Tag: courage

The week that was …

Last weekend saw me help shepherd my sister out of the shadows of a broken marriage and into freedom. Freedom from years and seasons of pain and sacrifice, and freedom born out of an indelible cost to her humanity and identity as a woman. A big group of people who love her ferried her out of her grief and into her new life on Saturday night where we celebrated into the night at a swanky bar in town. Having recognised the best thing about this ending is that there is now a new beginning that awaits her. That, and I have my sister back. Back to her maiden name and back to the person she was – not the broken, shackled woman she emerged as … there’s only so much I can share. We’re all little broken and our friends and families are the glue who build us back up to who we once were. That and love, of which she has in spades.

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But just when you think you’re getting on top of one thing, the wind changes and bowls you over. I noticed that my right nostril was a little sore when we were out, but didn’t think much of it until the next morning when I woke up a little swollen across the bridge of my nose. I hazarded a guess and thought I might have cellulitis – an infection in the skin – so I called my transplant consultant and he said to pack a bag and come to clinic the next day. It was a swift response once they saw me. After blood tests, I ended up having the worlds fastest sinus CT scan and was diagnosed with having septic sinuses. So yeah, a touch of septicaemia due to a slightly diabolical sinus infection (thanks Cystic Fibrosis – you just give, give, give …) I was taken up to ICU for a central venous (CV) line to be inserted into my jugular so powerful intravenous antibiotics could be started as soon as possible so the infection wouldn’t spread to my places like my eyes or my brain. Here was my view for the afternoon. Whoever invented the heated blanket box needs a Nobel prize.

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It was tough going. The doctor who performed the procedure was determined not to use a scalpel on my ‘soft and lovely’ skin, and because he had to push in 14cm of tubing through my skin and into my jugular vein, he pushed as though he was doing CPR on my collarbone. My chest was pushed into the bed so brutally and it really hurt me (there’s only so much local anaesthetic can do). While I was waiting for a bed on the ward, intravenous vancomycin and meropenem commenced. I’m also on oral ciprofloxacin because IV cipro totally incapacitates me and tears my gut to shreds.

I was in a lot of pain from my nose as well as having a tube shoved into my chest, so I was given some pain killers for the night. And it was one of those nights where I had a nurse who just should not have gone into nursing. On Tuesday, I woke up looking like I’d been in a cage fight and I now know what it feels like to have my nose broken. It’s really quite fucking excruciating and I have a newfound respect for boxers and other sportspeople who have their faces regularly rearranged. Here I am looking a little different to what I was on Saturday night …

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So I need sinus surgery and I need it soon. The last time I had surgery,  my ENT specialist said that they were scraping the base of my skull and that removing the actual infection (the snot) was like pulling out chewing gum.

And so the week went on. Yesterday was my graduation from my pastoral care training, but I was too ill to go. My beautiful group kept me updated with photos and videos which made me feel like I was with them. I was so disappointed not being with them as we officially became hospital chaplains, but when your body shuts down you have to listen (even if it is telling you to forget about your antibiotics, get in a taxi and go to your graduation).

The universe works in remarkable ways. I’ve always found that with pain comes great beauty. Thousands of words of poetry have poured out of me and I’ve come up with a humdinger of an idea for a poem that involves water. Of course.

After coming home today, and then having to return to hospital twice, the levy finally broke. Today was tough and I’m simply worn down from pain and the onslaught of infection in my body. My white cell count is up and the gravity of the week had me drowning. I think a little piece of me broke. I can’t even do a solid shit (and won’t for at least another ten days), I got my period yesterday, the skin where my CV line is is red and angry and my belly is bruised from clexane injections to prevent blood clots, so … I took a deep breath, put Xerxes, HWV 40: IV. Largo (Ombra mai fù) on repeat, had a long, restorative shower and redressed my CV line. This is how it looks sans adhesive dressing. The four stitches are to keep the line anchored so it doesn’t tear out of my jugular. Tears are optional.

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This week has left me feeling crestfallen. I got through the Harry Potter book where Dumbledore dies and the nurses looking after me thought I was howling in pain, but it was more existential – observational even. It’s odd because I’m so used to crying with joy – not immense sadness. Out of the mire of pain comes a stockpile of words – more than I even need, so after my blue moon ritual tonight I’ll hook myself up to my IV’s, put words down – both gently and ferociously – and feel safe in the knowledge that tomorrow is a new day.

Topography

She sits by the windowsill –

window seat holding her shearing form.

Fingers of sunlight splay across her back

and she smells tuberose on the morning air

as her body is swallowed by the full throat of summer.

 

Shifting her form to a gentle lean,

she spies a framework of desire

where the language of hummingbirds between webs of light

moves faster than the bay of the moon.

 

She swings her face towards the floor,

unknotting her legs from unfeeling.

Solemn of face and swollen of neck,

she looks to her breast – just the one.

 

A cleave in her chest – a gift.

The skin on the other like corrugated tissue paper –

the markings like an embroidery of truth

where she tells herself that it is just topography

and that she is safe.

Learning to Die: my TEDx talk

Yesterday my TEDx talk went live on TEDx Brisbane’s YouTube channel, and I’ve had an almost overwhelming response about speaking about my life (and deaths), and my beliefs and truths about death and dying. Here it is – Learning to Die.

I’ve been bathing in the beautiful waters of Death Walking training over the last two days, the last of which is today, and being able to come together with other ‘deathies’ has been such a gift; so serendipitous in its timing. When I looked at my phone at morning tea, I couldn’t understand why I had a flurry of messages, though it soon registered when friends and strangers alike were reaching out to congratulate me. Mission accomplished! And so here it is. It’s been released to the the world, and it’s there for people to do with it as they wish.

So make yourself a cuppa or an espresso or whatever your poison is and sit down to hear what I have to say. And please – let me know what you think. Comment, share, repost. I’m feeling happy and grateful that my words can be heard should you so desire to listen, and if just one person walks away – or leaves their desk or kitchen table – a little more fluent in the language of death, then my work here is done. Peace.

Regime #4 gets a smashing review (as does my poem)

I am, at my very core, a poet. Along with memoir, it was the first form of writing I chanced upon as a child. I wrote my first memoir when I was six – cute and heart-heavingly sad. I still have it – or at least my Mum does. HB on foolscap. Illustrated.

But this post is about poetry – not just my poetry, but the work of the wave of new Australian poets sweeping through the poetry arcadia like Michele Seminara, Philip Ellis, Nathan Hondros, and Stuart Barnes – all genius poets and what’s more, my friends.

And so we were reviewed by highly respected Blue Pepper – a poetry blog I’ve long admired – http://www.bluepepper.blogspot.com.

My poem ‘Primitive’ received the following praise – And the sheer exhilaration of Carly-Jay Metcalfe’s “Primitive” was a true revelation. It is the exception that proves the rule regarding the longer poems, a cinematic rollercoaster ride of a poem that set this bruised old heart racing with lines such as “Eating from the hands of the land,/summer steals in”.

And this – it is the thrill of such chance discoveries that make publications such as Regime 4 so invaluable to the literary wealth of a burgeoning culture. Such serendipity has long been leached from the pages of more august publications in this country, where the same old names from the same old generation continue to pepper the indexes as though “Oz lit.” were in perpetual holding pattern. For such serendipity and courage, Bluepepper dips its hat to the editors of Perth’s Regime Books.

I am beyond thrilled – not just with the generous review of my work, but with the love the other poets in Regime #4 received. Thank you for reviewing us, Blue Pepper. I’d really like to extend my gratitude to Nathan Hondros for showing true courage in believing that the printed book STILL matters. For me, it will always matter. You can’t dog-ear or write in the margins of an e-reader or revisit the page over and over until it’s that little bit flimsier than the rest because you have loved it so. There is nothing like holding the spine of a book in your hands as it hovers above you in bed; that heady smell of print so close to your face.

When I pick up a book, I smell it. Strange? Not as odd as you think. It’s a comforting scent for me, because between the covers of a book, there is someone else’s story. I remember when books would arrive for me in hospital as a little girl; books I’d ordered from the book shop or books from the library. I wouldn’t and couldn’t wait to split their spines for the first time where there would be other worlds, characters that stayed with me for the rest of my life, and stories that grabbed me by the throat and refused to let go.

I have some ridiculously exciting poetry news to share soon, so stay tuned.

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.

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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.

Ineka

I have always been captivated by books and reading. It would tug on me – an exquisite pull moving me away from wherever I was, which was for the most part, a place where I did not want to be.

Two books that have lingered are ones that Ineka recommended to me – Colin Theile’s ‘The Undercover Secret’ and Louise Fitzhugh’s classic ‘Harriet the Spy’. Reading was better than prescription medicine; better than physio, anti-biotics, being tipped on a bed until you were all but hanging like a bat with your feet hooked under the mattress so as not to smash your skull on the headboard.

I became Harriet.

So much so, I created my own spy route. I found myself a reporter style notebook and a magnifying glass, wore a long olive green vinyl coat and a Fedora tipped on its side. With my long coat, my awkwardly tipped hat and my notebook, I’d loiter around the neighbourhood, my feet idling above the asphalt, writing down everything I saw.

And yes, everything was suspicious.

Reviving thoughts of Ineka is something I do well because we spent so much time in hospital together. After the lights had been switched off, almost savagely and not leaving any of us with a chance to settle after what could have been a traumatic day or night of missed cannulations, being held down on that plank of a table in the treatment room or a run in with the matron. Or if a friend had died behind closed curtains while relatives were ushered in and out in their disoriented grief. A grief they had nowhere to place.

Long after we had been told to scramble into our beds, Ineka would bide her time until all the beds in E cube were silent. Then she would wait to hear the gaggle of nurses up the other end of Turner Ward, gossiping and writing in charts at the front desk.

You wouldn’t hear Ine rise from her bed because there was nothing of her. But you could always hear the breath rattling in her chest – her signature sound. Sleep has never come to me easily and so I would see Ine. She would read by the window, her only light being thrown down by the moon and the lights from the park that always seemed within reach. Everyone would be asleep and I would watch Ine read.

I wouldn’t have been older than seven or eight, yet I still hold her silhouette in my mind – a little girl with a curved back, cradling the spine of a book in her hands, her massively clubbed fingers like matchsticks shaking from Ventolin, trying to stifle her coughing so she could just keep reading. Ineka’s coughing fits were more akin to marathons and were never easy to listen to or watch, except that you would because you knew that her suffering was so immense, you felt compelled to listen. She would turn equal shades of red and blue and there were times we thought she was going to breathe her last crackling breath. Many times I watched as she bled from her lungs and out of her sweet mouth.

But in that muted light, the shape of her face, that curve in her back bones, her thick dark blonde bob, her purpose was authentic. Ineka knew she didn’t have long on this earth. As did we all – patients, nurses, doctors. I like to believe that Ineka sees me write, and that she would read my work if she were still of this earth, or simply that she does read my work. Even as a little girl, I remember saying that it was like she was dying all her life. And it’s here where it hurts to be alive.

So why couldn’t they just let her read?

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