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.

"story of a scar"

I've recently joined an online writing group that meets weekly through Lacuna Loft. It's been really lovely so far- we are spread across the country, but join together for two hours every week on a video chat and write and share our work out loud. It's made me very aware that I should be more diligent in my writing, because I've been really inspired by our meetings together (of which there's only been two! So much fun already.) and it makes me want to spend more time every day just writing down my sputtering thoughts.

Here's a little clip. This is from a 12-ish minute writing block with the prompt: "story of a scar". The thing I value the most about our group so far is that we have a no-apology rule. You are not allowed to apologize for your writing. We know you wrote it five minutes ago; it's rough, messy, perhaps non-coherent. But it doesn't need any explanation. I love that. That's where inspiration comes alive. 

-------

hello my name is sort-of-Frankenstein. Well, if I’m completely honest with the pretentious English major part of me, I’d really be “Sort-of-Frankenstein’s-Monster”. But yeah, I have weird holes all over the place, and not just the ones you’re born with. I have new ones, drilled into me, deep and deep and things pulled out of me through a medical sippy cup straw. I have holes poked under the thin skin of my wrist and inner elbow, dark mark echoes of stabs from being fished like a salmon in a stream: wildly pushing against the current and pulling away from the hurt.

I have holes in my chest, two the size of bullets straight to my heart. I have knicks in my collar bone to remind me of that fishing wire. There’s plenty to look at, there’s plenty to answer a four-year-old’s question of “what is that” and “is your body better now?”

I don’t know. Because there’s more holes than just those. There’s holes everywhere. Every time I look in the mirror and see the dark circles of my eye sockets, the jutting bones of my cheeks and hollow shoulders. The enemy is defeated, I guess. But what’s left now is a mostly empty monks bowl of a girl, waiting for the generosity of some Samaritan to empty their pocket lint into me. I’m “Sort-of-Frankenstein’s-Monster”, a girl: blood’s enemy and life's eternal question. Are you alive? But how pretentious. Who are you to question what happens?

There are more holes than what you see. It’s been years of building and building, watching it crumble; building and building, watching it crumble. The enemy is defeated, I guess.

I feel like a crevice, a place between other places. Maybe water flows through me in the wet season if we’re lucky, but always slowly dries out like chalk in the next. I’m waiting for that current- either electric fire from my maker bringing me to life, or the water surge- where like a salmon, I’ll leap free into the air.

-b

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