Tag: WHAT THE ACTUAL FUCK

Endings, beginnings …

A few months ago, I was driving to see a client, and as I always do when I’m on the Inner City Bypass, I quickly looked to my left where the Royal Children’s Hospital is. Or I should say, was. When I’d finished my shift, I drove back to the Royal, parked my car and got as close as I could to the site. I cried big, ugly tears, and had to take some deep breaths to ground myself. I took some photos and spoke to one of the traffic guys about my time in there.

Going back was not about burying my suffering. It was about bearing witness to the destruction of what had been my second home. That might sound hyperbolic, but it’s where I did half my growing up. It’s hard for people to grasp that I spent nearly half my life in hospital before I had my transplant. It’s about being there, grounding myself in the suffering that is still with me – the suffering that will always be a part of me, and when it comes to that suffering I’m not broken or stronger for it. I just am.

I don’t live in the past. I AM my past. It’s like that saying, ‘you don’t have a soul. You have a body. You are a soul.’ 

Just when you think you’ve released all the guilt, there’s a dark corner of me that feels I need to be there to pay penance for having survived when most of my friends did not. Sound stupid? Try living it.

This place is sacred ground for me and so many others. There were so many first and final moments on that land. I fell in love for the first time there and I never believed the time would come when such a place was torn apart piece by piece. The state government made that decision years ago when Anna Bligh decided to entertain her vanity project of a children’s hospital in South Brisbane because Brisbane had a perfectly good hospital and infrastructure at Herston because: politics. I can see the new children’s hospital from the place I’ve left (it’s revolting, just in case you were wondering), and I remember the uproar in the medical fraternity when the idea was initially tabled, both with doctors and patients.

Back in the 90s, I was in hospital for much of the construction of the ‘new’ hospital (the one that’s been demolished), and I also happened to be an inpatient when the Deen Brothers demolished the old hospital. If you live in Brisbane, you’ll know that the Deen Brothers were the go to guys who knocked down iconic landmarks such as Cloudland and the Bellevue Hotel under our despotic Joh Bjeilke-Peterson dictatorship. Under Joh, they demolished much of Brisbane’s beautiful heritage buildings from the 1970s and beyond, often under the cloak of darkness and surprise.

And so the Deen Brothers were given the job to demo the old red brick hospital buildings in 1993, and I was a fierce sixteen year old who took shit from no one so it was nothing for me to jimmy open a window so I could yell at the Deen Brothers ‘you heretic c*nts!’. I’d shout until I was literally blue, my face covered in the dust of my past, present and future. I’d do this as many times as I could during the day when I wasn’t studying or having treatment. I would rage and cry, and punch the glass separating me from so many years of pain and suffering. I would wait until they met my eye (because they would) and I’d rage and cry, and give them the finger. They must have thought I was a mad little girl, but they  were just doing a job. Maybe I was doing mine, and the job of so many souls who had gone before me in those buildings.

The one image that brought me to my knees was when the kitchen being ripped out – the timber splitting like kindling, and the terrazzo floors being smashed. I wanted to throw myself on the ruins of that building and die with it. I was sixteen and I was in a constant state of grief. Heavy, sodden grief.

I’ve often said that I don’t live with regrets, and that I live with lessons instead. But I do have one regret. I wish I’d got some bolt cutters to break into the old Adelaide Billing ward before it was levelled. I feel that regret in my marrow, and I have a recurring dream where I can’t get into the ward. But there’s another dream happening where I’m right there, seeing myself not being able to get into the ward. Sometimes I get in without the bolt cutters. The double doors open up slowly, and I can feel the cool, polished terrazzo under my feet.

I still have nightmares about its old lift that shake me awake, and leave me unable to get back to sleep. They’re cyclical, and after a watched the hospital being torn down, I had more recurrent dreams about trying to get into the old Adelaide Billing doors.

But with every ending, there’s always a beginning. The day before Christmas, I moved into my new house, and I’m beyond besotted. I can see the stars every night, there are trees as far as the eye can see, the birds sing to me every morning, and I think I have an owl after finding a feather from a Powerful Owl, which is curious because I asked for an owl to look over me at the beginning of the year. Sometimes life is funny like that.

And so, I’ll cast my attention to this new beginning with fairy dens, banana palms, owls, native hibiscus and old, thickly rooted jasmine. And yes, my new place has terrazzo floors …

With a little help from my friends?

I don’t usually share fundraisers, and I don’t have any time for often vacuous fundraising campaigns, but this one is so far from vacuous, I don’t even know where to start. I’ve said time and time again that Cystic Fibrosis is a fucker of a disease. It takes everything both necessary and dear to you – your breath, your mobility, your dignity, and then your life. As I roll through life, it just keeps taking. The only thing it’s ever given me is an almost debilitating sense of fear.

So I’ll cut to the chase before I *totally* lose my shit.

I grew up with a lad called Matty Kidd. – one of those rough and tumble really good kids. We both loved metal, and even though he wasn’t in hospital too much growing up, he was one of those kids that left an impression. I was so surprised when Matty contacted me earlier this year. If I’m truthful, I’m always a little taken aback when a CF’er I haven’t heard from in a long time writes me or shows up at a funeral because the simple and brutal truth is that they’ve died – I just haven’t heard about it. The CF grapevine doesn’t work like it once did, because there’s only few of ‘old skool’ CF’ers left.

Matty’s partner Racheal had just given birth to a healthy son – he was a Dad! Matty sent me photos of him and his beautiful baby boy, and I cried tears of joy that Matty was still alive and that he now had a beautiful little family of his own. He’d been assessed for a double lung transplant, and while he had all the normal fears, he knew it was the best decision he could make for his young family.

Last week, Matty received his transplant but he suffered catastrophic complications shortly after and he died over the weekend. He leaves behind a shocked and bereft family and friends, and my beautiful friend Kate – also a double lung transplant recipient – has created a gofundme page. Ironically, Kate and I have rolled our eyes in the past at the entitlement of people who use crowdfunding for things that aren’t for something legitimate like medical expenses.

The reality is, Matty’s family need financial help as they plan his funeral, and to prepare for a future without their son, partner, father, brother and friend. I can’t even imagine having to face such a thing. If a potato salad can raise $55K on Kickstarter (I’m not even joking), then we can do better than $20K for real people. So I guess this is where I share the link. I’d be ever so grateful if you or anyone you know could donate to this worthy cause – https://www.gofundme.com/please-help-towards-jakes-future

Matty, you will be so desperately missed. Your memory will be kept alive for your little boy by everyone who was lucky enough to know you.

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Jake’s ‘birth day’
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Matty, with Jake and a PICC line in his arm to administer intravenous antibiotics.
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Rachael, Jake and Matty
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Father and son …

The birth of my fourth decade

I’ve been thinking about my thirties. About how they started, and how they’re about to end. Ten years ago at my thirtieth birthday party, I was bloated from massive doses of steroids I’d had to have earlier in the year due to a serious respiratory virus. I was puffy faced and swollen, and going into my third decade, I was fat (for me, anyway. Or at least my face looked like a puffer fish).

For what it’s worth, I haven’t exactly loved my thirties. They started off on a bad note when I had to be treated for the early stages of vulvar cancer. My oncology team and I tried  to keep the cancer at bay with a topical chemotherapy, which would leave my vagina looking like I’d sat on a cheese grater and ridden it like a champ. I know – so glam.

In November 2007, I underwent surgery so the cancer didn’t travel into my lymph nodes and metastasise, which would have afforded me protracted suffering and death, and while the surgery saved my life, it left me teetering on the brink of death. I had a poo bag and a broken vagina pieced together with skin grafts, and I honestly don’t know how I got through three months of non-stop shit explosions and blistered skin from a stoma that refused to stick, but I did (thanks for all the late night laundry, Mum).

When I was 31, I got myself into a destructive relationship, and my boundaries with men were still pretty woeful when in my mid-thirties, a person I was seeing got into a fight and called me for help. I cleaned and dressed his wounds, after which he pissed in my bed. The next morning, he helped me move the mattress out onto my balcony, but left before I had to bring it in myself. I was on home IV’s at the time, and nearly popped my CV line out of my jugular.

My response was an almost ethereal calm, simply because not much fazes me. I thought, ‘hey, that’s ok – mattresses can be replaced.’ WHAT THE FUCKING FUCK, CARLY?! My response now would be entirely different, and for all intents and purposes, he should have bought me a new mattress (he didn’t). Now, I’d kick him to the kerb without a second thought, block his number, and never connect with him again. It was only then that a close friend began to teach me about boundaries, self-worth and self-respect. This friend has also helped me plug in to my intuition – something I’d struggled to get in tune with before. There was other stuff. My sister’s divorce and its ongoing aftermath has been confounding in its cruelty and acrimony.

All in all, I’ve learned my most powerful and empowering lessons in my third decade. Yes, my thirties saw its share of death, but through this came unexpected gifts. I discovered my true purpose and passion with wanting to care and advocate for the dying. I went to my first Spiritual Care Australia conference which opened up the world of hospital chaplaincy (I call it spiritual care), and in 2015, I graduated from my first unit of Clinical Pastoral Education. My CPE training was one of the most rewarding learning experiences of my life, and I’m now working at the city’s biggest trauma centre as their only non-religious spiritual carer – such a privilege and so incredibly humbling (if you ever want a lesson in humility, go and sit with people at the bedside, and listen). In 2016, I was asked to be on the organising committee for the 2017 Spiritual Care Australia conference, and I’ve been made to feel welcome by all faith groups.

In 2014, I was invited to speak at TEDx Brisbane where I  shared my story and my hopes for how we can do death differently and how we must do death differently. After seventeen years, I discovered who my donor is/was after realising that I needed to know about her, even though I’ve had information about her since just after my transplant.

I have been lucky enough to work and learn with the best people in the death care industry, I did my first Vipassana, let go of my survivors guilt, and got clean. I’ve been clean for three years, and honestly can’t think of anything worse than taking opiates again. In fact, you’d have to render me unconscious to get any narcotic into my system.

On Christmas Eve, I was accepted into the Karuna Hospice Palliative Care Support Volunteer training program – an intensive I’ve been dreaming of doing for many years. It’s as though the world is opening up for me, and for that I sit in a space of deep gratitude. Transplanniversaries came and went, but never without much introspection and indebtedness.

I discovered what I needed to keep and what I needed to let go. I realised that just because I have a history with a person, that it doesn’t mean I have a present or a future with them. I know what ingredients help make me my best self, and I’m clear in my purpose. I’m settled, happy, and in love with giving zero fucks about what anyone may or may not think of me.

So why is that? It’s because I’m done with not being and living as my authentic, no-bullshit self. I was done with that a time ago, but as 2016 and this decade comes to a close, having lived with so much uncertainty, I am certain of one thing – life is beautiful, and all that matters in the end is the love you share and the love you get.

My wish for you, going into 2017, is that you embrace the simple things, because these too have been my greatest lessons. Go and hug trees, howl at the moon naked, walk in the rain (naked again), take less and give more, love yourself, treat others with kindness and suspend your judgment. Own your shit, be accountable, tread lightly upon the earth, and as my dear friend Andy who died last month waiting for a transplant would say, ‘don’t be a cunt’. Life is short – paint it your shade of spectacular.

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When you get punched in the face

A couple of years after my transplant, I was assaulted. Had the shit beaten out of me. What made it even more shameful, was that I was beaten up by a girl. Of course this rationale has evolved with the gradual unfurling of my life and hard won wisdom, so I know that it doesn’t matter who hits you. Girl, boy, woman, man – it’s violence and it should never be tolerated.

So here’s some back story: I had been at a Cystic Fibrosis luncheon (as was tradition) and I admit that I was intoxicated during the day, but stopped drinking early afternoon. Around dusk, my friends and I hopped on a ferry from Southbank to go to a friends place at New Farm. I was feeling clear headed and had been drinking water for quite a few hours.

When we arrived, there were quite a few people we didn’t know, so we sat around in a circle (old hippie habits die hard), and I got to talking to a guy about where we had been. He seemed friendly – long red dreads, not quite a hippie, but more of what we would call a ‘feral’ (terrible term, I know, but it was a term nonetheless). I explained that I had CF, to which he responded, ‘you look really well,’ so I told him that I had had a transplant and he commented that I probably had some wicked scars.

We engaged for about twenty minutes, but things started to get a little strange and off topic, so I excused myself and walked away. This man’s wife who I thought looked really friendly, for she too had long dreads and was wearing Doc Martens which transported me back to my youth – had seen us talking, and as she turned towards me, a storm rose in her face and she asked me what I was looking at. I replied, ‘absolutely nothing’, picked up some grated cheese that was on a table with some other snacks, and threw it behind me as I walked away. I wasn’t aiming for her, but it was her perception that I was.

The next thing I remember, she was on me and I was up against an old car; punching me in the chest and ribs, and then grabbing my head and smashing it into the car window. My first thought was to protect my face – I was wearing glasses after all. Then a horrific thought crossed my mind – that my head was going to be smashed through the glass (old glass that shatters, NOT safety glass that sticks together), so I just took it.

She smashed my head into the window so hard that my glasses flew off, she lifted me up against the car so that I lost my shoes, and my friends were behind her screaming to leave me be. The thing is, she was Amazonian when I am not, and she just kept the blows coming. Her husband eventually dragged her off, but she was trying kick me in the face. I copped a boot to the chest which took the wind out of me, and I stumbled away while they got in their car and took off. Then they came back. After about fifteen minutes (we were still waiting for a taxi at this point to go to the police station), I saw her get out of the car, light a cigarette and walk back to the party as though nothing had happened. She was so oddly blissed out and mellow, and my educated guess was that she had had a hit of heroin or something similar which had calmed her down.

I don’t fight dirty. Never have, never will. When I was going in high school, my Dad taught me how to box; how to protect myself even though (or because of) I was going to an all girls school. And so that night, I didn’t fight back. I went into protection mode. If I threw some grated cheese behind me that she mistook for deliberate hostility, making her believe it was ok to beat me up, then that’s on her.

My dear friend M (who happened to be a lawyer at the time) and I went to Police Headquarters and I wrote down a preliminary statement. My memory was pretty fresh, but I was in shock, so the statement was brought up in court as being ‘contradictory’ to my official statement that I made about later that week.

When I got home, my Mum took photographs of the bloodied scratches and bruises across my chest and neck. Even more concerning was that I had had a central line removed just two days before and she had scratched the scab off it and drawn blood with her fingernails. Later that night, I struggled to sleep because the attack kept playing like movie reel in my head – a punch here, a kick there.

When I tried to get out of bed the next day, my whole body ached like I had a really bad flu, so I called the transplant unit and they said to come in straight away – I needed to be checked out, x-rayed and have bloods taken. I could barely move and because this girl was possibly a drug addict, I had to be tested for HIV and Hepatitis because as I mentioned earlier, she had scratched the scab off my CV line and drawn blood. I had fourteen x-rays, was checked out by a physiotherapist and then I went home to rest.

It felt like an age waiting for my blood results to come back, and I admit that I was feeling pretty distressed. When they came back clear, my doctor, family and I were relieved to say the least.

The worst thing about the whole situation was that the woman who assaulted me was in the care industry. She was an occupational therapist at a major metropolitan hospital and  she knew that I had had a transplant and therefore was a ‘soft’ and vulnerable target. My transplant consultant wanted her struck off immediately, but somehow that didn’t transpire.

Court was brutal and unforgiving. I felt so terribly guilty that my friends had to testify, but I was determined that this person was to be accountable for her actions. Her husband arrived at court wearing no shoes and repeatedly walked up to the courtroom to listen to proceedings when he shouldn’t have. The lovely detective who took my official statement didn’t think this was right, so he was given a warning to stay away or go elsewhere.

When I had to get up on the stand, I had strips torn off me by her lawyer (I still remember his name), and he manipulated what had happened on the night, where I was a cheese-throwing bitch who provoked the attack. I know that’s what lawyers are supposed to do, but a few minutes into the cross-examination, I was a bawling mess. In fact, he was very capable at making me feel like shit, but I was lucky enough to have the states top DPP who representing me. I also had a wonderful and compassionate detective who actually gave a shit about what had happened. My lawyer made a very strong argument that she was a violent offender, and after an arduous day of court, Mum and I hopped on a train, but as we were nearing home, we were called back.

I had to get on the stand again, and to cut a long story short, the woman who assaulted me was found guilty of grievous bodily harm which meant that she had to pay me a reasonable sum of money and complete 200 hours of community service. What upset and disappointed me the most, was that there was no conviction recorded. In fact, I would have happily done away with the money in place of a conviction. The fact that this person was an occupational therapist working with vulnerable people and who possibly had a drug problem disturbed me greatly.

For the first few months after the attack, I was constantly checking my back, especially when I was at uni. I didn’t feel safe and that really grated me. It lowered my self-confidence and even though I was already hyper-aware of my surroundings after being with my Mum when two piss poor excuses of men who mugged her tried to run her over in a carpark when I was fourteen, I became a little paranoid for a few months and was always at the ready to fight. My nerves were shot, and even someone running behind me was enough to set me off and put me into fight or flight mode – mostly fight mode where my  fists would curl instinctively until the perceived threat had passed.

Looking back, I was so incredibly naive to think that these people were good people. I’ve always looked for the positive in everyone I meet, and while it was a hard lesson to learn, I refused to let my assault dictate who I engaged with, and soon I was feeling more positive about interacting with humans I did not know – I was just a little more selective.

The entire process, from the assault to the court case, exhausted me and my only real escape was studying for my creating writing degree, which ripped me back to my youth where study was my escape from all of the death and suffering that was all around me on an almost daily basis when I was in hospital. Friends deteriorating before my eyes, friends dying, trying to help said dying friends die a more comfortable death, seeing kids pinned down so doctors could shove in an IV or a nasal-gastric tube for feeding. The word brutal  comes to mind again.

I rarely think about my assault, but something a couple of days ago triggered a surge of memories, and I wanted to write about (and share) what happened. Violence is never the answer, and instead of being embarrassed about not fighting back, I’m proud that I protected myself as best I could and that I walked away with grace and my dignity intact.

You may ask why I didn’t just let it go and not report it to the police. I was always going to report it to police because I  was raised to believe that everyone needs to be responsible and accountable for their actions. I found out a few years later that her marriage ended. Did that make me feel good? Temporarily, yes. Now? Not so much. Did I want something awful to happen to her after she assaulted me? Yes. But then I learned that when you dig a grave for one person, you need to dig another for yourself, and that held no appeal for me. Do I hope that she’s now ok? After my own addiction issues, yes. More than ever. I forgave her a long ago, but I will never forget the physical, emotional and spiritual pain she put me through. Spiritual pain? Well, that’s another blog post entirely …

 

 

I am an addict

I posted a rant on my chasing away salt water page earlier today, much of which I’ve included in this piece. It involves the Cystic Fibrosis community – my community, if you will – and my burning question was this: when will people start taking responsibility for their lives? Why are there GoFundMe pages being created to ask for money so that CF’ers can reap the rewards for doing nothing? You are NOT a special fucking snowflake as the late, great Stella Young would say. You can listen to her fuck off amazing TEDx talk here. Her inspiration porn and snowflake theory applies to the entire illness and disability community. No one is exempt #sorrynotsorry.

I see CF’ers who are diabetic with failing kidneys poisoning their bodies by drinking Coke and eating crap for breakfast, lunch and dinner; pumping themselves full of insulin because they’re ‘addicted to sugar’. Trust me – there are worse things to be addicted to and this is where I share my ultimate shame story for the very first time.

MY NAME IS CARLY-JAY AND I AM AN ADDICT.

As some of you may know, I’ve been addicted to opiates over the years due to the pitfalls of CF, transplant and cancer – morphine, pethidine, oxycontin and more. I mentioned my on/off struggle with being addicted to drugs in my TEDx talk, but when I gave that talk, I had been keeping a far deeper secret I’ve not had the courage to write about until now because of the deep shame that feels like burning kindling in my marrow. Seriously – that’s how it feels. 

In fact, the reason I had to use a lectern during my TEDx talk was because my brain hadn’t recovered from the damage done from the previous two years of drug (ab)use and as such, I felt like an abject failure. I could not learn my eighteen minute speech in the three weeks I had been allotted, and for me this was mortifying. But once I walked out on that stage, I was fine; nerves a distant memory. I owe everlasting gratitude to the very empathetic Lisa Watts from TEDx Brisbane after crying my way through a conversation as to why my brain wouldn’t suck my speech up like the sponge it had once been.

I am well aware that I have paid my donor and her family the ultimate disrespect by getting addicted to drugs. And not just any drugs – schedule 8 controlled drugs as they’re called in Australia. I thought that because I was on prescription drugs and I wasn’t drug seeking on the streets that I was safe; that I wasn’t a drug addict. Except I was.

In fact, I remember my first hit of Omnopon in 1994 after I’d had surgery for endometriosis. It just so happens that the first love of my life was the one who injected me (in a hospital setting, of course), and that’s when the first flush of addiction bloomed. I unknowingly had sent myself to sea in a sinking ship. Marcello said I’d feel a little giddy, but the accompanying rush of ecstasy that washed over me as I sunk into my bed, yet rising into the air at the same time in one beautiful, sweeping motion is something I’ve never forgotten. In 1996, I became addicted to IV pethidine after complications with surgery, needing more and more every day until my doctors brought down my dose enough for me to get home. Funnily enough, I didn’t miss it and got on with life.

It was following my transplant when the seeds of addiction really came alive. My bones were honeycombed from osteoporosis and as such would not heal. My sternum refused to knit back together, and every time I rolled over in bed my chest bones would concertina and I would hear and feel them pop. Up until I had my cancer surgery in 2007, I had never experienced such pain as when my epidural was removed on day five post-transplant. It was as though someone had poured fuel all over my chest and set it alight. When I was discharged, I’d drink my morphine straight out of the bottle like an alcoholic would with whiskey.

After six months, my transplant doctor Scott Bell and my surgeon, Robert Tam sat me down and told me I was addicted to morphine. The first thing I felt was relief, and my first thought was, ‘no shit, Sherlock’. After agreeing to their suggested two week inpatient detox, I went home, poured my morphine down the sink and went cold turkey. I pissed the bed (and the rest), vomited, sweated like a beast in Hades, and felt like I’d been thrown from my skin. When you’re coming down, you get to a point where you feel like you’re climbing out of your own skin and so you actually try. And then, when you’re back in the world of the living, you emerge like a calf being born. Replete with an inevitably messy start, you find your feet, feeling fragile and a little lost. But as the days go on, you get stronger and a little more fearless. On day four, I began to feel human, and for now at least, the ride was over. I had my life back.

My addiction was most out of control when I wasn’t living with my parents. When you have nobody to be accountable to, you can just shoot up and flake out. The second you see that flash of blood in the syringe, you know you’re about to enter heaven, yet you go nowhere. It is like taking the deepest of breaths. That flash of red, so ironically the same colour as the flower it comes from. You feel totally dissociated and disconnected from everything and everyone, but when you’re high you’re hyper-sensitive to other people’s emotions. You laugh and you cry with people and then suddenly, the high has gone and you’re not sure where to go or what to do apart from wanting another hit, although for a few years I went without pain killers altogether. Why? Because I can.

But then 2003 came reeling into me, and sometimes restless rivers run deep. By 2004 I was back in the throes of addiction and I did ridiculous things like inject pethidine and morphine directly into my port-a-cath. That shit was going straight to my heart. Colour me surprised, but I’m lucky that I didn’t stop breathing. Because I’d built up such a tolerance to these kinds of drugs over the years, I reason that that is the only way I’ve survived such reckless behaviour. I have punished myself enough now knowing that I risked my life every day.

2004 came and went and I stayed clean until I was diagnosed with my pre-cancer on my vulva. Yes, my vulva. In order to get the pre-cancer under control, I had to use a drug called Efudix – a topical chemotherapy ointment which is supposed to burn the cancer away. I was on a potent mix of narcotics, but for good reason. My gynaecological oncologist (broken cunt doctor) couldn’t quite believe the doses I could tolerate, but when you have strips of skin hanging off and peeling away from your vulva, you need ALL THE DRUGS.

When Efudix was off the menu as a treatment, I underwent a radical vulvectomy which very nearly killed me. For pain relief, I had an epidural and was on ketamine and morphine, yet the pain team still could not get my pain under control. As I speak about in my TEDx talk, my Dad arrived at the hospital one morning to find me drooling like a vegetable and essentially non-responsive. Not long after I began have tonic clonic (grand mal) seizures and was rushed to ICU. If it were not for my father calling my lung transplant consultant Peter Hopkins, I’d be dead.

Pete told the doctors to rip me off all of the pain medication, which they did. As a result, I went into acute narcotic withdrawal where my body would thrash around the bed – and despite being in a coma – my system was fighting that sudden absence of opiates. To cut a long story short, I survived, had to learn to walk, talk, feed myself and had to deal with a poo bag. I was drug free and wasn’t even taking paracetamol, despite having a few ‘oxies’ left over from before my surgery which I made quick work of in 2008 when I was in the relationship from hell. The ex in question also happened to have a penchant for drugs and ran me dry, which was fine. I didn’t want to be on anything and was happily clean.

In 2013, I’d been back on narcotics for maybe two years. I was going nowhere fast and like any addict, I was always needing more. I would take drugs when I was happy, I would take them when I was sad and I would take them when I was indifferent. I doctor shopped, lied, and had no one else to blame except myself.

There were times when I was using where I had taken far too much because I hadn’t hit that high fast enough. My breathing would become laboured and just to get some perspective, after my cancer surgery I recall having such massive quantities of ketamine, morphine and other drugs that I would often get down to four to six breaths a minute. I remember waking up with a group of doctors and nurses surrounding my bed saying that I’d had ‘a little trouble with my breathing’. They had in fact pulled me back from the brink with a drug called Narcan which is what you see paramedics using on television with people who have needles stuck in their arms (or in Pulp Fiction. That big breath that Uma takes once she’s stabbed through the chest? Bullshit. Sorry to ruin the illusion).

In 2013, I was shaking the hand of death far too often, yet I still persevered with taking as many drugs as I could. I was in Barcaldine when I realised I was in trouble. I was in the middle of nowhere and only had a minute supply of drugs left for the duration of my stay, so I did what any self-serving addict would do and began rationing them out in the hope that my restless legs, vomiting and night sweats would settle down long enough for me to get back to Brisbane to replenish my supply . One of my closest friends and her husband spent some time at my friend’s cattle station with me and while I knew that Nic knew, I said nothing because I wasn’t ready to get clean and as is typical, I refused to ask for help. Nic said later she knew I was in the throes of addiction, but there was nothing she could do until I was ready. I had to be ready, but I needed help like it was yesterday.

A few weeks after I returned to Brisbane, I was having a very casual conversation with my Mum and for some reason I broke down. She asked what was wrong and while she was in the spices section of Coles, I told her that I was addicted again. She lovingly said that she would get me help and that we would get through it. Why we? Because my family and I are a formidable team – my Mum, my Dad, and my sister always offer me a soft place to land.

This confessional does not make me brave. I am not inspiring. I am not that snowflake that so many people wish to be or use as as excuse to be an asshole. I am human and humans are not infallible. I had to earn back the trust and respect of my family which is what hurt the most. My Dad could not believe that I had gambled so thoughtlessly with my life. He said he was disappointed – possibly the most most biting thing anyone has ever said to me. He wasn’t upset, he was disappointed. I cried, said I was sorry, but that wasn’t enough. I am still so, so sorry and am in tears as I write this. You should never have to earn back the trust of your family, but that was something I was so resolute about doing. My sister was incredibly supportive as were the literal handful of friends I told. They let me get on with my recovery, but were there to back me and I can’t thank them enough.

I’ve been clean for two years and while I’ve always maintained I’ve been compliant with my treatment (taking medication, regular check ups, eating well, exercise) I did the unthinkable – I gambled with my life that I’ve nearly lost so many times through no fault of my own, yet here I was throwing it away with every pill I swallowed and every (clean, single use) needle I was shoving into my skin. I only ever took drugs when I was alone.

In regards to the illness and disability community, I see people who are non-compliant with treatment and medication after transplant and other life preserving procedures. Over the years, I’ve seen transplant recipients start smoking again after their lives have been saved and hundreds of thousands of dollars have been spent to keep them alive. Just like my drug addiction, how disrespectful is that to your donor, their family and your medical team? The thing is, I got help because I asked for it. I went to an addiction specialist who put me on opiate antagonist treatment and I’m happy to say that I’m going to be off it for good before Christmas. I saw a great therapist, but after about three sessions my psychologist said I was too well adjusted to keep seeing him. We both believed that I was in a safe space and would not use again. And I haven’t. The only narcotics I’ve had have been when I’ve needed a central line placed in my jugular for IV antibiotics (they can sting and bruise a little like a motherfucker).

So what brought on this confession? This morning as I wrote about Cystic Fibrosis and suffering in general not being a competition, and about the ‘hierarchy of illness’ that has been created over the years, I sensed that I needed to own my shit because I was telling other people to do just that. You have a choice. It’s called being pro-active instead of being a victim. Whether you’ve had a hard life or not, there are many who have had it far tougher than you, but again – it’s not a competition of who is sicker than who, who is suffering more, or who is the most hard done by. If you can get out of your own head and ego, you’ll see that we are surrounded by suffering and we (you) have it relatively easy when it comes to illness. We live in a first world country, have world class medical services and welfare. For fuck’s sake, our transplants are FREE. In the United States, you have to basically crowd fund and hope for the best if your health takes a turn for the worse.

Having an illness or a disability doesn’t entitle you to have a Facebook or GoFundMe page where you’re essentially begging for money, ‘stuff’ and ‘experiences’ like hot laps and swimming with dolphins being given to you for just existing (and shame on you for going to Seaworld. Animals in captivity is cruel. Go and watch Blackfish).

So you – yeah you. Do you actually believe that the world owes you? Because it doesn’t. Life owes you nothing. But you owe life EVERYTHING, so stop being a self-entitled twat. Get a job, get your shit together, get an education or better your skills, get help if you need it like I did (all you have to do is ask), stop the victim blaming, lose the ego and get real. Be accountable and set a good example.

Drugs are a scourge and I know that I will never use again. But how can I be certain? The proof is in the pudding. I’ve achieved so much since being clean. I’ve found my purpose and I am bloody good at what I do. I’ve worked for the first time in years, spoken at TEDx and other events, my writing has been published widely, I’ve been churning out my memoir, poetry and I’m close to having a first draft of a novel I am thrilled with. I’ve made new and lasting friendships with my involvement in palliative care, my death midwifery and the death cafes I host, I started a Masters degree in Spiritual Care and have done my first unit of Clinical Pastoral Education so I could become a secular hospital chaplain. Maybe we’re all wounded healers to some degree.

So many opportunities have presented themselves and I’ve been in the right head space to take full advantage of that. Most importantly, I’ve had no cravings for drugs over the last two years because life is enough. I am enough. To be able to write and say that to people is something I’m proud of. Again, it is not so much that I am brave or inspiring. I’m just a human who wants to be a good person – to love and be there for my family and friends, to write like a motherfucker, to care for the sick and dying and to love and be loved. Life really can be that beautifully simple.


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Getting mouthy

Every morning of late, I stir in my bed until I feel that familiar pull on the roof of my mouth. Has someone thrown an ashtray in there? ‘What is this?’, I hiss Bellatrix Lestrange style, and with a swollen tongue and the inside of my mouth feeling akin to the skin of a cat (I’m more of a dog person truth be told), I lope to the bathroom where I douse my mouth with water while cursing into the bathroom sink, ‘this is fucked.’ Spending quality time with my head in a sink or a toilet helps to keep my thrilling life real. So just like I owned the word ‘vulva’ in my TEDx talk, I’m going to own ‘thrush’. I’m full of it. In my mouth, anyway. The treatment I had for that rabid sinus infection/sepsis has totally fucked ruined the natural balance of my system.

It could be worse. I could have it elsewhere (I don’t), but OH, MY MOUTH. It feels as though its covered in another skin. A skin I need to shed. It actually hurts and most days, my mouth bleeds. I have red welts in the corners of my lips, which coupled with my pallid skin make me look decidedly ill. The main risk factors for thrush are the use of antibiotics, diabetes, corticosteroids and a dry mouth. As usual, I have all sides covered and in spades. Antibiotics (two weeks of IV’s) – tick. Diabetes (infection markers and a steroid pulse have made my sugars go berserk) – tick. Corticosteroids (just had a pulse) – tick. Dry mouth (from anti-rejection medication) – tick.

TICK TICK TICK TICK.

It’s incredible what antibiotics can do to your system. They heal and they harm. My skin – usually clear, glowing and baby soft  – is beyond dry and is making my body ache. It is itchy and I have little raised weals peppering my arms and legs. I have a whole bunch of new skin tags on my neck that I want to scratch off and I have what feels like acne on my chin, which feels very odd because I never, ever had it at school and I get maybe one zit a year (something had to go my way). I don’t feel like myself. At all. The right side of neck is sore from where my CV line was,  thanks to the doctor who basically performed CPR on my neck when he forced the catheter in. I have a giant haematoma, which is a solid swelling of clotted blood under the tissues where the catheter was so roughly inserted, my skin from where the dressing was has blistered and is nicely inflamed, and I’m waking up during the night in pain. Sexy. Oh, yes.

So today I bought up big at the green grocer and the health food shop. Oranges, apples, celery, zucchini, lemons and ginger. I’m slugging back lemon, ginger and honey water (it’s not tea. Anyone who says it’s tea is bullshitting you) like a thirsty unicorn; I bought the strongest zinc supplement I could find, and next week I’m going to see a naturopath who will try and bring my body back to some sort of pre-sepsis balance. Back to unremarkable. Because unremarkable is where I’m comfortable at.

Sometimes the aftermath of an infection can be worse than the infection itself, and while I’m not saying that this is true now, I’d really love to celebrate my seventeenth Transplanniversary thrush free. So – who wants a Transplanniversary pash? 😛

The good, the bad and whatever else happens

Histrionics aside, my body is losing against this infection. I refuse to say ‘losing the fight’ because I have an uncomfortable relationship with the militarisation of illness and death. But no matter what I put into my body, ‘it is winning’,  as my doctor said this morning. He also wanted to re-admit me back into hospital, but I asked – begged – for two days grace. I now realise that was a mistake, so I’m returning as an inpatient tomorrow morning for whatever they can throw at me. More intravenous antibiotics and maybe steroids. Drugs that are going to make me even sicker. Drugs that will make my body hurt more than it already is.*

After coming home on Friday, I had what can only be described as a miserable weekend, and if I’m honest with myself, I’ve not improved a skerrick. If anything, I’m worse. Not having the energy to go for a walk, let alone drive, my Dad delivered some supplies to me yesterday and was worried about how I looked. I was very pale; a little grey. Across the weekend, there was nausea, shocking headaches, dirreahea (so hot, I know), rigours/fevers and I struggled to walk to the bathroom or eat. I finally ate on Sunday night. Carbed up. Lots of pasta. Late yesterday, I mustered the energy to watch Harry Potter and the Order of the Phoenix which I’ve had since I’ve been home, but I just haven’t had the mental capacity to concentrate. Last night I watched Dumbledore die in the Half-Blood Prince. Snape, you cunt. I was too tired to even be bereft about his demise.

So why did I ask for two days grace? It’s simple. I have an event I’m running on Saturday called ‘Dying to Know Day’ and I don’t want to let anyone down. DTKD is all about creating death literacy in the community and getting people ‘death aware’, thanks to an amazing initiative by The Groundswell Project. Just as I was getting ready to cancel the event, my great mate and colleague Bruce – who did a brilliant job as celebrant at my grandmothers funeral back in June – has oh, so kindly offered to step in, so not all is lost. I’ll be able to get to the event, but I just won’t be my usual hyperactive self. Because talking about death and helping make people feel empowered makes me feel alive. Oh, yes it does.

So amongst all this (what I perceive as) bad stuff, I’ve been blessed to be on Baxter bottles (say that five times fast), which saves me from having to scrub up, draw my antibiotics up three times a day and then push them in a collection of syringes, which takes about an hour for each dose. Instead, I hook these babies up to my CV line (the neck jewellery I’m desperately trying to not accessorise, because a quad lumen CV line is ENOUGH), and the balloons within slowly deflate over a twenty-four period. If I didn’t have the Baxter’s, I would have had to stay in hospital because my fatigue is so beyond what I thought it was going to be. So this is my daily set up. Breakfast. Grubs up …

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A late dinner ….

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The balloon in the bottles shrinks over twenty-fours so I get a constant supply of the antibiotic. So flippin’ clever …

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My woollen backpack. Attached to me except when I’m sleeping. Which was a lot over the weekend …

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After my appointment today, Mum took me to the book store where they had a copy of the Deathly Hallows waiting for me (thank you, universe). Then we had some lunch (thanks Stu at Avid for the pumpkin and ginger soup), and then to a couple of other places where I saw other various favourite people until I was ready to collapse. Then I came home and did LAUNDRY (it really is the small stuff).

And so, I have this message for the universe …

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*I need a massage.