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.

14 thoughts on “My night without armour

  1. Firstly I just want to say how proud I am of being your relative. You are a truly amazing young woman.
    Telling your transplant story with such brutal honesty and exposing your vulnerability with such clarity was shocking yet rivetting for me. Testament to your bravery and incredible writing talent.

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  2. I could be crass and say you had me grabbing my saggy hairy balls and going WOW, but that would be so inappropriate! Humbled… your words have been expressed with such raw clarity that grabbing my balls just wasn’t enough.

    You have much to share with others… and you do it so, so well. Each moment is a continued blessing of more than you expected many times in the past. So humbled that our lives intersected some time ago… 🙂

    Each moment… is blessed!!!

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    1. Each moment truly is a blessing, even when we’re feeling it’s not. Ball or boob grabbing is highly underrated!! It’s always good to be unnerved. I am blessed to have you in my life XO

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  3. I think this is a raw and honest look at life and death in all its soft, fleshy, painful fragility. Life and death at war with each other and our soft pink bodies in the middle… helplessly straining and hoping. You bring a diginity to life AND death. You are a voice we need to remind us of the truth. Keep roaring!

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  4. Thank so much for sharing your story. As a parent of a baby boy with CF reading this scares me to death but I find it easier to know the possibilities than to live in the unknown.

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    1. Thank you so much for reading 🙂 So much has changed since I was born, but I always say that I was lucky to be born when I was because everything seemed to come at just the right time for me. I have high hopes for kids with CF now – I really do. Hang in there – I don’t know when there will be a cure, but I’m really hoping that it will be in my lifetime so it can help this next generation of CF’ers coming through. Big love to you and your son XO

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