Today I Threw Away a Shirt, and other stories

[Content Warning: suicide, depression, & the cursey words. Take good care, friends.]

Today I threw away a shirt.

Two days into my 29th year riding this globe, I threw away a shirt.

I’ll tell you why this is significant. It wasn’t just a shirt.

It was the shirt that I was wearing on a day back in February 2017 when I intentionally overdosed on prescription medications.

Most people do not know about this. Most were told I was hospitalized for a GvHD flare-up. Generic, fit the bill. It was really the first time I was not transparent about what was going on. 

I have not been able to write about it. I knew that in time, the impulse would come. This is part of my story. I am still living it, but I am afraid if I wait until I’m ready or wait until it’s over I may not be around to tell it. That’s the truth of it.

This past year has been record-breaking. I’ve never struggled so much in my life. I had already been through what I thought was hell. Turns out I was wrong.

There are much worse things than a life-threatening illness. There are much worse things than chemotherapy and Hickman lines drilled into your chest and javelin ass needles burrowing into the back of your hip. There are much worse things than wiping out a rogue immune system with a life-threatening treatment. And there are even worse things than eleven months strict quarantine from the whole world. 

I honestly didn’t think that a possibility.

But there are worse things. It’s called aftermath.

After all these things--and more but I honestly cannot list it all, and you don’t want to read that shit anyway. (includes literal shit, too. Like when you contract a weird meningitis-ish thing that Infectious Disease never figures out one month post-transplant, almost die in a negative pressure room, shit the bed and get hosed off in the corner hospital bathroom like a diseased factory animal waiting to be slaughtered. But I don't want to overwhelm you with TMI or anything... After all these things, one more thing after another after another after another: I kept thinking I had hit the bottom. Rock bottom, here you are. Okay. ...Oh wait--the floor broke through--falling falling falling--SLAM This. Is. Terror. No? The ground gives way again THIS is Terror right here. And...holy shit THIS IS TERROR!? The repeatUntil I can no longer make a stupid exclamation, just wordlessly paralyzed laying on the floor with every useless fiber wanting to just melt into the earth like I never happened.

And so it goes. Another depth I didn’t think possible. Over and over again. This is depression, I am (still) learning. I have dealt with depression for most of my life, but nothing before now has been anything like the past year. And I can’t put a date on it because everything's a blur. Dates, faces, names, to-do lists, memories, vocabulary, words at all… it’s a blur. Every day slips into the next one, vaguely linked together with bouts of sleepless, painful nightmarish hours of darkness between times when the sun is lighting up the part of the globe I happen to be sitting/laying on. For many people with depression, sleep is the escape. Bed is the safe place. For me, it is a battlefield. This disease caused by the stem cell transplant causes me to not sleep, and (so much) more. I wake up 3-15 times a night with excruciating muscle spasms. I’ve only just come to realize that they haven’t gotten easier. I’ve just...gotten stronger, or something. Or I’ve gotten used to the pain to the point that the intensity of the pain and how long it will last are commonplace enough just so that I don’t have full mental breakdowns in the middle of the night as often anymore. Often I lie awake surging with anxiety about trying to go to sleep that before I know ot's 4:30, 5, 6am, the birds are starting to sing and the sun is rising. It does not bring me joy, and that makes me even sadder, to know I am numb.

My personality has once again -and worse this time- taken a nose dive off a cliff into unknown sea depths and my pockets are full of stones. I feel broken, intrinsically. It’s hard to put to words, but if I don’t try now, I don’t know that I ever will. I’m terrified to post this, and I almost never feel that way about anything I write. Not like this.

Because I’ve been hailed a “warrior” Strong, brave. I’ve even crowned my body as the Greek Goddess in times passed. But she’s dead. Or hiding very, very well. Maybe that’s my glimmer of hope peeking out. Didn’t know I even had that, so there’s something.

And...She’s not dead, not all the time. There are moments when she is okay. I suppose if my bed was a refuge it could possibly be worse -which is hard to imagine- just because I’d be there all the time. But it’s not an escape. Sleeping is not an escape for me. It never has been I don’t have an escape. I feel isolated, alone, sad and broken everywhere I go. I feel I don’t belong anywhere. My myriad problems are so far reaching that no one knows wtf do do with me. I don’t fulfill anyone’s checklists, only parts of them; so I get passed off and passed over. This is true. I wish it wasn’t and it’s hard to write this. I am letting people I love down. And even worse, I am letting myself down.

I wanted so much to be the woman who fucking burst through cancer like Wonder Woman, came out the other side with gnarly scars but tales of wisdom and a flash of wit. But I’m just not.

I want to stop writing now, but I am going to keep going to see what I discover.

I wanted to be the superhero of my own story, but the actual truth is that my mother, Joy, is the superhero of my story. She is my best friend, the only person in this world who has seen everything, including hosing off my shitty butt for literally 29 years now. Thankfully that skill hasn’t been needed since I was 24, but still. She’d do it in a heartbeat if it meant helping me in some way. She is the most selfless person I have ever met, and will ever meet. Most days when I still want to disappear and cease to exist, she is the reason I can somehow crawl through.

So, if you’re still reading, you probably have some questions. Maybe not questions you would ever ask in person, because mental illness and suicide is so taboo that no one knows how to talk about it. I don’t either. I’m just trying to tell a bit of my story.

I was hospitalized with a very bad bout of pneumonia at the very end of last year that knocked me on my ass. It made every other pneumonia I’d had (which are numerous) feel like seasonal allergies. They told me it would be months of recovery. Every hospitalization comes at great mental cost. Less autonomy, less ability to function, less alive. January 1, 2017, I decided I was going to either shave my head or kill myself that day. It seems extremely unreasonable, even now, but it’s true. I shaved my head.

And I finally looked on the outside how I felt: like a terrifying ghost sent to haunt some girl’s life. I have a picture from that day. In it, I look like I am dying.

I remember thinking about it days afterward, regretting shaving my head and how, had I chosen the other option, there would be no space for regret. I found some solace in that. It didn’t last long, I guess. I started a partial program, but I hated it intensely so I stopped going.

Fast forward.

End of February finds me dully staring at a handful of pills saying aloud It’s so easy. It’s so easy. Apathy. I don’t remember too much after that.

I remember my mom bursting through the door I had sealed off. I remember vaguely the EMT dumping and counting pills on this desk that I am currently writing on. I have flashes of being brought down the stairs, them not being able to get an IV in the ambulance, the fluorescent lights of the ER, police officers everywhere, asking how many pills, passing in and out of consciousness- was I dreaming or awake? Is this what dying feels like? This is what dying feels like. This is what dying feels like. My mother holding my face, Not today, sweetie.

I am in ICU for several days, four I think. I won’t go into details here but it is horrifying and confusing. No other words grasp it, really.

When I am finally more stable, I move to a hospital floor under 24/7 supervision/1-to-1/babysitting. Some of these folks are much MUCH better at this job than others. I could talk about mental health treatment for days, but I won’t.

Then I go to my first psych ward. Transferred at 1am. This one doubles as a geriatric ward (??) and so my exposure to diarrhea is immediate. The next morning I discover that I have, in fact, slept in a bed with feces on it. I am told Oh honey I’ll clean that up for you. As if it was mine. I can't fathom what is happening to me.

I get out relatively early because I have an apparently common burst of vivaciousness after an unsuccessful attempt. I am glad to be alive.

Fast forward.

I go to a scheduled check-in with my psychiatrist and it ends with a very distressing admittance via ER to another psych ward. Cue Terror of a busy ER. People screaming, crying, bleeding; the sickening laughter of nurses amid the chaos and the squelch of wet shoes on dirty hospital floors. Apparently it is raining. When I’m finally transferred, again at 1 or 2am, I’m put in a padded room and only later find out that it doubles as their intake room and is not, actually, be where I will be staying. The first words I hear at 2am from a night-shift worker who looks like he’s in a shitty nu-metal band is, “What’s with all the transgender bullshit? You're one or the other, can't fucking pick.” This is a direct quote. He is talking to a coworker who agrees. For all they know, the emaciated depressed girl lying in the padded room three feet away is trans. Thankfully I am not a trans person in a psych ward to hear this but it cuts through me like ice. The world is cruel. I want to cry but I am too shocked at everything. This stay is long. Terrible. Dehumanizing. Weeks go by. My mind goes numb, buzzing like a flash-bang has permanently gone off.

Fast forward.

I’m out, but not about. I am trying to put together a play with my theatre company: the one place I feel safe.

I go to MGH to attempt to address another piece of the problem; the "cycle of doom" as I am calling it. Chicken or the egg: Depression-->Chronic Illness-->Not Sleeping-->Not Eating-->Muscle Atrophy-->No Autonomy-->Chronic Pain-->Anxiety-->Depression. It never ends. Maybe psych meds aren’t the answer...they haven’t been working for me. I think there are just too many other factors and just modifying brain chemicals isn’t working. GvHD and/or depression, who knows, all of the above, has my body weight dropping. I’m trying to stop the shriveling but it’s proving nearly impossible. I weigh in under 100lb. My fatigue level is astronomically high. I still can’t sleep. I have no appetite and swallowing is physically difficult as my throat and tongue muscles have inextricably atrophied like the rest of my body. Depression descends like a shrinking grimy dented metal cage from which I see the entire world.

I leave MGH floating on a slightly elevated hope, somehow. Everything is not terrible. High praise from me. 

Fast forward.

I cancel/postpone/whatever verb makes you feel better about yourself The Play; for several reasons but I realize that pushing myself to do this show even for the next two months will actually kill me. I had written the script. I had already scheduled auditions. I had put down a sizable deposit on the space (which I still haven’t received back), I had started a GoFundMe for the production. I pull the plug.

I fall further into the hole.

Every morning I wake up and I cry. I don’t know why, it’s all I have. Sleep is for recharging. But for me it is a nightly battle of my body and I always fucking lose. I try to sugar coat these experiences to make them more palatable for my loved ones. But I cannot shake this dark feeling that it’s just other people’s selfishness that keeps me from taking pills again.

But the truth is, I don’t want to die. I don’t. I don’t think I am worthless, intrinsically. I believe humans are important, worthy of love, worthy of forgiveness and compassion. I am one of them, on my best days. But this body I am trapped in is more than a shitty cage. It’s a shitty cage that talks. It can’t eat, sleep, climb stairs or lift anything over four pounds. I’m wasting away. I say over and over it’s like my body is slowly dying. That maybe I’ve done my part already, and I’m not supposed to be here anymore. I’ve cheated death several times now. I’m in pain all the time. I can’t do this anymore. I can’t do this anymore.

Then something lovely happens: a day at the MFA with my mom, a road trip with a friend, watching movies, a new art project. For few moments here and there, depression fades slightly. It gives false hope to both me and the people I love, because depression always comes back, rearing, and I’m always facing an empty bed like I’m going to war every night. I am more afraid than I have ever been.

I want to talk about this solely because I don’t think I’m alone. I feel alone. God, I feel alone. I feel so fucking alone. But we humans hide a lot. From others and from ourselves. I am trying to not hide. This is really hard to write; I’m still struggling. But perhaps there is still a glimmer of a human spirit in here, who can say. All we want is to not feel alone.

The heaviness of every day. The self-hatred when I can’t force myself to eat, when I can’t leave my house because Panic has taken over and I want to disappear. I want to be in a body that works, that doesn’t want to cease to exist. I want a brain that doesn’t wish so deeply that I had never been born, telling my mother this on my 29th birthday. Watching my mother cry. I want a life where I am free.

I want a life where my Terror turns to Beauty. I want to believe it’s still possible, but that hope is more faint than it has ever been. I can’t find the words. Having a failing body, mind included, is baggage no one wants to carry around. The burden of how much this world has gone to shit the last few months; I can’t even begin to talk about it. I cry for the world: how I am unable to change it, not even in a minor way. I watch people get hurt, hurt others: and I hurt with them, and I can’t take it any longer. I watch BBC baking shows because for those 45 minutes I am anywhere else but here.  

God is either Love or all powerful. God is not both. This is also terrifying.

A couple months back something traumatic happened and it ended up with me walking alone over two miles home, mostly through the Beverly cemetery. I'm not actually sure how I managed that. Two miles. I cried over dead people I didn’t even know. I fell down a hill and cried because it took me a really long time and a lot of effort and pain to crawl to the rock wall and get up because my muscles are so weak. I touched every headstone I could. I finally asked myself out loud Do you want to end up here, silent? Is this all you are good for now? The fact that I cried while I asked myself this told me No, it’s not what I want.

I need to at least tell this story before it’s too late. Depression is a life-threatening disease that no one talks about. It can kill at any time. Sometimes there are tons of warning signs and symptoms, sometimes none at all. But I need to stress that this is a disease. In one, frightening moment of clarity right now, I am able to see it as something separate from my true Self. Something I am unable to do most days. Most days it feels like it’s all I have left, it’s what’s driving this thing. Everything else about me has died and I’m doing a really shitty job at faking being alive.

But today I threw away a shirt.

It’s a(nother) start.

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