esreviun

[esreviun]

here's a piece i don't think i've shared publicly before -- a poem/essay or essay/poem about another april 1st, twelve years ago today, written five years after the fact. it's imperfect, there's a lot i'd revise now if i wanted to take the time to do it, but i'm just gonna leave it as it is: a piece of my past, for anyone who would like to get to know me a little bit better.

extubation (2012)

for myself, five years ago.

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[esreviun]

extubation (2012)

for myself, five years ago.

I.

An endotracheal tube doesn’t come out very easily. The masses of surgical tape that hold it to your face aren’t there to keep it from accidentally slipping out of you. It’s firmly in there. It climbs up from your lungs out through your mouth and clings to the inside of your throat like something with legs. No the tape is there to keep it from moving at all. Anything— the smallest shift in your position a cough moving your arm too far— can pull a little on that tube and set your throat on fire. It doesn’t hurt— it burns. Every four hours a nurse comes in and rolls you onto your other side “to prevent bedsores.” You want to shout at them to leave you alone. You don’t care about bedsores, you care about breathing. But they still come in every damn four hours like wardens in a jail, making the rounds. It’s worst when they change your diaper. (You can’t afford to feel humiliated that you have to wear a diaper.) They have to flip you over more than once: take off the left side, flip, take off the right side, flip, put on a new one, flip, turn you over to fasten it, flip. With each flip your throat blazes and chokes you. You squeeze your eyes shut your face pressed into that horrible dank standard-issue hospital bedsheet and try not to cry from the pain. Every day. Every night. 

All this and yet when they actually remove the tube you’re terrified. You don’t want it to go. At least while it’s here, you know you can breathe— but they say that you’re probably strong enough to breathe on your own now without the ventilator. Probably?! They don’t feel like waiting until they’re sure? The nurses prop you up and get their equipment set out on the tray beside your bed. The attending makes a point of telling you: there’s a chance this might not work and you might have to be re-intubated. Just so you know. Thanks, you want to say. Thanks for paralyzing me with terror. Your bedside manner leaves absolutely nothing to be desired. She readies herself at the head of your bed and holds onto the end of the tube that’s sticking out between your chapped lips.

“When I count to three,” she says, “cough really hard.” 

She counts to three.

You cough.

II.

i haven’t forgotten i’ll never forget

III.

Junior year is when bad things start to happen, things that scare you for the first time. Pulmonology appointments were just a thing you did, until now. Like any other regular checkup. You grew up surrounded by doctors and hospitals and people poking at you and asking questions. It was normal. Being disabled was normal. You would gripe at your parents after church— after some well-meaning adult told you how inspirational you were or treated you like some paragon of bravery— saying, you didn’t envy birds for being able to fly, why would you envy other people for being able to walk? Reach things on high shelves? Take the stairs instead of the elevator? It’s not a big deal. It’s never been a big deal. Until now.

It’s the summer of 2006. Your doctors want to see you. They start running more tests. They ask you to breathe into a machine. Into another machine inside a glass box. Into another machine attached to a computer. Every time your chest rises or falls it makes numbers on screens. Every time you visit, the numbers are smaller. Your specialists start throwing code words around. Decreased lung capacity. Respiratory decline. More invasive solutions. God, you pray one night in bed, tears pricking at your eyes, please don’t let me get a ventilator.

IV.

Years later in your college dorm room you will write a poem about how it feels to hook up to your ventilator after a long day, how that first perfect breath of air rushes in and transforms you. You’ll sit there for fifteen minutes just trying to figure out how to describe that moment. It will overwhelm you. Eventually you will settle for: all you have to do is sit there and let it fill you all the way up like you’re being changed from a scribble into a sound like suddenly your shape means something but it won’t be good enough. It won’t capture it. So much of your poetry over the next several years will be trying to get another person to feel ventilated. So many of your poems will be coughs.

V.

Over the months, you shrink. September and October pass. In your high school advisory photo, which you still have today you look tiny, a massive brown striped turtleneck sweater billowing over you like you’re a sheep. When you shear the wool off of a sheep the animal underneath is thin and scraggly. When you take off your clothes, you’re skin and bones. You try to explain, to concerned friends, what your doctors told you: the less oxygen you get, the harder it is for your body to keep going. You sleep badly at night. This makes you tired. Your body works harder to keep you breathing. You burn through calories. You become bony. You can’t get comfortable in bed. So you don’t sleep well. And so you’re more tired. And so you lose more weight. It’s a vicious cycle, you say. But your doctors are going to help you break it. You have no idea how.

(You don’t say that.)

You know that to help you sleep your pediatrician suggests Tylenol PM. Every night your mom puts the little plastic cup of golden syrup by your toothbrush on the bathroom counter. You swallow it. It tastes like bitter vanilla. (You will still remember this taste in five years and it will still make your stomach churn.) You know that pulmonologists prescibe you inhalers and expensive medications to make your breathing easier. You know that they’re giving you a lot of things to make a lot of things easier. But you also know the worst part: that no one seems to be able to explain what’s happening. You hear a lot of explanations for the how but very few for the why. You wish you could sit your body down and look it in the eye and ask it to explain. It changes under your fingertips and it won’t tell you why. 

Every day you come home from school a little more exhausted and put your hand on your chest and wonder why you can’t count on your lungs anymore.

VI.

i can trust in your sinew and mystery but— never quite enough

VII.

Sometimes when it’s too much you park your wheelchair in front of the wooden computer desk in the sunroom and you put in your headphones and listen to a mandolin instrumental. The same one, every time. Kneel Before Him. Chris Thile. You’ve played this song in your ears more times than you can count now. You close your eyes and focus on the notes. The mandolin takes you away.

VIII.

You’ll write another poem in a few months about how your body has fought its hardest for you your whole life. And then you’ll write another poem about how your body has been betraying you your whole life. And then you’ll write another poem about how you can’t decide which one it is. And then you’ll keep writing those poems forever.

IX.

A dietician gives you this command: Keep a journal of everything you eat. Every day. Try to eat as many calories as you can. Eat whatever you want, as much as you can hold, whenever you’re even a little bit hungry.

In theory this is the best doctor’s order ever. In practice it’s a nightmare. You have no appetite. It’s wasted away. Early in the mornings before school you eat breakfast in the near-dark of the dining room and while your dad clears away the dishes afterward you scratch ¼ waffle w/syrup, 1 sausage, 2 oz. whole milk onto the next page of the small black notebook you carry with you now in your purse. Your dad makes you eat another quarter of a waffle. It slides thickly down your throat. You can’t remember enjoying food. You try to force down the nutritional supplements— the packets of clear starchy calorie gloop that your mom stirs into your mashed potatoes or mac ‘n’ cheese, the chocolate Boost shakes that are okay, you guess just more…cardboardy than chocolate is supposed to taste. You really try. But it isn’t enough.

They weigh you in February. You can’t stand on a scale so your dad picks you up and stands on it and then the doctor weighs him alone and subtracts the numbers. You measure 4’8”. You weigh 62 pounds. Sixty-two pounds. You’re sixteen years old.

(When you’re older you’ll wonder what the look on your dad’s face was when the doctor read your weight out. But you won’t remember it. You’ll remember the backs of your knees sticking to the rubber edge of the examination table and the weight settling into your chest.)

The doctor says the words feeding tube. You shake your head. That’s not going to happen. Ever. You tell him how on the ride home from school last week you ate an entire jelly donut and it was the first time in your life that you’d ever been congratulated for finishing junk food. The doctor laughs. So does your dad. You wish their smiles would reach their eyes.

You have to go to your mandolin when you get home.

X.

it rests on my lap, indenting the tops of my legs the smooth soft neck of it against my face my right hand gripping the far side of its body i can imagine the inside of that dark, empty body so much like mine hollow, the way the universe was before there were stars

XI.

It was important to you even before this all began, the mandolin. You’d wanted one for years. Your grandparents buy you one for your sixteenth birthday. It’s not expensive and it goes out of tune easily and you’re not very good at it. You’ll only ever learn four or five chords and a couple of clumsy strumming patterns. Your hands are a little too small and your fingers weak and soft. The callouses don’t form quickly. Your fingertips burn. But you revel in it. You’ve never pushed your body to do anything before. You dig those strings into the pads of your fingers so hard that they leave marks that last for hours.

XII.

“When I count to three, cough really hard.” 

One.

XIII.

There’s an afternoon at school when you suddenly have to leave class and go and lie down in the counselor’s office because you feel dizzy and your head is throbbing and you’re so, so tired and you don’t know what’s going on. Your heart pounds. You’ve always been scared when your heart pounds. In eighth grade you remember feeling your heart racing and worrying that something was wrong with you like you might be having a heart attack or something. And when you were a sophomore you would freak out when you felt short of breath even though your parents would always assure you that it’s okay, honey there’s nothing wrong with you you’re fine. You’re just having an anxiety attack. It feels like you can’t get enough air but you can.

In five years you’ll know that some of these times there really was nothing wrong with you and you really were imagining it. But other times your parents were wrong. Other times were preludes to what was coming next. You were right not to trust your body. You never know.

XIV.

i am covered in memorials of the times you have turned against me 

XV.

During the last week of March you’re home from school with a cold. You’ll remember that last day of school. You sat in the empty cafeteria with a book while it thunderstormed outside. The whole wall of the room was windows, and the rain and the dark and the silence of the trees heaving to and fro in the wind made you feel like you were sealed inside of a fish bowl Alex, one of your senior friends, sat down and made some jokes with you. Then you went home.

You’ve never written a poem about that day. Maybe you should.

XVI.

Two.

XVII.

Very early in the morning on Sunday, April 1st you wake up and call your mom into your bedroom to get you a glass of water. Your voice is faint. When she turns on the light your lips and fingernails are blue.

In the emergency room the nurses take one look at you and rush you back into an examination room where they stick a probe on your finger and read that your oxygen saturation is 60% and dropping. Someone gives you an oxygen mask. It seems to help. They think you’re falling back asleep.

You’re not. Your right lung is collapsing. You don’t have a cold, you have pneumonia. It’s spread into your bloodstream. Septic. Hypocarbic. Pneumothorax. Your body begins to shut down. Your parents are rushed out of the room.

(You will remember none of this. The only memory you’ll retain of that night will be protesting no, I’m FINE, just give me a glass of water and let me go back to sleep, Mom, it’s not a big deal, I feel perfectly fine. You’ll laugh when you remember this because you know now that oxygen deprivation can make a person confused or, in your case, a blithering idiot.)

EMTs and nurses crowd your bed. Someone presses a plastic mask over your nose and mouth. You’re long unconscious by now. They pump air into your starved lungs and outside of the room a nurse has to guide your mom to a chair so that she doesn’t pass out.

(It will occur to you long after this that if you hadn’t been thirsty that night you wouldn’t have called for a drink and woken your mom up and no one would have known that your body was suffocating you in your sleep. Your parents would have found you dead in your bed the next morning. Your whole face would have been blue.)

XVIII.

you have been warring me off of this territory since the moment i set foot on it and on the day when you win i will make sure that the last word is mine

i will be riddled with scars and i will not go quietly

XIX.

You don’t die. Remember this. You don’t die. You push your body against that hospital so hard that it leaves marks that last for years. 

XX.

Three.

XXI.

actually the sword is much mightier than the pen

XXII.

No hospital room has white walls— not really— not the ones you stay in with the bad lighting and the dismal curtains and various baffling objects hung up around the bed that look like surely they must do something very important but hell if you have any idea what.

(In two months you’ll recognize them all.)

But for some reason white light is the first thing you’re going to remember. Maybe everything just seems bright to you because your eyes have been closed for so long.

XXIII.

Here is what you remember from week one:

You see your parents’ faces.

They’re crying.

That can’t be a good sign.

You drift.

And drift.

XXIV.

When you’re still sixteen still in the hospital you’ll write a poem called How To Spin Starlight. It will be the first poem you have written in months— months— and it will go like this:

the stars said “spin us” and i took a weary breath and turned the universe upside-down to draw some thread from black, black stars and spin it into glittering

It will be rubbish.

When you’re seventeen one of your best friends will tell you you don’t need the last two lines and you’ll realize she’s right. All the poem is about is being turned upside-down.

XXV.

While you lie there with a tube down your throat and a tube up your nose and a tube up your urethra and a tube sticking into your foot and a tube sticking into your hand and a tube stapled into the side of your chest and a whole handful of tubes buried under the skin of your collarbone, the Easter Bunny comes.

He visits every patient in the pediatric intensive care unit. Even the ones in medically-induced comas. He bends over your pale, prone form in the hospital bed a horrifying specter of pink plush and oversized costumed limbs.

Someday you will see a photo of this.

You will wonder who in their right mind thought this was a good idea.

XXVI.

After about a week they take you off the sedatives and you think it’s Wednesday. You burst into tears when they tell you you’re wrong. You have no idea why. Your parents try to calm you down and explain why you’re here because you don’t remember and you don’t understand. You can’t breathe. You can’t talk. You’re broken.

XXVII.

When you’re eighteen you will write a poem about your mandolin.

i am acutely aware that my horizontal wrist veins and tendons are stretched out against its vertical eight strings and imagine that with a little maneuvering they could be woven together gold and silver strings with scarlet ones

You won’t have played it for years but you’ll remember the smoothness of its body the arch of its neck the friction of its strings. In your poem you will compare it to your body: this instrument which you are not very good at controlling and which sometimes doesn’t behave.

if i lifted my fingertips a quiver might start in the deep places of that body run up along that delicate neck reach the string-tips stay there—shuddering— and release a note sweet into space

It will occur to you two years later that this is wrong. You are not an instrument because when instruments shatter they can’t be repaired. Your fingers still run over the skin of your chest and your side and your hands sometimes over bumps and indentations and rough patches and you think it would be awfully cheesy to compare myself to a poem, wouldn’t it? A poem constantly being revised?

XXVIII.

The nurse’s grip tightens on your endotracheal tube.

“Three.”

You cough.

XXIX.

You’ll try so many times over the next five years to explain what that tube feels like coming out— ripping out, more like it as though it wants to take your whole throat with it. What will be harder, though is describing what it feels like immediately afterwards: the gasping, the choking, the sensation of having lost the one thing that was weighing you down keeping you from floating away and yet at the same time feeling suddenly so unbelievably heavy. The nurses fit a mask over your nose: a C-PAP machine, to assist your breathing. It doesn’t help much. You haven’t taken a breath on your own in two weeks. You’ve entirely forgotten how. They keep saying you’re all right, you’re doing fine but you’re so scared you’re shaking and so finally in an effort to distract you and calm you down someone finds a DVD for you to watch. It’s “Grease.” It’s terrible. You watch it anyway, though because what else are you going to do? Your dad stays in the room with you. It’s dark— it’s the middle of April in Michigan and the blinds are drawn over the one window anyway— and you think, I could die here, sitting in a dark room and watching “Grease.” This could be how I actually die.

XXX.

It isn’t, though.

It isn’t.