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

Day 465: 2014, an epilogue

"What doesn't kill you makes you stronger" - Kelly Clarkson/Nietzsche 
"hahaha" - Life

I was talking with a friend a few days ago; one of those precious friends that no matter how long it is between seeing each other, you pick right up again and dive into soul ponderings and somehow find that you are on the same page. We discovered that 2014, a year on its way out, had really been one of (if not exclusively) the toughest year on our personal records. She shared some hard things that I had missed because of my own life dealings the past two years. Though it had been a while since we had been able to really reconnect, and even though our stories are different, we share a common thread in many ways. We both had been shaken, hard—and honestly, broken. We both realized that in hard times before this there had always been a silver lining; or at least, hope—in spite of it all. But something happened.

Whether it was a explicit event, or a mudslide combination of many experiences, something deeply changed. The world went from being something that was fundamentally good where bad things sometimes happen—to being fundamentally bad where good things sometimes happen. My intuition had never been so wrong. I have never felt this way before. This shift was unwanted, unwarranted. It just happened, like part two of what happened to me late in college: after 20+ years of understanding the universe in one such way, I slowly realized that something had derailed in me: that some fundamental things didn’t make sense anymore. I’m going to pull an excerpt from a piece I wrote for a college publication a few years ago, as it describes very well how I felt then:

It’s like a tower of building blocks that we inherit as children; they form a foundation for our understanding of the world. They describe God, Jesus, this little light of mine. They are comforting, they make sense. And I have turned my gaze back to mine only to find they have sort of crumbled to indistinguishable rubble, and there’s some weird dirty animal making a mess of it.

...

There isn’t a specific moment when it happened, when I decided to be where I am now in terms of religion and faith; God or god or the Light or whatever she/he happens to be, if she/he happens to be. It happened over time, which you might think would hurt less—and maybe that’s true. It was a slow and sad realization; as doubts started creeping in, as I grew up, as people I love died. I started feeling uncomfortable sitting in church. I asked questions. I started reading existentialist philosophy (I know, it’s trite). I was trying to look at the world through different lenses than the ones I had inherited. It’s not like reading these things and thinking these thoughts suddenly made me cease to care about God. Quite the opposite. I suddenly found that I cared very much. I cared who this God was, and deeply questioned what I had been told and what I had believed; things were starting to not add up. It wasn’t a fanatical break. In fact, I tried to hold on, for so long. It was slipping away.”

The foundation upon which I had rested all questions, crises, problems and qualms—was crumbled, dismantled. But even then, I was hopeful: though I did not know where the hope was coming from, I believed in a higher love. I believed that the world would eventually right itself through my yearning. Beauty and Forgiveness and Love would be revealed as the first and the last. Even while inside my deepest soul darkness, in time I made my way out, in some manner. Deep down somewhere in my gut, I knew that there was something greater that I was seeking. My wonder and doubts were seeking a higher, or perhaps better described as a more central, essential—beauty and truth and Love. Even if I was unable to hold it within myself. But something changed this year.

With death having been so close and losing myself in so many ways, with family roles shifting through trauma, with abandonment close and far, with so many things that evade words... something happened. I had to leave the job I just started because my body is still too fragile. I watched my expectations for 2014 disintegrate over and over again before my eyes. I felt so much loss. After a long time of trying to just survive it all, I turned around to the foundation that I had been slowly trying to build again over the last four years, only to find that the dirty gremlin was back, breaking even the basic blocks apart, crushing them to dust. In philosophical terms, this is a major disruption of my metaphysics. In layman terms, this ruined my life, again, but worse this time. I didn’t think I could be this wrecked. I never thought anything would truly break me.

I lay in that for a while. It was all I could do. I felt the weakest I have ever felt—psychologically, emotionally, physically. The trifecta of complete powerlessness. I felt the lowest and darkest I have ever imagined. It is beyond words to describe. I felt so far away from everything I had ever believed about myself, who I was, what meaning was. My fabric was torn: not just along the seams, but the integrity of the fabric was dissolved. I lived in the darkness, and I didn’t know how to begin to move out of it. The darkness over there is the same darkness as here. I felt no strength in me to start crawling to re-build. There was no veil between me and thoughts of death. I didn’t move. And it lingered.

I had very hard nights: whether the pain from my body or from my mind, or both. Chemo and GvHD destroyed my tear ducts so I cried without tears. I wanted to die. Life often seemed no more important than death. My mother was there for me, through most of them. She held me. She persisted, longer than anyone else, more than anyone else. She told me: when you are in that place, just remember that I need you. If nothing else can keep you alive, I need you.

With no real direction, I did what I could: each thing a tiny, seemingly inconsequential step. I started moving, even if it was all in the dark—call it fate or destiny; I don’t know that I believe in these things. But things over the past months have come to pass in such a way that it makes me believe that true good things do happen. A few months ago, a close friend visited me and brought with her a zine and ideas of self-care. We talked a lot, and I read the zine for weeks after she left. It inspired me in many ways. The title of this little publication is “The Worth of Water” based upon the quote: “We never know the worth of water until the well runs dry.” This changed me, somehow. I know that I am very affected by what and who is around me, and so I deduced that I had to actively place good things and people around me, in hope that they will influence me for the positive and lead me on a journey back to Love. I tried very hard. Self-care became the lens in which I started to re-interpret the world; a little building block. The truth is that sometimes we run out of water. We just...run out. And that’s when we learn: water is vital. The natural next question is then: What is water? It turns out, water is the perfect motif: it is life-giving, cleansing, reflecting, revealing. It dissolves and moves through hard things, it flows over sharp edges and softens them, it efficiently moves through multiple states of matter in a never-ending natural cycle. Water is basically the shit.

Then another dear friend visited me, and he brought his own story of recent hardship; but he was able to share with me somewhat his pathway out of that darkness. I was very interested in hearing how he saw the world, and we talked about finding happiness—or at least, finding things that make you happy; things that make you believe in something greater and more beautiful than suffering and self-pity. We visited Walden Pond, which was a reminder (a gentle but firm slap in the face) that things endure beyond our bodies, and beyond our minds. The earth regenerates, trees grow, water reflects the sky. I’ll live on this planet for 80 some-odd years, if I’m lucky. Trees are older, and will outlast me. In a great absurdity, this water is simultaneously extremely old and also brand new. Here are the exact same molecules that lived in and nourished a fish 100 years ago, and yet they also just now condensed from a gaseous form and rained from the sky. There’s nothing like nature to remind you that you are a part of a system (divinely guided or not, I withhold conclusion). I can relax about all this heavy stuff for a moment. The calm of the place was comforting, the freshness of new oxygen leaving leaves mixed with the heaviness of being so deeply old. In that moment it didn’t matter if I had ultimate meaning for my tiny self; I was a presence in the world; alive to breathe that oxygen, and to then add moisture back into to the air from my lungs. And we just walked plainly through the woods, commenting on the tree moss and the colors in the water. I feel that I am learning to truly understand what it means to live deliberately, like Thoreau writes: “to live deep and suck out all the marrow of life, to live so sturdily and Spartan-like as to put to rout all that was not life, to cut a broad swath and shave close, to drive life into a corner, and reduce it to its lowest terms.”

In the weeks following up until now, I have found that self-care is many things: choosing joy being one. But sometimes you can’t even do that. So I started even simpler: making tea, watching You’ve Got Mail, sleeping when and how long I needed to, reading easy books, trying to eat healthy food to fuel my body. Talking about my thoughts to someone. Calling a friend, making cookies, re-discovering poems and listening to music that used to make me believe in something beautiful. Simple and stupid things. I thought: if there is nothing else I can rest upon, I have to start with these small visceral tasks. I am learning how to breathe; which is probably the most corny thing I've ever written and not immediately deleted. But I'm serious. Stop. Take a deep breath, right now. You feel different. It manually relaxes your muscles. When you don't know what to do about anything else, baseline stuff will have to do. I keep catching myself these days, realizing that I've been breathing shallowly, teaspoon by teaspoon of air. And I say to myself: Take a deep breath, right now.

And then another person came into my life. He has challenged me to root out my true motivations, my true thoughts and feelings, my basic desires for life, and then to communicate and follow that as honestly as possible. It has transformed me again. I see myself in a movement forward.

The things I find to be true in this life are mostly absurd. I can’t explain to you exactly why the story of a rebellious Jesus still brings me to tears. Or why Pedro the Lion’s Be Thou My Vision stirs in my stomach. Or how water is both new and old. I can’t explain why the radical notion of Love in all instances resonates true for me. I don’t even know if I could actually stand and act by that notion. Truly horrible things happen, and people choose to do bad things. I don’t know. I have to believe that every human has the capacity for both good and bad; and each has the capacity for Love. Maybe some people give it away. And I don’t know what to do in that instance. I do know that Love looks different in each circumstance, and know I do not understand them all. And yet it is persists in me, it is what I feel to be true. The unattainable goal: altruistic Love. Absurdity. Human beings are appendages of an earthly cycle, and are each intrinsically surprising and unique. Paradox.

“Remember that there is meaning beyond absurdity...” A.J. Heschel

Love is like water, I think. So I must learn to be like water: gentle when it needs to be gentle, and a surging flood when it needs to be a surging flood. Be life-giving, nourishing—lift up the heads of people flowers and strengthen people leaves. Clarify, reflect and reveal true things. Dissolve hardened hearts, smooth over sharp bitterness. Sinuously adapt to every situation: be solid when it is cold, liquid when it is warm, and gas when it is hot, and everything in between; don’t worry about change. Water never fears to run out of itself, it is not self-conscious, it has no thought to conserve its energy for some later time when it feels safe. It does not dam itself; it only breaks barriers. It’s absurd that water falling on a mountain makes its way like little fingers through the rock and sand all the way to the water table below the earth. And that is what I want to believe about Love. It is not without effort, rather it is full of pure energy that vibrates back to the beginning of time. It finds the sacred in the mundane. It takes the knowledge of everything that’s happened, and continues in the same resurrection cycle. It is not afraid to expend the energy needed to get where it wants to go. I want to believe in this kind of world again; where there is enough Love; that I don’t need to hold any inside myself for safe-keeping. Give it away, the cup runs over. I hope for even when the lights are out and I can’t see it, that it is there anyway. And when you can’t see anything at all, start small. Take a deep breath, right now.

2015, I have hopes for you. I have dreams, smiles, tears, whispers, laughs and screams for you. I think we will change each other. I will take what you have to give. And I will give you my all.

  

"What a marvelous cooperative arrangement - plants and animals inhaling each other's exhalations, a kind of planet-wide mutual mouth-to-stoma resuscitation, the entire elegant cycle powered by a star 150 million kilometers away."

Carl Sagan

“Being human is a surprise, not a forgone conclusion. ... One thing that sets man apart from animals is a boundless, unpredictable capacity for the development of an inner universe. ... Indeed, the enigma of human being is not in what he is but in what he is able to be.”

A.J. Heschel

“the potato said from underground: ‘you’ve got it all turned upside down!’”

mewithoutYou

let everything happen to you: beauty and terror.

Just keep going. No feeling is final.

Rilke