Tag: altruism

The day I met my donor

I never thought I’d do it. It’s been seventeen years, after all. And even if I did do it, I never believed it would be this hard.

Mum and I had talked for years about going into Births, Deaths and Marriages to see if we could find her, but today on my own, I went into a quiet room – so quiet the air had a tenderness about it – and scrolled slowly through a reel of microfilm until I found her.

Today I found my donor.

I have to say it again because it doesn’t feel real – I found my donor. 

I had always known the rudimentary details about her, but never her name or date of birth; her exact age or the the colour of her hair.

And now I know because today I ‘met’ her just for a little while. I even got to see a photograph and wow, is she exquisite. A brunette, with shades of red. I knew my donor was a brunette. Don’t ask me how – I just knew. She was married and we share the same initials when she still had her maiden name. She was twenty-two and we were born in the same year. Her name is unusual; I never would have guessed it. She was married. At twenty-two. And at twenty-two, she died.

Her funeral notice reads ‘tragically taken’. Because she was. She was taken from her family in the most tragic of circumstances in her apogee; her absolute prime.

But then she gave. Gave life to me and from what I understand, several other people.

I knew yesterday I was going to the library. Last night was, in spite or because of, the most restful sleep I’ve had in months.

This post is short because I’m crying rivers and trying to process something that is profound and so much bigger than me. The only trouble is that I’ve opened a door I’m not ready to close, but this shall do for today.

All I know is that she lives through me, and I through the wonder of her. Every breath honours you, C. I just hope that I have been enough, done enough, am enough.

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.

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.

(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’