Category: WHAT THE 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 …

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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The week that was …

Last weekend saw me help shepherd my sister out of the shadows of a broken marriage and into freedom. Freedom from years and seasons of pain and sacrifice, and freedom born out of an indelible cost to her humanity and identity as a woman. A big group of people who love her ferried her out of her grief and into her new life on Saturday night where we celebrated into the night at a swanky bar in town. Having recognised the best thing about this ending is that there is now a new beginning that awaits her. That, and I have my sister back. Back to her maiden name and back to the person she was – not the broken, shackled woman she emerged as … there’s only so much I can share. We’re all little broken and our friends and families are the glue who build us back up to who we once were. That and love, of which she has in spades.

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But just when you think you’re getting on top of one thing, the wind changes and bowls you over. I noticed that my right nostril was a little sore when we were out, but didn’t think much of it until the next morning when I woke up a little swollen across the bridge of my nose. I hazarded a guess and thought I might have cellulitis – an infection in the skin – so I called my transplant consultant and he said to pack a bag and come to clinic the next day. It was a swift response once they saw me. After blood tests, I ended up having the worlds fastest sinus CT scan and was diagnosed with having septic sinuses. So yeah, a touch of septicaemia due to a slightly diabolical sinus infection (thanks Cystic Fibrosis – you just give, give, give …) I was taken up to ICU for a central venous (CV) line to be inserted into my jugular so powerful intravenous antibiotics could be started as soon as possible so the infection wouldn’t spread to my places like my eyes or my brain. Here was my view for the afternoon. Whoever invented the heated blanket box needs a Nobel prize.

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It was tough going. The doctor who performed the procedure was determined not to use a scalpel on my ‘soft and lovely’ skin, and because he had to push in 14cm of tubing through my skin and into my jugular vein, he pushed as though he was doing CPR on my collarbone. My chest was pushed into the bed so brutally and it really hurt me (there’s only so much local anaesthetic can do). While I was waiting for a bed on the ward, intravenous vancomycin and meropenem commenced. I’m also on oral ciprofloxacin because IV cipro totally incapacitates me and tears my gut to shreds.

I was in a lot of pain from my nose as well as having a tube shoved into my chest, so I was given some pain killers for the night. And it was one of those nights where I had a nurse who just should not have gone into nursing. On Tuesday, I woke up looking like I’d been in a cage fight and I now know what it feels like to have my nose broken. It’s really quite fucking excruciating and I have a newfound respect for boxers and other sportspeople who have their faces regularly rearranged. Here I am looking a little different to what I was on Saturday night …

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So I need sinus surgery and I need it soon. The last time I had surgery,  my ENT specialist said that they were scraping the base of my skull and that removing the actual infection (the snot) was like pulling out chewing gum.

And so the week went on. Yesterday was my graduation from my pastoral care training, but I was too ill to go. My beautiful group kept me updated with photos and videos which made me feel like I was with them. I was so disappointed not being with them as we officially became hospital chaplains, but when your body shuts down you have to listen (even if it is telling you to forget about your antibiotics, get in a taxi and go to your graduation).

The universe works in remarkable ways. I’ve always found that with pain comes great beauty. Thousands of words of poetry have poured out of me and I’ve come up with a humdinger of an idea for a poem that involves water. Of course.

After coming home today, and then having to return to hospital twice, the levy finally broke. Today was tough and I’m simply worn down from pain and the onslaught of infection in my body. My white cell count is up and the gravity of the week had me drowning. I think a little piece of me broke. I can’t even do a solid shit (and won’t for at least another ten days), I got my period yesterday, the skin where my CV line is is red and angry and my belly is bruised from clexane injections to prevent blood clots, so … I took a deep breath, put Xerxes, HWV 40: IV. Largo (Ombra mai fù) on repeat, had a long, restorative shower and redressed my CV line. This is how it looks sans adhesive dressing. The four stitches are to keep the line anchored so it doesn’t tear out of my jugular. Tears are optional.

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This week has left me feeling crestfallen. I got through the Harry Potter book where Dumbledore dies and the nurses looking after me thought I was howling in pain, but it was more existential – observational even. It’s odd because I’m so used to crying with joy – not immense sadness. Out of the mire of pain comes a stockpile of words – more than I even need, so after my blue moon ritual tonight I’ll hook myself up to my IV’s, put words down – both gently and ferociously – and feel safe in the knowledge that tomorrow is a new day.

What will you do today?

This is a post I wrote on Sunday 21st February, 2010. It always brings what is truly important to the forefront of my mind.

For just over an hour yesterday, I thought I was having a stroke.
I woke with a headache, so when it didn’t abate after I had eaten, I sucked back two heart starters and some pain killers. It had been an unremarkable morning, so I crawled into bed because I had a schedule of writing planned for the afternoon. The next thing I remember was a pain like a lightning strike cracked and that my left arm was weak and tingling. My arm then turned into a piece of lead and its heaviness was beginning to supersede the ache in my head. I called my mother. I said ‘Don’t panic’ and relayed the situation to her. Then I called the paramedics and finally, my housemates stayed with me until two crews arrived. I had some slurring of my speech and a blank moment when I had trouble getting my words out, much like what happens when I’m hit with high doses of Ribavirin, an anti-viral.

Eliza jumped into bed with me and stroked my hair; my parents arrived, as did a second crew of paramedics and some basic neurological tests and observations were done before I could be transported to hospital. My blood pressure was high, but I deduced that was from the pain, and my oxygen saturations weren’t their usual 99-100%, which are the only numbers I like them to be. One of the paramedics wrapped the elastic of an oxygen mask around my head and the smell of plastic threw me back to my life pre-transplant. Masks and nasal prongs. Old familiar. It was an old familiar that had a brutality about it. I felt as though someone had taken an eggbeater to my belly and I began to feel sick.
Thankfully, that’s as familiar as it would get. I hadn’t had a stroke and was cared for by one of the the finest residents (interns) I’ve come across in the emergency department last night. He was fastidious, lovely and made me feel less frightened. Dad gave him serious props, which is … serious. I’ve never heard my father rave about a doctor that way since Pete swooped in to save my life in November 2007.

I spent the night on the neurological ward and was discharged this afternoon. Sometimes a flash flood is better than a torrent and again, I find myself questioning what is happening. By that, I mean right now and not just about me, but with you. Here are some questions. See how many you can answer truthfully …

What did you do today?

What will you do tomorrow?

Did you tell someone you loved them?

Did you say to someone that you can’t – and won’t – live without them?

Did you kiss with deliberate passion and reason?

Did you watch her sleeping?

Did you touch his forehead?

Did you laugh?

Did you cry?

Did you sing?

Did you say hello, goodbye, thank-you?

Did you say ‘I’m sorry – I couldn’t do what you asked.’

Did you say ‘you changed my life.’

Did you say all you had to say?

Did you do enough?

Did you mean it?

Did you?

Why I forgive Belle Gibson

Last night saw unprecedented measures of anger, disbelief and absolute exasperation surrounding the 60 Minutes interview with disgraced ‘wellness’ blogger and creator of The Whole Pantry empire, Belle Gibson. For once, I went against my better judgment and watched the interview and as a cancer survivor, I have a few things to say.

Firstly, I forgive you, Belle. I forgive your lies, your shameless attention seeking, your money-grubbing, your terrible attempts at plagiarism, the damage you have caused to countless cancer sufferers and survivors, and the rest.

Over the years, countless people have recoiled at my capacity to forgive, and I’m ok with that. That is their journey and this is mine. But trust me – I’ve had to dig deep within my soul to get to a place where I can give amnesty to a person who has hurt me or the people I love.

Forgiveness can be an acutely terrifying and seemingly impossible process, but I’ve found that it’s requisite to heal and move on. Forgiveness is about you, not the other person. It’s about recognising a person’s humanness. It’s about accepting that vulnerability is a package deal with being human. The only alternative to forgiveness is anger and resentment, and one must forgive in order to strengthen ones spirit. It’s taken some bloody hard work, but it’s been worth it. But there’s one very important aspect of forgiveness that people often consign to the back of their mind, so let me set the record straight: forgiveness does not mean that you have to forget, nor does it mean that you cannot maintain the rage.

As someone who has actually had cancer over a sustained period, just like Belle has claimed to have done, I came away from the interview feeling a little despondent. But after reading the litany of comments following the  dialogue, I peeled away with fury. When people paint Belle Gibson as being ‘mentally ill’, as a woman who has suffered with depression (I use the word ‘suffered’, because I truly did), I find the branding of Belle Gibson as being mentally ill really bloody insulting.

That people are throwing around a diagnosis of Münchausen syndrome (otherwise known as Factitious disorder) has riled me no end. It has rattled my cage of compassion because after hearing her trying (and she tried really hard) to rationalise her catalogue of lies, including her stories of having heart surgery, dying on the operating table (that one actually happened to me), having multiple strokes and an inventory of other self-perpetuated medical myths; lying about her age, telling Tara Brown she has two birth certificates and has had four name changes and other fictitious ammunition, there was a moment when I actually burst out laughing. If I hadn’t have laughed, I would have cried. As Brown said, that’s a hell of a lot of bad luck for such a young girl.

But then I thought about my own (real and lived) catalogue of illness, or as I call it, dis-ease. Cystic Fibrosis, double lung transplant recipient, diabetes, osteoporosis, depression, addiction, cancer, dozens of surgeries and more. Now considering I’m writing a book about my life, am I going to be offended should someone ask for direct proof in the form of my medical records? Well, thanks to the virtue of Belle Gibson and other charlatans selling their own brand of snake oil, I would expect a publisher or agent to ask for proof about my medical conditions. Is that right? No. Is it now necessary? Yes. Which appalls me.

Belle Gibson claims she had a traumatic childhood which her mother vehemently denied. Here’s the thing – people survive fucked up childhoods all the time. My own childhood was punctuated by dying and death where I lived in constant fear that my dis-ease would kill me. With C.F having killed over seventy of my friends, through the greatest of odds, I have survived. I’m a compassionate human being who wants to help others, and I’ve never felt a desire to embellish my own suffering, because the thought simply never occurred to me, and to be honest, my own suffering was enough.

People survive the unthinkable – genocide, rape, torture, violent relationships – and still, they grow into exceptional human beings with passion and purpose, determined to create change in the world. They don’t feel the need to weave a tapestry of corpulent mistruths for financial gain and communal pity. But Belle Gibson did. The thing is, I picked her as being a charlatan when a friend told me about her book and app last year. For me, her story just didn’t add up. I’ve known people with brain cancer and in most cases, they do not look the picture of health, whereas Belle always looked remarkably well and fresh faced. I also knew that it was next to impossible for brain cancer to spread to your liver, spleen, uterus and blood, and for a woman who suffered a forty minute seizure at her son’s birthday party, after which she did not go to hospital (instead going overseas not long after), my hackles went haywire. But who was I to question Australia’s wellness sweetheart? It was going to be a waiting game until Richard Gulliatt from The Australian cast serious doubts over her cancer claims after donations promised by Gibson to various charities hadn’t materialised.

Gibson manipulated the public with intent and great skill over a sustained period of time. She cultivated an empire that would ultimately be her undoing – one of lies and gross mistruths about her supposed battle with brain cancer and how she cured it by eating whole foods and engaging in alternate therapies such as coffee enemas. As she created this false empire, she made a great deal of money and inadvertently (or perhaps knowingly), lured people who actually had cancer away from evidence-based medicine, instead drawing them into her world of fantasy-based medicine and therefore death.

Perhaps she has complicity lead people to their deaths, just as Jess Ainscough did. We may never know. Ainscough touted herself as being the ‘wellness warrior’, also creating an  empire based on woo (fantasy-based medicine), and while I do not wish to speak ill of the dead, her belief in woo, such as Gerson therapy (which ultimately killed her mother who had a treatable form of breast cancer), ultimately cost Jess her life. Aincough’s fanbase will debate otherwise, but the truth is, this ‘medicine’ has no basis in reality or science. What’s just as disconcerting, is that Belle Gibson attended her funeral as a fellow ‘wellness warrior’. She mourned with Jess’s family. How must they feel?

Healthy eating and Gerson therapy was not going to cure my vulval cancer. Only surgery and the option of chemotherapy was going to save my life. Thankfully, I had world class surgeons who managed to remove all the cancer, so I didn’t need chemotherapy. By excising (cutting) all the skin away from my clitoris to my rectum, extensive skin grafting from my left thigh, as well as redirecting my bowel into an ileostomy (a poo bag), I survived. But only just. The aftermath of the surgery very nearly killed me and my family were told that I may end up in a vegetative state. That aside, I survived to see my 31st birthday. I am now 38, and had I not had the surgery, I would be long dead.

Gibson has fabricated her empire of lies for the sole purpose of gaining attention and garnering money to live an unsustainable lifestyle that she would not have enjoyed unless she had duped people into buying her ‘lifestyle’ app ‘The Whole Pantry’, followed by the publishing deal with Penguin and finally, her app appearing on the Apple watch. For me, this is unmitigated fraud masquerading as mental illness. Belle claims that she ‘cured’ her brain cancer with whole foods and alternative therapies, except that she didn’t. We all now know that she never had cancer, or any other of the medical conditions she lied about on skateboard forums and what not.

I have to ask – at what point are we not responsible for our actions? Many people would say when we no longer have the mental capacity to make safe decisions for ourselves. But does this absolve us of moral and ethical responsibility? It’s a very grey area. Belle has undoubtably harmed others by offering false promises and platitudes to the point where evidence-based therapies are called into question and oncologists are made to look like big Pharma pariahs for their trouble. The thing is, doctors take an oath when they begin practicing medicine, and we can only hope they honour it (primum non nocere, or ‘first, do no harm’). 

While Belle claims to have ‘lost everything’, I remember thinking the same thing after my cancer surgery, but I soon realised that I had come away with my life. If only Belle would come to the same realisation and tell the truth.

I do not know what will become of Belle Gibson. There is a part of me that understands the witch hunt, but I also feel an immense sense of compassion for her. Or perhaps my compassion is just misguided pity. Compassion and pity may be poles apart, but today both burn deep inside me. Does she deserve to be punished? I believe so. There are still so many unanswered questions, and after another soul rummage, I know that we may never know the truth, because Belle certainly doesn’t. Or does she? In a messy little corner of my mind, I can’t help but wonder how many people Belle has literally made sick. And what of the voiceless who can no longer speak their truth because they have died after believing her misguided and inexpert ‘advice’? People may be willing to forgive. Let us ensure they never forget.