Category: cystic fibrosis

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 …

With a little help from my friends?

I don’t usually share fundraisers, and I don’t have any time for often vacuous fundraising campaigns, but this one is so far from vacuous, I don’t even know where to start. I’ve said time and time again that Cystic Fibrosis is a fucker of a disease. It takes everything both necessary and dear to you – your breath, your mobility, your dignity, and then your life. As I roll through life, it just keeps taking. The only thing it’s ever given me is an almost debilitating sense of fear.

So I’ll cut to the chase before I *totally* lose my shit.

I grew up with a lad called Matty Kidd. – one of those rough and tumble really good kids. We both loved metal, and even though he wasn’t in hospital too much growing up, he was one of those kids that left an impression. I was so surprised when Matty contacted me earlier this year. If I’m truthful, I’m always a little taken aback when a CF’er I haven’t heard from in a long time writes me or shows up at a funeral because the simple and brutal truth is that they’ve died – I just haven’t heard about it. The CF grapevine doesn’t work like it once did, because there’s only few of ‘old skool’ CF’ers left.

Matty’s partner Racheal had just given birth to a healthy son – he was a Dad! Matty sent me photos of him and his beautiful baby boy, and I cried tears of joy that Matty was still alive and that he now had a beautiful little family of his own. He’d been assessed for a double lung transplant, and while he had all the normal fears, he knew it was the best decision he could make for his young family.

Last week, Matty received his transplant but he suffered catastrophic complications shortly after and he died over the weekend. He leaves behind a shocked and bereft family and friends, and my beautiful friend Kate – also a double lung transplant recipient – has created a gofundme page. Ironically, Kate and I have rolled our eyes in the past at the entitlement of people who use crowdfunding for things that aren’t for something legitimate like medical expenses.

The reality is, Matty’s family need financial help as they plan his funeral, and to prepare for a future without their son, partner, father, brother and friend. I can’t even imagine having to face such a thing. If a potato salad can raise $55K on Kickstarter (I’m not even joking), then we can do better than $20K for real people. So I guess this is where I share the link. I’d be ever so grateful if you or anyone you know could donate to this worthy cause – https://www.gofundme.com/please-help-towards-jakes-future

Matty, you will be so desperately missed. Your memory will be kept alive for your little boy by everyone who was lucky enough to know you.

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Jake’s ‘birth day’
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Matty, with Jake and a PICC line in his arm to administer intravenous antibiotics.
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Rachael, Jake and Matty
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Father and son …

Transplanniversary, with a solar eclipse chaser

We all reach places in life. Crossroads, turning points, junctures, choices, decisions – even Rubicon moments. For me, after nineteen years, I’ve reached a place of happiness and peace having come into the quiet of my heart. I feel settled. Life is simple, so I’m going with the ease and grace of that.

I’ve done a lot of letting go since I did some deep spiritual work earlier in the year. Relationships, patterns, behaviours, concepts, survivor’s guilt … the list goes on. We all release shit as our lives evolve, and it just so happens that this has been the year to let go of shit that just doesn’t serve me anymore.

Last night, I did a solar eclipse meditation where I anchored myself to the ground, and drew in the energy of the stars, the sun and the moon, and plugged into cosmos. This morning, I released it. I splintered it into a trillion pieces so that soft shards of love went to every human, animal and plant. Then I made myself a cup of tea, and sat in the garden; the sun at my back, the wind brushing my skin, and the hum of bees and the prattle of birds in the peach tree.

There was no rush. Just the warmth of the sun above me, a hot cuppa in my hands, and two dogs that came to greet me after their breakfast.

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It’s hard to believe that as I write, this time nineteen years ago I was on life support in intensive care after having surgery for a double lung transplant. I very nearly croaked it, as my friend Nic would say, and over the years I’ve come far too close to dying more times than is comfortable.

Like last year, I’m going to mark this year’s Transplanniversary by having an otherwise ordinary day. There’ll be no celebration. Instead, there’ll be a silent commemoration for my donor and her family who I know are still grieving after nearly two decades. A family who will grieve for their daughter, sister, wife and friend until the end of time. That is something that is never lost on me. Not ever.

There’s so much grace and wonder in the every day, and we forget that it’s even there. We’re all guilty – focusing on shit that shouldn’t concern us, like what people think of us, our beliefs and values, how we look, how we should act, how to go about our business, life, relationships.

The older you get, the less attention you dedicate to what others think about how you should be living your life. You only get one, so my hard won advice is to gather yourself up and find the marvellous in the mundane (for some strange reason, doing laundry brings me unparalleled joy), and revel in the fact that after all these years, Dr. Seuss is still right – ‘today you are You, that is truer than true. There is no one alive who is Youer that You’.

So go and grab your beautiful, messy life by the vagina (they’re far more resilient than balls), and shape it into something you’d be proud to look back on either at the end of the day, or at the end of your life. In the end, the only thing that matters is the love you give, the love you share, and the love you get back. Oh, and be kind, compassionate and do your best to help other people. That’s the secret to true happiness. You can thank me later.

Endnote: My mum turns seventy next week. She has loved me, nurtured me, taught and guided me. She’s been the kindest, most loving and selfless mother a person could ever ask for. Yeah, I know – that’s a lot for a person to be, but she’s been all that and more. Jewel by name, and Jewel by nature. Also the bravest person I know. Love and kindness is the answer, people.

The Spirit of Things

For the last eighteen months, I’ve been on the organising committee for the 2017 Spiritual Care Australia conference, alongside three other incredible spiritual carers, Tanya, David and Pauline.

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Earlier in the month, the three day spiritual bonanza/lovefest was held on the Gold Coast where it was a resounding success (no, I’m not being biased – we kicked ass and totally killed it). We had extraordinary keynote speakers like Molly Carlile AKA the Deathtalker AKA current girl crush. I managed to score her autograph and a hug, which was like hugging an energetically super-charged sparrow.

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Good golly, Miss Molly!

I delivered a seminar about the duality of being a lifelong patient, and how that informs my work as a spiritual carer. Thanks Matt Glover for writing such lovely things about me! We’re going to miss you terribly as our EO, but our incoming EO Nalissa is also seriously fabulous.

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Thanks Matty G!

We were also lucky enough to have dementia advocate Christine Bryden speak. Her address was incredibly affecting, and she received a standing ovation. ABC broadcaster Rachael Kohn spoke about Spirituality in the 21st Century, and on the first afternoon, we had organised a death cafe to be facilitated by Dr. Ralph McConaghy who heads up the palliative care service at the Wesley Hospital in Brisbane (I think I’m just a little bit in love with him).

Afterwards, I was invited to be a part of a three person panel which saw some strong opinions, and me say the word ‘hell’ in front of 200 odd chaplains, pastoral carers and priests. I may have also talked about the importance of sex when a person is dying (I swear I didn’t start it). After the panel, I was approached by the etheral Rachael Kohn, who is this curly haired Canadian goddess, and she asked to interview me for her Radio National program ‘The Spirit of Things’. Of course I said yes, and the following morning, we sat in her hotel room and talked. Here’s the interview, and a few photos from the conference. It was exciting, exhausting, hilarious, illuminating and everything in between. I met some incredible people, and connected with some old friends.

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Queenslandahhhhhh!!!!
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Getting through conference was mind bending. My hardcore half a nip of whiskey on the first night had me all like #CHAPLAINSGONEWILD
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Being the teetotaller I am, I was DJ for the party post-dinner. I may not drink, but I was DRUNK ON POWER.

The day after conference, I drove back to Brisbane where I spoke at International Nurses Day at the P.A. I spoke about how the role of nursing has changed in my lifetime, and how nurses have impacted my life (where do I even start with that?). I threw in some scandalous interesting stories from when I was growing up, managed to lose four pages of my notes, but did well enough to remember most of what I wanted to say. After I spoke, I was one of two judges for the nurses talent quest, and I have to say HOLY SHIT – do we have some gifted nurses at the P.A (I’m not even being biased). Singers, Johnny Cash tribute bands, fiddle players, and the rest.

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I had initially titled my talk ‘HOW NURSES ARE FUCKING RAD’ but was politely asked to drop the profanity 🙂
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Nurse holding my hand between recovery and heading back to theatre when I had my transplant #somuchlove

I promptly went home, and fell into a coma.

The birth of my fourth decade

I’ve been thinking about my thirties. About how they started, and how they’re about to end. Ten years ago at my thirtieth birthday party, I was bloated from massive doses of steroids I’d had to have earlier in the year due to a serious respiratory virus. I was puffy faced and swollen, and going into my third decade, I was fat (for me, anyway. Or at least my face looked like a puffer fish).

For what it’s worth, I haven’t exactly loved my thirties. They started off on a bad note when I had to be treated for the early stages of vulvar cancer. My oncology team and I tried  to keep the cancer at bay with a topical chemotherapy, which would leave my vagina looking like I’d sat on a cheese grater and ridden it like a champ. I know – so glam.

In November 2007, I underwent surgery so the cancer didn’t travel into my lymph nodes and metastasise, which would have afforded me protracted suffering and death, and while the surgery saved my life, it left me teetering on the brink of death. I had a poo bag and a broken vagina pieced together with skin grafts, and I honestly don’t know how I got through three months of non-stop shit explosions and blistered skin from a stoma that refused to stick, but I did (thanks for all the late night laundry, Mum).

When I was 31, I got myself into a destructive relationship, and my boundaries with men were still pretty woeful when in my mid-thirties, a person I was seeing got into a fight and called me for help. I cleaned and dressed his wounds, after which he pissed in my bed. The next morning, he helped me move the mattress out onto my balcony, but left before I had to bring it in myself. I was on home IV’s at the time, and nearly popped my CV line out of my jugular.

My response was an almost ethereal calm, simply because not much fazes me. I thought, ‘hey, that’s ok – mattresses can be replaced.’ WHAT THE FUCKING FUCK, CARLY?! My response now would be entirely different, and for all intents and purposes, he should have bought me a new mattress (he didn’t). Now, I’d kick him to the kerb without a second thought, block his number, and never connect with him again. It was only then that a close friend began to teach me about boundaries, self-worth and self-respect. This friend has also helped me plug in to my intuition – something I’d struggled to get in tune with before. There was other stuff. My sister’s divorce and its ongoing aftermath has been confounding in its cruelty and acrimony.

All in all, I’ve learned my most powerful and empowering lessons in my third decade. Yes, my thirties saw its share of death, but through this came unexpected gifts. I discovered my true purpose and passion with wanting to care and advocate for the dying. I went to my first Spiritual Care Australia conference which opened up the world of hospital chaplaincy (I call it spiritual care), and in 2015, I graduated from my first unit of Clinical Pastoral Education. My CPE training was one of the most rewarding learning experiences of my life, and I’m now working at the city’s biggest trauma centre as their only non-religious spiritual carer – such a privilege and so incredibly humbling (if you ever want a lesson in humility, go and sit with people at the bedside, and listen). In 2016, I was asked to be on the organising committee for the 2017 Spiritual Care Australia conference, and I’ve been made to feel welcome by all faith groups.

In 2014, I was invited to speak at TEDx Brisbane where I  shared my story and my hopes for how we can do death differently and how we must do death differently. After seventeen years, I discovered who my donor is/was after realising that I needed to know about her, even though I’ve had information about her since just after my transplant.

I have been lucky enough to work and learn with the best people in the death care industry, I did my first Vipassana, let go of my survivors guilt, and got clean. I’ve been clean for three years, and honestly can’t think of anything worse than taking opiates again. In fact, you’d have to render me unconscious to get any narcotic into my system.

On Christmas Eve, I was accepted into the Karuna Hospice Palliative Care Support Volunteer training program – an intensive I’ve been dreaming of doing for many years. It’s as though the world is opening up for me, and for that I sit in a space of deep gratitude. Transplanniversaries came and went, but never without much introspection and indebtedness.

I discovered what I needed to keep and what I needed to let go. I realised that just because I have a history with a person, that it doesn’t mean I have a present or a future with them. I know what ingredients help make me my best self, and I’m clear in my purpose. I’m settled, happy, and in love with giving zero fucks about what anyone may or may not think of me.

So why is that? It’s because I’m done with not being and living as my authentic, no-bullshit self. I was done with that a time ago, but as 2016 and this decade comes to a close, having lived with so much uncertainty, I am certain of one thing – life is beautiful, and all that matters in the end is the love you share and the love you get.

My wish for you, going into 2017, is that you embrace the simple things, because these too have been my greatest lessons. Go and hug trees, howl at the moon naked, walk in the rain (naked again), take less and give more, love yourself, treat others with kindness and suspend your judgment. Own your shit, be accountable, tread lightly upon the earth, and as my dear friend Andy who died last month waiting for a transplant would say, ‘don’t be a cunt’. Life is short – paint it your shade of spectacular.

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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.

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A love letter to my lungs on this, your eighteenth birthday

Tonight as the waning moon floats between shelves of cloud – the stars liquid and alive – I will whisper, ‘I am still here.’ A bittersweet offering, but one I cast into the world as a call to arms.

With each passing year, I harvest guilt, siphoning off grief as I pick the fruit and plant more seeds for the following year. As I stand under the beating sun, I divine my contrition and cast myself as an apostate, as a modern heretic; nothing but a taker. These aren’t empty postulations. In fact, they are very real, for I’ve watched most of my friends die, and I watch now as others are dying as they wait for a donor that may never come. I should be dead, and be dead many times over, but I am not. Thoughts like these catch my untrammelled breath, lodging like a barbed pip in my throat.

When I listed myself on New Year’s Day, I wasn’t ready for you because I was afraid, but I soon became too sick to evaluate the risk. You kept your first caretaker – a beautiful redhead – breathing for twenty-two years. Yes, I know who you came from. That door was opened long ago, and it is one that can never be closed, never mind how hard I push. For 234 days I was tethered to oxygen tubing like Major Tom on a space walk, until I was cut loose and given new breath.

I think of my family, my friends and my lover in footholds of despair as we braced for the most terrifying, yet exciting news of my life. Then comes the horrible realisation that one family has had to say goodbye to a daughter, sister, wife and friend, while I was given a chance to resurface. It is a notion that can sink a person even with the best of intentions to live.

I have imagined my surgery thousands of times over – of being sliced under my breasts from armpit to armpit, my sternum and ribs lifted so surgeons could drop their fists into my chest to pull out my native lungs – sticky masses, black and Lilliputian, like little lung caricatures. My lungs are curtly dropped into a plastic bucket, and then the magic happens: you’re plucked from your watery grave of preservation solution, slippery as a placenta. Busy hands usher you into my empty thoracic cavity in a highly choreographed animation of fingers, clamps, retractors, clips, wire and sutures.

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Native lung.

Twelve years on I was still tweezing the ends of old suture that had pushed their way to the surface of my skin, as though wanting amnesty from my beating heart. I would look at these tiny black slivers of silk under a magnifying glass and confide, ‘you’re a part of me’, keeping them until I felt strong enough to let them go. Closing my eyes, I would blow them away, never to be seen or touched again. Another part of me gone; my life in a perpetual state of mourning.

I don’t know why I am still alive. Is it luck or chance or something to do with planets aligning? Is it compliance? Am I one of the lucky ones whose immune system is unusually strong, or were you and I such a perfect and indomitable match, that failure was never an option? It’s impossible to say.

I have my doubts that we will be here in another 18 years, although my doctors assure me that there isn’t any reason why I won’t. There may come a time where I need a third set of lungs, but I hope that’s not the case because I’ve grown rather fond of you. In fact, I loved you from the start, even though you tried to kill me.

When you think about it, we’ve had an odd relationship. Where I shook the hand of death, you peeled me away from the death grip I was beginning to see as a friend. The first fortnight, we fought bitterly. I rejected you, or perhaps it was a mutual renunciation. Whatever the case, it was an education in terror and pain we both swiftly learned from, and we never fucked with rejection again.

That’s not to say we’ve haven’t had our fair share of shit. Cancer wasn’t one iota of fun, and you’ve gifted me lungfuls of air when I’ve sobbed through seemingly impenetrable sadness.

The scar under which you lay is now a pale pink seam of refuge, like still water beneath a bridge.

I love all five lobes of you equally, and I will always be your biggest champion. That you must know. Every year, just before (y)our transplanniversary, the weals of scar that have hardened into runes on my trunk begin to itch. I scratch, but it is so far beneath my skin that it cannot be touched. When ‘the itch’ presents, it’s as though you are trying to tell me something. It never fails to make sense, but not before I have scratched my skin until my breasts and that tender seam of scar are raw and streaked with blood.

I acknowledge that my life date is your first caretaker’s death date. The day she died, I returned to life, and ever since I have been making my way all slipshod through a special kind of purgatory. I needed to suffer before I felt worthy enough to commemorate my new life with you, and for many years, I have marked this day timidly, humbly and with a quiet voice. Maybe next year will be different.

And so today, there was no grand celebration. I chose to commemorate you and your original caretaker the best way I know how – by living my life. I enjoyed an ordinary day at work, because I’ve long preferred the beauty of the ordinary, because within that realm of normality, that’s where I chance upon the extraordinary. Ordinary doesn’t have to be mundane or insipid. That I can get out of bed, feed and dress myself, pull on my boots, go to work, and walk around the hospital visiting patients (an ironic reflection of my own life), double back to the bookstore, have a coffee and share a meal with my family is a day meaningfully and well lived.

Tonight I will light you a candle. The flame will thicken in the cool winter air, and I will give myself pause. I’ll sit on my balcony as a retrospective of the last eighteen years  plays across grey hems of cloud, and then I will go to bed with a grateful heart.

Last month when I was beach combing, I found a miniature set of you. Two lungs, the structures of a heart and even the intricate plumbing of the carina of trachea. I held it against my ear and my ears filled with the gentle rush of waves pitching over pebbles.

I listen to you. There’s rarely a rumble. You have held the line and kept me anchored to this life and for that, I owe you everything.

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