Tag: memoir

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 …

 

 

The power of choice

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Happy Birthday, M

For M.E.B


We became another death

(the fulfilment of my internship).

Like a false syncope,

my grief would not let me claim you.



You came to me with bleeding gums and a dent in your jaw,

your broken gait like a barber cutting through

walls of plasticine with blunt scissors.

Bruised pride; your face a field of stubble I so loved jiving on my skin.

But first …



you were an uncertain algorithm of desire –

because you were never going to want me the way I wanted you.

Except, on a summer’s day, under umlauts of clouds, close to the border,

we pushed a kiss right through our chests like a bullet.

I was yours and you were mine and before we came up for air,

the earth had spun off its axis.



Purling into webs of light –

the softness of your cupped hands under my sunburned chin as we

tasted each other for the first time.

As salt danced across our skin, I ploughed my fingers through your hair

as clouds climbed behind us, then sunk with the sun like sabbath.



We cut our teeth on summer.

Sticky and wet like puppets of nature.

A curtain of devotion and great folly –

I grew attached to your shadow.

I’d fall off our bed of sin as you made me come to Bach,

and you would tell me stories of how you skulked up and down Cavill mall,

devout in your pilgrimage to find me on that first night at Schoolies.

You told me you would cry as you watched me sleep;

my childishly freckled cheek hemmed in by swathes of blonde hair.

You would wash your hands with such care in the darkness

(I liked to watch your panoptic palms somersault under tendrils of water)



You would drive along the rivers reach looking for me.

Once, I saw you.

I ran as fast as my body could with bleeding lungs,

but you never saw me.

I was jealous of the wind with its fingers in your hair.



Climbing lovingly into winter bones,

we knitted our bodies into an impenetrable pod where no one could touch us.

We shunned the world with aching hips and salty flesh

stuffing our mouths full, speaking a language only we knew –

believing ‘there is nothing else worth living for other than this’. You.



But I heard church bells pealing from promises that would bleed;

fistulas of memory fractured a fall and I began barking time;

howling spoonfuls of dirt into your mouth

your perfect fucking mouth

always open for mine;

a receptacle of love and all that was good in our world.

You tried.

You were unmoving in arresting us in that space as I jettisoned the indifference,

but we rolled away from each other as old mountains do,

and I began to not love us.



I garrotted you,

throwing you from your skin;

bones akimbo to the wind,

leaving a frayed man like a barometer of truth.

Fall in, fall out.

With the biting sick that bored into my body,

you were gone.



You never got to hear my new voice

or sweep the pads of your fingers over my new scars.

I can’t sing anymore, but my hair is long just as it was that first night you saw me

shuffling across blue linoleum in dimmed hospital corridors.

(I go out walking, after midnight, in the moonlight, just like we used to do.

I’m always walking after midnight, searching for you) 



Seeking out the ground with eyes I put to bed so many years ago,

I would give you my grace (or cleave the moon in two)

but you will not let me.

So I press my fingers into the rivulets of my palms

knowing we will meet when the streets glow in their silence.

Throbbing asphalt still hot from the burning day –

just like our first days of warm hands and cold feet.



Like a splintered shard of shrapnel that will always itch under my skin,

I will always be that woman who loves you.


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‘think of me when you sleep,

warm heart, cold feet.

In your dreams we will meet, 

together soft and deep.

Wish I could be there with you now,

all my love and desire. 

I think of you in despair

oh, when will I meet you there?

Not long, one more sleep,

think of me – warm heart, cold feet.’

– M.E.B 1995

 

The night I lived again: part two

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

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

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

Carly: 1

Nurse Ratched: 0

You do silly things when you’re about to die like putting vomit bowls on your head.

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

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

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

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

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

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

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

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

Here are a few of Alicia’s brilliant photographs while I was having my transplant. I would encourage you to click on these photos so you can see the more minute details. Below, the surgeons are suturing up my clamshell cut after six hours of surgery. Little did they know that they’d have to rip their delicate embroidery apart when I had to be taken back to theatre because I was bleeding.

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Surgery

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

And so this time seventeen years ago, I was dying. I am just a few hours away from getting ‘the call’. I get a little introspective on Transplant Eve, but tonight I’m writing. Fitting  seeing as how writing has played such a big role in my survival. I’m having a quiet celebration with my folks tomorrow where we will toast my donor and her family. We will toast my heroes; so many peoples heroes.

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

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? 😛

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.

Autopsy of a marriage

Thrumming away from each other like broken mountains,

by your second year, you had been excommunicated.

Wrought by the passage of God, your clipped speech and ruddy cheeks

made it hurt to be alive.

 

Her dowry – platelets swimming under skin and a fertile womb.

Yours – a cellar of wine and an insistent mother whose teat you never could retire.

At one time you were fleshy hips and languid tongues,

begging eyes and fast of foot across the floor.

 

With a God she could never swallow, nor your stewed kicks –

pissing on tyres your watermark

only to lurch into clarion cries of cocky rapture.

Days of wine and roses capsized into nights

of swollen heads and an ugly mouth.

 

Now foreheads cowl in fury –

screaming at divorce lawyers who bathe in the blood of your children,

you’ve learnt how to torch yourself with mediators papers –

slack words spilling from the moorings of your mouth

with cataracts of guilt you will never feel.