Category: Hospice Care

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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I’m going to India!

So how’s 2016 treating you so far? I’m deliriously happy to report that mine has begun like no other. Strange things are happening to my body and I’m rising earlier than ever (think 4-5.30am). I’m off the valium I was taking for my restless legs, and I think what has happened is that my body clock has done a complete one-eighty since I’ve been off the suboxone.

Being awake and present in the morning is such a gift, and while it’s something I’m still getting used to, it’s something I want to get used to. Dawn and dusk are the best parts of the day, and I’m getting so much done. I’m also suitably tired enough to collapse into bed only to go straight to sleep early in the evening.

I was to go to yoga with my friend Natty D. this morning, but alas, I could not find my yoga pants, so I’m in the process of turning my wardrobe inside out and donating a whole lot of clothes to charity. For me right now, less is more – unless it’s tea.

Speaking of tea, I caught up with my beautiful Bec yesterday (I have two beautiful Bec’s in my life – talk about being blessed), where we shared too much good food and did a gift swap. We’re both Capricorns, so if you’re into astrology, that needs no explanation. She’s part of my tribe – a ‘soul sista’, if you will. We giggle a lot and have debaucherous conversations. She has been one of my biggest and brightest supporters and I love her HARD for her open heart and willingness to cry with joy.

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She’s also obsessed about India, is a full time sari wearer, and with her husband Alex, has just spent close to a month in their beloved India. I was thoroughly spoilt at lunch with a bag of Chai Marsala from the world famous Abraham’s Spice Garden in Periyar. I’ve been having rabid fantasies about this chai mix ever since Alex made me a brew last year. Along with some black jasmine oil (which apparently smells different on everyone, so it should be interesting to see how it smells on my salty skin) and some loose green tea from Mumbai that came in a beautifully carved wooden box with brass elephants, I was feeling a tad emotional.

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I have a few sacred places that I visit – the farm, Barcy, Carmel-By-The-Sea and Byron Bay (even since it’s been heinously gentrified), but India is a land I’ve wanted to visit ever since I can remember.

Have you ever had a place you’ve never been to pull on your soul? Like really pull on your soul? Well, for me, that’s India.

I can hear the call of the Ganges plunging into the Bay of Bengal, the spice plantations, the temples and its people. I have some stunning books on India I reflect on often, and a couple of years ago I wrote ‘India. I weep because it is there and I am not. And I weep because I may never get there.’

So what’s holding me back? I’ve never had any luck with travel insurance, and getting sick in a developing country with transplanted lungs would not be ideal.

But what is life if you don’t get to experience it? What is life without a little risk?

Until I get to India, I will always be a falling leaf looking for a place to land. And so I am going. I have two years to save, plan and research with my doctors, read and observe and get my body into optimum condition. I’m going to be with Bec and Alex who know the country, have researched hospitals for me (bless) and know where to eat, stay and how to carve out an authentic Indian experience.

We will celebrate Bec’s 50th birthday in Udaipur, and I’m planning on staying for a few weeks. Why go halfway across the world to what I believe is one of my spiritual homes or places of spiritual refuge, when this might be the only chance I get? So it’s off to the Ganges to gently dip my toes into its waters, spend a day watching the funeral pyres, meet some sadhus (holy men), meditate in an ashram for a few days, catch a train to Varanasi, shit myself as is per the authentic Indian experience and go on a two week tour.

I’m well aware that travellers often have a romanticised view of the places they visit, but I know that India isn’t all palaces, ashrams and markets. India is a country of immense poverty and suffering, so my ultimate India experience would be to volunteer at a hospice. I figure it’s the least I can do as a human being.

But back to the farm. Every year, Ben and I give Ganesha a de-web and a rubdown with dubbin. As we worked on Ganesha with lots of love (and dirty jokes), I felt connected and uplifted by this act of ritual and worship. I rubbed his belly with reverence and love, and massaged his hands like I would a fragile human.

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OH, THE REVERENCE …

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Shiny, happy Ganesha!!

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On the third day of the New Year, I drove from the farm up to my folks place at Mooloolaba where I was greeted by this vision.

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I spent a beautiful afternoon wandering around and sucking back veggie juice, then I walked down to the beach to bless my 2016 gratitude stone that I’ve added to my medicine bag. Then I meditated. You get some odd looks when you close your eyes and stay perfectly still for extended periods of time. I just smile at people and get a smile in return – what a gift that is in itself. Spending time alone doesn’t mean I’m lonely. I spent so much time alone as a child in hospital that I’m an ace at it, yet so many see being alone as wasted time. Redundant time.

Why not surround yourself with people?

I like to pose another question – why not surround yourself with YOU? Why not be comfortable in your own presence and hold the space for your body, mind and spirit. For me, the rewards of being alone are constant and ever changing. It restores me back to calm and peace and a surrendering of sorts to the universe and it gives me spiritual sustenance in a Waldenesque kind of way.

The true waste is this – waiting for someone else to fill your cup. Don’t wait. Fill your own cup with your dreams, memories, plans, loves and adventures. No one truly knows what you know about yourself except you, and that is something really special. More special than you may ever realise.

When I’m alone right now, this is the place I’m dreaming of and making plans for – the Bhaktivedanta Hospice in Vrindavan. To say it inspires me is an understatement of gargantuan proportions. Here’s what it’s all about. Also, here’s to conscious dreaming …

Tool of my trade #1 – compassionate listening

I wrote this last year sitting in Adelaide airport just after I’d attended the Spiritual Care Australia conference. The next conference is in Tasmania and I’m sad that I’m missing it, but I have a full calendar to tend to. This post concerns the value of compassionate listening and how we can serve the dying – and the living – better by really being able to hear what people are saying.

After three days of extending my practice as a spiritual carer at the Spiritual Care Australia conference in Adelaide, my vocation really is all about LISTENING. Not listening in a one-dimensional or perfunctory way, but really listening. I like to call it active or compassionate listening.

Tenzin Chodron from Karuna Hospice gave a rousing speech yesterday. The energy in the room was palpable after she lead us through a gentle meditation, and continued to enthral delegates when she spoke about her Buddhist model of spiritual care and about some of her intimate experiences with the dying. I’ve been  lucky enough to have studied under Chodron through Karuna as part of my ‘Spiritual Care with the Dying’ training, and compassionate listening is a skill I honed during my training. During both courses, the group did a listening exercise. We were partnered off where we had to actively listen for ten minutes to our partner without saying a word. No interruptions, no ‘me too’. We then swapped places so that the other person could speak.

It’s amazing how much you can really hear when you’re fully engaged with another person. Once the exercise was over, we discussed the listening activity and how it facilitated true listening, because when we think we’re listening to the person in front of us, are we ever fully engaged with that person and what they are saying? I would have to say that no, we’re not. But we can be.

From then on, whenever I have had to speak with someone as a fully engaged listener, I do a small meditation before I literally step or place myself into the conversation. This is also how I prepare when I’m about to speak with people who are sick or dying, which translates to me that there needs to be a quality of presence.

Clear the mind, set your intention and be almost hyper-attuned. I truly believe that by not listening properly we are failing the sick and dying.

It never ceases to surprise me what comes up for people who are dying. But as with speaking, there needs to be a greater respect for silence. Ofttimes, that is all the person can do until they know what they do want to speak about, or if they want to speak at all.

There are many ways in which we fail the dying. While palliative care nurses, spiritual carers, doctors and other practitioners recognise that suffering affects a person’s spirit, it is common for doctors who are not specialised in palliative care to treat people as just ‘a body in a bed.’ I’ve experienced this first hand, particular when I transitioned to an adult hospital. Everyone – patient or not – is more than the sum of their parts.

In Canberra, there is a much more holistic approach in palliative care medicine. Existential and spiritual suffering often manifests as physical pain, and I have heard stories that once this pain has been addressed, the need for morphine and other pain relief is lessened – particularly at night. This resonates with me because I’ve been to that place and I know that night time is both figuratively and literally the darkest of times where every layer of pain and suffering surfaces and is amplified tenfold. I’d be interested to know if you have had any ‘dark nights of the soul’.

As a spiritual carer, this interests me greatly. What’s more, it offers irrefutable proof that in order to fully understand other peoples pain and suffering, we must first recognise what kind of pain a person is in – emotionally, existentially, physically and spiritually. While pain relieving drugs are almost always necessary in palliative care, there’s evidence to suggest that the use of morphine and its ilk can mask spiritual pain. I have heard stories of many people who are dying who have refused pain relief so they could just BE. They wanted to experience dying in its infinite form and to be present. That takes momentous courage which the dying seem to have in spades.

The day before I flew to Adelaide for the conference, I was lucky enough to do a Death Midwifery workshop with Dr. Michael Barbato. During the workshop, Michael discussed these issues as well as quality of care, the evolution of spiritual care, and midwifeing the self, which is something I will address as another tool of my trade in another post. One of the last things Michael shared with us was a mantra for the living and the dying which I will leave you with as I sit at my desk on this early evening.

I forgive you.

I forgive me.

Bless you.

Thank you.

I love you.

New beginnings

I had some really good news that I wasn’t able to share with you until I received my acceptance letter in the post today. I’m in the latest intake of a pastoral care course I applied for last year through the Queensland Institute of Clinical Pastoral Education. My interview was about ten days ago, and it went so well that I was offered a place on the spot, so I was quite chuffed to read the letter today. I’m going to be based at one of the city’s largest trauma hospitals.

I don’t ‘belong’ or subscribe to any religion, though if pressed, I would have to say that I’m agnostic. I have my faith and my own spiritual beliefs, but this course is so far removed from being about me – the care industry rarely is. It’s really about how I can best serve people who are ill, suffering and dying, and how this course will, no doubt, extend my charter of compassion. I suppose that it’s a little about me and my experience, but I’m there to listen.

I wrote in my application that it’s never been my intention to be a counsellor, but to ‘be a person who can listen and offer emotional and spiritual support to people who may be in distress due to illness, disability or other trauma’. I once looked at studying social work, and look at it hard I did. After weighing up the pros and cons, the cons became insurmountable – the main offender being burnout.

I see pastoral care as a gentle vocation, and it’s more of a team-oriented approach with other medical professionals that I hope to one day be working closely with. Suffice to say, pastoral carers are quite low on the allied health rung in hospitals, but as I heard last year at the Spiritual Care Australia conference, the landscape of care is changing, and pastoral and spiritual carers aren’t being shunned as they once were. I heard firsthand how nurses are actively calling upon us for their patients who are in an existential or spiritual crisis, which is heartening to say the least.

It’s going to be tough, harrowing and rewarding work. I’ve been a volunteer with various charities and organisations since I was a young girl – namely Cystic Fibrosis and Queenslanders Donate, which is now DonateLife – and while I don’t see my work in pastoral care as volunteer based, the volunteering and other care work I’ve done with the sick and the dying will prove to be an invaluable foundation. Now, I’m no Mother Teresa, but I have high morals, a strong ethical constitution and tremendous expectations of myself. My belief system is one of kindness, respect, equality and compassion, and my experience with illness and death will no doubt temper the potential stress I may encounter with the training I’m about to begin.

I’m expecting to be challenged, humbled and probably brought to my knees as I learn about what it truly takes to be a great spiritual carer. Again – I’m not in the business of ‘fixing’ or rescuing people. All I want to do is comfort people when they are most in need of spiritual support; to help them navigate whatever emotionally perilous journey they may be on. Let the learning and listening begin …

Another angel at my table

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

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

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

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

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

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

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

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

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

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

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

*

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

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

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

the comforter being comforted

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

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

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

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

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

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

Who’s got the confetti?!

As I’ve rattled on in previous posts, I found my calling a number of years ago, and that that calling is Palliative Care (sometimes called ‘end of life’ care). My life has been characterised by death and dying (with a lot of very happy living in between), and I’ve helped lead the way for friends and family who have died, where I’ve played a role both directly in their presence, as well as in spirit.

I started my tenure as a death ‘midwife’* when I was very young – far too young – but I’ve long yearned to serve in palliative care. The only that had been standing in my way was the distinct lack of education/teaching resources that hadn’t been available in a non-nursing graduate setting.

As it stands, there are now quite a few programs across Australia in palliative care education at a tertiary level, and I’ve been patient in hoping that one day, I’d be able to learn about my passion so I can actually practice it.

Yesterday, I received an offer from La Trobe University in Melbourne for their Graduate Certificate in Health promoting Palliative Care. I screamed, cried, ran around, did a handstand, and proceeded to call my parents and some close friends.**

I’m so proud of myself for a few reasons. It wasn’t a normal university application process. I had to write a personal statement as to why I believed I would be suited to the course. I also needed to find someone who would write a solid support letter. My application letter just got longer and longer, and thanks to my proofreaders (you know who you are), I wrote an outstanding letter. For some support ‘material’, I asked my spiritual mentor Tenzin Chodron from Karuna Hospice to explain to La Trobe why I’d be suited to the program, at which she wrote an edifying and heartfelt letter. I believe Chodron got me through.

Putting yourself out there isn’t the easiest thing in the world, but with some amazing friends and peers telling me to go for it, gave me the courage to apply. I’m the happiest I’ve been in recent memory, as I wasn’t sure whether I would be offered a place because of my lack of a medical background. But as it turns out, La Trobe’s Palliative Care studies program is  holistic, in that the course material lends itself to the spiritual side of end of life care, as well as the practicalities of what palliative care involves.

And so, a new journey begins, and I couldn’t be more excited. Stand up for your dreams, people! Allow yourself to be supported and GO FOR IT!

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* my name for a PC practitioner 🙂

** screamed some more.