As the last gusts of winter cut through the trees, today marks twenty-one years since I took my first breaths with another persons lungs. I know – it’s a bit of a head fuck. Growing up, my chest X-rays would show the shadows of infection spreading like a stain across my chest. In retrospect, the change over my first eighteen years was gradual until I was direly ill and the images resembled more of a white out. These days, thanks to my incredible donor my chest X-rays are what my doctors and I like to call ‘unremarkable’. I love being unremarkable.
When people ask me what I remember most vividly about transplant, I usually think of the pain. The physical pain of dying, and then the pain of being cut in half and sewn back together like a rag doll.
I learned very early in life that you can’t argue or bargain with genetics – both brutal in their truth and delivery – and when I was in the full-throated agony of post-transplant, I bargained with every deity and argued with so many different versions of myself. Some days it was all too much. I would thrash around like a shot buck trying to find its feet as it bleeds out, then I’d stay deathly still so I wouldn’t have to move my aching body. And the whole of me ached. As I’ve written before, my return to life was a violent one.
I usually write something on the eve of my Transplanniversary, but when I got home last night, I was ready to flop into bed. This morning I woke around 5am, had an early brekkie, spoke to my parents and then went over for a cuppa. The last couple of weeks have been fucked tiring with the near death of one of our family dogs. If I’m honest, it’s been emotionally laborious – dogs make the best humans, after all.
Today I’m working on my memoir while keeping an eye on the sprinkler as I move it around the yard (I call it ‘strategic watering’). Everything is tinderbox dry and the incoming summer is set to be brutal. Tonight I’m off to see Fleetwood Mac with some friends where I’ll get to see my real life spirit animal Stevie Nicks. My first Fleetwood Mac experience was when I was 11. The music was so loud it hurt my chest so we were ushered into a special room which wrecked the concert for my parents and cousin (sorry!). The ushers said that up until then, it was the loudest concert on record with Mick Fleetwood’s bass drum barreling through my chest to behind my ribs and into my back. If only he would barrel into my bed life, the magnificent beast. I’m lucky to have seen him in all of his drumming glory four times.
Tonight’s special for another reason because I’m sharing it with one of my oldest and dearest friends. Sharon and I have known each other since we were thirteen and like so many of my friends she was there the night of my transplant. I adore the photo of her and Mum smiling at my pink fingers, mostly because she has always been a massive needle phobe. I thought she was so brave coming to see me with all of the needles and tubes blooming out of my body. All of these photographs (and photos of the surgery) were taken by my friend Alicia Alit-Trevatt. To say I’m grateful to have a record of both my impending death and my return to life is an understatement. During those dark nights of the soul when I feel like I haven’t done anything meaningful with my life I often look to these, and they serve to remind me how far I’ve come. I survived. And if that’s the only thing I’ve done and done well, then I’m ok with that.
I haven’t written poetry for a few years. Lots of notes, but no poetry. On 1 April, I found out that my dear friend Camille had only weeks to live after a diagnosis of incurable angiosarcoma in January. For some reason, I grabbed a pencil and notebook and started writing.
Cam had a double lung transplant for a rare immune disorder in February 2013. She messaged me that morning to let me know that lungs were available. We both cried out of joy and fear. I was just about to walk into a ten day silent meditation retreat, and didn’t know for a couple of days whether she had lived or died until my teacher told me she had survived.
Cam knew I was going on this retreat, and when she woke up from her surgery she scribbled the word ‘retreat’ on a piece of paper (I believe she was still intubated). Her family had no idea what it meant, but we eventually explained it to them. It was her first word and I will always feel very honoured by that.
On the 7 April, my friend Katherine and I went to Melbourne for Cam’s early 45th birthday party. People travelled from interstate and overseas and it was full of love and colour just like Cam who was a gifted sewer and crafter and lover of anything bright. What was truly special about her party was how she had brought so many people together through her CurlyPops blog and instagram feed (the girl loved her social media).
In her final weeks, she travelled to New Zealand and Uluru, made quilts for her nephews, raised money for cancer research, went to her nephew’s basketball final (they won), and spent Easter in Tasmania with her family. And that’s when things went a little pear shaped. Friends chartered a flight for Cam on Easter Sunday and she died on Tuesday afternoon. I usually write long posts about my beloveds who have died, but I don’t have the head space to keep writing. It’s fair to say I’m fucking devastated and many hearts are broken. And I’ll leave you with one of the last things Cam said to me – ‘please don’t forget me’. Oh, Cam – how could I ever?
And so, it is weeks now.
Not a year, not months; the anticipation of chemotherapy expired.
Just the work of grief, the clippings of loose ends,
tucking under seams and weaving them in
until the blanket is threadbare for when your nephews
have children of their own.
There is no fairness in this – we knew this from the outset.
And you with your red lipstick asking, ‘have I done enough?’
You did it all by waking up as I waited
in stillness under a blanket of cicadas —
my head thicker with memory than I bargained for,
waiting for rivers of thought to be stilled.
I’m supposed to be good at this —
the sick, the dying, the grief;
the scaffold of life being torn down.
But as I chew on an apple I feel vastly under qualified.
Vastly under qualified, yet heaving with it all,
splitting open like banksia pod.
And just now, a rainbow lorikeet lands in the Chinese Elm
and it is as though you are here but already gone.
The bird hangs from a branch, bark tight with lichen.
It rebalances, drops down to the bird bath and sips delicately;
it’s teal head glinting in the autumn sun.
I catch the wind on my tongue, see the hibiscus still blooming.
I memorise you, singing you home with a hymn to all things lost.
Over the last two weeks, I posted some thoughts and opinions on my Facebook page as to why I believe that chasing happiness can be like a sickness, and how the pressure to be ‘happy’ or ‘on’ all the time can do more harm than good. Here it is in full:
Hi lovelies, I read a quote earlier in the week and it’s been irking me. Like the thinking out loud girl I am, I feel compelled to write about it because what I’m about to share affects most of us at one point or another. So strap yourselves in, because this is a long post. This quote rubbed me the wrong way as soon as I read it. It had a nasty sting in its tail and summed up my very strong opinions about what I call ‘positivity‘ or ‘inspiration’ porn’. I’m not going to post the quote for copyright reasons, but the gist of it was this: ‘our pain is a gift and we can harness that pain into passion and other good stuff. Be grateful for your pain, as it has many lessons to teach us.’ Well. I. Call. Bullshit (hello bullshit? Are you there? It’s me, Carls … yes, I’m calling to report about how skewed the positivity and happiness movement is. Hello? Hello?! Ugh.)
Last year, I had a conversation with a like-minded gentleman about how the positivity movement oft times does more harm than good. We’re expected to suck up our situation and smile through it like an automaton, so here’s a question (one I’ve asked before) …
WHY THE FUCK WOULD I BE FEELING GRATEFUL WHEN I HAD A BROKEN VAGINA AND A POO BAG? Did having cancer give me any wisdom I could hammer into gold? Nup. It was one of the most horrific experiences of my life. See that photo of me? I’m not looking very grateful, am I? Well, shame on me for not gleaning anything out of the subsequent coma I’d soon be in and the three months I existed with an ileostomy that either leaked or exploded several times a day. At the very moment this photo was taken, I was terrified, miserable, and in pain. But mostly terrified.
Here’s the thing. So many people have fallen into the happiness trap where every experience – good, bad or indifferent – is a chance to learn something positive about ourselves that we can share for the greater good. Well, I’m here to tell you that that’s not true and you shouldn’t feel guilty into thinking otherwise. I tend to look at things through the lens of reality.
In this photo I’m not smiling because my reality at that time was a massive bowel obstruction, seizures, coming close to death (again) and some of the most horrific physical and psychological pain and suffering I’ve ever known.
If you’re going through shit, you have every right to be curmudgeonly, to wallow or to scream at the universe. We’re human and not every fucking thing is a lesson or a chance to be more ‘enlightened’. A hyper-positive attitude was never going to get me through transplant or cancer. It was more down to sheer will, the marvels of modern medicine, my transplant team, the love of my family and friends and the knowledge that I had no other choice except to go on.
I didn’t know who or what or how I was supposed to be after my transplant and it was a time of mass confusion with what felt like a thousand conflicting emotions that I felt so guilty for even having in my head, let alone holding onto. There’s so much more I could write (I’m writing a chapter on this at the moment), but I’ll leave it to you to feel how you want to feel. Don’t buy the hype. Fuck Deepak Chopra, Louise L. Hay, Tony Robbins and other charlatans who espouse this rubbish that in order to grow, we must suffer. In the spirit of Fleetwood Mac, my best advice is to go your own way. In the spirit of me, fuck that shit. Peace out.
The post received a fairly conclusive reaction apart from one single exchange of words with a person who doesn’t even read my blog. Coming from a place of fear and unresolved issues will do that. But further to what I posted last week, yesterday I found this old chestnut …
And as much as I love a stone cairn, I have no time, patience or tolerance for such a misguided sense of privilege. I prefer this gem …
And so I present, my 2018 Health Shit List …
1 bronchoscopy (which equals one general anaesthetic)
1 appointment with my gynaecological oncologist which lead to …
1 pre-admission clinic so I could have …
1 unilateral oophrectomy (removal of an ovary due to a giant cyst I was worried was cancer. It wasn’t)
2 bouts of bone pain as a side effect of antibiotics
Countless episodes (and days) of nausea where I’ve needed chemotherapy grade anti-emetics
1 major sinus infection and the six months of migraines and headaches every day preceding IV’s
1 chest infection
1 major depressive episode
Complex PTSD where the closest comparison my psychiatrist could come up with was me being a concentration camp survivor
1 CT scan chest = 1 episode of scanxiety
1 CT scan sinuses
6 chest X-rays
Dozens of appointments with my GP
4 lung function tests
5 courses of oral antibiotics (one of which made me suicidal)
2 attempted courses of nebulised antibiotics my throat couldn’t tolerate
50+ blood tests, including needles in my feet
2 internal jugular lines for IV antibiotics which necessitated two trips to ICU
100’s of finger pricks for diabetes
100’s of shots of insulin
5 serious hypos/low blood sugar levels where I was unable to walk, had trouble breathing and thought I might die on the kitchen floor. Naked. With the fridge open.
2 optometrist appointments
1 dental appointment (routine) as well as two cracked teeth and two fillings (wtf?)
1000’s of tablets, some cytotoxic and cancer causing
5 psychiatrist appointments
2 psychologist appointments
1 EMDR session
1 trial of a norepinephrine and dopamine reuptake inhibitor for depression, which has mercifully worked
1 trip to emergency
2 inpatient stays, albeit short
6 lung transplant clinic appointments
1 skin check because I have a 65% higher chance of developing skin cancer and melanoma from the combination of anti-rejection medication and how they interact with ultraviolet light. Because I’ve stayed out of the sun and worn sunscreen pretty much every day since I was 21, my skin check was perfect.
The possibility of a condition called mycobacterium abscesses which would involve a year – A YEAR – of IV antibiotics, as well as other oral antibiotics which can stuff my liver and kidneys. Thankfully, my doctors are 99% sure I don’t have it, but since it takes six weeks to culture I still have two weeks where I could get a phone call to say I have it. The waiting alone is a complete and utter mind fuck
Terminal thrush. There, I said it.
I’m yet to have my Pap smear, colonoscopy or my mammogram
Here is a sketch I did at the beginning of the year to show what my body has been through. After I drew this, I walked back to it a couple of days later and thought, ‘holy shit, I’ve been through a bit of trauma.’
I’m not one for comparing my experience to others, but a friend sent me her shit list today and it made me feel like I’d come away relatively unscathed from my own annus horribilus. And really, I’ve come off lightly after speaking with other transplant friends who have had cancer, are on dialysis, whose lungs are failing and the rest. Everything is always uncertain, and while this might sound hyperbolic, lung transplant recipients live on a razors edge. I say ‘lung transplant recipients’ because lungs are the most challenging organ to transplant and keep healthy.
Before transplant there was a sense of safety – an absence of fear, if you will. I was always ‘fine’ because I knew what to expect. Infected port-a-cath and resultant septicaemia? Fine. Spending my birthday in hospital? Fine. Having a port-a-cath surgically inserted upside down by mistake? Fine. Coughing up blood before singing in front of several hundred people? Fine. Having my lady bits rearranged and an ileostomy? Not fine.
Having a transplant is the ultimate gamble, but I’m not a gambling woman. But I didn’t want to die so I went on the list. I didn’t want to die so I clawed my way back to life and said yes the night I was offered donor lungs. I didn’t feel elated. I didn’t feel excited. I felt sick. I felt sick because I thought I was going to die that night, and for so many nights after that, and there was a family experiencing the worst moment of their lives.
I find myself oscillating between gratitude and guilt, and feel a palpable sense of that when I have a moment, a day, a week or a month when I hear myself say exactly the same words I said in the days and weeks after transplant – ‘I wish I’d never had the surgery.’
Afterwards, I didn’t know who or what or how to be. It wasn’t as though I wanted to die – I just didn’t know how to live. Twenty years on and I am still learning. Adapt or perish.
I realise that these lines of thought will make some people uncomfortable and even combative, but until you’ve walked the line with me with one foot planted in life and the other planted in death, it’s best if you keep your opinions to yourself. I’ve survived the unsurvivable, and not just once. I’ve learned more than my fair share of lessons, so here are a few I’d like to share:
– Sometimes when you reach for a life jacket, you’ll find it’s made of barbed wire.
– Time is a healer and a thief in equal measure.
– Grief and life are one and the same – one minute you’re gasping for air, the next your rolling through peals of laughter and joy.
– There is no point railing against genetics, as brutal as their truth may be.
– I am the custodian of two lives – mine and my donors.
– I fear decline more than death.
– I feel as though I need to atone every day even though I wasn’t responsible for my donors death.
– When it comes to guilt, you can treat the symptoms but not the cause.
– My body has been a sterile field more times than I can remember.
– Everything in my life at one stage or another has been pathologised – emotionally, physically, psychologically.
I’ve also learned that despite these harsh truths, I’ve had a wonderfully rich life. I might have lead a double life, but I was a happy kid who was just happy to be here. I was lucky enough to have two incredibly dedicated parents who did everything in their power to keep me well. I travelled overseas. I had an excellent education and my friends have never faltered even when they could have. I’ve had some marvellous opportunities come my way, and people who were once strangers are now friends. I was lucky to be a mistress of adaptation from an early age, so I’ve worked out what works best for me when I’m either happily paddling along or if I have to adapt yet again:
– Hibernate to rejuvenate
– Long periods of silence, reflection and limited contact with the outside world (aside from my immediate family and friends – okay, sometimes them too, but they understand)
– Music and singing (badly)
– Watering my garden, watching the transformation of my little ecosystem of trees, seeing my veggies growing and talking to my plants.
– Being surrounded by books and reading voluminously.
– Being in nature, preferably the forest where I can touch and hug trees, but the ocean works too. It’s nice to wash the day/week/month/year off.
– Being rude and vulgar with friends who get me.
– Observing and forgetting all concepts of time.
– Essential oils (I can feel the eye rolls)
– The full lunar cycle (more eye rolls)
– Simplify, simplify, simplify, because all I want is to live a simple life with as little ‘stuff’ as possible (except for a mass surplus of books)
– Help others when I can, which also means ‘shut the fuck up and listen’.
– Ritual and ceremony, like the spell I recently cast on the last full moon.
– Beautiful conversations with friends and strangers. You should say ‘hi’ to a stranger because they often have a story to tell you and you’ll learn something new.
– Deep, deep breaths every morning
– Yoga 🧘♀️
– A good cuppa and outstanding coffee
– A bloody good laugh (honestly, I’d be dead without gallows humour)
And so …
There is much to celebrate, and while I balk at the afore mentioned inspiration porn, there’s a march of pride in my chest knowing I’ve nearly made it through one of the most unyielding years of my life. I’m not going to say ‘next year will be different’ because it may not be, although I’m feeling a little more buoyed by a couple of prospects.
Finally, as I learn to love and let go of my past – as fetid as it may be in my mind – if I keep invalidating my experiences and softening the truth, then really – who am I?
I call Cystic Fibrosis a series of small brutalities. But small brutalities multiply and before long you’re deep within Traumaland. On Monday, my Mum and I returned to the Royal Children’s Hospital for a site visit after it was demolished last year and it made me feel like I’d lost my tribe all over again
I said a tentative goodbye last year when I saw the buildings being torn apart; being eaten by strange looking machines, their steel teeth enjoying the feast. I hadn’t been into the bowels of the Royal for twenty-four years, and the bones of my childhood resembled a modern ruin. It was the place where I fell in love for the first time. So many firsts and lasts. I cried. A lot. I ugly cried in front of confused workmen who so kindly asked if I was okay.
But Monday was something entirely different. There was very little sadness. Instead, the encounter was strange and tender, with stories shared (mostly of sacrilege and mischief), hugs with the two lovely women who organised our visit and a chaplain I know from the P.A Hospital.
That afternoon I posted a video to my Instaspam and Facebook page, but you can’t write a small blurb about a big story so I thought I’d best give it some context.
I grew up in two places; my familial home and the Royal Childrens Hospital. My earliest memory is of looking through the bars of a prison; I now know that I was gripping onto the bars of my cot, either crying for my mother or a nurse, or simply because I was crotchety and didn’t like being contained.
If you want the definition of a double life, then read on.
Living with CF was akin to being a spy. I would live my ‘normal’ life at home, have my ‘normal’ friends at school, and do ‘normal’ stuff. Then I would go into hospital for a few weeks at a time where I had my hospital life complete with hospital school and my CF friends.
I would turn it on and off at ‘normal’ school, when I was with my friends, in social situations, and especially when I was at school. If a friend died, I simply went to school the next day as though nothing had happened as I tried to focus on my school work. But study was my escape. Throughout primary and secondary I basically had to keep my shit together – more for other people than myself. And so there was home and there was hospital. But like any good spy, I could seamlessly go from hospital to ‘normal’ with barely giving it a second thought. It also helped that my illness was invisible.
Although I’d be physically better, I’d often start back at school spent and raw. Any admission had the probability to cut you to the quick, especially when a friend had died and often in horrific circumstances. In hospital I had my tribe. And it was tribal. I’m not using cultural appropriation here; we had elders, there was a hierarchy, we pooled resources; there were short lived disputes, and we were unusually close.
I doubt my school friends would have known the full gravity of my situation, but I didn’t really want them to. Ever the actress, I was always ‘fine’. I’d rocket through the school gate with my big voice, drop my bag and I’d be back to ‘normal’. It never failed to please me when I returned to school, because I could get lost in the minutiae of being a teenager – music, boys, exams, who was doing what and who was doing who. I was just like every other school girl, and that’s how I wanted it to be. That’s how I needed it to be. Adaptation was the one skill I had mastered by the time I was six years old.
And so, through all phases of my life until I turned eighteen I was tethered to this place, and as I stood with Mum I felt a gentle cadence move through me like a mood. The place was silent because of a public holiday, so there were no people, no noise, and no dust. That morning I was trying to think of something I could take with me to the site, so I shoved a piece of tumbled rose quartz into my pocket and after a little prayer of thanks I threw it into the pit. Half of my heart will always be there, so that was fitting.
If there’s a feeling that describes our visit on Monday, it would be peace and the sense of an ending*. Not closure, because closure doesn’t exist in the tumult of grief.
I had a friend tell me this week that I am ‘terrible at dying’, and he’s right; tell me the odds and I’ll fuck them up. I’m happy with being an under achiever in that regard and an outlier in others. Rest easy, RCH. And for the thousands of souls who died on that site, I will remember you.
*Julian Barnes has written a brilliant book with this very title.
This time twenty years ago, I was dying in hospital. Not to be hyperbolic, but I really was. That’s why it was so strange when I had to go into hospital last week to start IV antibiotics for a sinus infection. Sinus – it sounds so innocuous, doesn’t it? Except that it’s become one of my biggest ongoing health issues. I’ve had four big sinus surgeries where surgeons have apparently scraped the base of my skull (their words, not mine), but I still end up with a head full of polyps and infection because that’s just the way my CF rolls.
After brawling with a sinus infection for months, I deteriorated last Wednesday, so on Thursday I found myself in emergency with my mum. After four ultrasound guided attempts to get blood, a vein was found in my foot and later that afternoon I was taken to ICU to have a CV line placed in my jugular.
I have impossible peripheral IV access, so a CV line is the only way in. When I arrived upstairs to have my line placed, I was greeted by smiling faces, but I knew I’d have to answer some questions because I always have to.
‘Why do you need a central line?’
‘Fuck,’ I thought, ‘here we go’. I explained that I was impossible to access.
‘I’m sure we could get something in.’
Um, no. Not even when the best anaesthetists struggle.
‘What about a PICC line? A central line seems like a bit much.’
It was when I had a small crowd of people disputing what I’ve known to be true my entire life, and with the CV line on the trolley ready to go, when just short of losing my shit I said ‘with all due respect, I know you’re the best, but I have no access. I can’t have a PICC in my left arm because there’s a massive clot there from a port-a-cath which was my seventh, and on my right arm there’s nothing. Trust me, if I could have a PICC line in my arm rather than a line going into my jugular, I would’. Now that’s for a couple of reasons. Despite my CV line being sewn into my skin with stitches to anchor it, if I did happen to rip it out I’d rapidly exsanguinate aka bleed to death because it’s in my jugular. There’s also the ever present danger of infection which can lead to blood poisoning and septic shock, and you know what? Been there, done that.
And so I was polite, but firm and the procedure began. I was taken to the ward and I politely asked to be told my brilliant consultant I was leaving on Saturday because being in a hospital room isn’t an entirely painless experience for me. After spending so much time ‘incarcerated’, after my transplant and when I was eventually well again, I had this seemingly limitless freedom. I wasn’t on a hospital schedule. I could sleep uninterrupted, I could stay out all night dancing, and go out any time I wanted. I could take long baths and spend time in nature. So when that freedom is taken away and there’s no other choice except to be an inpatient, it feels like the walls are closing in and I have to get out of there as fast as I can.
It’s always an exercise in humility when I hark back to what I was doing twenty years ago. It calls to mind how and when my body began to wind down. I was lily white – fluorescent even – and my muscles had turned to mush, my bones like chalk.
By this stage, I would have stopped reading because I wouldn’t have had the energy for it – I couldn’t even concentrate on a newspaper let alone Seamus Heaney’s ‘The Redress of Poetry’. My oxygen levels would have been perilously low, I was a shade of cyanotic blue, and while I wasn’t on any pain relief yet, I really should have been. One wasn’t palliated for CF back in the 1990s, and the pain was exquisite in a way you never forget.
My partner would have still been taking me on outings, but I’d be tethered to an oxygen tank and needed help walking because a wheelchair was the final insult. Billy and I grew so close in what should have been the final six weeks of my life (also exquisite).
So twenty years ago, I was dying. And I was okay with that. Really, I was. I’d had twenty-one years of being in the world where I was fierce, loud, brazen and totally shameless. I was addicted to life. Nothing was nuanced with me, because it never had been. Every moment was fully weighted, yet coloured with urgency. I was indifferent to what people thought of me because I had lived my mad, raucous life – all twenty-one years of it. But then one night in late August came a phone call, and I would be ripped from my dying and thrown back into life with such violence. That changes a person in ways I can’t put into words. But I’m still here, and life is beautiful.
Last week, I joined the Queensland Writers Centre #8WordStory challenge on Twitter, and out of thousands of entries, the audaciously talented Nick Earls chose one of mine to feature on a digital billboard from earlier this morning until late tonight.
It’s a bit of a thrill being chosen, because there have been so many prolific writers who’s stories have been featured. It’s the closest I’ll be to ever having my name in lights, so thank you QWC and Nick!
My Twitter handle is @thedeathmidwife, and the billboard is on Bowen Bridge Road at Herston in Brisbane.
Always expect the unexpected. Be prepared like a girl scout without the rules (but with teh cookies). That’s always been one of my life’s mottos. After taking my last ever dose of opiate antagonist therapy last Friday, I was relieved when I only had some minor restless limbs when I turned in for bed that evening. I had been on the lowest dose possible, so I couldn’t have predicted what was going to happen next. On Saturday night, I drove up the coast for a prawn fest and I lay awake all night. I only had a couple of ‘punches’, in that my arms went a little haywire and my legs were sore, but it was nothing I couldn’t handle.
I’ve always adhered to the adage that our hell is here on earth, and on Sunday night, that was very much the case. My legs were kicking uncontrollably, my…