today I wept

I cry for the futility.

I cry for the waste.

I cry for my friend who's body is failing her; a body that is rebelling against her because it simply wants to stop. It is tired. She is tired.

I weep for what may be and for what may not come to pass.

I cry, but I'll keep believing, because that's all we have. Faith and love. Two true certainties.

Eliza Matthews

I was wheeled into the ward. Groggy and shaken, I’d had three days of asthma attacks and vomiting out my guts, and the world was fuzzy. In one corner of my room was an old Chinese lady. Dying of lung cancer, her family would visit her at all hours with what seemed to be a fifteen-thousand-course banquet. Out would come the chopsticks. Once that happened, the family would talk in loud foreign words not seeming to care about me or the other languishing occupant of our space. I didn’t care that she was dying because I hated all the noise that she brought to the room. I was sixteen years old, felt like crap, and just wanted to sleep.

In the other corner of the room was a girl with short blonde hair. Face swollen from the steroids, her Mum visited at all hours. The curtains were often drawn so that people clad in sterile gowns could beat her chest and administer mysterious medications in scant privacy. When the curtain was open she often held a tube to her mouth that made a fluttering noise. She was 19. I knew she was dying.

Unlike the noisy old Chinese lady, I liked her. She didn’t seem to notice me much. The weight of the world was on her shoulders, and unlike her serious illness, my asthma wasn’t something that was going to kill me. I felt guilty for being in a room with her. Put in the same category as her. I thought that she deserved better than to be dumped in a public hospital with a medical fraud like me who was most definitely going to survive, and a noisy Chinese woman who had enjoyed a long life.

She was polite and would smile at me occasionally, but her focus was elsewhere. We had the same doctor—an amazing man who would visit me, then her. From eavesdropping on their conversations I found out that she had Cystic Fibrosis and her name was Carly.

CF was something I’d heard about, but I didn’t really know the details of her illness. I knew it meant that her lungs were really bad and that she might well die. From listening to Carly cough and struggle with breath, I knew it meant she was drowning from the inside. I knew it meant new lungs or the unthinkable.

For some reason this girl, who understandably paid me very little attention, had a profound impact on my psyche. I don’t know why, but I felt for her. Not pity, but hope.

Four days later I was discharged and she stayed.

After that time, I always wondered what had happened to her. I’m not a religious person, but over next couple of years I would think about her on and off and send a little message to the universe wishing for her survival.

Just under two years later, not long after I turned eighteen, I saw a picture of her in the paper. She’d received new lungs on my birthday. I was struck by the coincidence that we now shared birthdays of sorts. It seems almost irrational that I felt such strong emotion for this girl I’d only met once, but the relief was palpable. I even took the article to my mother and proclaimed, 'She’s still alive! She got some lungs!'

On and off I would see Carly in the paper. It was always something to do with CF. Raising awareness is important, and an attractive (dare I say hot?) survivor with talent and a great personality is public relations gold.

****

At the beginning of 2004, a senior academic who thought I had actual talent gave me money to co-ordinate and lecture a course at university. American Social History. As a student of diplomatic history and foreign policy, the course was not my primary interest, but as a poor graduate student I wasn’t going to refuse the money or the opportunity to bulk up my resume with teaching experience.

While wading through the forests of paper the bureaucracy threw at me in preparation for the semester, I came across the class list and threw it aside. Just under one hundred students were on the list. I wasn’t initially interested in who they were, oddly enough. Big Important Lecturer had lectures to prepare. Apparently. When I finally got around to compiling the Spreadsheets of Doom (a.k.a. 'the way we lecturers let the university know if students have passed or failed'), there was a name from the class list that jumped out at me.

Carly-Jay Metcalfe.

And the rest is history.

Carls is now my flatmate ('fratmate'), one of my dearest friends in the world. She says she vaguely remembers me from that time in the hospital. Or maybe she’s just being polite. It doesn’t really matter. What matters is the here and now.

18.10.09

There is a growth in my throat. I do not know how long it has been there. The anaesthetists made no note of it when I had my last surgery in May, so it must not have been there at that time. When I had a broncosopy a couple of weeks ago, my doctors would have been concentrating on other things, so they missed it, through no fault of their own.

I am angry at myself. I've had an aggravated throat on and off for at least a month. I have had trouble swallowing food. The lump is slightly bigger than the size of a pea which means it has grown, and is growing, aggressively.

I am angry at myself. I'm supposed to know my body; I should know if there is something amiss, be it an ache, a strange bruise or a snotty nose. These are all things I would normally have investigated, but it seems I've missed this one and it could be big.

A sore throat is such an ambiguous ache. Either the crisps I'd eaten had gone down the wrong way and scratched my throat or it was sore because of a post-nasal drip. Only now do I realise that my sense of taste never returned as sharply as it should have after my sinus surgery.

Today is my sister's birthday and I am too tired from the anti-virals I started on Friday to go and see her. How I love her.

Tomorrow I'll see my ENT surgeon and I know that he will want to cut. He will want to cut it out. The uncertainty of what the growth could be has spooked me, and no, I'll not stop worrying until I get a diagnosis.

I'll not even bother to try.

south

Note to doctors:

When referring to my vagina and vulva, please refrain from saying 'down below'.

It makes me feel like I'm in the engine room of the Titanic shovelling coal, and my vagina resents you. It resents your Dickensian modesty and inability to look at it's host (that's me) in the eye when talking about 'down below'.

I do not have a 'down below'. I have female sexual organs with substantiated names like vagina, vulva, labia and clitoris.

That is all.

scrapings

Today I had my insides scraped with a brush and now I feel empty.

The dog trap of a speculum was eased into my vagina, wound tight to open my cervix and keep the widening secure. Cotton balls soaked in vinegar were packed into my vagina and cervix to see if there was any dysplasia, or 'changes'. My cervix was brushed and scraped with 'brooms', then sticks of silver nitrate were inserted to stopper the bleeding. My doctor said the application of the silver nitrate onto skin is just like a cigarette burn. It cauterises and seals.

The dog trap that had been inside me for thirty minutes was pulled out. It was a strange feeling of sweet agony.

My vulva was then painted with vinegar. Obvious (yet hopefully low grade) changes were detected which demanded a punch biopsy where a 3mm section of tissue is taken - just like you would punch a hole into paper. It was a nick. I was offered local anaesthetic, but having local pumped into my vulva stings like a bitch and either way, it's going to bite. Silver nitrate was used again and this shot up the right side of my vagina, hurting me more than the actual biopsy.

So I bleed and I wait. There is no sweet agony in this.

me

dumbest girl in the world/smartest girl in the world

So you probably think I know it all by now. Well, I don't. I don't know it all and have never purported to know everything.

No day is like any other.

I do not know what I'll be doing or where I will be next month.

Each year arrives with more uncertainty than what came before. The learning curve never ends and it is often steep. There are times where life would be all the better without it, but I am content and grateful to still be learning.

Learning means you're alive. Some lessons are tough; others simple - welcome even. Old and familiar.

Old and familiar is good.

shameless self promotion

I'm happy to report that I have made my debut on Jonathan Crossfield's 'Top 50 Australian Blogs for Writer's', at number 110. Yes, you read right - 'top 50' - however Jonathan also has a 'runners up' top 50 and I made it onto that. Which is marvellous due to it being my debut. You can read about it here: http://www.jonathancrossfield.com/blog/top-50-aussie-writer-blogs.html

Thank you to everyone who browses, reads and comments on 'chasing away salt water'. It'll be interesting to see how it rates in the next one (that would be December). For now, enjoy the full moon. My love for it swells when it wanes and is the colour of a blood orange.

Melinda Bennett

24.9.93

I crave words, yet they won't come. I call on my arsenal, but this time is different. It's as though I have never written a word before, so I’ll say it out loud instead.

She was my girl. We wreaked havoc on the Royal Children’s Hospital - on several wards - and every time we provoked trouble and were given a stern talking to from the Nazi-Bitch of a charge nurse - it was so worth it. Nazi-Bitch had her favourites and I was one. Melinda wasn’t.

Melinda’s mother had a neatly manicured bleached blonde mullet, which I believe impeded her wisdom, leading her to make poor decisions. Or maybe she was just selfish. One of our most gentle and polite doctors who had looked after us since we were toddlers, said the peroxide had penetrated her brain. I thought she was selfish. She wore too much make up and it was all ‘let’s slut it up instead of visiting my two daughters in hospital.’ She smoked, too. Bang Bang.

Melinda went to Keebra Park State High School on the Gold Coast, but because she spent most of her time in hospital, she didn’t care much for school.

I'm writing this as I'm speaking it (think stream of consciousness) so please forgive the lack of formatting and consistency.

We would steal chux cloths from the kitchen, tear them into strips and tie our hair up in rags so we'd have curly hair the next morning. When the physios came to wake us up, we’d freak the fuck out of them because there’d be straggly pieces of chux in our hair. Melinda and I would take them out after physio and I’d have curly hair. For about an hour. Then it’d wither and sink to my waist. Melinda didn’t fare much better because her hair was so thin.

We liked to slather our faces in green clay masques, style our hair into pigtails and take disgusting photos of each other groping our crotches while wearing our pyjamas (see below).









When we were in hospital together, we were thick as thieves. She’d watch while I accessed my port-a-cath and I’d hold her hand while she had hers accessed by a nurse in the treatment room. We’d listen to Guns N’ Roses, Metallica, Pantera and Sepultura - which ironically translates to 'grave' or 'tomb' in Portugese - and it came as no surprise to us that no one understood the all encompassing obsession we had for our music.

Melinda and I would spirit ourselves into the tiny utilities room where we’d choreograph dances to our favourite Gunners songs, which bordered on pornographic. We'd give it a good nudge, but it would always end up with Melinda and I in coughing fits and nurses finding us on the floor with Melinda cyanotic and in desperate need of oxygen.

We soon learnt our lesson and would retreat to the abandoned McConnel Ward beneath Adelaide Billing armed with nasal prongs, a stereo, cassettes, cd's and food. Melinda and I choreographed songs such as ‘Pour Some Sugar On Me’ and 'Leave Your Hat On', where we performed the full monty long before the term had been injected into our vernacular. Me, being the much healthier of the two, would often leave Melinda sitting on the floor at the helm of the music while I’d dance for her, making her laugh until she turned blue. I’d jump off chairs and hop on old hospital beds, thrusting my hips until the bed all but broke underneath me. I’d climb old metal cots and use them like I was a caged dancer. I.V poles were used for the sole purposes of pole dancing and ‘roller-pole’, where once you built up some serious speed, you’d squat and try to steer, much like a roller derby girl.

Because we were doing our stuff in an abandoned ward, we had plenty of room to move and we knew the ward back to front because McConnel and Adelaide Billing had identical layouts.

We’d go-go dance on the kitchen’s stainless steel benches, spraying water all around the place a la Coyote Ugly (we were so evolved), cutting loose with some typical girlie moves. As an unspoken rule, we moved our bodies with our thoughts fuelled with sex where we had an audience and we were the fucking hottest girls in the world.

The morning after such a dance off, we’d wake up with sore necks from head banging. No one knew about it except for us. Once we sealed up those heavy doors on McConnel Ward, as well as the concrete and terrazzo between floors, no one was ever going to hear Axl Rose, Slash, Marvin Gaye, Joe Cocker, James Hetfield, Nikki fuckin' Sixx, Bret Michaels, Joey Ramone, Mick Jagger, Steppenwolf, Led Zep, Bon Jovi, James Brown, Iggy Pop, Jim Morrison, Cream, The Commodores, Boston, Rose Tattoo, Alice Cooper, Aerosmith and Whitesnake, and sure as hell, no one was ever going to see us dancing like we were asking for it - that was just for us.

Melinda knew I was going to study acting, but she said if acting didn't work out, that I should be a stripper. Such wisdom; such vision.



*

There was a C.F kid called Paul Greenfield. He was the naughtiest, most disgusting child I have ever met. He would strip off and run around the ward while the nurses weren’t looking and shove his cock in all the girls faces. He’d piss on the floor and called everyone a fucking cunt.

On a night after Melinda and I had had enough of having his tiny, insignificant cock waved in our faces, we happened upon some normal saline, syringes and some Ceftazadime – an anti-biotic that smells like cat’s piss. I siphoned some Ceftaz from my I.V infusion; we mixed the two in a syringe, sidled up to Paul’s bed and started moaning, ‘Oh, Paul, oh , oh, Paul’ for a couple of minutes in between fits of laughter. We then slowly emptied the contents of the syringe on his insignificant cock. When Beelzebub woke in the morning, he thought he had either pissed himself or had a wet dream.

Of course, Melinda and I had risen earlier and started saying loudly,
‘Oh my god, what is that smell? Has someone pissed themselves?’
Paul woke with a start, looked down at his pants and a look of horror registered on his he-devil face.

By this stage, the other kids could smell the Ceftaz, and Melinda said, ‘It’s coming from over there,’ and pointed to the corner where Paul's bed was.
‘Did ya have a wet dream, Paul?’ said Melinda.
‘Nup – he’s pissed himself!’ I shouted.
All he could muster was a quiet ‘fuck off.’

*

Our song was ‘November Rain’, and when she met the love of her life, Wayne, it became their song and I happily passed on the torch. For Melinda and I, it would always be ‘our’ song, but now she had someone else to share it with.

This is where the most heartbreaking part of Melinda’s journey begins and ends.

Remembering Melinda is something I do not do easily. There is a lump that rises in my throat, lodging like a stone. I choke. Out of all of my friends who are dead, Ineka and Melinda hit me the hardest, and they have been the ones that have stayed with me; haunted me and will never leave. I've never loved or mourned a person like I have Melinda and for that, I blame adolescence - such a tender time for any boy or girl.

In 1992, Melinda met a long, floppy haired boy called Wayne. Everyone was suspicious of his intentions, what with his penchant for heavy metal and shirts that had offensive logos. He was also a boy of few words, but it wasn't long before all the grown ups realised that this guy loved Melinda and was there for her and with her, come what may. Wayne was one of the most beautiful and devoted man-children I have ever met. He would always be at the hospital spending time with Melinda, be it taking her out, doing her physio, helping with her anti-biotic infusions or just being there.



In 1993, Melinda and I were both in the throes of first love. I was in crazy love with Andrew and he and Melinda became friends. Even though Andrew could only visit at certain times because of school, he'd spend hours with me and with Melinda and Wayne. Melinda and I were going to have a double wedding on the beach. We were in love and it was wild. Andrew and I broke up, yet Wayne stayed with Melinda and it became clear - to me at least - that they were soul mates. About a week before Melinda died, Wayne proposed.

By this stage, Melinda and I had different strains of pseudomonas, so we had to be separated. I had MRSA and Melinda had Cepacia, but when she was dying, I would sneak into her room. Fuck the consequences - I didn't care if I ended up with Cepacia. I'd massage her matchstick legs and back; feeling the bones, her spine so curved from the pressure on her lungs. Her shoulders curled over like a snail's shell, yet they sat up high so she could gasp for breath. We’d talk, I’d massage her feet and ask if I could do anything. She would have been in an incredible amount of pain, so I rubbed her back when she coughed and re-arranged her pillows so she could soften her spine a little.

I remember one day being in her room when we both heard the C.F liaison nurse in the corridor. We freaked. We also laughed and Melinda started coughing. The C.F liaison would’ve been furious if she’d found me, so I made a dash for Melinda's bathroom and hid for five or so minutes. I just wanted her to fuck off and leave Melinda alone.

I found out in a way of her death that I cannot, even after sixteen years, write or talk about. One day.

The funeral was horrendous. That day, I saw one of the saddest things I will ever see. 'November Rain' began to play and my head dropped to my chest and I thought I was going to throw up. I knew it was going to be played at Melinda's funeral. The mourners gathered outside in the dampness of the day, and just when you think the song has ended and Slash rips out his final solo, Wayne ran. He ran and ran and ran and didn't stop running. He cut a lonely and devastated figure as he sprinted through the crematorium in the rain. I never did find out where he ended up.

I saw Wayne about a year after Melinda died. He came up to the hospital to visit me and I loved seeing him. He looked happy and he had a girlfriend. If only I could remember his surname.

About four years ago, I had night terrors for a few months and some involved Melinda. For a time, I could not stop thinking and crying about her. For years, I hadn't been able to listen to 'November Rain'. If it was on the radio, I'd switch stations. Then, strangely, I began to torture myself. I'd play the song and the video over and over and over. I would cry uncontrollably - it was like Melinda had died again. This went on for a few months and suddenly I was okay. I didn't have to listen to it anymore, and while I'm not sure if the compulsion to listen and watch was born of the night terrors, I am most pleased that I can now listen and watch when I want to, not because I have to.

'Nothing lasts forever, even cold November rain.'

The following piece of writing is from my verse novel in progress, 'Seven Layers of a Wound'


breather

I stayed away from school
finding myself in an empty place.
Melinda died and all I could think on the way to her funeral was,
‘I wish he was here to hold my hand, and for me to hold his.’
She was his friend, too.

I wish he had seen Wayne run away. He just ran and ran and ran when
everyone had gathered outside in the rain.
We stood there, trying to listen to 'November Rain'
but all we did was look at her coffin.
I thought, surely she can't be in there.
She wouldn't want to be in there.
I want to be in there with her.

*

That wound of him never healed,
for time doesn’t heal wounds like that when they’re
raw and bloody and have left a cleave in your chest.
Grief dulled to a blunt unfeeling and a wish we had fucked.

I dissolved until I was a shell of a girl where no one understood me.
I hid myself away.

He changed me; made me bleed.

Jesus might forgive you, but there is no Jesus in me so there cannot be one to forgive you

waiting

It’s a strange thing, waiting.

I’ve waited in a lot of places – in clinics, waiting for doctors, waiting to get better, waiting to get worse, waiting for friends to die, waiting for friends' second chances, waiting for medication, waiting for surgery, waiting to die, waiting to live.

As well worn as it sounds, you teeter on the brink both before and after transplant. Nothing is ever a certainty.

Here are some thoughts that can rattle my head any day:

I’m spiking a temp – am I septic?
I have a strange ache – is it cancer? (current rattle)
I’ve woken up with a sore throat – what if it’s a virus? What if I have to have methyl-prednisone? Those massive doses of steroids that make your head and fuck your eyesight so badly that you cannot read? Methyl-pred that blows you up like a puffer fish; methyl-pred that has me looking akin to a blonde Bert Newton?
I'm belly aching - is this just a slinky* or a bowel obstruction?

So many questions where there are never going to be any answers. Not simple ones, anyway.

But the question, the one question I have always asked – can I write the ending?

Sometimes it seems like my life is being constantly interrupted by my dis-ease, not dissimilar to a gated community you can never leave. An unpleasant Pleasantville. It grabs at me like a devil’s tourniquet and I feel stuck - with everything. Your friend’s lives go on, yet you’re seemingly mired in one place physically and another mentally. You don’t and can't go out as much as your friends do. I should have been dancing, drinking, kissing girls and fucking boys, falling over in sky-scraper heels and bruising my knees a la gang bang on bitumen; getting picked up by men and women and girls and boys, experimenting with drugs (non-prescription) and watching the sun rise while still drinking vodka. With no clothes on.

As it stands again, it's all about me. It is selfish and self-indulgent and while I know this is a memoir, I lament words like 'I' and 'me'.

When you are waiting, you're a ball and chain; lugging around the heaviness of a dis-ease, burdening your family, your friends and other people on the periphery. I am a scourge. But then someone - a stranger or a close friend - tells you that you are loved, wanted and valued, and if you give up, they’re not going to be able to pick up the pieces. They are the ones who are abandoned.

*

When you’re dying, people look at you differently.

Some look at you as if you’re going to drop dead sans warning, but with C.F there is usually time from going from the dying or palliative care stage , or what I call 'from womb to tomb'. At least that's what I thought until my friend Nicky Campbell died. We were both on the transplant list at the same time, and she was doing well - still managing to study at university and planning her wedding. What happened next was unexpected and swift. Nicky got a regular infection, which raced into double pneumonia. Within a few days she was on life support - something unheard of with C.F's. I remember the morning when my Dad arrived on the ward. He only ever visited in the morning if he was in South Brisbane and near the Mater. Dad was a night visitor. He walked into my single room bleary eyed and I was most pleased to see him. He sat on my bed and told me that Nicky had been placed on life support, but it had been pulled. She was dead.

I howled; a guttural cry poured out of me, staining the air. It was the kind of cry you dig deep for, but it broke out of me so freely. Nurses gathered outside my room, unsure of what was going on. Dad was close to Nicky's father, Colin, as they had both been active in the C.F community. Dad rocked me in his arms, holding me like I was in a trammel so tight I never did know how the wailing kept pulling on my lungs and voice like the malignant suck of undertow. If Nicky had died, then surely I was next. I was far sicker than her and could not understand why she was dead and I wasn't.

Just after 6am, there I was being cradled by my father, while another father was cradling his daughter, too, except she was dead.

As a child and an adolescent, most of my friends' deaths were almost identical. Some kids could hold on for weeks, while for others, all it took was a few days. Some had liver failure, others had fatal asthma attacks, so while each was different, for my friends and I, the end result was the same. Our friend's were dead and we were still breathing.

We would talk it out. We would dance it out. We'd crank Metallica and head bang it out. We would scream it out in the park and into our pillows. We'd bash the shit out of tennis balls and jump on out beds in protest, yet other times we were overwrought by a binding sense of guilt, no one could speak.

At night when we were left with nothing but the darkness, we were too frightened to close our eyes. Whispers and giggles echoed around the cubicle and we'd crawl into each other's beds. Fuck the consequences. Fuck everything. Fuck the nurses who could not understand why we were afraid of the mournful blackness. Eventually, someone would pipe up and say, 'what the fuck happened?' and 'who do you reckon's next?'.

Cystic Fibrosis is an insidious disease. It is cruel. It is slow. It is not swift and it is crushing.

I expect death, yet I'll not wait for it.


* slinky - pieces of shit I can feel in my stomach with my hands. I call them slinky's because they are cylindrical in shape and I can feel them 'slink' down my bowel until, well, you know, they're eliminated.