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.
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.
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.
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.
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.
Someone I’ve known just shy of twenty years said something to me back in September, and I’ve been ruminating over it as I approach my fortieth birthday. We were talking about our inner voice. You know, about what we say to our selves in the quiet of our hearts; the things we think, but keep to ourselves – that internal existential screaming (I know I’m not the only one). I’ve always had a contentious relationship with this person for various reasons, but we’re older now. Time has passed and there are children, and far bigger things than just us. She said she hadn’t changed much at all – that she still just blurts what comes out of her mouth without too much thought.
‘I have no inner voice,’ she laughed. ‘You never had one, but you’ve changed,’ she said. ‘You’re not like you were at all.’
‘I should hope not,’ I replied, smiling as I bounced her beautifully chubby baby in my lap.
I laughed it off with some friends later, although a couple of them were a little affronted on my behalf. Being offended was the last thing I felt. For me, it was like the linchpin of this year, because it anchored and grounded me in both spirit and purpose. I’m really fucking relieved I’m not the same person I was eighteen years ago, although …
From the outside, I’m so far removed from ‘who’ I was, or what I embodied. Certainly, I’m not as loud or as shut the fuck up ready to roll at any given moment, as is evidenced by the photos above. I was never one to take no for an answer, I would introspect and rage in equal measure, I’d rarely walk away from a situation without a fight, and if someone said I couldn’t do something, I damn well did it. It was never about ‘winning’ – it was about being heard. I learned from a very young age that growing up with a terminal illness like Cystic Fibrosis, I was either going to sink or swim.
I’m talking about what us old skool CFer’s call the ‘good old days’, when we had no mother to keep us safe at night in hospital when things like IV’s and naso-gastric tubes failed. Where any old doctor could waltz in in the middle of the night and have you held down with excessive force as they tried to access a vein. It was brutal. Parents couldn’t just decide to stay the night beside their child because it was never an option. It’s only very recently made sense that my first visual memories are of steel bars, as if looking through a jail cell. That’s how hospital cots were designed, but that’s a story for another time. So sink or swim, I found my voice very early and was quite the ham (conservative statement).
You see, the voice I was born with – my literal voice – was a gift, a weapon and my currency. It was how I steered myself in the world and was often my greatest ally. It was always with me. It didn’t matter where I was – I could use it, and use it I did. I could sing delicately and brutally, create incredible sounds and boom over all and sundry. I had twenty-one years with that voice, and when I woke up after my transplant, it was laying paralysed across my larynx in a state of eternal dysphonia.
I’d lost my gift, my weapon, my currency, and what I believed was my essence. Who was this squeaky woman so afraid to speak in case the wrong noise slipped out? Over the years I’ve buttressed myself against the world without it, and while I could say it’s taken me time to realise that my fractured voice was just a metaphor for life, that seems so trite and platitudinous, because we are all so much bigger than that.
I still sing every day. Some days I squeak like a pre-pubescent boy, and some days I can belt out a sound akin to a finalist on The Voice for very brief periods of time. I’ve learned to embrace the mystery, because singing with one vocal cord can be tricky.
Every year, my best friend and I go and see Deva Premal, Miten and Manose, where we sing, chant, laugh, cry, hold hands with people we don’t know, and connect. In February, I joined Deva Premal and a room full of strangers on a three day chanting retreat – all of whom I ended up praying with, hugging, eating with, and singing to. I re-engaged with my voice and felt connected to something tangible from what actually is a lifetime ago. On the first afternoon, my mind was filled with picture perfect captures of my pre-transplant life. It was like a Vipassana of my voice, where every moment played on a loop in my head.
I remembered competing and winning eisteddfods for primary school choir and vocal group, winning drama prizes in high school, and when I sang in the school musicals. The fun I had, the friends I made and still have, and the music director of one of Brisbane’s best GPS boys’ schools stopping me mid-song to ask if I’d sing in his jazz band. His well known jazz band, at that. I wish I could have, but in senior year, I was in survival mode with study and sickness and death.
I thought about when I was offered a coveted place in the acting strand straight after my audition for my drama degree, but was in full possession of the knowledge that my health was declining and was never going to get better. The acting strand was voice and movement oriented, and the physicality it would have demanded in such a small collective of students meant that I would have needed to not be sick. I didn’t want to let anyone down, so I politely declined and instead enrolled in the ‘open’ strand with most of the other drama students. I declined not because I couldn’t do it, but because I made a conscious choice not to start something I couldn’t finish. Did I ever resent my illness? Did I ever look at that elite group of actors and think ‘that could have been me?’ Of course I did, but I’ve never had a case of terminal pissed-off ness. I focused on what I could do, instead of what I couldn’t. In some strange, yet pernicious way, I turned my attention to more academic pursuits and did very well.
So while I meditated and seemingly went back in time on the first day of the retreat, I felt a towering shift where I was able to finally let go of my voice. I cried, my body moving like a metronome, ticking from side to side, and for the next two days, I was immersed in a space of love, support and devotion (and vegan food – nothing’s perfect, after all).
Was this a broken piece of me on it’s way to healing? It was not. As I’ve already alluded to, by the time my left vocal cord was paralysed, my life as I had known it was already over, and another that had been waiting for me was busy being born. A person is not and cannot ever be the same when they’ve experienced something as profound as a transplant. It’s like a one-sided exchange and a permanent declaration of gratitude. A debt you can never repay, except in compassionate actions, kindness and love.
I used to think that there was a redundant, unloveable, unusable piece of me that would be strung across my throat forever, taunting me. Like a silent bell that won’t peal when it’s rung. I now find comfort that there’s a fleshy piece of the ‘old’ me that sits there dead, making me brittle of voice. When I speak (or squeak), I have to think about how I’m going to hold my head so the sound comes out. A lot of people think I’m down with the lurgy, so that’s something that’s never changed – it’s just not my lungs anymore, thankfully.
Was losing my voice a blessing? Oh, yes. But more than anything, it was a powerful lesson in economy and expansion. Economy of words, sound, emotion, and so many other things. Expansion in compassion, empathy, love, self-awareness, and purpose.
Most of my fellow chanters said they’d be back next year, but I knew that I wouldn’t be. I walked into that hall with no expectations, but left with what I needed and more. Three days of memory tripping, chanting and emerging into the quiet heart of my mind, and I was full. This year has been one hell of a lesson – an awakening, if you will. I perhaps Some people have called it a fucked year, but with what I’ve learned about myself and other humans – the good and not so good – I wouldn’t swap that for anything. Three years drug-free, one year off opiate-antagonist therapy, and I am FLYING.
I’ve always dreamed wildly; the dreams being intensely vivid ever since I can remember. I’ve even dreamed about people who have ‘visited’ me. When I was six years old, my friend Rachel floated through my window and sat on my bed. I knew she had been very sick, and possibly knew she was dying. Rachel said that she had to go and that she was coming to say goodbye. We talked for a while and then she floated back out the window. I told my Mum about it the next morning, and as it happened, Rachel had died overnight. I remember Mum saying, ‘that wasn’t a dream,’ and giving me a big cuddle, then telling me that Rachel had indeed ‘gone’. I found it comforting that my friend had come to me to let me know that she was leaving.
I excessively dream/night terror. Many are strikingly real and can sometimes stay with me for days. A University of Iowa study in 2003 revealed that people who are creative, imaginative, and prone to fantasy are more likely to have vivid dreams at night and to remember them when they wake up. David Watson, a professor of psychology in the University of Iowa College of Liberal Arts and Sciences, said that the more bizarre a dream was the more likely his subjects were to remember it.
Around 2.30am this morning, I woke in a horrific sweat that saw me tearing my sheets off (who wears clothes to bed anyway?) I was exhausted from all of the salt I’d lost with the series of sweats that I’d had, so I made a cup of tea, swallowed a handful of salt tablets, dried off and after about half an hour, I ambled back to bed.
And then the dream began.
It started with a friend and her young son who was – at least in my dream – a trampolining champion. She had made a dessert of creamed rice, sliced peaches and berry coulis, and while one of my best friends and I tried to calm her down about her sons trampoline competition, I dipped my spoon into the bowl, making sure I had loaded my it with extra coulis based on my love of berries. With my friend being so panicked, I decided to jump on the trampoline with her son to get him started, and he blitzed the entire competition, beating kids and adults alike. My friend then relaxed and wondered why she was worried at the outset. Her son had excelled, her face had unfurled from concern and she was happy, content and still.
Within seconds of her son winning the championship, a media fracas erupted. My friend was interviewed and for some strange reason they interviewed me. Just as the reporters left, the article instantly materialised in the newspaper we were holding, just as they do in the Harry Potter books and films. The headline read ‘Born to trampoline’, but the article was about my medical journey, which of course bothered me immensely. This wasn’t about me. The reporter who had got it so wrong was Brisbane city councillor Milton Dick, so I chased him and Princess Diana up an escalator to tell them they’d made a mistake; that if they wanted an article about me than they should do one solely on my friend’s son and his trampolining talents and if they were that desperate for a piece on me, they could write a separate story. After all, it was all about the little boy winning the championship.
As I climbed the escalator, the air so dense and humid – like swimming through jelly – Princess Diana, who was at the top along with Mr. Dick, was trying to get a literal foothold of two books that kept being swept away by the lip of the escalator. I tried to get to the books, but she eventually trapped them with her feet and they both walked away. Because I was trapped at the top of the escalator, I threw a fishing rod and a broom at Milton Dick.
Meanwhile, at my 20 year high school reunion where the mean girls were still mean, I was standing in a communal bathroom – much like a toilet and shower block at a school camp, but with fancier fit outs – when a fierce African-American woman began swearing at me and spraying offensive words as she stood behind me. I looked into the mirror and I had long, dark brown hair, brown eyes and olive skin. I swore at her in a language I had made up, and she laughed maniacally because she thought she had me. She presumed I was speaking Columbian, which would mean I was speaking Spanish and I knew that she was an ace at the Española. I bit back, telling her it was Swahili, at which point she became bitterly affronted, flying into a rage. I’d won the first battle and so left the bathroom with a feeling of empty victory.
I then found myself at an event that Tom Cruise was MC’ing. There was a big room, much like one you’d find at a runway show where my school friends and I were getting dressed and made-up for some sort of grand event. I was the last to leave and thought it odd that Tom Cruise had waited until everyone had left, because he wanted to talk to me. I remember feeling panicky and not flattered at all. I thought (just like in real life) that he was weird and had dastardly plans to make me his concubine, or worse – his wife. The second time he waited for me, Uma Thurman was in the room and wouldn’t leave. Thanks Uma.
Skip to the next frame, and I find myself in the company of a tiger – his coat silken, but flocculent. In the foreground was a rawboned looking woman who had been looking after the tiger as though it was her child, and though she said the tiger really liked me, I just couldn’t trust it. It would deliberately catch a claw or scratch a tooth on my skin like some sort of weird power game. It was in control and it was like 9 1/2 Weeks, except without Mickey Rourke. And without the food and the hot sex and Kim Basinger’s hosiery and the horse whip. Dream fail.
And so the lady and the tiger were separated which left her bereft. So bereft that she collapsed and was laid down on a stretcher. Who cares, I AM STILL FANTASISING ABOUT CRAWLING ON THE FLOOR FOR VINTAGE MICKEY ROURKE BECAUSE I MAY HAVE WATCHED IT LAST WEEK. It then emerged that she had lost her daughter to Cystic Fibrosis many years before, and so the tiger was akin to a replacement for her child. She showed me photos of her daughter who she said I had known. But I couldn’t remember her child and felt an acerbic stitch of guilt.
I comforted her until her wailing became a soft sound of regret. She stayed on the stretcher, and her face shrunk as the minutes passed. It was as though the more she talked about her dead daughter, the more life drained out of her. She was pallid and cyanotic, having taken on the look of an end stage AIDS patient. We were at the top of an amphitheatre full of people; a massive audience. My parents were there, as were girls I went to school with and I ran down the sparsely spaced steps. The audience turned their attention from Tom Cruise to me; my bare feet hammering into the timber thumping through the air.
Skip to another room and there’s a young man with Down Syndrome who was sweet, but was using his condition by trying to kiss me. I resisted and told him ‘you can’t use your disability as an excuse to do whatever you want’. I said that it would be like me having CF and taking advantage of people and situations, and that it was morally wrong – ‘I know how having a terminal illness works, buddy. You can get concessions and things that would otherwise be out of reach, but just because you can doesn’t mean you should.’ PREACH!
A group of people made up of strangers and friends nodded in approval, and then I fell into a pond after missing a stepping stone because of the darkness that quickly peeled over me.
I often say I’m like the son my father never had. I love cars, and Dad has some beauties. I love driving my Jeep, and can’t imagine ever driving an automatic anything. I love speed – cars, boats, planes. And another thing … I. Love. Firearms. Always have and after today, I undoubtedly always will. Until today, the only gun I’d ever shot was a .22 in a string bikini (those photos are in a VAULT), when I shot a roo out on my friends cattle station in Barcaldine. I remember being in the pool with Jayde and Katrina when the call was put out that we had roos just outside the fence, so I pulled on my boots, grabbed the .22 next to the stereo which was blaring out (cue mood music) Fleetwood Mac’s ‘Tusk’. To make a long story short, I managed to get the roo on my second shot from arounf one hundred feet. I walked out into the paddock to ensure it was dead. There are humane ways to kill pests on the land – don’t get me started on shooting kangaroos because I will win the argument and I’ll wipe the floor with you.
When I took my Dad out to a shooting range to gun school for his birthday on Monday, I was really out of practice and so was he. Dad or Rosco as we call him, has amazing stories about living in the outback back in the day and some of them involve firearms. I’ve injected most of his stories into my novel set in 1973 outback Queensland because it’s always good to go to the source, like my mate Gordon Greber.
This morning was sub-arctic. Even Rosco – tough as nails – was feeling the chill. We were in a group of nine and we started on the pistols (two different calibres – the second obviously more powerful than the first). We both thought we’d fall in love with the pistols, but more gun-a-licious fun was to come …
^^ Friendly fire! I call this ‘you have awesome donor lungs and my friend needs a transplant – FREEZE!’
^^ Dirty Rosco.
^^ Smiling assassin … and yep – he’s still a crack shot.
We then moved onto the semi-automatics. We loaded the magazines ourselves, and away we went, moving to a higher calibre after ten shots. I was jubilant I’d brought my Mullum market gloves because it really was *that* cold.
^^ Don’t fuck with me.
BTW, I’m loving Rosco’s growing his hair. Why? Because he can. It’s very Wyatt Earp (I must get him some pomade …)
But it was the shotgun I had the most fun with when we were shooting at clay targets – one of which I actually smashed. It made me feel empowered and I jumped on my teacher, Lloyd and then the other whose name I can’t remember and he picked me up and twirled me around.
We had five rounds of these ^^ There was just enough recoil through the shoulder and jaw to get the adrenaline swirling. The photo below shows Lloyd, myself and another instructor. Tough as nails blokes who I’d love to interview for my novel.
We then moved on for the final activity – black powder pistol and rifle shooting. We had a tutorial where we listened to some incredible stories about the American Civil War and the firearms we were about to use. A tortuously sad period of history, but incredible all the same. The fictional outlaw Josey Wales carried seven of these on his person. One under his arm, two strapped to each ankle, two holstered to his side, one in the back of his trousers and one under his hat as he fired. On a horse. Now that’s multitasking.
We were shown how the powder is poured into five out of the six chambers, and then sealed with a paste made of olive oil and bees wax. It’s a process and a gentle one at that. An exercise in patience, if you will – meditative. These men are passionate about history and were more than happy to lend their ear for a chat about the variety of firearms we were shooting with. I fired an exceptionally powerful revolver – the sound and power shuddered through my chest and into to my spine, then down through my pelvis. For some reason it calmed me. Then I had five shots with a smaller calibre revolver, and as I discovered with the pistol shooting, wearing spectacles can be tricky to navigate. That’s my excuse for no bullseye, anyway …
Our team leader, Debbie was an über impressive lady and just gosh-darn-it lovely. She’s a crack shot with revolvers – that’s her weapon of choice. All the volunteers at the range were so hospitable and kind – they couldn’t do enough for you. When I was shooting the clay targets, I told Lloyd that I shake because of the anti-rejection medication I’m on (a lot of people think I’m nervous, but I’m far from it), so he gave me a couple of tips – about breathing, ironically – and I was set. Love your work, Lloyd.
If I was to describe in one word what it’s like when you’re handed a firearm of any kind, I would say ‘responsible.’ Guns kill people and people kill people – it’s a fact of life – and I’m grateful that the Howard government initiated the ‘buy back’ scheme after the Port Arthur massacre. It’s their greatest legacy by far.
Yes, holding and shooting firearms made me feel empowered and in control and a little bit tough, but you need to treat these weapons with the utmost respect. Yes, I want to get my gun licence – I have for many years. There are a couple of properties I go to where guns are used and I’d like to be a licensed and proficient shot. It’s a long process and so it should be, although it’s rarely registered gun owners who carry out acts of violence.
Shooting as a sport never made sense to me, but after today it does. It takes immense strength to hold a firearm and hold it steady for extended periods of time. I’m going to be a little tender tomorrow … in need of massage. Prepared to take any most offers at this stage …
If shooting was a sport at the Transplant Games, I’d be gold medalling the fuck out of life.
For Dad, his favourite activity was the .22 pistol and the .308 calibre of the semi-automatic. But being a Clint Eastwood aficionado, his heart lies with the black powder revolvers of old west and Civil War. For me, it was the twelve gauge shottie with the clay targets and the .308 calibre of the semi-automatic. Or maybe I developed grandfatherly emotions for Lloyd 🙂 Rosco and I had a beautiful day of bullets, mateship, high-fives and vast blue skies.
Far from being pacifists, both Dad and I are both lovers, not fighters, so I implore you to not confuse people who have a penchant for firearms as being pre-disposed to hatred or violence. It’s like putting me into a box where, because I love cars, I’m a dickhead on the road.
So while I connect with certain ‘blokey’ stuff, I meditate, drink gallons of tea, make a mean chai, and enjoy gentler pursuits like crocheting, tending my little rooftop garden, playing my harp, swimming and reading. Most of all, I’m kind, loving, spiritually and self aware, compassionate, and have an endless supply of love to give.
Below is my favourite photo from today. Happy Birthday, Dad. I love you ♥
There’s gunpowder under my fingernails, I can still taste the cordite on my tongue, and there’s SO much love in my heart ♥
You know that you’re dedicated ready to be committed when you’re writing a book and the following things happen. Things that don’t seem to perturb you, even though they should.
– you conduct all business from bed. Phone calls, emails, conference calls, interviews, reading coroners reports and court transcripts, skype sex or any sex for that matter.
– you realise that strawberry breaka’s are your poor man’s smack.
– you fly into a panic when there is no caffeine in the house.
– you think to yourself that the tiny spots of mould on those crumpets really aren’t that bad. You will just excise them with a knife, surgical style, as one would a melanoma.
– you don’t know what the weather is doing until you go to the BOM website.
– when midnight is ‘turning in early’.
– you feel guilty for reading fiction.
– you hold off on having a shower. For two days.
– you start writing a short story titled ‘Fuck you, you fucking fuck’, and end it there, because you’re happy you wrote anything at all.
– you write haiku for yourself.
– you begin to believe in astrology a little too much.
– you haven’t eaten vegetables in a week and look like you have scurvy.
– you go to the supermarket in your Ugg boots. While wearing your pyjama pants that you try to pass off as ‘leisure wear’.
I’m happy to say that this behaviour was when I was stuck in the hell that was ‘Jet’s Lore’ and that times have changed (aside from the supermarket in pj’s thing, because really – who gives a fuck in West End, anyway?)
These days I’m more than likely in the kitchen being a Vitaminx and blending all manner of veggies, clay and super greens into smithereens, drinking pots of tea, having early nights and early mornings, not watching t.v, trying my best to not eat wheat, but sometimes baked goods just make their way into my hands, mouth and belly … and though there are some days where I can barely breathe because of what I’m remembering and writing, I get out and about and cry in cafes instead of at my desk.
Apologies to Pear cafe and Blackstar, who had me as their poet in residence for six months; Avid Reader, Specialty Cup and that one place in Toowoomba where I lost my shit over brekkie last July on my solo sojourn to the Garden City. Blessed be that I had the Review section of The Australian to stuff in front of my face which I pretended to read so my fellow diners didn’t have to see my squished up crying and ‘looking-like-a-hog’ face. I’m very selective about where I do my public crying. It doesn’t happen often, and nor does private crying – about sadness, anyway. I cry often about joy and miracles and love and kindness. I weep for the magic that happens every day, because I did too much crying as a kid to lose any more tears over things that are sorrowful. Bring on the magic, I say and as Dallas Green affirms – ‘Bring me your love’ ♥