A few months ago, I was driving to see a client, and as I always do when I’m on the Inner City Bypass, I quickly looked to my left where the Royal Children’s Hospital is. Or I should say, was. When I’d finished my shift, I drove back to the Royal, parked my car and got as close as I could to the site. I cried big, ugly tears, and had to take some deep breaths to ground myself. I took some photos and spoke to one of the traffic guys about my time in there.
Going back was not about burying my suffering. It was about bearing witness to the destruction of what had been my second home. That might sound hyperbolic, but it’s where I did half my growing up. It’s hard for people to grasp that I spent nearly half my life in hospital before I had my transplant. It’s about being there, grounding myself in the suffering that is still with me – the suffering that will always be a part of me, and when it comes to that suffering I’m not broken or stronger for it. I just am.
I don’t live in the past. I AM my past. It’s like that saying, ‘you don’t have a soul. You have a body. You are a soul.’
Just when you think you’ve released all the guilt, there’s a dark corner of me that feels I need to be there to pay penance for having survived when most of my friends did not. Sound stupid? Try living it.
This place is sacred ground for me and so many others. There were so many first and final moments on that land. I fell in love for the first time there and I never believed the time would come when such a place was torn apart piece by piece. The state government made that decision years ago when Anna Bligh decided to entertain her vanity project of a children’s hospital in South Brisbane because Brisbane had a perfectly good hospital and infrastructure at Herston because: politics. I can see the new children’s hospital from the place I’ve left (it’s revolting, just in case you were wondering), and I remember the uproar in the medical fraternity when the idea was initially tabled, both with doctors and patients.
Back in the 90s, I was in hospital for much of the construction of the ‘new’ hospital (the one that’s been demolished), and I also happened to be an inpatient when the Deen Brothers demolished the old hospital. If you live in Brisbane, you’ll know that the Deen Brothers were the go to guys who knocked down iconic landmarks such as Cloudland and the Bellevue Hotel under our despotic Joh Bjeilke-Peterson dictatorship. Under Joh, they demolished much of Brisbane’s beautiful heritage buildings from the 1970s and beyond, often under the cloak of darkness and surprise.
And so the Deen Brothers were given the job to demo the old red brick hospital buildings in 1993, and I was a fierce sixteen year old who took shit from no one so it was nothing for me to jimmy open a window so I could yell at the Deen Brothers ‘you heretic c*nts!’. I’d shout until I was literally blue, my face covered in the dust of my past, present and future. I’d do this as many times as I could during the day when I wasn’t studying or having treatment. I would rage and cry, and punch the glass separating me from so many years of pain and suffering. I would wait until they met my eye (because they would) and I’d rage and cry, and give them the finger. They must have thought I was a mad little girl, but they were just doing a job. Maybe I was doing mine, and the job of so many souls who had gone before me in those buildings.
I’ve often said that I don’t live with regrets, and that I live with lessons instead. But I do have one regret. I wish I’d got some bolt cutters to break into the old Adelaide Billing ward before it was levelled. I feel that regret in my marrow, and I have a recurring dream where I can’t get into the ward. But there’s another dream happening where I’m right there, seeing myself not being able to get into the ward. Sometimes I get in without the bolt cutters. The double doors open up slowly, and I can feel the cool, polished terrazzo under my feet.
I still have nightmares about its old lift that shake me awake, and leave me unable to get back to sleep. They’re cyclical, and after a watched the hospital being torn down, I had more recurrent dreams about trying to get into the old Adelaide Billing doors.
But with every ending, there’s always a beginning. The day before Christmas, I moved into my new house, and I’m beyond besotted. I can see the stars every night, there are trees as far as the eye can see, the birds sing to me every morning, and I think I have an owl after finding a feather from a Powerful Owl, which is curious because I asked for an owl to look over me at the beginning of the year. Sometimes life is funny like that.
And so, I’ll cast my attention to this new beginning with fairy dens, banana palms, owls, native hibiscus and old, thickly rooted jasmine. And yes, my new place has terrazzo floors …
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.
I am, right now, stuck in that stinking, mephitic mire that is grief. It is as though I am cemented to the one place. Just about everything hurts, and just about everything makes me cry. Some photographs arrived in my inbox around lunchtime, and that mallet of sorrow swung a blow so hard that I lost my breath. Tonight, my eyelids are heavy, and the circles under them tomorrow will make my face look overcast and I will feel bone cold despite the spring. I am finding that optimism is just one more step into fear, and that I am a heavy peg that just doesn’t want to fit.
On Friday morning, I’m getting out of the city for a few days to celebrate the birthday of one of my best friends. This time last year I was in Barcaldine and Nic and her husband were about to join me at the cattle station I was staying, where they got to meet my friend Meagan’s family. Meagan died from CF in May 1999. Her ashes lay in a granite boulder at the family homestead under a weeping willow, and I’m looking forward to getting back out before too long, for it is always too long between visits.
I haven’t written for some time, and in that time, one of my oldest friends has died from Cystic Fibrosis. I am yet to work out whether Sean is number sixty-nine or seventy, but I know that he would have preferred to be sixty-nine because he was a dirty bastard.
About ten days before I went down to Melbourne to see Sean, we had an incredible two hour conversation. I was taken aback by his energy. He was enjoying having his family at home with him before he went to the hospice where he would die. We talked about our fuck tonne of dead friends (because there is a fuck tonne); about his greatest loves, all of who had CF and had died long ago, and what we used to get up to as kids. He said that after all the friends we’d lost, he’d always wanted just one sign. ‘Just one person to come back so I know that there’s more to this. Just one person so I know they’re there’, he said. I told him about the visit I had from our friend Rachel Murphy when I was around six. He was stunned – and a little pissed off, I think. He just wanted there to be something. Just not nothing. I told him there was something; he was still very unsure.
When I got to Melbourne, my dear friend Camille picked me up from the airport. It was a Sunday, so we headed to a homely and hipster little place where we sat by a booming fire. Cam has also had a double lung transplant, and we shared an afternoon of secret women’s business by that fire. We CACKED ourselves silly for a couple of hours and both enjoyed some highly diabetic-unfriendly food.
By the time we got back to her place, it was night time so I thought it best I call Sean’s sister, Shannon. She asked if I could get there as soon as I could? He was fading fast and wasn’t expected to see through the night after having been put on a morphine pump that day. We had about a forty minute drive ahead of us, but it was Sunday – the traffic was light, but Cam still ran a red light did some quality organ donor driving while I willed Sean not to leave me without getting to say goodbye.
‘You’d better not fucking die on me’, I kept saying. ‘Don’t you fucking dare.’
We reached the hospice where I was met by Shannon’s husband, Troy. There were a few close friends and family in the waiting area who had spent some time with Sean, and Shannon basically pushed me into the room and said to spend as long as I needed. I walked into the darkened room. His breathing was fucked. I knew he was fucked. His mouth was open. I sat beside him and stroked his hair. I said quietly, ‘Hey Seany. It’s me, Carly. I’m here, sweetie. I made it.’ Not immediately, but after I’d said his name a few times and given his head a rub, he started to wake up. He said my name, and I just kept saying, ‘I’m here, I’m here mate. I love you.’
And then he began to talk. We talked about sex and politics; he said the entire front bench were useless, with which I agreed. Then, holding my hand he said, ‘Everyone’s here. Everyone’s here and they’re looking at you.’ He’d got what he wanted. A sign, if you will, and what a crowded sign it would have been. All of our friends, his early loves Rachel, Carolyn, and Leanne and his last great love, Veronica. I looked up and whispered, ‘Hi’ to acknowledge our friends who had surrounded us. I felt them there. The air was buzzing with an energy I’ve only experienced a few times in my life, and I silently thanked them for being there to ferry Sean on his way.
His sister Shannon and his friend Kate came in, and we had a Baileys. Sean wanted a Baileys coffee, so I gently placed a palm behind his head and encircled the other around the cup, which he swiftly brushed away, determined to drink it himself, HIS way. And here’s where I understood why. Here was a man – a real man – who had so desperately wanted to die with dignity. And to die with speed. I spent some more time with him, got the nurse to give him more pain relief, then left thinking that by the time I got to him the following morning, he’d be gone, or very close to. He told me he was happy, and I said I’d see him in the morning. Our last words were, ‘I love you’ – the best anyone could hope for. Camille drove us home and we had cuddles on the couch with her dog until just before midnight.
I didn’t sleep. My head may have felt like a medicine ball, but I was still in the room with my friend – and all of our friends. My body was buzzing with pings of energy, and I could see sparks firing off my skin in the dark.
When I arrived at the hospice the next morning, Sean was sitting up in bed, fully cognisant (think intelligent, rude and witty) and eating. He had not long ceased taking all of his medication and wasn’t having any artificial feeding so he could control his dying process and make it as short as possible. It was now I began to wonder how fast it would be if he was still eating and fuelling his body. When you’ve grown up surrounded by dying, and dying and death is your vocation, you tend to ponder about things like this. He ate his entire lunch; even closely inspecting the viscosity of the pumpkin soup. It was then I realised that he needed more morphine and a relaxant to make him more comfortable. The nurses agreed. I know the trajectory of a CF death like the topography of my own breasts, and so he was given a higher dose and by the time I left later that afternoon, he was quite sedated.
Not long after lunch, we were introduced to a lovely lady who was taking photos for the hospice who were updating their website. We were so grateful for the fortuity and relief it provided for those of us who were in the room. Sean had never been camera shy. Below is one shot that Sean’s brother-in-law took while we were snuggling. He cracked dirty jokes and grabbed my ass 😉 For someone who’s dying, I think he looks fucking spectacular.
When the shots from the photographer popped into my inbox today, I proceeded to completely lose my shit, particularly over this one, because I feel as though he is comforting me, when I should have been comforting him.
Sean never regained consciousness and died just after midnight on Saturday 9th August. I was able to see him one more time, but by this stage he was deep in the warmth of a CF coma. It surprised and upset me that it took him so long to die. What didn’t upset or surprise me was that he wanted to die alone. He didn’t want anyone seeing his last breaths. As usual, but most importantly and as he wanted, Sean was in full control.
Over the last couple of weeks, I’ve come to learn more about Sean than he had ever told me. Mostly because he was modest and we were too busy trying to outdo each other with dirty jokes. He was one of Stanford University’s ‘who’s who’ – an invitation only club of great minds from around the world. Doctors and professors spoke at his funeral in Melbourne, and on the 23rd August, we had a memorial for Sean’s Brisbane family and friends, so this was to be my first time as a celebrant.
I had been doing well up until I sat down for the photo montage that Sean’s sister Shannon had put together. When I saw the photos of his transplant recovery, I was fine. And then all of a sudden I wasn’t. I walked back to the lectern and expressed my excitement, happiness and cherished relief that Sean had received his second chance just seven days after I had received mine. The day before Sean’s memorial marked sixteen years since I had my transplant. I had felt strange for having celebrated it, and then guilty because I wasn’t celebrating and I was alive and Sean was not. I took a sharp intake of breath to seal off any more tears, but the levy broke and a rush of tears descended, which would have been awful for everyone there because I look like a drowned hog when I cry.
I’ll always remember Sean as the tall, skinny, lanky kid who grew up too fast, simply because of our illness and his place in life. I also hadn’t known how much he had suffered at the hands of bullies in school. I wanted to scream when I heard his brother speak of this. I wanted to know every last asshole who had teased or tried to fight him. I was enraged and devastated that this had happened to my friend and I began to feel indignant with the world. Why did this have to happen to Sean? I will never understand. Suffice to say, kids will be kids. And kids can be assholes.
And so here I am. Anchored to grief. In fact, my skin stings from it. The hurt trickles into every crack and it permeates every cell of your being. You physically hurt. You ache. It’s like ripping yourself off narcotics when you’re addicted. I thought I was prepared and now I don’t know how to go on, except that I have to. I have study to do, a body to nurture, books to write, a soul to feed, family and friends. I can’t help but feel like an empty vessel. But then I think about those who aren’t even close to treading water – the sinking stones of this world. I want to pick them up, but can’t. I’m in the water with them, but they’re out of my reach.
And you know what? Sean would be PISSED OFF. He may have wanted people to be sad, but not like this.
I can’t tell you exactly what happened Thursday night. But I can tell you that I saw a friend take her last breath. A friend who is supposed to turn twenty-one in twelve days. I will write about everything, but I won’t be sharing it, because turning off your loved ones life support is one of the most horrific things you can ever do, and now I’ve been there twice when two families have experienced it. And once is already enough for a lifetime.
I can say that I was with a beautiful and spirited family as their daughter, sister, granddaughter, niece and friend passed from this life and into her next. It’s an incredibly intimate experience. So delicate. Being present for the family meeting with the Intensive Care specialist who tells you that your friend was declared brain-dead earlier during the day and that no, none of her organs can be used even though she so desperately wanted to be an organ and tissue donor because she had been a recipient of someone’s altruism and kindness in the same situation only a couple of years ago as family and friends prayed and listened over and over to Nickelback’s ‘Lullaby’.
I’m sitting with Tameah’s family and friends in a bubble of grief where everything is a blur. I know grief needs time to breathe, but it’s like breathing through a straw and running with your eyes closed not knowing what to do, what to say, where to go, how to feel or how to be. Everything is magnified and flush, but not. I feel everything and nothing. There is a feeling of a vague dislocation. Of being broken. Of being put back together. Of putting other people back together. But I realise that I’m not broken; my spine is just a little curved and in time, I will unfurl. We all will. Or maybe we won’t.
It was like this: The machines were turned off. My mind spun off into a web of white, then nothing. After the heat, there was peace, and I was sucked back to the bed, and the heat and the peace turned into pain. Once I am beside her, I dab the corner of her mouth with a tissue, brush back her perfectly ginger hair I told her to never, ever dye, and take her petichiaed hand. The nurse clips a lock of her hair and brings in a plate of pink paint, because she couldn’t find Tameah’s trademark purple. She is gentle and unhurried, and the three of us – the nurse, Tameah’s partner Ben and I – try to roll out the perfect finger print.
Ben and I walk to the elevator, heads down, faces downtrodden. The doors close and I ask, ‘what the fuck just happened?’ Ben shakes his head. Later, when we hop into the lift alone, the lift stops. We’re not moving, even though I’m madly pressing buttons. Tameah’s spirit is already at work. The lift doors open and we wander out into the night.
Afterwards, there are times when I say out loud, ‘No, Tameah, no,’ as though in a state of confusion. Odd times like in the ice cream aisle in the supermarket, but more often than not, on the toilet. Because like Melanie, like Ed – Tameah wasn’t supposed to die. And she wasn’t supposed to die like this. Not on life support. Not just before her 21st birthday where there were several gigantic surprises coming her way. Not when she was about to start photography college.
But back to ‘Lullaby’. Listen to the words. It’s a big, fat ‘FUCK YOU’ to something like Cystic Fibrosis, and so is surviving a double lung transplant. I remember Tameah and I at the Nickelback concert last year, where through a close friend’s friend, she got her wish to meet Nickelback. She apparently smiled for three weeks. Ended up in hospital the day after the concert, but smiled for three weeks anyway. That was the essence of Tameah.
When the piano was brought onto the stage, Tameah looked at me with a sense of urgency in her face and said, ‘Daniel … the piano … it has to be Lullaby!’, and when the piano began to trill, we embraced, smiled wildly and cried. She’d made it, and I’d made damn sure I’d delivered her to the front of the mosh pit which I’m so happy I did. If anyone knocked into her, out came the dagger eyes. If they kept knocking into her tiny frame after a few unfriendly stares, I had something to say.
Tameah was a photographer of spectacular talent and owned (and loved) many snakes, reptiles and other animals. I was never scared of snakes, but she made me love them. They’re beautiful, lean and friendly creatures that just want to slide through your fingers and cuddle you. This is Biscuit, Tameah’s lovely olive python giving me a hug at Prince Charles Hospital. You read right – Tameah would take her snakes into hospital with her. I’ve heard stories about them hanging from I.V poles and from squealing nurses. She always had a couple of bags of snakes with her.
And her photography … breathtaking, in a beautiful way …
And here is ‘Lullaby’ – Tameah’s song. The third day of October is here on in known as Tameah Woodford Day. Tomorrow, I’ll be going to the funeral home with Tameah’s Ben and her family where we will organise her funeral. I’m tired of negotiating death and coming out with such a raw deal, and watching others cross the same fire.