Sunday, February 22, 2009

Hermes 3000, oh my!

My darling Dan presented me with this piece of finery last week. A Hermes 3000 in perfect condition, with original lid, books and dust brush. It is a joy to write with, and like my Hermes 2000, will not just be an ornament. It's a fully functioning writing tool. Hose. Me. Down.

Kerouac's Scroll

Re-surfacing from an involuntary reading hiatus always cheers me. Reading time is something I value, as much as my writing, for to be a writer, you need to be a reader. A certain academic coughed up that chestnut years ago, and even though I'm not a fan of his writing, I believe in the dictum that to be a writer, you need to read - and read lots.

The problem I have is that I don't know which book to attack. I have three skyscrapers next to my bed and the pile on my bedside table. I now need to buy a low book shelf that can double as a bedside table to literally support my habit. I also really need to look at the benefits of selling my body to pay for my compulsion. Change for a dollar?

This afternoon I started Sonya Hartnett's 'Butterfly'. By gum, she deserved that Astrid Lindgren Memorial Award. I'm also having a Beat writer love in with Charles Bukowski, Ken Kesey, Jack Kerouac and William Burroughs. There's something raw and sparse about these guys, in spite of how complex they were. I have the original scroll of 'On the Road' and after welcoming another typewriter into my collection last weekend from Dan (will post a photo), that Kerouac typed his manuscript on a single roll of paper in three weeks - a continuous, one hundred twenty-foot scroll of tracing paper sheets that he cut to size and taped together. The roll was typed single-spaced, without margins or paragraph breaks. Crazy motherfucker = motherfucking legend. The three weeks it took Mr. Kerouac to write 'On the Road' has been passionately contested and always will be, but care? I do not. Bring on the Benzedrine.

Check the photographs of the scroll, currently living at the New York Public Library and Kerouac's Underwood typewriter. I'm deliriously happy to report that I will get to see the scroll on my pilgrimage back through the States nexy year, post UK. I will salivate over the glass cabinet which some poor library person will have to deal with. Oh, well. Isn't that what those white cotton gloves are for?





Sunday, February 8, 2009

I fucked up my stat counter

Yes, I did. About a month ago I did something really n00b-ish and my stat counter has re-set itself. From memory it was over 2300. Fucking technology. I blame it on Mickey Rourke.

You might need rescuing, but I don't

What happens when your life comes to an end? I'm not talking about death and I'm not talking about a 'part' of life. I'm talking about when something inside you dies; something within you. A friend has been living through this mess for a couple of years and has asked so many questions. Not just of herself, but of others.

When you're ready; when you eventually rise where you can see your life again, how do you know what to salvage and what to throw away? Is it all just varying degrees of flotsam where you grab onto what rises to the surface first? Too many questions. There will be parts you cannot remember, then later find in a box filled with notes and other paraphernalia of what your life was like before.

I still have the flower I plucked the morning Michelle died on the eleventh day of February in 1996. The following morning my grandmother died in the same hospital on another floor. I remember being in limbo that morning of the eleventh. I was racing between floors, but spent the bulk of my time in ICU with Michelle. That week was fucked. Two deaths, a day of reprieve, then two funerals.

I was slightly catatonic when I plucked a flower out of the garden as I limped out of the Mater around 5.30am. I still have it in a plastic bag inside a pencil case I stole from the Spring Hill markets when I was fourteen. It's the only thing I've ever stolen - from a shop, anyway.

In a way I've been a thief more times than most. I've stolen away with a new life, I've stolen love, time and fucked over death and I've made away with the spoils. Everyone has been a thief. Think back to what you last stole away with.

Which brings me to larceny.

Internal unrest can strike when you apportion your life to the public where intimate moments - through your choosing or not - become urban fodder. I can talk and write freely about having my cunt peeled like a grape, but there are other things that I will not share. It's a delicate balance when you put yourself on a platform and talk about bodily functions and the physical manifestations of a dis-ease but when other things happen, I choose not to share. With anyone. Even my closest friends. If I am sick in hospital I will not tell my friends because I have this thing. A thing you will never know about.

Along with presenting your health issues to the world, comes the whole 'I am not my illness' dictum, which has become more of a proverb. Illness has been a massive part of my life. No wait - illness has tried to interrupt what I do, but it is not what defines me. If someone believes that I am my dis-ease, they are to a point, correct. I knew from a very young age that to most people I'll always be 'Carly who has C.F', 'Carly who had the transplant' or 'Carly who [insert illness here]'. If I won an Academy Award, I'd be 'Carly who has C.F who won the Oscar'. I'll never be fine with that. It will always sit uncomfortably in my belly, but it's there.

I often wonder how my doctors and other medical practitioners see not just me, but other patients. Sometimes the illness is all they see. When I'm in hospital, I surround myself with the things that give me sustenance and purpose. Some people have photos on their bedside table, others have balloons and cards. I have books, music and all manner of writing paraphernalia spread across the room. And real coffee. Taking objects into hospital with me is often just as important as taking clothes. I do it so that when people come to see me, they're not just seeing a body in a bed that has nothing to say or nothing to give.

I have to be more than just a physical presence; I want to be something tangible. I don't do photos, flowers or balloons or 'Get Well Soon' cards. I already know that people's thoughts are with me so I find hospital-centric stuff like that ... insulting. I'm sorry, but I do. I know people are well meaning creatures but I don't want to be reminded (again) that I'm sick because I have enough reminders with blood tests, lung function, DVT's, stupid three and seven minute walks, having to talk to social workers, juggling meds with the pharmacist and possibly what I detest the most - engaging in banter with physios.

Physios are some of the grooviest people I've known in this life, but I find it strangely abhorrent when asked, 'so are you productive?' or 'what have you coughed up today?', 'what colour/texture/shape was it?' It reminds me of when I had C.F.

I still have C.F, but it reminds of my pre-transplant days when the most stimulating conversation I would have on any given day would go something like this:

[GP - groovy physio, CJ - me]

GP - 'What colour have you been coughing up?'
CJ - 'Well, I wouldn't say it's a verdant green. More like avocado. And I coughed this plug up this morning which was kind of ...'
GP - 'Dark green?'
CJ - 'No. It was brown. Shit brown.'
GP - 'Have you coughed up any blood?'
CJ - 'Why, yes I have.'
GP - 'What colour was it?'
CJ - 'Do you want a fucking colour atlas?'
GP - 'What do you mean?'
CJ - 'My Dad's a painting contractor, so here are some pretty Dulux names for you.'
GP - 'Right ...'
CJ - 'The green stuff is somewhere between 'sea kelp' and 'hookers green'; old blood is just like 'ox blood'. Then again, 'red pebbles' comes close, while the half a cup of fresh blood I coughed up last night was just like 'scarlet ribbons'. Anything else?'
GP - 'Sure! Was it thick?'
CJ - 'Of course it was fucking thick. The shit I'm bringing up is like slugs. Or clots. No wait, they're like clotty slugs - see?'

I'd cough up a slug and turn the cup upside down to demonstrate that it wasn't going anywhere because it was like chewing gum. Sputum also smells. After my transplant, I couldn't cope with other people coughing even though I had been doing it in grand style for twenty-one years. If I cough anything up now, I feel disgusted with myself as a sex worker would who, after years in the trade, can no longer have sex, is celibate and will never have sex again.

Sex is good, though. Coughing up phlegm? Not so much.

Saturday, February 7, 2009

a mood that passed through me ...

I remember it well
the first time that I saw
your head around the door
'cause mine stopped working.

I remember it well
there was wet in your hair,
I was stood in stare
and time stopped moving.

I want you here tonight, I want you here,
'cause I can't believe what I found
I want you here tonight, want you here
nothing is taking me down, down, down ...

I remember it well
taxied out of a storm
to watch you perform
and my ships were sailing.

I remember it well
I was stood in your line
and your mouth, your mouth, your mind ...

I want you here tonight, I want you here
'cause I can't believe what I found.
I want you here tonight, want you here
nothing is taking me down, down, down ...

Except you my love.
Except you my love ...

Monday, February 2, 2009

I am invincible, so much so, I did a little mulching with an interpretative dance chaser ...

I cannot help but express my surprise that I haven't yet been snapped up by ASIO to be a super spy. I have this thing where I can cut away faster than Keanu Reeves in The Matrix, surfacing with barely a bruise. Then there's that other thing - my theory that I'm impossible to kill (which may irk some people).

I came away from transplant clinic today with not so much as a graze. Nothing grew from Friday's cultures, my lung function was kick arse and my bloods were perfect. Kaching! *pops a beer* Now I feel as though Mickey Rourke and I are even closer than we were in the dream I had last night. No wait, that can't be possible, because I was shagging Hatchet Face like a smack addict who's in withdrawal. Just to let you know that it was a dream, not a night terror as several people had anticipated. I looked at some Mickey porn last night from 'Angel Heart' and the abomination that is 'Wild Orchid', so I was set.

So all I have to sort out is my snot situation so I can get over to London in March-April, which means surgery. Which is fine because I don't have a deviated septum and don't have to have splints shoved up my nose, which from what I've heard is like having paddle pop sticks rubbing on your brain. In English? The bone going down the middle of my button nose is straight, so even though it's touted as being 'major sinus surgery', it's a relatively pain free procedure.

I had it done a few years ago after a year of being on morphine for migraines. It was so acute I had my own supply of morphine at home, so when I felt a migraine coming on, I'd snap an ampoule (or two) and inject the good stuff into my thigh. No biggie - just intramuscular. The addiction? That became a biggie, but it's now a rarity where I'll say yes to morphine if I need it, because it makes me itch and keeps me alert. The pain relief effect works well - not as well as hospital grade Ketamine - but I seriously hate the stuff.

The sinus disease that showed up in my MRI looked like 'chewing gum' (that's verbatim from one of my docs), and now it's chockas again. Looks like I just need to make it a three yearly thing. After the surgery, I felt like I could run around the block, but chose not to because I didn't want to chance hemorrhaging halfway down Rode Road. That wouldn't be sexy at all. My parents couldn't quite believe I had had the surgery because I looked and felt so well. Okay, so I didn't look great with wads of gauze hanging out of my nose reminiscent of tampons, but if you took that away, I looked damn fine. Rip those wads of gauze out and I was bringing sexy back. Or something.

So yes, I did a little celebratory dance today, and some mulching. It was pretty intense. On a serious note, I saw one of my C.F mates who has been transplanted for over eleven years and he is having a kidney transplant on Friday. No, he hasn't tracked a donor match to assassinate for a kidney because his beautiful Ma is donating one of hers. Re. the assassinating people for organs, I'm serious - people actually think that is what happens when organs are needed - I shit you not. S deserves the best possible result, not just because he is a great guy and such a fighter, but even more so because he is a newly-ish wed and deserves to share a fulfilling life with K. I've know him since I was a whipper snapperess, so I'll be thinking of him on Friday and over the coming weeks. S is going to be fine, because that's the way the feather will fall. He's a fucking superstar.

Sunday, February 1, 2009

Dodging bullets

It's ironic how one day you are elated in the knowledge that you have dodged a bullet in the form and tough consistency of cancer, then the next, you're rushed to hospital after a rapid onset of illness and you find yourself in the ER, scared as all fuck.

Well that's what happened Friday. I had been loving it up at the coast and I had been feeling a little average, but upon waking on Friday, I was feeling a little like death. I tried to keep brekky down (we were out with some friends) and considering I can't vomit (google 'fundoplication'), I managed a little watery chunder back at the unit. It's weird. I get the frothing, the motion, and I vomit. Except nothing comes up. A projectile for me is a little water, which is great when you've been out on the juice and you're in a cab and you're not feeling so well. Having said that, the last time I was that incapacitated was October at the C.F Luncheon with my precious man, Dan who is probably reading this (hello, Dantastic).

But I digress, which you should be used to by now. I get to Emergency and I tell the nurses at the triage desk who I am and everyone sort of drops everything and before I can say 'resus', I'm in, well, resus. One of the poor transplant residents couldn't cannulate me and she was so lovely. I was giving her a major heads up while not telling her that I could still cannulate myself. I just couldn't do it. She was too sweet. I had some other tests, was given the the once over (which took around three hours, which I thought was a brilliant turnaround). I also had the pleasure of aesthetically pleasing medical professionals.

So tomorrow, I'll head to transplant clinic where they will tell me that I don't have a respiratory virus like the one I had in May which Rex* couldn't cope with. And I'll digress again. I remember how Rex came up to see me and he couldn't believe how sick I was. But I wasn't that sick, and I thought, 'fuck, what would he be like if the chips were really down?'. Dantastic came to see me several times. Rex came to see me once. He did pick me up for a day out which was a total disaster, but every visit and every phone call with Dan made me laugh and wonder about Rex's inability to cope with minor health infractions.

It made me think about his coping mechanisms - what coping mechanisms? One would say that if I had to choose a book title which reflected his life, it would be A.B Facey's 'A Fortunate Life'. Some people have incredibly sheltered lives. Which is great. I wish them well and hope they never steer too far away from what they know. I'm glad I've never lead a sheltered existence and feel blessed that I've been through what I've been through and seen what I've seen. Again, I wish those who have lived lives untouched by tragedy or hardship, luck. I really do.

Tomorrow will be fine. I feel better than I did on Friday and the days preceding that. Then again, I went to see 'The Wrestler' today and I want to shag Mickey Rourke's brains out, despite him having a face like a car crash. Unsheltered life? Tick. Balls? Tick. Guns 'n' Roses lover? Tick. A high tolerance for pain? Tick. Awesome body for an eighty year old? Tick. Sexy, hoarse voice? Tick.

Oh, Mickey, let's spend an endless winter in your trailer, basking in the heat of your peroxided hair and man muscle. Let's dodge bullets together and you can use my body like a bandage. And I'll use yours like a wound.

*Retarded EX