Tonight as the waning moon floats between shelves of cloud – the stars liquid and alive – I will whisper, ‘I am still here.’ A bittersweet offering, but one I cast into the world as a call to arms.
With each passing year, I harvest guilt, siphoning off grief as I pick the fruit and plant more seeds for the following year. As I stand under the beating sun, I divine my contrition and cast myself as an apostate, as a modern heretic; nothing but a taker. These aren’t empty postulations. In fact, they are very real, for I’ve watched most of my friends die, and I watch now as others are dying as they wait for a donor that may never come. I should be dead, and be dead many times over, but I am not. Thoughts like these catch my untrammelled breath, lodging like a barbed pip in my throat.
I think of my family, my friends and my lover in footholds of despair as we braced for the most terrifying, yet exciting news of my life. Then comes the horrible realisation that one family has had to say goodbye to a daughter, sister, wife and friend, while I was given a chance to resurface. It is a notion that can sink a person even with the best of intentions to live.
I have imagined my surgery thousands of times over – of being sliced under my breasts from armpit to armpit, my sternum and ribs lifted so surgeons could drop their fists into my chest to pull out my native lungs – sticky masses, black and Lilliputian, like little lung caricatures. My lungs are curtly dropped into a plastic bucket, and then the magic happens: you’re plucked from your watery grave of preservation solution, slippery as a placenta. Busy hands usher you into my empty thoracic cavity in a highly choreographed animation of fingers, clamps, retractors, clips, wire and sutures.
Twelve years on I was still tweezing the ends of old suture that had pushed their way to the surface of my skin, as though wanting amnesty from my beating heart. I would look at these tiny black slivers of silk under a magnifying glass and confide, ‘you’re a part of me’, keeping them until I felt strong enough to let them go. Closing my eyes, I would blow them away, never to be seen or touched again. Another part of me gone; my life in a perpetual state of mourning.
I don’t know why I am still alive. Is it luck or chance or something to do with planets aligning? Is it compliance? Am I one of the lucky ones whose immune system is unusually strong, or were you and I such a perfect and indomitable match, that failure was never an option? It’s impossible to say.
I have my doubts that we will be here in another 18 years, although my doctors assure me that there isn’t any reason why I won’t. There may come a time where I need a third set of lungs, but I hope that’s not the case because I’ve grown rather fond of you. In fact, I loved you from the start, even though you tried to kill me.
When you think about it, we’ve had an odd relationship. Where I shook the hand of death, you peeled me away from the death grip I was beginning to see as a friend. The first fortnight, we fought bitterly. I rejected you, or perhaps it was a mutual renunciation. Whatever the case, it was an education in terror and pain we both swiftly learned from, and we never fucked with rejection again.
That’s not to say we’ve haven’t had our fair share of shit. Cancer wasn’t one iota of fun, and you’ve gifted me lungfuls of air when I’ve sobbed through seemingly impenetrable sadness.
The scar under which you lay is now a pale pink seam of refuge, like still water beneath a bridge.
I love all five lobes of you equally, and I will always be your biggest champion. That you must know. Every year, just before (y)our transplanniversary, the weals of scar that have hardened into runes on my trunk begin to itch. I scratch, but it is so far beneath my skin that it cannot be touched. When ‘the itch’ presents, it’s as though you are trying to tell me something. It never fails to make sense, but not before I have scratched my skin until my breasts and that tender seam of scar are raw and streaked with blood.
I acknowledge that my life date is your first caretaker’s death date. The day she died, I returned to life, and ever since I have been making my way all slipshod through a special kind of purgatory. I needed to suffer before I felt worthy enough to commemorate my new life with you, and for many years, I have marked this day timidly, humbly and with a quiet voice. Maybe next year will be different.
And so today, there was no grand celebration. I chose to commemorate you and your original caretaker the best way I know how – by living my life. I enjoyed an ordinary day at work, because I’ve long preferred the beauty of the ordinary, because within that realm of normality, that’s where I chance upon the extraordinary. Ordinary doesn’t have to be mundane or insipid. That I can get out of bed, feed and dress myself, pull on my boots, go to work, and walk around the hospital visiting patients (an ironic reflection of my own life), double back to the bookstore, have a coffee and share a meal with my family is a day meaningfully and well lived.
Tonight I will light you a candle. The flame will thicken in the cool winter air, and I will give myself pause. I’ll sit on my balcony as a retrospective of the last eighteen years plays across grey hems of cloud, and then I will go to bed with a grateful heart.
Last month when I was beach combing, I found a miniature set of you. Two lungs, the structures of a heart and even the intricate plumbing of the carina of trachea. I held it against my ear and my ears filled with the gentle rush of waves pitching over pebbles.
I listen to you. There’s rarely a rumble. You have held the line and kept me anchored to this life and for that, I owe you everything.
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.
Life. It gets in the way. That’s why I haven’t blogged for three months because there’s been a lot going on. 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 group, I was so heartened to be invited. 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, I seem to have stopped shedding. 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 forty this year. I took this this photo after I rolled out of bed for my hairdresser. I know I’m looking a little grey.
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.
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 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 life. 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 don’t ever drink coffee in winter.
Questioning: Why so many crap writers get published. I guess mediocrity is on trend.
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 (sexy, right? 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, epigenetics.
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 within reach.
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 …
I made a big decision yesterday. I decided that I no longer need my opiate antagonist therapy. I had planned to stop on my birthday, which just happens to fall on New Year’s Eve, but I’ve been feeling so happy and settled that I knew I could do it. And so I did. The ‘high’ from not having to take the bitter pills I’ve been placing under my tongue for two years was unexpectedly immense. I felt as though I could scale a mountain. I danced and howled at the fireworks that are barnstorming the sky every night before Christmas.
But then the night’s hands stretched towards midnight, and I toddled off to bed where the inevitable withdrawal symptoms began to kick in. I was hot, then freezing cold. I had restless legs and my arms were flailing uncontrollably, so I clamped them shut between my thighs and dealt with it. Because that’s what you do when you make a choice.
I woke up early this morning feeling like I could swoop into the sky with those long gone fireworks, but now I’m a little tired simply because I’m functioning on very little sleep. I don’t know how long these side effects will last – maybe a few days or longer – but they beat being reliant on any substance EVERY FUCKING TIME. I ate a hearty breakfast, downed a legal addictive stimulant coffee and with my full belly and happy heart, I thought I would sleep, but I’m feeling so free and alert that I had to write.
The last two years I’ve been on Buprenorphine have been some of the most memorable and active, simply because I wasn’t wasting my life getting high and sleeping my life away. I got shit done – lots of it – and last year was an incredible year that presented me with some life changing opportunities. This year has been a little more sedate, but just as fulfilling, if not more.
A couple of weeks ago, I had my last appointment with my addiction specialist and we decided that I would stop taking the ‘bupe’ on my birthday so I could start the New Year clean and fresh as a daisy. I won’t go into the specifics of my final appointment, but it was rich with poignancy. I will miss my doctor’s wisdom and his ability to be transparent with the realities about my state of addiction. He has been such a source of encouragement, and when I last saw him, we hugged and exchanged kind words. He also gave me a beautiful healing stone which I’ve added to my mineral collection (or crystals, if you want to call them that).
After ruminating about the supportive relationship with my addiction specialist, I realised that I had met one of the finest doctors who had ever treated me, and I’ve met hundreds – maybe thousands – of doctors. I’ve met doctors who shouldn’t be doctors, but this man genuinely knows how to care for his patients. He knows that their – our – lives are in his hands. He was one of the very few people I trusted to show my TEDx talk to prior to speaking on the day, and he had nothing but lashings of encouragement and praise. He’s the kind of doctor and human being you want as your doctor. He was in my corner from the start and I couldn’t have done it without him. Behold the healing stone …
Peace. Joy. Liberation. THAT is how I am feeling today, and how I will continue to feel even through the flailing limbs and mad body temperature fluctuations. I will hold that feeling of pride close to me and that is how I will get through, because there is no other way.
I’m excited about a whole gamut of stuff right now, but I’m mostly excited that I can turn that bloody alarm off my phone that used to remind me to ‘dose’ at four-thirty every afternoon. No more alarms. No more bitter pills. No more lining up at the junkie counter at the chemist to be ‘dosed’.
I get to enjoy Christmas with my loved ones with no attachments, and while last year may be tough to beat (I had my sister back, and my parents, her and I danced the night away), I’m not out to break records. I’m here to live, love, be loved and give. It really is that simple. Yes, there have been deep feelings of shame I can attribute to my drug use (and lining up at the junkie counter), but like the scars on my body that whisper to me that I am a warrior, I’m more than happy to share my stories of how I have seemingly conquered my addiction to narcotics.
Now this may or may not interest you, but I’ve been reading a lot of peer reviewed papers and first hand experiences of how psychedelics are used in addiction therapy and to heighten spirituality with the dying. I’m more invested in how psychedelics are used with the dying, and while I wouldn’t do it myself due to the risks to cognitive function and the potential psychiatric issues, I’d probably give it a go if I was at the end of my life. While the potential for dependency is very low, what a ride it would be. Now have a look at this diagram:
I don’t do alcohol, nicotine and my intake of coffee these days is practically non-existent in comparison to what I used to consume. Prior to transplant, apart from morphine, I would continuously suck on nitrous oxide (Entonox) when physiotherapy became too painful. It helped, but it can cause bleeding, so I was closely monitored and as such never had physio again due to uncontrollable pain. When I was dying, all that mattered was that I was comfortable from both a physical and spiritual standpoint.
Now take a look at where Psilocybin (‘magic mushrooms’), LSD and Mescaline are on the chart. Very low in dependency. It never seemed to hurt Jack Kerouac or Sir Ginsberg and their prolific writing. Until it did. A slew of writers ‘graduated’ to speed, benzodiazepines – and the rest – which inevitably lead to this: ‘Kerouac took so much amphetamine when he first discovered the inhaler high that he lost most of his hair and his legs swelled up with thrombophlebitis.’ Not sexy at all. So while it aided their art for a while, it swallowed them whole and Kerouac was dead at the age of 47. I am eight years away from 47 and do not want to die, so to think I was addicted to narcotics like morphine and pethidine horrifies me, because after heroin, they’re at the top of the list with both dependence and morbidity. Pentobarbital (often marketed as Nembutal) is right up there, too. Nembutal is the choice drug for euthanasia, and cocaine is not far behind.
I’ve spoken at length with friends who have tried all manner of substances over the years: ecstasy, methamphetamine, mescaline and LSD, heroin, morphine, cocaine, marijuana and alcohol. That’s right – alcohol is also on the list with a level of high morbidity too. Is this a cautionary tale about drugs? Perhaps.
So enough of the horror for me. Instead, I am going to try to not be horrified with how close I came to death when I was using, but will tap into the subtleties of that emotion when I need to feel proud. Did I win the fight against drugs? Did I win the fight against CF and cancer? Not quite, and for a couple of reasons. I’ve never particularly liked or understood the militarisation of illness or death, and I don’t plan on using that model for how I got through my addiction. I GOT THROUGH IT. And I got through it with support, love, the right medication, meditation, music, writing and fuck off stubbornness. I can’t say that I single handedly came through the other side without help, but I did most of the work myself because I’m not one to ‘lean in’ – I never have been.
Having an addiction specialist and a supportive family was one thing and while I only told a handful of my closest friends, they knew from day one that the only way I get through the really tough shit is on my own. I attribute that to spending so much time alone in hospital once my Mum had to leave so she could love and look after my sister and my Dad. Being alone gives you a tremendous sense of temerity and independence, as well as an imagination to rival Tolkein (although I was never going to be as crafty as he was – not even close).
I’ve never been codependent on another person, and I don’t know if that’s a good thing or not. More often than not, I’ve reasoned that it’s for the best because I’ve always wagered that I will live the rest of my life alone. Except that I’m not. I want to thank everyone for letting me just be. For still loving me. For asking how I’m going. For always asking and accepting that wherever I am, no matter what may be happening, ‘I’m fine, thank you’, even when I’m not.
Endnote: this is what I strutted – really strutted and danced – around the house to last night. Because I’m feeling good.
I am loving this photograph of Amy Schumer by Annie Leibovitz for the 2016 Pirelli calendar. Beautiful and real, replete with her natural curves and belly. Amy writes on her Twitter account – ‘Beautiful, gross, strong, thin, fat, pretty, ugly, sexy, disgusting, flawless, woman. Thank you.’ No Amy, THANK YOU.
As a woman with Cystic Fibrosis, I’ve always had a belly (even at 38kg) that I’ve been embarrassed about. Why? The way women who have won the ‘genetic lottery’ are portrayed in the media are partly accountable. Compare the 2016 Pirelli calendar to the 2015 one of highly fetishised shots of ‘supermodels’, and there’s another answer.
I stopped reading ‘beauty and fashion’ magazines many years ago for a couple of reasons. Firstly, there was no substance in the writing, and I felt that the articles were trying to dumb me down even though they carried the token ‘be empowered!’ bylines. They made me feel as though I wasn’t in charge of my life because everything from my personality to my body, my diet and the colour of my skin had to be curated to please others.
The images in these magazines come a close second. They are photoshopped and airbrushed to within a pixel of their life, which is not telling you anything new. Over the last year, I’ve been celebrating my body more and more because it is strong, capable and really fucking incredible. This body with it’s bi-afran belly and beauty marks (scars) has been through dozens of surgeries and survived. It took me a long time to accept – let alone be proud of – my scars, and while these surgeries have shaped me, they do not define me. My body is unique, beautiful, capable and tenacious and that’s something I celebrate every day.
Like Carly, it got me thinking that I’ve been apologising all my life for things that are beyond my control. A prime example is when I would have massive coughing fits for the twenty-one years before my transplant. I would be in a constant state of apology – always to the person next to me (especially if it was a boy) even when they would tell me I had nothing to be sorry about.
But what was I actually sorry for? For not being able to stop the brutal evolution of my dis-ease? For not being able to stop my lungs drowning in mucous where the only way I could get any relief from the crushing pain was to hack up green and brown slugs, or red if I had had a bleed?
I’ve been in bed with lovers and have apologised for my belly and my scars. The thing is – I know they don’t care because orgasms are more powerful than any mark on my body. My scars are a testament to my survival. I started calling them ‘beauty marks’ long ago, but I know that they’re just scars and most humans have them – just maybe not as many as I do. Men are told ‘chicks dig scars’, but I’ve never heard anyone say ‘men dig scars’. These indentations on my body represent my survivorship and they tell me – and others – that I am a warrior.
But sometimes there are apologies you have to make. I’ve done a lot of apologising over the last couple of years because I needed to say sorry to my family for lying to them about my addiction issues.
I was brought up with a fairly strict hand, replete with a really solid set of manners, and maybe that’s why I’m such a passionate apologist. I apologise a lot to men for no good reason, and as a society we’re conditioned to say ‘I’m sorry’ when someone dies. How about ‘that really fucking sucks – what can I do to help?’ Because you can always help.
I was talking to someone on the weekend about Facebook and how my personal presence on there is very small compared to what it used to be. Instead of having 800 ‘friends’, I now have about 80, and a lot of them are for my deathie work. The reason I deactivated my profile and had a ten month Facebook hiatus after I did my vipassana was because I had essentially turned into many of my Facebook ‘friends’ own private therapist.
I love helping people – it’s my passion and purpose – but when people would message me to help solve their problems, I would do the very best I could until I became overwhelmed and needed time out. Yes, I feel guilty when people work out who I am on social media (I use a pseudonym) and send friend requests which I decline, but I can’t be everything for everyone. I won’t say sorry – I’ll just say ‘no thanks’.
I spend time with my family and friends and I hold a sacred and sometimes all-consuming space for my patients and clients. I have learned to let go and learning that was not an easy lesson. By establishing boundaries, I’m happier and feel more secure than I ever have both personally and professionally, and while I have this blog, there are many facets of my life that remain private – things people will never know.
2016 will be my own year of no apologies because I’ve done the hard yards and have owned my shit. I hope this post doesn’t sound intentionally angry, but I won’t say sorry if you think it does. I’ve only ever been able to be aggressive assertive with doctors who have lots of letters after their names because I’m terrible – really terrible – at confrontation. I am, however, very assertive when it counts, like when I’m sick and I need to self-advocate. I’ve advised several mums who have children with CF to ‘get their bitch on’ because sometimes, that’s the only thing that works. Here is my anti-apologist pictorial*:
I will not apologise for not being afraid of my own shadow or loving rock and roll.
I will not apologise for my pale skin or wearing a bikini with an imperfect body or the tattoo I have loved since I was 19. Or the vein mapping on the left side of my chest thanks to numerous DVT’s/clots.
I will not apologise for loving minerals. Or rocks, or crystals if you want to call them that. They give me strength, make me feel grounded and bring me back into my body.
I will not apologise for my bruises you CAN touch.
I will not apologise for enjoying using firearms in a controlled environment. And besides, if you need any organs, I’m a crack shot.
I will not apologise for NOT wearing makeup/face paint, or showing my vulnerability on the shittiest of days.
I will not apologise for demolishing a ginger bread house come Christmas time.
I will not apologise for only being able to draw rainbows and saying ‘fuck’ a lot.
I will not apologise for eating phallic themed desserts. Or any dessert, for that matter. Ok, ESPECIALLY phallic desserts.
I will not apologise for being a bit of a hippie and banging on my Tibetan singing bowl. I love ritual and ceremony.
I will not apologise for asking questions and seeking answers.
I will not apologise for taking bathroom selfies in hospital clothes after I’ve spent time in isolation.
I will not apologise for loving flowers. Any flowers.
I will not apologise for twirling. It’s my thing and sometimes it’s how I get through the day.
I will not apologise for hugging the shit out of my best friends at every opportunity. Or hugging anyone I like or love. I will not apologise for public displays of affection. If I really like you, I’ll hold your hand and kiss you wherever and whenever the hell I want, and I’ll never be sorry for telling you how I feel. If I tell you that I like you, then I *really* do, and that’s called being very fucking vulnerable. I won’t apologise for that, either.
I will not apologise for having a medical history that may scare you. It does not define me or my future, and if you can’t deal with stories about me at my ‘worst’, then you will never know me at my best.
I will not apologise for being a secular chaplain who is spiritual and does not belong to a church. I belong to myself and the people I serve.
I will not apologise for taking feet selfies, because they are my most redeeming feature.
I will not apologise for writing every chance I get.
I will not apologise for knowing my worth.
I will not apologise for loving my nephews so much that sometimes it scares me.
I will not apologise for my rad transplant scar and the free breast lift I got from Medicare (and my new vagina). They might be scars (I call them beauty marks), but they’ve made me into a FUCKING WARRIOR. So yeah, fuck ‘sorry’.
Earlier in the week, someone asked me what I’ve been up to. ‘Reading, writing, stuff …’ But mainly reading and writing, hanging out with my sister and my nephews, working, planning, walking and dreaming. It’s true – I’m an abject failure of a social butterfly, although I did actually go OUT Friday night to the opening of Brisbane’s The Soul Pantry – a fabulous florist in Newmarket you should visit if you live in Brisbane. I mean: TERRARIUMS. I am obsessed. Such a granny.
It’s my favourite time of year. Yes, I love Christmas and will be trimming my tree (and the rest) this weekend, but it’s summer that truly has my heart. I had a passionate relationship with summer in my youth – days of water-skiing, inner tubing and swimming at my home on the Brisbane river; meditating on the pontoon at water level, and slathering coconut oil on my body to bake myself like a ham.
But then I had my transplant which meant no sun. Or, I could have sun, but with a family history of melanoma, my immunosuppression and my wish for eternal youth, I literally took shelter and have been alabaster ever since. It took about fourteen years for me to re-embrace summer and over the last couple of years, I’ve rebooted my brain and learned to adore what I call my ‘Summers of Love’ once again.
This calls for the following:
A new swimsuit and rashie √
Bebel and João Gilberto on repeat √ (and Enya – don’t judge me. Did you know she has a new album?) √
The radio tuned to ABC classic FM √
Naked cooking, naked dancing, naked writing. Okay – just entire days spent totally naked √
Admiring the lights of the city – sometimes with clothes on – hoping no one has binoculars trained in my direction √
Writing on my balcony, watching and listening to the birds flying just out of my reach while the sun sinks behind the mountains √
Clandestinely skinny dipping in the pewl come twilight √
Mangoes, mangoes, mangoes √
Sunscreen. All day, every day √
Make friends with salad. Yeah, not convinced unless it’s covered in five types of cheese.
And so that is my glamorous life. I got all of the stuff I love and adapted it to my post-transplant, no sun life. November has been a pretty sedate month, and December is looking distinctly unremarkable. But I like unremarkable and ordinary and as much as I’d love to be in Barcy now, that trip will have to wait until another time.
My novel (set in the outback in the early 70s) is coming along (1200 words today – take that, Hemingway), an epic and covert poetry project is beginning to take shape and I’m working on a short story. I never write short stories, but the last one received a great review in the Sydney Morning Herald, so this in itself is miraculous.
I turn 39 on New Years Eve, and as with every birthday, I have no idea what I’m doing. Big changes can happen between now and then, but I seem to always escape to the country for my birthday. Last year, I spent a very sedate birthday at my folks beach house at Mooloolaba, and the two years before that, I stayed at my friend Nic’s farm in the hinterland of Byron Bay where we did we got our witch on and burned shit. Going by the year 2014 turned out to be, I can say that burning shit GETS SHIT DONE. I highly recommend it #manifestinglikeamofo
I’ve never spent a NYE at my place in the city and don’t know if I ever will. I feel in limbo with its frenetic pace – almost as though I’m shackled – whereas out ‘there’, whether it be Barcy or the farm or the beach, I am unencumbered and free.
Waking up in the quiet of dawn and going for a surf on the first morning of a new year is such a gift. There’s nothing that quite matches its intensity or sense of calm. Bobbing in the ocean for while, eating a solid brekkie, sinking into a good book, doing some writing of my own and going for a wander is my ideal. Simple, yet ideal.
But first I have get through Christmas, which isn’t to say that I ‘endure’ the festive season. Quite the opposite, in fact. I love getting my yule on and buying gifts for my nearest and dearest. I’m in full blown love with my new baking fruitcake tradition to the point where I’ve now had my fruit mix soaking in rum for ten days. When the weather cools down, I’ll bake.
As I type, it is 6.27pm. Cicadas embroider the air which will forever take me back to the vipassana I did in 2013. There’s the odd siren, barking dog and the bristle of leaves in the evening wind.
Over the next couple of weeks, my opiate antagonist therapy will whittle down to zero, so I’ve been thinking of how I can celebrate this milestone. I don’t drink, so I’ll most likely keep things unremarkable and ordinary, write down some words and walk along the river. I’ll open my arms up to the world like the protagonist in my novel did today and feel the salt building on my skin. Salt is something I’m quite fascinated by, and not just because it grows in little mounds on my skin in summer that I can season my fish and chips with.
While I have a humanities brain, I find the chemical breakdown of salt fascinating and beautiful. On their own, sodium and chloride are highly toxic. But when they come together, they create something really special. Salt is stable, non-reactive and compatible with life. Salt gets a lot of bad press, but on a hot day like today, I’ve gobbled down no less than fifteen salt tablets because I lose excessive amounts through my skin as a CF’er. Where you might have to cut salt out of your diet, I can dump it on my food in excessive quantities. Without it I become hyponatremic which can be fatal, but that’s enough histrionics for today.
Being able to be completely free of Suboxone is going to be absolute freedom. I’ve not had one craving for anything drug related since I started on the therapy in 2013, and that alone lends me a steady strength. Back when I first started lining up at the chemist at the junkie counter, I knew I had my addiction cornered. There wasn’t a part of me that didn’t want to be free from the slavery that is addiction and I knew that I would get here. How did I know? Because once I make my mind up about something, I get it done. Whether that’s being stubborn or just being really fucking determined, I’m not sure. Maybe it’s a potent mix of both. Knowing I had this beat from day one was essential for my recovery, and the day I take my last dose may be unremarkable and ordinary, but as I’ve always maintained, there is great beauty in the ordinary. Even when you can’t see it, it is everywhere. If you don’t go in search of magic, love or anything else you want in life, you will never find it. The Japanese philosophy of wabi-sabi is deeply rooted in revering nature, the everyday and its imperfections. It’s a state of heightened consciousness where there is beauty hidden in how you experience the world in its state of constant transience. The Buddhists were really onto something with their reverence for impermanence, so I urge you to embrace your wabi-sabi. If that’s not enough, then maybe some Roald Dahl will do the trick:
‘And above all, watch with glittering eyes the whole world around you because the greatest secrets are always hidden in the most unlikely places. Those who don’t believe in magic will never find it.’