Category: lust

Speaking my truth (and a whole lot of fact)

In May, I was invited to speak at the P.A’s clinical ethics forum for National Palliative Care week. This year’s theme was ‘Living Well with Chronic Illness’, and before the forum, I met with three lovely ladies to mull over what I might like to discuss in my talk (sex? It was a unanimous YES). I was lucky enough to meet Susan, the customer support officer from Metro South Palliative Care, Clinical Ethics Coordinator Jenny, and Letecia, a Clinical Nurse Consultant from the palliative care team at the P.A. All compassionate, funny and fiercely intelligent women.

I was humbled that they would ask me to share my experiences as both a lifelong patient and now, as a caregiver. I’ve been contemplating whether to share it on my blog or not, but have bitten the bullet, so here is an ever so slightly edited version of my talk. I’ve included a few of the photos I used in my presentation (and a couple that I didn’t) so you have something to look at due to the sheer amount of wordage.

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What would be the last thing you’d want to think about when you’re dying? For me, it’s hideous practicalities like sorting out power of attorney and advance healthcare directives, hunting for my passwords so my family can manage my social media accounts or writing a will. I mean, who really wants to do any of that stuff when they’re dying?

What about living well? And not just living well, but dying well while we’re alive? There’s nothing to stop death, and everything to guarantee it, yet dying is often put in the too hard basket, but it’s really the most human thing we can ever do, alongside of birth. Is it crucial that we live and die well? I think so, both as a lifelong patient and now as a caregiver with the sick and dying.

Like cancer, the term ‘palliative care’ can immediately engender fear. I’ve spoken with patients and friends whose doctors have brought up the option of palliative care, and they so often they believe that it’s far too early to even think about it. Many people think palliative care is introduced in the last weeks and days of life, and while that can be the case, it’s possible to live for months and even years with palliative care. So back to living well when you’re dying. What does that mean? For me, the linchpin of living well, and living a full life has been finding and creating meaning and purpose. Over the years I’ve been able to do that by writing, exploring my spirituality, and now being a caregiver in the death trade as a death midwife and pastoral carer.

When I was growing up, and not until too long ago, palliative care and Cystic Fibrosis didn’t coexist in the same lexicon. Now, patients are referred far earlier down the line so that they don’t have to waste away in a hospital bed without the chance of living their best lives. No one talked to me about dying, but from the day I went on the transplant list in 1998, I knew there was a reasonable chance that I’d die waiting.

I still find it confounding even today that no one from my medical team talked to me about dying – not even the psychiatrist I was seeing for depression. I think it was assumed that because I was under the care of a psychiatrist, no one needed to ask about how I was faring emotionally. But the problem was that I wasn’t really discussing my impending death with my psychiatrist either, and yet there I was, suicidal because my life has ceased to be, and in a state of existence. I’d had to defer university, and for someone who was very focused on academic pursuits, that was tough to take. During the past year, I’d had to cut down on my study, and was unable to do any voice or movement studies because I just didn’t have the energy or the breath. With the physicality of acting and singing, I found it hard to reconcile that I had to focus more on the theory side of things, and then nothing at all.

I remember getting a call from my transplant physician Scott Bell the day I was called up for transplant – that is, before a donor had been found – and I remember his words verbatim. Scott knew I was at the end of the road and that finding a suitable donor was highly unlikely. He said, ‘I’m so sorry. I’m sorry we haven’t been able to get you lungs. I’m sorry we can’t save you,’ to which I said, ‘that’s okay.’ I knew he had done his best and I appreciated his candour – something that had been so sorely lacking with the team who were looking after me at the Mater. That Scott had shared his humanness with me, as opposed to just being my doctor, meant a lot. After Scott’s apology, I got the call that there were donor lungs available just before midnight. Had it not happened to me, I would never have believed it.

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This is Scott telling me ‘it’s not going to be easy’. I was okay with that.

The people who did talk about dying and death were my nurses. There was this no BS thing between us, and I could talk and make inappropriate jokes about my own death to my hearts’ content. But no one ever came to talk to me about dying, and for me that was disappointing because what was unfolding was really quite remarkable. And so it was something I had to do on my own. Not long after I went on the transplant list, I planned my funeral. Not a common thing for a 21-year old to do, but it had been rolling around my head since I was a little girl. For me, getting that out of the way so I could focus on living was essential in getting on with life while I still had it. It was without a doubt, a time fraught with much sadness. All of my friends were cruising along with their lives – going to uni, travelling and living full lives – and yet here I was, seemingly stuck. Life on hold, mostly living in hospital with a very poor prognosis.

As a young girl, I was acutely aware of the difference between being treated as a patient and being treated as a human being. I had always wanted to be treated as a person who had something to contribute to society, not just as a dis-ease. When you’re a body in a bed, your sense of identity is often stripped so far back that you don’t recognise yourself, and I found that if you can’t recognise yourself, other people are going to have trouble, too.

One day at home alone, I remember looking at my naked body in the mirror as I edged towards what I call my ‘acute dying phase’, and I began to cry. I went blue from crying. I was literally fading away. My breasts had shrunk and I looked like a little girl. I knew that there were big changes happening in my body, but over the course of my life, they’d been cumulative. This was more like a free fall, and as I took the time to really digest who and what I had become, the Bruce Springsteen song ‘Streets of Philadelphia’ began playing in head. I’m sure many terminally ill people would identify with the lyrics.

Now even though I was dying, I was still very much alive.

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Two Frenchmen. I was 21 and end stage. Don’t judge me.

I adapted to dying, and adapted well. I had after all, spent my entire life adapting to every possible circumstance where most were out of my control. I knew full well I was end stage, but I was very calm and accepting about that, which still surprises me. I think it was a combination of being bone weary after having suffered for so long, and the pain was so immense because I wasn’t receiving adequate pain relief. I am many things, but I am not brave. I’m actually quite averse to being told that I’m brave because I honestly don’t feel as though I am. I’m just a person who has had a few detours around what is considered a ‘normal’ life, and I’ve been dealt more death – or ‘non-life’ cards – than most people.

The militarisation of illness, dying and death is something I’ve always had trouble with. I’ll be honest and say that I take umbrage when a person dies and people say they ‘lost the fight’ or the ‘battle’. I can see how people can equate illness with ‘winning’ or ‘war’, but war imagery can be really quite harmful to the person and their family. It’s like they’ve made the choice to give up or surrender and I feel that it shifts blame onto the person because they weren’t strong enough or they didn’t try hard enough.

As a writer, language matters a great deal to me, so when we use terms like treatment ‘regimes’, to ‘invade’, ‘attack’ and ‘target the enemy’, this can signify to a person that they need to assemble an army, and when you live with a life limiting condition, you do have an army and an arsenal of sorts, but it can be a frightening prospect that you have no other option but to survive at any cost.

In 2007 when my lung transplant consultant told me that my cancer surgery may very well kill me, my exact words were, ‘why, after 30 years, would I give up now? I’m not just going to let cancer kill me.’ That was nearly nine years ago, and in all honesty, I can’t tell you that if ever I got cancer again or if I went into chronic rejection, that I wouldn’t use warfare terminology because humans are by design, combative creatures, so it’s easy to see why that when our lives are threatened, we move into that space of fight or flight. It can be useful to see an illness as an enemy or an invader, and while I’m not going to go all Susan Sontag on you and lecture you on the metaphorisation of illness, I am a big believer in whatever gets you through, be it meditation, prayer, art therapy, crystals, yoga, visualisation or howling at the moon, then that’s what you should do. I would encourage you to read Sontag’s seminal text ‘AIDS and its metaphors’ and its predecessor ‘Illness as metaphor.’ In fact, just go and read all of Susan Sontag’s books.

So getting back to whatever gets you through. Let your patient go through the motions. Let them feel sad, indifferent, pissed off or devastated. My advice is to be realistic, and to be realistic within the context of how each patient is experiencing their illness, whether that be cancer, CF, motor neurone, MS, AIDS, heart or kidney disease. Use hope, but use it wisely. False hope and positive talk has done equal amounts of harm than it has good, and as both a patient and a caregiver, I find that when I sit with whatever emotions surface, instead of resisting them, it’s going to serve you better if you process these emotions in your own time.

Being with, as opposed to fixing, our existential pain is something we could do a lot better, and besides, people will learn the truth if you’re giving them false hope, and they will be monumentally PISSED. You don’t want to piss off someone who is dying because time is precious, and being happy is paramount. Something I’ve learned, is that positive talk can lead to victim blaming where you’re seen as being pessimistic. Positive action and honest interaction are far more effective than positive talk, and I find the whole ‘Oprah-isation’ of life where the glass always has to be half-full, even if it’s in a million pieces, to be arbitrary and even a little reckless.

A good attitude does not and cannot change circumstance and the universal call to think positively is not a panacea for suffering. In my own lived experience and the shared experience of friends who have CF, I’d much prefer to be realistic. That’s not to say that I’m averse to hope – hope is a huge part of how I’ve come through the other side of illness – but no amount of positive thinking was going to help me as I drowned in my own mucous, and it certainly wasn’t going to help me when I had cancer. For me, acceptance has always played a fundamental part in my own survival. The closer you get to death, the more you understand life, and there’s a propensity to reject unrealistic outcomes. In her book Smile or Die: How Positive Thinking Fooled America and The World’, Barbara Ehrenreich artfully rejects the widely believed notion and justification that cancer is a gift. Just like the pink ribbon for breast cancer, Cystic Fibrosis has been wrapped up and represented over the years with rainbows and roses. Why not a photo of my dead lung?

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I mean, that’s a pretty realistic portrayal of CF. I guess rainbows and roses are more appealing.

As humans, we find it challenging to accept the harshness that is reality, which I like to call the ‘cold crucible of day’. I’ve often said that I’ve been gifted the passage of dying with the work I now do, but never have I said that Cystic Fibrosis or cancer was a gift. Having said that, I would never ‘un-CF’ myself, because having CF has given me a unique lens through which I have looked through all my life, and I wouldn’t be me without it, just like you wouldn’t be you without your experiences.

When I was on the transplant list, I became what I call a ‘moment collector’ where I moved from one moment to the next – almost always with a camera – to record what many people called my ‘battle’ against CF. I was ‘losing’ to my illness, and far before I even knew about the militarisation of illness and death, words like ‘fight’, ‘beat’ and ‘win’ felt quite at odds with what I was actually experiencing and feeling. By collecting these moments, and having a visual record of my life, it helped me feel in control, and when you’re sick or dying you’ll do anything to feel as though you have the reins. Dealing with the actual reality and the need to feel optimistic about a terrible situation was a very fine balance.

When I was on the transplant list, a unique opportunity presented itself. A student in her final year of photography at the Queensland College of Art wanted to document my journey from going on the list initially, through to transplant and/or death. Alicia, who became a dear friend, was also an Intensive Care nurse, so this gave her some clout when the time came to sign waivers and what have you with the Prince Charles Hospital so she could photograph the actual surgery should it happen. So here are a few photos, and just to let you know, there’s one (okay, maybe two) photos of my boobs, but they’re purely medical.

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BEWBS! And hoses.

 

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Mum, Sharon and a comatose me.

 

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Alan, my favourite ICU nurse.

The day after I was extubated I saw the proofs of my surgery, and this let me really own my entire transplant experience. When you’re in the eye of the storm, there’s so much you don’t get to see or feel, and it’s an experience that is almost impossible to process. These photos helped me to put the pieces of my identity back together and let me really observe who I was before, during and after my transplant, as well as what my family and friends had been through. I’d felt such a disconnect from my body when I was so sick, and it was interesting to see the evolution of my post-transplant body and life.

Photos are so important for a couple of reasons. You might have noticed that when people come into hospital, they like to surround themselves with photos, or maybe that’s not so much the case anymore with mobile phones and social media. But as a pastoral carer, I see it a lot where people bring in photos because it helps them reconnect to what their life – and their identity – was before they were diagnosed or before they had their accident. It helps them grieve for what was and gives people a touchstone for where they’ve been and where they want to be.

If we could change the message that palliative care matters not because we’re dying, but so that we may live better lives, then perhaps that might make people less fearful and more receptive to accessing services earlier in their disease trajectory. For me it wasn’t so much about death when I was dying – it was about living the fullest life I could.

I didn’t really want for much when I was dying from a medicine perspective, but the one thing that was lacking and that most bothered me was choice, and dying how I wanted to die. As far as my doctors were concerned, I was going to die in hospital. Now this was something I had spoken at length to my Mum about. I had seen umpteen friends die horrible deaths in hospital for varied reasons, and some of those memories reached right back into my childhood.

I remember being in a six bed cubicle at the Royal Children’s Hospital, and while we’d be having noisy treatments like physiotherapy or eating meals, there would be children dying around us. My mum remembers curtains being closed around a child’s bed as being the only modicum of privacy that that child and their family were given. Parents would walk out howling at the loss of their son or daughter, and this had an untellable impact on us both as friends of the child, and having the same illness as the child who had just died such an undignified death. To be frank, it was pretty barbaric. Thankfully things changed, and dying has become a more private experience, but we have still have a lot of ground to cover.

So what was my meaning when I was dying? It was really simple. Living my best life. I was 21, so I wanted to do the things my friends were doing. It wasn’t ground breaking, that’s for sure. We’d go to coffee, go to parties, and do other social stuff. I was able to drive for a while, and that was critical to my sense of identity to get out and about. Even if I wasn’t doing what I really wanted to be doing – which for me was going to uni (tragic, I know) – at least I felt as though I was doing something. My quality of life was still pretty good. I was going out with my friends and I was in a relationship. My friends were brilliant. If there were too many stairs at a venue, I’d be bundled up and carried, and I took a bottle of oxygen wherever I went. To be totally honest, I’m surprised I never blew up because of the non-existent smoking regulations back then.

Feelings of low self-worth can be a burden when you’re living with a life limiting condition, and so I wrote. A lot. That was how I created meaning and purpose. It was and still is my bliss, and it’s saved me more times than I can remember. When I’m not writing, I’m reading, researching, plotting, learning from my mistakes and other writer’s successes, trialing ideas and agitating grains of thought until they become something more akin to a pearl; rehearsing scenes in my head, and perfecting the art of observance – all things that suffuse my life with meaning. I’ve been reading Hugh Mackay’s latest book ‘Beyond Belief’ and I’m going to hear him speak tonight. He writes that ‘eventually, we realise that finding meaning and purpose in life to satisfy that desire for control’, and to a point that is true.

But what happens when you go from living well and into survival mode? Transplant is a really odd space to be in – physically, psychologically, emotionally and spiritually.

You’re dying, but you might get a call that will save your life.

That call might save your life, but someone else has died.

Another family is grieving an immense loss.

You’re living with the slug of death, and then you’re presented with the gift of life.

You feel guilty for celebrating that you have lived and the pressure to atone for that is always with you. For me, transplant was an incredibly violent return to life with a prolonged and painful recovery.

So cut to 2006. I’m about to get a little personal, but I’m sure you’re all very open minded. I receive a call from my gynaecologist telling me that my pap smear had returned an abnormal result. There had been minor changes in my cervix, but what she was most concerned about were the changes in my vulva. I was referred to a gynaecological oncologist, and for the next eighteen or so months, we tried to keep cancer at bay with some really horrendous treatments which I needed voluminous amounts of opiates for. I had little to no quality. I had to move back in with my parents, who by the way, are absolutely wonderful, but I found myself in that sick role again. I began to not recognise myself again. I had gone from doing my Masters in creative writing and being a teaching academic to being reliant on others again. I’d had so many years of great health with my lungs, so when you’re diagnosed with something as unusual as vulvar cancer – a cancer mostly seen in older women – it puts you in a very precarious head space.

In November 2007, I underwent a radical vulvectomy, a seven-hour surgery which required extensive skin grafting and an ileostomy. Despite this package deal, I felt quite cheated. The surgery itself went well, but on about day five, things began to go awry. My bowel obstructed and I started having massive seizures which left me in a coma and in danger of having a heart attack.

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Girl, obstructed.

I was ‘between worlds’ and deep into another near death experience. The interesting thing is, even before the surgery, I felt like I was dying because I was suffering and not living well. My quality of life was pretty woeful, and it wasn’t great for a while afterwards either.

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Between worlds with my beautiful sister, Nikki.

I’m a hopeful person and have always maintained that things can be worse, but in 2007 when I was lying in a bed with broken lady bits and an ileostomy that exploded like clockwork, I found it near impossible to be chipper. I wasn’t dying, but I felt like I was. In fact, I felt like I had died, and come back to existence. Not life, but existence. Thankfully, there was a psychologist on the gynaecology oncology team who helped me process the dreams or terrors I experienced when I was comatose. They were terrifying, and I couldn’t speak about them to anyone until this lovely lady asked how I was faring post coma, and if there was anything I wanted to talk about. I touched upon my new and overwhelming fear of dying, and that was when I was able to tell her that the terrors felt real – as though I had been moved from my body to these other terrifying places where I was tortured physically and mentally. Did I have post-traumatic stress after that near death experience, or has my entire life been a case of non-stop PTSD? I tend to identify with the latter.

It’s no secret that we find ourselves in a death phobic society. I’m sure you’re well aware of the Kubler-Ross five stages of grief model. It’s a model that never sat well with me and up until recently, I couldn’t put my finger on why, but in February, I went to hear Stephen Jenkinson speak. Stephen is from Orphan Wisdom School in Canada, and he clarified what I’d been trying to articulate for so long, and that is that the Kubler-Ross model is better suited to trauma, or more specifically, PTSD. Dying is not just a psychological event, as Kubler-Ross stated it to be – it’s physical, psychological, spiritual, communal and a bunch of other things that as a death phobic society, we have trouble grappling with. I never experienced the Kubler-Ross trajectory of grief. I’d lived my entire life accepting that I would in all likelihood, die. There was no denial, anger or bargaining when it came to my own situation. Yes, there was depression, but I think after over seventy deaths, you become a little desensitised, and that feeds into survivor’s guilt where you ask questions like, ‘have I cried enough, grieved long enough or been sad enough?’

So what will I do differently when – not if, but when – I enter my final stages of life. I’d be referred to palliative care as early as possible. Diagnosis is an ideal time to be linked with palliative care for emotional and spiritual support or what we call the bio-psycho-social model of care. That consistent monitoring helps one remain engaged in life, with meaning and purpose, and that is living well. In 1998, I wasn’t afraid of dying – I was more afraid of not living while I was still alive. I had reached the end of not only my life, but the end of myself as a human being. In the twentieth century, dying became very medicalised, and we’ve been living in a death phobic society since the civil war and the birth of the funeral industry. But that’s another talk entirely.

The invisibility of illness and the art of comparison is something I’ve always dealt with being chronically ill. Illness comes with its own judgments and perceptions, and I wrote the following a couple of years ago when I was sick:

It’s not chemotherapy, but … it’s crushing exhaustion, aching bones, rigors, a barely-there appetite, heart palpitations, diarrhea, nausea, seizing muscles and bone aching lethargy. Most mornings it’s a struggle to even sit up in bed, mix my antibiotics and push them through my CV line. ‘Antibiotics?’ I hear you say. Yes – antibiotics. Whenever I get a lung infection and have to have a very obvious CV line indelicately threaded into my jugular and stitched onto my neck, people look at me and always assume the worst. I’ve heard people whisper, ‘oh, she must be on chemo,’ or ‘She must be on chemo where she doesn’t lose her hair – how wonderful!’, and worst of all, ‘I wonder how long she has left?’

For the record, I don’t have cancer – not this year, anyway – but when people learn that I’m on antibiotics as opposed to chemotherapy, they immediately express their relief and tell me that they’re glad it’s ‘nothing too serious’. I guess it’s not ‘too serious’ until the antibiotics stop working, I get pneumonia, end up on a ventilator and die. I’ve seen it happen time and again with my friends.

Transplant isn’t a cure for Cystic Fibrosis. What I’m doing is essentially buying time. I’ve always been hyper aware of that and as I mentioned, I still occasionally get sick which comes at a cost every time. A couple of years ago when I had a lung infection, I needed to have blood tests done twice a week to ensure that my Tobramycin level wasn’t too high. High levels of this drug can send me into kidney and liver failure and affect my hearing to the point of going permanently deaf. In fact, before my transplant, my levels were so high, I was falling over from vertigo and tinnitus – and that’s not before the nausea, runs and rashes. Thank goodness for home delivered groceries and supportive family, because from the moment I start treatment, up until three weeks after I’ve finished, I fail to experience a solid bowel motion, am on fentanyl for pleurisy, have violent sweats and the vomits. I know – it’s all very glamorous.

Another thing that can make me nauseated is the proliferation of inspiration porn. I honestly do not believe that I am stronger for having had CF or cancer.

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Disclaimer: Moments like these do not necessarily make me stronger.

I’m more resilient than I might have been, and all cried out of tears, but not necessarily stronger – and certainly not a victim. I only ever came close to feeling like a victim when my friends died. I could get through the treatments, the pain, the surgeries and whatever else CF threw my way, but I felt so totally cheated when a friend died. This, coupled with survivor’s guilt has had a profound effect on most aspects of my life. I live in a community where I coexist with victimology and survivorship, so I just want to make mention of survivor’s guilt for a moment.

I think it’s crucial to keep in mind that any patient under your care may have friends who are dying from the same illness they have. This has a profound emotional effect on the psychological welfare of the survivors, and for me, it always called into question not ‘why me?’ but ‘why not me?’. There was also the question of when. When am I going to die, and this is where what you do counts. It doesn’t take much to make a positive impact on someone’s day. A gentle touch, a knowing glance – even an unknowing glance – or a few simple words like ‘I’m sorry about your pain – is there anything I can do?’ can make the difference between a terrible day and one that’s bearable.

I like to think that I would have still found my authentic self had I not grown up with a life limiting illness and a life punctuated by death. I think that because of my childhood, there was a part of me that felt as though I needed to wear a mask of happiness; to pretend I was okay when I was anything but, but I also felt that I was still authentically me. Growing up, I was a firecracker; fierce, loud and almost menacing with my lust for life (yet very polite). Once I had my transplant, that fierceness was taken away to the lab with my dead lungs in a bucket after I literally lost my voice when my left vocal cord was paralysed after being intubated. Losing my voice had an untellable impact on me and my identity. I would ask myself: who is this new person?

So there’s lots of questions in life and in death and questioning has saved my life more than once, so don’t be surprised or offended by being questioned. I know that you have a million and one things going on, but if you don’t listen, you’ll never get the full story which means you’ll never get the whole experience. I’ll give you a personal anecdote about listening and asking questions.

When I was ten, I wasn’t being compliant with my medication and other treatments because I wanted to be like my friends. I was called a junkie when I took my tablets at school, so I stopped taking them. I hated physiotherapy and would always try and get out of it. I ended up being referred to a social worker, and my non-compliance was mistaken for being mentally ill. I was also grieving the death of a very close friend. My parents were hoodwinked into thinking I was mentally unstable, and I was admitted to the notorious Child and Family Therapy Unit at the Royal Children’s Hospital, which is just a fancy name for a psych ward.

I was an inpatient for just short of two weeks before my father broke me out, but for the interim, I was under 24-hour observation where I couldn’t close the door to my room or have a shower alone because I was deemed a suicide risk. I’m going to reiterate here that I was ten years old. I could only see my family on certain days at certain hours, and we had to be supervised. Everything I did was monitored, and while I’m sure the social worker who was dealing with me thought she was doing the right thing, had they taken the time to listen, instead of letting my parents answer on my behalf and putting words into their mouths, the outcome would have been very different. Did it change my behaviour? No. And the reason why, is because I still wanted to be a normal kid.

Relationships and trust are essential parts of patient care and listening can be an art form. Care is about more than treatments and being proficient with procedural tasks. Talented with a scalpel? Great. Not so good at taking on what your patient is trying to tell you? Not so good. Care is about relationships and advocacy and about how a practitioner – any practitioner – cares for their patient in a broader context. Last year when I did my first unit of Clinical Pastoral Education here at the P.A, I learned how to listen with my ears, heart and every fibre of my being thanks to the expert stewardship of Noela Fanshawe.

Speaking of experts, I’ve been very fortunate to have had the most amazing nursing care over the years, but nursing has changed radically over my lifetime. Nurses today have a far more complex role than their predecessors, and they make critical decisions that many years ago, would have been made by doctors. I’ve spoken at length with nursing professionals who feel there’s been some erosion within their role. Simply put, nurses are busier than ever, and in a traditional hospital setting, there is less time spent by the bedside and that’s where social workers and pastoral carers have helped ease the burden felt by nurses in the past. For the most part, they’re overwrought, underpaid and overworked. It is said that it takes a village to raise a child, but it also takes a village to look after our dying and their families, and that’s where all of you come in.

Over the last six years, I’ve found myself in the somewhat unusual position of being in the care industry as a death midwife and pastoral carer, and what better compliments death, than sex? Eros and Thanatos. They seem to have close connection – a relationship, if you will – and after searching for peer reviewed articles about sex and dying, I have to say it was slim pickings. I also went through all of my death books – and I have a veritable library – and it was disappointing that only a few mentioned sex and the dying person, because on a personal note, I wasn’t willing to forfeit sex when I was sick. Sex was an intrinsic part of my humanness and my identity as a woman. It’s well researched that sex helps in facilitating emotional connection, and that it can be a spiritual practice.

It’s not just the young and physically well people whose sexuality is an important, and even essential, part of their lives. I mean it goes without saying that the sexual needs of people with physical or intellectual disabilities are largely ignored. There was a great episode of Insight on SBS recently that highlighted how crucial sexuality is for people with disabilities. It has a myriad of unexpected health benefits. For one gentleman, his pain levels and violent tremors were more settled in the two to three days after he had had sex.

For me, it helped clear my lungs when physiotherapy became too painful; it elevated my mood and brought my partner and I closer together emotionally. My partner at the time also recognised this – I mean we were only twenty one, so not too wise – but we both knew that the benefits outweighed any risk. I mean, if I was going to die from going into respiratory arrest while having an orgasm – what a way to go. It was also quite amusing turning up to the hospital to re-access my port because the needle had mysteriously ‘popped out’.  On a more serious note, the bond I’d created with my partner provided a beautiful and playful space where I could forget about being sick for a while.

Our sexuality is such an inherent and natural part of being human, but quite stigmatised. I mean, who would even want to think about sex when their life is under threat? ME. But that’s just the thing – because a person is sick, disabled or dying doesn’t mean that they’re any less of a sexual being.

As a pastoral carer, if a patient broached how their illness was impacting their sexuality, I’d talk very openly, guided by what my patient is sharing with me, and I’d possibly make a referral to a social worker or psychologist, and perhaps they could refer to a sexologist.

Parker J. Palmer wrote that, ‘The human soul doesn’t want to be advised or fixed or saved. It simply wants to be witnessed – to be seen, heard and companioned exactly as it is.’

We often forget about the private lives of patients because we’re so focused on their medical care or treatment plan, even if it is palliative. Michael Rothenburg, an American psychotherapist, sexologist and hospice worker, wrote his PhD called Sex, death and dying: an examination of sexuality and terminal illness among hospice workers, palliative care professionals, terminally ill patients and their family caregivers, and something I gleaned from the basis of this study (the basis of it, not the study itself), is that palliative care professionals are traditionally responsible for tending to the physical, spiritual and emotional needs of patients and their families, but patients sexual concerns aren’t on their radar, and that’s a combination of ignorance and fear. When sexuality is broached,  we need to cleave open that dialogue and engage with our patients. Also, don’t be naïve and think that your patient’s aren’t having sex in hospital, because they are. From personal experience, they will find a way.

Being in that ‘sick role’ can be quite dehumanising, and that’s something that I had to manage, which was compounded by the constant grief of my friends dying. I know I’m repeating myself here, but I didn’t fear death – what I did fear was the loss of my independence. At the end, I was bed bound and couldn’t shower without assistance, but by far the most demoralising thing was that I couldn’t walk, so that meant being pushed around in a wheelchair which made me feel controlled and somewhat under lock and key.

Losing my ability to move was the final insult, and still to this day, I am loath to get into a wheelchair. These kinds of changes – the loss of independence and autonomy – require a great deal of social and emotional adjustment. Your pride is bruised, and by the time I was too sick to go out with my friends, I was lucky that they brought the party to me. The support I had from my friends was incredible. Not to militarise my experience, but I did have a sizable army of love and support.

As a society, and now with the proliferation of social media, we thrive on life and the pursuit of happiness. We celebrate births, baptisms and birthdays, but we rarely celebrate what is for me, one of our greatest journeys – death. We’re taught from a young age about sex and the dangers of drugs – which if you think about it, are both closely connected to death – and we’re given lessons in ‘life skills’, but because we’re never educated about dying and death, it comes as no surprise that we’re so averse to talking about it.

Now some of you might have heard of ‘Driving Miss Norma’. Norma is a lady 90 years young who was diagnosed with uterine cancer shortly after her husband died. Instead of seeking the usual medical options like surgery and chemotherapy, she chose to eschew all treatment and is currently travelling around the U.S with her family and their poodle. She literally said to her doctor, ‘I’m 90 years old. I’m hitting the road’, to which her he said, ‘Right on’. Her doctor acknowledged that her quality of life with treatment would be poor. Norma is sharp as a tack, not in any pain, and her story has made headlines around the world as she lives it up driving speedboats, hot air ballooning, and drinking craft beer. I have great respect and admiration for her choice to live – truly live – while she’s dying, and I feel the same way about her doctor for supporting her decision.

Dying and death have never been so medicalised, and I fear that this has made us even more death phobic. We have cutting edge technology like never before to pull people back from the edge of death, but because death is so often seen as a failure in medicine, health professionals can become obsessed about preserving life at any cost. Death is not a failure, but not providing good death care IS. Human beings are not machines and shouldn’t be treated as such. Our physical symptoms are seen as being ‘fixable’, but our emotional and spiritual needs are often an afterthought.

One of my mentors, Dr Michael Barbato, uses the term ‘precious normality’. He writes in his book ‘Caring for the Living and the Dying’ that ‘one of the very sad things about dying, is that the closer someone is to death, the more likely they are to be treated as a patient rather than a person.’ Tests, treatments, and prognoses all contribute to the dehumanisation of a person who is living with a life limiting illness.

So here’s to the things that help me live well – sweet milky tea, books, night swimming, writing, dancing, music, skinny dipping, knee high boots, singing badly, moon gazing, advocating bacon as a food group, good coffee, compassion, friends, family and taking leg selfies on doctor’s desks.

 

 

Poem in Cordite Poetry Review

Pinch and a punch and white rabbits to you on this, the first day of November. I’m stoked to share my poem ‘Chemistry’ with you which has was chosen for Cordite Poetry Review’s ‘Toil’ issue. It’s the second poem of mine that Cordite have ever so kindly published and I hope you enjoy reading it as much as I loved writing it.

I have to say that I’m very happy with the way this poem turned out. I wrote it back in winter, and if you think this piece has some deeply romantic undertones in it, then you’d be right.

lust: a follow up meditation

It is as though I have two heartbeats. This is how you make me feel. You give me fucking tachycardia, and then in a breath, my heart softens. I want you to lay with me; I want you to read to me. I want to read to you. Soak up Johnny Cash’s entire catalogue with you in me so I can taste your sin.

I care not for coffee, phone calls, dirty dishes, washing, paperwork. It all seems so unnecessary and futile, so I forget and clutch your waist with my thighs, squeezing the breath out of you. It’s like I want to make you hurt, but for reasons only I know. Then you catch your breath and surrender heavily into my neck.

Stars hail down on us like confetti and I want to take you across the street to the river; get you alone, cup your face in my hands. Simple things. It is all simple.

You make me want to strike piano keys and suck on cherries and peel pears and beat my boots into the ground until my foot bones splinter and bleed.

And all of this terrifies me.

Like water snatching at ropes, you pull me in like a tide, then let me go. Spank my rosy arse in the night-time. Hell, even in the daytime; such sweet agony. You’re someone I don’t want to leave behind.

And all of this terrifies me.

It’s like:

shovelling wet sand up a mountain of ash

exploding fruit

writing that killer line

hitting a money note

swallowing sour milk

a stitch in my belly

a sliced finger

a fresh burn

a lime tree bursting with fruit

sun splintering through clouds

rain on dry land.

So many things.

And all of this terrifies me.

I watch you and your mouth and see it’s a little lopsided. I could unfurl that crooked grin with an eager tongue.

In the afternoon, we wrestle; bodies laconic with fatigue and marks from hard fingers. I pin your arms and you to wrangle my body to the other side of the bed and I’m yours – at your mercy and you know it; my sex wet all because of a lopsided grin.

I can’t tear my eyes, hands, mouth off you.

And all of this terrifies me.

Primitive

Gun empty, shot with intent,

I hoof hit/wheel roll/foot fall

dropping girasol like unfolding lies

then wait with convivial pause.

In the morning, a thump over the cattle grate;

the scene of an arrival; a foal on the run, mourning mothers milk.

 

In the night-time

we’re running moonshine over state lines,

black boot mafia

crossing chain link fences ’til

we’re making diamonds outta prayers.

Mouth raging pink with sainfoin,

dog soldiers lean on mud-brown huts – sharply muscled,

diesel in their veins and peach faced fuzz.

With the fleeting glare of a fox, I cut my teeth on the mountains

of my girlhood, for some pernicious reward that never came,

but through ravens call, hearken this …

ancestral voices dampen the well,

carrying my body boat in their fallacious swell.

Your tears collect in the hollow of my spine

so I stay stilled ’til they are dried.

 

A film of your despair visible only by the rush of midnight

and only one minute at that.

Thrown from your skin,

bones akimbo to the wind.

Death an internship,

slicing away at dreams and blanketed forces of thought.

A stretch of joy and a garrotte of light;

action put to the sword after a night of liberty.

Beauty is perilous, from cradle to casket (you should know this by now)

Unfold your eyes to the timbre of salute.

Peel open your mouth to speak a salacious moot of sin;

unknotting your limbs from unfeeling,

digging your fingers into the loam,

‘cos your daddy said, ‘there’s honey in that soil, milk in them stones.’

 

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

I kneel and pat away at moistening roly-poly roots –

the pads of my fingers dewy and yielding

stamped with flecks of broken china

from seventeen nights of rain.

In the morning, we roll through doorjambs.

You walk behind me; I am your windbreaker.

How many accidents until we collide?

For there is a necklace of deep regret that won’t come loose –

la douleur exquise –

there is nothing ordinary about this.

Eating from the hands of the land,

summer steals in, tearing winter away.

The blood-red of birth, the placenta of earth

that cannot be washed away.

Plan F

I’m a full-time healthcare provider. To myself. People assume that you’re cured after transplant, and that you go on your merry way with your phenomenal donor lungs and you live forever and ever with just the odd complication, sail through life, find a partner, have a lovely courtship, get engaged, get married in between a fabulous career and shit and maybe even have a baby and yeehaw, THIS IS YOUR LIFE. YAY!

But stuff happens. Unglamorous stuff like bowel obstructions, cancer that will keep returning, anaemia, addiction, diabetes, painful infusions for osteoporosis, rejection, migraines, lung infections, chronic sinus, life threatening blood clots, and that one time when your adrenal system fails you and you literally drop dead at your friends funeral where your Mum has to resuscitate you. Talk about stealing someone’s thunder, but apparently I ‘died’ very elegantly and without much fuss. Side note: Thanks Mum and the White Ladies who diverted traffic so I could be ferried across a main road to a medical centre.

And so last week, I started uni. You would think two courses would be simple enough, even if I’ve missed out on the first three weeks of lectures and tutorials because my enrolment was all very eleventh hour*.

After I’d slept all day Monday and all night, I woke up exhausted yesterday, unable to get out of bed. I tried to convince myself that I was ok, to the point of saying out loud, ‘I’m fine. Really, I am. It’s just the general anaesthetic that’s making me feel yuck. I AM NOT GETTING A CHEST INFECTION.’ I repeated this until I started getting breathless, which was about third canon in. I felt like I was coming down with the flu, had a productive cough; I was having hot and cold sweats and my resting pulse rate was 100.

My gem of a Dad rushed me off to hospital and dropped me off with my overnight bag – the same overnight bag I gave a stern lecture to on Saturday morning after I went home the following day after my sinus surgery, in that I didn’t want to see it again for the foreseeable future, unless it was for a dirty weekend or for my trip out bush later this month.

I sat on my bed and did something I rarely do. I cried. It’s not that I’m a hard human being. In fact, the most benign things make me cry. Music mostly. It is easily the most affecting art form, but crying makes me feel torpid and vulnerable. I want to push myself away from myself, but I can’t because I’m so present in my body. Crying also gives me a roaring headache and I end up wondering what I was even crying about, because everything that I should have cried over (but didn’t) bleeds into what I’m feeling, and I cry like a kid who’s had his Tonka truck taken away.

But back to yesterday. I underwent my usual tests after which I saw a doctor I’ve known for a couple of years. We’re not ‘close’, and while I don’t know him particularly well, he’s an excellent doctor. He took my blood pressure, looked at my tattoo and said, ‘that looks fresh.’

‘No,’ I said. ‘It’s nearly five years old. It probably looks so good because I don’t go out in the sun and I slather myself in sunscreen. I’ve got really good genes too. Apart from the C.F ones, I mean. You should see my Mum. She looks amazing for her age.’

He raised his eyebrows and nodded. I’d rambled too much, and so cleared my throat, closed my mouth and darted my eyes southward to the benign hospital carpet. I either say too much, or too little. There seems to be no middle ground. For example, I’m currently crushing on someone who doesn’t know it (or maybe he does – who knows, but if you do, speak up, because I can’t!) who I’ve only ever managed a smile or a ‘thank you’, or a really loud ‘hi!’ or ‘great!’, or ‘can you please put my coffee down for me, I have the shakes because of the drugs’ with. Oh yeah – ‘I have the shakes because of the drugs?’ FFS, Carly.

So back to yesterday … My blood pressure was uncharacteristically low. So call me underwhelmed.**

Five years. What have I achieved in five years? Some small stuff. Nothing major. Except for surviving. I haven’t finished my research Masters or my novel, simply because ‘stuff’ gets in the way. Some obstacles are too big to go over, so I have to go around and that takes time. I’ll not forget when a friend said to me that I always seem to ‘take the long way round’. We were 19, and I said calmly that I’ve had some stops along the way. We’re do’t really see each other anymore. Life has deviated for both of us and there’s really not a lot we can talk about. I’m also a big believer in that just because you have a history with someone, you don’t need to maintain the friendship for friendships sake.

So when ‘stuff’ happens (read: when I become unwell. I’ll rarely say I’m sick – ‘sick’ is reserved for when I’m on life support), I make other plans. Because I always have a Plan B, C, D and E. Sometimes, I even have Plan F for FUCK ME, UNIVERSE – ARE YOU SERIOUS? But I always get through it. Whether I’ve had my chest cracked and opened up like a clam for transplant or my vagina ripped to shreds first through topical chemotherapy and then peeled off like the skin of a grape when surgery was my only option, I get through it. Even with a poo bag, I managed. I’m not saying I managed it well. Maybe I did. Maybe I didn’t. But I managed.

The last five years have been about survival and just that. I’ve learned so much – about myself, about the world I find myself in and about other people, in both stop the clock beautiful ways and in less lovely ways. People can be … fucked. There I said it. People can be fucked. I like to think that for every misguided human being, there are three earth angels who are all managing their best. And that’s why I want to help look after people. That’s all I’ve ever really wanted to do – to be a light in the dark for someone when their light is fading.

We’re all just managing. I am just surviving. Every day is a new beginning. We’ve got this, people so let’s slather on sunscreen, pull on our boots and look fabulous while we’re doing it (thanks again, Mum).

* Currently checking to see if I can study just the one course this semester and an intensive in summer semester.

** which won’t last very long. I’m guessing I’ll be hypertensive tonight when I watch Patrick’s funeral on Offspring. And Nina gives birth #ohsweetbabycheesesicannotibelievethisishappeningandirealiseitsonlyatvshowbutFUCKIneedsomeEddieVedderrightnow

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Trapped, or The first and last time I’ll ever write about this

There are far more certainties in the world than death and taxes. There is bad coffee, love, storms in the summer, things you cannot have, and then there’s choosing the wrong people for ourselves. In 2008 – not long after I had fought so furiously for my life and survived an eight-hour surgery where I had my vagina and rectum cut away, skin grafted and was gifted an ileostomy (poo bag) and then went into a coma doctors weren’t sure I was going to come out of – I fell in love lust at first sight. It wasn’t a whirlwind – it was a cyclone. The connection this person and I moved through was something I hadn’t experienced since my first love, and like Lantana, I let it seed and strangle me. I had never had any reason to not be free with my love. I gave it away easily – I fell hard for people.

And so, I let someone in. But this person I ‘loved’ inflicted their sense of entitlement and narcissistic tendencies on me. I lived with what I thought were their ‘quirks’, but when it came down to it, I was being emotionally abused, alienated from the people I was closest to and within the vacuum, I lost myself.

Let’s call him Grug.

At first it was exciting and intensely romantic. It was all ‘wine and dine’ and spending wildly to impress me, although he never spent it on me. Instead, Grug would spend ridiculous sums of money on his P.O.S car that he always wanted to be faster and noisier with more horsepower. He would call and say, ‘I love you. I’m going to marry you’, ‘you’re so strong and amazing.’ Grug used a litany of superlatives and ridiculously clichéd euphemisms, but I was IN. He had me. Within the first week, he wanted to buy me a diamond ring, but at a later date, he told me I’d have to ‘earn it’. What the motherfuckity fuck? I should have run far, far away. How dare anyone tell me I have to ‘earn’ something? I was out of my head – literally – with the romance of it all and so cock whipped that after a couple of weeks, I found myself staying at his house for days on end, sleeping, not getting much writing done and basically starving myself to stay as ‘perfect’ as he would keep telling me I was. On our second date when I asked about his mother, he said (verbatim), ‘She’s petite like you, blonde hair like you, although it’s a bit shorter than what my step-father and I would like it to be.’

Massive red flag, yes? No. I was naïve and thought it was sweet. Or perhaps it was the wine. I don’t usually drink and Grug said that he didn’t either, but it soon became apparent that he was using alcohol and, from what I could tell, drugs as a crutch to control his moods, and I was merely a commodity for him. It took me some time to realise that I was never in love with this person – I was totally tripped up by lust and in love with the idea of being in love and being wanted. Following my cancer surgery, I had been out on a couple of dates, but nothing had eventuated. I felt entirely unloveable. I truly believed that no one would ever want me, and even though I wasn’t ‘broken’, I thought that all men would see me this way, which is ironic, because it seems the men I typically choose chose need my help and counsel with their own issues.

I don’t hate him. I don’t hate anyone. I hate what he did to me. He changed me. Irrevocably, through his actions and dialogue, he changed the essence of who I am. Or who I was. I became an empty husk of a woman who was now certain that no one would – or could – ever love me, and I haven’t been in a long relationship since. There I said it. Fuck me into a new religion, I ACTUALLY SAID IT. As afore-mentioned, I was convinced that I was unloveable for many years, even though I know I flourish in healthy relationships. I’d had successful relationships before, but these relationships had died a natural death and there was little animosity – which is not to say I never caused harm or hurt. I hurt people I loved and still love today as my friends. And it hurts to hurt people. It is not within me to deliberately hurt people.

But this relationship – this person was different. I was spirited away from my family and my friends, and over the years I’ve taken myself back to that place and wondered where my head was at. I know that I was much like a trophy to show off on ‘special occasions’, but mostly, he just wanted me to himself and I naïvely gave it to him. Within four months, I was ground down, depressed, starving (where had my love of food gone?), fatigued and what bothered me most – lacking in compassion. This person showed little to no compassion to anyone and everyone. He had an almost physical aversion to overweight people and a self-fuelled paranoia about the police wanting to ‘get’ him. As my best friend said, he was also far too polite for his own good. He was completely unable to express any compassion or empathy for people less fortunate and this went against the grain of my very being. I could feel my own compassion being stripped away, day by day. I was paint and he was thinners.

More than once I came home to a hyperactive little boy, off his face on who knows what and listening to TOOL*. Another red flag. He only listened to metal – thrash and death metal, if you will which is fine, but that’s all he would listen to. I decided long ago that if a man can’t bring John Denver or Neil Young into his heart, there’s something wrong. He was angry – I just didn’t know it. Specifically, he was angry at his father for ‘not giving him enough’ i.e. – a race car, because he wanted to be a race care driver. Again – WHAT??

He would say implausible things, and the one that strikes me as being the most telling was that he would call me ‘perfect’. I’d giggle and tell him that no one was perfect. But everything seemed perfect, and then the inevitable happened – I got sick with a respiratory virus. It was no big deal – for me, that is. I had a PICC line in my arm (much like a central line, but in the arm or leg for IV access), and when he walked into my hospital room, where he had taken his sweet time to actually come and see me, everything changed. It was as though I had become less of a person and more of my dis-ease. He was repulsed.

I was in hospital on a reasonably toxic triumvirate of drugs, and one in particular – the anti-viral drug I was on – significantly yellowed my vision and rendered me literally speechless. It was as if I had had a stroke. I just could not get my words out, and I’d sit waiting for the words to arrive – and eventually they would – but they seemed to dissolve on my tongue. Before these side effects had kicked in, Grug and I were at post-coitus at his place, and he asked me whether I was going to become co-dependent on him. I was floored. Co-dependent how? I’ve always been fiercely independent and I said that I’d done everything by myself for nearly thirty-one years and that sure as hell wasn’t going to change. He drove me back to the hospital in silence. I went up to my room and was physically ill.

A few weeks later, we drove back from a disastrous weekend away when we saw some police on the shoulder of the highway. He proceeded to call them ‘pigs’. I have some dear friends who are cops, and I know that what they have to deal with is anything but nice. Attending suicides, fatal car crashes and delivering death messages is something only the incredibly brave can do, and so it was not ok for him to say these things. I asked him who he’d call if his home was invaded and he was assaulted, to which I received a comment along the lines of, ‘I know how to defend myself. I don’t need the fucking pigs’ (until someone breaks into your home. Oh, wait – he did karate).

Full well knowing the relationship was over, I said that if he said anything untoward about the police again, he could pull over and I would get out and walk home. We drove in silence all way back to his place where my car was, and I gave him back his keys and left. Yep – he’d given me his keys in the first week where I’d taken them with glee.

I’m writing about some emotionally tender subjects in my memoir right now, and it occurred to me long ago that there’s no expiry date for grief. It goes on. As does life. But it chips away at you – oft times insidiously – and you can never put yourself back together. All of a sudden you are in a million pieces and you cannot find the fucking glue. Sometimes you need to walk away – from your friends, your family, yourself – everything. So that’s what I did. I spent a lot of time alone, much to my friends concern. I escaped the city and went out bush to my ‘second’ family. I walked out to far away paddocks and screamed myself raw at the universe, threw rocks at the empty air and collapsed into the red dirt every day I was there. The only person who I could talk to about this heavy blanket of grief was my mother. She understood my sorrow and my anger. Others didn’t, and that’s ok.

Sometimes the grief was too much and I thought I would stop breathing. I even hoped that I would. I considered suicide, but my brain yelled at me along the lines of something like this – ‘Why would you do something so selfish and stupid over such an insignificant example of a human being after everything you’ve been through? I don’t think so.’ And so did my Mum. She gave me some tough love and I needed it. It wasn’t so much as I wanted to die – I just wanted the pain to be gone. But I also wanted something that would never come to pass. I wanted  every trace of him gone. I wanted to wipe my memory of him. I would see something that reminded me of Grug and it would catapult me back to that place of grief where it feels like you’ve had the spine ripped out of your body. You’re on the floor and you wish there was a door you could open and tumble into.

This experience – not the person – nearly broke me. And I had people who wanted to break and destroy him. One of my fathers best friends who had met Grug over a lovely lunch up the coast wasn’t so sweet on him, so when we finally talked about it over some John Denver, I told him what had really happened. He asked if there was anything I had left behind that I needed, and I made the mistake of telling this man – a tough Ukrainian Vietnam veteran – that I had left some things behind at Grug’s place. His eyes glazed over – I remember exactly where we were standing – and he said with a blank stare, ‘I’ll go and get your stuff. What’s his address?’ I knew that if he saw Grug, he’d kill him and/or beat him into a vegetative state, and I love this great man far too much for him to go to prison over blood lust. The coffee maker I had taken to his house had been a gift to my parents from some very close friends in Italy, and he posted it to me which was great. Except that it was full of mould and old coffee so I had no choice but to throw it in the bin. I noticed that he sent it express post, but through his workplace so he didn’t have to pay the postage. Grug worked for a prominent radio station of which he was and perhaps still is, creative director. I don’t know anything about him because I do not care. I don’t pretend to not care – I just don’t.

For someone who had always loved with reckless abandon, I was in a situation that had paused my life. Limbo smacked me square  in the face and for years I couldn’t go back to that place of trust because he took that away which infuriated me, leaving me with a cleft as big as the Mediterranean. How dare he strip me of one of my best affirmations – to love freely. To feel and to love and be loved.  But I can do that now, I think. Just be gentle with me, and I’m yours.

Luckily, it didn’t take long for my charter of compassion to return. But he had torn me apart and I didn’t know how to put myself back together, so I spoke to a professional and they made a default diagnosis of a ‘sociopath with Narcissistic Personality Disorder‘. For the first time, I felt that the breakdown of my relationship wasn’t my fault. I wasn’t a failure. There was a reason he treated me with such ‘love’ which so quickly turned to repulsion.

I read about NPD and wept wildly. Everything made sense. His supreme sense of entitlement, the Oedipus-like relationship with his mother, the skewed relationship with his father, the immature sibling rivalry he had with his younger brother, why his first marriage  had failed, his obsession about perfection and the most telling, the fact that he had no friends. I mean NONE. I was often berated by him for having ‘too many friends’, and he said to me once, ‘you have so many friends. I don’t understand why you have so many friends.’

Of course I have a lot of friends – it comes with the territory of having a terminal illness, and many of my deepest friendships I’ve been lucky enough to have since both primary and high school. He made me feel like an anomaly for having so many people in my life, and the devil on my shoulder would feed my paranoia. It would whisper to me, ‘you have him now – you don’t need anyone else’ and ‘so you’re staying in for the eighth day in a row. It’s nice. It’s cosy and this is what love is. You have all you need.’

And so … forgiveness. I’ll admit it took a while, but when it happened, I felt like a big, beautiful soufflé. So much lightness. I had risen above; I had survived. I had sown every negative emotion and thought into loose earth and it all just fell away. It took a lot of compassion, but I got to where I needed and wanted to be.

About a year later, and still in the throes of devastation and anger, I met a man. A real man. He was older than me and we just clicked. It went on for long enough for me to realise that I deserved a champion and I’ll forever be in his debt for treating me with such kindness. It was as though we wandered gently into each other, and that was what I needed. The lure of introversion and introspection was now my solid foundation, and we bonded over his spectacular collection of vinyls, books, film and some lust. We are now dear friends who don’t see each other enough.

I believe that forgiveness was key to my healing, as was compassion. Forgiveness is the only way to move on from something or someone that has left you an empty shell.  I felt compassion for Grug because nothing and no one would ever live up to his expectations, and he was never going to be happy, even if he believed he was.

And so my message is this – NEVER let anyone change the essence of you and your spirit. Know that you deserve beautiful people, experiences, joy, love and light in your life. Have honest friends who will look out for you vet people you bring into your life. Be selective about who you do and don’t invite into your life. It’s basic self-preservation. You have to be vigilant about people.

I’m blessed to have a few brutally honest friends who know how to say ‘I don’t think so – I’m going to smack you over the head/what the fuck are you thinking?’ if I so much as look at a person who is not deserving of my time, intention or passion. I could never read people, but have found a a few strategies to be trusting, but wary, so if you’re like me or even if you’re not – surround yourself with good people. Believe in the power of forgiveness and be liberal with your compassion for others who are not as emotionally or spiritually evolved as you.

And now for a song. There always has to be a song that comforts, that placates and gives hope. With compassion Grug, I give this to you.

*I mean, REALLY. I grew up on metal, but Tool?