Tag: gift of life

A trip of infinite sadness and regret

I’ve been sorting through index cards, rogue pieces of paper and old photos because I’m moving. Moving out of the city, and returning to the trees and all of the secrets they’re waiting to tell me. They’ve been calling me for a while, and it’s time. I’ve become weary of city living over the last couple of years, and the more time I spend at the farm, in the bush or up in the mountains, the more I yearn to be in silence, amongst the trees and the stars, harvesting bush lemons, herbs and having a veggie garden with a couple of rescue chooks. Maybe even a rescue dog one day.

People ask me if I’ll miss living so close to the city. No. And yes. I won’t miss the sirens and incessant traffic, the dust, the cranes, or the crimes against architecture which seem to spring up while I am sleeping. I will miss the sunsets out to the west, watching the lights come alive in the Gotham City building, my many murders of crows, and the kookaburras, rainbow lorikeets and magpies that gaggle in the trees every afternoon. Perhaps they might like to follow me if I ask them? I suspect that there are going to be many murders of birds and other wildlife where I’m going.

There are people I’m going to miss, but I can visit them, and they can come by any time. It’s just that it’s time for me to move on, and when an almost inconceivable opportunity presented itself, I leapt. It was a quick decision, but most of all, it was an easy decision (which are the best kinds of decisions).

I’ve started packing, and that’s where I found a bundle of index cards and rusty paperclips from a couple of my trips out to Barcaldine – another place that calls me, and one I hope to see later in the year. Below is some writing from 2001 and 2002 – long before I’d found my writing voice (I’m still finding it) – and it’s about my time at Cumberland, the cattle property where my dear friend Meagan grew up. Meags died in May 1999, and I have mourned the shit out of her. You cannot imagine. Or maybe you can. Grief is one cruel mistress.

In 2001, I finally got out to her family’s cattle station to see where Meags had spent so much of her life; a place she had wanted me to visit when we were both well enough. But that wasn’t to be after Meags died in May 1999 from Cystic Fibrosis – the illness we were both born with. The last time I went out was in 2013 when I was addicted to opioids. A part of the reason why I decided to get clean was because I was alive, and Meags was not. I realised that I needed to recalibrate my compass, so that’s exactly what I did. I daresay the next trip will be very different.

An infinite trip of sadness and regret

Thursday 9th November, 2001

Stock and forty degree anarchy

Here I am at Cumberland, wrestling with hollow hope that the clouds, thick and full of promise, might crack open and give me a belated baptism. Blue funny faces remedy the forty-three degree fever for one quick minute, the coloured ice glossing my lips until I’m a pale shade of cyanosis. Swigging down coffee doesn’t sit well with the melting barbs of ice in my throat; my teeth frozen in a futile resolution to my thirst.

Frogs croak with my hot feet moving across the floorboards, so I walk outside and sing to them. I sing to them that we are missing the rain, too. Cumberland and surrounding properties are still on town water for now, but for how much longer we do not know. We do runs around the paddocks dropping off licks for the cattle, making sure they have enough water, the grass and wayward sticks whacking the ute. I wonder if the stock will be here when visit next. The cattle aren’t fat by any means, and look like the animal kingdom’s walking dead.

A palomino dropped dead yesterday afternoon from colic. The mare had been sick for days, splayed on her side to draw out the pain, her gut distended as though she was ready to foal. Just before Kerry went to get the shotgun, she got to her feet, hobbled over to the fence, and dropped to her death in the dirt.

The stock will not die from colic. Instead, they will starve and thirst until rib cages protrude through paper thin hides; craggy, matted hair shrouding more bones and bleeding skin.

I try to write and I sit under the weeping willow waiting for the words to come, but they do not. The arbour is green, and it grows grapes, although I don’t know how productive it is. It looks like a green and twig laden blanket, covering wire and wood, and it moves me with the breezes that roll through the garden.

A hot, bullying wind has risen, and the sky has swollen with charcoal coloured nebula – clumps of hope just out of reach from where we stand sentinel on the prickly grass. I’ve never felt rain on my skin out here, and doubt I ever will. At night, I dream of pellets of rain popping on my skin, and me – coming alive in the mud as the water volleys against the dry earth.

*

In the city, I’m in limbo. I feel shackled and ambushed. Out here, I am free. I eat cheese and tomato jaffles and icy poles, drink hot coffee and cold beer – all the while looking at coloured vignettes of Meagan, her eyes like chocolate discs swimming on her face – her blonde hair swathing her young neck, olive and soft.

I feel a sense of permanence here. Something like belonging. I don’t know why I come here. It could be to be close to Meagan – to sit at her grave and memorial garden in silence. It could be to air my regret at not seeing her the day before she died. It could be to tell her what’s been happening – we always loved hearing about the other was up to. What adventures we’d found, what adventures had found us.

Or it could be so I can remember her, and to read those words on her epitaph – ‘Rest, little one, rest.’

Wednesday 2nd October, 2002

I woke late in the night and had a skirmish with what looked like a bird eating spider above my bed. After I’d half-killed it, it showered me with its babies. I trundled off to the shower thinking that it never feels right killing a sentient being.

In the morning, Sue still had the bread out on the table and the kettle and been boiled. The Walker’s had an ironic thirst for coffee. Ironic, purely because they can drink several cups of the stuff in forty-seven degree heat. The office and the bedrooms are air conditioned, and Jay had said year after year that he’d have the whole house cooled. ‘Maybe next year,’ Sue said last night.

Today had been no different after looking at the weather station that had been Jay’s grandfathers – the arrow pointing at ‘dry’, with the temperature stuck on forty-one.

In the afternoon, we transplanted two trees. The first one looked like it had more guts to it – fatter trunk, leaves more evenly splayed with plump branches, and not on too much of a lean. The other was brittle and grey like a ghost gum, its threadbare leaves devoid of a middle vein running through the ashen foliage. It didn’t have much spirit about it.

And so, today was the tale of the two trees. Kerry dug them out from the old station hand’s quarters where the grand bull ring once stood, the excavator bouncing around like a feather on the wind. His kids visiting from Warwick looked on as their Dad tried to uproot the trees as gently as one can with an excavator, and one by one they sprung up and out of the earth, averse to being torn away from their tree family. Kerry drove them back to the homestead, and gently set them down into where he had scooped out the dirt – Katrina pointing her freckled hand at where they needed to be. She had left a hose in each to saturate the soil, and when both were in, we watered them for another half an hour, and soon enough the weakling was on a lean.

Jay poured a rum for himself and a wine for Sue. Katrina and I had a beer each, our eyes mulling over the flat plains as the sun dropped behind the spine of the mountains far away.

Jay, a man of few words, looked over at the trees and said something about ‘waiting and seeing’. This day, like every other day, had carried with it thoughts of his daughter who didn’t survive, then he looked to the girl who did, with a lopsided grin. Me, a bottle of beer in my hand, lost in the stars of an inky sky that will always lead us home.

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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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My night without armour

May-August 1998

I was in the dying room. You know the one. It’s quiet. People slip in and out as though they were never there. Festering in a bed for three months, I had grown tired. My arms were the shape of soft baguettes, peppered with freckles like sesame seeds. Lips, a permanent shade of blue. Colourless fingers and toes – lily matchsticks, sans red ends. My hair had been falling out and I had forgotten how to use my legs. Twenty-one not out. For every year, I had lived four. I was a pale vintage just short of eighty-five. But I was sick.

Sick of white sheets. Sick of fluorescent lights. Sick of ward vagrants hobbling into my room, bottles full of piss hanging from petechia stained fingers, begging for my help; their gowns askew showing either flat and wrinkly bottoms or saggy, hairless balls.

Friday 21 August, 1998 8pm.

I watched Burke’s Backyard and said goodbye to my family for the night. Said hello to a morphine bolus. Like a little death itself, that pause from pain. I would feel every drop spread through each cell of my body; like someone had cast a hot blanket over me. It would anchor me to the bed, carving out a grave in the hollow of my mattress. Interweave me, you two thick threads, I would whisper; one flame licking the other in need of a partner. Show me mercy.

Saturday 22 August 1998. Midnight, or just after.

In rushes Daisy, my midnight oriental muse. She injects drugs into my chest to buy me another day’s grace so that one life may be taken and given to another.

Tonight it was to be my turn. Eight months and twenty-two days I had waited for the beeper to beep. But instead of its rapid fire chirp, it was a phone call, shrill and cutting. Fuckfuckfuckfuckfuck. I hang up the phone and nurses keen in and carry me into the toilet where I piss blood for the last time.

With my possessions gathered – my Auden and my Heaney, my copper bookmark and a sputum cup – the room looks like I have never been there. Flowers on my bedside table hold me to ransom – the colours having taken on a death hue. I winch my wasted legs into a pair of jeans, my flat bum loathe to fill the denim mould. Daisy finds me a shirt that disguises my barrelled chest, breasts having shrivelled long ago, but ready to be full again. I try to wedge my blue feet into my stinking blue converse while another nurse succours me with another jab of morphine.

The ambulance sits in one of the emergency bays like a glorified hearse waiting to transport the living dead. But what of the person whose lungs were going to be settled into my body tonight? Was it a man or a woman? How did they die? Was it a car crash? It couldn’t be. The lungs and heart get squashed like soft fruit between over eager fingers. Could it have been a brain bleed? How old were they? What of their family? What of their children? I wonder if it was a woman. Who would she want me to be? One woman dies for another – I didn’t want to disappoint. Responsibilities weigh on my wilted head, soon to be fat from steroids.

My mind peels off, focusing on the next breath. Anything of consequence, outside that esky with my or her or his lungs in it, worsted with each breath and I think ‘I don’t know how to be with this’. What I did know what that there were going to be chains pulling my ribcage apart. Pulling my ribcage apart so my sternum could break. Breaking my sternum so surgeons could push past muscle, sinew, bone, veins and nerves to get to my lungs – those blackened masses like giant mussels having sat in stagnant water; lips covered in downy fur, shell white and slimy, but like bedrock where no knife could pierce. My empty treasure chest. I likened the surgeons cutting through a dense back wood to find a decomposing body. They were going to uproot the trees poisoning the forest. Make the forest clean again.

Wet roads prompted thoughts of car crashes. Absurd conversations about public holidays and the road toll had been a primitive form of optimism. Easter was a pensive time. Then we’re told that hearts and lungs are squashed on impact. I would feel self-disgust mixed with equal parts of hope, but you learn to live lighter when you’ve been dying for nearly nine months, and friend after friend has breathed their last waiting for their second chance that never came.

The night I coughed up a cup of blood, my father said he’d find a triathlete and hire a hit man to save me. Is it selfish to hinge onto the notion that someone must die so that I can cease to exist and begin to live?

I sit up in the ambulance and spit out what looks like a brown slug, flecked with red. The cup is soon flooded with molasses – fatter and far blacker than any leech – and I rattle like a bag of marbles.

One-thirty am.

My red and white hearse clogs two emergency bays while the rain swathing the city has has evaporated. The sky is smudged with patchy clouds and the moon hangs with its silent lull, while winds fat with caution slap my cheeks; the warp and weft intangible in their bearing. Squalls skirling down from the ranges sprint off lands edge and the thumping blades of a helicopter unnerve me and I turn on myself; questioning whether my new lungs were being hauled across sticky linoleum in a store bought esky.

I’m then hankering for food. Hadn’t eaten a solid meal in six months, but I’m hungry. My boyfriend had dropped in at a late night store to buy me flowers and chocolate that I couldn’t eat. How I loved him.

People stood on the kerb – drunk boys and grieving girls. Grieving for what was, what may be, what may not come to pass.

Father chain smoking. Sister crying. Nuns praying. Mother’s hands wringing. Friends mouths twisted into concern. Thirty-six of them lashed together; spine against spine.

I’m taken up to the ward to an onslaught of questions and a nurse Ratchet type who tells us to be quiet – ‘other patients are sleeping’. She makes us feel like impish school kids until Chelse spits back, ‘she’s only having a fucking transplant.’ My doctor sits next to me, his hair and glasses askew. Dog tired and skittish, he tells me that ‘it’s not going to be easy’. The heck I cared. Just cut me open and do your dirty work.

Eight-thirty am.

Thick knots of shit slink down my middle. Dead skinks, their tails unmoving in soft peaks as slow, thick cramps cling to my bowel. A bowel collapse would make me feel less of a stranger. Instead, I am in the bowels of the hospital. Visions of dancing and having sex without a tank of oxygen suffuse my thoughts, then the rusted cogs begin to shift. Slowly at first, then faster and faster, and time starts to slip until I am all death throes and thoughts of ‘my-god-what-if-die-on-the-table?’

The sun had climbed out of the shadows of rain. A cloth cap is placed on my head and I am wheeled away to my very own green mile. The payload of valium dissolved, I look to see the congregation of thirty odd. The thirty odd I might never see again. What of my mother, my father, my sister, my partner? What would I do? I’d be dead. Shame it be that way.

Screams echoed through the halls and I didn’t know how or care where the breath was coming from to fuel them. My mother would later tell me she didn’t know how I made such a noise, but we wagered that it was my death cry.

I didn’t want to lay down in the room with lights as big as satellite dishes, because I was afraid that once my body was supine, I would die. The room was checkered with strangers in masks and gowns and after some soft words, the collective theatre voice bade me good night.

‘Save me, for I am the Sex Goddess’, I retorted. A nurse stroked my face and said, ‘yes, yes you are.’

I surrendered myself to the milk in the syringe; lily white, liquid purity. The kind of death reserved for prisoners on death row who would never wake. The anaesthetic was such a flooding wave of orgasmic joy, it was almost agony.

My armour is cut open so hands and tools can busy and bury themselves in my torso. My breasts are peeled up to my neck, and I am literally off my tits. In the photos I see four days later, I notice that breast tissue looks not dissimilar to a cerebrum – just more finely textured; the patterns more intricate.

While scalpels excavate masses of scar tissue and bloody holes are packed with gauze, I sleep. My ‘native’ lungs – like dead, shrivelled bats – are dumped into a plastic bucket, then surgeons ease in the donor lungs one by one. They stitch and wire them into my chest whereupon they are met with oxygen and inflate in a great rush of life.

My chest is candle wicked with such care; sewn up with silken loops only to be released with the flick of a blade and the pull of a string, for my lungs were swimming with blood and needed to be plumbed. After a couple of hours, the clam-shaped hole resembled a scar once again – my armour back on.

Sunday 23 August, 1998. 9.30am.

I open my eyes to tubes and lines down my throat, up my nose, in my chest, up my vagina and in my neck. A machine breathes for me and would for the next three days. My chest is raw and puckered, and four tubes the size of garden hoses stick out of my chest at even angles like badges on a soldier’s lapel.

I was going lose my breath, I was going to lose my dignity and I was going to lose my cheekbones. But I was coming away with my life – armour on, sheltering my fall.