world of hurting things

I'm sitting slightly chilled in my parent's kitchen, watching sparrows bombard the two bird feeders outside the window in groups of twenty. It's raining and the sky is set in a timeless grey. I am listening to Sufjan's Carrie and Lowell over and over, and resting in a strange cold sweat and introspective mood. My left fingertips are telling me I've started to pick up my guitar a bit again, after a long long rest. I'm certainly not hydrated enough, as it seems I never can be. I was late taking my meds today and I'm paying for it, see the strange cold sweat mentioned above.

I'm contemplating life; a common pastime for me, though not always enjoyable as the definition of pastime suggests. And for the record, "contemplating life" is so stupidly generic and I already hate myself for not having better words. But the honest truth is I am sort of in a distant land right now. Maybe it's Sufjan. Maybe it's the rain and dark haze outside, maybe my constant state of being a little bit cold. But it definitely has to do with news from last night. A friend (we've never met in person, though we have mutual friends. We've been quietly following each others' blogs for over a year at least) and fellow BMT recipient has relapsed and this time the cancer is becoming resistant to treatment. A few months ago, he and their family were planning for a second transplant from an unrelated donor (his first donor was from his brother). But a transplant is only possible if chemo can do a lot of the work first. Chemo/radiation has to put the body into remission before a transplant is possible. Remission doesn't mean it won't return- especially with a blood cancer where your body has itself fundamentally mutated and actually produces cancer cells instead of healthy ones. Chemo has to work.

Their family (He, his wife and their two young daughters) had to face the decision of whether or not to proceed with treatment. Two days ago, on Thanksgiving, he started a final round of chemo, with hopes of a miracle. With people interceding all over the globe for this man, I am struck still with terror. It puts my own struggles into a tiny box as I contemplate the Terror their family is living through. And they keep going, somehow. Is it bravery, strength, necessity? This is a quote from his blog from Thursday, which is written mostly by his wife:

"We were given the choice yesterday whether or not to continue treatment. We've decided to go one more round. Ian checked back into UCSF and began a new regimen of chemo last night. If this puts him into remission, then a transplant is still possible. Otherwise, apart from a miracle, he will be left to survive on blood transfusions until he is no longer able to survive."

And so Terror descends. Why life seems to continuously and faithfully fall into one of these two categories: beauty and terror, I do not know. I do not know how Rilke could capture something so truthfully and with such simplicity. We all search for these little quips to live by: beautiful little sayings and quotes from great people that have the power change our perspective with a few simple words. And though I do not read German, I imagine that the lines from my life's mantra in their original language would be even more moving. But terror is terror. And I've had my share of it. But I place myself inside the imaginings of where their family now resides and I am lost. I do not know how to keep going. I have few words, just feeling that escapes illustration. I am afraid. Selfishly so, I must admit. This is the greatest fear of any person who's life has been altered by illness. The return. The unknowable and arbitrary non-reasoning behind it all. The switching of the lens, once again, through which you see the whole world. I want to pray, but I hardly know how to anymore. I whisper Help. But I don't know that anyone is listening, or if there is someone listening- if there is any power to stop chaotic and irrational happenings. Or why would this Someone choose me or you or him to save. To step in, here, now. When millions of people die every day. When people kill each other. When people kill each other and die because of arbitrary things. When we are all going to die someday anyway.

I'm trying to not sink into despair. And I'm not trying to belittle prayer or faith. I wish I had both. I whisper Help. If anything, I do not believe in closing doors. I don't mean to push or leave anyone in despair. I don't mean to condemn anyone with these words. I am attempting feeble honesty in such sorrow and fear. I try not to close doors. And prayer is an open, confusing door. In my mind I envision a ball of light, my arms holding out and being warmed and comforted and surrounded. But it is so difficult to hold that picture. It is difficult to believe in miracles. It is so difficult to try.

Shall we look at the moon, my little loon
Why do you cry?
Make the most of your life, while it is rife
While it is light
Well you do enough talk, my little hawk
Why do you cry?
Tell me what did you learn from the Tillamook burn?
Or the Fourth of July?
We're all gonna die.

-----

Should I tear my eyes out now?
Everything I see returns to you somehow
Should I tear my heart out now?
Everything I feel returns to you somehow
I want to save you from your sorrow

The only reason why I continue at all
Faith in reason, I wasted my life playing dumb
Signs and wonders: sea lion caves in the dark
Blind faith, God’s grace, nothing else left to impart

Do I care if I survive this, bury the dead where they’re found
In a veil of great surprises; hold to my head till I drown
Should I tear my eyes out now, before I see too much?
Should I tear my arms out now, I wanna feel your touch

Should I tear my eyes out now?
Everything I see returns to you somehow
Should I tear my heart out now?
Everything I feel returns to you somehow

-------

This album is a haunting gaze into grief. Every single song is a mysterious piece of humanity. Perhaps after enough repetitions it may finally have a cathartic affect, but right now I am just sitting inside its elegiac womb. I find myself having to lean on other people's words so much more than my own in times like this. It is my only prayer, for Ian, for myself, for this world of hurting things.

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 I've stopped counting: Updates and Winterizing my life

"Hello from the Outsiiiiiiiide. I'm freezing over; soon you'll cryyyyyyyyy" -November. 

(November is such a plagiarizing cheat, Adele, I'm sorry.)

Actually, we’ve experienced record warmth this year ("70s? IN NOVEMBER?" I rejoice). But I know its only a matter of time before snow arrives (this part's not so bad: it's beautiful and exciting and surfaces those nostalgic memories of every first-snow you can recall), the dagger-like wind picks up (and due to the fact that I am a paper-doll at the current moment, I fully expect to be whisked away to some distant land in the clouds never to be seen again. I'll write to let you know what it's like to fly, if I can find a pen and a reliable carrier pigeon), and the dropping temperature will chill both my physical and mental state into an angry Dark Ages. I hate the winter.

I remember being young and exhilarated by the prospect of this time of year: waking every morning with the glittering hope of a snow day, watching the school-cancellations scroll across the TV; building underground tunnels and igloos in the mountainous snow banks left by the plows; taking turns playing Snow Queen with my sisters--and when our cheeks couldn't take it anymore: hot chocolate and marshmallows awaiting us inside. It also meant that the holidays were approaching, obviously. Thanksgiving and Christmas: highlighted with melt-in-your-mouth sugar cookies, little red candles spinning the (German? Swedish?) nativity pyramid on the kitchen table, and the smell of evergreen wreaths when you walk through a doorway. Actually now that I've written all of that, it doesn't seem half as bad. Nostalgia is a very powerful thing.

But as you get older and there's no school days to be cancelled, snow means shoveling, scraping ice off your car with numb-ass hands because you can't find your gloves, sitting bitter and freezing as you wait for the engine to warm up, and for me: being perpetually late everywhere because I always forget to factor in how much longer it takes to leave (bundling up the layers, and readying the car, see above). I've also learned something about myself in recent years: I hate being cold. Not just that it's uncomfortable, but I actually get angry. Like really, really angry when I am cold. It's as if my brain shuts down in extreme efforts to focus on staving off hypothermia, and everything and everyone is a noxious distraction from my every cell trying to zip up its tiny winter jacket that the wind seems to blow right through. Not to mention the time-change and ever-shrinking hours of daylight. As soon as I'm cold, I turn into an ogre-ous (this is now a word. You’re welcome, English) form of Bekah. It's terrible, and I hate this version of myself. 

And on top of all this (the impending Doom), I’ve also had some not-great (read: the worst.) life things in recent weeks. I’ve written before about my muscle spasms. Well, they’re reaching an all-time high/low, whichever/whatever. The New Deal: about a month ago, my spasms went (quite suddenly) from a more intermittent irritation (though still excruciatingly painful when they’d happen) to a full-blown life-takeover. Every single day was a time bomb, counting down a spasm clock with the launch procedure completely unknown to me. All I knew that was at some point every day a part of my body will give up the ghost and submit me to torturous agony, often setting off a chain reaction as other parts of my body join in on this...escapade of debauched fate. (I am not exaggerating. I have a high pain-tolerance and I try very hard not to embellish my experience of pain. I have always been this way. This is the same person who unknowingly tore her (first) ACL and couldn’t properly walk for 3 weeks and then couldn’t squat, kneel or go up stairs without pain for over 8 months, but thought she’d just ‘power-through’, and then ignored red-flags of a serious medical condition, aka Cancer, for almost a year after that...dumb. So. Not an embellisher.)

And then every night, frequently hourly: spasms jolting me awake and I try to untangle myself from a blanket mess/straight-jacket to launch out of bed to try to quell the pain that I can only describe as my muscles attempting to break my leg bones. Literally every hour. Clockwork, I tell you. This extreme change in the frequency and intensity of the spasms scared me, and I spiraled real fast into a very dark depression. My life was being taken over by an evil dictator who lashed out erratically, but with enough regularity that I had to cancel, reschedule or amend all plans and appointments for weeks- which in turn caused isolation, which heightened my depression. And in addition, I had recently started taking prednisone again in a seemingly last-ditch effort to regain control of this body spinning off the road. Prednisone is a steroid/archenemy/med that doctors throw around like candy. Sure, it can help a lot of things in a lot of cases, but the side-effects both short and long term can be very bad. Very very bad. Read: bone necrosis, for one. Steroids also F with your brain and intensify any emotion you experience. Read: Depression. So, yeah. Spinning wheel of Death, Brain-side.

I was maxed out. I was maxed out on the pain, and maxed out on dealing with it. Every time felt like the last time I could handle it, I just couldn’t do it anymore. I didn’t want to do it any more. Most of my days were spent wishing I could just be knocked out or put under so I wouldn’t feel it. When I wasn’t just straight up crying (or screaming. I hate to admit this, but I sometimes scream into my pillows so I don’t wake neighbors. These muscles are not messing around. At all.) I’d just be asking god or my body or whoever could be listening: Why? WHY? and then No no no no no no. Your brain can do some pretty weird stuff when you’re in pain. I compulsively talk to myself because, psychology. “You’re okay, you’re okay, you’re ok, it’s okay. It’s okay its okay you’re okay” I call myself sweetheart, honey, my love, darling. And then sometimes it’s the opposite; I curse out this god-forsaken body with a string of uncreative obscenities.

And my never-ending question is How HOW can non-existent muscles cause this much suffering? There’s nothing even there to see (ie. paper doll), let alone spasm to the point of my bones feeling like their going to break. It feels like my body is trying to kill me, again. Cancer didn’t seem to work, so here’s the next attempt. Or perhaps my muscles are in mutiny and seeking to prove that they still exist in spite of me. I don’t know.

Well, finally after about three weeks of these shockingly quick-changing unforgiving circumstances and my mental state spinning out: I had one night of spasms so horrific, lasting so long and attacking new and larger muscle groups that I had no way of calming down or stretching to release, my parents took me to the ER. Of course as soon as we get to the ER my body had relaxed, as is the way of things (I can’t really move when a spasm hits, so we had to wait almost a half-hour in order to get me to the car). I wasn’t upset by this, I mean, not really because I didn’t want to be in pain any more. But it’s also difficult to explain to someone that, just a few short moments ago I was in the most intense pain I have ever experienced, by way of a now pacified and complete hypocrite of a body. The only thing I had to show for it was that I was totally exhausted. The fatigue following these episodes is obscene. They nodded. They took my blood. And my white count was high. Read: infection.

They did a chest X-Ray which revealed that I had pneumonia. I was admitted to the hospital that night and put on Big Gun antibiotics to knock it out (TMI alert it makes your pee smell terrible). With my still being immuno-compromised, pneumonia is nothing to mess around with. More X-Rays, more antibiotics, more nights in the hospital. What’s amazing is that I wasn’t presenting any signs or symptoms generally associated with pneumonia. Nurses and X-Ray techs kept asking me how my cough was doing, and I always had to answer them “I don’t have a cough” to which a quizzical look was always the response. Especially when follow-up questions like “Wheezing? Fever? Shortness of breath?” also got the headshake. What’s also amazing is that the muscle spasms started clearing up as the spot on my X-Ray did. They didn’t go away completely, but the regressed to about where they’d been prior to the Three Weeks of Hell. I tried to be active, walking laps around the floor- because that seems to help keep my leg spasms at bay- and sitting in a hospital bed wasn’t helping the cause.

It wasn’t until the night before I came home that we (well, my mom brilliantly sleuthed out) put together what I see as a pretty clear understanding of what had just happened to me. Why my spasms got so bad so suddenly, and conditionally why my mood spiraled out of control with it. Of course now in hindsight I do recall prior to my transplant, my doctor talking to me about chronic GvHD, and that if I did happen to have it (which was likely, given I had an 8/10 mismatched donor), that it would likely have “flare-ups” throughout my life, usually when I'd get sick. This happens because when the body gets an infection, the immune system “wakes up” (as it should) and goes to town on the infection, which causes symptoms (stuffy nose, cough, etc). At least, that’s what a proper immune system should do. In my case, because my immune system is transplanted and not my own, when it was triggered to “wake up” because I had developed pneumonia (hurrah), instead of attacking the pneumonia, my immune system got confused and started going to town on my muscles instead.

Hopefully my immune system will eventually feel “at home” in my body and not attack healthy things (like my mini muscles). The goal of this transplant is that the donor immune system will do what it’s supposed to do: keep my body free of infection, and keep cancer from returning. That’s called CURE. They say five years in remission is when cancer patients and doctors can start saying the word “Cure”. But I’m not so sure if it’s the same numerical path for me, we’ll see. The hope is to be able to get off of immuno-suppressants so that my immune system can reach it’s full potential to guard me. That may never happen, especially because I have a mismatched donor, and GvHD may be too intense (and dangerous) to ‘take the blinders off’ my immune system completely. But that’s the goal. For now, knowledge is power. Knowing and understanding what just happened to me has released some of the anxiety and depression that wrapped so tightly around me for the past month. If my muscle spasms (or my other, somewhat-less-frightening-but-still-obnoxious presentations of GvHD: so far I have five other ones) ever start to increase like they did this time around—I’ll know, I probably have an infection and my immune system just doesn’t know how to “do this” yet. The scariest part of it all (besides how bad the pain was) was not knowing why it got so bad—and that it was so suddenly and completely taking over my life for no apparent reason. Now I know.

I’m also taking other steps to build a healthier identity. It can be very disheartening when I look back over the year and it’s easy to chastise myself for not being further along than I am. I’ve fallen off the 2015 Year of Health horse a bit, but I can’t let that control me. I have to start where I am. I have begun PT for full-body reconditioning. A harrowing task, but I need to do it for my health and sanity and soul. I am starting to see a new psychiatrist and therapist closer to my home so I don’t need to drive into Boston so often. I am actively trying to gain weight (bacon). I’m doing research and learning how to be my own health-advocate (yup, even 2+ years into this thing and I’m still learning how to do this). I’ve seen a new transplant doctor at MGH for a second opinion, and he was very encouraging that we are NOT running out of options to deal with my GvHD- something that was told to me by my current team at DFCI. I am very grateful to my DFCI team and thankful for everything they’ve done for me, but I’ve had to learn that not everyone knows everything. It may appear obvious, but there you go. Lessons.

We’ve also found a clinical trial researching chronic GvHD that is recruiting new participants. It’s through the National Cancer Institute and the trial is based out of Maryland, so I hope to head down there at some point to be a part of their research. In their list of chronic GvHD symptoms, muscle spasms wasn’t even listed (my other 5 were) so I almost feel its my duty to science and other transplant patients to inform the research about this other form of GvHD #science. I know how important it is to not feel alone, and I want other patients experiencing what I’m experiencing to know that. So, to Maryland I go! I’m planning to contact them this week to start the process.

I am also drawing upon the lessons on self-care from last year, remembering what pulled me out from under last year’s depression: surrounding myself with beautiful, life affirming things: poetry and music, doing arts and projects, intentionally seeking out people and waking up earlier to catch more sunlight. Active self-care is work, but if I don’t do it, I will be doomed to the catastrophe of Winter. So I am Winterizing myself. Building a network of people I love, reconnecting with people I miss. Rilke and Rilke and Rilke. Making things with my hands when they let me, and leaving them in peace when they rebel. Allowing and reminding myself to be where I am, free of judgement and self-loathing. Stretching my muscles, watching the sky, breathing deeply. Winter, there are no strings on me.