Tag: transplant

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.

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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.

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Cooking: Chicken soup and green smoothies.

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

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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.

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

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

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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.

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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.

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(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.

When you get punched in the face

A couple of years after my transplant, I was assaulted. Had the shit beaten out of me. What made it even more shameful, was that I was beaten up by a girl. Of course this rationale has evolved with the gradual unfurling of my life and hard won wisdom, so I know that it doesn’t matter who hits you. Girl, boy, woman, man – it’s violence and it should never be tolerated.

So here’s some back story: I had been at a Cystic Fibrosis luncheon (as was tradition) and I admit that I was intoxicated during the day, but stopped drinking early afternoon. Around dusk, my friends and I hopped on a ferry from Southbank to go to a friends place at New Farm. I was feeling clear headed and had been drinking water for quite a few hours.

When we arrived, there were quite a few people we didn’t know, so we sat around in a circle (old hippie habits die hard), and I got to talking to a guy about where we had been. He seemed friendly – long red dreads, not quite a hippie, but more of what we would call a ‘feral’ (terrible term, I know, but it was a term nonetheless). I explained that I had CF, to which he responded, ‘you look really well,’ so I told him that I had had a transplant and he commented that I probably had some wicked scars.

We engaged for about twenty minutes, but things started to get a little strange and off topic, so I excused myself and walked away. This man’s wife who I thought looked really friendly, for she too had long dreads and was wearing Doc Martens which transported me back to my youth – had seen us talking, and as she turned towards me, a storm rose in her face and she asked me what I was looking at. I replied, ‘absolutely nothing’, picked up some grated cheese that was on a table with some other snacks, and threw it behind me as I walked away. I wasn’t aiming for her, but it was her perception that I was.

The next thing I remember, she was on me and I was up against an old car; punching me in the chest and ribs, and then grabbing my head and smashing it into the car window. My first thought was to protect my face – I was wearing glasses after all. Then a horrific thought crossed my mind – that my head was going to be smashed through the glass (old glass that shatters, NOT safety glass that sticks together), so I just took it.

She smashed my head into the window so hard that my glasses flew off, she lifted me up against the car so that I lost my shoes, and my friends were behind her screaming to leave me be. The thing is, she was Amazonian when I am not, and she just kept the blows coming. Her husband eventually dragged her off, but she was trying kick me in the face. I copped a boot to the chest which took the wind out of me, and I stumbled away while they got in their car and took off. Then they came back. After about fifteen minutes (we were still waiting for a taxi at this point to go to the police station), I saw her get out of the car, light a cigarette and walk back to the party as though nothing had happened. She was so oddly blissed out and mellow, and my educated guess was that she had had a hit of heroin or something similar which had calmed her down.

I don’t fight dirty. Never have, never will. When I was going in high school, my Dad taught me how to box; how to protect myself even though (or because of) I was going to an all girls school. And so that night, I didn’t fight back. I went into protection mode. If I threw some grated cheese behind me that she mistook for deliberate hostility, making her believe it was ok to beat me up, then that’s on her.

My dear friend M (who happened to be a lawyer at the time) and I went to Police Headquarters and I wrote down a preliminary statement. My memory was pretty fresh, but I was in shock, so the statement was brought up in court as being ‘contradictory’ to my official statement that I made about later that week.

When I got home, my Mum took photographs of the bloodied scratches and bruises across my chest and neck. Even more concerning was that I had had a central line removed just two days before and she had scratched the scab off it and drawn blood with her fingernails. Later that night, I struggled to sleep because the attack kept playing like movie reel in my head – a punch here, a kick there.

When I tried to get out of bed the next day, my whole body ached like I had a really bad flu, so I called the transplant unit and they said to come in straight away – I needed to be checked out, x-rayed and have bloods taken. I could barely move and because this girl was possibly a drug addict, I had to be tested for HIV and Hepatitis because as I mentioned earlier, she had scratched the scab off my CV line and drawn blood. I had fourteen x-rays, was checked out by a physiotherapist and then I went home to rest.

It felt like an age waiting for my blood results to come back, and I admit that I was feeling pretty distressed. When they came back clear, my doctor, family and I were relieved to say the least.

The worst thing about the whole situation was that the woman who assaulted me was in the care industry. She was an occupational therapist at a major metropolitan hospital and  she knew that I had had a transplant and therefore was a ‘soft’ and vulnerable target. My transplant consultant wanted her struck off immediately, but somehow that didn’t transpire.

Court was brutal and unforgiving. I felt so terribly guilty that my friends had to testify, but I was determined that this person was to be accountable for her actions. Her husband arrived at court wearing no shoes and repeatedly walked up to the courtroom to listen to proceedings when he shouldn’t have. The lovely detective who took my official statement didn’t think this was right, so he was given a warning to stay away or go elsewhere.

When I had to get up on the stand, I had strips torn off me by her lawyer (I still remember his name), and he manipulated what had happened on the night, where I was a cheese-throwing bitch who provoked the attack. I know that’s what lawyers are supposed to do, but a few minutes into the cross-examination, I was a bawling mess. In fact, he was very capable at making me feel like shit, but I was lucky enough to have the states top DPP who representing me. I also had a wonderful and compassionate detective who actually gave a shit about what had happened. My lawyer made a very strong argument that she was a violent offender, and after an arduous day of court, Mum and I hopped on a train, but as we were nearing home, we were called back.

I had to get on the stand again, and to cut a long story short, the woman who assaulted me was found guilty of grievous bodily harm which meant that she had to pay me a reasonable sum of money and complete 200 hours of community service. What upset and disappointed me the most, was that there was no conviction recorded. In fact, I would have happily done away with the money in place of a conviction. The fact that this person was an occupational therapist working with vulnerable people and who possibly had a drug problem disturbed me greatly.

For the first few months after the attack, I was constantly checking my back, especially when I was at uni. I didn’t feel safe and that really grated me. It lowered my self-confidence and even though I was already hyper-aware of my surroundings after being with my Mum when two piss poor excuses of men who mugged her tried to run her over in a carpark when I was fourteen, I became a little paranoid for a few months and was always at the ready to fight. My nerves were shot, and even someone running behind me was enough to set me off and put me into fight or flight mode – mostly fight mode where my  fists would curl instinctively until the perceived threat had passed.

Looking back, I was so incredibly naive to think that these people were good people. I’ve always looked for the positive in everyone I meet, and while it was a hard lesson to learn, I refused to let my assault dictate who I engaged with, and soon I was feeling more positive about interacting with humans I did not know – I was just a little more selective.

The entire process, from the assault to the court case, exhausted me and my only real escape was studying for my creating writing degree, which ripped me back to my youth where study was my escape from all of the death and suffering that was all around me on an almost daily basis when I was in hospital. Friends deteriorating before my eyes, friends dying, trying to help said dying friends die a more comfortable death, seeing kids pinned down so doctors could shove in an IV or a nasal-gastric tube for feeding. The word brutal  comes to mind again.

I rarely think about my assault, but something a couple of days ago triggered a surge of memories, and I wanted to write about (and share) what happened. Violence is never the answer, and instead of being embarrassed about not fighting back, I’m proud that I protected myself as best I could and that I walked away with grace and my dignity intact.

You may ask why I didn’t just let it go and not report it to the police. I was always going to report it to police because I  was raised to believe that everyone needs to be responsible and accountable for their actions. I found out a few years later that her marriage ended. Did that make me feel good? Temporarily, yes. Now? Not so much. Did I want something awful to happen to her after she assaulted me? Yes. But then I learned that when you dig a grave for one person, you need to dig another for yourself, and that held no appeal for me. Do I hope that she’s now ok? After my own addiction issues, yes. More than ever. I forgave her a long ago, but I will never forget the physical, emotional and spiritual pain she put me through. Spiritual pain? Well, that’s another blog post entirely …

 

 

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 …

My new normal

I’m just about jumping out of my skin. I had my first good night’s sleep in eleven days, so I’m feeling rested. I’ve been waking up around 4-5am, which is not the norm for me. I’ve never been a morning person, though when I first moved into my beloved flat I became one of those morning people. I’d brew a coffee, take it out onto my balcony and look out on the morning. I’d managed to draw a line between happiness and appreciation – a thickly painted line, slapped on with a wide, bristly brush and broad, unsteady strokes. I’d fill my lungs with air, celebrating the beauty and freedom of breath.

Every Saturday, I’d walk to the bakery where I’d treat myself to one or three of these great big, hunking German doughnuts called Berliners. I’d have a chat to the bakery dude and toddle off home to warm my doughnut (not a euphemism), then I’d sit down with the weekend papers and a cuppa. I’ll admit it – I’m a girl who respects ritual.

For the two years or so I was high, I slept and became a shadow of myself. I sliced myself thin as I burrowed my way further down the rabbit hole. I wasn’t achieving anything because being high precludes you from being productive in any way, shape or form. They were wasted years, and years I didn’t have the right to waste. I’ve been on borrowed time since I had my transplant. I know that. But now that I’m off the gear, I’ve been wondering if this is what my life will be like now. Is this what my life would have been like had I not been addicted to drugs? Early mornings full of joy instead of the dread of where my next hit was coming from, believing that the drugs were somehow helping me? The drugs did help for a time when I was using them for legitimate pain, but before I knew it they owned me and it was like taking out a loan I could never repay.

My pleasure senses were dulled to the point where I just wanted to take my next pill, and I was suffering – truly suffering – from anhedonia, which is when your pleasure receptors basically switch off. My brain wanted what my brain wanted, and that was more of the same. There was littlejoy, no moments of natural euphoria and I was constantly exhausted. I couldn’t write. I had trouble reading.

When I was rationing tablets in Barcaldine in 2013 and getting restless limbs/akathisia, I knew I needed help. I started researching what drugs do to your brain. After all, I was already well aware what they had done to my spirit. I looked at Narcotics Anonymous, and worked out it wasn’t for me. I found my addiction therapy doctor, started opiate antagonist therapy, and the rest is history.

I’ve mentioned this before, but when I did my TEDx talk last year, I was unable to memorise my twenty minute speech. For someone with a near photographic memory, that was quite distressing. My brain was recovering from drug abuse, and I still don’t know how much they have impacted my brain function. I had some pretty hairy moments when I’d taken too much oxycodone and my respiratory system became depressed. I’d have heart palpitations, and one day I had to give myself CPR for about twenty minutes after I had overdosed. I was in acute tachycardia and I didn’t know if my heart had been damaged. It still shocks me that I’m not an overdose statistic.

For me, having a terminal illness gave me an acute absence of fear. I grew up fearless, loud and fierce, and I took more risks because a terminal illness is like having permission slip to engage in risk taking behaviours. It’s well documented that people with a life-limiting illness take more risks than people who don’t have a closer ‘use by date’. There’s a sub-culture of the fearless; tattoos, collecting exotic pets, dangerous friends and dangerous habits. I know a lot of people with illness who favour driving fast cars and adrenalin sports. But you also seek your own truth and authenticity, which is far more admirable. It’s that whole, ‘do no harm but take no shit’ dictum.

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Image courtesy of Laura Lwin

I’ve been asking and answering a lot of questions about myself of late – a little introspection, if you will. Ruminating over what my life would or could have been like had my addiction not consumed me. But it did, and I’ve never been one for having regrets. For me, they’re lessons. Regrets stifle your present and paralyse your future.

And another lesson – age is a privilege. I turn 39 tomorrow. Every extra year has been such a gift, and I’m revelling in moving on with life armed with respect, gratitude, boundaries and a sense of responsibility to NOT FUCK THIS UP. The good news is that I can’t see that happening because I’m in the midst of a passionate and fervid affair with my life, my friends and family, my writing and my work. Speaking of friends, on Sunday night, I went out with three of my nearest and dearest – one friend I went to both primary and high school with. It was pretty bloody special.

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Leg show.

Tomorrow I’m driving down to my friend’s farm in northern New South Wales where we will celebrate my birthday and turn the sod for the new year. The silence, being in nature, that grasp of acuity, the cattle, and the trees embroidered with birdlife seem to be a panacea for city life. And just so you know, I’m not into resolutions – I’m into revolutions. At the end of the day, we are the product of our choices.

Have a Happy New Year, one and all. Big, BIG love. Oh, and here’s a little poem I wrote back in 2004 on the day I left Canada to travel to see my friend artist George Bleich in Carmel-By-The-Sea. Here we are back in 2004 and here is my tree, The Lone Cypress. Now that’s another story …

 

Firs only sleep

when branches draped in white

fall with  frigid arms, then pitch upward like an angry child

when the sun passes through them like a mood;

never knowing to swing a bitter heat to pat down the ground below

 

Firs only sleep

when concrete skies close over like a skullcap.

The sky yields to a day hue,

leading to kingfisher blue skies

peppered with stars and Luna

until the spring, when they are free.

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.

My summer of love

Earlier in the week, someone asked me what I’ve been up to. ‘Reading, writing, stuff …’ But mainly reading and writing, hanging out with my sister and my nephews, working, planning, walking and dreaming. It’s true – I’m an abject failure of a social butterfly, although I did actually go OUT Friday night to the opening of Brisbane’s The Soul Pantry – a fabulous florist in Newmarket you should visit if you live in Brisbane. I mean: TERRARIUMS. I am obsessed. Such a granny. 

It’s my favourite time of year. Yes, I love Christmas and will be trimming my tree (and the rest) this weekend, but it’s summer that truly has my heart. I had a passionate relationship with summer in my youth – days of water-skiing, inner tubing and swimming at my home on the Brisbane river; meditating on the pontoon at water level, and slathering coconut oil on my body to bake myself like a ham.

But then I had my transplant which meant no sun. Or, I could have sun, but with a family history of melanoma, my immunosuppression and my wish for eternal youth, I literally took shelter and have been alabaster ever since. It took about fourteen years for me to re-embrace summer and over the last couple of years, I’ve rebooted my brain and learned to adore what I call my ‘Summers of Love’ once again.

This calls for the following:

  • A new swimsuit and rashie √
  • Bebel and João Gilberto on repeat √ (and Enya – don’t judge me. Did you know she has a new album?) √
  • The radio tuned to ABC classic FM  √
  • Naked cooking, naked dancing, naked writing. Okay – just entire days spent totally naked √
  • Admiring the lights of the city – sometimes with clothes on – hoping no one has binoculars trained in my direction √
  • Writing on my balcony, watching and listening to the birds flying just out of my reach while the sun sinks behind the mountains √
  • Scratching words together for my novel √
  • Watching ‘Love Actually’ & ‘Eat Pray Love’ (and crying a lot) √
  • Late afternoon wandering by the river √
  • Stealing the swing from unsuspecting children at the park √
  • Coming to the realisation that a whole year has passed and I HAVEN’T KILLED A SINGLE PLANT √
  • Reading Les Murray’s latest collection √
  • Thoughts about new balcony furniture (Keren Brown, I am looking at you) √
  • What-the-fuck-am-I-going-to-cook-for-dinner mania √
  • Clandestinely skinny dipping in the pewl come twilight  √
  • Mangoes, mangoes, mangoes √
  • Sunscreen. All day, every day √
  • Make friends with salad. Yeah, not convinced unless it’s covered in five types of cheese.

And so that is my glamorous life. I got all of the stuff I love and adapted it to my post-transplant, no sun life. November has been a pretty sedate month, and December is looking distinctly unremarkable. But I like unremarkable and ordinary and as much as I’d love to be in Barcy now, that trip will have to wait until another time. 

My novel (set in the outback in the early 70s) is coming along (1200 words today – take that, Hemingway), an epic and covert poetry project is beginning to take shape and I’m working on a short story. I never write short stories, but the last one received a great review in the Sydney Morning Herald, so this in itself is miraculous.

I turn 39 on New Years Eve, and as with every birthday, I have no idea what I’m doing. Big changes can happen between now and then, but I seem to always escape to the country for my birthday. Last year, I spent a very sedate birthday at my folks beach house at Mooloolaba, and the two years before that, I stayed at my friend Nic’s farm in the hinterland of Byron Bay where we did we got our witch on and burned shit. Going by the year 2014 turned out to be, I can say that burning shit GETS SHIT DONE. I highly recommend it #manifestinglikeamofo

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I’ve never spent a NYE at my place in the city and don’t know if I ever will. I feel in limbo with its frenetic pace – almost as though I’m shackled – whereas out ‘there’, whether it be Barcy or the farm or the beach, I am unencumbered and free. 

Waking up in the quiet of dawn and going for a surf on the first morning of a new year is such a gift. There’s nothing that quite matches its intensity or sense of calm. Bobbing in the ocean for while, eating a solid brekkie, sinking into a good book, doing some writing of my own and going for a wander is my ideal. Simple, yet ideal.

But first I have get through Christmas, which isn’t to say that I ‘endure’ the festive season. Quite the opposite, in fact. I love getting my yule on and buying gifts for my nearest and dearest. I’m in full blown love with my new baking fruitcake tradition to the point where I’ve now had my fruit mix soaking in rum for ten days. When the weather cools down, I’ll bake. 

As I type, it is 6.27pm. Cicadas embroider the air which will forever take me back to the vipassana I did in 2013. There’s the odd siren, barking dog and the bristle of leaves in the evening wind.

Over the next couple of weeks, my opiate antagonist therapy will whittle down to zero, so I’ve been thinking of how I can celebrate this milestone. I don’t drink, so I’ll most likely keep things unremarkable and ordinary, write down some words and walk along the river. I’ll open my arms up to the world like the protagonist in my novel did today and feel the salt building on my skin. Salt is something I’m quite fascinated by, and not just because it grows in little mounds on my skin in summer that I can season my fish and chips with.

While I have a humanities brain, I find the  chemical breakdown of salt fascinating and  beautiful. On their own, sodium and chloride are highly toxic. But when they come together, they create something really special. Salt is stable, non-reactive and compatible with life. Salt gets a lot of bad press, but on a hot day like today, I’ve gobbled down no less than fifteen salt tablets because I lose excessive amounts through my skin as a CF’er. Where you might have to cut salt out of your diet, I can dump it on my food in excessive quantities. Without it I become hyponatremic which can be fatal, but that’s enough histrionics for today.

Being able to be completely free of Suboxone is going to be absolute freedom. I’ve not had one craving for anything drug related since I started on the therapy in 2013, and that alone lends me a steady strength. Back when I first started lining up at the chemist at the junkie counter, I knew I had my addiction cornered. There wasn’t a part of me that didn’t want to be free from the slavery that is addiction and I knew that I would get here. How did I know? Because once I make my mind up about something, I get it done. Whether that’s being stubborn or just being really fucking determined, I’m not sure. Maybe it’s a potent mix of both. Knowing I had this beat from day one was essential for my recovery, and the day I take my last dose may be unremarkable and ordinary, but as I’ve always maintained, there is great beauty in the ordinary. Even when you can’t see it, it is everywhere. If you don’t go in search of magic, love or anything else you want in life, you will never find it. The Japanese philosophy of wabi-sabi is deeply rooted in revering nature, the everyday and its imperfections. It’s a state of heightened consciousness where there is beauty hidden in how you experience the world in its state of constant transience. The Buddhists were really onto something with their reverence for impermanence, so I urge you to embrace your wabi-sabi. If that’s not enough, then maybe some Roald Dahl will do the trick:

‘And above all, watch with glittering eyes the whole world around you because the greatest secrets are always hidden in the most unlikely places. Those who don’t believe in magic will never find it.’