Tag: childhood

Endings, beginnings …

A few months ago, I was driving to see a client, and as I always do when I’m on the Inner City Bypass, I quickly looked to my left where the Royal Children’s Hospital is. Or I should say, was. When I’d finished my shift, I drove back to the Royal, parked my car and got as close as I could to the site. I cried big, ugly tears, and had to take some deep breaths to ground myself. I took some photos and spoke to one of the traffic guys about my time in there.

Going back was not about burying my suffering. It was about bearing witness to the destruction of what had been my second home. That might sound hyperbolic, but it’s where I did half my growing up. It’s hard for people to grasp that I spent nearly half my life in hospital before I had my transplant. It’s about being there, grounding myself in the suffering that is still with me – the suffering that will always be a part of me, and when it comes to that suffering I’m not broken or stronger for it. I just am.

I don’t live in the past. I AM my past. It’s like that saying, ‘you don’t have a soul. You have a body. You are a soul.’ 

Just when you think you’ve released all the guilt, there’s a dark corner of me that feels I need to be there to pay penance for having survived when most of my friends did not. Sound stupid? Try living it.

This place is sacred ground for me and so many others. There were so many first and final moments on that land. I fell in love for the first time there and I never believed the time would come when such a place was torn apart piece by piece. The state government made that decision years ago when Anna Bligh decided to entertain her vanity project of a children’s hospital in South Brisbane because Brisbane had a perfectly good hospital and infrastructure at Herston because: politics. I can see the new children’s hospital from the place I’ve left (it’s revolting, just in case you were wondering), and I remember the uproar in the medical fraternity when the idea was initially tabled, both with doctors and patients.

Back in the 90s, I was in hospital for much of the construction of the ‘new’ hospital (the one that’s been demolished), and I also happened to be an inpatient when the Deen Brothers demolished the old hospital. If you live in Brisbane, you’ll know that the Deen Brothers were the go to guys who knocked down iconic landmarks such as Cloudland and the Bellevue Hotel under our despotic Joh Bjeilke-Peterson dictatorship. Under Joh, they demolished much of Brisbane’s beautiful heritage buildings from the 1970s and beyond, often under the cloak of darkness and surprise.

And so the Deen Brothers were given the job to demo the old red brick hospital buildings in 1993, and I was a fierce sixteen year old who took shit from no one so it was nothing for me to jimmy open a window so I could yell at the Deen Brothers ‘you heretic c*nts!’. I’d shout until I was literally blue, my face covered in the dust of my past, present and future. I’d do this as many times as I could during the day when I wasn’t studying or having treatment. I would rage and cry, and punch the glass separating me from so many years of pain and suffering. I would wait until they met my eye (because they would) and I’d rage and cry, and give them the finger. They must have thought I was a mad little girl, but they  were just doing a job. Maybe I was doing mine, and the job of so many souls who had gone before me in those buildings.

The one image that brought me to my knees was when the kitchen being ripped out – the timber splitting like kindling, and the terrazzo floors being smashed. I wanted to throw myself on the ruins of that building and die with it. I was sixteen and I was in a constant state of grief. Heavy, sodden grief.

I’ve often said that I don’t live with regrets, and that I live with lessons instead. But I do have one regret. I wish I’d got some bolt cutters to break into the old Adelaide Billing ward before it was levelled. I feel that regret in my marrow, and I have a recurring dream where I can’t get into the ward. But there’s another dream happening where I’m right there, seeing myself not being able to get into the ward. Sometimes I get in without the bolt cutters. The double doors open up slowly, and I can feel the cool, polished terrazzo under my feet.

I still have nightmares about its old lift that shake me awake, and leave me unable to get back to sleep. They’re cyclical, and after a watched the hospital being torn down, I had more recurrent dreams about trying to get into the old Adelaide Billing doors.

But with every ending, there’s always a beginning. The day before Christmas, I moved into my new house, and I’m beyond besotted. I can see the stars every night, there are trees as far as the eye can see, the birds sing to me every morning, and I think I have an owl after finding a feather from a Powerful Owl, which is curious because I asked for an owl to look over me at the beginning of the year. Sometimes life is funny like that.

And so, I’ll cast my attention to this new beginning with fairy dens, banana palms, owls, native hibiscus and old, thickly rooted jasmine. And yes, my new place has terrazzo floors …

Ch-Ch-Ch-Chaaaaaanges

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

exactly