Tag: death

Another angel at my table

I am, right now, stuck in that stinking, mephitic mire that is grief. It is as though I am cemented to the one place. Just about everything hurts, and just about everything makes me cry. Some photographs arrived in my inbox around lunchtime, and that mallet of sorrow swung a blow so hard that I lost my breath. Tonight, my eyelids are heavy, and the circles under them tomorrow will make my face look overcast and I will feel bone cold despite the spring. I am finding that optimism is just one more step into fear, and that I am a heavy peg that just doesn’t want to fit.

On Friday morning, I’m getting out of the city for a few days to celebrate the birthday of one of my best friends. This time last year I was in Barcaldine and Nic and her husband were about to join me at the cattle station I was staying, where they got to meet my friend Meagan’s family. Meagan died from CF in May 1999. Her ashes lay in a granite boulder at the family homestead under a weeping willow, and I’m looking forward to getting back out before too long, for it is always too long between visits.

I haven’t written for some time, and in that time, one of my oldest friends has died from Cystic Fibrosis. I am yet to work out whether Sean is number sixty-nine or seventy, but I know that he would have preferred to be sixty-nine because he was a dirty bastard.

About ten days before I went down to Melbourne to see Sean, we had an incredible two hour conversation. I was taken aback by his energy. He was enjoying having his family at home with him before he went to the hospice where he would die. We talked about our fuck tonne of dead friends (because there is a fuck tonne); about his greatest loves, all of who had CF and had died long ago, and what we used to get up to as kids. He said that after all the friends we’d lost, he’d always wanted just one sign. ‘Just one person to come back so I know that there’s more to this. Just one person so I know they’re there’, he said. I told him about the visit I had from our friend Rachel Murphy when I was around six. He was stunned – and a little pissed off, I think. He just wanted there to be something. Just not nothing. I told him there was something; he was still very unsure.

When I got to Melbourne, my dear friend Camille picked me up from the airport. It was a Sunday, so we headed to a homely and hipster little place where we sat by a booming fire. Cam has also had a double lung transplant, and we shared an afternoon of secret women’s business by that fire. We CACKED ourselves silly for a couple of hours and both enjoyed some highly diabetic-unfriendly food.

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By the time we got back to her place, it was night time so I thought it best I call Sean’s sister, Shannon. She asked if I could get there as soon as I could? He was fading fast and wasn’t expected to see through the night after having been put on a morphine pump that day. We had about a forty minute drive ahead of us, but it was Sunday – the traffic was light, but Cam still ran a red light did some quality organ donor driving while I willed Sean not to leave me without getting to say goodbye.

‘You’d better not fucking die on me’, I kept saying. ‘Don’t you fucking dare.’

We reached the hospice where I was met by Shannon’s husband, Troy. There were a few close friends and family in the waiting area who had spent some time with Sean, and Shannon basically pushed me into the room and said to spend as long as I needed. I walked into the darkened room. His breathing was fucked. I knew he was fucked. His mouth was open. I sat beside him and stroked his hair. I said quietly, ‘Hey Seany. It’s me, Carly. I’m here, sweetie. I made it.’ Not immediately, but after I’d said his name a few times and given his head a rub, he started to wake up. He said my name, and I just kept saying, ‘I’m here, I’m here mate. I love you.’ 

And then he began to talk. We talked about sex and politics; he said the entire front bench were useless, with which I agreed. Then, holding my hand he said, ‘Everyone’s here. Everyone’s here and they’re looking at you.’ He’d got what he wanted. A sign, if you will, and what a crowded sign it would have been. All of our friends, his early loves Rachel, Carolyn, and Leanne and his last great love, Veronica. I looked up and whispered, ‘Hi’ to acknowledge our friends who had surrounded us. I felt them there. The air was buzzing with an energy I’ve only experienced a few times in my life, and I silently thanked them for being there to ferry Sean on his way.

His sister Shannon and his friend Kate came in, and we had a Baileys. Sean wanted a Baileys coffee, so I gently placed a palm behind his head and encircled the other around the cup, which he swiftly brushed away, determined to drink it himself, HIS way. And here’s where I understood why. Here was a man – a real man – who had so desperately wanted to die with dignity. And to die with speed. I spent some more time with him, got the nurse to give him more pain relief, then left thinking that by the time I got to him the following morning, he’d be gone, or very close to. He told me he was happy, and I said I’d see him in the morning. Our last words were, ‘I love you’ – the best anyone could hope for. Camille drove us home and we had cuddles on the couch with her dog until just before midnight.

I didn’t sleep. My head may have felt like a medicine ball, but I was still in the room with my friend – and all of our friends. My body was buzzing with pings of energy, and I could see sparks firing off my skin in the dark.

*

When I arrived at the hospice the next morning, Sean was sitting up in bed, fully cognisant (think intelligent, rude and witty) and eating. He had not long ceased taking all of his medication and wasn’t having any artificial feeding so he could control his dying process and make it as short as possible. It was now I began to wonder how fast it would be if he was still eating and fuelling his body. When you’ve grown up surrounded by dying, and  dying and death is your vocation, you tend to ponder about things like this. He ate his entire lunch; even closely inspecting the viscosity of the pumpkin soup. It was then I realised that he needed more morphine and a relaxant to make him more comfortable. The nurses agreed. I know the trajectory of a CF death like the topography of my own breasts, and so he was given a higher dose and by the time I left later that afternoon, he was quite sedated.

Not long after lunch, we were introduced to a lovely lady who was taking photos for the hospice who were updating their website. We were so grateful for the fortuity and relief it provided for those of us who were in the room. Sean had never been camera shy. Below is one shot that Sean’s brother-in-law took while we were snuggling. He cracked dirty jokes and grabbed my ass 😉 For someone who’s dying, I think he looks fucking spectacular.

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When the shots from the photographer popped into my inbox today, I proceeded to completely lose my shit, particularly over this one, because I feel as though he is  comforting me, when I should have been comforting him. 

the comforter being comforted

Sean never regained consciousness and died just after midnight on Saturday 9th August. I was able to see him one more time, but by this stage he was deep in the warmth of a CF coma. It surprised and upset me that it took him so long to die. What didn’t upset or surprise me was that he wanted to die alone. He didn’t want anyone seeing his last breaths. As usual, but most importantly and as he wanted, Sean was in full control.

Over the last couple of weeks, I’ve come to learn more about Sean than he had ever told me. Mostly because he was modest and we were too busy trying to outdo each other with dirty jokes. He was one of Stanford University’s ‘who’s who’ – an invitation only club of great minds from around the world. Doctors and professors spoke at his funeral in Melbourne, and on the 23rd August, we had a memorial for Sean’s Brisbane family and friends, so this was to be my first time as a celebrant.

I had been doing well up until I sat down for the photo montage that Sean’s sister Shannon had put together. When I saw the photos of his transplant recovery, I was fine. And then all of a sudden I wasn’t. I walked back to the lectern and expressed my excitement, happiness and cherished relief that Sean had received his second chance just seven days after I had received mine. The day before Sean’s memorial marked sixteen years since I had my transplant. I had felt strange for having celebrated it, and then guilty because I wasn’t celebrating and I was alive and Sean was not. I took a sharp intake of breath to seal off any more tears, but the levy broke and a rush of tears descended, which would have been awful for everyone there because I look like a drowned hog when I cry.

I’ll always remember Sean as the tall, skinny, lanky kid who grew up too fast, simply because of our illness and his place in life. I also hadn’t known how much he had suffered at the hands of bullies in school. I wanted to scream when I heard his brother speak of this. I wanted to know every last asshole who had teased or tried to fight him. I was enraged and devastated that this had happened to my friend and I began to feel indignant with the world. Why did this have to happen to Sean? I will never understand. Suffice to say, kids will be kids. And kids can be assholes.

And so here I am. Anchored to grief. In fact, my skin stings from it. The hurt trickles into every crack and it permeates every cell of your being. You physically hurt. You ache. It’s like ripping yourself off narcotics when you’re addicted. I thought I was prepared and now I don’t know how to go on, except that I have to. I have study to do, a body to nurture, books to write, a soul to feed, family and friends. I can’t help but feel like an empty vessel. But then I think about those who aren’t even close to treading water – the sinking stones of this world. I want to pick them up, but can’t. I’m in the water with them, but they’re out of my reach.

And you know what? Sean would be PISSED OFF. He may have wanted people to be sad, but not like this.

The night I lived again: part one

I’m finding it hard to concentrate on my study today. It’s that time of year. It’s Transplanniversary* time. The 22nd will mark fifteen years since I was (at least this is how it felt) thrown back into life after being ripped from that tenuous march to death. Below is a photo me on my 21st birthday on New Years Eve in 1997 (my actual birthday). Between Christmas and here, I knew I had to put myself on the transplant waiting list. I’d been remarkably unwell at Christmas and the days after, but by some strike of grace, I was pulsed with energy for my twenty-first birthday. Looking at this photograph now, I look so serene and calm. Just like any normal kid. I look at this picture and think, ‘Pretty. Pre-transplant boobs. No scar. BT. Before Transplant.’

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New Year’s Eve 1997
 – my 21st birthday.

But when I peel away the layers of this photo, I was anything but a normal kid. I had the weight of my life on my shoulders (and someone’s eventual death who would save my life) and it burned my bones to ash. I didn’t want to be on the transplant list for my birthday, so I put my beeper away for the night and partied for nearly three days with friends, some of whom had come as a surprise from overseas, because some people were in on the fact that this might be the last party I’d have. My mum knew. My Dad didn’t. Mum knew because she had been there every single day, at every corner of my de-evolution. While C.F snapped at my heels, we tried to keep the multiple infections at bay with brutal antibiotic regimes, and towards the end, months of hospitalisation. Mum had also seen so many of my and her friends die while waiting on the transplant list, or not even get on the list at all. They simply just died.

My Dad is an eternal optimist and for quite some time, thought I could possibly regain some of my lost lung function. He was both optimistic and in denial, so the day that I literally couldn’t get out of my boyfriend’s car to look at my new room, he knew I was in trouble. I knew that he knew, and I remember feeling an absence, almost like a bereavement when he looked at me with his blue puppy dog eyes, as if to say, ‘please – PLEASE – don’t get any sicker. We’ll somehow get you lungs.’ I recall jokes about assassination attempts on triathletes.

Thankfully, my sister had come back from London so we could spend the remainder of my time together. I had been so shocked when she left in the February, it was as though my body had been hollowed out until I was a shell of skin and bone. For two weeks following my transplant, she didn’t leave my side. The night of my transplant, she was inconsolable. To see her like that was incredibly distressing and there was – until I did vipassana – much guilt associated with her, my parents and my friends feeling so unanchored and so very much in despair at my condition. I still find it hard to wrench my head and heart back to that space of seeing my loved ones not just feeling, but looking so adrift and hopeless. Literally hope-less.

I have hundreds of images that were taken by my friend Alicia Alit-Trevatt, an exquisite photographer who I met in the January of 1998. Me and my transplant journey were to be her subject for her final piece of assessment for her photography degree. We signed all manner of legal waivers with the Prince Charles Hospital, so that if I was to have the transplant while I was still the subject of Alicia’s project, she could be allowed entry into the theatre to take photographs of my surgery. As luck would have it, Alicia was also an intensive care nurse which bought us of lot of clout. The doctors and surgeons were more than happy to have her in the O.R should the transplant proceed. This is one of Alicia’s first images of me (a photo of a photo, so not the best quality). I am 21 and on the threshold of falling in love.

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For nine months, Alicia followed me around to all manner of appointments, parties (there were a lot of parties in 1998, and so much drinking), outings and modelling shoots like the one below. By another stroke of grace, I was disconnected from my port-a-cath for this nude shoot with my friend Sharon Danzig.

IMG_2036IMG_2037In the days preceding my transplant, I was in both chronic and acute pain and on morphine (before palliation was an option for Cystic Fibrosis) as my lungs had shrunk and essentially died from a lifetime of infections, cysts and bleeds. I knew I was dying, and I wanted Alicia to document my impending death.

But then the call came just after midnight on the 22nd August, and when I arrived at the Prince Charles hospital after being transferred from the Mater, Alicia was there with camera in hand, her spirit shining. I think she knew it was going to happen. But we did, too. There was never a question as to whether the lungs were going to be ‘mine’ or not. My family and friends had never heard about false alarms. I remember my Mum saying, ‘This is it. It’s going to happen. The lungs are yours‘ and I believed her. I had to believe her.

I remember my transplant doctor Scott Bell saying ‘this isn’t going to be easy’, and Alicia must have depressed the button on her camera at around the exact time Scott told me this and about what lay ahead. I just wanted my old lungs out and the donor lungs in.

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Scott and I the night of my transplant.

Part two of the story to follow, but for now, here is a poem I wrote last year about my transplant experience. It’s in a very raw, unpolished state.

Thrown

When you’re thrown back into life, you’re thrown from a moving train.
That first thump and roll; the aches and bruises that follow
untether you from your carriage.

Going from an empty husk of a woman – all lily-white like a hollowed out cockleshell –
empty but for the roar when you nurse it against your ear –
that was me.
My tender armour covered a pod of barely working organs
where there was a flicker of movement in the rattle of wet lungs and a clogged throat.

*

I would see things from my bed because I couldn’t walk anymore.
My muscles had melted into small pockets of goo
and I’d bend my head to see the leaning moon,
so still on its haunches – lazy, laconic and deathly still.

I had always shunned the sun and watched the moon.
Silently I would call it; aching for it to speak with me or move just a little,
but there it sat like a mute friend – giving me the answers I needed –
a silent partner to ricochet off my rattling chest and bag of bones
where I’d reach into sapphire skies and pray for Bedouin.

I was all tied up on the wrong end of the dream, dripping time.
My chest cut open and sewn back together like a clam – a cautious cut.

Hurled back into life – that rattle now silenced and replaced
by the pulse of machines breathing for still bleeding lungs,
taken from another who was now dead,
and lowered into me like the hull of a virgin ship into water.

*

A rekindling; the universe wanted to keep me.

In the daytime, I would wake up
with eyes like a hunted here,
knowing I was alive because I could feel
that hose in my mouth and its slink down my throat.
But more, I felt the fire beginning to burn on my chest.

I’m at the coal face of my body,
wondering how I came to be here – alive and hurting –
all dry lipped surrender.

Mad as a circus cat,
it was an exercise in patience until the next time I woke up –
snapping and grabbing at the tube
until a milk filled syringe was emptied into my neck and I knew the fight was over.

When the tube was pulled, my cough was a projectile.
A quadrant of doctors, gathered in the corner like vultures,
laughing about some dialectical shit.
My first words – ‘get the fuck out of here’
I was crying and trying to shout with my wretched vocal cords.
They moved to the desk and I shouted ‘you disrespectful cunts!’
I never saw those doctors again and that was probably best – for them.

This was the first time I’d been thrown.
Thrown onto an operating table, flung into recovery,
sucked back into the furnace of theatre and ferried out again.
Funnelled into a solitary pod, the hose wrenched from my raw throat
and then I – hosing away doctors out with my mouth.

*coined it

The dream starts here

I have a passion for life and death, and death and dying – specifically, palliative care, oft times referred to as ‘end of life’ care. For many years I’ve wanted to be a palliative care worker, and in 2010 I began my ‘Karuna Journey’. As I walked through the doors of Karuna, I could feel myself smiling. I felt like I was home, and that this is what I wanted to do with my life – to look after the dying, or as we say in palliative care, to help people ‘die a good death.’ After all, it is life’s only other true certainty (taxes are not). Through Karuna I studied two levels of ‘Spiritual Care with the Dying’ with Tenzin Chodron, an earth angel and Tibetan Buddhist nun who works at Karuna, giving clients and their families the spiritual support they both seek and often crave as they come to the end of their lives.

The last two weeks have been a cyclone of questions and answers. I’ve been in contact with the lovely people from the Flinders University post-graduate Palliative Care program, because I wanted to do the Graduate Certificate in Palliative Care they offer. The only problem is that I lack the appropriate health degree (I’m sure as hell *never* doing nursing, and I bow down to all nurses) and practice lead experience, so with their guidance, kindness and a couple of suggestions, I’ve enrolled to do a Graduate Certificate in Human Services through Griffith University which will essentially be my segue into the course I so desperately want to do through Flinders.

By the skin of my teeth, thanks to an agile email eye and persistence, I begin studying next week gahhhhhhhhhhhhhhh which means that I’m going to be a student again. This excites and terrifies me in equal measures. The course is part-time and will take me a year to complete, and in March there is a volunteer intensive training course run by Karuna. I applied to do this intensive this year, but for some strange reason – and I’ll put this down to the universe working in fucked up mysterious ways for the greater good – my application went M.I.A.  I had been waiting ever so patiently (nearly ten years – I still have the original bright yellow brochure from Karuna), and of all the things to have happen, knowing I’d slipped through the cracks left me feeling crushed and unsure about my future. It was something I had wanted to do for so long, and I thought ‘Yes. This is it. I’m actually doing this!’, but it was not to be.

I can deal with 99% of ‘difficult’ situations by dusting myself off and pulling my boots back on, but this had me howling for a good couple of days. Worse than any heartbreak, I would have to wait another year – a year I may not have due to the nature of my dis-ease. I didn’t have time to wait, and coupled with the fact that I had a suspected heart issue and a raging chest infection, I was one very sad girl. But still, I polished my boots, pulled them back on, and had ultimate faith that the universe would provide – I just had to be open to it.

And so here I am on the eve of becoming a student again. The dreaming stops and the real and tangible begins.There’s the faint taste of ink and paper on my tongue.

Tonight I tilt my head towards the sky; the moon slung high in its splendour. My tea bursts with vanilla as it wakes my tired mouth and warms my belly; City and Colour is on an endless loop, and I’m happily walled in by anthills of books: Adrienne Rich, Sharon Olds, Susan Sontag, Gloria Steinem, Betty Friedan, Patti Smith – my journey women who so boldly cut a swathe through what they recognised as the binds of their lives with the ultimate enterprise and courage in a world so fuelled – and consequentially flawed – by fear. In its place there was blind faith, impudence, fabulous spelling and grammar and an absence of fear.

Life makes me happy, as does death. Both as ambrosial as the other.

Below: YAYYYYYYYYYYYYYYYYY!!!!!!!!

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