Also,

I feel I must tell another, simultaneously occurring part of the story from my last post. I left this section out of the last post because 1) it’s a lot to take in (length-wise and subject-wise) and 2) I think it deserves it’s own platform. This one's is a bit longer than my normal posts, but I do hope that people are still interested enough to read it. I tried to make it readable. If not, don't worry. I won't know.

I am cursed—for lack of a better word, I don’t know, it’s often a burden—with candor, so here goes.

During intake in the ER, they always ask you a series of questions, including: Have you experienced any suicidal thoughts in the past three weeks? Again, cursed with honesty, I answered yes. Because I had, it was the truth. The recent chronic pain and isolation had put me into a place where I questioned the purpose of my survival; what is this life, what kind of existence is it to just be riddled with agony as I watch my life and dreams crumble around me again and again, each day slipping away from me as I lose control over everything, including my body. I had no choices, just pain. So I said yes.

Little did I know that this started a silent chain-reaction of systematic red tape to cover a hospital’s ass. It wasn’t until later that I realized why the police officers were just *seemingly randomly* positioned a mere 10 feet from us (my mom and me) while I lay in a bed in the ER hallway. Why there was a nurse lingering by the end of my bed as the nurse who put in my IV F’d the first try which resulted in the one of the most disgusting things that has ever happened to me, I won’t elaborate. He totally botched it, and was ripping and throwing things around, carelessly wiggling the needle in my arm, not looking at me or acknowledging at all that I was (visibly) very upset about it.

Hours later another nurse came over to tell us he finally “had a room” for me, and we were lead down a hall. Into the psych ward we go, which smelled of urine, and were shut in a stripped-down and, in effect, padded room with literally just a bare bed and a tiny TV in the wall behind a plexi-glass window, and I presume hidden cameras. Both of our phones were dying but we couldn’t charge them because there were no outlets in the room: so occupants couldn’t electrocute themselves. Outside the door with a tiny window was one of the policemen; eyeing me and the hallway with such boredom I can’t even properly describe it. It was as if as soon as I was flagged as a possible suicide candidate (idk wtf to call it. Suicide candidate? idk wtf.) I was criminalized.

And it continues. The psych ward booth guy asked if I wanted the TV on. I didn’t care but the room was so desolate and sad I said yes just to have some company. It was 3am by this time, so what else is on the TV but a paid commercial for some ministry for starving children. If it wasn’t straight up dark comedy enough yet, we watched as the camera pans over said starving children, and then cuts to one in particular as the voice-over states, and I QUOTE: “The pain in Angela’s eyes is evident. The trauma she has endured lingers, she is starving, her father COMMITTED SUICIDE one year ago.” (um, emphasis added, she did not scream this.) My mom and I just looked at each other and could barely eek out a weak laugh in the middle of a treacherous night. If this isn’t black comedy meat for my one-woman show, I don’t know what is.

If I had actually been in serious danger of committing suicide, everything I had experienced so far would all but complete the heartbreaking deed. The distinct shift in how I was treated the moment I answered that question, the sterile yet dirty room, the policeman sternly lurking, and now the TV TELLING ME ABOUT A STARVING CHILD WHOSE FATHER KILLED HIMSELF. Can this be real? My mother asked the man to turn off the TV. So we sat in silence in Barren Urine Room for a while until I told my mom to go home and try to sleep.

Around 6:30am or so I was finally moved upstairs to the main hospital, but I was so out of it and exhausted to notice (yet) that I was put on what’s called “one on one”, which is I guess a kinder way of saying “suicide watch”. This means there is someone in my room at all times: I had to pee with the door open lest I find some way of killing myself in the tiny hospital bathroom. And this wasn’t told to me, I had to figure it out on my own. A CA sat down in the chair beside me in the morning, and at first, I was confused. I asked her if she was waiting for someone. She just said “No, just hanging out. For the day.” I then proceeded to talk to her a bit about my situation and mental state (OMG MISTAKE) until at last I silently and sickeningly realized why she was there. She was my babysitter. When Babysitter #1’s time came for a break/switch off/IDK, Babysitter #2 came into the room and talked to Babysitter #1 about me in the third person RIGHT IN FRONT OF ME, and proceeded to then sit in the chair one foot from me and text on her phone. She did not ONCE look at me, introduce herself, or talk to me at all for almost two hours. Criminalized. I’m pretty sure this is the exact opposite way to treat someone who may possibly be in danger of killing themselves.

Then Babysitter #1 came back, and I went into a pretty bad leg spasm. My nurse happened to turn up in the middle of it (none of the nurses were ever there when I had spasms in the hospital, this was the only time. Again, no one but my family and a few friends have ever seen what they are like which just continues this inability to convey how bad they actually are) and I was trying to communicate that I hadn’t had any magnesium that day yet, which I need to take 4 times a day. The nurse replied curtly, “Well, you never said that.” And I tried to say (again: while in INSANE PAIN it’s hard to talk at all, let alone have coherent thoughts and communicate them with any clarity) that I was told they didn’t need to know my supplements while I was in intake in the ER, and that when THIS EXACT NURSE went through all my meds, dosages and times with me again when I finally made it upstairs to the proper hospital, the computer kept freezing so we just skipped it to “come back to it later”—which never happened. I wasn’t really able to get this all out (re: PAIN) and the nurse shot back at me “Don’t you give me that attitude. You never said anything about magnesium.” 

This upset me a lot. I DO NOT give attitude to nurses. I make great efforts to be extremely courteous and I hate asking them for anything even though I know it’s their job to do things for me. I have a fear of being That Patient who is talked about amongst the staff: who’s needy or rude etc. etc. Because I know they do it. I panted, “I’m not trying to give you attitude, I just—” she cut me off “Yes you are, you’re telling me I’m not doing my job! You’re giving me attitude!” and (with me still in agonizing leg cramp world) she stormed off. Again, I am not exaggerating. And Babysitter #1 sat quietly throughout this entire exchange, on her iPhone.

After the nurse left, I was sobbing. My leg cramp had subsided but I felt crushed and misunderstood on so many levels. This nurse had completely misjudged me, been cruel to me, and on top of it all—I’m on EFFING SUICIDE WATCH you’d think she’d be a bit more understanding or maybe care AT ALL. I’m kind of crying as I write this, it was so horrific for my psyche. I sobbed for a really long time, crying aloud how I’m not someone who gives attitude, I try so hard to be respectful and thankful for everything my nurses have ever done for me. I’ve spent months in the hospital, I’ve had dozens of nurses. I hate asking them for things, I don’t want to be a troublesome patient. etc. etc. My hospital bed was shaking violently with my heaving, tearless sobs. I was texting my mom to come as soon as she could, because I was alone in this room with a fucking silent as my apparent soon to be grave one-on-one who never said a word.

After my mother arrived and I sobbed into her sweater for a while, Babysitter #3 switched in. She talked to me/my mother a little bit. My mom said something to the effect of “this must be a really boring job to have to do this” referring to the one-on-one. She replied, “Actually, we’re usually rushing around and stuff, so it’s kind of nice to just sit here” I let the meaning of that wash over me. Kind of nice. Kind of nice to just have to sit doing nothing with someone who wants to die. Thank god someone’s on suicide watch so you can have an easy day on the job. NBD. Just another work day, but thank god I don’t have to do SHIT except watch this stupid girl shit with the door open.

The psychiatrist finally made it to my room so I could be “evaluated.” I didn’t mind her too much, my mom was in the room and I said it was fine for her to stay. The psychiatrist seemed surprised. But I am very open with my mother so I didn’t see why she had to leave. Also I felt better with her there, someone who actually knows who I am, after everything I had endured already. Somehow I seemed to convince her that I wasn’t in present danger of killing myself, and the godforsaken “one on one” was lifted. Thank god I can pee alone now and maybe feel a little bit more human. A bit.

Another day and night goes by, and I am supposed to be going home. But the doctor looked at my newest X-Ray and white count and was not convinced that I was healthy enough to leave. I have to stay another night. I miss the class I am supposed to teach. I cancel more plans with friends. I am stuck in a white box.

When I am cleared finally the next morning to go home, I’m told I need to be “evaluated” again by the psychiatrist in order to be released. I’m told this will take a long time because there are a lot of people she has to see before me. So I wait. I read and walk the loop of the floor. I am feeling okay, but I want to shower. I ask to shower, because I need towels and also help to cover up my (now third) IV so it doesn’t get wet. The nurse says she’ll be right back. So I wait. Time goes by. Nothing. Again, I am afraid of being That Patient, especially for something like showering, when perhaps my nurse was occupied with something actually threatening. I don’t know. Two hours go by. I don’t know why I don’t say anything or call for the nurse, but I don’t. I make cup after cup of herbal tea, pee, read my book, pee and pee, but I’m getting frustrated and irritable—understandably so, I should think. I just want to go home.

Finally the psychiatrist comes into my room, where I am still waiting to shower (it had been several days since my last shower, I’m not feeling Great at the moment). I don’t remember the exact discourse that followed, but I tell this lady that I’m not suicidal, not really. She says, “Well, you said you didn’t want to live—” I tried to explain to her the way I see things: the difference—perhaps subtle—but the difference between wanting to kill yourself and wondering why you survived and maybe wishing you were dead in the height of extreme pain. I tried to explain that recent circumstances have pushed me to a point of not wanting to do this anymore, but that I’m not making any ‘plans’ to off myself. And I see those as two different things. She did not. We were passing ships in the night.

She asked if I had ever felt this low before, and I said yes. She asked when. I said, about this time, the past two years. She asked if I had heard of seasonal depression. I said yes I know that plays a part in this. But that I also spent an entire year in quarantine isolation after my transplant, seeing only the inside of my apartment, car, and the hospital. She said “Hm. That must have been difficult.” UM YES IT WAS BLOODY DIFFICULT YOU ASS. I’m so tired of people saying that. I understand it’s probably most people’s reaction to hearing even just that tidbit of my messed up life of the past two years, but seriously? It’s your job to handle this kind of thing. Not make me feel like a project gone wrong.

She asked how I had gotten out from under the depression in the past, and that brought me back to a year ago, about this time, when my disposition towards the world was pretty dark. I knew it, but I didn’t know how to fix it. I used to view the world as an inherently beautiful and magnificent place where bad things sometimes happen. But there was a gestalt switch in my metaphysics: the world was now a dark place where good things sometimes happen. It felt like all the good things were feeble attempts, like tiny matches that we lit. I didn’t see these ‘matches’ as an unworthy cause, but ultimately pointless because eventually they burnt out and plunged us back into darkness. I had a few moments of insight at the time, brought on by a few occurrences and conversations with people (which I wrote about, I believe in December-ish of last year), and I realized I needed to take control back from the darkness. I had once believed the world a beautiful place. How can I get back there? I must be able to. What had changed about the world? It was me who changed. I didn’t want to be depressed any more.

I realized that I was (and am) impressionable, like a sponge. I (finally, at 26.) realized that my surroundings have a great impact on me, and sometimes for the negative (i.e. watching The Walking Dead a lot and alone, and its picture of the human race is pretty dark...), so why wouldn’t it work the other way around? So I took action. I read poets and listened to music that had once inspired me to see the world beautiful; poets whom I trust deeply and weep over. I surrounded myself with life-affirming things, made plans with friends, made lists of things that made me feel strong, courageous, an agent in my own life.

All of this was rushing through my head when she asked how I had gotten out before. After a pause of thinking all of these things, I started to try to explain what was going through my head, tried to say I read poetry, but my voice was broken up. I started to cry—not out of sadness, but because Rilke’s words flooded in: “let everything happen to you: beauty and terror. Just keep going. No feeling is final.” And once again, the floodwaters clean you right out. At first she didn’t understand what I had said about poetry- as in, she literally didn’t understand. “You do what? Read?” She then misunderstood my emotion.

She proceeded to rattle off all of the things that I could possibly be depressed about—“watching all your hopes and dreams for your life collapse—“etc. etc. I assume an attempt to place herself in the “But see, I get it” perspective. But honestly, listing off all the things that are shitty about my life was not really helping. I was still crying over Rilke and now also about my sad half-life she had so generously taken inventory of for me. And I started to get upset and scared because she has the power to forcibly hospitalize me for this if I didn’t answer correctly or say the right thing right now.

She stood up and moved towards the door. I was looking out the window at the sun and the sky and the birds—just the day before, my parents and I had seen a starling murmuration right outside my window. Mary Oliver’s “Starlings in Winter” floats to my mind. That, and fear.

“Well, I was feeling better about this at the beginning of our conversation, but now I’m not so sure. You’re not engaging; you’re not looking me in the eyes.” Well now I couldn’t look her in the eyes; my blood was starting to boil. A curious experience: to cry over beauty and fear and rising anger all at the same time. And then she made a statement that I can only describe as a riddle; whether it was to purposely trip me up or not, it was confusing as hell. Something to the effect of: “Am I incorrect to understand that you are making a commitment to preserving your life?” Now that I’ve typed it out it doesn’t seem nearly as confusing as it was sitting in that hospital bed. But my eyes were burning and my head was pulsing with Blood and Mary Oliver, and I looked at her and asked her to repeat the statement. Remember, she held the power to forcibly hospitalize me. I needed to answer firmly and correctly—the only problem being, I couldn’t tell if I was supposed to say yes or no. I’m sure my asking her to repeat it (to which she did, but in an even more back-ass-wards way, NOT the same statement as above) didn’t help my case either. I stared at her blankly for a moment while I tried to logically break down her brainteaser to deduce what I was supposed to say so I could go home. I decided upon Yes. (Note: Yes was the “correct answer” to her second, amended but still puzzling statement. I was making a commitment to preserve my life.) But I believe she took my needing a repeat along with the blank stare as my brain picked apart her daily double as a signal that I was lying.

Standing at the doorway she declared, “I know my job, and I know it well. But even I’ve been fooled before. I’ve been tricked before.” Now I really was starting to see red. And again, I was completely, utterly misunderstood.

On some levels, I get it. I get it. No one wants anyone to kill themselves. This woman most definitely has seen cases where she released someone under their own false pretense, and seen it go bad. I get that. I don’t envy her job for that exact reason. It must be very difficult to discern based off of one or two short conversations. But this woman doesn’t know me at all. Of course she doesn’t know that I am cursed with honesty. That I am at the mercy of strong emotions and can rarely hide them. She doesn’t know how much I’ve fought for my life already, but that sometimes you just get tired of fighting. She doesn’t know how much I have changed in the past few years, how I’ve grown quieter and more at ease being alone: something I would have never equated with myself at 24. She doesn’t know how Rilke, Rumi, Mary Oliver, Anne Sexton, Steinbeck, music, my mother, family, friends, even strangers have saved my life again and again. She doesn’t know. How could she? She misinterpreted what she saw based upon what she had seen before. I understand how this could happen, but it didn’t make it any easier in the moment. I was instantly hot with panic that I was going to be hospitalized against my will and confined to Barren Urine Room and the like for who knows how long. And if I am disbelieved and discredited now, what will change in the future?

“I’m going to go have a talk with your mother on the phone,” she said, my jaw clenched and eyes glued to the window, burning with beauty and terror. She left. As sunbeams crossed my bed sheets I sent a silent prayer out into November, who was resting unbiased outside my soundproof glass porthole.

After about 20 minutes of tearful limbo, my CA finally told me I was “ok”: cleared to go home. Thankfully the psychiatrist had listened to my mother, even if she didn’t fully believe either of us. She told my mom that she was concerned from one mother to another. I do appreciate that glimmer of humanity thrown into this chaotic mess. After my mother arrived to take me home, and as we waited for the rest of the paperwork to be finished (a million years), I saw the psychiatrist hurry along the opposite wall past my open door without glancing in, her heels clicking down the hall to her next evaluation.

I don’t write this to condemn anyone. I’m just telling my story. Mental Health is a serious thing. I will be the first to confirm that unambiguous, nonenigmatical statement. I had no idea that my one word answer to a question asked me in the ER would end up setting off the most distressing part of that week in the hospital. Not the pneumonia, not the spasms. How my mental health was analyzed, regarded, dealt with. The change in how I was treated as soon as I was flagged. I felt disrespected, other-ed, criminalized and belittled. I’m not impressed. But I hope to shed light on one story of many. I understand that it is immensely difficult to systemically approach mental health while taking into consideration and properly weighing the many facets and nuanced factors that contribute to a person’s mental state. But I would have hoped to see easily achieved basic humanity as part of the protocol. I don’t pretend that this is the worst-case scenario; in fact I don’t believe it to be even close. I also don’t pretend to be ignorant that other hospitals, nurses, doctors, psychiatrists and other medical personnel actually do a great job at handling these kinds of delicate situations of many moving parts. This is just my story. Afflicted or otherwise with honesty, I tell my tale.

Starlings in Winter by Mary Oliver

Chunky and noisy,
but with stars in their black feathers,
they spring from the telephone wire
and instantly

they are acrobats
in the freezing wind.
And now, in the theater of air,
they swing over buildings,

dipping and rising;
they float like one stippled star
that opens,
becomes for a moment fragmented,

then closes again;
and you watch
and you try
but you simply can't imagine

how they do it
with no articulated instruction, no pause,
only the silent confirmation
that they are this notable thing,

this wheel of many parts, that can rise and spin
over and over again,
full of gorgeous life.

Ah, world, what lessons you prepare for us,
even in the leafless winter,
even in the ashy city.
I am thinking now
of grief, and of getting past it;

I feel my boots
trying to leave the ground,
I feel my heart
pumping hard. I want

to think again of dangerous and noble things.
I want to be light and frolicsome.
I want to be improbable beautiful and afraid of nothing,
as though I had wings.

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.

--------
here's a poorly executed collage of small things

 

--------

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:

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

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