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Lights off in my thoughts. In My Head Again.

June 16, 2015

It is dancing in my veins. It is dancing in them as I dream. Oh yes indeed, I let the bad things in. Drawn to the blood stream by a force stronger than its ability to resist. Why should it? This is what it does. This is how it survives. Carried on the tip of a needle. Microscopic in size. Oh, how it dances. My insides are no good at fighting. Ballet was never a strong point of my immune system. Especially now that it has been suppressed by drugs. It is at a weak point, readying for something big. This is how the slim and silent thing gets in. My dreams are fever dreams and that’s how e gets in. In a white t shirt all rumpled. I stand on his feet with my arms wrapped around his neck. He stands in the kitchen a kitchen that is not mine a fabrication. I lean in and say softly, so my breath tickles his beautiful ear. ‘’I know I could live a life with you. But, you could not live a life with me. Could you?’’

He smiles and I gaze into his blue gray eyes. He shrugs and Places his closed fist under my nose and then opens it to reaveal whats nestled in his palm. It is a tiny man made of orange sand. He feeds it to me and I eat it. I would do anything for you. I tell him. He shrugs again and wraps his arms around me. He whispers unintelligible things and the very breath on which these things tracel, seem to catch and carry themselves in through the ear and set up camp in my blood stream. A blood stream already full of dancing and dangerous things.  My blood stream continues to be invaded while I dream all this. It is gracefully fly kicking my insides to nothing. It is dancing in my blood stream, Carried inside on the tip of a needle. Would you rather have a heart attack? Better ponder before answering that. It may be a surprise as to what can kill you from a simple unchoreaograped routine of destruction. The battle rules just switched inside.

It is Sunday when the doctors arrive and stand around my bedside. There is Doctor Hughes and the silent doctor who makes notes, the doctor called Sarah and a doctor called Kathy. Doctor Hughes is the one who speaks first. ‘’Jess, we have some bad news. You have an infection that is in your bloodstream. It’s a fairly common infection prevalent in hospitals.’’ He tells me. ‘’You have Staphylococcus aureus, otherwise known as Golden Staff.’’

I sit and stare at them all in turn. Doctor Hughes continues. ‘’Unfortunately this means that we need to concentrate on getting rid of the infection before we can hope to go ahead with the transplant. ‘’

‘’So, I will have to do all this again?’’ I say gesturing with my hands at my surroundings. ‘’I wont get flowers as nice as those again.’’ I say waving a hand at my windowsill.   ‘’Dr Hughes says that I will, he is sure. ‘’We need to have you as healthy as pssible before the transplant. If we go ahead with something as big as that, while you are infected, it will put far too much pressure on your body and you will not survive.’’

‘’Is this because I popped my stitch and the wound got all open and everything?’’ I say. Oh my god, what if this is all my own fault? I think.

‘’Its hard to say, the infection is usually attracted to wounds and the tubing from permacaths and fistulas. The problem here is that with your permacath, there is a direct tube leading straight to your heart. We do not want the infection getting to your heart so we will need to get a surgical consult to remove your permacath.’’ I do not think to ask how they will do that, in that moment. I am too consumed with the realization I will have to get the permacath inserted again.

‘’You will need to stop all the pre transplant medication.’’ I am told. ‘’Do you have your Dad’s number?’’ I give him the number. ‘’Shall I call him as well? That way we have a better chance of reaching him.’’ I say. The doctors discuss my treatment options. I am asked if I am allergic to penacillan. ‘’I am.’’ I say. Endocarditis is the infection of the heart valve that I could get if the infection gets to my heart valve. The doctors organize a heart scan for me, a cardiogram. I have had one of those recently. I say.

‘’Yes, but we need to see your heart and its valves as they are now. Hopefully free from the Golden staf infection.’’

‘’Oh, right. How do you treat the infection?’’

‘’With antibiotics, administered through an IV.’’

‘’How long will it take to kill the bugs?’’ I say.

‘It depends on how your body responds to the antibiotics. Hopefully you are not resistant to the antibiotics.’’ Dr Hughes says.

‘’When will the permacath be removed?’’ I say.

‘’As soon as possible, we will go talk to surgical.’’

That could take forever and I will be dead by then, I think. The infection could be running down the super fun tube, directly to my heart AND laughing all the way.

When the doctors leave me alone. I try and call my Dad, but his phone goes to voicemail. He and mum must be at church with my aunt and uncle, I think. I leave a quick message, ‘’Hi Dad. The transplant is off until they get rid of the golden staf infection.’’

I texted Leong. ‘’No transplant until they have the golden staf infection out of my system.’’

Then, I remember something. Something that makes me smile. I text Ace. ‘’Did the disease you had when 17, was that Golden Staf? Because I have it. We are basically twins!’’

He texts back and the answer is yes. I may not be able to share a lifetime with him. But, I can share this. It makes the whole disaster seem less like a huge disappointment and more like a weird way of proving the invisible world he and I share. The time and place may differ but the infection stays the same. Its just a shame that the infection causes a whole other trajectory to stop and freeze.

I lay my phone down on the table next to my untouched breakfast.

The man in the bed next to me tries to charm the tea lady.

‘’Excuse me.’’ He says. ‘’Can I have sugar? I do not like this equal stuff.’’

‘’You are a diabetic.’’ She says. ‘’I cannot give you sugar.’’

‘’Would you give me sugar. If I told you that you look very beautiful today?’’ He says.

‘’No.’’

It is the surgeon who inserted the permacath, that comes to my bedside, ready to remove it. Nancy looks fresh and clean in her blue jeans and bright white fitted top. Her shiny black hair pulled back in a ponytail. She sits on the bed and leans so that her hand resting on the bed with her arm over my legs, is bearing her weight. She smiles. ‘’Hello, Jess.’’ She says brightly. ‘’Ready to say goodbye to this thing?’’

‘’Yes. Is it going to hurt? Why am I not being put to sleep for this?’’

‘’It will only take a second.’’ She says. ‘’Because its only been in a little while, it wont be difficult to take out.’’

‘’Did they tell you why it has to come out?’’ I say.

‘’Yes and it is for the best, I promise you.’’ Nancy says. ‘’You are too important to put that body of yours into any more danger than it already is.’’

Nancy put on some white gloves and placed a large white square under the permacath. I was about to reach up and help Nancy place it under the tubes and smooth it out over my breasts but I remembered not to. If I did that I would contaminate the hygienic area. Once the square of sterile gauze was ready, Nancy used surgical scissors to snip the stitch. There was a slight tug feeling. After that she smoothly and without fuss removed the tube that was connected to a heart ventrical, inside my chest. I felt absolutely nothing. I was a wash with relief and amazement. Nancy pressed one gloved finger over the exit point, in order to keep it from pissing blood. ‘’I need you to press a finger over where my finger is.’’ Nancy said.

‘’Ew, no way.’’ I said with a look of horror. Why was I being so weird and grossed out by my own body? It was just an opening, a small window that broke down a tiny bit, the wall separating my internal fleshy self from my outer layers. I was not wearing a glove and the thought of touching the place that, frankly, caused this mess in the first place, was icky to me.

‘’C’mon, Jess.’’ Nancy says. ‘’I need to put the tube into a specimen jar and then I need to stitch that wound up.’’

I relented and co operated with my eyes squeezed shut and grimace of disgust on my face. I placed a finger over the spot where Nancy’s finger used to be, and I pressed down. Nancy held up the bloody tube and placed it in a plastic jar. Nancy took over with her finger and proceeded to stitch the tiny wound. ‘’I’ll make a nurse out of you yet.’’ She said.

‘’That whole experience was not as bad as I thought it would be.’’ I say.

‘’Can I ask you for a favour?’’ Nancy says. I nod.

‘’When it is time for me to do your transplant, can you make sure your hair is bright blue? I would really like to see you in blue hair. I want it so much that I wont carry out the surgery unless your hair is blue.’’

‘’O.K. Sure.’’ I say, not meaning it. I mean, it cost so much to get the purple done professionally. I did not have that sort of disposable income.

Later near 5pm my parents arrive to visit. They arrive as Dr. Tom is about to insert a new canula in a vein in my inner arm.

‘’Jess!’’ My Dad says. ‘’Why aren’t you looking at the needle going in. It looks so cool.’’

‘’I deal with these in my own way. Dad.’’ I say.

‘’She has probably seen enough of them by now.’’ The doctor says as he traces the vein line with one of his fingers. He finds the position he is pleased with and brings the needle closer. ‘’Just a sharp scratch.’’ He says softly. I breath in as the needle goes in and then let the breath out slowly. Mum and Dad watch from their standing positions at the end of my bed. ‘’Oh dear.’’ I hear hansom Dr. Tom say. ‘’Keep your arm very still for me.’’ He says as he grabs some cotton balls and daps them around the canula area. I glimpse the cotton buds as he throws them in the medical waste bin. They are stained dark red. Once it is all cleaned up, he places the clear plastic bandage over the area where the needle went in. The blue tube stays free to be connected to an I.V of antibiotics when they decide on what type.   The doctor chatted with my parents for a bit, explaining what was going on so far and what it meant.

‘’We had a ride to the hospital organized and everything.’’ My dad says cheerfully when told that the new date for the transplant was no longer viable. My heart hurt for him. He was so ready to help me and be a part of getting this body of mine working better again. As my uncle Wes was out of town for business. My parents and my aunty had organized for my cousin’s husband to drive Dad and Mum to the surgery check in at 6am. It was only Lachlan that scored from all this. He no longer had to get p at 5am for such an annoying yet terribly important favor. ‘’I got you this.’’ My mum said, after kissing me on the top of my head. It is a tube of hand cream.

‘’Thank you.’’ I say as my Dad hugs me.

‘’You should have seen the way your blood spurted out just then.’’ My Dad says. ‘’It was like a small red waterfall.’’

I laughed. ‘’Sorry that I was staring at the ceiling instead of drinking in the scarlet visuals that I was clever enough to create.’’ I say. When I glance at my arm with the canula, I notice that there is bruising already appearing around the needle entry area.

‘’You have to be difficult don’t you.’’ My Dad laughs. It is a sound I find comfort in. All is not lost. Just momentarily stranded.

‘’Nancy says I am too important to risk loosing.’’ I say.

‘’That’s a nice way of putting it.’’ My Dad says. ‘’The fact that they stuffed up.’’

‘’Golden Staf is quite common in hospitals. Its attracted to the tubes and things that lead the infection so easily to blood and peoples delicious insides.’’

The fact that is happened often was little consolation in the grand scheme of things.

A doctor comes in while my parents and I are chatting. She sits on the chair and looks at her clip board. I am sure we have met before but I cannot remember her name. She has a blonde bob and a pink button up shirt on. ‘’We just need to get your details.’’ She says after greeting us and asking if now is a good time.

‘’My details, again.’’ I say with a laugh. ‘’O.K.’’

I give her my name and address. My address has changed but it was too complicated to explain so I just gave her the Brunswick rd address. When she got to the emergency contact. I said Leong’s name as I had before. My parents did not do a good job of hiding their their excited and interested expressions.

‘’Relationship to contact?’’ The doctor asked.

I took a deep breath and said. ‘’Boyfriend.’’

‘’Oh, what!”” My Dad exclaimed.

‘’Since when?’’ Mum said.

The doctor looked up from the clip board. ‘’Is there a problem?’’ The doctor says.

‘’Oh, no. We LOVE Leong.’’ My mother says and I screw up my face in distaste of her over exuberance.

‘’Its nothing it just makes these forms easier.’’ I say.

The doctor hands me the clip board and a pen. I am to sign a form saying that I give permission to be treated for the infection of Golden Staf. Also that I absolve the hospital of any legal ramifications that I may want to start. I could not be bothered doing that anyway. What a hassle it would be. I would have put my mother or father down as emergency contact. I would have if they did not constantly fail to answer their phones.

My parents leave after hugging me. Leong arrives with take away food and We eat together. I do not even get half way through my share before I feel full and queasy in the stomach. He reads to me for a little while and I stop him to say. ‘’Can we get a cat and call it Tobias?’’

He stares down at the open book a moment before answering.

‘’Sure.’’ He says.

After a few more pages of the book, he gets on the bed with me. Hospital beds are not made for two average sized people. Hospital beds are barely big enough for one tiny person and one average sized person.  We make the bed head go up right a bit more and Leong sits up against the pillow with me and one of his arms around me. I set up the lap top and give him one of the ear buds so we can both hear The Simpsons but, nobody else can.  I lean my head against his shoulder.  This is the island in the medical storm that wails and beeps around us. The sound of squeaky shoes as they rush to a patients bedside. There is the sound of blood pressure machines being wheeled around. There is a met call over the loud speaker and a few code grays. Leong and I watch and giggle at things we have both seen a heap of times. He stays till 8;30pm, a half hour over the end of visiting hours. But, nobody seems to mind.

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