Tag: self-preservation

The power of choice

I made a big decision yesterday. I decided that I no longer need my opiate antagonist therapy. I had planned to stop on my birthday, which just happens to fall on New Year’s Eve, but I’ve been feeling so happy and settled that I knew I could do it. And so I did. The ‘high’ from not having to take the bitter pills I’ve been placing under my tongue for two years was unexpectedly immense. I felt as though I could scale a mountain. I danced and howled at the fireworks that are barnstorming the sky every night before Christmas.

But then the night’s hands stretched towards midnight, and I toddled off to bed where the inevitable withdrawal symptoms began to kick in. I was hot, then freezing cold. I had restless legs and my arms were flailing uncontrollably, so I clamped them shut between my thighs and dealt with it. Because that’s what you do when you make a choice.

I woke up early this morning feeling like I could swoop into the sky with those long gone fireworks, but now I’m a little tired simply because I’m functioning on very little sleep. I don’t know how long these side effects will last – maybe a few days or longer – but they beat being reliant on any substance EVERY FUCKING TIME. I ate a hearty breakfast, downed a legal addictive stimulant coffee and with my full belly and happy heart, I thought I would sleep, but I’m feeling so free and alert that I had to write.

The last two years I’ve been on Buprenorphine have been some of the most memorable and active, simply because I wasn’t wasting my life getting high and sleeping my life away. I got shit done – lots of it – and last year was an incredible year that presented me with some life changing opportunities. This year has been a little more sedate, but just as fulfilling, if not more.

A couple of weeks ago, I had my last appointment with my addiction specialist and we decided that I would stop taking the ‘bupe’ on my birthday so I could start the New Year clean and fresh as a daisy. I won’t go into the specifics of my final appointment, but it was rich with poignancy. I will miss my doctor’s wisdom and his ability to be transparent with the realities about my state of addiction. He has been such a source of encouragement, and when I last saw him, we hugged and exchanged kind words. He also gave me a beautiful healing stone which I’ve added to my mineral collection (or crystals, if you want to call them that).

After ruminating about the supportive relationship with my addiction specialist, I realised that I had met one of the finest doctors who had ever treated me, and I’ve met hundreds – maybe thousands – of doctors. I’ve met doctors who shouldn’t be doctors, but this man genuinely knows how to care for his patients. He knows that their – our – lives are in his hands. He was one of the very few people I trusted to show my TEDx talk to prior to speaking on the day, and he had nothing but lashings of encouragement and praise. He’s the kind of doctor and human being you want as your doctor. He was in my corner from the start and I couldn’t have done it without him. Behold the healing stone …

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Peace. Joy. Liberation. THAT is how I am feeling today, and how I will continue to feel even through the flailing limbs and mad body temperature fluctuations. I will hold that feeling of pride close to me and that is how I will get through, because there is no other way.

I’m excited about a whole gamut of stuff right now, but I’m mostly excited that I can turn that bloody alarm off my phone that used to remind me to ‘dose’ at four-thirty every afternoon. No more alarms. No more bitter pills. No more lining up at the junkie counter at the chemist to be ‘dosed’.

I get to enjoy Christmas with my loved ones with no attachments, and while last year may be tough to beat (I had my sister back, and my parents, her and I danced the night away), I’m not out to break records. I’m here to live, love, be loved and give. It really is that simple. Yes, there have been deep feelings of shame I can attribute to my drug use (and lining up at the junkie counter), but like the scars on my body that whisper to me that I am a warrior, I’m more than happy to share my stories of how I have seemingly conquered my addiction to narcotics.

Now this may or may not interest you, but I’ve been reading a lot of peer reviewed papers and first hand experiences of how psychedelics are used in addiction therapy and to heighten spirituality with the dying. I’m more invested in how psychedelics are used with the dying, and while I wouldn’t do it myself due to the risks to cognitive function and the potential psychiatric issues, I’d probably give it a go if I was at the end of my life. While the potential for dependency is very low, what a ride it would be. Now have a look at this diagram:

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I don’t do alcohol, nicotine and my intake of coffee these days is practically non-existent in comparison to what I used to consume. Prior to transplant, apart from morphine, I would continuously suck on nitrous oxide (Entonox) when physiotherapy became too painful. It helped, but it can cause bleeding, so I was closely monitored and as such never had physio again due to uncontrollable pain. When I was dying, all that mattered was that I was comfortable from both a physical and spiritual standpoint.

Now take a look at where Psilocybin (‘magic mushrooms’), LSD and Mescaline are on the chart. Very low in dependency. It never seemed to hurt Jack Kerouac or Sir Ginsberg and their prolific writing. Until it did. A slew of writers ‘graduated’ to speed, benzodiazepines – and the rest – which inevitably lead to this: ‘Kerouac took so much amphetamine when he first discovered the inhaler high that he lost most of his hair and his legs swelled up with thrombophlebitis.’ Not sexy at all. So while it aided their art for a while, it swallowed them whole and Kerouac was dead at the age of 47. I am eight years away from 47 and do not want to die, so to think I was addicted to narcotics like morphine and pethidine horrifies me, because after heroin, they’re at the top of the list with both dependence and morbidity. Pentobarbital (often marketed as Nembutal) is right up there, too. Nembutal is the choice drug for euthanasia, and cocaine is not far behind.

I’ve spoken at length with friends who have tried all manner of substances over the years: ecstasy, methamphetamine, mescaline and LSD, heroin, morphine, cocaine, marijuana and alcohol. That’s right – alcohol is also on the list with a level of high morbidity too. Is this a cautionary tale about drugs? Perhaps.

So enough of the horror for me. Instead, I am going to try to not be horrified with how close I came to death when I was using, but will tap into the subtleties of that emotion when I need to feel proud. Did I win the fight against drugs? Did I win the fight against CF and cancer? Not quite, and for a couple of reasons. I’ve never particularly liked or understood the militarisation of illness or death, and I don’t plan on using that model for how I got through my addiction. I GOT THROUGH IT. And I got through it with support, love, the right medication, meditation, music, writing and fuck off stubbornness. I can’t say that I single handedly came through the other side without help, but I did most of the work myself because I’m not one to ‘lean in’ – I never have been.

Having an addiction specialist and a supportive family was one thing and while I only told a handful of my closest friends, they knew from day one that the only way I get through the really tough shit is on my own. I attribute that to spending so much time alone in hospital once my Mum had to leave so she could love and look after my sister and my Dad. Being alone gives you a tremendous sense of temerity and independence, as well as an imagination to rival Tolkein (although I was never going to be as crafty as he was – not even close).

I’ve never been codependent on another person, and I don’t know if that’s a good thing or not. More often than not, I’ve reasoned that it’s for the best because I’ve always wagered that I will live the rest of my life alone. Except that I’m not. I want to thank everyone for letting me just be. For still loving me. For asking how I’m going. For always asking and accepting that wherever I am, no matter what may be happening, ‘I’m fine, thank you’, even when I’m not.

Endnote: this is what I strutted – really strutted and danced – around the house to last night. Because I’m feeling good.

Trapped, or The first and last time I’ll ever write about this

There are far more certainties in the world than death and taxes. There is bad coffee, love, storms in the summer, things you cannot have, and then there’s choosing the wrong people for ourselves. In 2008 – not long after I had fought so furiously for my life and survived an eight-hour surgery where I had my vagina and rectum cut away, skin grafted and was gifted an ileostomy (poo bag) and then went into a coma doctors weren’t sure I was going to come out of – I fell in love lust at first sight. It wasn’t a whirlwind – it was a cyclone. The connection this person and I moved through was something I hadn’t experienced since my first love, and like Lantana, I let it seed and strangle me. I had never had any reason to not be free with my love. I gave it away easily – I fell hard for people.

And so, I let someone in. But this person I ‘loved’ inflicted their sense of entitlement and narcissistic tendencies on me. I lived with what I thought were their ‘quirks’, but when it came down to it, I was being emotionally abused, alienated from the people I was closest to and within the vacuum, I lost myself.

Let’s call him Grug.

At first it was exciting and intensely romantic. It was all ‘wine and dine’ and spending wildly to impress me, although he never spent it on me. Instead, Grug would spend ridiculous sums of money on his P.O.S car that he always wanted to be faster and noisier with more horsepower. He would call and say, ‘I love you. I’m going to marry you’, ‘you’re so strong and amazing.’ Grug used a litany of superlatives and ridiculously clichéd euphemisms, but I was IN. He had me. Within the first week, he wanted to buy me a diamond ring, but at a later date, he told me I’d have to ‘earn it’. What the motherfuckity fuck? I should have run far, far away. How dare anyone tell me I have to ‘earn’ something? I was out of my head – literally – with the romance of it all and so cock whipped that after a couple of weeks, I found myself staying at his house for days on end, sleeping, not getting much writing done and basically starving myself to stay as ‘perfect’ as he would keep telling me I was. On our second date when I asked about his mother, he said (verbatim), ‘She’s petite like you, blonde hair like you, although it’s a bit shorter than what my step-father and I would like it to be.’

Massive red flag, yes? No. I was naïve and thought it was sweet. Or perhaps it was the wine. I don’t usually drink and Grug said that he didn’t either, but it soon became apparent that he was using alcohol and, from what I could tell, drugs as a crutch to control his moods, and I was merely a commodity for him. It took me some time to realise that I was never in love with this person – I was totally tripped up by lust and in love with the idea of being in love and being wanted. Following my cancer surgery, I had been out on a couple of dates, but nothing had eventuated. I felt entirely unloveable. I truly believed that no one would ever want me, and even though I wasn’t ‘broken’, I thought that all men would see me this way, which is ironic, because it seems the men I typically choose chose need my help and counsel with their own issues.

I don’t hate him. I don’t hate anyone. I hate what he did to me. He changed me. Irrevocably, through his actions and dialogue, he changed the essence of who I am. Or who I was. I became an empty husk of a woman who was now certain that no one would – or could – ever love me, and I haven’t been in a long relationship since. There I said it. Fuck me into a new religion, I ACTUALLY SAID IT. As afore-mentioned, I was convinced that I was unloveable for many years, even though I know I flourish in healthy relationships. I’d had successful relationships before, but these relationships had died a natural death and there was little animosity – which is not to say I never caused harm or hurt. I hurt people I loved and still love today as my friends. And it hurts to hurt people. It is not within me to deliberately hurt people.

But this relationship – this person was different. I was spirited away from my family and my friends, and over the years I’ve taken myself back to that place and wondered where my head was at. I know that I was much like a trophy to show off on ‘special occasions’, but mostly, he just wanted me to himself and I naïvely gave it to him. Within four months, I was ground down, depressed, starving (where had my love of food gone?), fatigued and what bothered me most – lacking in compassion. This person showed little to no compassion to anyone and everyone. He had an almost physical aversion to overweight people and a self-fuelled paranoia about the police wanting to ‘get’ him. As my best friend said, he was also far too polite for his own good. He was completely unable to express any compassion or empathy for people less fortunate and this went against the grain of my very being. I could feel my own compassion being stripped away, day by day. I was paint and he was thinners.

More than once I came home to a hyperactive little boy, off his face on who knows what and listening to TOOL*. Another red flag. He only listened to metal – thrash and death metal, if you will which is fine, but that’s all he would listen to. I decided long ago that if a man can’t bring John Denver or Neil Young into his heart, there’s something wrong. He was angry – I just didn’t know it. Specifically, he was angry at his father for ‘not giving him enough’ i.e. – a race car, because he wanted to be a race care driver. Again – WHAT??

He would say implausible things, and the one that strikes me as being the most telling was that he would call me ‘perfect’. I’d giggle and tell him that no one was perfect. But everything seemed perfect, and then the inevitable happened – I got sick with a respiratory virus. It was no big deal – for me, that is. I had a PICC line in my arm (much like a central line, but in the arm or leg for IV access), and when he walked into my hospital room, where he had taken his sweet time to actually come and see me, everything changed. It was as though I had become less of a person and more of my dis-ease. He was repulsed.

I was in hospital on a reasonably toxic triumvirate of drugs, and one in particular – the anti-viral drug I was on – significantly yellowed my vision and rendered me literally speechless. It was as if I had had a stroke. I just could not get my words out, and I’d sit waiting for the words to arrive – and eventually they would – but they seemed to dissolve on my tongue. Before these side effects had kicked in, Grug and I were at post-coitus at his place, and he asked me whether I was going to become co-dependent on him. I was floored. Co-dependent how? I’ve always been fiercely independent and I said that I’d done everything by myself for nearly thirty-one years and that sure as hell wasn’t going to change. He drove me back to the hospital in silence. I went up to my room and was physically ill.

A few weeks later, we drove back from a disastrous weekend away when we saw some police on the shoulder of the highway. He proceeded to call them ‘pigs’. I have some dear friends who are cops, and I know that what they have to deal with is anything but nice. Attending suicides, fatal car crashes and delivering death messages is something only the incredibly brave can do, and so it was not ok for him to say these things. I asked him who he’d call if his home was invaded and he was assaulted, to which I received a comment along the lines of, ‘I know how to defend myself. I don’t need the fucking pigs’ (until someone breaks into your home. Oh, wait – he did karate).

Full well knowing the relationship was over, I said that if he said anything untoward about the police again, he could pull over and I would get out and walk home. We drove in silence all way back to his place where my car was, and I gave him back his keys and left. Yep – he’d given me his keys in the first week where I’d taken them with glee.

I’m writing about some emotionally tender subjects in my memoir right now, and it occurred to me long ago that there’s no expiry date for grief. It goes on. As does life. But it chips away at you – oft times insidiously – and you can never put yourself back together. All of a sudden you are in a million pieces and you cannot find the fucking glue. Sometimes you need to walk away – from your friends, your family, yourself – everything. So that’s what I did. I spent a lot of time alone, much to my friends concern. I escaped the city and went out bush to my ‘second’ family. I walked out to far away paddocks and screamed myself raw at the universe, threw rocks at the empty air and collapsed into the red dirt every day I was there. The only person who I could talk to about this heavy blanket of grief was my mother. She understood my sorrow and my anger. Others didn’t, and that’s ok.

Sometimes the grief was too much and I thought I would stop breathing. I even hoped that I would. I considered suicide, but my brain yelled at me along the lines of something like this – ‘Why would you do something so selfish and stupid over such an insignificant example of a human being after everything you’ve been through? I don’t think so.’ And so did my Mum. She gave me some tough love and I needed it. It wasn’t so much as I wanted to die – I just wanted the pain to be gone. But I also wanted something that would never come to pass. I wanted  every trace of him gone. I wanted to wipe my memory of him. I would see something that reminded me of Grug and it would catapult me back to that place of grief where it feels like you’ve had the spine ripped out of your body. You’re on the floor and you wish there was a door you could open and tumble into.

This experience – not the person – nearly broke me. And I had people who wanted to break and destroy him. One of my fathers best friends who had met Grug over a lovely lunch up the coast wasn’t so sweet on him, so when we finally talked about it over some John Denver, I told him what had really happened. He asked if there was anything I had left behind that I needed, and I made the mistake of telling this man – a tough Ukrainian Vietnam veteran – that I had left some things behind at Grug’s place. His eyes glazed over – I remember exactly where we were standing – and he said with a blank stare, ‘I’ll go and get your stuff. What’s his address?’ I knew that if he saw Grug, he’d kill him and/or beat him into a vegetative state, and I love this great man far too much for him to go to prison over blood lust. The coffee maker I had taken to his house had been a gift to my parents from some very close friends in Italy, and he posted it to me which was great. Except that it was full of mould and old coffee so I had no choice but to throw it in the bin. I noticed that he sent it express post, but through his workplace so he didn’t have to pay the postage. Grug worked for a prominent radio station of which he was and perhaps still is, creative director. I don’t know anything about him because I do not care. I don’t pretend to not care – I just don’t.

For someone who had always loved with reckless abandon, I was in a situation that had paused my life. Limbo smacked me square  in the face and for years I couldn’t go back to that place of trust because he took that away which infuriated me, leaving me with a cleft as big as the Mediterranean. How dare he strip me of one of my best affirmations – to love freely. To feel and to love and be loved.  But I can do that now, I think. Just be gentle with me, and I’m yours.

Luckily, it didn’t take long for my charter of compassion to return. But he had torn me apart and I didn’t know how to put myself back together, so I spoke to a professional and they made a default diagnosis of a ‘sociopath with Narcissistic Personality Disorder‘. For the first time, I felt that the breakdown of my relationship wasn’t my fault. I wasn’t a failure. There was a reason he treated me with such ‘love’ which so quickly turned to repulsion.

I read about NPD and wept wildly. Everything made sense. His supreme sense of entitlement, the Oedipus-like relationship with his mother, the skewed relationship with his father, the immature sibling rivalry he had with his younger brother, why his first marriage  had failed, his obsession about perfection and the most telling, the fact that he had no friends. I mean NONE. I was often berated by him for having ‘too many friends’, and he said to me once, ‘you have so many friends. I don’t understand why you have so many friends.’

Of course I have a lot of friends – it comes with the territory of having a terminal illness, and many of my deepest friendships I’ve been lucky enough to have since both primary and high school. He made me feel like an anomaly for having so many people in my life, and the devil on my shoulder would feed my paranoia. It would whisper to me, ‘you have him now – you don’t need anyone else’ and ‘so you’re staying in for the eighth day in a row. It’s nice. It’s cosy and this is what love is. You have all you need.’

And so … forgiveness. I’ll admit it took a while, but when it happened, I felt like a big, beautiful soufflé. So much lightness. I had risen above; I had survived. I had sown every negative emotion and thought into loose earth and it all just fell away. It took a lot of compassion, but I got to where I needed and wanted to be.

About a year later, and still in the throes of devastation and anger, I met a man. A real man. He was older than me and we just clicked. It went on for long enough for me to realise that I deserved a champion and I’ll forever be in his debt for treating me with such kindness. It was as though we wandered gently into each other, and that was what I needed. The lure of introversion and introspection was now my solid foundation, and we bonded over his spectacular collection of vinyls, books, film and some lust. We are now dear friends who don’t see each other enough.

I believe that forgiveness was key to my healing, as was compassion. Forgiveness is the only way to move on from something or someone that has left you an empty shell.  I felt compassion for Grug because nothing and no one would ever live up to his expectations, and he was never going to be happy, even if he believed he was.

And so my message is this – NEVER let anyone change the essence of you and your spirit. Know that you deserve beautiful people, experiences, joy, love and light in your life. Have honest friends who will look out for you vet people you bring into your life. Be selective about who you do and don’t invite into your life. It’s basic self-preservation. You have to be vigilant about people.

I’m blessed to have a few brutally honest friends who know how to say ‘I don’t think so – I’m going to smack you over the head/what the fuck are you thinking?’ if I so much as look at a person who is not deserving of my time, intention or passion. I could never read people, but have found a a few strategies to be trusting, but wary, so if you’re like me or even if you’re not – surround yourself with good people. Believe in the power of forgiveness and be liberal with your compassion for others who are not as emotionally or spiritually evolved as you.

And now for a song. There always has to be a song that comforts, that placates and gives hope. With compassion Grug, I give this to you.

*I mean, REALLY. I grew up on metal, but Tool?

9 1/2 weeks, Princess Diana and trampoline competitions

I’ve always dreamed wildly; the dreams being intensely vivid ever since I can remember. I’ve even dreamed about people who have ‘visited’ me. When I was six years old, my friend Rachel floated through my window and sat on my bed. I knew she had been very sick, and possibly knew she was dying. Rachel said that she had to go and that she was coming to say goodbye. We talked for a while and then she floated back out the window. I told my Mum about it the next morning, and as it happened, Rachel had died overnight. I remember Mum saying, ‘that wasn’t a dream,’ and giving me a big cuddle, then telling me that Rachel had indeed ‘gone’. I found it comforting that my friend had come to me to let me know that she was leaving.

I excessively dream/night terror. Many are strikingly real and can sometimes stay with me for days. A University of Iowa study in 2003 revealed that people who are creative, imaginative, and prone to fantasy are more likely to have vivid dreams at night and to remember them when they wake up. David Watson, a professor of psychology in the University of Iowa College of Liberal Arts and Sciences, said that the more bizarre a dream was the more likely his subjects were to remember it.

Around 2.30am this morning, I woke in a horrific sweat that saw me tearing my sheets off (who wears clothes to bed anyway?) I was exhausted from all of the salt I’d lost with the series of sweats that I’d had, so I made a cup of tea, swallowed a handful of salt tablets, dried off and after about half an hour, I ambled back to bed.

And then the dream began.

It started with a friend and her young son who was – at least in my dream – a trampolining champion. She had made a dessert of creamed rice, sliced peaches and berry coulis, and while one of my best friends and I tried to calm her down about her sons trampoline competition, I dipped my spoon into the bowl, making sure I had loaded my it with extra coulis based on my love of berries. With my friend being so panicked, I decided to jump on the trampoline with her son to get him started, and he blitzed the entire competition, beating kids and adults alike. My friend then relaxed and wondered why she was worried at the outset. Her son had excelled, her face had unfurled from concern and she was happy, content and still.

Within seconds of her son winning the championship, a media fracas erupted. My friend was interviewed and for some strange reason they interviewed me. Just as the reporters left, the article instantly materialised in the newspaper we were holding, just as they do in the Harry Potter books and films. The headline read ‘Born to trampoline’, but the article was about my medical journey, which of course bothered me immensely. This wasn’t about me. The reporter who had got it so wrong was Brisbane city councillor Milton Dick, so I chased him and Princess Diana up an escalator to tell them they’d made a mistake; that if they wanted an article about me than they should do one solely on my friend’s son and his trampolining talents and if they were that desperate for a piece on me, they could write a separate story. After all, it was all about the little boy winning the championship.

As I climbed the escalator, the air so dense and humid – like swimming through jelly – Princess Diana, who was at the top along with Mr. Dick, was trying to get a literal foothold of two books that kept being swept away by the lip of the escalator. I tried to get to the books, but she eventually trapped them with her feet and they both walked away. Because I was trapped at the top of the escalator, I threw a fishing rod and a broom at Milton Dick.

Meanwhile, at my 20 year high school reunion where the mean girls were still mean, I was standing in a communal bathroom – much like a toilet and shower block at a school camp, but with fancier fit outs – when a fierce African-American woman began swearing at me and spraying offensive words as she stood behind me. I looked into the mirror and I had long, dark brown hair, brown eyes and olive skin. I swore at her in a language I had made up, and she laughed maniacally because she thought she had me. She presumed I was speaking Columbian, which would mean I was speaking Spanish and I knew that she was an ace at the Española. I bit back, telling her it was Swahili, at which point she became bitterly affronted, flying into a rage. I’d won the first battle and so left the bathroom with a feeling of empty victory.

I then found myself at an event that Tom Cruise was MC’ing. There was a big room, much like one you’d find at a runway show where my school friends and I were getting dressed and made-up for some sort of grand event. I was the last to leave and thought it odd that Tom Cruise had waited until everyone had left, because he wanted to talk to me. I remember feeling panicky and not flattered at all. I thought (just like in real life) that he was weird and had dastardly plans to make me his concubine, or worse – his wife. The second time he waited for me, Uma Thurman was in the room and wouldn’t leave. Thanks Uma.

Skip to the next frame, and I find myself in the company of a tiger – his coat silken, but flocculent. In the foreground was a rawboned looking woman who had been looking after the tiger as though it was her child, and though she said the tiger really liked me, I just couldn’t trust it. It would deliberately catch a claw or scratch a tooth on my skin like some sort of weird power game. It was in control and it was like 9 1/2 Weeks, except without Mickey Rourke. And without the food and the hot sex and Kim Basinger’s hosiery and the horse whip. Dream fail.

And so the lady and the tiger were separated which left her bereft. So bereft that she collapsed and was laid down on a stretcher. Who cares, I AM STILL FANTASISING ABOUT CRAWLING ON THE FLOOR FOR VINTAGE MICKEY ROURKE BECAUSE I MAY HAVE WATCHED IT LAST WEEK. It then emerged that she had lost her daughter to Cystic Fibrosis many years before, and so the tiger was akin to a replacement for her child. She showed me photos of her daughter who she said I had known. But I couldn’t remember her child and felt an acerbic stitch of guilt.

I comforted her until her wailing became a soft sound of regret. She stayed on the stretcher, and her face shrunk as the minutes passed. It was as though the more she talked about her dead daughter, the more life drained out of her. She was pallid and cyanotic, having taken on the look of an end stage AIDS patient. We were at the top of an amphitheatre full of people; a massive audience. My parents were there, as were girls I went to school with and I ran down the sparsely spaced steps. The audience turned their attention from Tom Cruise to me; my bare feet hammering into the timber thumping through the air.

Skip to another room and there’s a young man with Down Syndrome who was sweet, but was using his condition by trying to kiss me. I resisted and told him ‘you can’t use your disability as an excuse to do whatever you want’. I said that it would be like me having CF and taking advantage of people and situations, and that it was morally wrong – ‘I know how having a terminal illness works, buddy. You can get concessions and things that would otherwise be out of reach, but just because you can doesn’t mean you should.’ PREACH!

A group of people made up of strangers and friends nodded in approval, and then I fell into a pond after missing a stepping stone because of the darkness that quickly peeled over me.

NOW ANALYSE THAT.

CrazyDreams

The perils of writing a book that can (but doesn’t always) mess with your head

You know that you’re dedicated ready to be committed when you’re writing a book and the following things happen. Things that don’t seem to perturb you, even though they should.

– you conduct all business from bed. Phone calls, emails, conference calls, interviews, reading coroners reports and court transcripts, skype sex or any sex for that matter.

– you realise that strawberry breaka’s are your poor man’s smack.

– you fly into a panic when there is no caffeine in the house.

– you think to yourself that the tiny spots of mould on those crumpets really aren’t that bad. You will just excise them with a knife, surgical style, as one would a melanoma.

– you don’t know what the weather is doing until you go to the BOM website.

– when midnight is ‘turning in early’.

– you feel guilty for reading fiction.

– you hold off on having a shower. For two days.

– you start writing a short story titled ‘Fuck you, you fucking fuck’, and end it there, because you’re happy you wrote anything at all.

– you write haiku for yourself.

– you begin to believe in astrology a little too much.

– you haven’t eaten vegetables in a week and look like you have scurvy.

– you go to the supermarket in your Ugg boots. While wearing your pyjama pants that you try to pass off as ‘leisure wear’.

I’m happy to say that this behaviour was when I was stuck in the hell that was ‘Jet’s Lore’ and that times have changed (aside from the supermarket in pj’s thing, because really – who gives a fuck in West End, anyway?)

These days I’m more than likely in the kitchen being a Vitaminx and blending all manner of veggies, clay and super greens into smithereens, drinking pots of tea, having early nights and early mornings, not watching t.v, trying my best to not eat wheat, but sometimes baked goods just make their way into my hands, mouth and belly … and though there are some days where I can barely breathe because of what I’m remembering and writing, I get out and about and cry in cafes instead of at my desk.

Apologies to Pear cafe and Blackstar, who had me as their poet in residence for six months; Avid Reader, Specialty Cup and that one place in Toowoomba where I lost my shit over brekkie last July on my solo sojourn to the Garden City. Blessed be that I had the Review section of The Australian to stuff in front of my face which I pretended to read so my fellow diners didn’t have to see my squished up crying and ‘looking-like-a-hog’ face. I’m very selective about where I do my public crying. It doesn’t happen often, and nor does private crying – about sadness, anyway. I cry often about joy and miracles and love and kindness. I weep for the magic that happens every day, because I did too much crying as a kid to lose any more tears over things that are sorrowful. Bring on the magic, I say and as Dallas Green affirms – ‘Bring me your love’ ♥

No, it’s not chemotherapy, but …

… it’s crushing exhaustion, aching bones, rigours, a barely there appetite, heart palpitations, diarrhoea, nausea, seizing muscles and I can’t seem to get enough sleep. Most mornings it’s a struggle to even sit up in bed, mix my antibiotics and push them through my CV line.

‘Antibiotics?’ I hear you say. Yes – antibiotics. Whenever I get a lung infection and have to have a very obvious CV line indelicately threaded into my jugular and stitched onto my neck, people look at me and assume the worst. I’ve heard people whisper, ‘oh, she must be on chemo,’ or ‘She must be on chemo where she doesn’t lose her hair – how wonderful’, ‘I wonder how long she’s had cancer for?’ and worst of all, ‘I wonder how long she has left?’

For the record, I don’t have cancer – not this year, anyway. But when people find out that I’m on an antibiotic regime and not chemotherapy, they immediately express their relief and tell me that they’re glad it’s ‘nothing too serious’. I guess it’s not ‘too serious’ until the antibiotics stop working and I die.

Right now, I’m on three antibiotics: Meropenem, Cephalothin and Tobramycin. Twice a week I have blood tests done to see if my Tobramycin level is too high, and for the last week, it has been. High Tobra levels can send me into kidney and liver failure and affect my hearing to the point of going permanently deaf. Before my transplant, my levels were so high, I was falling over from vertigo, headaches and tinnitus. That’s not before the nausea, diarrhoea and rashes. And that’s just one antibiotic.

Tobrymycin has left me a shell of who I was seven days ago. I’m barely getting around the house and the need to throw up is never far away. I can’t go shopping because this lethargy has me on such a short leash, and I’m afraid of shitting myself in public, so I had my groceries delivered last night. I was too tired to put them away. Again – Tobra is just one antibiotic.

Meropenem and Cephalothin can also send me into renal failure and I’ve had consistent nausea and diarrhoea. For the first four days of IV’s – and even now – I couldn’t do a solid shit, was dosed up on fentanyl for pleurisy and had violent sweats and the vomits. But hey … it’s not chemo, is it?