It is akin to a dream, this dense clump of trees unfolding before me, reaching so sharply into the sky. As I walk through the forest under canopies of palms and eucalypts and a discord of screaming birds, my feet arrive at a bog. I’m at the lip of a lake I cannot reach for the rain that has distended the ground. Perhaps Jacky can take me tomorrow so I can see where it splits from the earth and drops away.
There is life above, around and below me. The swollen ground silently objects under my boots and as I lift my feet, it plumps up like a pudding.
The air is slow and dense from woodsmoke and it anchors me to the moment. I crush leaves between my fingers; that stain of scent not leaving the folds of my hands until I bathe later that evening.
With the sun caught in the canopies – splintering shadows onto the ground as though they are dancing a jive – the screech of a cockatoo and flurries of parrots embroider the Piccabeen palms. Their silver mottled skins are grooved with what looks like upside down feathers, as though someone has taken the time to stencil each one.
Early evening yields to the call of the kookaburra, cackling at our stupidity and the irksome way we do not love them every minute of every day.
Diamonds scuttle across the water as the day reaches into dusk. The milky way splashes across in silver and white – a smattering of light and relief in their spilt majesty – and the sky cradles a waning moon.
Being here, it takes time to breathe at a slower pace; to let my belly soften and sink into my winter bones. I find myself in a world where it is becoming more difficult disconnect from the goings on of humanity, my country, my community. There is a deep well within me of wanting to be free from the destruction, the war and the suffering I have no control over. But then I realise for the millionth time that I control nothing. I can but try to go forwards in what seems to be the right direction. I can shepherd and steer myself, yet control does not belong to me. It never has.
I am finding myself enjoying growing older. Not only because I never expected to, but with the growth itself. I am assured as a human being, though never would I believe that I am particularly ‘good’ at any one thing, although I am on my way to becoming an exceedingly keen listener, and that itself is an art that is slowly being rediscovered by the masses.
Another art (and something I am not particularly good at) is writing. It is a pursuit I will never be great or even exceedingly good at. If I ever become half the writer I have yearned to be all my life, would that be a paragon of happiness? How am I ever to know if I am anything over than average unless someone tells me differently? And even then, can I bring myself to believe them? In all likelihood – not a chance.
With age comes wisdom and truth. Some are fraught with despair, while others have a far more convivial pulse. I remain unconvinced that absolute truths do not exist, although these things often come down to perception.
Breaking my bonds with the city, I ‘go within’ as Jacky calls it, and reach back into the folds of myself I have forgotten or allowed to lapse. I come back to breath and fire my body in the sun. My lungs expand; each lobe bristling with each seemingly bottomless breath. I readjust the way a spinnaker does downwind. Silence is my ballast.
As I come to see my senses as a decoy, I’m carried towards a deeper understanding of who I am, where I am in the world and how I came to be here. I temper my body, but do not become weary, and there is a far greater element of not needing answers – to embrace the mystery and come home. Should books and music, baths and tea, shadows on the wall from the moon, and the odd storm were all I had for company, I would want for nothing. For there is equanimity in the quiet, and peace in patience.
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.
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.
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.
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?
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.
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.
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.
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.
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.
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 whatyou 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.
A story from my childhood has recently been featured on photographer and multidisciplinary artist Mindy Stricke’s website for her ‘Grief Landscapes’ project. You can find it here.
A little about ‘Grief Landscapes’ … ‘for the initial phase of Grief Landscapes, I’m documenting the unique terrain of people’s grief through photography and a collaborative process with the public. First, I’m inviting people to participate by answering a series of questions online about how they grieved after someone’s death. I’m then photographing an object in extreme close-up that evokes the memory of the person who died, transforming it into an abstract landscape inspired by the participant’s grief story.’
Thank you for all of your hard work, Mindy and for sharing Ineka with the world.
Made prank phone calls ✔ Hey, I was young. But christ on a cupcake, it was funny …
Been honoured with fireworks ✔ Yes! I was born on New Year’s Eve, so for my 21st I had a huge party. My folks organised the crew who do the Brisbane city fireworks to stop at our place (we were living on the Brissie River) around 9.30pm. They left a whole lot for my Dad and our neighbour to detonate at midnight and they nearly blew themselves up. It was epic and people saw them all across the city.
Laughed so much you cried ✔✔✔✔
Caught a snowflake on your tongue ✔ Canada, 2004.
Had children ⊗ I found out when I was 16 that I couldn’t have children (severe endometriosis, cystic fibrosis and eventual vulva cancer), so I’ve never had a big ‘oh, fuck I can’t have babies’ moment. It’s just something that’s never been on the table, which doesn’t mean I’ve never been sad about it. My ovaries explode like Hiroshima on steroids and I melt when I’m with a baby. Just quietly, I would have been a fucking rad mum. Exhausted, but rad!
Stolen any traffic signs ⊗ I suddenly feel cheated.
Been in a car crash ✔✔ Both were minor, but here’s the kicker – the second was with an unmarked police car the day I found out I had to have a transplant. Top day that was …
Stayed in Hospital ✔✔✔✔ WHERE DO I EVEN START WITH THIS.
Donated blood ⊗ I can’t because of all the mad medication I’m on for transplant. I so wish I could!
Had to pay a fine in the past 12 months ✔ Fuck you, Brisbane Shitty Council.
Been honoured with fireworks ✔ Yes! My birthday is on New Year’s Eve, so for my 21st (which was held on NYE, of course), my folks organised the company who do the Brisbane city fireworks to stop at our place (we were living on the Brissie River) around 9.30pm. They left a whole lot for my Dad and our neighbour to detonate at midnight. Needless to say, they nearly blew themselves up. It was epic and people saw them from all across the city.
Gotten a piercing ✔ My nose when I was 19, not long after I got my first tattoo. My excuse is that I was in Byron Bay.
Gotten a Tattoo ✔ ✔ I’ve never felt regretsy about either of them.
Ever driven an automatic car ✔ Yep, but I’m a manual maven. Real chicks drive sticks.
Life. It gets in the way. That’s why I haven’t blogged for three months. There’s been a lot going on. That and I accidentally fell in love (a very happy accident) and for the last month or so, I’ve been down with the lurgy (the flu), but after two courses of antibiotics, probiotics, lots of vitamins, good food and rest, I’m on my way to being back to full steam ahead with my year.
Exciting stuff is happening. I’ve been asked to be on the organising committee for next years Spiritual Care Australia conference which will be on the Gold Coast. As a pastoral carer who identifies as ‘spiritual’ but doesn’t belong to a specific faith tradition, I was so heartened to be asked. I am yet to make it to a meeting because I’ve been unwell, but I’ll make up for it in the months to come.
I cut my hair off last week. It’d been falling out at a rate of knots (ha), and having had it cut shorter, it seems to have stopped. Just like that. It feels strange to be so short (yeah, I know it’s still long, but it was ridiculously long). I’m feeling … fresher. Yeah, that’s it. Fresher. Younger too, which is interesting considering I’m pushing 40. I took this this photo after I rolled out of bed for my hairdresser. I know I look a little grey, but that’s what you get for not giving a fuck about makeup or puffy eyes.
So, here is what’s been happening with me …
Making: Crocheting my first blanket. There will be crying Nicolas Cage style, fist pumping and gallons of tea. My maternal grandmother who taught me how to crochet when I was a little girl would be chuffed.
Cooking: Chicken soup and green smoothies (consuming them separately, of course).
Drinking: Tea. Endless cups of tea. And kefir. I cannot get enough kefir with a generous dash of honey and cinnamon.
Wanting: A cabin in the woods/hinterland.
Looking: At cabin porn (there’s a theme emerging, yes?). Clouds at sunset, too.
Dreaming: About toasting marshmallows on the burn pile at the farm.
Playing: Diabetic Wheel of Fortune.
Deciding: What the fuck to have for dinner.
Craving: Sweet milky tea, liquorice and normal blood glucose levels (which are incompatible with scoffing liquorice)
Wishing: I was living in northern NSW. I feel between worlds. Or like I need a bridging visa or something.
Pissed: That I caught the flu and it’s still affecting me a month later … Get the fucking fluvax, people.
Enjoying: My growing collection of minerals. Or crystals, if you want to call them that.
Waiting: On more words to come. I know they’re there.
Liking: The unfurling of cooler climes. It was a long, hot summer.
Wondering: If I will ever get this novel finished … #yesiwill
Loving: My new balcony chairs. They are epically comfy.
Considering: Spinning wool, falconry and starting my own religion. The latter would be far more lucrative.
Reading: ‘Norwegian Wood’ by Lars Mytting, ‘Gathering Moss’ by Robin Wall Kimmerer; ‘Konmari’ by Maree Kondo; ‘A Ted Hughes Bestiary’ and ‘Hildegard of Bingen’s Medicine’ by Doctors Strehlow and Hertzka.
Buying: Nothing. I’m Konmari-ing the fuck out of my place. If it doesn’t bring me joy, it goes to charity.
Watching: I just watched ‘Dear Zachary’ and it made me want to cry forever and ever. It’s the most powerful film I’ve seen for some time and will leave you reeling (and needing therapy).
Hoping: That my friends Andrew and Chief get donor lungs soon. They both have CF and have had way too many false alarms which is cruel, disheartening and emotionally exhausting. IT’S A GOER FOR CHIEF ON THE SIXTH CALL UP! He’s doing *incredibly* well
Pondering: How amazing life is being clean. I never thought I could feel this happy. Seriously – have I EVER felt this way? Halcyon days
Marvelling: At how music makes me feel ALL THE THINGS.
Cringing: That my Jeep needs a new gearbox. Oh, the horror.
Needing: A capsule wardrobe.
Puzzled: That I hardly ever drink coffee anymore.
Questioning: Why so many crap writers get published. I guess mediocrity is trendy.
Smelling: Not much. Since having the flu, my sinuses have been blocked, but today my olfactory senses happily returned and oh! The smell of toast, freshly laundered sheets and chai simmering on the hob – glorious.
Following: My gut. And Marie Kondo. She’s rad.
Wearing: Mecca lip balm. I cannot get enough on my mouth.
Noticing: That I really need to clean my windows.
Knowing: My purpose.
Thinking: I have SO much to do.
Seeing: An overabundance of cranes across the city. All very phallic.
Believing: In fairies and the little people we can’t always see.
Sorting: Through my possessions and giving a lot of stuff away. Liberating much?
Getting: Organised to launch a big community project that I can’t tell you about. It is super exciting and slightly terrifying knowing that a friend and I are putting ourselves on the line for what we feel, is for the greater good.
Gathering: Resources and support for said project.
Cultivating: Kindness, candida (thanks antibiotics!), and garden ideas.
Bookmarking: Where do I start? Psychedelics in dying, extreme knitting, cob houses and the small house movement, India, birds of prey & falconry, granny squares, aromatherapy, firearms.
Disliking: Where my neighbourhood is heading. Think big corporates moving in, mass gentrification and hideous high-rises that hopefully no one will want to buy. I foresee a glut.
Coveting: A spell that makes me write 10,000 words a day, knowing full well that no such thing exists. The only way is ass glue and a warm teapot at my elbow.
Opening: Bottles of kefir like they’re going out of fashion.
Giggling: At finding feathers at the most serendipitous of times. My mantra of ‘look up, look down’ has been serving me well.
Feeling: Ready to replant my garden with the help of Mum’s green thumbs.
Snacking: I wish it was medicinal liquorice, but it’s raw veggies with cottage cheese. Don’t knock it ’til you’ve tried it.
Helping: Shit stir the big developers who are trying to ruin my community and create change by lobbying, petitioning, opposing etc.
Hearing: Fleet Foxes and the noble chatter of crows.
A couple of years after my transplant, I was assaulted. Had the shit beaten out of me. What made it even more shameful, was that I was beaten up by a girl. Of course this rationale has evolved with the gradual unfurling of my life and hard won wisdom, so I know that it doesn’t matter who hits you. Girl, boy, woman, man – it’s violence and it should never be tolerated.
So here’s some back story: I had been at a Cystic Fibrosis luncheon (as was tradition) and I admit that I was intoxicated during the day, but stopped drinking early afternoon. Around dusk, my friends and I hopped on a ferry from Southbank to go to a friends place at New Farm. I was feeling clear headed and had been drinking water for quite a few hours.
When we arrived, there were quite a few people we didn’t know, so we sat around in a circle (old hippie habits die hard), and I got to talking to a guy about where we had been. He seemed friendly – long red dreads, not quite a hippie, but more of what we would call a ‘feral’ (terrible term, I know, but it was a term nonetheless). I explained that I had CF, to which he responded, ‘you look really well,’ so I told him that I had had a transplant and he commented that I probably had some wicked scars.
We engaged for about twenty minutes, but things started to get a little strange and off topic, so I excused myself and walked away. This man’s wife who I thought looked really friendly, for she too had long dreads and was wearing Doc Martens which transported me back to my youth – had seen us talking, and as she turned towards me, a storm rose in her face and she asked me what I was looking at. I replied, ‘absolutely nothing’, picked up some grated cheese that was on a table with some other snacks, and threw it behind me as I walked away. I wasn’t aiming for her, but it was her perception that I was.
The next thing I remember, she was on me and I was up against an old car; punching me in the chest and ribs, and then grabbing my head and smashing it into the car window. My first thought was to protect my face – I was wearing glasses after all. Then a horrific thought crossed my mind – that my head was going to be smashed through the glass (old glass that shatters, NOT safety glass that sticks together), so I just took it.
She smashed my head into the window so hard that my glasses flew off, she lifted me up against the car so that I lost my shoes, and my friends were behind her screaming to leave me be. The thing is, she was Amazonian when I am not, and she just kept the blows coming. Her husband eventually dragged her off, but she was trying kick me in the face. I copped a boot to the chest which took the wind out of me, and I stumbled away while they got in their car and took off. Then they came back. After about fifteen minutes (we were still waiting for a taxi at this point to go to the police station), I saw her get out of the car, light a cigarette and walk back to the party as though nothing had happened. She was so oddly blissed out and mellow, and my educated guess was that she had had a hit of heroin or something similar which had calmed her down.
I don’t fight dirty. Never have, never will. When I was going in high school, my Dad taught me how to box; how to protect myself even though (or because of) I was going to an all girls school. And so that night, I didn’t fight back. I went into protection mode. If I threw some grated cheese behind me that she mistook for deliberate hostility, making her believe it was ok to beat me up, then that’s on her.
My dear friend M (who happened to be a lawyer at the time) and I went to Police Headquarters and I wrote down a preliminary statement. My memory was pretty fresh, but I was in shock, so the statement was brought up in court as being ‘contradictory’ to my official statement that I made about later that week.
When I got home, my Mum took photographs of the bloodied scratches and bruises across my chest and neck. Even more concerning was that I had had a central line removed just two days before and she had scratched the scab off it and drawn blood with her fingernails. Later that night, I struggled to sleep because the attack kept playing like movie reel in my head – a punch here, a kick there.
When I tried to get out of bed the next day, my whole body ached like I had a really bad flu, so I called the transplant unit and they said to come in straight away – I needed to be checked out, x-rayed and have bloods taken. I could barely move and because this girl was possibly a drug addict, I had to be tested for HIV and Hepatitis because as I mentioned earlier, she had scratched the scab off my CV line and drawn blood. I had fourteen x-rays, was checked out by a physiotherapist and then I went home to rest.
It felt like an age waiting for my blood results to come back, and I admit that I was feeling pretty distressed. When they came back clear, my doctor, family and I were relieved to say the least.
The worst thing about the whole situation was that the woman who assaulted me was in the care industry. She was an occupational therapist at a major metropolitan hospital and she knew that I had had a transplant and therefore was a ‘soft’ and vulnerable target. My transplant consultant wanted her struck off immediately, but somehow that didn’t transpire.
Court was brutal and unforgiving. I felt so terribly guilty that my friends had to testify, but I was determined that this person was to be accountable for her actions. Her husband arrived at court wearing no shoes and repeatedly walked up to the courtroom to listen to proceedings when he shouldn’t have. The lovely detective who took my official statement didn’t think this was right, so he was given a warning to stay away or go elsewhere.
When I had to get up on the stand, I had strips torn off me by her lawyer (I still remember his name), and he manipulated what had happened on the night, where I was a cheese-throwing bitch who provoked the attack. I know that’s what lawyers are supposed to do, but a few minutes into the cross-examination, I was a bawling mess. In fact, he was very capable at making me feel like shit, but I was lucky enough to have the states top DPP who representing me. I also had a wonderful and compassionate detective who actually gave a shit about what had happened. My lawyer made a very strong argument that she was a violent offender, and after an arduous day of court, Mum and I hopped on a train, but as we were nearing home, we were called back.
I had to get on the stand again, and to cut a long story short, the woman who assaulted me was found guilty of grievous bodily harm which meant that she had to pay me a reasonable sum of money and complete 200 hours of community service. What upset and disappointed me the most, was that there was no conviction recorded. In fact, I would have happily done away with the money in place of a conviction. The fact that this person was an occupational therapist working with vulnerable people and who possibly had a drug problem disturbed me greatly.
For the first few months after the attack, I was constantly checking my back, especially when I was at uni. I didn’t feel safe and that really grated me. It lowered my self-confidence and even though I was already hyper-aware of my surroundings after being with my Mum when two piss poor excuses of men who mugged her tried to run her over in a carpark when I was fourteen, I became a little paranoid for a few months and was always at the ready to fight. My nerves were shot, and even someone running behind me was enough to set me off and put me into fight or flight mode – mostly fight mode where my fists would curl instinctively until the perceived threat had passed.
Looking back, I was so incredibly naive to think that these people were good people. I’ve always looked for the positive in everyone I meet, and while it was a hard lesson to learn, I refused to let my assault dictate who I engaged with, and soon I was feeling more positive about interacting with humans I did not know – I was just a little more selective.
The entire process, from the assault to the court case, exhausted me and my only real escape was studying for my creating writing degree, which ripped me back to my youth where study was my escape from all of the death and suffering that was all around me on an almost daily basis when I was in hospital. Friends deteriorating before my eyes, friends dying, trying to help said dying friends die a more comfortable death, seeing kids pinned down so doctors could shove in an IV or a nasal-gastric tube for feeding. The word brutal comes to mind again.
I rarely think about my assault, but something a couple of days ago triggered a surge of memories, and I wanted to write about (and share) what happened. Violence is never the answer, and instead of being embarrassed about not fighting back, I’m proud that I protected myself as best I could and that I walked away with grace and my dignity intact.
You may ask why I didn’t just let it go and not report it to the police. I was always going to report it to police because I was raised to believe that everyone needs to be responsible and accountable for their actions. I found out a few years later that her marriage ended. Did that make me feel good? Temporarily, yes. Now? Not so much. Did I want something awful to happen to her after she assaulted me? Yes. But then I learned that when you dig a grave for one person, you need to dig another for yourself, and that held no appeal for me. Do I hope that she’s now ok? After my own addiction issues, yes. More than ever. I forgave her a long ago, but I will never forget the physical, emotional and spiritual pain she put me through. Spiritual pain? Well, that’s another blog post entirely …
So how’s 2016 treating you so far? I’m deliriously happy to report that mine has begun like no other. Strange things are happening to my body and I’m rising earlier than ever (think 4-5.30am). I’m off the valium I was taking for my restless legs, and I think what has happened is that my body clock has done a complete one-eighty since I’ve been off the suboxone.
Being awake and present in the morning is such a gift, and while it’s something I’m still getting used to, it’s something I want to get used to. Dawn and dusk are the best parts of the day, and I’m getting so much done. I’m also suitably tired enough to collapse into bed only to go straight to sleep early in the evening.
I was to go to yoga with my friend Natty D. this morning, but alas, I could not find my yoga pants, so I’m in the process of turning my wardrobe inside out and donating a whole lot of clothes to charity. For me right now, less is more – unless it’s tea.
Speaking of tea, I caught up with my beautiful Bec yesterday (I have two beautiful Bec’s in my life – talk about being blessed), where we shared too much good food and did a gift swap. We’re both Capricorns, so if you’re into astrology, that needs no explanation. She’s part of my tribe – a ‘soul sista’, if you will. We giggle a lot and have debaucherous conversations. She has been one of my biggest and brightest supporters and I love her HARD for her open heart and willingness to cry with joy.
She’s also obsessed about India, is a full time sari wearer, and with her husband Alex, has just spent close to a month in their beloved India. I was thoroughly spoilt at lunch with a bag of Chai Marsala from the world famous Abraham’s Spice Garden in Periyar. I’ve been having rabid fantasies about this chai mix ever since Alex made me a brew last year. Along with some black jasmine oil (which apparently smells different on everyone, so it should be interesting to see how it smells on my salty skin) and some loose green tea from Mumbai that came in a beautifully carved wooden box with brass elephants, I was feeling a tad emotional.
I have a few sacred places that I visit – the farm, Barcy, Carmel-By-The-Sea and Byron Bay (even since it’s been heinously gentrified), but India is a land I’ve wanted to visit ever since I can remember.
Have you ever had a place you’ve never been to pull on your soul? Like really pull on your soul? Well, for me, that’s India.
I can hear the call of the Ganges plunging into the Bay of Bengal, the spice plantations, the temples and its people. I have some stunning books on India I reflect on often, and a couple of years ago I wrote ‘India. I weep because it is there and I am not. And I weep because I may never get there.’
So what’s holding me back? I’ve never had any luck with travel insurance, and getting sick in a developing country with transplanted lungs would not be ideal.
But what is life if you don’t get to experience it? What is life without a little risk?
Until I get to India, I will always be a falling leaf looking for a place to land. And so I am going. I have two years to save, plan and research with my doctors, read and observe and get my body into optimum condition. I’m going to be with Bec and Alex who know the country, have researched hospitals for me (bless) and know where to eat, stay and how to carve out an authentic Indian experience.
We will celebrate Bec’s 50th birthday in Udaipur, and I’m planning on staying for a few weeks. Why go halfway across the world to what I believe is one of my spiritual homes or places of spiritual refuge, when this might be the only chance I get? So it’s off to the Ganges to gently dip my toes into its waters, spend a day watching the funeral pyres, meet some sadhus (holy men), meditate in an ashram for a few days, catch a train to Varanasi, shit myself as is per the authentic Indian experience and go on a two week tour.
I’m well aware that travellers often have a romanticised view of the places they visit, but I know that India isn’t all palaces, ashrams and markets. India is a country of immense poverty and suffering, so my ultimate India experience would be to volunteer at a hospice. I figure it’s the least I can do as a human being.
But back to the farm. Every year, Ben and I give Ganesha a de-web and a rubdown with dubbin. As we worked on Ganesha with lots of love (and dirty jokes), I felt connected and uplifted by this act of ritual and worship. I rubbed his belly with reverence and love, and massaged his hands like I would a fragile human.
OH, THE REVERENCE …
Shiny, happy Ganesha!!
On the third day of the New Year, I drove from the farm up to my folks place at Mooloolaba where I was greeted by this vision.
I spent a beautiful afternoon wandering around and sucking back veggie juice, then I walked down to the beach to bless my 2016 gratitude stone that I’ve added to my medicine bag. Then I meditated. You get some odd looks when you close your eyes and stay perfectly still for extended periods of time. I just smile at people and get a smile in return – what a gift that is in itself. Spending time alone doesn’t mean I’m lonely. I spent so much time alone as a child in hospital that I’m an ace at it, yet so many see being alone as wasted time. Redundant time.
Why not surround yourself with people?
I like to pose another question – why not surround yourself with YOU? Why not be comfortable in your own presence and hold the space for your body, mind and spirit. For me, the rewards of being alone are constant and ever changing. It restores me back to calm and peace and a surrendering of sorts to the universe and it gives me spiritual sustenance in a Waldenesque kind of way.
The true waste is this – waiting for someone else to fill your cup. Don’t wait. Fill your own cup with your dreams, memories, plans, loves and adventures. No one truly knows what you know about yourself except you, and that is something really special. More special than you may ever realise.
When I’m alone right now, this is the place I’m dreaming of and making plans for – the Bhaktivedanta Hospice in Vrindavan. To say it inspires me is an understatement of gargantuan proportions. Here’s what it’s all about. Also, here’s to conscious dreaming …
Yesterday I turned thirty-nine – a stage of life I never thought I would or could ever reach from when I was was a little girl, to when I had my transplant and certainly after I survived cancer. Each year is such a gift, and age is a privilege.
Lungs in perfect working order for seventeen years? √
Cancer in remission for eight years? √
Two years clean? √
Haven’t lost my mind? √
Yesterday I made the drive down to my friend Nic’s farm after I’d caught up with my folks – the people who have helped shaped me into the person I am today. I love them SO HARD.
Once I got to the farm, an overwhelming sense of peace washed over me until Bert and Harry (N & B’s dog sons) greeted me with whipping tails, over eager paws and a whole lot of tongue. We celebrated my birthday and it was an afternoon and evening of oodles of love, laughter, joy, amazing gifts and spectacular food. In four words? It filled my cup.
I felt full. My soul was full. My belly was full. My spirit was full. Nic and Ben remember when I was stuck in the repulsive cycle of addiction, and now to see me free, happy and awake – truly awake – makes them feel pretty damn proud.
My gratitude stone is mine and mine only and it is strikingly beautiful. At first I had mixed feelings because I’m not an avid fan of red, but with its base colour of deep rust which reminds me of the outback, and the gentle swirls of pink, cream, black and grey, I ventured inside this stone today during a meditation and it was a place of safety, healing and spiritual refuge. And rainbows! And we all know rainbows fucking rock.
So why am I telling you about this? You see, Nicole has created a planner called the ‘Year of Me Planner’. Now, whether that’s manifesting energy, magical engagements or masterpiece enactment (all Nic’s words), it’s your opportunity to make the most of the energies of 2016.
I was lucky enough to receive the year long online course and planner to the ‘Year of Me’ from Nic for my birthday, and I just about hyperventilated with excitement. I’ve been working on it most of today and it has soothed my soul. The Year of Me Planner allows you to create your own map to connect to your intuition, intentions, power and purpose. Sounds a bit hippie? Whatever! I’m excited that it’s a little witchy and really fucking sensible. Here are the tools I’m using for 2016 … That’s right – oracle cards! I’m a hippie from way back …
Nicole created this planner because she wants to help people plan, create and achieve their dreams with passion and precision. A one year online membership means that you’re part of a supportive online community with Nicole at the helm. It’s a beautiful safe space, and what people have shared today has been quite heartening and a little emotional. It’s only day one, and I’m feeling ALL THE THINGS. So here’s the link to her website and the Year of Me Planner. DO IT.
I’m just about jumping out of my skin. I had my first good night’s sleep in eleven days, so I’m feeling rested. I’ve been waking up around 4-5am, which is not the norm for me. I’ve never been a morning person, though when I first moved into my beloved flat I became one of those morning people. I’d brew a coffee, take it out onto my balcony and look out on the morning. I’d managed to draw a line between happiness and appreciation – a thickly painted line, slapped on with a wide, bristly brush and broad, unsteady strokes. I’d fill my lungs with air, celebrating the beauty and freedom of breath.
Every Saturday, I’d walk to the bakery where I’d treat myself to one or three of these great big, hunking German doughnuts. I’d have a chat to the ‘bakery dude’ and toddle off home to warm my doughnut (that’s not a euphemism in case you’re wondering) and sit down with the the weekend papers and a cuppa. I’ll admit it – I’m a girl who loves ritual.
For the eighteen or so months I was high, I slept and became a shadow of myself. I sliced myself thin and was just burrowing my way further into the rabbit hole. I wasn’t achieving anything because being high precludes you from being productive in any way, shape or form. They were wasted years, and years I didn’t have the right to waste. I’ve been on borrowed time since I had my transplant. I know that. But now that I’m off the gear, I’ve been wondering if this is what my life will be like now. Is this what my life would have been like had I not been addicted to drugs? Early mornings full of joy instead of the dread of where my next fix was coming from, believing at first the medication was somehow ‘healing’ me. The drugs did help for a time when I was using the medication for legitimate pain, but they soon owned me, and it was as though I had taken out a loan I could never repay.
My pleasure senses were dulled to the point where I just wanted to take my next pill and I was suffering – truly suffering – from anhedonia, which is when your pleasure receptors basically switch off. My brain wanted what my brain wanted – more of the same. There was no joy, no moments of natural euphoria and constantly exhausted. I couldn’t write, and had trouble reading.
When I was rationing tablets in Barcaldine in 2013 (and getting restless limbs/akathisia), I knew I needed help. I started researching what drugs do to your brain; I was already well aware what they had done to my spirit. I looked at Narcotics Anonymous, and soon worked out it wasn’t for me. I found my addiction therapy doctor and the rest is history.
I’ve mentioned this before, but when I did my TEDx talk last year, I was unable to learn my twenty minute speech which was incredibly distressing. My brain was still recovering from drug abuse and I still don’t know how much the drugs have impacted my brain function. I had some pretty hairy moments when I’d taken too much oxycodone and my respiratory system became depressed. I had heart palpitations and I recall giving myself CPR for about twenty minutes one day after I had overdosed. I was in acute tachycardia and I don’t know if my heart has been damaged. It still shocks me that I was not found dead.
For me, having a terminal illness gave me an acute absence of fear. I grew up fearless and loud and fierce, and I took more risks because a terminal illness is like having permission to engage in risk taking behaviours. It’s well documented that people with terminal illnesses take more risks than people who don’t have a closer ‘use by date’. There’s a sub-culture of the fearless – tattoos, collecting ‘dangerous’ pets, dangerous friends and even dangerous habits. I know a lot of people with illness who favour driving fast cars and adrenalin sports. But you also seek your own truth and authenticity, which is far more admirable. It’s that whole, ‘do no harm but take no shit’ dictum.
I’ve been asking and answering a lot of questions about myself of late – a little introspection, if you will – ruminating over what my life would or could have been like had my addiction not consumed me. But it did, and I’ve never been one for having regrets – for me, they’re lessons. Regrets paralyse your present and your future.
And another lesson – age is a privilege. I turn 39 tomorrow and every extra year has been such a gift, and I am revelling in moving on with life armed with respect, gratitude, boundaries and a sense of responsibility to NOT FUCK UP. The good news is that I can’t see that happening because I’m in the midst of a passionate and fervid affair with my life, my friends and family, my writing and my work. Speaking of friends, on Sunday night, I went out with three of my nearest and dearest – one friend I went to both primary and high school with. It was pretty bloody special!
Tomorrow I’m driving down to my friend’s farm in northern New South Wales where we will celebrate my birthday and turn the sod for the new year. The silence, nature, that grasp of acuity, the Murray Greys and the trees that are embroidered with birdlife are a panacea for city life. And just so you know, I’m not into resolutions – I’m into revolutions. At the end of the day, we are the product of our choices.
Have a Happy New Year, one and all. Big, BIG love. Oh, and here’s a little poem I wrote. It’s untitled and I wrote it about twelve years ago the day I left Canada to go to see my friend artist George Bleich in Carmel-By-The-Sea. Here we are back in 2003 and here is my tree, The Lone Cypress. Now that’s another story …
Firs only sleep
when branches draped in white
fall with frigid arms, then pitch upward like an angry child
when the sun passes through them like a mood;
never knowing to swing a bitter heat to pat down the ground below
Always expect the unexpected. Be prepared. That’s always been one of my life’s mottos. After taking my last ever dose of opiate antagonist therapy last Friday, I was relieved when I only had some minor restless limbs that night when I turned in for bed. I had been on the lowest dose possible, so I was never going to have mad restless limbs, right? Um, no. How very wrong I would turn out to be. On Saturday night I drove up the coast for a prawn fest and I confess that I didn’t sleep well. I only had a couple of ‘punches’, in that my arms went a little haywire and my legs were sore, but it was nothing I couldn’t handle.
Sunday night was hell on earth. My legs were kicking uncontrollably, my arms were punching like I was in the ring with Danny Green (I would have been half a chance, too). Good old akathisia AKA restless legs had consumed me. Even my chest was doing the pop and drop. At first I read about what I could do to alleviate the horror, but after a few hours, I was in a really bad place. In fact, I would have called myself ‘stricken’.
I tried laying on the floor. I tried massaging my legs. I tried jumping. I tried stretching. I swore – a lot – and then I cried. I cried with fear and frustration. Basically, if I was a crab, I would have kicked my flesh out of my shell. Instead, I took a dose of buprenorphine hoping it would calm my body and I’d stop kicking like a cocky prize fighter. Thankfully it did, but these decisions carry a cost and so I felt like an abject failure. The last thing I was expecting (or wanting) to do was to ‘dose’ again, but it was all I could do after a few hours of kicking the shit out of the air and blankets and becoming increasingly distressed to the point where I actually thought it was going to kill me. I guess panic and great suffering will do that. Ah, the bitter taste of defeat.
After discussing some options with one of the pharmacists from the transplant team the next morning, I went to see my GP who was happy to prescribe me with a muscle relaxant, but we were also keen to try tonic water for the quinine, epsom salts baths, magnesium therapy and then the muscle relaxants. A bath, coupled with Nina Simone soothed me greatly, and the quadruple therapy approach worked a treat. I slept. Not a single twitch. In fact, I woke up smiling.
But before I slept, I had to get over myself and my feelings of worthlessness and failure. My doctor (another wonderfully caring doctor who should be a doctor), laid my feelings of failure to rest after assuring me that I’d done incredibly well and that these things happen. They may be unexpected, but they happen.
I wish I could be far more noble and say that the suffering was worth it, but I wouldn’t want anyone to go through that level of suffering. Last night, I managed to drop my dose of muscle relaxant which I see as a win, so I’ll aim to decrease the dose again this evening.
It’s awfully liberating having a full bottle of diazepam in my possession, and not feel at all inclined to abuse it. I actually couldn’t think of anything worse – those feelings of failure simply aren’t worth it, but I’ll tell you what IS.
Today I walked into the chemist I’ve been going to for just over two years where I saw my favourite pharm-boy for the last time at the ‘junkie counter’. Let’s call him D. D was so bloody happy that I’d been able to stop taking the medication and didn’t need any more for the rest of the year. I’m officially off the books! Another lovely pharmacist who had dosed me a couple of weeks ago also passed on her congrats. D and I shared a big hug and we had a chat about Christmas. Hugs are better than drugs, people! Here I was thinking they’d be glad to see the last of me, but I’ve promised that I’ll pop in and say hello when I’m passing by. Here’s hoping the hugs are requisite with each visit.
I must extend my gratitude for being treated with respect and not as a person of failure and inadequacy who didn’t deserve kindness because of my addiction issues. The pharmacy I go to treats everyone with the respect they deserve and I’ll never forget that kindness, compassion and how they never brought my dignity into question.
This evening I’m feeling less of a failure and more like a warrior; a survivor. I managed to do 95% of my Christmas shopping in record time yesterday and right now I’m working on a elegiac poem for a fellow poet and friend who died last year. I miss him. I miss his humour, his spirit and his ability to turn a few words into masterpieces. The tug of death was too strong for Matthew, and the world is a poorer place without his presence.
So I guess this is where I wish you all a Merry Christmas even though Christmas can be an incredibly challenging time of year for many of you. My hope is that whatever you choose to do – or not do – makes you happy and settles your soul. This cover of The Boss’s ‘I’m on fire’ by Matt Andersen always moves me. Big love to all.