Tag: death

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.

Tool of my trade #1 – compassionate listening

I wrote this last year sitting in Adelaide airport just after I’d attended the Spiritual Care Australia conference. The next conference is in Tasmania and I’m sad that I’m missing it, but I have a full calendar to tend to. This post concerns the value of compassionate listening and how we can serve the dying – and the living – better by really being able to hear what people are saying.

After three days of extending my practice as a spiritual carer at the Spiritual Care Australia conference in Adelaide, my vocation really is all about LISTENING. Not listening in a one-dimensional or perfunctory way, but really listening. I like to call it active or compassionate listening.

Tenzin Chodron from Karuna Hospice gave a rousing speech yesterday. The energy in the room was palpable after she lead us through a gentle meditation, and continued to enthral delegates when she spoke about her Buddhist model of spiritual care and about some of her intimate experiences with the dying. I’ve been  lucky enough to have studied under Chodron through Karuna as part of my ‘Spiritual Care with the Dying’ training, and compassionate listening is a skill I honed during my training. During both courses, the group did a listening exercise. We were partnered off where we had to actively listen for ten minutes to our partner without saying a word. No interruptions, no ‘me too’. We then swapped places so that the other person could speak.

It’s amazing how much you can really hear when you’re fully engaged with another person. Once the exercise was over, we discussed the listening activity and how it facilitated true listening, because when we think we’re listening to the person in front of us, are we ever fully engaged with that person and what they are saying? I would have to say that no, we’re not. But we can be.

From then on, whenever I have had to speak with someone as a fully engaged listener, I do a small meditation before I literally step or place myself into the conversation. This is also how I prepare when I’m about to speak with people who are sick or dying, which translates to me that there needs to be a quality of presence.

Clear the mind, set your intention and be almost hyper-attuned. I truly believe that by not listening properly we are failing the sick and dying.

It never ceases to surprise me what comes up for people who are dying. But as with speaking, there needs to be a greater respect for silence. Ofttimes, that is all the person can do until they know what they do want to speak about, or if they want to speak at all.

There are many ways in which we fail the dying. While palliative care nurses, spiritual carers, doctors and other practitioners recognise that suffering affects a person’s spirit, it is common for doctors who are not specialised in palliative care to treat people as just ‘a body in a bed.’ I’ve experienced this first hand, particular when I transitioned to an adult hospital. Everyone – patient or not – is more than the sum of their parts.

In Canberra, there is a much more holistic approach in palliative care medicine. Existential and spiritual suffering often manifests as physical pain, and I have heard stories that once this pain has been addressed, the need for morphine and other pain relief is lessened – particularly at night. This resonates with me because I’ve been to that place and I know that night time is both figuratively and literally the darkest of times where every layer of pain and suffering surfaces and is amplified tenfold. I’d be interested to know if you have had any ‘dark nights of the soul’.

As a spiritual carer, this interests me greatly. What’s more, it offers irrefutable proof that in order to fully understand other peoples pain and suffering, we must first recognise what kind of pain a person is in – emotionally, existentially, physically and spiritually. While pain relieving drugs are almost always necessary in palliative care, there’s evidence to suggest that the use of morphine and its ilk can mask spiritual pain. I have heard stories of many people who are dying who have refused pain relief so they could just BE. They wanted to experience dying in its infinite form and to be present. That takes momentous courage which the dying seem to have in spades.

The day before I flew to Adelaide for the conference, I was lucky enough to do a Death Midwifery workshop with Dr. Michael Barbato. During the workshop, Michael discussed these issues as well as quality of care, the evolution of spiritual care, and midwifeing the self, which is something I will address as another tool of my trade in another post. One of the last things Michael shared with us was a mantra for the living and the dying which I will leave you with as I sit at my desk on this early evening.

I forgive you.

I forgive me.

Bless you.

Thank you.

I love you.

New beginnings

I had some really good news that I wasn’t able to share with you until I received my acceptance letter in the post today. I’m in the latest intake of a pastoral care course I applied for last year through the Queensland Institute of Clinical Pastoral Education. My interview was about ten days ago, and it went so well that I was offered a place on the spot, so I was quite chuffed to read the letter today. I’m going to be based at one of the city’s largest trauma hospitals.

I don’t ‘belong’ or subscribe to any religion, though if pressed, I would have to say that I’m agnostic. I have my faith and my own spiritual beliefs, but this course is so far removed from being about me – the care industry rarely is. It’s really about how I can best serve people who are ill, suffering and dying, and how this course will, no doubt, extend my charter of compassion. I suppose that it’s a little about me and my experience, but I’m there to listen.

I wrote in my application that it’s never been my intention to be a counsellor, but to ‘be a person who can listen and offer emotional and spiritual support to people who may be in distress due to illness, disability or other trauma’. I once looked at studying social work, and look at it hard I did. After weighing up the pros and cons, the cons became insurmountable – the main offender being burnout.

I see pastoral care as a gentle vocation, and it’s more of a team-oriented approach with other medical professionals that I hope to one day be working closely with. Suffice to say, pastoral carers are quite low on the allied health rung in hospitals, but as I heard last year at the Spiritual Care Australia conference, the landscape of care is changing, and pastoral and spiritual carers aren’t being shunned as they once were. I heard firsthand how nurses are actively calling upon us for their patients who are in an existential or spiritual crisis, which is heartening to say the least.

It’s going to be tough, harrowing and rewarding work. I’ve been a volunteer with various charities and organisations since I was a young girl – namely Cystic Fibrosis and Queenslanders Donate, which is now DonateLife – and while I don’t see my work in pastoral care as volunteer based, the volunteering and other care work I’ve done with the sick and the dying will prove to be an invaluable foundation. Now, I’m no Mother Teresa, but I have high morals, a strong ethical constitution and tremendous expectations of myself. My belief system is one of kindness, respect, equality and compassion, and my experience with illness and death will no doubt temper the potential stress I may encounter with the training I’m about to begin.

I’m expecting to be challenged, humbled and probably brought to my knees as I learn about what it truly takes to be a great spiritual carer. Again – I’m not in the business of ‘fixing’ or rescuing people. All I want to do is comfort people when they are most in need of spiritual support; to help them navigate whatever emotionally perilous journey they may be on. Let the learning and listening begin …

Being woken at the gates of heaven

Candy in a bag –

recollections of a need

when my mind was an unswept room,

my body a husk, full of holes so thick

I thought I would leak.


Needles in my bedside drawer,

ampoules ready to be

snapped off at the yellow line –

that crisp and thrilling pop.


No greater satisfaction,

nor ever surpassed.

Then the plunge of a needle

into flesh, digging down into muscle.


The other night, my body stockpiled opiates.

Nurses artfully depressed a syringe of Narcan

to bail me out of a deep unbreathing.

Two breaths a minute – my lazy lungs.

Nurses in a U shape around my bed –

‘you’re having some trouble breathing, love.’

Hell, I was between worlds dreaming about

tangerines and the biting aroma

of vodka, parcels and angels milk.

20120510-225557.jpg

Death Cafe Brisbane – this Saturday!

I know it’s short notice, but I only bit the bullet on the weekend about curating a Death Cafe this Saturday 20th December. I’d love it if you could join us at The Three Monkeys café for coffee/chai/milkshakes and cake/nachos/pizza in West End from 2-4pm.

I want to let you know that I’ve had a couple of enquiries about whether a death café is a good idea for people who are experiencing a very recent bereavement. My short answer would be no. Some conversations may be triggers for very raw emotions, and while we’re a supportive bunch, we are not equipped with a psychologist or a grief counsellor. What the Queensland Death Care Collective can do is refer you to qualified practitioners so you can find the right counselling service for you. When you’re not feeling so raw, perhaps you can come along to the next death café, which I’m planning for February. We would love to have you join us 🙂

Learning to Die: my TEDx talk

Yesterday my TEDx talk went live on TEDx Brisbane’s YouTube channel, and I’ve had an almost overwhelming response about speaking about my life (and deaths), and my beliefs and truths about death and dying. Here it is – Learning to Die.

I’ve been bathing in the beautiful waters of Death Walking training over the last two days, the last of which is today, and being able to come together with other ‘deathies’ has been such a gift; so serendipitous in its timing. When I looked at my phone at morning tea, I couldn’t understand why I had a flurry of messages, though it soon registered when friends and strangers alike were reaching out to congratulate me. Mission accomplished! And so here it is. It’s been released to the the world, and it’s there for people to do with it as they wish.

So make yourself a cuppa or an espresso or whatever your poison is and sit down to hear what I have to say. And please – let me know what you think. Comment, share, repost. I’m feeling happy and grateful that my words can be heard should you so desire to listen, and if just one person walks away – or leaves their desk or kitchen table – a little more fluent in the language of death, then my work here is done. Peace.

I’m going to be a TEDx talker!

I have super exciting news. Yesterday, I was asked to speak at Brisbane’s TEDx event in October. In case you haven’t heard about TEDx, click here to find out what an inspiring global platform where people such as Bill Gates, Liz Gilbert, Jane Goodall and Al Gore have shared their ideas.

The 2014 speakers have been announced today on the Weekend Edition. I am equal parts excited, terrified and honoured to have been invited to speak at such an exciting event. I knew this year was going to be big, but this? I’m still pinching myself …

Am I nervous? I’d be lying if I said I wasn’t. I’m speaking alongside people like Samuel Johnson and Bob Downe (I can’t wait to do my impersonation of him to him), as well as brilliant game changing Professors and artists!

So what am I going to talk about? Life, survival, writing, death and my journey to becoming a spiritual carer. You can register for tickets here. I hope to see you there!

Here’s a likeness of how I looked when I got the phone call, except I was at home …

IMG_1280