Tag: human beings

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.

Positively spiritual

I recently saved someone’s life after intervening in a critical incident through my work as a pastoral carer. While I can’t go into details due to confidentiality reasons, after a triumvirate of serendipitous messages from the universe on this one day, I had to write about what it’s like to be at the coalface of pastoral care.

When I meet patients and introduce myself as being from pastoral care, there is often a degree of confusion. Some older patients have asked me if I’ve come to tell them about how their farm is holding up, and so when I say ‘pastoral’ care, I usually follow it up with the words ‘spiritual care’. The vast majority of my patients are not religious, but all are spiritual. Every single one of them. Many patients I speak with don’t believe they have any spiritual connection in their lives, but when you dig a little deeper and find their passion, that is where their often untapped spiritual potential lies.

While it’s not my role to make people more aware of their spirituality, when I listen to a person, I’m being a sort of healing presence. It’s my role to ensure that the person I am speaking to feels like they’re the most important person in my world at that moment in time. Inadvertently or not, my patients regale me with stories about what they’re most passionate about, and this is where the gold is. This is where the conversation leads to what is most consequential and meaningful in their life and this is where they meet their spiritual self which can be life altering.

Unfortunately, pastoral carers do not play as big a role in the framework of a multi-displinary medical team as many of us would like, in Australia at least. Social workers, dieticians, physiotherapists and occupational therapists all have a role to play in patient care, but pastoral carers are not given equal footing. For example, we  don’t write in patients charts so other members of a patients care team can see how a patient is faring from a spiritual or existential perspective. Yes, we are respected, but I’m of the opinion that it would be in the patients best interest to take our involvement one step further. For example, exploring a patients spiritual history (just as a doctor would take a medical history) would be a good start when they’re admitted to the hospital. Pastoral and spiritual care is a critical adjunct therapy and should be considered as such.

Last week when a nurse asked where I was from, I responded with ‘oh, just pastoral care’, to which another nurse said, ‘just?’ She was right. I’m not just from pastoral care. I am from pastoral care and for that I am both grateful and proud.

I have learned incalculable lessons during this journey and one that I see time and again is that pastoral carers are often the people who ‘pick up the slack’. Long after doctors have given a diagnosis or a prognosis, we are there to help pick up the pieces. As a pastoral carer, I’m there to provide a healing presence, and while doctors are more involved in patient care than ever – including spiritual care – it’s often pastoral carers who enter a patients life when they are at their most vulnerable.

It’s a prodigious feeling to know your purpose and I feel that my life (at least post-transplant) has been leading up to this point. I am many things. I am a woman, a writer, a dreamer and a do-er. I am a person who wants to make a difference and I am a woman who has trials and skirmishes with life like everyone. I am a daughter and a sister; an aunt and a friend. I am also a patient, so I have more in common with my patients than they initially realise. When I introduce myself as being from pastoral care I get a lot of people not wanting to connect because they think I’m at their bedside to convert them. That is not what I do and I tell them as such. I am often asked, ‘what are you here for?’ To listen, I say. A defining moment of learning happened when I was talking to a gentleman who asked me what I was there for. I foolishly said that I was there to help, to which he said brusquely, ‘I don’t need your help’. He was quite right. It is not my role to ‘help’ per se and I’m grateful that he put me firmly in my place. I’m not there to ‘help’. I’m there to serve, listen and be present.

Because hospital is a second home to me and the only protracted period of time I’ve spent away from the place has been post-transplant, while I’ve not forgotten – I seem to have misplaced the feeling of what it’s like to be institutionalised and in a place you don’t want to be. A place far from home. Alone. Unfamiliar and sterile surroundings. No loved ones. Strangers. And more tellingly,  strangers who are making decisions that will affect your life. Hospitals can be emotionally disarming places and while I’d like to say I’m a vision of composure when I return to hospital as an inpatient, I’m always apprehensive about what is happening and what may go wrong. Because health is an unpredictable beast. One minute you’re walking, and the next you’re in a resus bay in emergency. That’s the reality of life – it is so very delicate.

I’ve met people who have been in car crashes on their way to the airport to catch a flight to their dream destination. I’ve seen youth cut down in the prime of their lives and I’ve seen people who have lived hard lives; getting through by the skin of their teeth and who, after everything they’ve endured, including broken homes and relationships, addiction, abuse and homelessness to name a few, are facing a terminal prognosis.

Life moves at speed and horrible things can – and will – happen. But through the veil of catastrophe I see the tenacity of the human spirit. I have seen people in the worst of situations make the best of things. Because that is what humans do. We all have the capacity to turn the worst of hardship into something useful. So for all the suffering I see – and that’s what I have had the most trouble with – I see so much hope, courage and (often quiet) determination. The people I see rarely make a fuss. Like true warriors, they live with grace.

We may not be able to fix people, but each of us can be a compassionate presence. Research has found that a persons spiritual well being can aid in healing and being a patient myself I know this to be true. You can receive all the treatment in the world to ‘get better’, be it chemotherapy, surgery, antibiotics or dialysis, but to stay connected to what you find meaningful is essential to your well-being. And we all have the right to be well.

Peace first

Whenever I have a strong reaction to an event, I always question myself. Most of my regular readers will know that I don’t delve into current affairs very often, if at all. I stopped watching the news about seven months ago on the advice of one of my best friends and it freed my mind and my time. Instead of a 6pm ritual of turning on the television, I began reading, writing, dancing, listening to music or having a cuppa or a cider on my balcony. You’ll also know that I’m a lover and a fighter in equal parts. A lover of peace, kindness and compassion, but in equal parts a fighter when it comes to my dis-ease and if someone I love is being hurt.

But with the wrecking ball of a situation in Boston after the marathon bombing and the shooting of a police officer at the Massachusetts Institute of Technology, I’ve had a rising bubbling in my belly. Then this morning when I was checking in with what was going on in the world, I saw this photo which made me feel uncomfortable.

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I can only comprehend the relief people felt when the perpetrators were respectively killed and caught, but to celebrate in this way by high-fiving and fist-pumping just doesn’t bode well with me. Relief and celebration are two very different things, as William Campbell, whose sister Krystle was killed while waiting for a friend to cross to the finish line. He told the Boston Globe: ‘I’m happy that nobody else is going to get hurt by these guys, but it’s not going to bring her back.’

My imagination cannot and does not afford me how the families of the killed and maimed must feel. Their hurt, anger and horror are nearly impossible to reconcile, but celebrating the death of another human being – as inhuman as they may be, and as inhumane as the acts they carried out – a celebration doesn’t gel with me. I understand how the concept works for others, but the byline of ‘We got them’ didn’t have me in a state of rejoice. It was more of an abatement of pressure that no one else was going to be hurt. But it also made me question.

Why did these two brothers do what they did? What drove them to kill and wound as many people as they could with their crudely made bombs? One brother was a medical student, learning how to extend life, not take. Perhaps we will never know, despite the current and future media speculation this case will attract. It is easy to not treat these people as human beings.

Seeing the photo of celebrating crowds, my stomach turned. I called upon my compassion for both the dead and the survivors, including the two brothers who have caused interminable pain and suffering for thousands of people for generations to come. But what of their families? There has to be compassion on both sides if we are to march through the grief and emerge on the other side, stronger and united in our stand and passion for peace. May the river of compassion always run through you. Then again, sometimes compassion is not enough.

In case there is any confusion, in no way, shape or form am I downplaying what dreadful acts were carried out in Boston last week, nor am I saying it’s ‘ok’. It’s not. Innocent people were murdered and seriously wounded.

All I’m trying to do is sit in a state of compassion, which is not always easily done in situations like these. But I am trying, and I believe that counts for something. I’m inviting a ‘call to compassion’ instead of a ‘call to arms’. Your thoughts, please ♥