I was going to write yesterday but I recieved an upsetting email, that can only be classified under the umbrella of rejection and this jettisoned me down a self loathing shame spiral. A shame spiral that had me do nothing all day but listen to the Le Tigre back catologue in its entirety twice. This only killed exactly 2.34 hours. It did however make me feel quite determined and like I never wanted to see my boyfriend ever again. The idiot.
The email was in relation to the internship at the literary magazine The Lifted Brow. Itsaid I was unsuccessful and not to take it personally. It also said to please come to the christmas drinks and say hi.
I know what that means.
It means by all means come and hang and shmooze and be cool so we know how well you can shmooze and act cool, so we may consider you for the next internship where we will make you work your ass of for no money, just so you can tell everyone you were cool enough to get the experience of working your ass off for no money at a literary magazine as cool as The Lifted Brow.
I am bored halfway through the very thought process of such a notion. It is hard to schmooze when your body is packing up and the lack of clean blood in your system makes it hard for you to even pretend that people are interesting. I did go to the best of the brow launch at Brunswick Bound. Perhaps getting drunk on free wine and rubbing me cheek against Ronnie’s shoulder, was not the kind of shmoozing the people at The Lifted Brow were thinking of.
But I digress.
Sitting in the waiting area of The Nuclear Medicine section of the hospital. I sit with my mother and father. My mother is sitting with a bandage around each of her arms. One has a caliiar in it for the nuclear stuff they put in once to look inside her and the other arm has caliiar for the simple task of taking blood every hour for four hours. I think it is exactly 10mills every time. I am hate reading a Cosmoplitan magazine. My mother is reading a New Idea and my father is reading a catalogue of agricultural equipment, he bought along from home. He is wearing his work blunt stones, that are worn and dirty. I like that he wears them though. It comforts me, those boots have done many things, things that the skinny latte sipping kids I hang with, have no notion of. Those boots know why my father has a perchant for falling asleep at the dinner table, or why he will fall asleep later today.
‘He has new boots but he forgot to put them on before leaving this morning.’ My mother explained. No doubt it was because, in order to get here at 9am they would have had to leave the farm at around 6am.
‘My body typeis none of these four described!’ I exclaim in disgust, throwing the magazine down, on the chair next to me.
‘I always considered you to be elfin.’ my mother says. I kiss her cheek and say. ‘Well, apparently the people at Cosmo do not think that is a proper type of girl.’
My parents do strike up conversation with the woman sitting across from us. They talk about me off course. I am why we are there in the first place. I am always why my parents are in these sorts of situations. I am special.
‘When she was in grade 2 she was a lion in the school play.’ My father excplains to this kind woman. ‘and there is a photo of her in that constume looking utterly devastated, because she hates being hot and the costume was so uncomfortable for her.’
‘The costume did not breath.’ I defend my sookiness.
The woman looks at me and asks, ‘Were you ever in a play again?’
I look at her and then away in a far off thoughtful gaze. ‘I think of my entire life unfolding on a stage and everyone just flits in and out of my spotlight. I am inherently theatrical. Always.’
The woman’s face breaks into a smile and she laughs openly in relief. In relief that there is something to laugh about in a place such as a nuclear medicine waiting area.
I decide to show my parents the artical about my poetry by my friend Mel. I am not sure why I do something so foolhardy, call it boredom or a desire for them to see me as something other than a constantly ill little girl. They bothe slouch over my phone trying to read it at the same time. ‘You like like wheres wally in the photo.’ My father laughs. After a few moments my mother gives up and lets Dad read it. He laughs a couple of times at first. But then he gets quiet. I get worried. He hands the phone to my mother and gets up. ‘I am just going to the toilet.’ He explains.
Mum gets halfway through and then presses something accidently and looses the artical. My father returns and says. ‘It gets worse anyway.’ when my mother said she only read half. I was hoping they would have some funny remarks to say that I could record but alas I forgot that being mormon makes it difficult for my parents to see the funny side of thier oldest daughter discussing why she is glad she slept around because it helped her writing. It was probabley a shock for my dear old Dad to be confronted with such concrete evidence that his daughter did seem to be a good example of the bible quote we were made to learn as kids/ It goes like this.
‘Train a child in the way he shall go, and when he is older he shall not depart from it.’
Yeah my siblings and I really shattered that assumption.
Soon it was time for Dad and I to leav mum and go to my dialysis info session called Dialysis: An Introduction. There were going to be snacks, a fact for which my father and I were very excited. I would have enjoyed some gin and tonics, even cheap gin and tonics. I fell this would have really lubricated everyone against the pure horror of such a concept as walking around with a tube in you at all times that helps you drain 2litres of sugar water through your entire body four times a day.
As I sat in the passanger seat while my Dad droveus to the other campus of the private hospital near The Melbourne Zoo, I though of sitting with Ace in a booth at Thousand Pound Bend. We were discussing m transplant and the possability that I may not take my mother’s kidney and may need dialysis anyway.
‘It will take.’ He said. ‘It has to take.’ I looked into his face and was so surprised to be met with such sincere worry. Was he actually worried about me?! It was in his eyes and I wanted to reach out over the sticky table top and take his hand in mine and give it a squeeze. Not to be provocative. Just to try and assure him. I wanted to take his hand and simply hold it a moment so as to say silently. I will be O.K, kid. It is not worth your worry. But I did not want to lie to him. I was not entirely sure myself, you see.
While I was lost in that reverie, my father was getting disgruntled at the busy traffic up royal parade. ‘It would a lovely street to walk down if I was not looking for a blasted parking space!’ After doing a few u turns and doubling back. My father found a parking space.
The room is set up for a lecture in half of the space and the other half is a set of tables with snadwiches and more sandwiches, plastic cups and unopened bottles of orange and apple juice. We are not the first people to arrive but close to it. At the front row of chairs sit an old man with an impressive white beard, sitting in a wheelchair. A man who seems to be his son is sitting in the first chair of the front row, next to his father. The son is wearing a yellow polo shirt that sets off his dark skin quite nicely. I place my bag and plastic pocket full of dialysis information, including a book with the title; Living With Kidney Failure; An Extensive Guide. Another thinner booklet with two mature aged people looking at each other happily on a beach, has the title, Maintaining A Healthy Sex Life: Information For People With Chronic Kidney Disease.
A man with a lanyard round his neck and a practised friendly smile looks at his clip bourd and then at me. ‘Your name?’
I give it to him.
‘You are not on the list.’
My father jumps in. ‘That is because she did not read the referral letter all the way through and thats why she did not know to RSVP.’
‘I got bored halfway through the letter. It is not my fault I am so vague. Blame my kidney failure.’ I say.
Dad sits down next the the man sitting next to his father and strikes up conversation. I fill a plastic plate with sandwiches for my Dad and a cup of juice. The old man must be starving. I hand the plate and the juice to my Dad, who is asking the old man in the wheel chair how he lost his left leg.
‘I was playing cowboys on a train through the Egyptian desert,’ he explained. ‘I was hanging out of a window and I fell out. The train ran over my leg. I rolled off of the train tracks and lay there for six hours. I closed my eyes and tried not to be too scared of the wolves I could hear, coming out when it got dark. Eventually I was found.’
I stood eating a sandwich watching this old man speak so calmly of such a terrible thing. The air con gave off a rather loud hum as it cooled the brightly lit room. Other people had started to arrive and the chairs were filling woith people. All old nobody my age at all. Two women had arrived with lanyards around their necks. One wearing black jeans and the other in a red dress. They spoke briefly with the man with the clip board. They stood together with eas and their fluid hand gestures and tilts of the head all lent to the fact they must have been working together a while.
aLL THE CHAIRS WERE FILLED NOW AND EVERYONE WAS FACING THE LARGE SCREEN WITH THE TITLE OF TODAYS SESSION IN BIG tIMES nEW rOMAN bOLD. I sit down next to my father and take a notebook and a pen from my bag. I was going to treat this like any uni lecture I had ever had. Only difference was I was way rusty at taking notes and soon grew tired of it. Also I would only get a few words down before the person standing at the front giving the talk, would go to the next slide of information.
Your kidneys remove waste products, remove extra fluid, make and control important hormones and control blood chemistry. Kidney failure needs to be managed properly to
reduce the risk of cardiovascular disease
prevent bone disease
control acid base balance
I have bone disease, I thought as I listened to David. He spoke like he knew this stuff backwards but was not bored by it.
A list of symptoms was put up.
increased blood pressure
change in the amount of urine passed.
blood in the urine
puffiness around the eyes and ankles
pain in the kidney area
disinterest in sex
loss of appetite
trouble thinking clearly
shortness of breath
nausea and vomiting
pins and needlies in the fingers and toes.
‘Do any of these sound familiar?’ David asked.
‘All of them.’ I said loud enough for all to hear.
Once David had given a short introduction it was the woman in the red dress’ turn. She had long brown hair and a large nose. She was going to speak about the nitty gritty of dialysis and the options involved.
She also had a large blue bag of examples of dialysis bits and bobs. Including a large clear plastic thing that was about half my size. ‘This was a two liter clear container that would be filled with glucose solution to flush out and clean my blood.
My hands became clammy as I listened and I kept rubbing them on my dress.
Dr Willem Kolff is considered the father of dialysis. This young dutch physician constructed the first dialyser (artificial kidney) in 1943.
There are two types of dialysis to choose from. yay!
access to the peritoneal cavity for dialysis is via a peritoneal dialysis catheter which is a soft plastic tube about 0.5 cm in diametre inserted into your body during surgery. It stays in your body for as long as dialysis is needed. Some of the catheter is outside your belly. This allows dialysis fluid, to be moved in and out of your body painlessly.
At this point in the lecture, a unused catheter is handed around for us to look at. I take the tubing and am surprised how long it seems. Half of this tube will be inside me. I rais my hand.
‘Do these tubes come in a variety of colours? I would like to make plans for wardrobe options.’
‘No, they simply come in grey or green.’ The red dress lady tells me kindly.
I consider this a moment then rais my hand again.
‘Would I be able to bedazzle my catheter with glitter? Or perhaps a googly eye ? This way I could give it its own identity and introduce it to my friends.’
‘I am afraid not, It would interfere with the high hygeinic standards that need to be maintained throughout your treatment.’
In 1923 George Ganter performed the first clinical applicationof peritoneal dialysis in Germany. He prepared a sterile solution that containedelectrolytes with dextrose (sugar) added for fluid removal. The solution was placed in large bottles that were then boiled to kill bacteria. The solution was fed into the peritoneal cavity via rubber tubingattached to a simple hollow needle.
Haemodialysis is where your blood travels to a dialysis machine, where it passes through a special filtercalled a dialyser, befor being returned to your body. The dialyser removes waste and helps to balance fluid, minerals and chemicals in your blood.
The dialyser is a plastic cylinder containing thousands of very tiny tubes. Blood is pumped into the dialyser and flows through the fibres. Artreo-venous fistula is created by joining an artery and a vein, usually located in your upper or lower arm. A small operation is needed to make a fistula. it is created a few weeks or months befor dialysis is needed. This gives the blood vessels time to strengthen and grow. The cut to make a fistula is 5 to 8 centimetres.
A fistula usually has fewer complications than the two alternatives which are a prosthetic or artificial fisula, a special catheter which can be long term, but is usually temporary untill a fistula or graft is ready for use.
Needle punctures heal well so infection is less common. There are fewer problems with blood clotting and a fistular often has longer life, lasting for many years if well cared for.
There is a buzzing feel as the blood moves from the artery to the vein. This feels like a cat prring and is called a thrill.
The buzzing means the fistular is working. If the buzzing stops or slows, you ned to contact a doctor as the fistular could be blocked.
By the end of the two hour lecture, I felt pretty overwhelmed. Dad stretched out and yawned as people gathered their things and made to exit.
‘I feell asleep there for a bit.’ My Dad said.
I checked my phone. and there was a text from the boyfriend.
‘Hey bagel babe. Do you need my pressance? not presents. I spoil you enough already.’
The storm gathered inside me and the clouds were heavy and black with rage.
Spoil me? what am I, a child or a demanding shrew of a nightmare. I do not make him go and buy 16$ cheese when going to the supermarket. He has no idea how little I need him. I can do this on my own if need be. I will show him spoilt. I decide to not see or speak to him for a while. this weekend I will not see him or invite him to my friends gin and tonic afternoon. I am furious. I never demand him to buy me anything. Helping me buy bread so i have something to eat, is not spoiling me, it is being kind, but if he feels the need to throw it all in my face in the name of spoiling, he can go to hell. I am sitting in a consulting room of the hospital learning about my options for dialysis and he thinks i am spoilt? I can live without nice things. I really do not want to see him. I am better and stronger facing this boyfriendless. That should unburden him from my constant tiresom demands.
I put my phone away and place my plastic pocket full of dialysis and maintaining a healthy sex life with kidney failure, pamphlets away. I do not want a healthy sex life maintained. I just want good conversation.
When my father and I return to nuclear medicine, my mother is sitting right where we left her. Sitting quietly with a bandage still round each arm. I fill a paper cup with water from the water cooler and drink it down. I can feel my optamism ebbing to all but a past memory. Ebbing ebbing and going down. I cannot see a good thing at all for a moment. Nothing to hold on to or live for. I think how clever those who do not love me are and continue to be. I just want to be loved by someone as smart and fearless. Someone who is happy to talk untill the sun is peaking up. Who when we do go out, has more to say then what the food is like.
Why cannot this simple thing happen?