I've started writing haikus. they are not very good

again and again

bringing on this firestorm

deep and deep and deep

Well I got out of the hospital on Wednesday. My muscle spasms ramped up Sunday night, after the weekend of feeling my body start to fail. It’s hard for me to write about it, I’m sort of in a daze from it all still, what a bizarre week. This is not an accurate timeline of events, but more of the emotional journey of this week, just so you know. I have no idea what I am about to write.

When I get to the ER Sunday night, my spasms haven’t calmed down at all; which is odd because it’s usually how it goes, right? Your car is making a weird noise for weeks but as soon as you get to the mechanic, finally, it’s mysteriously silent. And so it usually goes for me and the ER. But this time they haven’t magically disappeared and I am in crippled agony huddled in a huge wheelchair in the waiting room, coughing and coughing and like, holding back my entire lung in my mouth and trying to not make too much noise but the contractions in my abdomen hands and legs makes me feel like a rabid animal. I am a wild drooling coughing nutcase but I don’t care because survival mode does weird things to you.

Everyone else in the waiting room disappears, I focus on trying to keep some semblance of sanity. I plead into my mother’s eyes afraid crying with all my energy begging trying to stay conscious and not fall into the abyss. The TV is trying to sell us some miracle cleaner or maybe it is golf or election projections what’s the difference, I’m clutching the left side of the gigantic wheelchair for my life, trying to keep my lungs inside my body and my body from breaking into multiple quivering pieces.

Finally I’m wheeled into a room and get IV Dilaudid, which is the only thing I want. And then as the drug spreads very literally up my arm and across my chest like a green-screened heat wave on the news, like the oozing radiating warmth of a double shot of whiskey; my body begins to loosen and I fall limp and cozy. In this moment I understand completely why people crave this feeling; it’s like being a baby again and your only responsibility is sleeping after being tucked into a warm swaddling cloth. Nothing else matters. I just want to sleep until it is over.

At first it appears that I have pneumonia, even though the chest X-ray looks decent; the CT scan shows some weird stuff in my right lung that confirms what my doctor heard earlier this week. Around 3am I’m moved upstairs and admitted. They put me on IV antibiotics and my spasms seem to be staved off for the time being, maybe there’s more Dilaudid I don’t know. The nurse sticks long ass q-tips all the way up my nose and jabs my swollen sinuses three times. It hurts like F but my eyes don’t tear because they can’t. Gotta check for Flu and MRSA.

These beds are the worst. I truly wonder to myself in my half-lucid moments how I spent months sleeping on these plastic valleys. I can’t get comfortable but Percocet is helping.

Coughing. Coughing. No Flu no MRSA.

I have two IVs, one in each inner elbow, which makes it practically impossible to move so I now have Barbie arms. I can’t drink anything or move so they take out one and move the other to the top of my wrist. I am at that point of my life story where I am asking for IVs to be moved. I voluntarily ask for more needles. Who is this girl.

I don’t know what day it is, I’m feeling a bit better, but the macaroni and cheese I ordered has surprise tuna in it. I am asked if I want to try ordering it again from the kitchen, as if somehow this one won’t have surprise tuna.

Okay it’s morning and now I’m coughing again, and though the spasms are not too bad anymore, I am afraid I am drowning and I would actually choose muscle spasms over this. I can’t believe I am actually thinking this to myself, spasms are like my bones are breaking, but not being able to breathe is much more terrifying in this moment. I can barely take a sip of air between lung overhauls. At best I feel like I can fill only the top three inches of my lungs, there is just no more space for air.

My head is itchy. My whole body is itchy. I am starting to feel really feverish. I crawl out of my plastic valley bed and creep to the bathroom mirror. My face and chest are the color of cough syrup, and I feel the heat coming off my body in my hands hovering 4 inches away. It’s getting worse. I feel I am on fire. My nurse stops the IV antibiotics, maybe I’m having an allergic reaction. My throat is shrinking like a smaller and smaller straw. There’s Benadryl. A cool washcloth that turns hot after thirty seconds of contact with my face. Trying to keep anxiety low because it will only make this worse. Finally my face starts cooling, and my airways start widening again.

Almost immediately NEWSFLASH THERE’S A DEER TICK ON MY HIP. Gut instinct makes me pull at it to get it off but it holds on and I can see it squirming its tiny disgusting legs. This sends me into full on panic attack. Trying to breathe into the three little inches my lungs are affording me. OMG get it off OMG get it off OMG get it off get it off. Thank god my nurse is able to get it off cleanly with tweezers but now I feel sick.

We switch to oral antibiotics so I don’t turn into a burning raspberry.

I was supposed to get out today but I’m staying another night. Damnit.

Another X-Ray, and an ultrasound of my kidneys and bladder for who knows why. Apparently they have on file that I have chronic kidney/bladder issues, which is inaccurate. I have no idea. Glad the ultrasounds are find tho?

They get my meds right for the first time this morning. Every single time I get meds something is missing or the wrong dose. Yesterday I took the wrong dose (as in, 4x what my dose actually is) of Gabapentin and Quinine (cue hearing loss: hello from under water for hours) so I am now vigilant to the meds and dosages. The pills all look different in the hospital so it’s hard to do the mental checklist, but today, it was correct on the first try. Praise Jehovah.

I’m getting nebulizer treatments now; the pulmonologist has a loud warm voice and caring presence. The albuterol neb makes me so shaky I am visibly trembling for a few hours after each one. But I can breathe deeper than I have been able to in days.

It seems I do not really have pneumonia, but rather the stuff showing up in the CT scan is probably a flare-up of my lung GvHD caused by some viral infection they can’t really treat. It just has to run its course. They keep me on precautionary antibiotics just in case. Thankfully my spasms have slowed down considerably.

My nephew is here, he is telling me about the bad bugs that get into your blood, and that they need to send the good bugs to kill the bad bugs. I am amazed at how well he understands these things. He talks for about five solid minutes without any pauses and finishes his lecture with “So you just have to get a laser-blanket to kill the bad ants on your bed.” Sign me up for a laser-blanket.

My hot water with lemon was actually hot this morning! What providence! But no matter how much I drink I still have a desert for a mouth and throat.

I am getting ready to go home: here’s a folder with 50 sheets of paper describing in three different ways which medicines I’m taking and when. I will have a nebulizer machine delivered to my house today.

I get home and immediately crumble. The setback of a hospital stay is suddenly immeasurable, and as soon as that survival mode wall comes down, the exhaustion and anger waiting on the other side bursts through with full force. I am angry and depleted. It defies explanation.

I am sad, I am hurting, I am sorry. I want to crawl to a place of non-existence. I want to give my feeble chance at life to someone else. I am tired of the hurting, I want to disappear.

I am sorry. I’m sorry, I’m sorry, I am saying this over and over in my head as I cry my wheezy tearless whimpers, covering my face asking for this to be over. I cry for Ian. It’s arbitrary it’s illogical. It’s a mess. It makes no sense I can’t grasp it. I want to trade my life with someone who wants it more than I do. I want to give my life to Ian. I am so sorry I am causing my family pain. My mouth and throat are so dry and I am shaking and shaking. My hands spasm and it feels they will break themselves into splintery bits.

I’m sorry. I’m sorry. I should live for you, I should want to live for you because you couldn’t. You had no choice, you had to leave. I am left here with a crippled body driven by pills and depression; I’ll never do anything I’ll never get out. I’m sorry. I want to live for you because you couldn’t. I want to live for you but I hate this life.

I am afraid.

Mental exhaustion takes over the wheel and I am despondent. I can’t move. I am lying sideways across my bed or sitting in a chair. I am coughing up shit from my flailing lungs. I am hungry but I cannot eat. I cannot feel much, if I let myself it feels like I will die. So I don’t.

My mother is scared, and I’m sorry I can’t talk. I’m sorry I can’t move. It’s not a choice.

My mother reads to me and I sleep for a long time. Every time I am wracked with gruesome and emotionally taxing nightmares. My depression rages in my dreams and it lingers when I wake up. I know they are just dreams but it wreaks havoc on my mental state.

I am afraid I will not get to my goals. I am afraid that this is the rest of my life; I am the space between ER visits; losing ground with every bad day, stumbling further and further behind the starting line. I want to be doing things, I want to be working. I feel guilty. I want to dance. But the war zone of my body is a baited trap and who knows what today will look like.

I’m a slave to medicine. I have three different nebulizer treatments. One of them I’m supposed to do every six hours, the second one twice a day, the third one as needed. So basically a full-time job with that and my other 25+ pills a day. I am getting less shaky with every neb treatment so, progress.

I write so I may be free. It seems to be one of the only places I can find these days, even though what I’m trying to describe is an incoherent nightmarish fiend. I also write this with some small hope that one day I will look back on this 

and not be this any more.

so I may be free

the earth turns.

and so I wait, patiently sometimes

other times,

crumpled on the floor

crying

cursing

craving

death

also life.

it doesn’t make sense, but

I don’t see how it could, really

one day in the middle of it,

climbing the steps, crushing darkness but

the next gutted on the floor

the next slamming my head on anything hard

with aluminum solidifying my lungs and creeping

up my neck; it means to do me in-

next rounding the bend

then waiting

waiting

I don’t know why. It

doesn’t make sense.

the earth turns.

That veil, vaguely painted

in the minds of some people

the other side of the door

others: a dark cavern open mouth swallowing thoughtlessly

or a beam of light

or a wisp of smoke from

a candle blown out.

It doesn’t make any sense

the birds are chirping and

daffodils are rising and falling

a pale robin’s blue shell burst on the ground, smeared

on the pavement, it’s baby yolk

intact, untouched

it’s mother wondering where it’s gone to

reminds me how close we are to life then death

how close we are to nonexistence.

It doesn’t make any sense

Earthquake after earthquake, what

now, four in one week? More?

Is it el Niño or is it the slow death

of the world

creeping up on us, finally

after it’s unhurried exhibition for the last century

following industry and heat and heat,

fossil fuels broken out off the mantle

causing our own kinds of earthquakes

for profit

for production

to employ people, quick, before it’s over—

and we won’t know,

when it’s over

because ceasing to be is very quick

that veil between us and them so

thin

not majestic

no choirs

we could have died a thousand time already

and had no idea.

the multi-verse singing its ever quiet song of enveloping galaxies

swallowing dark matter and stars whole like a python sick with a fully

skeletal rabbit. Filaments and superclusters and universes collide and

it’s anticlimactic. All the bad hard shitty stuff

already happened. It’s already happening

in front of our dumb-by-prolonged-exposure eyes

and even as we yell, “I!” like it matters

“I!” like it makes a difference. It doesn’t make

any sense, but

as winter turns to spring and

earthquakes shake the crust of the world

opening mouths for us to fall in,

while the earth catastrophically implodes--it

does not need us, for sure.

It does not need us.

It means 

to wash away the blunders of a parasitic malady;

to wipe our existence away, quick and efficient like a mother’s soft hand

wiping ice cream off her daughter’s face. It’s quick and virtuous

like the thousand times before this time, tired from years of no sleep

from the pain of birth to the pain of death, tenderly she holds

a wet cloth to mop up the mess we’ve made; her daughter’s face

a world of possibility, a planet just starting to spin:

and the tumult of a toddler learning

she can act on her own. But she’s sticky

with that pinkish anarchy, its melted remains: half ingested,

half plastered half dried down her chin, and

the mother will do her job,

the ocean will do it’s job

the trees will wilt and fall

the wind will carry on without a thought to us

age old must, rocks crushing into dust

the void, the galactic nuclei

screaming on and on in noiseless space

for thine is the kingdom the power the glory

forever and ever amen.

process

I feel that the best I have right now is just the things sort of spilling out of my brain. It's not tidy or revised. I'm processing a lot so it's just where I am.  And so much of the time it's dark and hard, and so often I don't write at all because all I have is dark and hard. But I'm trying to shed light on the dark and hard. And you have allowed me to do that. To be where I am, and I have allowed you to see where I am. So. In the words of Milosz:
To begin where I am.

-------
it's corrosion

this slow death 

under the surface

rotting out like water-logged 

wooden beams of the dock at the lake-

its algae covered legs giving out after

one too many joyful leaps

one too many years of mucilage and fish shit

one too many high tides.

It’s not quite like the death of an animal thing,

it’s not visceral

not like road kill:

something shockingly alive

breathing heavily the air fresh from 

the roadside grasses and nettle

living courageously in small ways

and then

with a frightening flash of crushing pain,

gone forever.

So maybe it’s something like

a perennial

blowing out its last breath of summer

before the first cold night of the year.

Do they expect it?

Do they wait for it, patiently, calmly, inviting the Fall?

Do they know they live?

Do they know

they will curl up and slump to the ground

to decay into the earth

and become atoms to nurture next Spring’s crocus?

Do they know they live?

Do they know the sound of a deer approaching?

but it is cyclic

and natural, whether there is instinct involved or not.

whether there is knowing

or not.           

Would it be better to not know?

To just flare up

like a flame burning down

a fiber wick and can’t see how much wax is left to go?

And honestly, doesn’t care one bit.

Not knowing why or where you came from,

what you’re doing or where you’re going. Just

charging full force ahead doing the one thing you

know how to do

until slowly

at first,

then there’s

less and less

wax to feed the hunger,

less and less

atoms

to nurture that

little red ember until

with a tender

glow

and a tendril wisp

no sound to announce your passing,

silently

you are just gone. 

"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