Category: organ donation

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.

IMG_2189

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.

IMG_2301IMG_2174IMG_2157

IMG_2146

IMG_2144IMG_2139IMG_2138

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.

IMG_0623

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.

IMG_0718
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.

fullsizeoutput_17f1
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.

IMG_1372
Queenslandahhhhhh!!!!
IMG_0659
Getting through conference was mind bending. My hardcore half a nip of whiskey on the first night had me all like #CHAPLAINSGONEWILD
IMG_0772
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.

IMG_0839
I had initially titled my talk ‘HOW NURSES ARE FUCKING RAD’ but was politely asked to drop the profanity 🙂
IMG_0841
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.

20120503-225342.jpg

Ch-Ch-Ch-Chaaaaaanges

Someone I’ve known just shy of twenty years said something to me back in September, and I’ve been ruminating over it as I approach my fortieth birthday. We were talking about our inner voice. You know, about what we say to our selves in the quiet of our hearts; the things we think, but keep to ourselves – that internal existential screaming (I know I’m not the only one). I’ve always had a contentious relationship with this person for various reasons, but we’re older now. Time has passed and there are children, and far bigger things than just us. She said she hadn’t changed much at all – that she still just blurts what comes out of her mouth without too much thought.

‘I have no inner voice,’ she laughed. ‘You never had one, but you’ve changed,’ she said. ‘You’re not like you were at all.’

‘I should hope not,’ I replied, smiling as I bounced her beautifully chubby baby in my lap.

I laughed it off with some friends later, although a couple of them were a little affronted on my behalf. Being offended was the last thing I felt. For me, it was like the linchpin of this year, because it anchored and grounded me in both spirit and purpose. I’m really fucking relieved I’m not the same person I was eighteen years ago, although …

scan-3
No pants. So nothing has really changed.
22564_309304487233_6226620_n
Two Frenchman. Now, that’s not trite.
19164_220790877233_6847178_n
Who doesn’t wear a string bikini and stilettos to a party?

From the outside, I’m so far removed from ‘who’ I was, or what I embodied. Certainly, I’m not as loud or as shut the fuck up ready to roll at any given moment, as is evidenced by the photos above. I was never one to take no for an answer, I would introspect and rage in equal measure, I’d rarely walk away from a situation without a fight, and if someone said I couldn’t do something, I damn well did it. It was never about ‘winning’ – it was about being heard. I learned from a very young age that growing up with a terminal illness like Cystic Fibrosis, I was either going to sink or swim.

I’m talking about what us old skool CFer’s call the ‘good old days’, when we had no mother to keep us safe at night in hospital when things like IV’s and naso-gastric tubes failed. Where any old doctor could waltz in in the middle of the night and have you held down with excessive force as they tried to access a vein. It was brutal. Parents couldn’t just decide to stay the night beside their child because it was never an option. It’s only very recently made sense that my first visual memories are of steel bars, as if looking through a jail cell. That’s how hospital cots were designed, but that’s a story for another time. So sink or swim, I found my voice very early and was quite the ham (conservative statement).

You see, the voice I was born with – my literal voice – was a gift, a weapon and my currency. It was how I steered myself in the world and was often my greatest ally. It was always with me. It didn’t matter where I was – I could use it, and use it I did. I could sing delicately and brutally, create incredible sounds and boom over all and sundry. I had twenty-one years with that voice, and when I woke up after my transplant, it was laying paralysed across my larynx in a state of eternal dysphonia.

I’d lost my gift, my weapon, my currency, and what I believed was my essence. Who was this squeaky woman so afraid to speak in case the wrong noise slipped out? Over the years I’ve buttressed myself against the world without it, and while I could say it’s taken me time to realise that my fractured voice was just a metaphor for life, that seems so trite and platitudinous, because we are all so much bigger than that.

I still sing every day. Some days I squeak like a pre-pubescent boy, and some days I can belt out a sound akin to a finalist on The Voice for very brief periods of time. I’ve learned to embrace the mystery, because singing with one vocal cord can be tricky.

Every year, my best friend and I go and see Deva Premal, Miten and Manose, where we sing, chant, laugh, cry, hold hands with people we don’t know, and connect. In February, I joined Deva Premal and a room full of strangers on a three day chanting retreat – all of whom I ended up praying with, hugging, eating with, and singing to. I re-engaged with my voice and felt connected to something tangible from what actually is a lifetime ago. On the first afternoon, my mind was filled with picture perfect captures of my pre-transplant life. It was like a Vipassana of my voice, where every moment played on a loop in my head.

I remembered competing and winning eisteddfods for primary school choir and vocal group, winning drama prizes in high school, and when I sang in the school musicals. The fun I had, the friends I made and still have, and the music director of one of Brisbane’s best GPS boys’ schools stopping me mid-song to ask if I’d sing in his jazz band. His well known jazz band, at that. I wish I could have, but in senior year, I was in survival mode with study and sickness and death.

1544_44657472233_9768_n
Not-so-sweet 16, and a semi-formal. Semi, indeed.
img_4732
Sixteen and sun kissed.

I thought about when I was offered a coveted place in the acting strand straight after my audition for my drama degree, but was in full possession of the knowledge that my health was declining and was never going to get better. The acting strand was voice and movement oriented, and the physicality it would have demanded in such a small collective of students meant that I would have needed to not be sick. I didn’t want to let anyone down, so I politely declined and instead enrolled in the ‘open’ strand with most of the other drama students. I declined not because I couldn’t do it, but because I made a conscious choice not to start something I couldn’t finish. Did I ever resent my illness? Did I ever look at that elite group of actors and think ‘that could have been me?’ Of course I did, but I’ve never had a case of terminal pissed-off ness. I focused on what I could do, instead of what I couldn’t. In some strange, yet pernicious way, I turned my attention to more academic pursuits and did very well.

So while I meditated and seemingly went back in time on the first day of the retreat, I felt a towering shift where I was able to finally let go of my voice. I cried, my body moving like a metronome, ticking from side to side, and for the next two days, I was immersed in a space of love, support and devotion (and vegan food – nothing’s perfect, after all).

Was this a broken piece of me on it’s way to healing? It was not. As I’ve already alluded to, by the time my left vocal cord was paralysed, my life as I had known it was already over, and another that had been waiting for me was busy being born. A person is not and cannot ever be the same when they’ve experienced something as profound as a transplant. It’s like a one-sided exchange and a permanent declaration of gratitude. A debt you can never repay, except in compassionate actions, kindness and love.

I used to think that there was a redundant, unloveable, unusable piece of me that would be strung across my throat forever, taunting me. Like a silent bell that won’t peal when it’s rung. I now find comfort that there’s a fleshy piece of the ‘old’ me that sits there dead, making me brittle of voice. When I speak (or squeak), I have to think about how I’m going to hold my head so the sound comes out. A lot of people think I’m down with the lurgy, so that’s something that’s never changed – it’s just not my lungs anymore, thankfully.

Was losing my voice a blessing? Oh, yes. But more than anything, it was a powerful lesson in economy and expansion. Economy of words, sound, emotion, and so many other things. Expansion in compassion, empathy, love, self-awareness, and purpose.

Most of my fellow chanters said they’d be back next year, but I knew that I wouldn’t be. I walked into that hall with no expectations, but left with what I needed and more. Three days of memory tripping, chanting and emerging into the quiet heart of my mind, and I was full. This year has been one hell of a lesson – an awakening, if you will. I perhaps Some people have called it a fucked year, but with what I’ve learned about myself and other humans – the good and not so good – I wouldn’t swap that for anything. Three years drug-free, one year off opiate-antagonist therapy, and I am FLYING.

exactly

Speaking my truth (and a whole lot of fact)

In May, I was invited to speak at the P.A’s clinical ethics forum for National Palliative Care week. This year’s theme was ‘Living Well with Chronic Illness’, and before the forum, I met with three lovely ladies to mull over what I might like to discuss in my talk (sex? It was a unanimous YES). I was lucky enough to meet Susan, the customer support officer from Metro South Palliative Care, Clinical Ethics Coordinator Jenny, and Letecia, a Clinical Nurse Consultant from the palliative care team at the P.A. All compassionate, funny and fiercely intelligent women.

I was humbled that they would ask me to share my experiences as both a lifelong patient and now, as a caregiver. I’ve been contemplating whether to share it on my blog or not, but have bitten the bullet, so here is an ever so slightly edited version of my talk. I’ve included a few of the photos I used in my presentation (and a couple that I didn’t) so you have something to look at due to the sheer amount of wordage.

IMG_0799

What would be the last thing you’d want to think about when you’re dying? For me, it’s hideous practicalities like sorting out power of attorney and advance healthcare directives, hunting for my passwords so my family can manage my social media accounts or writing a will. I mean, who really wants to do any of that stuff when they’re dying?

What about living well? And not just living well, but dying well while we’re alive? There’s nothing to stop death, and everything to guarantee it, yet dying is often put in the too hard basket, but it’s really the most human thing we can ever do, alongside of birth. Is it crucial that we live and die well? I think so, both as a lifelong patient and now as a caregiver with the sick and dying.

Like cancer, the term ‘palliative care’ can immediately engender fear. I’ve spoken with patients and friends whose doctors have brought up the option of palliative care, and they so often they believe that it’s far too early to even think about it. Many people think palliative care is introduced in the last weeks and days of life, and while that can be the case, it’s possible to live for months and even years with palliative care. So back to living well when you’re dying. What does that mean? For me, the linchpin of living well, and living a full life has been finding and creating meaning and purpose. Over the years I’ve been able to do that by writing, exploring my spirituality, and now being a caregiver in the death trade as a death midwife and pastoral carer.

When I was growing up, and not until too long ago, palliative care and Cystic Fibrosis didn’t coexist in the same lexicon. Now, patients are referred far earlier down the line so that they don’t have to waste away in a hospital bed without the chance of living their best lives. No one talked to me about dying, but from the day I went on the transplant list in 1998, I knew there was a reasonable chance that I’d die waiting.

I still find it confounding even today that no one from my medical team talked to me about dying – not even the psychiatrist I was seeing for depression. I think it was assumed that because I was under the care of a psychiatrist, no one needed to ask about how I was faring emotionally. But the problem was that I wasn’t really discussing my impending death with my psychiatrist either, and yet there I was, suicidal because my life has ceased to be, and in a state of existence. I’d had to defer university, and for someone who was very focused on academic pursuits, that was tough to take. During the past year, I’d had to cut down on my study, and was unable to do any voice or movement studies because I just didn’t have the energy or the breath. With the physicality of acting and singing, I found it hard to reconcile that I had to focus more on the theory side of things, and then nothing at all.

I remember getting a call from my transplant physician Scott Bell the day I was called up for transplant – that is, before a donor had been found – and I remember his words verbatim. Scott knew I was at the end of the road and that finding a suitable donor was highly unlikely. He said, ‘I’m so sorry. I’m sorry we haven’t been able to get you lungs. I’m sorry we can’t save you,’ to which I said, ‘that’s okay.’ I knew he had done his best and I appreciated his candour – something that had been so sorely lacking with the team who were looking after me at the Mater. That Scott had shared his humanness with me, as opposed to just being my doctor, meant a lot. After Scott’s apology, I got the call that there were donor lungs available just before midnight. Had it not happened to me, I would never have believed it.

IMG_2024
This is Scott telling me ‘it’s not going to be easy’. I was okay with that.

The people who did talk about dying and death were my nurses. There was this no BS thing between us, and I could talk and make inappropriate jokes about my own death to my hearts’ content. But no one ever came to talk to me about dying, and for me that was disappointing because what was unfolding was really quite remarkable. And so it was something I had to do on my own. Not long after I went on the transplant list, I planned my funeral. Not a common thing for a 21-year old to do, but it had been rolling around my head since I was a little girl. For me, getting that out of the way so I could focus on living was essential in getting on with life while I still had it. It was without a doubt, a time fraught with much sadness. All of my friends were cruising along with their lives – going to uni, travelling and living full lives – and yet here I was, seemingly stuck. Life on hold, mostly living in hospital with a very poor prognosis.

As a young girl, I was acutely aware of the difference between being treated as a patient and being treated as a human being. I had always wanted to be treated as a person who had something to contribute to society, not just as a dis-ease. When you’re a body in a bed, your sense of identity is often stripped so far back that you don’t recognise yourself, and I found that if you can’t recognise yourself, other people are going to have trouble, too.

One day at home alone, I remember looking at my naked body in the mirror as I edged towards what I call my ‘acute dying phase’, and I began to cry. I went blue from crying. I was literally fading away. My breasts had shrunk and I looked like a little girl. I knew that there were big changes happening in my body, but over the course of my life, they’d been cumulative. This was more like a free fall, and as I took the time to really digest who and what I had become, the Bruce Springsteen song ‘Streets of Philadelphia’ began playing in head. I’m sure many terminally ill people would identify with the lyrics.

Now even though I was dying, I was still very much alive.

22564_309304487233_6226620_n
Two Frenchmen. I was 21 and end stage. Don’t judge me.

I adapted to dying, and adapted well. I had after all, spent my entire life adapting to every possible circumstance where most were out of my control. I knew full well I was end stage, but I was very calm and accepting about that, which still surprises me. I think it was a combination of being bone weary after having suffered for so long, and the pain was so immense because I wasn’t receiving adequate pain relief. I am many things, but I am not brave. I’m actually quite averse to being told that I’m brave because I honestly don’t feel as though I am. I’m just a person who has had a few detours around what is considered a ‘normal’ life, and I’ve been dealt more death – or ‘non-life’ cards – than most people.

The militarisation of illness, dying and death is something I’ve always had trouble with. I’ll be honest and say that I take umbrage when a person dies and people say they ‘lost the fight’ or the ‘battle’. I can see how people can equate illness with ‘winning’ or ‘war’, but war imagery can be really quite harmful to the person and their family. It’s like they’ve made the choice to give up or surrender and I feel that it shifts blame onto the person because they weren’t strong enough or they didn’t try hard enough.

As a writer, language matters a great deal to me, so when we use terms like treatment ‘regimes’, to ‘invade’, ‘attack’ and ‘target the enemy’, this can signify to a person that they need to assemble an army, and when you live with a life limiting condition, you do have an army and an arsenal of sorts, but it can be a frightening prospect that you have no other option but to survive at any cost.

In 2007 when my lung transplant consultant told me that my cancer surgery may very well kill me, my exact words were, ‘why, after 30 years, would I give up now? I’m not just going to let cancer kill me.’ That was nearly nine years ago, and in all honesty, I can’t tell you that if ever I got cancer again or if I went into chronic rejection, that I wouldn’t use warfare terminology because humans are by design, combative creatures, so it’s easy to see why that when our lives are threatened, we move into that space of fight or flight. It can be useful to see an illness as an enemy or an invader, and while I’m not going to go all Susan Sontag on you and lecture you on the metaphorisation of illness, I am a big believer in whatever gets you through, be it meditation, prayer, art therapy, crystals, yoga, visualisation or howling at the moon, then that’s what you should do. I would encourage you to read Sontag’s seminal text ‘AIDS and its metaphors’ and its predecessor ‘Illness as metaphor.’ In fact, just go and read all of Susan Sontag’s books.

So getting back to whatever gets you through. Let your patient go through the motions. Let them feel sad, indifferent, pissed off or devastated. My advice is to be realistic, and to be realistic within the context of how each patient is experiencing their illness, whether that be cancer, CF, motor neurone, MS, AIDS, heart or kidney disease. Use hope, but use it wisely. False hope and positive talk has done equal amounts of harm than it has good, and as both a patient and a caregiver, I find that when I sit with whatever emotions surface, instead of resisting them, it’s going to serve you better if you process these emotions in your own time.

Being with, as opposed to fixing, our existential pain is something we could do a lot better, and besides, people will learn the truth if you’re giving them false hope, and they will be monumentally PISSED. You don’t want to piss off someone who is dying because time is precious, and being happy is paramount. Something I’ve learned, is that positive talk can lead to victim blaming where you’re seen as being pessimistic. Positive action and honest interaction are far more effective than positive talk, and I find the whole ‘Oprah-isation’ of life where the glass always has to be half-full, even if it’s in a million pieces, to be arbitrary and even a little reckless.

A good attitude does not and cannot change circumstance and the universal call to think positively is not a panacea for suffering. In my own lived experience and the shared experience of friends who have CF, I’d much prefer to be realistic. That’s not to say that I’m averse to hope – hope is a huge part of how I’ve come through the other side of illness – but no amount of positive thinking was going to help me as I drowned in my own mucous, and it certainly wasn’t going to help me when I had cancer. For me, acceptance has always played a fundamental part in my own survival. The closer you get to death, the more you understand life, and there’s a propensity to reject unrealistic outcomes. In her book Smile or Die: How Positive Thinking Fooled America and The World’, Barbara Ehrenreich artfully rejects the widely believed notion and justification that cancer is a gift. Just like the pink ribbon for breast cancer, Cystic Fibrosis has been wrapped up and represented over the years with rainbows and roses. Why not a photo of my dead lung?

0-4

I mean, that’s a pretty realistic portrayal of CF. I guess rainbows and roses are more appealing.

As humans, we find it challenging to accept the harshness that is reality, which I like to call the ‘cold crucible of day’. I’ve often said that I’ve been gifted the passage of dying with the work I now do, but never have I said that Cystic Fibrosis or cancer was a gift. Having said that, I would never ‘un-CF’ myself, because having CF has given me a unique lens through which I have looked through all my life, and I wouldn’t be me without it, just like you wouldn’t be you without your experiences.

When I was on the transplant list, I became what I call a ‘moment collector’ where I moved from one moment to the next – almost always with a camera – to record what many people called my ‘battle’ against CF. I was ‘losing’ to my illness, and far before I even knew about the militarisation of illness and death, words like ‘fight’, ‘beat’ and ‘win’ felt quite at odds with what I was actually experiencing and feeling. By collecting these moments, and having a visual record of my life, it helped me feel in control, and when you’re sick or dying you’ll do anything to feel as though you have the reins. Dealing with the actual reality and the need to feel optimistic about a terrible situation was a very fine balance.

When I was on the transplant list, a unique opportunity presented itself. A student in her final year of photography at the Queensland College of Art wanted to document my journey from going on the list initially, through to transplant and/or death. Alicia, who became a dear friend, was also an Intensive Care nurse, so this gave her some clout when the time came to sign waivers and what have you with the Prince Charles Hospital so she could photograph the actual surgery should it happen. So here are a few photos, and just to let you know, there’s one (okay, maybe two) photos of my boobs, but they’re purely medical.

427148_10150559168746339_1868857956_n
BEWBS! And hoses.

 

scan-132330021-e1446196430336
Mum, Sharon and a comatose me.

 

cropped-scan-132340007-4-e1377172056299.jpg
Alan, my favourite ICU nurse.

The day after I was extubated I saw the proofs of my surgery, and this let me really own my entire transplant experience. When you’re in the eye of the storm, there’s so much you don’t get to see or feel, and it’s an experience that is almost impossible to process. These photos helped me to put the pieces of my identity back together and let me really observe who I was before, during and after my transplant, as well as what my family and friends had been through. I’d felt such a disconnect from my body when I was so sick, and it was interesting to see the evolution of my post-transplant body and life.

Photos are so important for a couple of reasons. You might have noticed that when people come into hospital, they like to surround themselves with photos, or maybe that’s not so much the case anymore with mobile phones and social media. But as a pastoral carer, I see it a lot where people bring in photos because it helps them reconnect to what their life – and their identity – was before they were diagnosed or before they had their accident. It helps them grieve for what was and gives people a touchstone for where they’ve been and where they want to be.

If we could change the message that palliative care matters not because we’re dying, but so that we may live better lives, then perhaps that might make people less fearful and more receptive to accessing services earlier in their disease trajectory. For me it wasn’t so much about death when I was dying – it was about living the fullest life I could.

I didn’t really want for much when I was dying from a medicine perspective, but the one thing that was lacking and that most bothered me was choice, and dying how I wanted to die. As far as my doctors were concerned, I was going to die in hospital. Now this was something I had spoken at length to my Mum about. I had seen umpteen friends die horrible deaths in hospital for varied reasons, and some of those memories reached right back into my childhood.

I remember being in a six bed cubicle at the Royal Children’s Hospital, and while we’d be having noisy treatments like physiotherapy or eating meals, there would be children dying around us. My mum remembers curtains being closed around a child’s bed as being the only modicum of privacy that that child and their family were given. Parents would walk out howling at the loss of their son or daughter, and this had an untellable impact on us both as friends of the child, and having the same illness as the child who had just died such an undignified death. To be frank, it was pretty barbaric. Thankfully things changed, and dying has become a more private experience, but we have still have a lot of ground to cover.

So what was my meaning when I was dying? It was really simple. Living my best life. I was 21, so I wanted to do the things my friends were doing. It wasn’t ground breaking, that’s for sure. We’d go to coffee, go to parties, and do other social stuff. I was able to drive for a while, and that was critical to my sense of identity to get out and about. Even if I wasn’t doing what I really wanted to be doing – which for me was going to uni (tragic, I know) – at least I felt as though I was doing something. My quality of life was still pretty good. I was going out with my friends and I was in a relationship. My friends were brilliant. If there were too many stairs at a venue, I’d be bundled up and carried, and I took a bottle of oxygen wherever I went. To be totally honest, I’m surprised I never blew up because of the non-existent smoking regulations back then.

Feelings of low self-worth can be a burden when you’re living with a life limiting condition, and so I wrote. A lot. That was how I created meaning and purpose. It was and still is my bliss, and it’s saved me more times than I can remember. When I’m not writing, I’m reading, researching, plotting, learning from my mistakes and other writer’s successes, trialing ideas and agitating grains of thought until they become something more akin to a pearl; rehearsing scenes in my head, and perfecting the art of observance – all things that suffuse my life with meaning. I’ve been reading Hugh Mackay’s latest book ‘Beyond Belief’ and I’m going to hear him speak tonight. He writes that ‘eventually, we realise that finding meaning and purpose in life to satisfy that desire for control’, and to a point that is true.

But what happens when you go from living well and into survival mode? Transplant is a really odd space to be in – physically, psychologically, emotionally and spiritually.

You’re dying, but you might get a call that will save your life.

That call might save your life, but someone else has died.

Another family is grieving an immense loss.

You’re living with the slug of death, and then you’re presented with the gift of life.

You feel guilty for celebrating that you have lived and the pressure to atone for that is always with you. For me, transplant was an incredibly violent return to life with a prolonged and painful recovery.

So cut to 2006. I’m about to get a little personal, but I’m sure you’re all very open minded. I receive a call from my gynaecologist telling me that my pap smear had returned an abnormal result. There had been minor changes in my cervix, but what she was most concerned about were the changes in my vulva. I was referred to a gynaecological oncologist, and for the next eighteen or so months, we tried to keep cancer at bay with some really horrendous treatments which I needed voluminous amounts of opiates for. I had little to no quality. I had to move back in with my parents, who by the way, are absolutely wonderful, but I found myself in that sick role again. I began to not recognise myself again. I had gone from doing my Masters in creative writing and being a teaching academic to being reliant on others again. I’d had so many years of great health with my lungs, so when you’re diagnosed with something as unusual as vulvar cancer – a cancer mostly seen in older women – it puts you in a very precarious head space.

In November 2007, I underwent a radical vulvectomy, a seven-hour surgery which required extensive skin grafting and an ileostomy. Despite this package deal, I felt quite cheated. The surgery itself went well, but on about day five, things began to go awry. My bowel obstructed and I started having massive seizures which left me in a coma and in danger of having a heart attack.

ICU & Christmas Show 019
Girl, obstructed.

I was ‘between worlds’ and deep into another near death experience. The interesting thing is, even before the surgery, I felt like I was dying because I was suffering and not living well. My quality of life was pretty woeful, and it wasn’t great for a while afterwards either.

Cunt Cancer Coma
Between worlds with my beautiful sister, Nikki.

I’m a hopeful person and have always maintained that things can be worse, but in 2007 when I was lying in a bed with broken lady bits and an ileostomy that exploded like clockwork, I found it near impossible to be chipper. I wasn’t dying, but I felt like I was. In fact, I felt like I had died, and come back to existence. Not life, but existence. Thankfully, there was a psychologist on the gynaecology oncology team who helped me process the dreams or terrors I experienced when I was comatose. They were terrifying, and I couldn’t speak about them to anyone until this lovely lady asked how I was faring post coma, and if there was anything I wanted to talk about. I touched upon my new and overwhelming fear of dying, and that was when I was able to tell her that the terrors felt real – as though I had been moved from my body to these other terrifying places where I was tortured physically and mentally. Did I have post-traumatic stress after that near death experience, or has my entire life been a case of non-stop PTSD? I tend to identify with the latter.

It’s no secret that we find ourselves in a death phobic society. I’m sure you’re well aware of the Kubler-Ross five stages of grief model. It’s a model that never sat well with me and up until recently, I couldn’t put my finger on why, but in February, I went to hear Stephen Jenkinson speak. Stephen is from Orphan Wisdom School in Canada, and he clarified what I’d been trying to articulate for so long, and that is that the Kubler-Ross model is better suited to trauma, or more specifically, PTSD. Dying is not just a psychological event, as Kubler-Ross stated it to be – it’s physical, psychological, spiritual, communal and a bunch of other things that as a death phobic society, we have trouble grappling with. I never experienced the Kubler-Ross trajectory of grief. I’d lived my entire life accepting that I would in all likelihood, die. There was no denial, anger or bargaining when it came to my own situation. Yes, there was depression, but I think after over seventy deaths, you become a little desensitised, and that feeds into survivor’s guilt where you ask questions like, ‘have I cried enough, grieved long enough or been sad enough?’

So what will I do differently when – not if, but when – I enter my final stages of life. I’d be referred to palliative care as early as possible. Diagnosis is an ideal time to be linked with palliative care for emotional and spiritual support or what we call the bio-psycho-social model of care. That consistent monitoring helps one remain engaged in life, with meaning and purpose, and that is living well. In 1998, I wasn’t afraid of dying – I was more afraid of not living while I was still alive. I had reached the end of not only my life, but the end of myself as a human being. In the twentieth century, dying became very medicalised, and we’ve been living in a death phobic society since the civil war and the birth of the funeral industry. But that’s another talk entirely.

The invisibility of illness and the art of comparison is something I’ve always dealt with being chronically ill. Illness comes with its own judgments and perceptions, and I wrote the following a couple of years ago when I was sick:

It’s not chemotherapy, but … it’s crushing exhaustion, aching bones, rigors, a barely-there appetite, heart palpitations, diarrhea, nausea, seizing muscles and bone aching lethargy. Most mornings it’s a struggle to even sit up in bed, mix my antibiotics and push them through my CV line. ‘Antibiotics?’ I hear you say. Yes – antibiotics. Whenever I get a lung infection and have to have a very obvious CV line indelicately threaded into my jugular and stitched onto my neck, people look at me and always assume the worst. I’ve heard people whisper, ‘oh, she must be on chemo,’ or ‘She must be on chemo where she doesn’t lose her hair – how wonderful!’, and worst of all, ‘I wonder how long she has left?’

For the record, I don’t have cancer – not this year, anyway – but when people learn that I’m on antibiotics as opposed to chemotherapy, they immediately express their relief and tell me that they’re glad it’s ‘nothing too serious’. I guess it’s not ‘too serious’ until the antibiotics stop working, I get pneumonia, end up on a ventilator and die. I’ve seen it happen time and again with my friends.

Transplant isn’t a cure for Cystic Fibrosis. What I’m doing is essentially buying time. I’ve always been hyper aware of that and as I mentioned, I still occasionally get sick which comes at a cost every time. A couple of years ago when I had a lung infection, I needed to have blood tests done twice a week to ensure that my Tobramycin level wasn’t too high. High levels of this drug can send me into kidney and liver failure and affect my hearing to the point of going permanently deaf. In fact, before my transplant, my levels were so high, I was falling over from vertigo and tinnitus – and that’s not before the nausea, runs and rashes. Thank goodness for home delivered groceries and supportive family, because from the moment I start treatment, up until three weeks after I’ve finished, I fail to experience a solid bowel motion, am on fentanyl for pleurisy, have violent sweats and the vomits. I know – it’s all very glamorous.

Another thing that can make me nauseated is the proliferation of inspiration porn. I honestly do not believe that I am stronger for having had CF or cancer.

IMG_8660
Disclaimer: Moments like these do not necessarily make me stronger.

I’m more resilient than I might have been, and all cried out of tears, but not necessarily stronger – and certainly not a victim. I only ever came close to feeling like a victim when my friends died. I could get through the treatments, the pain, the surgeries and whatever else CF threw my way, but I felt so totally cheated when a friend died. This, coupled with survivor’s guilt has had a profound effect on most aspects of my life. I live in a community where I coexist with victimology and survivorship, so I just want to make mention of survivor’s guilt for a moment.

I think it’s crucial to keep in mind that any patient under your care may have friends who are dying from the same illness they have. This has a profound emotional effect on the psychological welfare of the survivors, and for me, it always called into question not ‘why me?’ but ‘why not me?’. There was also the question of when. When am I going to die, and this is where what you do counts. It doesn’t take much to make a positive impact on someone’s day. A gentle touch, a knowing glance – even an unknowing glance – or a few simple words like ‘I’m sorry about your pain – is there anything I can do?’ can make the difference between a terrible day and one that’s bearable.

I like to think that I would have still found my authentic self had I not grown up with a life limiting illness and a life punctuated by death. I think that because of my childhood, there was a part of me that felt as though I needed to wear a mask of happiness; to pretend I was okay when I was anything but, but I also felt that I was still authentically me. Growing up, I was a firecracker; fierce, loud and almost menacing with my lust for life (yet very polite). Once I had my transplant, that fierceness was taken away to the lab with my dead lungs in a bucket after I literally lost my voice when my left vocal cord was paralysed after being intubated. Losing my voice had an untellable impact on me and my identity. I would ask myself: who is this new person?

So there’s lots of questions in life and in death and questioning has saved my life more than once, so don’t be surprised or offended by being questioned. I know that you have a million and one things going on, but if you don’t listen, you’ll never get the full story which means you’ll never get the whole experience. I’ll give you a personal anecdote about listening and asking questions.

When I was ten, I wasn’t being compliant with my medication and other treatments because I wanted to be like my friends. I was called a junkie when I took my tablets at school, so I stopped taking them. I hated physiotherapy and would always try and get out of it. I ended up being referred to a social worker, and my non-compliance was mistaken for being mentally ill. I was also grieving the death of a very close friend. My parents were hoodwinked into thinking I was mentally unstable, and I was admitted to the notorious Child and Family Therapy Unit at the Royal Children’s Hospital, which is just a fancy name for a psych ward.

I was an inpatient for just short of two weeks before my father broke me out, but for the interim, I was under 24-hour observation where I couldn’t close the door to my room or have a shower alone because I was deemed a suicide risk. I’m going to reiterate here that I was ten years old. I could only see my family on certain days at certain hours, and we had to be supervised. Everything I did was monitored, and while I’m sure the social worker who was dealing with me thought she was doing the right thing, had they taken the time to listen, instead of letting my parents answer on my behalf and putting words into their mouths, the outcome would have been very different. Did it change my behaviour? No. And the reason why, is because I still wanted to be a normal kid.

Relationships and trust are essential parts of patient care and listening can be an art form. Care is about more than treatments and being proficient with procedural tasks. Talented with a scalpel? Great. Not so good at taking on what your patient is trying to tell you? Not so good. Care is about relationships and advocacy and about how a practitioner – any practitioner – cares for their patient in a broader context. Last year when I did my first unit of Clinical Pastoral Education here at the P.A, I learned how to listen with my ears, heart and every fibre of my being thanks to the expert stewardship of Noela Fanshawe.

Speaking of experts, I’ve been very fortunate to have had the most amazing nursing care over the years, but nursing has changed radically over my lifetime. Nurses today have a far more complex role than their predecessors, and they make critical decisions that many years ago, would have been made by doctors. I’ve spoken at length with nursing professionals who feel there’s been some erosion within their role. Simply put, nurses are busier than ever, and in a traditional hospital setting, there is less time spent by the bedside and that’s where social workers and pastoral carers have helped ease the burden felt by nurses in the past. For the most part, they’re overwrought, underpaid and overworked. It is said that it takes a village to raise a child, but it also takes a village to look after our dying and their families, and that’s where all of you come in.

Over the last six years, I’ve found myself in the somewhat unusual position of being in the care industry as a death midwife and pastoral carer, and what better compliments death, than sex? Eros and Thanatos. They seem to have close connection – a relationship, if you will – and after searching for peer reviewed articles about sex and dying, I have to say it was slim pickings. I also went through all of my death books – and I have a veritable library – and it was disappointing that only a few mentioned sex and the dying person, because on a personal note, I wasn’t willing to forfeit sex when I was sick. Sex was an intrinsic part of my humanness and my identity as a woman. It’s well researched that sex helps in facilitating emotional connection, and that it can be a spiritual practice.

It’s not just the young and physically well people whose sexuality is an important, and even essential, part of their lives. I mean it goes without saying that the sexual needs of people with physical or intellectual disabilities are largely ignored. There was a great episode of Insight on SBS recently that highlighted how crucial sexuality is for people with disabilities. It has a myriad of unexpected health benefits. For one gentleman, his pain levels and violent tremors were more settled in the two to three days after he had had sex.

For me, it helped clear my lungs when physiotherapy became too painful; it elevated my mood and brought my partner and I closer together emotionally. My partner at the time also recognised this – I mean we were only twenty one, so not too wise – but we both knew that the benefits outweighed any risk. I mean, if I was going to die from going into respiratory arrest while having an orgasm – what a way to go. It was also quite amusing turning up to the hospital to re-access my port because the needle had mysteriously ‘popped out’.  On a more serious note, the bond I’d created with my partner provided a beautiful and playful space where I could forget about being sick for a while.

Our sexuality is such an inherent and natural part of being human, but quite stigmatised. I mean, who would even want to think about sex when their life is under threat? ME. But that’s just the thing – because a person is sick, disabled or dying doesn’t mean that they’re any less of a sexual being.

As a pastoral carer, if a patient broached how their illness was impacting their sexuality, I’d talk very openly, guided by what my patient is sharing with me, and I’d possibly make a referral to a social worker or psychologist, and perhaps they could refer to a sexologist.

Parker J. Palmer wrote that, ‘The human soul doesn’t want to be advised or fixed or saved. It simply wants to be witnessed – to be seen, heard and companioned exactly as it is.’

We often forget about the private lives of patients because we’re so focused on their medical care or treatment plan, even if it is palliative. Michael Rothenburg, an American psychotherapist, sexologist and hospice worker, wrote his PhD called Sex, death and dying: an examination of sexuality and terminal illness among hospice workers, palliative care professionals, terminally ill patients and their family caregivers, and something I gleaned from the basis of this study (the basis of it, not the study itself), is that palliative care professionals are traditionally responsible for tending to the physical, spiritual and emotional needs of patients and their families, but patients sexual concerns aren’t on their radar, and that’s a combination of ignorance and fear. When sexuality is broached,  we need to cleave open that dialogue and engage with our patients. Also, don’t be naïve and think that your patient’s aren’t having sex in hospital, because they are. From personal experience, they will find a way.

Being in that ‘sick role’ can be quite dehumanising, and that’s something that I had to manage, which was compounded by the constant grief of my friends dying. I know I’m repeating myself here, but I didn’t fear death – what I did fear was the loss of my independence. At the end, I was bed bound and couldn’t shower without assistance, but by far the most demoralising thing was that I couldn’t walk, so that meant being pushed around in a wheelchair which made me feel controlled and somewhat under lock and key.

Losing my ability to move was the final insult, and still to this day, I am loath to get into a wheelchair. These kinds of changes – the loss of independence and autonomy – require a great deal of social and emotional adjustment. Your pride is bruised, and by the time I was too sick to go out with my friends, I was lucky that they brought the party to me. The support I had from my friends was incredible. Not to militarise my experience, but I did have a sizable army of love and support.

As a society, and now with the proliferation of social media, we thrive on life and the pursuit of happiness. We celebrate births, baptisms and birthdays, but we rarely celebrate what is for me, one of our greatest journeys – death. We’re taught from a young age about sex and the dangers of drugs – which if you think about it, are both closely connected to death – and we’re given lessons in ‘life skills’, but because we’re never educated about dying and death, it comes as no surprise that we’re so averse to talking about it.

Now some of you might have heard of ‘Driving Miss Norma’. Norma is a lady 90 years young who was diagnosed with uterine cancer shortly after her husband died. Instead of seeking the usual medical options like surgery and chemotherapy, she chose to eschew all treatment and is currently travelling around the U.S with her family and their poodle. She literally said to her doctor, ‘I’m 90 years old. I’m hitting the road’, to which her he said, ‘Right on’. Her doctor acknowledged that her quality of life with treatment would be poor. Norma is sharp as a tack, not in any pain, and her story has made headlines around the world as she lives it up driving speedboats, hot air ballooning, and drinking craft beer. I have great respect and admiration for her choice to live – truly live – while she’s dying, and I feel the same way about her doctor for supporting her decision.

Dying and death have never been so medicalised, and I fear that this has made us even more death phobic. We have cutting edge technology like never before to pull people back from the edge of death, but because death is so often seen as a failure in medicine, health professionals can become obsessed about preserving life at any cost. Death is not a failure, but not providing good death care IS. Human beings are not machines and shouldn’t be treated as such. Our physical symptoms are seen as being ‘fixable’, but our emotional and spiritual needs are often an afterthought.

One of my mentors, Dr Michael Barbato, uses the term ‘precious normality’. He writes in his book ‘Caring for the Living and the Dying’ that ‘one of the very sad things about dying, is that the closer someone is to death, the more likely they are to be treated as a patient rather than a person.’ Tests, treatments, and prognoses all contribute to the dehumanisation of a person who is living with a life limiting illness.

So here’s to the things that help me live well – sweet milky tea, books, night swimming, writing, dancing, music, skinny dipping, knee high boots, singing badly, moon gazing, advocating bacon as a food group, good coffee, compassion, friends, family and taking leg selfies on doctor’s desks.

 

 

Where in the world are you, Carmen Sandiego?

Life. It gets in the way. That’s why I haven’t blogged for three months because there’s been a lot going on. For the last month or so, I’ve been down with the lurgy (the flu), but after two courses of antibiotics, probiotics, lots of vitamins, good food and rest, I’m on my way to being back to full steam ahead with my year.

Exciting stuff is happening. I’ve been asked to be on the organising committee for next years Spiritual Care Australia conference which will be on the Gold Coast. As a pastoral carer who identifies as ‘spiritual’ but doesn’t belong to a specific faith group, I was so heartened to be invited. I am yet to make it to a meeting because I’ve been unwell, but I’ll make up for it in the months to come.

I cut my hair off last week. It’d been falling out at a rate of knots (ha), and having had it cut shorter, I seem to have stopped shedding. Just like that. It feels strange to be so short (yeah, I know it’s still long, but it was ridiculously long). I’m feeling … fresher. Yeah, that’s it. Fresher. Younger too, which is interesting considering I’m forty this year. I took this this photo after I rolled out of bed for my hairdresser. I know I’m looking a little grey.

IMG_0614

So, here is what’s been happening with me …

Making: Crocheting my first blanket. There will be crying Nicolas Cage style, fist pumping and gallons of tea. My maternal grandmother who taught me how to crochet when I was a little girl would be chuffed.

giphy

Cooking: Chicken soup and green smoothies.

IMG_0565

Drinking: Tea. Endless cups of tea. And kefir. I cannot get enough kefir with a generous dash of honey and cinnamon.

IMG_4179

Wanting: A cabin in the woods/hinterland.

Looking: At cabin porn (there’s a theme emerging, yes?). Clouds at sunset, too.

Dreaming: About toasting marshmallows on the burn pile at the farm.

Playing: Diabetic Wheel of Fortune.

Deciding: What the fuck to have for dinner.

Craving: Sweet milky tea, liquorice and normal blood glucose levels (which are incompatible with liquorice)

Wishing: I was living in northern NSW. I feel between worlds. Or like I need a bridging visa or something.

IMG_1884

Pissed: That I caught the flu and it’s still affecting me a month later … Get the fucking fluvax, people.

IMG_0603

Enjoying: My growing collection of minerals. Or crystals, if you want to call them that.

IMG_9909

Waiting: On more words to come. I know they’re there.

Liking: The unfurling of cooler climes. It was a long, hot summer.

Wondering: If I will ever get this novel finished … #yesiwill

Loving: My new balcony chairs. They are epically comfy.

Considering: Spinning wool, falconry and starting my own religion. The latter would be far more lucrative.

Reading: ‘Norwegian Wood’ by Lars Mytting, ‘Gathering Moss’ by Robin Wall Kimmerer; ‘Konmari’ by Maree Kondo; ‘A Ted Hughes Bestiary’ and ‘Hildegard of Bingen’s Medicine’ by Doctors Strehlow and Hertzka.

IMG_7077

Buying: Nothing. I’m Konmari-ing the fuck out of my life. If it doesn’t bring me joy, it goes to charity.

Watching: I just watched ‘Dear Zachary’ and it made me want to cry forever and ever. It’s the most powerful film I’ve seen for some time and will leave you reeling (and needing therapy).

Hoping: That my friends Andrew* and Chief get donor lungs soon. They both have CF and  have had way too many false alarms which is cruel, disheartening and emotionally exhausting. IT’S A GOER FOR CHIEF ON THE SIXTH CALL UP! He’s doing *incredibly* well 🙂

Pondering: How amazing life is being clean. I never thought I could feel this happy. Seriously – have I EVER felt this way? Halcyon days 🙂

Marvelling: At how music makes me feel ALL THE THINGS.

Cringing: That my Jeep needs a new gearbox. Oh, the horror.

Needing: A capsule wardrobe.

Puzzled: That I don’t ever drink coffee in winter.

Questioning: Why so many crap writers get published. I guess mediocrity is on trend.

Smelling: Not much. Since having the flu, my sinuses have been blocked, but today my olfactory senses happily returned and oh! The smell of toast, freshly laundered sheets and chai simmering on the hob – glorious.

Following: My gut. And Marie Kondo. She’s rad.

Wearing: Mecca lip balm. I cannot get enough on my mouth.

Noticing: That I really need to clean my windows.

Knowing: My purpose.

Thinking: I have SO much to do.

Seeing: An overabundance of cranes across the city. All very phallic.

Believing: In fairies and the little people we can’t always see.

Admiring: Anyone who lives with a poo bag.

Believing: In karma. Because I have to.

Sorting: Through my possessions and giving a lot of stuff away. Liberating much?

Getting: Organised to launch a big community project that I can’t tell you about. It is super exciting and slightly terrifying knowing that a friend and I are putting ourselves on the line for what we feel is for the greater good.

Gathering: Resources and support for said project.

Cultivating: Kindness, candida (sexy, right? Thanks antibiotics!), and garden ideas.

Bookmarking: Where do I start? Psychedelics in dying, extreme knitting, cob houses and the small house movement, India, birds of prey & falconry, granny squares, aromatherapy, epigenetics.

Disliking: Where my neighbourhood is heading. Think big corporates moving in, mass gentrification and hideous high-rises that hopefully no one will want to buy. I foresee a glut.

Coveting: A spell that makes me write 10,000 words a day, knowing full well that no such thing exists. The only way is ass glue and a warm teapot within reach.

Opening: Bottles of kefir like they’re going out of fashion.

Giggling: At finding feathers at the most serendipitous of times. My mantra of ‘look up, look down’ has been serving me well.

Feeling: Ready to replant my garden with the help of Mum’s green thumbs.

Snacking: I wish it was medicinal liquorice, but it’s raw veggies with cottage cheese. Don’t knock it ’til you’ve tried it.

Helping: Shit stir the big developers who are trying to ruin my community and create change by lobbying, petitioning, opposing etc.

Hearing: Fleet Foxes and the noble chatter of crows.

Trying: To spend more time offline and in nature.

offline-is-the-new-luxury

(image from https://nostalgichobo.wordpress.com)

Thanks to Pip at Meet Me at Mikes for such a cool list 🙂

*Sadly Andy died a few months after I wrote this. He will be eternally missed.