Published, Cancer Planet, Expectations and My Precioussss

Hello hello hello. NEWS FLASH I have good things to report after a long spell of not-as-good things.

I have the pleasure of being published by elephant journal again, and you can find the article here. Feel free to read it and pass it along to anyone who you'd think would appreciate it. The first time I was published by elephant journal was back in 2014, and this new article (like the first) is an adapted excerpt from this blog. The original post was written at my one year post-transplant anniversary. This article, To the Girl in the Waiting Room, holds close many of those same words- but I've re-written it a bit from the perspective of my current self: a little over two years out.

With another year under my belt, I was...well, not surprised really, to have a lot in common with the one year old me. I'm still struggling with a lot of the same things. Depression, frustration, etc. What I didn't really expound on in the post (both the original and in the new version) is the real let-down of being "one year out" (now "two years out") and having your expectations of where you should be crushed to pulp. I mean, the sentiment is there I think, as it does have a lot to do with depression and I believe it to be a pretty common feeling among cancer patients. Or anyone, really. We have expectations for ourselves: where we will be, what we will have, what we'll be doing... We have expectations for other people: what they'll do, how they'll treat us, how they'll react to us or a situation. And when the reality sets in and those expectations are not met, it can be crushing. Sometimes its a close miss, other times it's like you're on a different planet. So here I am on Cancer Planet. Yeah...Not the planet I was expecting to be on at 27, definitely not the one I thought I'd be circling the sun on for the last two and a half years. But even on your planet, Cancer Planet not excluded, you develop expectations of how this will go, where you'll be in some amount of time, etc. ...And then a giant meteor comes hurling out of nowhere and there's no Bruce Willis to save you.

Expectations are faulty: when they are unmet, they cause animosity in relationships, they cause self-doubt, fear, depression. And it's not like we can always help it either. So many of our expectations are subconscious, and sometimes they operate entirely in that realm: the subconscious mind builds these expectations, the expectations are not met, and then we're angry, frustrated, sad, upset, pick your adjective, and we may not even realize why.

I've been working to try to peel away my own layers in this respect: to have a deeper understanding of my own emotions in all situations in which I find myself. Sometimes it's difficult to understand- why am I feeling anxious? Why am I having a mental breakdown right now? Why am I angry? It's not always (ha-ha, almost never. Let's be real.) a rational one-to-one ratio of symbolism or set of chain reactions. But I am really trying to 'unpack' as they say, my emotions and try to get to the root source of them. Why am I anxious? I may not be able to go through this mental game while I'm having a panic attack- but maybe after it's over I'll think back and see if I can figure out a trigger, whether exterior or interior, that may have set it off. When I'm angry or frustrated (again, maybe not so much in the moment...work is work is working on it): what is this really about, under the surface? What is the expectation that is not being met? And what can I do about it?

My mother, in her great wisdom, told me long ago that almost every relational problem (people interacting with people: it can be corrosive!) stem from unmet expectations. I have discovered time and time again that this is very true. Whether or not those expectations were conscious, unconscious, rational or irrational... When they are not met, we respond with a negative emotion (again, pick your adjective). And I think, to dig even deeper into this, these problems really come from the fact that we are individuals. We are intrinsically different from each other. There is NO ONE like you. Not one other person who is like you in the entire world. One of my favorite quotes from Carl Sagan (of which there are many) is this:

"If a human disagrees with you, let him live. In a hundred billion galaxies, you will not find another."

And this gets at a True thing: each person, with their eccentricities and flaws, is singular. And I think if we really take this idea and honestly hold it in our lives: we will be overcome with awe. Human beings are incredible. They are also incredibly complicated, and our emotions get more complex as we mature and are able to simultaneously exhibit multiple deep-seeded emotions at once. It's a really weird and often irritating thing that we do.

So, to backtrack here a bit after all that rambling- I'm trying to understand and place myself as a part of this Awe. I disagree with myself all the time. "C'mon body, you stupid stupid lump!" "Seriously, brain? You wanna go there right now?" *insert panic attack* "Are you kidding, muscles? How can you cause so much--AHHHHHHH" (muscle spasm, tears, anguish.)

But I'm gonna let me live. Because in a hundred billion galaxies I will not find another.

This is not meant to appear or manifest as self-love to the point of self-worship. I suppose there's people who struggle with that *cough-Trump-cough* and that's a different thing. I'm talking about the self-hatred that exists within so many. We need to view ourselves and each other as innately precious and individual. And we need to take the time to honor that preciousness by trying to understand ourselves and others better. Our true motives, even if the result is flawed. After the panic or anger or embarrassment subsides, to take a minute to figure out the under-workings going on there. And perhaps, with enough practice, to be able to do this sort of mental exercise in the midst of difficulty: to see ourselves as precious, as the other person (if another is involved) as precious, and act accordingly. To take care of what is precious.

So here's to you, My Precioussss.

No but really.

In other news, anti-depressants can really work. I started a new one on top of the one I was already taking, and it is helping a great deal. I am very pleased to to say so. After a very long time of a hard time, it's nice to have a more steady emotional state. At least, without the increasing depths of the low times. Those haven't been back for a couple weeks.

And I'm going after my goals. I'm writing more, again, as I'd hoped I would. I'm exercising (AKA KICKING MY ASS INTO GEAR OMG) and building muscle and increasing my flexibility. Every morning I wake up (IDK how long this will last; I hope a long time!) and I think: NO STRINGS ON ME. Going after my goals like a mofo. YOU HEAR DAT EXPECTATIONS? But I also know it won't be a constant happy road. I'll hit bumps, plateaus and valleys like anyone else. But I'll let me live. My Precious.

ode to the shit candle

I always find an incredible amount of peace and catharsis after writing- whether it's a post, a letter, in my private journal, creatively, etc. I almost never know what I'm going to write (or sometimes even what I am thinking about) until I am in the middle of writing. I wrote that last post in a moment of clarity during a sea of recent despair... And I can actually say that just getting it out really did change me. I'm not out of the woods yet, of course. But I never seem to feel quite as grim after a 'downer' of a post. It doesn't last forever and I know that. But I'm trying to learn and employ good practices that have that cathartic effects- writing being one. Writing is my shit candle. More on that in a minute.

It has been a long road, much longer than I could ever want or expect to travel along- and it is so hard to keep getting up after the inevitable knockdowns. I know I am allowed to have bad days, which is why I even allow some of my writing to be viewed publicly that expresses hard things. But I am learning so much about who I am, despite and throughout all of the shitty circumstances; and that is worthwhile at least. I started seeing a new therapist closer to home and it's going pretty well so far, though it's only been three weeks. Therapy takes a long time too.

Right now I'm trying to focus -again and again and again ahh- on getting healthy, and especially emotionally because I don't think I can make much progress physically without a mental state to support it. 

When I studied abroad I had a professor who oversaw one of my more difficult projects- I was reading and writing a paper on a particularly arduous book called I and Thou by the philosopher/theologian/Jewish mystic Martin Buber (whom I deeply respect and admire) and I had hit an absolute solid wall on being able to parse through the meaning of his words. The book is translated from German and apparently even German-speakers have loads of trouble with it! (Glad I chose one of the more abstractly grueling books for my project...) 

Anyway, one night of particular dismay, I knocked on my professor's office door. Before I proceed, I just want to give you a background picture: we were at the top of a mountain in an old logging community in Oregon, 45 min away from civilization. We read. A lot. Sometimes I read for 8 hours or more a day. Philosophy and social criticisms, poetry and prose, and on and on amen. I had practically sworn off reading for the next decade by the end of those four months... (We wrote a lot too, and I do credit this semester as one of the turning points as a writer.) We had electricity and running water but not much else. My professor's office was a tiny closet of a room in one of the old buildings on the top floor: slanted ceilings and everything. There was one tiny window, makeshift shelves full of books EVERYWHERE lining the ceilings and floors in every direction, along with papers, notes, pencils, scientific paraphernalia in various states of being taken apart, and fly fishing lures littering the entire place. Somehow he knew where everything was though...one of those guys.

I was probably on the verge of tears because I had been trying to dissect this book for hours with absolutely no progress whatsoever, and the deadline for the paper was fast approaching. He talked to me for awhile about Buber- told me that bit about his German philosopher friends who struggled with the original text, and how there are two types of philosophers: some who meticulously plan out their thoughts and use extensive rhetoric to back up their reasoning, and write lots of responses and variations based upon criticisms and challenges from other thinkers. And then there are others (like Buber) who, and I quote: "just shit a brick and spend the rest of their lives trying to understand it." (That's a direct quote. I remember this conversation clearly even though it was over 5 years ago now) 

He also told me about the "shit candle". Here's how it works: it's a candle, usually black (any candle will work, really. But black gets at the sentiment much better, haha). You ceremoniously light the shit candle when you have metaphorically hit a wall. You sit next to it and watch it burn for a while, allowing your anxiety to burn away with it, letting the candle represent all your negative thoughts about yourself, your situation, whatever. It's looking at that candle and saying, "Yep, things are shitty, and I'm letting you [the candle] represent the shitty." And then the shitty begins to feel much smaller and less invasive. And when you feel it is time, you can start again. 

So I went back to my wood stove cabin, lit a shit candle, and sat with it diligently and, I guess, meditated for a while. It forced me to take a break from my work--and from listening to the voices in my head who were telling me that I was an idiot numbskull with no potential for anything. 

Eventually I picked up the book again (it was probably the next day, many hours later) and miraculously, I could move forward. Words that had been nonsense yesterday were suddenly making sense. The shit candle worked. 

Philosophy is like that: it's a state of mind that takes practice to maintain. Another transformative professor of mine in undergrad philosophy once told me how much practice it takes to be in that state of mind. At first it may only be 10 minutes you get a grip on it, then like slipping out of orbit you jettison off into deep space with nothing tethering you to what you were trying to understand. But with time and practice, you can start to hold onto that state of mind longer and longer. 

I think that mindfulness is also a state that takes enormous practice to uphold. But I also believe that it is important to bring mindfulness to all areas of life- especially when considering ourselves and our failures or shortcomings. Even if it's totally messy. To arrive at a place where we're able to admit we need the shit candle, then to light it, then to take a step away from whatever it was that caused the anxiety or self-doubt; "the wall": so we can see it with fresh eyes, and approach it with kindness. It really does help to have a physical thing sitting in front of you to take the place of the shitty. Part of being human I guess, we like self-evident tangible things.

So, writing is my shit candle. It cleans me out a little bit more every time. It's the place where I find out the most about my inner life; what I'm subconsciously saying to myself, causing myself to feel, or processing in a deeper way than I had previously understood. I do also still light a real shit candle once in a while.

I hope 2016 holds a bright light for all of us. With so many things wrong in the world it's hard to keep the chin up. Bad things happen and happen, and to good people. But I hope that even on those bad days we can remember there's a candle burning somewhere, or remember to light one ourselves. Even if it is a shit candle. 

happy 2016 from my Depression Unicorn

I've made some resolutions. Actually most of them didn't start as of January 1. I started them last year, but this year I want to see them come to full fruition. My "motto" for 2015 was "Year of Health" and while that was hopeful and starry-eyed, huge portions of that goal started slipping away as the year went on. No.1 I became a skeleton, weighing in at approximately my 7th grade body weight. No.2 My muscle spasms intensified and took over my life. And No.3 The combination of these increasingly serious physical symptoms resulted in possibly my lowest depths of emotional despair, ever. The dream of health seemed to slink away into the night, and I couldn't stop it from going.

At the present moment, though, I feel I can see things more clearly than most of the time; whether it's the espresso talking or not, I don't know, but here we are. I've come up with my motto for 2016: "there are no strings on me" in which I will attempt with great effort to seize opportunities and rid myself of self loathing and doubt.

I haven't held much back in this blog, though the droughts between posts I can tell you are often due to depression and general lack of interest in anything. I also have this feeling that every time I have something to say as of late, it's generally depressing. And I hate myself and I hate myself. And I hate that I am not myself, so much of the time. But the honest capital-T Truth is that I don't feel like a warrior anymore. I absolutely do not say this in any attempt to get reassurance from anyone. It doesn't help much to be told that "You ARE strong" "You're still a fighter" Yeah I'm fighting. I'm fighting but I'm fucking tired of it. I'm sorry to let people down in this mission to be the face of warrior-woman-defeats-cancer-with-smile-on-face. And I know people say "you didn't let us down" and maybe that's true IDK I'm not you. But I feel like I've let myself down. I want to be a fucking warrior but instead I'm worn out. I'm just over it, maxed out, DONE. And it makes it worse that I know other people have harder situations than the one I'm currently facing and they still have smiles on their faces, or at least hope. I'm trying for hope, trying to find it again. I want to believe it's not lost and gone forever. And yeah, people say, "you're still in there, B". B has taken a weird turn down a moody depression alleyway and it's pretty damn dark down here. When people ask how I'm doing, I can't exactly lie. I'm cursed, remember? Instead I weigh my true feeling against the relationship with the person who just asked and decide between frank honesty that usually ends up something like regaling my rampage through the land of misfit toys whist sort-of chuckling, or some vague utterance like: "I'm okay. Sometimes." she said, furrowing her brow and bobbing her head like an overeager dashboard Santa. Either way, still a defeated sad toy in most situations.

But now it's 2016, and we're feelin' good. Sometimes.

Again, it's not all bad. I laugh, sometimes. I had a good Thanksgiving, Christmas and New Years Eve. But I'm lackluster fist pumping at a (really sad, as in lame and despondent) pity party. Depression is a barbaric animal. It comes without warning, and even for someone like me who prides herself on being somewhat self-aware it still takes me by storm. And it's also a form of depression that I haven't dealt with before; my depression unicorn. A sadistic, aberrant unicorn... You know it's that thing where you have panic attacks due to the slightest provocation, or at no provocation at all. I'm still learning my triggers, I guess. Just sort of hard to dissect all possible things that could cause said panic attack while in the midst of it. I've dealt with depression for a lot of my life, and I've had anxiety attacks before, but not at this regularity. I also experience this odd sensation of paralysis. It's really hard to describe because it's completely irrational. I know this even when it's happening to me. But sometimes I shut down and curl into a ball on the floor crying for no real reason. Sometimes it correlates with when the sun goes down and BOOM down for the count. Or, I have plans to go out with friends- and even though I really really want to go (and should go, because in all likelihood it would be good for me, an extrovert) I can't seem to make myself leave the house. I sit in my coat with my shoes on, and don't move. Other times it's small movements like getting up off the floor or uncovering my face that I just can't do. I'm at war. Half my brain is telling me to get up GET UP. GET UP. MOVE YOUR ARM. DAMN IT MOVE YOUR LEG. While the other half of my brain, the part responsible for action, apparently, is unplugged and/or unresponsive.

I'm not sitting around doing nothing about it, though. But that has a huge part to do with my parents being supportive and helping me do things like make phone calls. I'm trying to get better. I just don't know how anymore. And I feel really really tired of trying. And I feel like a little shit for feeling that way, when so many people with worse medical conditions would love to switch places. And I wonder why I was given this chance at a new life, shitty as it is right now, when so many others don't. And I should be happy, grateful for this chance. I am grateful. I guess most of the time I just don't know why things happen the way they do. I guess there really isn't a reason.

It's just...recovery is taking way WAAAY longer than I ever was sick. and even though I was told this would take five years out of my life, I guess I didn't really understand what that meant, or I thought it would be different for me because I'm a UNICORN obviously and not 100% human and fallible. I am trying really hard to not let this discourage me, but it does a pretty good job. I'm doing physical therapy and it's usually been empowering. But I'm easily disappointed by this body of mine. I still get winded going up stairs. I'm frustrated that it gets sick so easily, and takes 6x longer to bounce back from anything than the average person. Just as I am finally getting over something I'm sick again already; plus its winter now so it's not even hard. Calling all germs, viruses, bacteria: come at me boys and girls. You love me, apparently.

But I do have goals. I'm trying to hold this year lightly in my hands, to not expect too much from myself. But I also need discipline to reach my goals. Even though they are not complicated in nature; they are complex to achieve and will take effort. But I'm trying to keep "the list" short so I may actually have a chance at accomplishing these for real.

Resolutions for 2016 there are no strings on me
1) Write more. Make this a habitual practice and dedicate time and energy to the discipline.
2) Stretch every day. I'm not kidding, B.
3) Build up dem biddy muscles. See addendum to #2
4) Travel
5) Dance
6) Love thyself, even the icky moments. Because feeling something means you are alive and capable of love.

Goals for 2016 there are no strings on me
1) Expand the knowledge of your craft. Take classes, learn, grow, get into dancing shape
2) Produce art
3) Eyes on the prize: January 2017 Gecko physical theatre masterclass, London.

Let's revisit this in one year from now, shall we? See how we did?

ps. and B, let me re-iterate that last resolution again in case you missed it: Love thyself, even the icky moments. Because feeling something means you are alive and capable of love.