Tag: strong women

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 places I go …

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It is akin to a dream, this dense clump of trees unfolding before me, reaching sharply into the sky. As I walk through the forest under canopies of palms and eucalypts and a discord of screaming birds, my feet arrive at a bog. I’m at the lip of a lake I cannot reach for the rain that has distended the ground. Perhaps Jacky can take me tomorrow so I can see where it splits from the earth and drops away.

There is life above, around and below me. The swollen ground silently objects under my boots and as I lift my feet, it plumps up like a pudding.

The air is slow and dense from woodsmoke, and it anchors me to the moment. I crush leaves between my fingers; that stain of scent not leaving the folds of my hands until I bathe later that evening.

With the sun caught in the canopies – splintering shadows onto the ground as though they are dancing a jive – the screech of a cockatoo and flurries of parrots embroider the Piccabeen palms. Their silver mottled skins are grooved with what looks like inverted feathers, as though someone has taken the time to stencil each one.

Early evening yields to the call of the kookaburra, cackling at our stupidity and the irksome way we do not love them every minute of every day.

Diamonds scuttle across the water as the day reaches into dusk. The milky way splashes across in silver and white – a smattering of light and relief in their spilt majesty. The sky cradles a waning moon.

Being here, it takes time to breathe at a slower pace; to let my belly soften and sink into my winter bones. I find myself in a world where it is becoming more difficult to disconnect from the goings on of humanity, my country, my community. There is a deep well within me of wanting to be free from the destruction, the war, and the suffering I have no control over. But then I realise for the millionth time that I control nothing. I can but try to go forwards in what seems to be the right direction. I can shepherd and steer myself, yet control does not belong to me. It never has.

I am finding myself enjoying growing older. Not only because I never expected to, but with the growth itself. I am assured as a human being, though never would I believe that I am particularly ‘good’ at any one thing, although I am on my way to becoming an exceedingly keen listener, and that itself is an art. 

Another art (and something I am not particularly good at) is writing. It is a pursuit I will never be great or even exceedingly good at. If I ever become half the writer I have yearned to be all my life, would that be a paragon of happiness? How am I ever to know if I am anything over than average unless someone tells me differently? And even then, can I bring myself to believe them? In all likelihood – not a chance.

With age comes wisdom and truth. Some are fraught with despair, while others have a far more convivial pulse. I remain unconvinced that absolute truths do not exist, although these things often come down to perception.

Breaking my bonds with the city, I ‘go within’ as Jacky calls it, and reach back into the folds of myself I have forgotten or allowed to lapse. I come back to breath, firing my body in the sun. My lungs expand; each lobe bristling with each seemingly bottomless breath. I readjust the way a spinnaker does downwind. Silence is my ballast.

As I come to see my senses as a decoy, I’m carried towards a deeper understanding of who I am, where I am in the world and how I came to be here. I temper my body, but do not become weary, and there is a far greater element of not needing answers – to embrace the mystery and come home. Should books and music, baths and tea, shadows on the wall from the moon, and the odd storm be all I had for company, I would want for nothing. For there is equanimity in the quiet, and peace in patience.

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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 …

Oh my – we have a New Year IN our hands and it’s going to be radtastic!

Yesterday I turned thirty-nine – a stage of life I never thought I would or could ever reach from when I was was a little girl, to when I had my transplant and certainly after I survived cancer. Each year is such a gift, and age is a privilege.

Lungs in perfect working order for seventeen years? √

Cancer in remission for eight years? √

Two years clean? √

Haven’t lost my mind? √

Yesterday I made the drive down to my friend Nic’s farm after I’d caught up with my folks – the people who have helped shaped me into the person I am today. I love them SO HARD.

 

Once I got to the farm, an overwhelming sense of peace washed over me until Bert and Harry (N & B’s dog sons) greeted me with whipping tails, over eager paws and a whole lot of tongue. We celebrated my birthday and it was an afternoon and evening of oodles of love, laughter, joy, amazing gifts and spectacular food. In four words? It filled my cup.

I felt full. My soul was full. My belly was full. My spirit was full. Nic and Ben remember when I was stuck in that cycle of addiction, and now to see me free, happy and awake – truly awake – makes them feel pretty damn proud.

Last night, Nic gave me my gratitude stone for the year – a beautiful brecciated or ‘poppy’ jasper which will serve to protect and ground me for the year ahead, because according to Nic, it’s going to be a big one, and I am ready to shine like a fucking diamond.

My gratitude stone is mine and mine only and it is strikingly beautiful. At first I had mixed feelings because I’m not an avid fan of red, but with its base colour of deep rust which reminds me of the outback, and the gentle swirls of pink, cream, black and grey, I ventured inside this stone today during a meditation and it was a place of safety, healing and spiritual refuge. And rainbows! And we all know rainbows fucking rock.

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So why am I telling you about this? You see, Nicole has created a planner called the ‘Year of Me Planner’. Now, whether that’s manifesting energy, magical engagements or masterpiece enactment (all Nic’s words), it’s your opportunity to make the most of the energies of 2016.

I was lucky enough to receive the year long online course and planner to the ‘Year of Me’ from Nic for my birthday, and I just about hyperventilated with excitement. I’ve been working on it most of today and it has soothed my soul. The Year of Me Planner allows you to create your own map to connect to your intuition, intentions, power and purpose. Sounds a bit hippie? Whatever! I’m excited that it’s a little witchy and really fucking sensible. Here are the tools I’m using for 2016 … That’s right – oracle cards! I’m a hippie from way back …

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Nicole created this planner because she wants to help people plan, create and achieve their dreams with passion and precision. A one year online membership means that you’re part of a supportive online community with Nicole at the helm. It’s a beautiful safe space, and what people have shared today has been quite heartening and a little emotional. It’s only day one, and I’m feeling ALL THE THINGS. So here’s the link to her website and the Year of Me Planner. DO IT.

 

The power of choice

I made a big decision yesterday. I decided that I no longer need my opiate antagonist therapy. I had planned to stop on my birthday, which just happens to fall on New Year’s Eve, but I’ve been feeling so happy and settled that I knew I could do it. And so I did. The ‘high’ from not having to take the bitter pills I’ve been placing under my tongue for two years was unexpectedly immense. I felt as though I could scale a mountain. I danced and howled at the fireworks that are barnstorming the sky every night before Christmas.

But then the night’s hands stretched towards midnight, and I toddled off to bed where the inevitable withdrawal symptoms began to kick in. I was hot, then freezing cold. I had restless legs and my arms were flailing uncontrollably, so I clamped them shut between my thighs and dealt with it. Because that’s what you do when you make a choice.

I woke up early this morning feeling like I could swoop into the sky with those long gone fireworks, but now I’m a little tired simply because I’m functioning on very little sleep. I don’t know how long these side effects will last – maybe a few days or longer – but they beat being reliant on any substance EVERY FUCKING TIME. I ate a hearty breakfast, downed a legal addictive stimulant coffee and with my full belly and happy heart, I thought I would sleep, but I’m feeling so free and alert that I had to write.

The last two years I’ve been on Buprenorphine have been some of the most memorable and active, simply because I wasn’t wasting my life getting high and sleeping my life away. I got shit done – lots of it – and last year was an incredible year that presented me with some life changing opportunities. This year has been a little more sedate, but just as fulfilling, if not more.

A couple of weeks ago, I had my last appointment with my addiction specialist and we decided that I would stop taking the ‘bupe’ on my birthday so I could start the New Year clean and fresh as a daisy. I won’t go into the specifics of my final appointment, but it was rich with poignancy. I will miss my doctor’s wisdom and his ability to be transparent with the realities about my state of addiction. He has been such a source of encouragement, and when I last saw him, we hugged and exchanged kind words. He also gave me a beautiful healing stone which I’ve added to my mineral collection (or crystals, if you want to call them that).

After ruminating about the supportive relationship with my addiction specialist, I realised that I had met one of the finest doctors who had ever treated me, and I’ve met hundreds – maybe thousands – of doctors. I’ve met doctors who shouldn’t be doctors, but this man genuinely knows how to care for his patients. He knows that their – our – lives are in his hands. He was one of the very few people I trusted to show my TEDx talk to prior to speaking on the day, and he had nothing but lashings of encouragement and praise. He’s the kind of doctor and human being you want as your doctor. He was in my corner from the start and I couldn’t have done it without him. Behold the healing stone …

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Peace. Joy. Liberation. THAT is how I am feeling today, and how I will continue to feel even through the flailing limbs and mad body temperature fluctuations. I will hold that feeling of pride close to me and that is how I will get through, because there is no other way.

I’m excited about a whole gamut of stuff right now, but I’m mostly excited that I can turn that bloody alarm off my phone that used to remind me to ‘dose’ at four-thirty every afternoon. No more alarms. No more bitter pills. No more lining up at the junkie counter at the chemist to be ‘dosed’.

I get to enjoy Christmas with my loved ones with no attachments, and while last year may be tough to beat (I had my sister back, and my parents, her and I danced the night away), I’m not out to break records. I’m here to live, love, be loved and give. It really is that simple. Yes, there have been deep feelings of shame I can attribute to my drug use (and lining up at the junkie counter), but like the scars on my body that whisper to me that I am a warrior, I’m more than happy to share my stories of how I have seemingly conquered my addiction to narcotics.

Now this may or may not interest you, but I’ve been reading a lot of peer reviewed papers and first hand experiences of how psychedelics are used in addiction therapy and to heighten spirituality with the dying. I’m more invested in how psychedelics are used with the dying, and while I wouldn’t do it myself due to the risks to cognitive function and the potential psychiatric issues, I’d probably give it a go if I was at the end of my life. While the potential for dependency is very low, what a ride it would be. Now have a look at this diagram:

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I don’t do alcohol, nicotine and my intake of coffee these days is practically non-existent in comparison to what I used to consume. Prior to transplant, apart from morphine, I would continuously suck on nitrous oxide (Entonox) when physiotherapy became too painful. It helped, but it can cause bleeding, so I was closely monitored and as such never had physio again due to uncontrollable pain. When I was dying, all that mattered was that I was comfortable from both a physical and spiritual standpoint.

Now take a look at where Psilocybin (‘magic mushrooms’), LSD and Mescaline are on the chart. Very low in dependency. It never seemed to hurt Jack Kerouac or Sir Ginsberg and their prolific writing. Until it did. A slew of writers ‘graduated’ to speed, benzodiazepines – and the rest – which inevitably lead to this: ‘Kerouac took so much amphetamine when he first discovered the inhaler high that he lost most of his hair and his legs swelled up with thrombophlebitis.’ Not sexy at all. So while it aided their art for a while, it swallowed them whole and Kerouac was dead at the age of 47. I am eight years away from 47 and do not want to die, so to think I was addicted to narcotics like morphine and pethidine horrifies me, because after heroin, they’re at the top of the list with both dependence and morbidity. Pentobarbital (often marketed as Nembutal) is right up there, too. Nembutal is the choice drug for euthanasia, and cocaine is not far behind.

I’ve spoken at length with friends who have tried all manner of substances over the years: ecstasy, methamphetamine, mescaline and LSD, heroin, morphine, cocaine, marijuana and alcohol. That’s right – alcohol is also on the list with a level of high morbidity too. Is this a cautionary tale about drugs? Perhaps.

So enough of the horror for me. Instead, I am going to try to not be horrified with how close I came to death when I was using, but will tap into the subtleties of that emotion when I need to feel proud. Did I win the fight against drugs? Did I win the fight against CF and cancer? Not quite, and for a couple of reasons. I’ve never particularly liked or understood the militarisation of illness or death, and I don’t plan on using that model for how I got through my addiction. I GOT THROUGH IT. And I got through it with support, love, the right medication, meditation, music, writing and fuck off stubbornness. I can’t say that I single handedly came through the other side without help, but I did most of the work myself because I’m not one to ‘lean in’ – I never have been.

Having an addiction specialist and a supportive family was one thing and while I only told a handful of my closest friends, they knew from day one that the only way I get through the really tough shit is on my own. I attribute that to spending so much time alone in hospital once my Mum had to leave so she could love and look after my sister and my Dad. Being alone gives you a tremendous sense of temerity and independence, as well as an imagination to rival Tolkein (although I was never going to be as crafty as he was – not even close).

I’ve never been codependent on another person, and I don’t know if that’s a good thing or not. More often than not, I’ve reasoned that it’s for the best because I’ve always wagered that I will live the rest of my life alone. Except that I’m not. I want to thank everyone for letting me just be. For still loving me. For asking how I’m going. For always asking and accepting that wherever I am, no matter what may be happening, ‘I’m fine, thank you’, even when I’m not.

Endnote: this is what I strutted – really strutted and danced – around the house to last night. Because I’m feeling good.

Why I’m NOT sorry

Today, my friend – the other Carly, Carly Findlay – wrote a shut up amazing piece about apologising and how she no longer wants to apologise for what is beyond her control. Shortly after reading Carly’s piece, I saw the photo Annie Leibovitz took of Amy Schumer in all of her near-naked and non-apologetic glory. I wrote the following on my chasing away salt water page:

I am loving this photograph of Amy Schumer by Annie Leibovitz for the 2016 Pirelli calendar. Beautiful and real, replete with her natural curves and belly. Amy writes on her Twitter account – ‘Beautiful, gross, strong, thin, fat, pretty, ugly, sexy, disgusting, flawless, woman. Thank you.’ No Amy, THANK YOU. 

As a woman with Cystic Fibrosis, I’ve always had a belly (even at 38kg) that I’ve been embarrassed about. Why? The way women who have won the ‘genetic lottery’ are portrayed in the media are partly accountable. Compare the 2016 Pirelli calendar to the 2015 one of highly fetishised shots of ‘supermodels’, and there’s another answer.

I stopped reading ‘beauty and fashion’ magazines many years ago for a couple of reasons. Firstly, there was no substance in the writing, and I felt that the articles were trying to dumb me down even though they carried the token ‘be empowered!’ bylines. They made me feel as though I wasn’t in charge of my life because everything from my personality to my body, my diet and the colour of my skin had to be curated to please others.

The images in these magazines come a close second. They are photoshopped and airbrushed to within a pixel of their life, which is not telling you anything new. Over the last year, I’ve been celebrating my body more and more because it is strong, capable and really fucking incredible. This body with it’s bi-afran belly and beauty marks (scars) has been through dozens of surgeries and survived. It took me a long time to accept – let alone be proud of – my scars, and while these surgeries have shaped me, they do not define me. My body is unique, beautiful, capable and tenacious and that’s something I celebrate every day.

Like Carly, it got me thinking that I’ve been apologising all my life for things that are beyond my control. A prime example is when I would have massive coughing fits for the twenty-one years before my transplant. I would be in a constant state of apology – always to the person next to me (especially if it was a boy) even when they would tell me I had nothing to be sorry about.

But what was I actually sorry for? For not being able to stop the brutal evolution of my dis-ease? For not being able to stop my lungs drowning in mucous where the only way I could get any relief from the crushing pain was to hack up green and brown slugs, or red if I had had a bleed?

I’ve been in bed with lovers and have apologised for my belly and my scars. The thing is – I know they don’t care because orgasms are more powerful than any mark on my body. My scars are a testament to my survival. I started calling them ‘beauty marks’ long ago, but I know that they’re just scars and most humans have them – just maybe not as many as I do. Men are told ‘chicks dig scars’, but I’ve never heard anyone say ‘men dig scars’. These indentations on my body represent my survivorship and they tell me – and others – that I am a warrior.

But sometimes there are apologies you have to make. I’ve done a lot of apologising over the last couple of years because I needed to say sorry to my family for lying to them about my addiction issues.

I was brought up with a fairly strict hand, replete with a really solid set of manners, and maybe that’s why I’m such a passionate apologist. I apologise a lot to men for no good reason, and as a society we’re conditioned to say ‘I’m sorry’ when someone dies. How about ‘that really fucking sucks – what can I do to help?’ Because you can always help.

I was talking to someone on the weekend about Facebook and how my personal presence on there is very small compared to what it used to be. Instead of having 800 ‘friends’, I now have about 80, and a lot of them are for my deathie work. The reason I deactivated my profile and had a ten month Facebook hiatus after I did my vipassana was because I had essentially turned into many of my Facebook ‘friends’ own private therapist.

I love helping people – it’s my passion and purpose – but when people would message me to help solve their problems, I would do the very best I could until I became overwhelmed and needed time out. Yes, I feel guilty when people work out who I am on social media (I use a pseudonym) and send friend requests which I decline, but I can’t be everything for everyone. I won’t say sorry – I’ll just say ‘no thanks’.

I spend time with my family and friends and I hold a sacred and sometimes all-consuming space for my patients and clients. I have learned to let go and learning that was not an easy lesson. By establishing boundaries, I’m happier and feel more secure than I ever have both personally and professionally, and while I have this blog, there are many facets of my life that remain private – things people will never know.

2016 will be my own year of no apologies because I’ve done the hard yards and have owned my shit. I hope this post doesn’t sound intentionally angry, but I won’t say sorry if you think it does. I’ve only ever been able to be aggressive assertive with doctors who have lots of letters after their names because I’m terrible – really terrible – at confrontation. I am, however, very assertive when it counts, like when I’m sick and I need to self-advocate. I’ve advised several mums who have children with CF to ‘get their bitch on’ because sometimes, that’s the only thing that works. Here is my anti-apologist pictorial*:

I will not apologise for not being afraid of my own shadow or loving rock and roll.

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I will not apologise for my pale skin or wearing a bikini with an imperfect body or the tattoo I have loved since I was 19. Or the vein mapping on the left side of my chest thanks to numerous DVT’s/clots.

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I will not apologise for loving minerals. Or rocks, or crystals if you want to call them that. They give me strength, make me feel grounded and bring me back into my body.

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I will not apologise for my bruises you CAN touch.

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I will not apologise for enjoying using firearms in a controlled environment. And besides, if you need any organs, I’m a crack shot.

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I will not apologise for NOT wearing makeup/face paint, or showing my vulnerability on the shittiest of days.

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I will not apologise for demolishing a ginger bread house come Christmas time.

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I will not apologise for only being able to draw rainbows and saying ‘fuck’ a lot. 

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I will not apologise for eating phallic themed desserts. Or any dessert, for that matter. Ok, ESPECIALLY phallic desserts.

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I will not apologise for being a bit of a hippie and banging on my Tibetan singing bowl. I love ritual and ceremony.

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I will not apologise for asking questions and seeking answers.

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I will not apologise for taking bathroom selfies in hospital clothes after I’ve spent time in isolation.

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I will not apologise for loving flowers. Any flowers. 

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I will not apologise for twirling. It’s my thing and sometimes it’s how I get through the day.

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I will not apologise for hugging the shit out of my best friends at every opportunity. Or hugging anyone I like or love. I will not apologise for public displays of affection. If I really like you, I’ll hold your hand and kiss you wherever and whenever the hell I want, and I’ll never be sorry for telling you how I feel. If I tell you that I like you, then I *really* do, and that’s called being very fucking vulnerable. I won’t apologise for that, either.

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I will not apologise for having a medical history that may scare you. It does not define me or my future, and if you can’t deal with stories about me at my ‘worst’, then you will never know me at my best.

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I will not apologise for being a secular chaplain who is spiritual and does not belong to a church. I belong to myself and the people I serve.

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I will not apologise for taking feet selfies, because they are my most redeeming feature.

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I will not apologise for writing every chance I get.

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I will not apologise for knowing my worth.

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I will not apologise for loving my nephews so much that sometimes it scares me.

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I will not apologise for my rad transplant scar and the free breast lift I got from Medicare (and my new vagina). They might be scars (I call them beauty marks), but they’ve made me into a FUCKING WARRIOR. So yeah, fuck ‘sorry’.

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*not an exhaustive list.

I am an addict

I posted a rant on my chasing away salt water page earlier today, much of which I’ve included in this piece. It involves the Cystic Fibrosis community – my community, if you will – and my burning question was this: when will people start taking responsibility for their lives? Why are there GoFundMe pages being created to ask for money so that CF’ers can reap the rewards for doing nothing? You are NOT a special fucking snowflake as the late, great Stella Young would say. You can listen to her fuck off amazing TEDx talk here. Her inspiration porn and snowflake theory applies to the entire illness and disability community. No one is exempt #sorrynotsorry.

I see CF’ers who are diabetic with failing kidneys poisoning their bodies by drinking Coke and eating crap for breakfast, lunch and dinner; pumping themselves full of insulin because they’re ‘addicted to sugar’. Trust me – there are worse things to be addicted to and this is where I share my ultimate shame story for the very first time.

MY NAME IS CARLY-JAY AND I AM AN ADDICT.

As some of you may know, I’ve been addicted to opiates over the years due to the pitfalls of CF, transplant and cancer – morphine, pethidine, oxycontin and more. I mentioned my on/off struggle with being addicted to drugs in my TEDx talk, but when I gave that talk, I had been keeping a far deeper secret I’ve not had the courage to write about until now because of the deep shame that feels like burning kindling in my marrow. Seriously – that’s how it feels. 

In fact, the reason I had to use a lectern during my TEDx talk was because my brain hadn’t recovered from the damage done from the previous two years of drug (ab)use and as such, I felt like an abject failure. I could not learn my eighteen minute speech in the three weeks I had been allotted, and for me this was mortifying. But once I walked out on that stage, I was fine; nerves a distant memory. I owe everlasting gratitude to the very empathetic Lisa Watts from TEDx Brisbane after crying my way through a conversation as to why my brain wouldn’t suck my speech up like the sponge it had once been.

I am well aware that I have paid my donor and her family the ultimate disrespect by getting addicted to drugs. And not just any drugs – schedule 8 controlled drugs as they’re called in Australia. I thought that because I was on prescription drugs and I wasn’t drug seeking on the streets that I was safe; that I wasn’t a drug addict. Except I was.

In fact, I remember my first hit of Omnopon in 1994 after I’d had surgery for endometriosis. It just so happens that the first love of my life was the one who injected me (in a hospital setting, of course), and that’s when the first flush of addiction bloomed. I unknowingly had sent myself to sea in a sinking ship. Marcello said I’d feel a little giddy, but the accompanying rush of ecstasy that washed over me as I sunk into my bed, yet rising into the air at the same time in one beautiful, sweeping motion is something I’ve never forgotten. In 1996, I became addicted to IV pethidine after complications with surgery, needing more and more every day until my doctors brought down my dose enough for me to get home. Funnily enough, I didn’t miss it and got on with life.

It was following my transplant when the seeds of addiction really came alive. My bones were honeycombed from osteoporosis and as such would not heal. My sternum refused to knit back together, and every time I rolled over in bed my chest bones would concertina and I would hear and feel them pop. Up until I had my cancer surgery in 2007, I had never experienced such pain as when my epidural was removed on day five post-transplant. It was as though someone had poured fuel all over my chest and set it alight. When I was discharged, I’d drink my morphine straight out of the bottle like an alcoholic would with whiskey.

After six months, my transplant doctor Scott Bell and my surgeon, Robert Tam sat me down and told me I was addicted to morphine. The first thing I felt was relief, and my first thought was, ‘no shit, Sherlock’. After agreeing to their suggested two week inpatient detox, I went home, poured my morphine down the sink and went cold turkey. I pissed the bed (and the rest), vomited, sweated like a beast in Hades, and felt like I’d been thrown from my skin. When you’re coming down, you get to a point where you feel like you’re climbing out of your own skin and so you actually try. And then, when you’re back in the world of the living, you emerge like a calf being born. Replete with an inevitably messy start, you find your feet, feeling fragile and a little lost. But as the days go on, you get stronger and a little more fearless. On day four, I began to feel human, and for now at least, the ride was over. I had my life back.

My addiction was most out of control when I wasn’t living with my parents. When you have nobody to be accountable to, you can just shoot up and flake out. The second you see that flash of blood in the syringe, you know you’re about to enter heaven, yet you go nowhere. It is like taking the deepest of breaths. That flash of red, so ironically the same colour as the flower it comes from. You feel totally dissociated and disconnected from everything and everyone, but when you’re high you’re hyper-sensitive to other people’s emotions. You laugh and you cry with people and then suddenly, the high has gone and you’re not sure where to go or what to do apart from wanting another hit, although for a few years I went without pain killers altogether. Why? Because I can.

But then 2003 came reeling into me, and sometimes restless rivers run deep. By 2004 I was back in the throes of addiction and I did ridiculous things like inject pethidine and morphine directly into my port-a-cath. That shit was going straight to my heart. Colour me surprised, but I’m lucky that I didn’t stop breathing. Because I’d built up such a tolerance to these kinds of drugs over the years, I reason that that is the only way I’ve survived such reckless behaviour. I have punished myself enough now knowing that I risked my life every day.

2004 came and went and I stayed clean until I was diagnosed with my pre-cancer on my vulva. Yes, my vulva. In order to get the pre-cancer under control, I had to use a drug called Efudix – a topical chemotherapy ointment which is supposed to burn the cancer away. I was on a potent mix of narcotics, but for good reason. My gynaecological oncologist (broken cunt doctor) couldn’t quite believe the doses I could tolerate, but when you have strips of skin hanging off and peeling away from your vulva, you need ALL THE DRUGS.

When Efudix was off the menu as a treatment, I underwent a radical vulvectomy which very nearly killed me. For pain relief, I had an epidural and was on ketamine and morphine, yet the pain team still could not get my pain under control. As I speak about in my TEDx talk, my Dad arrived at the hospital one morning to find me drooling like a vegetable and essentially non-responsive. Not long after I began have tonic clonic (grand mal) seizures and was rushed to ICU. If it were not for my father calling my lung transplant consultant Peter Hopkins, I’d be dead.

Pete told the doctors to rip me off all of the pain medication, which they did. As a result, I went into acute narcotic withdrawal where my body would thrash around the bed – and despite being in a coma – my system was fighting that sudden absence of opiates. To cut a long story short, I survived, had to learn to walk, talk, feed myself and had to deal with a poo bag. I was drug free and wasn’t even taking paracetamol, despite having a few ‘oxies’ left over from before my surgery which I made quick work of in 2008 when I was in the relationship from hell. The ex in question also happened to have a penchant for drugs and ran me dry, which was fine. I didn’t want to be on anything and was happily clean.

In 2013, I’d been back on narcotics for maybe two years. I was going nowhere fast and like any addict, I was always needing more. I would take drugs when I was happy, I would take them when I was sad and I would take them when I was indifferent. I doctor shopped, lied, and had no one else to blame except myself.

There were times when I was using where I had taken far too much because I hadn’t hit that high fast enough. My breathing would become laboured and just to get some perspective, after my cancer surgery I recall having such massive quantities of ketamine, morphine and other drugs that I would often get down to four to six breaths a minute. I remember waking up with a group of doctors and nurses surrounding my bed saying that I’d had ‘a little trouble with my breathing’. They had in fact pulled me back from the brink with a drug called Narcan which is what you see paramedics using on television with people who have needles stuck in their arms (or in Pulp Fiction. That big breath that Uma takes once she’s stabbed through the chest? Bullshit. Sorry to ruin the illusion).

In 2013, I was shaking the hand of death far too often, yet I still persevered with taking as many drugs as I could. I was in Barcaldine when I realised I was in trouble. I was in the middle of nowhere and only had a minute supply of drugs left for the duration of my stay, so I did what any self-serving addict would do and began rationing them out in the hope that my restless legs, vomiting and night sweats would settle down long enough for me to get back to Brisbane to replenish my supply . One of my closest friends and her husband spent some time at my friend’s cattle station with me and while I knew that Nic knew, I said nothing because I wasn’t ready to get clean and as is typical, I refused to ask for help. Nic said later she knew I was in the throes of addiction, but there was nothing she could do until I was ready. I had to be ready, but I needed help like it was yesterday.

A few weeks after I returned to Brisbane, I was having a very casual conversation with my Mum and for some reason I broke down. She asked what was wrong and while she was in the spices section of Coles, I told her that I was addicted again. She lovingly said that she would get me help and that we would get through it. Why we? Because my family and I are a formidable team – my Mum, my Dad, and my sister always offer me a soft place to land.

This confessional does not make me brave. I am not inspiring. I am not that snowflake that so many people wish to be or use as as excuse to be an asshole. I am human and humans are not infallible. I had to earn back the trust and respect of my family which is what hurt the most. My Dad could not believe that I had gambled so thoughtlessly with my life. He said he was disappointed – possibly the most most biting thing anyone has ever said to me. He wasn’t upset, he was disappointed. I cried, said I was sorry, but that wasn’t enough. I am still so, so sorry and am in tears as I write this. You should never have to earn back the trust of your family, but that was something I was so resolute about doing. My sister was incredibly supportive as were the literal handful of friends I told. They let me get on with my recovery, but were there to back me and I can’t thank them enough.

I’ve been clean for two years and while I’ve always maintained I’ve been compliant with my treatment (taking medication, regular check ups, eating well, exercise) I did the unthinkable – I gambled with my life that I’ve nearly lost so many times through no fault of my own, yet here I was throwing it away with every pill I swallowed and every (clean, single use) needle I was shoving into my skin. I only ever took drugs when I was alone.

In regards to the illness and disability community, I see people who are non-compliant with treatment and medication after transplant and other life preserving procedures. Over the years, I’ve seen transplant recipients start smoking again after their lives have been saved and hundreds of thousands of dollars have been spent to keep them alive. Just like my drug addiction, how disrespectful is that to your donor, their family and your medical team? The thing is, I got help because I asked for it. I went to an addiction specialist who put me on opiate antagonist treatment and I’m happy to say that I’m going to be off it for good before Christmas. I saw a great therapist, but after about three sessions my psychologist said I was too well adjusted to keep seeing him. We both believed that I was in a safe space and would not use again. And I haven’t. The only narcotics I’ve had have been when I’ve needed a central line placed in my jugular for IV antibiotics (they can sting and bruise a little like a motherfucker).

So what brought on this confession? This morning as I wrote about Cystic Fibrosis and suffering in general not being a competition, and about the ‘hierarchy of illness’ that has been created over the years, I sensed that I needed to own my shit because I was telling other people to do just that. You have a choice. It’s called being pro-active instead of being a victim. Whether you’ve had a hard life or not, there are many who have had it far tougher than you, but again – it’s not a competition of who is sicker than who, who is suffering more, or who is the most hard done by. If you can get out of your own head and ego, you’ll see that we are surrounded by suffering and we (you) have it relatively easy when it comes to illness. We live in a first world country, have world class medical services and welfare. For fuck’s sake, our transplants are FREE. In the United States, you have to basically crowd fund and hope for the best if your health takes a turn for the worse.

Having an illness or a disability doesn’t entitle you to have a Facebook or GoFundMe page where you’re essentially begging for money, ‘stuff’ and ‘experiences’ like hot laps and swimming with dolphins being given to you for just existing (and shame on you for going to Seaworld. Animals in captivity is cruel. Go and watch Blackfish).

So you – yeah you. Do you actually believe that the world owes you? Because it doesn’t. Life owes you nothing. But you owe life EVERYTHING, so stop being a self-entitled twat. Get a job, get your shit together, get an education or better your skills, get help if you need it like I did (all you have to do is ask), stop the victim blaming, lose the ego and get real. Be accountable and set a good example.

Drugs are a scourge and I know that I will never use again. But how can I be certain? The proof is in the pudding. I’ve achieved so much since being clean. I’ve found my purpose and I am bloody good at what I do. I’ve worked for the first time in years, spoken at TEDx and other events, my writing has been published widely, I’ve been churning out my memoir, poetry and I’m close to having a first draft of a novel I am thrilled with. I’ve made new and lasting friendships with my involvement in palliative care, my death midwifery and the death cafes I host, I started a Masters degree in Spiritual Care and have done my first unit of Clinical Pastoral Education so I could become a secular hospital chaplain. Maybe we’re all wounded healers to some degree.

So many opportunities have presented themselves and I’ve been in the right head space to take full advantage of that. Most importantly, I’ve had no cravings for drugs over the last two years because life is enough. I am enough. To be able to write and say that to people is something I’m proud of. Again, it is not so much that I am brave or inspiring. I’m just a human who wants to be a good person – to love and be there for my family and friends, to write like a motherfucker, to care for the sick and dying and to love and be loved. Life really can be that beautifully simple.


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