Tag: Parents

The night I lived again: part three

There is beauty in the ordinary. Waking up, making coffee, washing my hair, going to the post office. All ordinary things made extra-ordinary because I am here to do them. I woke early and watched the moon sink and the sun rise. The east screamed tangerine and the sun pierced the thin veil of sky with a restless yearning – as if it needed to be seen by  human eyes so it had proof of life. ‘I am here!’ it bellowed through the clouds.

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Not surprisingly, I was much the same when I woke up following my transplant surgery. I was still intubated (on life support), and my first physical response was to try and pull out the hose tube that was down my throat. I remember Dad finding me a notebook and giving me a pen so that I could write, but all I could manage was scrawl and for a few seconds, I thought I was brain-damaged. But was I even alive? I could see Mum, Dad, my sister Nikki, my boyfriend Lachie and one of my best friends, Laura. Someone then found Dad an alphabet board, so I could point to the letters. The first letters I pointed at were –

‘A M  I  A L I V E’

Everyone laughed and nodded their heads, saying ‘yes, you’re here – you’ve made it.’ Then I pointed out the letters ‘I  L O V E  Y O U’ and I couldn’t tell if everyone was laughing or crying or both. All I wanted to know was if I was alive, so when I knew for certain, I started thrashing around on the bed because the tube down my throat was choking me. At least that was how it felt.

For the next three days, whenever the sedation wore off, I would thump around like a frightened yearling and try to pull the tube out. That was until a nurse rushed at me and pushed more sedation through the I.V in my neck. What surprised the doctors, was that I needed about five times more sedation than the average patient of my age and size. They worked out it was a combination of stubborn and a high tolerance for not only sedatives, but barbiturates, general anaesthetics and opiates. Here’s Mum watching over me. It saddens me to see the distress etched along her cheekbones and forehead. I often wonder how much this experience both eroded and strengthened her.

ASLEEP

 

 

 

 

 

 

My friend Sharon, who introduced me to Alicia (they were studying the same course at the Queensland College of Art), and my Mum are smiling here because they can see that my fingers are pink after having been cyanotic (blue) from the lack of oxygen in my blood for so long. The fact that Sharon would cry and faint at the sight of a needle and/or blood (I remember her screaming when we had to have our TB immunisation at school), she did incredibly well with all of the needles, tubes and machines. Sharon has since had three babies and can now deal with blood. I’m very proud of her evolution.

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This is what an end stage Cystic Fibrosis lung looks like. I always liken it to a dead bat.

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When I initially went on the transplant list, I was told that I would more than likely have a long wait because my lungs were so small, which meant that I might need the lungs of a child. This never sat well with me. It was like a stone in my belly. Knowing that I was essentially waiting for someone to die so that I may live was an already heavy burden, let alone knowing I may end up with the lungs of a child inside me who had not lived a long enough life, often made me feel physically ill.

Transplant can be is a mental and moral minefield. A girl I had grown up with could never reconcile the fact that she had another persons lungs inside of her, and she died a couple of years after her transplant full of that terror. During a transplant assessment to determine if you’re medically viable for transplant, among the barrage of tests is a psychiatric evaluation in order to ascertain if you’re stable enough to endure the possible mental rigours that go hand in hand with having such life-altering surgery. The transplant team has to know if you’re going to be compliant. Are you going to take your medication religiously? Are you going to look after yourself when you leave hospital? Do you have adequate familial and emotional support to cope post-surgery? If the patient has emphysema, will they start smoking again? Unfortunately the answer to the last question can be ‘yes’. I’ve known patients who have taken up smoking post-transplant, and I can only imagine how this makes the doctors and other medical professionals feel. Personally, I want to give them a high-five. In the face. With a SHOVEL. I want to repossess their lungs and give them to someone who deserves and respects them.

For me, having a transplant is a shared responsibility between my donor and I. It’s a shared duty of care. They’re not my lungs – they’re ours. I’ll say ‘my lungs’, but what I really mean is ‘mine and hers’.

And so, I was extubated (taken off life support and breathing on my own) after three days and I didn’t stop for talking. For days.

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Mum, Dad, Laura, Lachie and Nikki were never far away.

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And neither was Sharon, my Blood-Sharps Princess Warrior 🙂

SHAZZA

 

 

 

 

 

 

Lachie would often leave me writhing in pain because he made me laugh so much …

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My first walk with Mum in tow. Always with me.

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My favourite ICU nurse, Allan. He did a superb job of extubating me, so I love him extra hard.

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But like any journey worth writing about, it wasn’t all beer and skittles/sunshine and rainbows. In the second week, I began to wheeze and it became steadily worse over a weekend. I was home on day pass and I bounded up the stairs where I did a Rocky victory jig (except that no one was watching). I let everyone know that I’d made it to the top of the stairs without dying, and I noticed I was wheezing.

‘I must have got an asthmatics lungs,’ I said, and everyone clapped at my efforts and laughed at what I had said about my wheezy lungs.

Scott Bell, my lung transplant consultant, was sick that weekend, so another doctor – a heart transplant consultant (hearts –> chalk/lungs –> cheese) assumed that it was asthma and so prescribed me nebulised ventolin. The problem was that it wasn’t asthma and by Monday morning, I was critically ill with the worst rejection Scott had seen up until that point. I had essentially been misdiagnosed. Scott was not happy. You don’t get Scott unhappy.

I had bronchoscopy after bronchoscopy, was moved back into acute ICU for an afternoon for observation and my morphine dose was increased. Rejection was the worst pain I had been in since the epidural had been removed a week earlier. When the epidural was pulled, someone may as well have poured fuel over my chest and set it alight. I’d never suffered – really suffered – with pain so fierce and searing before, and I’ve only experienced it once since and that was after my cancer surgery in 2007. In my ‘Transplant Diary’, where Mum and Nikki wrote everything down every day, Mum writes on the 31st August, ‘Carly is in extreme pain, like someone is sitting on her chest. She is having morphine.’

The other drug they increased was my prednisone (cortico-steroids). Massive doses of methyl-prednisolone pulsed through my body for three solid days, as well as other drugs you’d think would be better at stripping paint off the walls. My doctors were calling transplant units all over the world to try and save my life, and though we knew the rejection I had was serious, it wasn’t until six months later that Scott told me how close I came to dying. Even when I see Scott now around the hospital, he still shakes his head and says, ‘I’ll never forget that rejection. It really was an extraordinary time.’

There’s that word again. Extraordinary.

But I’m more than happy with ordinary. Ordinary means simple, and simple is beautiful in its truth and brevity. After I spent some time with my folks and two of my closest friends, I stopped at a shop which has everything that I love – coloured wooden blocks, cotton socks, porcelain birds and winsome stationery – and I bought a teapot and the matching cups that I’ve been looking at for a while. It brews a lovely cuppa, and every time I pour from the pot and drink from the cups, I’ll think back to this ordinary day in all of its staggering and miraculous beauty and all of its blessings.

Without my family and friends, I am nothing. I am a body with a stagnant soul  

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I’m *very* spoilt …

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YES 

 

 

 

Here’s to our shared good health 

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The night I lived again: part two

By the time it was definite that the donor lungs were a match, there would have been at least 35 people at the hospital – all friends and family. Even a friend’s boyfriend (now husband) had driven down from uni at Gatton, so he could be there for both me, his now wife and my other friends (love you, Davey!!)

My boyfriend at the time, bless, had arrived at the Prince Charles drunk. With flowers and chocolates. Which I couldn’t eat. I think they became someone’s breakfast. He had been having a night in with the boys at his place, and they all very quickly sobered up when I arrived by ambulance. In fact, most people had beaten ME to the hospital. My Dad ran about three red lights and my best friend ran at least one (what a way to become an organ donor …)

I was taken up to the respiratory ward and we waited in the day room for a couple of hours before I was put in the wards only private room. The only problem was, with the amount of people I had with me, there was a fair bit of noise and it was now around 1.30am. We kept on getting in trouble from one particular nurse who reminded me of Maggie Kirkpatrick’s character on ‘Prisoner’. She could get as angry as she wanted, because I soon discovered that she was going on six weeks of leave when she left handover that morning.

Carly: 1

Grumpy nurse: 0

You do silly things when you’re about to die. You put bowls that are used for vomit on your head.

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I got to say my goodbyes to each of my friends, one by one, and it was excruciating, both physically and emotionally. My friends held me so close – I remember my friend Tammy especially – and the pain was almost unbearable, but I wanted to do it. Parents of friends who lived in Melbourne brought up prayers and messages for me, and while I was grateful, I was too sick to give any sort of response, except for ‘thank you’.

I was told to ‘have a sleep’, but I wanted to spend as much time with my family, my partner and my friends as possible. And so, around 8am on the 22nd August, I was taken to theatre. This distress is so palpable on my sisters face, you can almost touch it.

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If there is a photograph to capture my most life defining moment, this has to be it – saying goodbye to my sister. So many goodbyes that morning.

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I hugged my parents and my sister, kissed Lachie goodbye and was wheeled away.

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All night and all morning I had been at peace. I wasn’t particularly worried and at one point, I’d had to tell everyone else to calm down. But when the orderlies began moving my bed in the opposite direction of my family and friends, I lost it. Up until then, I hadn’t been too worried – a possible combination of morphine and the desperate yearning to have my old lungs taken out of my decaying body. I wanted the next moment more than the last, and while my body couldn’t fight for it, my mind could. But then my brain broke. Split open like over ripe fruit.

I don’t know where the sound came from, but as I was being spirited away, I looked at the people gathered behind me and I wailed. My body was wracked with sobbing, because I had finally realised that I may never see any of these people again. I could die on the table (that’s another story) or I could make it through the surgery, get out of theatre and into recovery, only to die.

My friends subsisted on chocolate, cigarettes and a carload of Maccas when I was sleeping. Cigarettes. The irony has never been lost on me. Inside the O.R was (as all O.R’s are), subarctic. I was covered in foil to maintain body temperature and given warm blankets as I lay there waiting to go to sleep. I had beautiful conversations with doctors and the nurses and they were able to get me into a state of repose where I even asked the surgeon if I could have a couple of 500ml bags of saline popped into my chest

The Propofol was slowly leaked through an intravenous line in my chest, and I happily surrendered to the milky white liquid like a little death. My last words? ‘Save me, for I am the Sex Goddess.’ ‘Sex goddess’ had followed me through high school as a nickname, except though I didn’t have sex until after I’d left school. But ‘sex goddess’ it was.

Here are a few of Alicia’s brilliant photographs while I was having my transplant.

Here, the surgeons are suturing up my clamshell cut after six hours of surgery. Little did they know that they’d have to rip their beautiful embroidery apart when I had to be taken back to theatre for bleeding.
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Something's up copy

(I would encourage you to click on these photos so you can see the more minute details)

In recovery. Alicia snapped at the *exact* moment this doctor realised I was bleeding internally, so it was back to theatre to resolve some ‘plumbing’ issues. It pulls on my heart when I see the nurse holding my hand. It’s the little things that for me, mean so much, and I know my family would have appreciated the comfort she was giving me, even though I was in a coma. It’s the whole ‘show, don’t tell’ mantra that writers use, or ‘demonstrate, don’t state.’ And in this gentle gesture, this is exactly what she is doing.

And so this time fifteen years ago, I was dying. I’m two hours away from getting ‘the call’. I get a little introspective on Transplant Eve, but it’s time to head to bed. I’m having a quiet celebration with some friends and family at one of my favourite cafes tomorrow, and on Saturday night, we’ll head out to toast my donor and her family.

Part three of my transplant journey will be with you sometime tomorrow …

The night I lived again: part one

I’m finding it hard to concentrate on my study today. It’s that time of year. It’s Transplanniversary* time. The 22nd will mark fifteen years since I was (at least this is how it felt) thrown back into life after being ripped from that tenuous march to death. Below is a photo me on my 21st birthday on New Years Eve in 1997 (my actual birthday). Between Christmas and here, I knew I had to put myself on the transplant waiting list. I’d been remarkably unwell at Christmas and the days after, but by some strike of grace, I was pulsed with energy for my twenty-first birthday. Looking at this photograph now, I look so serene and calm. Just like any normal kid. I look at this picture and think, ‘Pretty. Pre-transplant boobs. No scar. BT. Before Transplant.’

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New Year’s Eve 1997
 – my 21st birthday.

But when I peel away the layers of this photo, I was anything but a normal kid. I had the weight of my life on my shoulders (and someone’s eventual death who would save my life) and it burned my bones to ash. I didn’t want to be on the transplant list for my birthday, so I put my beeper away for the night and partied for nearly three days with friends, some of whom had come as a surprise from overseas, because some people were in on the fact that this might be the last party I’d have. My mum knew. My Dad didn’t. Mum knew because she had been there every single day, at every corner of my de-evolution. While C.F snapped at my heels, we tried to keep the multiple infections at bay with brutal antibiotic regimes, and towards the end, months of hospitalisation. Mum had also seen so many of my and her friends die while waiting on the transplant list, or not even get on the list at all. They simply just died.

My Dad is an eternal optimist and for quite some time, thought I could possibly regain some of my lost lung function. He was both optimistic and in denial, so the day that I literally couldn’t get out of my boyfriend’s car to look at my new room, he knew I was in trouble. I knew that he knew, and I remember feeling an absence, almost like a bereavement when he looked at me with his blue puppy dog eyes, as if to say, ‘please – PLEASE – don’t get any sicker. We’ll somehow get you lungs.’ I recall jokes about assassination attempts on triathletes.

Thankfully, my sister had come back from London so we could spend the remainder of my time together. I had been so shocked when she left in the February, it was as though my body had been hollowed out until I was a shell of skin and bone. For two weeks following my transplant, she didn’t leave my side. The night of my transplant, she was inconsolable. To see her like that was incredibly distressing and there was – until I did vipassana – much guilt associated with her, my parents and my friends feeling so unanchored and so very much in despair at my condition. I still find it hard to wrench my head and heart back to that space of seeing my loved ones not just feeling, but looking so adrift and hopeless. Literally hope-less.

I have hundreds of images that were taken by my friend Alicia Alit-Trevatt, an exquisite photographer who I met in the January of 1998. Me and my transplant journey were to be her subject for her final piece of assessment for her photography degree. We signed all manner of legal waivers with the Prince Charles Hospital, so that if I was to have the transplant while I was still the subject of Alicia’s project, she could be allowed entry into the theatre to take photographs of my surgery. As luck would have it, Alicia was also an intensive care nurse which bought us of lot of clout. The doctors and surgeons were more than happy to have her in the O.R should the transplant proceed. This is one of Alicia’s first images of me (a photo of a photo, so not the best quality). I am 21 and on the threshold of falling in love.

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For nine months, Alicia followed me around to all manner of appointments, parties (there were a lot of parties in 1998, and so much drinking), outings and modelling shoots like the one below. By another stroke of grace, I was disconnected from my port-a-cath for this nude shoot with my friend Sharon Danzig.

IMG_2036IMG_2037In the days preceding my transplant, I was in both chronic and acute pain and on morphine (before palliation was an option for Cystic Fibrosis) as my lungs had shrunk and essentially died from a lifetime of infections, cysts and bleeds. I knew I was dying, and I wanted Alicia to document my impending death.

But then the call came just after midnight on the 22nd August, and when I arrived at the Prince Charles hospital after being transferred from the Mater, Alicia was there with camera in hand, her spirit shining. I think she knew it was going to happen. But we did, too. There was never a question as to whether the lungs were going to be ‘mine’ or not. My family and friends had never heard about false alarms. I remember my Mum saying, ‘This is it. It’s going to happen. The lungs are yours‘ and I believed her. I had to believe her.

I remember my transplant doctor Scott Bell saying ‘this isn’t going to be easy’, and Alicia must have depressed the button on her camera at around the exact time Scott told me this and about what lay ahead. I just wanted my old lungs out and the donor lungs in.

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Scott and I the night of my transplant.

Part two of the story to follow, but for now, here is a poem I wrote last year about my transplant experience. It’s in a very raw, unpolished state.

Thrown

When you’re thrown back into life, you’re thrown from a moving train.
That first thump and roll; the aches and bruises that follow
untether you from your carriage.

Going from an empty husk of a woman – all lily-white like a hollowed out cockleshell –
empty but for the roar when you nurse it against your ear –
that was me.
My tender armour covered a pod of barely working organs
where there was a flicker of movement in the rattle of wet lungs and a clogged throat.

*

I would see things from my bed because I couldn’t walk anymore.
My muscles had melted into small pockets of goo
and I’d bend my head to see the leaning moon,
so still on its haunches – lazy, laconic and deathly still.

I had always shunned the sun and watched the moon.
Silently I would call it; aching for it to speak with me or move just a little,
but there it sat like a mute friend – giving me the answers I needed –
a silent partner to ricochet off my rattling chest and bag of bones
where I’d reach into sapphire skies and pray for Bedouin.

I was all tied up on the wrong end of the dream, dripping time.
My chest cut open and sewn back together like a clam – a cautious cut.

Hurled back into life – that rattle now silenced and replaced
by the pulse of machines breathing for still bleeding lungs,
taken from another who was now dead,
and lowered into me like the hull of a virgin ship into water.

*

A rekindling; the universe wanted to keep me.

In the daytime, I would wake up
with eyes like a hunted here,
knowing I was alive because I could feel
that hose in my mouth and its slink down my throat.
But more, I felt the fire beginning to burn on my chest.

I’m at the coal face of my body,
wondering how I came to be here – alive and hurting –
all dry lipped surrender.

Mad as a circus cat,
it was an exercise in patience until the next time I woke up –
snapping and grabbing at the tube
until a milk filled syringe was emptied into my neck and I knew the fight was over.

When the tube was pulled, my cough was a projectile.
A quadrant of doctors, gathered in the corner like vultures,
laughing about some dialectical shit.
My first words – ‘get the fuck out of here’
I was crying and trying to shout with my wretched vocal cords.
They moved to the desk and I shouted ‘you disrespectful cunts!’
I never saw those doctors again and that was probably best – for them.

This was the first time I’d been thrown.
Thrown onto an operating table, flung into recovery,
sucked back into the furnace of theatre and ferried out again.
Funnelled into a solitary pod, the hose wrenched from my raw throat
and then I – hosing away doctors out with my mouth.

*coined it

Plan F

I’m a full-time healthcare provider. To myself. People assume that you’re cured after transplant, and that you go on your merry way with your phenomenal donor lungs and you live forever and ever with just the odd complication, sail through life, find a partner, have a lovely courtship, get engaged, get married in between a fabulous career and shit and maybe even have a baby and yeehaw, THIS IS YOUR LIFE. YAY!

But stuff happens. Unglamorous stuff like bowel obstructions, cancer that will keep returning, anaemia, addiction, diabetes, painful infusions for osteoporosis, rejection, migraines, lung infections, chronic sinus, life threatening blood clots, and that one time when your adrenal system fails you and you literally drop dead at your friends funeral where your Mum has to resuscitate you. Talk about stealing someone’s thunder, but apparently I ‘died’ very elegantly and without much fuss. Side note: Thanks Mum and the White Ladies who diverted traffic so I could be ferried across a main road to a medical centre.

And so last week, I started uni. You would think two courses would be simple enough, even if I’ve missed out on the first three weeks of lectures and tutorials because my enrolment was all very eleventh hour*.

After I’d slept all day Monday and all night, I woke up exhausted yesterday, unable to get out of bed. I tried to convince myself that I was ok, to the point of saying out loud, ‘I’m fine. Really, I am. It’s just the general anaesthetic that’s making me feel yuck. I AM NOT GETTING A CHEST INFECTION.’ I repeated this until I started getting breathless, which was about third canon in. I felt like I was coming down with the flu, had a productive cough; I was having hot and cold sweats and my resting pulse rate was 100.

My gem of a Dad rushed me off to hospital and dropped me off with my overnight bag – the same overnight bag I gave a stern lecture to on Saturday morning after I went home the following day after my sinus surgery, in that I didn’t want to see it again for the foreseeable future, unless it was for a dirty weekend or for my trip out bush later this month.

I sat on my bed and did something I rarely do. I cried. It’s not that I’m a hard human being. In fact, the most benign things make me cry. Music mostly. It is easily the most affecting art form, but crying makes me feel torpid and vulnerable. I want to push myself away from myself, but I can’t because I’m so present in my body. Crying also gives me a roaring headache and I end up wondering what I was even crying about, because everything that I should have cried over (but didn’t) bleeds into what I’m feeling, and I cry like a kid who’s had his Tonka truck taken away.

But back to yesterday. I underwent my usual tests after which I saw a doctor I’ve known for a couple of years. We’re not ‘close’, and while I don’t know him particularly well, he’s an excellent doctor. He took my blood pressure, looked at my tattoo and said, ‘that looks fresh.’

‘No,’ I said. ‘It’s nearly five years old. It probably looks so good because I don’t go out in the sun and I slather myself in sunscreen. I’ve got really good genes too. Apart from the C.F ones, I mean. You should see my Mum. She looks amazing for her age.’

He raised his eyebrows and nodded. I’d rambled too much, and so cleared my throat, closed my mouth and darted my eyes southward to the benign hospital carpet. I either say too much, or too little. There seems to be no middle ground. For example, I’m currently crushing on someone who doesn’t know it (or maybe he does – who knows, but if you do, speak up, because I can’t!) who I’ve only ever managed a smile or a ‘thank you’, or a really loud ‘hi!’ or ‘great!’, or ‘can you please put my coffee down for me, I have the shakes because of the drugs’ with. Oh yeah – ‘I have the shakes because of the drugs?’ FFS, Carly.

So back to yesterday … My blood pressure was uncharacteristically low. So call me underwhelmed.**

Five years. What have I achieved in five years? Some small stuff. Nothing major. Except for surviving. I haven’t finished my research Masters or my novel, simply because ‘stuff’ gets in the way. Some obstacles are too big to go over, so I have to go around and that takes time. I’ll not forget when a friend said to me that I always seem to ‘take the long way round’. We were 19, and I said calmly that I’ve had some stops along the way. We’re do’t really see each other anymore. Life has deviated for both of us and there’s really not a lot we can talk about. I’m also a big believer in that just because you have a history with someone, you don’t need to maintain the friendship for friendships sake.

So when ‘stuff’ happens (read: when I become unwell. I’ll rarely say I’m sick – ‘sick’ is reserved for when I’m on life support), I make other plans. Because I always have a Plan B, C, D and E. Sometimes, I even have Plan F for FUCK ME, UNIVERSE – ARE YOU SERIOUS? But I always get through it. Whether I’ve had my chest cracked and opened up like a clam for transplant or my vagina ripped to shreds first through topical chemotherapy and then peeled off like the skin of a grape when surgery was my only option, I get through it. Even with a poo bag, I managed. I’m not saying I managed it well. Maybe I did. Maybe I didn’t. But I managed.

The last five years have been about survival and just that. I’ve learned so much – about myself, about the world I find myself in and about other people, in both stop the clock beautiful ways and in less lovely ways. People can be … fucked. There I said it. People can be fucked. I like to think that for every misguided human being, there are three earth angels who are all managing their best. And that’s why I want to help look after people. That’s all I’ve ever really wanted to do – to be a light in the dark for someone when their light is fading.

We’re all just managing. I am just surviving. Every day is a new beginning. We’ve got this, people so let’s slather on sunscreen, pull on our boots and look fabulous while we’re doing it (thanks again, Mum).

* Currently checking to see if I can study just the one course this semester and an intensive in summer semester.

** which won’t last very long. I’m guessing I’ll be hypertensive tonight when I watch Patrick’s funeral on Offspring. And Nina gives birth #ohsweetbabycheesesicannotibelievethisishappeningandirealiseitsonlyatvshowbutFUCKIneedsomeEddieVedderrightnow

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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?

Happy Birthday, Dad ♥

Today is my Dad’s birthday. Words do not come easily when I speak or write of my loved ones. Sometimes I don’t know where to begin and if I do begin, it’s often impossible to know where to end.

So I will say this … I love you, Dad. You have loved me unconditionally, fought for me when I could not, threatened to kill for me when I could not, and you never gave up when things were seemingly insurmountable. Thank you for loving me, protecting me and fighting for me. You make me feel safe, lighter and so grateful that I have you as my father ♥

Here are a few photographs that capture the essence of me and Rosco …

After my ‘pre-designer vagina’ party back in 2007 that although he was horrified about, still came along to (we’re both just a little bit refreshed here)

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This was taken after my cancer surgery. Within days, I’d be fighting for my life and my Dad would be fighting even harder.
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Being an awesome grandad 🙂

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At Jose Feliciano …

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My all time favourite photo. 1996 at the Old Friary at Brookfield. One of the best days ever.Image

Peace, love and firearms

I often say I’m like the son my father never had.  I love cars, and Dad has some beauties. I love driving my Jeep, and can’t imagine ever driving an automatic anything. I love speed – cars, boats, planes. And another thing … I. Love. Firearms. Always have and after today, I undoubtedly always will. Until today, the only gun I’d ever shot was a .22 in a string bikini (those photos are in a VAULT), when I shot a roo out on my friends cattle station in Barcaldine. I remember being in the pool with Jayde and Katrina when the call was put out that we had roos just outside the fence, so I pulled on my boots, grabbed the .22 next to the stereo which was blaring out (cue mood music) Fleetwood Mac’s ‘Tusk’. To make a long story short, I managed to get the roo on my second shot from arounf one hundred feet. I walked out into the paddock to ensure it was dead. There are humane ways to kill pests on the land – don’t get me started on shooting kangaroos because I will win the argument and I’ll wipe the floor with you. 

When I took my Dad out to a shooting range to gun school for his birthday on Monday, I was really out of practice and so was he. Dad or Rosco as we call him, has amazing stories about living in the outback back in the day and some of them involve firearms. I’ve injected most of his stories into my novel set in 1973 outback Queensland because it’s always good to go to the source, like my mate Gordon Greber.

This morning was sub-arctic. Even Rosco – tough as nails – was feeling the chill. We were in a group of nine and we started on the pistols (two different calibres – the second obviously more powerful than the first). We both thought we’d fall in love with the pistols, but more gun-a-licious fun was to come …

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^^ Friendly fire! I call this ‘you have awesome donor lungs and my friend needs a transplant – FREEZE!’

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^^ Dirty Rosco.

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^^ Smiling assassin … and yep – he’s still a crack shot.

We then moved onto the semi-automatics. We loaded the magazines ourselves, and away we went, moving to a higher calibre after ten shots. I was jubilant I’d brought my Mullum market gloves because it really was *that* cold.

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^^ Don’t fuck with me.

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BTW, I’m loving Rosco’s growing his hair. Why? Because he can. It’s very Wyatt Earp (I must get him some pomade …)

But it was the shotgun I had the most fun with when we were shooting at clay targets – one of which I actually smashed. It made me feel empowered and I jumped on my teacher, Lloyd and then the other whose name I can’t remember and he picked me up and twirled me around.

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We had five rounds of these ^^ There was just enough recoil through the shoulder and jaw to get the adrenaline swirling. The photo below shows Lloyd, myself and another instructor. Tough as nails blokes who I’d love to interview for my novel.

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We then moved on for the final activity – black powder pistol and rifle shooting. We had a tutorial where we listened to some incredible stories about the American Civil War and the firearms we were about to use. A tortuously sad period of history, but incredible all the same. The fictional outlaw Josey Wales carried seven of these on his person. One under his arm, two strapped to each ankle, two holstered to his side, one in the back of his trousers and one under his hat as he fired. On a horse. Now that’s multitasking.

We were shown how the powder is poured into five out of the six chambers, and then sealed with a paste made of olive oil and bees wax. It’s a process and a gentle one at that. An exercise in patience, if you will – meditative. These men are passionate about history and were more than happy to lend their ear for a chat about the variety of firearms we were shooting with. I fired an exceptionally powerful revolver – the sound and power shuddered through my chest and into to my spine, then down through my pelvis. For some reason it calmed me. Then I had five shots with a smaller calibre revolver, and as I discovered with the pistol shooting, wearing spectacles can be tricky to navigate. That’s my excuse for no bullseye, anyway …

Our team leader, Debbie was an über impressive lady and just gosh-darn-it lovely. She’s a crack shot with revolvers – that’s her weapon of choice. All the volunteers at the range were so hospitable and kind – they couldn’t do enough for you. When I was shooting the clay targets, I told Lloyd that I shake because of the anti-rejection medication I’m on (a lot of people think I’m nervous, but I’m far from it), so he gave me a couple of tips – about breathing, ironically – and I was set. Love your work, Lloyd.

If I was to describe in one word what it’s like when you’re handed a firearm of any kind, I would say ‘responsible.’ Guns kill people and people kill people – it’s a fact of life – and I’m grateful that the Howard government initiated the ‘buy back’ scheme after the Port Arthur massacre. It’s their greatest legacy by far.

Yes, holding and shooting firearms made me feel empowered and in control and a little bit tough, but you need to treat these weapons with the utmost respect. Yes, I want to get my gun licence – I have for many years. There are a couple of properties I go to where guns are used and I’d like to be a licensed and proficient shot. It’s a long process and so it should be, although it’s rarely registered gun owners who carry out acts of violence. 

Shooting as a sport never made sense to me, but after today it does. It takes immense strength to hold a firearm and hold it steady for extended periods of time. I’m going to be a little tender tomorrow … in need of massage. Prepared to take any most offers at this stage …

If shooting was a sport at the Transplant Games, I’d be gold medalling the fuck out of life.

For Dad, his favourite activity was the .22 pistol and the .308 calibre of the semi-automatic. But being a Clint Eastwood aficionado, his heart lies with the black powder revolvers of old west and Civil War. For me, it was the twelve gauge shottie with the clay targets and the .308 calibre of the semi-automatic. Or maybe I developed grandfatherly emotions for Lloyd 🙂 Rosco and I had a beautiful day of bullets, mateship, high-fives and vast blue skies.

Far from being pacifists, both Dad and I are both lovers, not fighters, so I implore you to not confuse people who have a penchant for firearms as being pre-disposed to hatred or violence. It’s like putting me into a box where, because I love cars, I’m a dickhead on the road.

So while I connect with certain ‘blokey’ stuff, I meditate, drink gallons of tea, make a mean chai, and enjoy gentler pursuits like crocheting, tending my little rooftop garden, playing my harp, swimming and reading. Most of all, I’m kind, loving, spiritually and self aware, compassionate, and have an endless supply of love to give.

Below is my favourite photo from today. Happy Birthday, Dad. I love you ♥

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There’s gunpowder under my fingernails, I can still taste the cordite on my tongue, and there’s SO much love in my heart ♥