Tag: friendship

The birth of my fourth decade

I’ve been thinking about my thirties. About how they started, and how they’re about to end. Ten years ago at my thirtieth birthday party, I was bloated from massive doses of steroids I’d had to have earlier in the year due to a serious respiratory virus. I was puffy faced and swollen, and going into my third decade, I was fat (for me, anyway. Or at least my face looked like a puffer fish).

For what it’s worth, I haven’t exactly loved my thirties. They started off on a bad note when I had to be treated for the early stages of vulvar cancer. My oncology team and I tried  to keep the cancer at bay with a topical chemotherapy, which would leave my vagina looking like I’d sat on a cheese grater and ridden it like a champ. I know – so glam.

In November 2007, I underwent surgery so the cancer didn’t travel into my lymph nodes and metastasise, which would have afforded me protracted suffering and death, and while the surgery saved my life, it left me teetering on the brink of death. I had a poo bag and a broken vagina pieced together with skin grafts, and I honestly don’t know how I got through three months of non-stop shit explosions and blistered skin from a stoma that refused to stick, but I did (thanks for all the late night laundry, Mum).

When I was 31, I got myself into a destructive relationship, and my boundaries with men were still pretty woeful when in my mid-thirties, a person I was seeing got into a fight and called me for help. I cleaned and dressed his wounds, after which he pissed in my bed. The next morning, he helped me move the mattress out onto my balcony, but left before I had to bring it in myself. I was on home IV’s at the time, and nearly popped my CV line out of my jugular.

My response was an almost ethereal calm, simply because not much fazes me. I thought, ‘hey, that’s ok – mattresses can be replaced.’ WHAT THE FUCKING FUCK, CARLY?! My response now would be entirely different, and for all intents and purposes, he should have bought me a new mattress (he didn’t). Now, I’d kick him to the kerb without a second thought, block his number, and never connect with him again. It was only then that a close friend began to teach me about boundaries, self-worth and self-respect. This friend has also helped me plug in to my intuition – something I’d struggled to get in tune with before. There was other stuff. My sister’s divorce and its ongoing aftermath has been confounding in its cruelty and acrimony.

All in all, I’ve learned my most powerful and empowering lessons in my third decade. Yes, my thirties saw its share of death, but through this came unexpected gifts. I discovered my true purpose and passion with wanting to care and advocate for the dying. I went to my first Spiritual Care Australia conference which opened up the world of hospital chaplaincy (I call it spiritual care), and in 2015, I graduated from my first unit of Clinical Pastoral Education. My CPE training was one of the most rewarding learning experiences of my life, and I’m now working at the city’s biggest trauma centre as their only non-religious spiritual carer – such a privilege and so incredibly humbling (if you ever want a lesson in humility, go and sit with people at the bedside, and listen). In 2016, I was asked to be on the organising committee for the 2017 Spiritual Care Australia conference, and I’ve been made to feel welcome by all faith groups.

In 2014, I was invited to speak at TEDx Brisbane where I  shared my story and my hopes for how we can do death differently and how we must do death differently. After seventeen years, I discovered who my donor is/was after realising that I needed to know about her, even though I’ve had information about her since just after my transplant.

I have been lucky enough to work and learn with the best people in the death care industry, I did my first Vipassana, let go of my survivors guilt, and got clean. I’ve been clean for three years, and honestly can’t think of anything worse than taking opiates again. In fact, you’d have to render me unconscious to get any narcotic into my system.

On Christmas Eve, I was accepted into the Karuna Hospice Palliative Care Support Volunteer training program – an intensive I’ve been dreaming of doing for many years. It’s as though the world is opening up for me, and for that I sit in a space of deep gratitude. Transplanniversaries came and went, but never without much introspection and indebtedness.

I discovered what I needed to keep and what I needed to let go. I realised that just because I have a history with a person, that it doesn’t mean I have a present or a future with them. I know what ingredients help make me my best self, and I’m clear in my purpose. I’m settled, happy, and in love with giving zero fucks about what anyone may or may not think of me.

So why is that? It’s because I’m done with not being and living as my authentic, no-bullshit self. I was done with that a time ago, but as 2016 and this decade comes to a close, having lived with so much uncertainty, I am certain of one thing – life is beautiful, and all that matters in the end is the love you share and the love you get.

My wish for you, going into 2017, is that you embrace the simple things, because these too have been my greatest lessons. Go and hug trees, howl at the moon naked, walk in the rain (naked again), take less and give more, love yourself, treat others with kindness and suspend your judgment. Own your shit, be accountable, tread lightly upon the earth, and as my dear friend Andy who died last month waiting for a transplant would say, ‘don’t be a cunt’. Life is short – paint it your shade of spectacular.

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The places I go …

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It is akin to a dream, this dense clump of trees unfolding before me, reaching sharply into the sky. As I walk through the forest under canopies of palms and eucalypts and a discord of screaming birds, my feet arrive at a bog. I’m at the lip of a lake I cannot reach for the rain that has distended the ground. Perhaps Jacky can take me tomorrow so I can see where it splits from the earth and drops away.

There is life above, around and below me. The swollen ground silently objects under my boots and as I lift my feet, it plumps up like a pudding.

The air is slow and dense from woodsmoke, and it anchors me to the moment. I crush leaves between my fingers; that stain of scent not leaving the folds of my hands until I bathe later that evening.

With the sun caught in the canopies – splintering shadows onto the ground as though they are dancing a jive – the screech of a cockatoo and flurries of parrots embroider the Piccabeen palms. Their silver mottled skins are grooved with what looks like inverted feathers, as though someone has taken the time to stencil each one.

Early evening yields to the call of the kookaburra, cackling at our stupidity and the irksome way we do not love them every minute of every day.

Diamonds scuttle across the water as the day reaches into dusk. The milky way splashes across in silver and white – a smattering of light and relief in their spilt majesty. The sky cradles a waning moon.

Being here, it takes time to breathe at a slower pace; to let my belly soften and sink into my winter bones. I find myself in a world where it is becoming more difficult to disconnect from the goings on of humanity, my country, my community. There is a deep well within me of wanting to be free from the destruction, the war, and the suffering I have no control over. But then I realise for the millionth time that I control nothing. I can but try to go forwards in what seems to be the right direction. I can shepherd and steer myself, yet control does not belong to me. It never has.

I am finding myself enjoying growing older. Not only because I never expected to, but with the growth itself. I am assured as a human being, though never would I believe that I am particularly ‘good’ at any one thing, although I am on my way to becoming an exceedingly keen listener, and that itself is an art. 

Another art (and something I am not particularly good at) is writing. It is a pursuit I will never be great or even exceedingly good at. If I ever become half the writer I have yearned to be all my life, would that be a paragon of happiness? How am I ever to know if I am anything over than average unless someone tells me differently? And even then, can I bring myself to believe them? In all likelihood – not a chance.

With age comes wisdom and truth. Some are fraught with despair, while others have a far more convivial pulse. I remain unconvinced that absolute truths do not exist, although these things often come down to perception.

Breaking my bonds with the city, I ‘go within’ as Jacky calls it, and reach back into the folds of myself I have forgotten or allowed to lapse. I come back to breath, firing my body in the sun. My lungs expand; each lobe bristling with each seemingly bottomless breath. I readjust the way a spinnaker does downwind. Silence is my ballast.

As I come to see my senses as a decoy, I’m carried towards a deeper understanding of who I am, where I am in the world and how I came to be here. I temper my body, but do not become weary, and there is a far greater element of not needing answers – to embrace the mystery and come home. Should books and music, baths and tea, shadows on the wall from the moon, and the odd storm be all I had for company, I would want for nothing. For there is equanimity in the quiet, and peace in patience.

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Where in the world are you, Carmen Sandiego?

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.

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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.

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Cooking: Chicken soup and green smoothies.

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Drinking: Tea. Endless cups of tea. And kefir. I cannot get enough kefir with a generous dash of honey and cinnamon.

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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.

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Pissed: That I caught the flu and it’s still affecting me a month later … Get the fucking fluvax, people.

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Enjoying: My growing collection of minerals. Or crystals, if you want to call them that.

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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.

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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.

Admiring: Anyone who lives with a poo bag.

Believing: In karma. Because I have to.

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.

Trying: To spend more time offline and in nature.

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(image from https://nostalgichobo.wordpress.com)

Thanks to Pip at Meet Me at Mikes for such a cool list 🙂

*Sadly Andy died a few months after I wrote this. He will be eternally missed.

I’m going to India!

So how’s 2016 treating you so far? I’m deliriously happy to report that mine has begun like no other. Strange things are happening to my body and I’m rising earlier than ever (think 4-5.30am). I’m off the valium I was taking for my restless legs, and I think what has happened is that my body clock has done a complete one-eighty since I’ve been off the suboxone.

Being awake and present in the morning is such a gift, and while it’s something I’m still getting used to, it’s something I want to get used to. Dawn and dusk are the best parts of the day, and I’m getting so much done. I’m also suitably tired enough to collapse into bed only to go straight to sleep early in the evening.

I was to go to yoga with my friend Natty D. this morning, but alas, I could not find my yoga pants, so I’m in the process of turning my wardrobe inside out and donating a whole lot of clothes to charity. For me right now, less is more – unless it’s tea.

Speaking of tea, I caught up with my beautiful Bec yesterday (I have two beautiful Bec’s in my life – talk about being blessed), where we shared too much good food and did a gift swap. We’re both Capricorns, so if you’re into astrology, that needs no explanation. She’s part of my tribe – a ‘soul sista’, if you will. We giggle a lot and have debaucherous conversations. She has been one of my biggest and brightest supporters and I love her HARD for her open heart and willingness to cry with joy.

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She’s also obsessed about India, is a full time sari wearer, and with her husband Alex, has just spent close to a month in their beloved India. I was thoroughly spoilt at lunch with a bag of Chai Marsala from the world famous Abraham’s Spice Garden in Periyar. I’ve been having rabid fantasies about this chai mix ever since Alex made me a brew last year. Along with some black jasmine oil (which apparently smells different on everyone, so it should be interesting to see how it smells on my salty skin) and some loose green tea from Mumbai that came in a beautifully carved wooden box with brass elephants, I was feeling a tad emotional.

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I have a few sacred places that I visit – the farm, Barcy, Carmel-By-The-Sea and Byron Bay (even since it’s been heinously gentrified), but India is a land I’ve wanted to visit ever since I can remember.

Have you ever had a place you’ve never been to pull on your soul? Like really pull on your soul? Well, for me, that’s India.

I can hear the call of the Ganges plunging into the Bay of Bengal, the spice plantations, the temples and its people. I have some stunning books on India I reflect on often, and a couple of years ago I wrote ‘India. I weep because it is there and I am not. And I weep because I may never get there.’

So what’s holding me back? I’ve never had any luck with travel insurance, and getting sick in a developing country with transplanted lungs would not be ideal.

But what is life if you don’t get to experience it? What is life without a little risk?

Until I get to India, I will always be a falling leaf looking for a place to land. And so I am going. I have two years to save, plan and research with my doctors, read and observe and get my body into optimum condition. I’m going to be with Bec and Alex who know the country, have researched hospitals for me (bless) and know where to eat, stay and how to carve out an authentic Indian experience.

We will celebrate Bec’s 50th birthday in Udaipur, and I’m planning on staying for a few weeks. Why go halfway across the world to what I believe is one of my spiritual homes or places of spiritual refuge, when this might be the only chance I get? So it’s off to the Ganges to gently dip my toes into its waters, spend a day watching the funeral pyres, meet some sadhus (holy men), meditate in an ashram for a few days, catch a train to Varanasi, shit myself as is per the authentic Indian experience and go on a two week tour.

I’m well aware that travellers often have a romanticised view of the places they visit, but I know that India isn’t all palaces, ashrams and markets. India is a country of immense poverty and suffering, so my ultimate India experience would be to volunteer at a hospice. I figure it’s the least I can do as a human being.

But back to the farm. Every year, Ben and I give Ganesha a de-web and a rubdown with dubbin. As we worked on Ganesha with lots of love (and dirty jokes), I felt connected and uplifted by this act of ritual and worship. I rubbed his belly with reverence and love, and massaged his hands like I would a fragile human.

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OH, THE REVERENCE …

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Shiny, happy Ganesha!!

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On the third day of the New Year, I drove from the farm up to my folks place at Mooloolaba where I was greeted by this vision.

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I spent a beautiful afternoon wandering around and sucking back veggie juice, then I walked down to the beach to bless my 2016 gratitude stone that I’ve added to my medicine bag. Then I meditated. You get some odd looks when you close your eyes and stay perfectly still for extended periods of time. I just smile at people and get a smile in return – what a gift that is in itself. Spending time alone doesn’t mean I’m lonely. I spent so much time alone as a child in hospital that I’m an ace at it, yet so many see being alone as wasted time. Redundant time.

Why not surround yourself with people?

I like to pose another question – why not surround yourself with YOU? Why not be comfortable in your own presence and hold the space for your body, mind and spirit. For me, the rewards of being alone are constant and ever changing. It restores me back to calm and peace and a surrendering of sorts to the universe and it gives me spiritual sustenance in a Waldenesque kind of way.

The true waste is this – waiting for someone else to fill your cup. Don’t wait. Fill your own cup with your dreams, memories, plans, loves and adventures. No one truly knows what you know about yourself except you, and that is something really special. More special than you may ever realise.

When I’m alone right now, this is the place I’m dreaming of and making plans for – the Bhaktivedanta Hospice in Vrindavan. To say it inspires me is an understatement of gargantuan proportions. Here’s what it’s all about. Also, here’s to conscious dreaming …

The night I lived again: part three

There is beauty in the ordinary. Waking up, making coffee, washing my hair, going to the post office. All ordinary things made extra-ordinary because I am here to do them. I woke early to watch the moon sink and the sun rise. The east screamed tangerine and the sun pierced the thin veil of sky with a restless yearning – as if it needed to be seen by humans so it had proof of life. ‘I am here!’ it bellowed through the clouds.

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Not surprisingly, I was much the same when I woke up after my transplant. I was still intubated (on life support), and my first physical response was to try and pull out the hose tube that was down my throat. I remember Dad finding me a notebook and giving me a pen so that I could write, but all I could manage was scrawl and for a few seconds, I thought I was brain-damaged. But was I even alive? I could see Mum, Dad, my sister Nikki, my boyfriend Lachie and one of my best friends, Laura. Someone then found Dad an alphabet board, so I could point to the letters. The first letters I pointed at were –

‘A M  I  A L I V E’

Everyone laughed and nodded their heads, saying ‘yes, you’re here – you’ve made it.’ Then I pointed out the letters ‘I  L O V E  Y O U’ and I couldn’t tell if everyone was laughing or crying or both. All I wanted to know was if I was alive, so when I knew for certain, I started thrashing around on the bed because the tube down my throat was choking me. At least that was how it felt.

For the next three days, whenever the sedation wore off, I would thump around like a frightened yearling and try to pull the tube out. That was until a nurse rushed at me and pushed more sedation through the I.V in my neck. What surprised the doctors, was that I needed about five times more sedation than the average patient of my age and size. They worked out it was a combination of stubborn and a high tolerance for not only sedatives, but barbiturates, general anaesthesia. Here’s Mum watching over me. It saddens me to see the distress etched along her cheekbones and forehead. I often wonder how much this experience both eroded and strengthened her.

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My friend Sharon, who introduced me to Alicia (they were studying the same course at the Queensland College of Art), and my Mum are smiling here because they can see that my fingers are pink after having been cyanotic (blue) from the lack of oxygen in my blood for so long. The fact that Sharon would cry and faint at the sight of a needle and/or blood (I remember her screaming when we had to have our TB immunisation at school), she did incredibly well with all of the needles, tubes and machines. Sharon has since had three babies and can now deal with blood. I’m very proud of her evolution.

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This is what an end stage Cystic Fibrosis lung looks like. I always liken it to a dead bat.

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When I initially went on the transplant list, I was told that I would more than likely have a long wait because my lungs were so small, which meant that I might need the lungs of a child. This never sat well with me. It was like a stone in my belly. Knowing that I was essentially waiting for someone to die so that I may live was an already heavy burden, let alone knowing I may end up with the lungs of a child inside me who had not lived a long enough life, often made me feel physically ill.

Transplant can be is a mental and moral minefield. A girl I had grown up with could never reconcile the fact that she had another persons lungs inside of her, and she died a couple of years after her transplant full of that terror. During a transplant assessment to determine if you’re medically viable for transplant, among the barrage of tests is a psychiatric evaluation in order to ascertain if you’re stable enough to endure the possible mental rigours that go hand in hand with having such life-altering surgery. The transplant team has to know if you’re going to be compliant. Are you going to take your medication every day and at the right time? Are you going to look after yourself when you leave hospital? Do you have adequate familial and emotional support to cope post-surgery? If the patient has emphysema, will they start smoking again? Unfortunately the answer to the last question can be ‘yes’. I’ve known patients who have taken up smoking post-transplant, and I can only imagine how this makes the doctors and other medical professionals feel. Personally, I want to give them a high-five. In the face. With a SHOVEL. I want to repossess their lungs and give them to someone who deserves and respects them.

For me, having a transplant is a shared responsibility between my donor and I. It’s a shared duty of care. They’re not my lungs – they’re ours. I’ll say ‘my lungs’, but what I really mean is ‘mine and hers’.

And so, I was extubated (taken off life support and breathing on my own) after three days and I didn’t stop talking. For days.

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Mum, Dad, Laura, Lachie and Nikki were never far away.

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And neither was Sharon, my Blood/Sharps Princess Warrior 🙂

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Lachie would often leave me writhing in pain because he made me laugh so much. He was incredible.

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My first walk. I call this ‘The walk of life’.

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One of my favourite ICU nurses, Allan. He did a superb job of extubating me and he thought my post-transplant boobs were magnificent, so I love him extra hard for that.

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But like any journey worth writing about, it wasn’t all sunshine and rainbows. In the second week, I began to wheeze and it became steadily worse over a weekend. I was home on day pass and I bounded up the stairs where I did a Rocky victory jig (except that no one was watching). I let everyone know that I’d made it to the top of the stairs without dying, and I noticed I was wheezing.

‘I must have got an asthmatics lungs,’ I said, and everyone applauded my efforts and laughed at what I had said about my wheezy lungs.

Scott Bell, my lung transplant consultant, was sick that weekend, so another doctor – a heart transplant consultant (hearts –> chalk/lungs –> cheese) assumed that it was asthma and so prescribed me nebulised ventolin. The problem was that it wasn’t asthma and by Monday morning, I was critically ill with the worst rejection Scott had seen up until that point. I had essentially been misdiagnosed. Scott was not happy. You don’t get Scott unhappy.

I had bronchoscopy after bronchoscopy, was moved back into acute ICU for a day for observation and my morphine dose was increased about ten fold. Rejection was the worst pain I had been in since the epidural had been removed a week earlier. When the epidural was pulled, it was as though someone had poured fuel over my chest and set it alight. I’d never suffered – really suffered – with pain so fierce and searing before, and I’ve been unfortunate enough to have experienced it a couple of times since (once was after my cancer surgery in 2007). In my ‘Transplant Diary’, where Mum and Nikki wrote everything down every single day, Mum writes on the 31st August, ‘Carly is in extreme pain, like someone is sitting on her chest. She is having morphine.’

The other drug they increased was my prednisone (cortico-steroids). Massive doses of methyl-prednisolone pulsed through my body for three solid days, as well as other drugs you’d think would be better at stripping paint off the walls. My doctors were calling transplant units all over the world to try and save my life, and though we knew the rejection I had was serious, it wasn’t until six months later that Scott told me how close I came to dying. Even when I see Scott now around the hospital, he still shakes his head and says, ‘I’ll never forget that rejection. It really was an extraordinary time.’

There’s that word again. Extraordinary.

But I’m more than happy with ordinary. Ordinary means simple, and simple is beautiful in its truth and brevity. As I head out with my family today, I will look back to this ordinary day in all of its staggering and miraculous beauty and all of the blessings that come with that.

The night I lived again: part two

By the time it was definite that the donor lungs were a match, there would have been at least thirty-five people at the hospital – all friends and family. Even a friend’s boyfriend (now husband) had driven down from uni at Gatton, so he could be there for both me, his now wife and my other friends (love you, Davey!)

My boyfriend at the time, bless, had arrived at the Prince Charles drunk. With flowers and chocolates which I couldn’t eat. I think they became someone’s breakfast. He had been having a night in with the boys at his place, and they all very quickly sobered up when I arrived by ambulance. In fact, most people had beaten ME to the hospital. My Dad ran about three red lights and my best friend ran at least one.

I was taken up to the respiratory ward and we waited in the day room for a couple of hours before I was put in the wards only private room. The only problem was, with the amount of people I had with me, there was a fair bit of noise and it was now around 1.30am. We kept on getting in trouble from one particular nurse who reminded me of Maggie Kirkpatrick’s character on ‘Prisoner’. Or Nurse Ratched. She could get as angry as she wanted, because I soon discovered that she was going on six weeks of leave when she left handover that morning.

Carly: 1

Nurse Ratched: 0

You do silly things when you’re about to die like putting vomit bowls on your head.

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I got to say my goodbyes to each of my friends, one by one, and it was excruciating, both physically and emotionally. My friends held me so close – I remember my friend Tammy especially – and the pain was almost unbearable, but I wanted to do it. Parents of friends who lived in Melbourne brought up prayers and messages for me, and while I was grateful, I was too sick to give any sort of response, except for ‘thank you’.

I was told to ‘have a sleep’, but I wanted to spend as much time with my family, my partner and my friends as possible. And so, around 8am on the 22nd August, I was taken to theatre. The distress is so palpable on my sisters face, you can almost touch it.

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If there is a photograph to capture my most life defining moment, this has to be it – saying goodbye to my sister. So many goodbyes that morning.

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I hugged my parents and my sister, kissed Lachie goodbye and was wheeled away.

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All night and all morning I had been at peace. I wasn’t particularly worried and at one point, I’d had to tell everyone else to calm down. But when the orderlies began moving my bed in the opposite direction of my family and friends, I lost it. Up until then, I hadn’t been too worried – a possible combination of morphine and the desperate yearning to have my old lungs taken out of my decaying body. I wanted the next moment more than the last, and while my body couldn’t fight for it, my mind could. But then my brain broke. Split open like over ripe fruit.

I don’t know where the sound came from, but as I was being spirited away, I looked at the people gathered behind me and I wailed. My body was wracked with sobs because I had finally realised that I may never see any of these people again. I could die on the table (that’s another story) or I could make it through the surgery, get out of theatre and into recovery, only to die.

My friends subsisted on chocolate, cigarettes and a carload of Maccas when I was sleeping. Cigarettes. The irony has never been lost on me. Inside the O.R was (as all O.R’s are), subarctic. I was covered in foil to maintain body temperature and given warm blankets as I lay there waiting to go to sleep. I had beautiful conversations with doctors and the nurses and they were able to get me into a state of repose where I even asked the surgeon if I could have a couple of 500ml bags of saline popped into my chest

The Propofol leaked through an intravenous line in my chest, and I happily surrendered to the milky white liquid like a little death. My last words? ‘Save me, for I am the Sex Goddess.’ ‘Sex goddess’ had followed me through high school as a nickname, except I didn’t have sex until after I’d left school. But ‘sex goddess’ it was. The theatre big me a collective ‘good night’ and ‘of course you are’.

Here are a few of Alicia’s brilliant photographs while I was having my transplant. I would encourage you to click on these photos so you can see the more minute details. Below, the surgeons are suturing up my clamshell cut after six hours of surgery. Little did they know that they’d have to rip their delicate embroidery apart when I had to be taken back to theatre because I was bleeding.

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Surgery

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In recovery. Alicia snapped at the *exact* moment my anaesthetist realised I was bleeding internally, so it was back to theatre to resolve some ‘plumbing’ issues. It pulls on my heart when I see the nurse holding my hand. It’s the little things that for me, mean so much, and I know my family would have appreciated the comfort she was giving me, even though I was in a coma. It’s the whole ‘show, don’t tell’ mantra that writers use, or ‘demonstrate, don’t state.’ And in this gentle gesture, this is exactly what she was doing.

And so this time seventeen years ago, I was dying. I am just a few hours away from getting ‘the call’. I get a little introspective on Transplant Eve, but tonight I’m writing. Fitting  seeing as how writing has played such a big role in my survival. I’m having a quiet celebration with my folks tomorrow where we will toast my donor and her family. We will toast my heroes; so many peoples heroes.

Part three of my transplant journey will be with you sometime tomorrow.

(dis)connection

Yesterday was all about disconnection. After having another high-ish white cell count and another blood result that can be indicative of infection, rejection (it’s not rejection) or inflammation, my IV antibiotics were ceased because I’ve pretty much had all my body can take. Because it’s been two weeks, my CV line also had to be pulled. After two weeks they’re a high infection risk and the last thing I need is an infection in my heart. As you will see in the photo below, the site was starting to look quite red and angry, so I’m more than happy that it’s laying somewhere in medical waste. Although I’m still quite tired, I’m fairly sure it’s been the antibiotics that have been making me so dreadfully ill so I’m hoping to be firing on all cylinders by next week. I’m half tempted to go to the Ekka – a place I haven’t been since before my transplant. I have this craving to be unnerved and shaken back into life by something that spins me upside down. I need to do something unnerving – and soon.

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Here’s the catheter that was inside my jug-jug-jugular for two weeks. See the gunk? Eww.

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And here is my neck after my transplant nurse Margaret cut the stitches free and pulled out the line. It’s a little tender, and today there’s some bruising with my neck looking as though I’ve come off second best in a tussle with Edward from Twatlight. 

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The first thing I did when I got home was have a long, hot shower. It was neck-gasmic. But ever since Sunday, I’ve been thinking about my friend Sean because Sunday marked a year since he died. I felt his presence all day – even before it registered that it was the anniversary of his death. I wrote about the sacred time I got to spend with Sean just before he died here.

As the Kurt Vonnegut refrain flies, ‘so it goes’ … It will be seventeen years since my transplant on the twenty-second of this month. August is a time that is always tinged with a soupy mix of gratitude, survivors guilt and reluctant celebration. The transplant experience is  confounding in its conflux of emotion, though my mind feels so indelibly clear right now. My motivations have this seemingly robust lucidity about them because there is so much essence of spirit that’s driving my lived experience. 

But strands of thoughts loop across to my donor who I know was and is, always will be a girl in her early twenties. I know her age and how she died. I am not supposed to know, but I do.

Because we were so close in age, I find myself mulling over what she may have been doing this time seventeen years ago. Was she studying? Was she working? Was she happy? Was she listening to Jeff Buckley over and over like I was? What book was she reading, if any at all? Was she in love? Was she in that good, hard, impenetrable love I was in all those years ago? Had she fought with anyone? Was this day – today – a good day for her?

I will always wonder. You cannot have another persons lungs inside you and not be wild with curiosity and a little restlessness. I read about cellular transference and memory, and meditate about her family who I know selflessly donated all of their daughter’s organs. I wonder about how many of us are still left walking around with a piece of this girl inside of us? I’ll always be grateful, but I’ll always feel the familiar pull of sadness. If I didn’t, I’d question my own humanity. There is a storm about to roll across the city, so here is a collection of words I wrote long ago about what it’s like to ‘get the call’.

The night before transplant is …

bittersweet, pallid, rainy, painful and skittish

fearful and scattered from misplaced thoughts and morphine

full of heavy hearts and high hopes

stung by drunk boys and crying girls

the irony of chain smoking friends/father/sister

being hugged so tight by Tammy it hurts

stern faces, etched with what may not come to pass

red lights that have been run in the rush to get to the hospital

hope

waiting

thinking about dying on the table

asking my parents and my sister about my donor and their family: who is it/is it a boy or a girl/ how old are they/what happened/why are they brain dead/will I ever know?

stained by paradox

never far from my mind

saying goodbye with the hope of saying ‘hello, I love you’