depleted by just existing every day, and the little animal of my soul nosed around in the dark, so hungry. I had my plans, of course. Cultivate an inner universe. Let everything happen to you. I tried my best, but most of the time it felt like I was dragging my lump of a frail body behind me, aimless and stumbling. But that human spirit emerged, like the runt of the pack: weak but determined. 

And I even find myself on the other side of the last couple months, in some ways worse for wear. Thanks, winter of the soul. But my mind is continually changing; striving (I hope) towards enlightenment, or peace, or something.

So far the answer lies in what I have come to understand of the world: there is no perfection. There is no one goal, no one place where we all gather and do the peace dance forever and ever amen. There is no one right choice and one wrong choice. I am learning that life is not a linear groove drawn in the ground, stretching out in front of you. It's not clean, either, Bekah. It's so goddamn messy, and you bumble along until you find something that you can hold on to for a while. And then you let it go. Or it lets go of you.

I'm not trying to be fatalistic. But there's something about who we are throughout our lives, void of whatever we are holding on to, or whatever is holding on to us. Human imagination: the raw human spirit that can think beyond the hole you're in. It's one step to conjure the million possibilities. The next step is choosing and doing. As far as I can see, the next rung on this ladder out of here is human agency: the capacity to act in the world. I believe it has the most to do with who we are, on a basic level, even more than what you actually "do". I’m interested in the person who is making these things happen. It’s something independent of who you know, what you have, what projects you are involved in, what you do for work. True freedom is being able to be who you are, where you are. And maybe if I can find that freedom, it will allow me to make a difference, somewhere somehow in a small way. When I think about what I am actually “accomplishing” in “the world” right now, I start to feel bad about myself. I don’t have a job, it’s been months since I’ve had a real creative project, I'm sick a lot, my body is a shitball, I don’t see people that often, I don’t go on vacations, I don’t have a career I don’t have a house I don’t have a boyfriend I don’t have a dog I don’t have a wittle bundle of joy I don’t have a five year plan, and my room is a mess. I’m not saving people.  The causes for which I feel deeply are plugging along without me. I don’t have a field, I don’t have a plow.

But I am sensing, over everything else, the importance of being an authentic human being on this hilarious rock flying through a dark universe. And that feels more real and enduring than any other one thing.

My not having most of that list above doesn’t bother me too much. It's not my goal in life to get married and have babies. For some people, that may be their most prized wish, and I am not hating on that at all. I find what ends up bothering me the most is the missing out on things that I wish that I was apart of. I want to do things that matter, I want to make art that reminds people they are human. I want to be a part of the movement to start saving this planet. I want to have a garden, I want to be flexible and strong. I want to feel beautiful. I want to be happy.

But none of those things will make me happy. Maybe the act of moving towards them will. Putting in the time and the energy. But maybe being a true human all the way through my life will. Finding the something in me that carries through all these hard things, that endures through jobs, hard conversations, relationships, health problems, trauma. Simplifying the society-made and self-perpetuated pressure on me to be something, and focusing on being Someone.

Sometimes people ask me how I am different now, and I have been asking myself that too. Now, on the almost other-side of cancer as a young person, how has it changed me? Well, I feel a sense of my self that wasn’t completely present before cancer. It’s hard to make that sound anything but corny, but I really mean it. 

I’ve spent a long time referring to pre- and post-cancer Bekah as different people, mostly because the difference is depressing and I long for the old me. Sometimes in my mind I see this dichotomy: Pre-cancer Bekah was strong and flexible multi-tasking never-sick I-don't-need-you-to-lift-that-for-me dancing-and-cartwheeling girl. Post-cancer Bekah is flabby boney blotchy-skinned less-spunky rubber-band-muscled somewhat-bald can’t-stand-for-more-than-an-hour lonely chemo-brained sad girl. But I have been trying to stop doing that, because ultimately, it’s detrimental to progress. So I'm practicing autonomy from the ‘I used to be’s. Those comparisons suck. They paint a picture of two different people: one better than the other, but I’m still the same person. And it ignores the things that have grown: my ability to handle being alone, my deeper understanding of human trauma and how we deal with it, my personal coping mechanisms and skills, my ability to slow down, and how I relate to people and the dynamics of relationships. I have learned that everyone, no matter what age, is still learning something. And again, it sounds super corny, but I have gained an understanding of myself that I didn’t have before; a baseline calm has emerged. I have a sense of who I am that endures through my whole life, regardless of good times or hardship. And I carry all that's happened to me, but it isn't all of who I am. It’s not a perfect picture, I’m not a superhero gandhi. But I feel like my interactions with the world have shifted: I see myself differently, and I see the world differently. I am more in tune with myself and I feel more peaceful, in general. I can look back, and forward, and I see this whole thing more clearly--even the fact that I can’t see it all. I feel like I understand the point, more than I did. At least, today. This doesn’t mean I don’t get agitated, because I do. I get both rightfully and wrongfully agitated: at love and injustice and at dirty dishes and bad hair days. I’m still a human. No, I’m more of a human now, I think. I am more human. 

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Everyone should be born into this world happy
and loving everything.
But in truth it rarely works that way.
For myself, I have spent my life clamoring toward it.
Halleluiah, anyway I’m not where I started!

And have you too been trudging like that, sometimes
almost forgetting how wondrous the world is
and how miraculously kind some people can be?
And have you too decided that probably nothing important
is ever easy?
Not, say, for the first sixty years.

Halleluiah, I’m sixty now, and even a little more,

and some days I feel I have wings.

-mary oliver

Day 527: FIGHT

Tonight I am thinking about human imagination.

Everyone is stuck somewhere. And if you aren't, please send help to me and the rest of humanity back here, we've got our wagon wheels stuck in the mud and grandpa's dying of dysentery.

But there's one thing we do have in us: the ability to imagine. This tool is afforded to human beings. Sometimes this tool is laughed at by others or stomped out by growing up too much. And I'm not just talking about daydreaming here, or about thinking up the next big iPhone app. I mean true human inventiveness. The raw ability to take shitty circumstances and find a way to live with them. And not just live with them; live through them. Survive them and be better afterwards. To be able to look back and see the triumphant tracks of a slimy mud-covered human body that dragged itself through that sludge. If you can't see a way out, you aren't imagining big enough.

Perhaps time will make me a fool, because I know there are some things that can't be changed in life. But I think a lot of the time we give up too early.

I don't want to give up too early. I want to fight. 

But it's hard to accept what is. I know that today is today. I know that today I can’t fully extend my arms because the muscles are so contracted, and that my lung function has decreased. I know that it is what it is. And I hate what it is. I hate that I am trapped in a body that is not mine.

I have also been fighting. I started the Livestrong program at the Y two weeks ago. Last week I went to a stretching class at the Y, and the instructor had told me previously that it was incredibly low-impact and that anyone could do it. As we went through the incredibly elementary stretches, I was keenly aware of how far away I was from my body. The body that I know, the body that is gone now. I couldn’t complete even 15 minutes of the class because my muscles were spasming and I was getting upset. I left and went to the bathroom and cried.

After expelling my almost-tears I went to the large studio next to where the class was being held. It had rubber floors and a wall-to-wall mirror. It is something completely different to look at your body up close (the way you do at home) than to observe yourself from afar. I walked into the empty studio and looked at myself from across the room. I looked hollow. My shoulders stuck out. My nose was pink from crying, and I looked a sloppy mess. I rolled up the sleeves on my t-shirt and walked toward my reflection, trying to remain calm. I started to stretch on my own, the little that I could do without causing spasms. I tried to accept myself with my limitations. It is what it is. I looked myself in the eyes. But I started crying again, because it’s not fair what happened to me. It’s not fair. And I feel like a lost cause, a body too far gone to ever make it out of this sack of bones. Full recovery seems impossible. The steps that I need to take are so miniscule that it’s embarrassing and an insult. And then I cried because I should be thankful to just be alive. But it’s not enough for me, to just survive. I want to survive and be better afterwards.

And what is this "self" that I'm trying to get back? It's also not enough for me to wake up, go to work, make money, give it to someone else, and repeat. To live just to support the way that I live. That's not living. And sometimes we feel trapped in cycles that we hate. Consumerism, the Grid, "The Man", immigration laws, an abusive relationship, addictions, mandatory obligations, whatever it is. We can't see outside our own bubble because our bubble is so goddamn full of shit. A shit bubble. I'm trying to see if there is something else, here.

I need to exercise my imagination. Expand it bigger in every direction. I need to grow to believe in this wild thing: my body better than it was before cancer. To believe there is always a way through and beyond shitty circumstances. To get out of the pain cycle, the dull life cycle, the Rat Race. No one belongs there. To cultivate an inner universe that reflects the wonder, love, compassion, forgiveness and generosity that I believe to truly exist in reality; one that uses ingenuity and resourcefulness and determination. I'm going to imagine! I'm going to work! I'm going to put in the time! I'm gonna find a way out of every mud-stuck wheel! I'm gonna scrounge, scrape, pummel, hunt, rummage and explore until I find what I'm looking for! I'm gonna stretch one pinky at a time and lift ping pong balls as weights, if that's what it takes! I'm gonna keep fighting my way through this shit bubble, and (pardon my language) I'm f**n taking you with me! 
Come on, let's see what's beyond this thing!

 

Whoever you are, no matter how lonely,

the world offers itself to your imagination--

-mary oliver

Day 494: are we human or are we dancer?

I’m sitting and looking over the perfect white billows of comforter onto a completely white window. I am writing because I’m feeling snarky today. Something inside me is starting to burst, or bloom, or explode; pick your metaphor. I’m trying to find out what comes next in this life. I feel a sense of irrepressible energy and yet at the same time some kind of gross hindrance. I tell myself I am getting better every day, though the augmentation is sometimes infinitesimally minute.  A lot of the problem is physical. I feel trapped in a body that doesn’t work well. In a small way, I know, I am beginning to understand a bit of what it’s like to live with disability, or better put: I have begun to understand the true feeling of limitation. I have felt the physical effects (literal inability to do things) as well as the psychological distress of watching your body shrivel. The trauma of enduring a life-threatening disease and an almost equally life-threatening treatment, followed by a year of extreme muscle and bone density loss, GvHD and transplant complications, lung damage, and at times a stagnant brain...it’s aged me. I feel I have the body of an 80 year-old. This must be what aging feels like, but on an accelerated scale. This is life, folks. And I’m especially talking to you, Bekah. This is life. Bodies fail. I have hopes for where I will be a year from now, but I don’t actually know what will happen. People keep saying that I’ll get back. I'll get back to where I was before. No problem no question. But I don’t know that it will happen. I have to accept and love my life the whole way through it; or else I may come to the end and find I was waiting for something that didn’t exist. So I have decided to love even this obstinate and foreign time of my life. I must practice Love. I must practice Love. I must grasp today, and not wait for tomorrow or some body or life that I hope will fall into my lap.

I am managing to type right now; my hand muscle spasms have taken a short respite, perhaps to journey to other muscles that enjoy hosting a good seizure: neck and throat, both legs, abdomen and lower back, pick your favorite. It’s painful. My hands are always slightly swollen these days—in addition to the muscle spasms that make it impossible to do much of anything—so even when they’re not spazzing out, holding or opening things is difficult. I can’t help shovel snow because I have no muscles, and the bitties I do have start cramping if I exert them or stretch them too much/at all. My arms are essentially 2ft matchsticks. And considering my high risk for osteoporosis, this couldn’t be more true.

But even with these new spastic developments (which we can’t seem to find a cause or cure for), I’m still endeavoring to see the world anew. #2015yearofhealth y’all. And I’m referring to whole person health, not just healthy eating or weight. And I would like to take a quick moment to say that I am actually trying to gain weight this year. I’d love it if healthy eating wasn’t always about losing weight. Pinterest can’t help me at all because everything #healthy is low-cal or #bikinibodbound. Maybe people think I’m lucky? Doesn’t everyone just wish they were toooooo skinny? Bah. I just want to be healthy. I want to gain muscle and flexibility and happiness this year. I want to expand my circle of compassion, to revolutionize my idea of Love over and over and over again. These are my goals. For this year, for life.

Every day is a choice. And if I see it as a choice; or at least tell myself it is a choice rather than a chore; perhaps after time I will start to really believe it. I will practice loving the world. I will practice loving myself. Days can go by so quickly without any real accomplishment. And even accomplishments (I did laundry! I did dishes! I took all my pills at the right time! I ate three meals!) can come with with the feeling of it still not being enough. Who rejoices over managing to eat three meals? Who rejoices over laundry? This girl. Today she does, at least. Today, there is enough Love. Today there is enough energy and peace and compassion. Today I can surpass this fragile stupid body. Today I can celebrate this fragile stupid body. Today I will find strength in weakness. The Source is full, its waters are ever-flowing. This is the endless Ocean. Today, we are DANCER. I will raise my stupid matchsticks in the air and stomp my little 80-year-old feet, metaphorically.

The Source is full,

its waters are ever-flowing;

Do not grieve,

drink your fill!

Don’t think it will ever run dry—

This is the endless Ocean!

So what the hell, I’ll put on the Killers and bomb the f@$% out. I’ll read Rumi and weep my endless Ocean of dry tears. And then, I will love the world. This is the endless Ocean. I will love myself. I will love myself. I will love myself. I will love myself. I will love myself. I will love myself. I will love myself. I will love myself. I will love myself. I will love myself.

Peace and joy, kittens. Stay warm, stay happy. Stay Dancer.

Everything you see has its roots

in the unseen world.

The forms may change,

yet the essence remains the same.

Every wondrous sight will vanish,

every sweet word will fade.

But do not be disheartened,

The Source they come from is eternal—

growing, branching out,

giving new life and new joy.

Why do you weep?—

That Source is within you,

and this whole world

is springing up from it.

The Source is full,

its waters are ever-flowing;

Do not grieve,

drink your fill!

Don’t think it will ever run dry—

This is the endless Ocean!

From the moment you came into this world,

a ladder was placed in front of you

that you might transcend it.

From earth, you became plant,

from plant you became animal.

Afterwards you became a human being,

endowed with knowledge, intellect and faith.

Behold the body, born of dust—

how perfect it has become!

Why should you fear its end?

When were you ever made less by dying?

When you pass beyond this human form,

no doubt you will become an angel

and soar through the heavens!

But don’t stop there.

Even heavenly bodies grow old.

Pass again from the heavenly realm

and plunge into the ocean of Consciousness.

Let the drop of water that is you

become a hundred mighty seas.

But do not think that the drop alone

becomes the Ocean—

the Ocean, too, becomes the drop!

-Rumi