One day only: my name in lights!

Last week, I joined the Queensland Writers Centre #8WordStory challenge on Twitter, and out of thousands of entries, the audaciously talented Nick Earls chose one of mine to feature on a digital billboard from earlier this morning until late tonight. 

It’s a bit of a thrill being chosen, because there have been so many prolific writers who’s stories have been featured. It’s the closest I’ll be to ever having my name in lights, so thank you QWC and Nick! 

My Twitter handle is @thedeathmidwife, and the billboard is on Bowen Bridge Road at Herston in Brisbane. 

With a little help from my friends?

I don’t usually share fundraisers, and I don’t have any time for often vacuous fundraising campaigns, but this one is so far from vacuous, I don’t even know where to start. I’ve said time and time again that Cystic Fibrosis is a fucker of a disease. It takes everything both necessary and dear to you – your breath, your mobility, your dignity, and then your life. As I roll through life, it just keeps taking. The only thing it’s ever given me is an almost debilitating sense of fear.

So I’ll cut to the chase before I *totally* lose my shit.

I grew up with a lad called Matty Kidd. – one of those rough and tumble really good kids. We both loved metal, and even though he wasn’t in hospital too much growing up, he was one of those kids that left an impression. I was so surprised when Matty contacted me earlier this year. If I’m truthful, I’m always a little taken aback when a CF’er I haven’t heard from in a long time writes me or shows up at a funeral because the simple and brutal truth is that they’ve died – I just haven’t heard about it. The CF grapevine doesn’t work like it once did, because there’s only few of ‘old skool’ CF’ers left.

Matty’s partner Racheal had just given birth to a healthy son – he was a Dad! Matty sent me photos of him and his beautiful baby boy, and I cried tears of joy that Matty was still alive and that he now had a beautiful little family of his own. He’d been assessed for a double lung transplant, and while he had all the normal fears, he knew it was the best decision he could make for his young family.

Last week, Matty received his transplant but he suffered catastrophic complications shortly after and he died over the weekend. He leaves behind a shocked and bereft family and friends, and my beautiful friend Kate – also a double lung transplant recipient – has created a gofundme page. Ironically, Kate and I have rolled our eyes in the past at the entitlement of people who use crowdfunding for things that aren’t for something legitimate like medical expenses.

The reality is, Matty’s family need financial help as they plan his funeral, and to prepare for a future without their son, partner, father, brother and friend. I can’t even imagine having to face such a thing. If a potato salad can raise $55K on Kickstarter (I’m not even joking), then we can do better than $20K for real people. So I guess this is where I share the link. I’d be ever so grateful if you or anyone you know could donate to this worthy cause – https://www.gofundme.com/please-help-towards-jakes-future

Matty, you will be so desperately missed. Your memory will be kept alive for your little boy by everyone who was lucky enough to know you.

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Jake’s ‘birth day’
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Matty, with Jake and a PICC line in his arm to administer intravenous antibiotics.
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Rachael, Jake and Matty
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Father and son …

Transplanniversary, with a solar eclipse chaser

We all reach places in life. Crossroads, turning points, junctures, choices, decisions – even Rubicon moments. For me, after nineteen years, I’ve reached a place of happiness and peace having come into the quiet of my heart. I feel settled. Life is simple, so I’m going with the ease and grace of that.

I’ve done a lot of letting go since I did some deep spiritual work earlier in the year. Relationships, patterns, behaviours, concepts, survivor’s guilt … the list goes on. We all release shit as our lives evolve, and it just so happens that this has been the year to let go of shit that just doesn’t serve me anymore.

Last night, I did a solar eclipse meditation where I anchored myself to the ground, and drew in the energy of the stars, the sun and the moon, and plugged into cosmos. This morning, I released it. I splintered it into a trillion pieces so that soft shards of love went to every human, animal and plant. Then I made myself a cup of tea, and sat in the garden; the sun at my back, the wind brushing my skin, and the hum of bees and the prattle of birds in the peach tree.

There was no rush. Just the warmth of the sun above me, a hot cuppa in my hands, and two dogs that came to greet me after their breakfast.

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It’s hard to believe that as I write, this time nineteen years ago I was on life support in intensive care after having surgery for a double lung transplant. I very nearly croaked it, as my friend Nic would say, and over the years I’ve come far too close to dying more times than is comfortable.

Like last year, I’m going to mark this year’s Transplanniversary by having an otherwise ordinary day. There’ll be no celebration. Instead, there’ll be a silent commemoration for my donor and her family who I know are still grieving after nearly two decades. A family who will grieve for their daughter, sister, wife and friend until the end of time. That is something that is never lost on me. Not ever.

There’s so much grace and wonder in the every day, and we forget that it’s even there. We’re all guilty – focusing on shit that shouldn’t concern us, like what people think of us, our beliefs and values, how we look, how we should act, how to go about our business, life, relationships.

The older you get, the less attention you dedicate to what others think about how you should be living your life. You only get one, so my hard won advice is to gather yourself up and find the marvellous in the mundane (for some strange reason, doing laundry brings me unparalleled joy), and revel in the fact that after all these years, Dr. Seuss is still right – ‘today you are You, that is truer than true. There is no one alive who is Youer that You’.

So go and grab your beautiful, messy life by the vagina (they’re far more resilient than balls), and shape it into something you’d be proud to look back on either at the end of the day, or at the end of your life. In the end, the only thing that matters is the love you give, the love you share, and the love you get back. Oh, and be kind, compassionate and do your best to help other people. That’s the secret to true happiness. You can thank me later.

Endnote: My mum turns seventy next week. She has loved me, nurtured me, taught and guided me. She’s been the kindest, most loving and selfless mother a person could ever ask for. Yeah, I know – that’s a lot for a person to be, but she’s been all that and more. Jewel by name, and Jewel by nature. Also the bravest person I know. Love and kindness is the answer, people.

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 Spirit of Things

For the last eighteen months, I’ve been on the organising committee for the 2017 Spiritual Care Australia conference, alongside three other incredible spiritual carers, Tanya, David and Pauline.

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Earlier in the month, the three day spiritual bonanza/lovefest was held on the Gold Coast where it was a resounding success (no, I’m not being biased – we kicked ass and totally killed it). We had extraordinary keynote speakers like Molly Carlile AKA the Deathtalker AKA current girl crush. I managed to score her autograph and a hug, which was like hugging an energetically super-charged sparrow.

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Good golly, Miss Molly!

I delivered a seminar about the duality of being a lifelong patient, and how that informs my work as a spiritual carer. Thanks Matt Glover for writing such lovely things about me! We’re going to miss you terribly as our EO, but our incoming EO Nalissa is also seriously fabulous.

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Thanks Matty G!

We were also lucky enough to have dementia advocate Christine Bryden speak. Her address was incredibly affecting, and she received a standing ovation. ABC broadcaster Rachael Kohn spoke about Spirituality in the 21st Century, and on the first afternoon, we had organised a death cafe to be facilitated by Dr. Ralph McConaghy who heads up the palliative care service at the Wesley Hospital in Brisbane (I think I’m just a little bit in love with him).

Afterwards, I was invited to be a part of a three person panel which saw some strong opinions, and me say the word ‘hell’ in front of 200 odd chaplains, pastoral carers and priests. I may have also talked about the importance of sex when a person is dying (I swear I didn’t start it). After the panel, I was approached by the etheral Rachael Kohn, who is this curly haired Canadian goddess, and she asked to interview me for her Radio National program ‘The Spirit of Things’. Of course I said yes, and the following morning, we sat in her hotel room and talked. Here’s the interview, and a few photos from the conference. It was exciting, exhausting, hilarious, illuminating and everything in between. I met some incredible people, and connected with some old friends.

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Queenslandahhhhhh!!!!
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Getting through conference was mind bending. My hardcore half a nip of whiskey on the first night had me all like #CHAPLAINSGONEWILD
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Being the teetotaller I am, I was DJ for the party post-dinner. I may not drink, but I was DRUNK ON POWER.

The day after conference, I drove back to Brisbane where I spoke at International Nurses Day at the P.A. I spoke about how the role of nursing has changed in my lifetime, and how nurses have impacted my life (where do I even start with that?). I threw in some scandalous interesting stories from when I was growing up, managed to lose four pages of my notes, but did well enough to remember most of what I wanted to say. After I spoke, I was one of two judges for the nurses talent quest, and I have to say HOLY SHIT – do we have some gifted nurses at the P.A (I’m not even being biased). Singers, Johnny Cash tribute bands, fiddle players, and the rest.

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I had initially titled my talk ‘HOW NURSES ARE FUCKING RAD’ but was politely asked to drop the profanity 🙂
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Nurse holding my hand between recovery and heading back to theatre when I had my transplant #somuchlove

I promptly went home, and fell into a coma.

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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The bitter taste of defeat and failure

One year on, and three years drug free. Just quietly, I’m feeling quite proud. And strong – SO strong.

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Always expect the unexpected. Be prepared like a girl scout without the rules (but with teh cookies). That’s always been one of my life’s mottos. After taking my last ever dose of opiate antagonist therapy last Friday, I was relieved when I only had some minor restless limbs when I turned in for bed that evening. I had been on the lowest dose possible, so I couldn’t have predicted what was going to happen next. On Saturday night, I drove up the coast for a prawn fest and I lay awake all night. I only had a couple of ‘punches’, in that my arms went a little haywire and my legs were sore, but it was nothing I couldn’t handle.

I’ve always adhered to the adage that our hell is here on earth, and on Sunday night, that was very much the case. My legs were kicking uncontrollably, my…

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