Tag: ferociousness

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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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.

(dis)connection

Yesterday was all about disconnection. After having another high-ish white cell count and another blood result that can be indicative of infection, rejection (it’s not rejection) or inflammation, my IV antibiotics were ceased because I’ve pretty much had all my body can take. Because it’s been two weeks, my CV line also had to be pulled. After two weeks they’re a high infection risk and the last thing I need is an infection in my heart. As you will see in the photo below, the site was starting to look quite red and angry, so I’m more than happy that it’s laying somewhere in medical waste. Although I’m still quite tired, I’m fairly sure it’s been the antibiotics that have been making me so dreadfully ill so I’m hoping to be firing on all cylinders by next week. I’m half tempted to go to the Ekka – a place I haven’t been since before my transplant. I have this craving to be unnerved and shaken back into life by something that spins me upside down. I need to do something unnerving – and soon.

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Here’s the catheter that was inside my jug-jug-jugular for two weeks. See the gunk? Eww.

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And here is my neck after my transplant nurse Margaret cut the stitches free and pulled out the line. It’s a little tender, and today there’s some bruising with my neck looking as though I’ve come off second best in a tussle with Edward from Twatlight. 

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The first thing I did when I got home was have a long, hot shower. It was neck-gasmic. But ever since Sunday, I’ve been thinking about my friend Sean because Sunday marked a year since he died. I felt his presence all day – even before it registered that it was the anniversary of his death. I wrote about the sacred time I got to spend with Sean just before he died here.

As the Kurt Vonnegut refrain flies, ‘so it goes’ … It will be seventeen years since my transplant on the twenty-second of this month. August is a time that is always tinged with a soupy mix of gratitude, survivors guilt and reluctant celebration. The transplant experience is  confounding in its conflux of emotion, though my mind feels so indelibly clear right now. My motivations have this seemingly robust lucidity about them because there is so much essence of spirit that’s driving my lived experience. 

But strands of thoughts loop across to my donor who I know was and is, always will be a girl in her early twenties. I know her age and how she died. I am not supposed to know, but I do.

Because we were so close in age, I find myself mulling over what she may have been doing this time seventeen years ago. Was she studying? Was she working? Was she happy? Was she listening to Jeff Buckley over and over like I was? What book was she reading, if any at all? Was she in love? Was she in that good, hard, impenetrable love I was in all those years ago? Had she fought with anyone? Was this day – today – a good day for her?

I will always wonder. You cannot have another persons lungs inside you and not be wild with curiosity and a little restlessness. I read about cellular transference and memory, and meditate about her family who I know selflessly donated all of their daughter’s organs. I wonder about how many of us are still left walking around with a piece of this girl inside of us? I’ll always be grateful, but I’ll always feel the familiar pull of sadness. If I didn’t, I’d question my own humanity. There is a storm about to roll across the city, so here is a collection of words I wrote long ago about what it’s like to ‘get the call’.

The night before transplant is …

bittersweet, pallid, rainy, painful and skittish

fearful and scattered from misplaced thoughts and morphine

full of heavy hearts and high hopes

stung by drunk boys and crying girls

the irony of chain smoking friends/father/sister

being hugged so tight by Tammy it hurts

stern faces, etched with what may not come to pass

red lights that have been run in the rush to get to the hospital

hope

waiting

thinking about dying on the table

asking my parents and my sister about my donor and their family: who is it/is it a boy or a girl/ how old are they/what happened/why are they brain dead/will I ever know?

stained by paradox

never far from my mind

saying goodbye with the hope of saying ‘hello, I love you’

Autopsy of a marriage

Thrumming away from each other like broken mountains,

by your second year, you had been excommunicated.

Wrought by the passage of God, your clipped speech and ruddy cheeks

made it hurt to be alive.

 

Her dowry – platelets swimming under skin and a fertile womb.

Yours – a cellar of wine and an insistent mother whose teat you never could retire.

At one time you were fleshy hips and languid tongues,

begging eyes and fast of foot across the floor.

 

With a God she could never swallow, nor your stewed kicks –

pissing on tyres your watermark

only to lurch into clarion cries of cocky rapture.

Days of wine and roses capsized into nights

of swollen heads and an ugly mouth.

 

Now foreheads cowl in fury –

screaming at divorce lawyers who bathe in the blood of your children,

you’ve learnt how to torch yourself with mediators papers –

slack words spilling from the moorings of your mouth

with cataracts of guilt you will never feel.

Being woken at the gates of heaven

Candy in a bag –

recollections of a need

when my mind was an unswept room,

my body a husk, full of holes so thick

I thought I would leak.


Needles in my bedside drawer,

ampoules ready to be

snapped off at the yellow line –

that crisp and thrilling pop.


No greater satisfaction,

nor ever surpassed.

Then the plunge of a needle

into flesh, digging down into muscle.


The other night, my body stockpiled opiates.

Nurses artfully depressed a syringe of Narcan

to bail me out of a deep unbreathing.

Two breaths a minute – my lazy lungs.

Nurses in a U shape around my bed –

‘you’re having some trouble breathing, love.’

Hell, I was between worlds dreaming about

tangerines and the biting aroma

of vodka, parcels and angels milk.

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Monday blues

After not feeling too well throughout the week, I had a magical day on Friday. It was my bestie Bec’s birthday, where her husband whipped up some amazing coffee and birthday morning tea treats for us very lucky ladies. There were happy children, friends who I hadn’t seen in a long time (I even met one of their children for the first time) and everyone was just really happy to be there. People are generally happier when they’re surrounded by Bec 🙂 I’m always happier when I’m around Bec.

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I stayed until the afternoon, then went to meet my Mum for a post-outback emergency pedicure. I’m always happier when I’m with my Mum, too. We make each other laugh and I missed her when I was away. I was also slated to George-sit Friday night, because his owner had a funeral and subsequent wake to attend of a very close friend.

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Since I’ve been back, things have been a little off-kilter. I’ve had a couple of days where I’ve battled mountains of pain. I returned to Brisbane happy, calm and relatively stress-free (even though I didn’t want to leave), but since my return, I’ve had some shocking and devastating news from a friend and by six o’clock Friday night, I was in the grasp of one of the nastiest migraines I’ve ever had the displeasure of experiencing. A migraine which was made that much worse when I ended up with a stomach bug chaser …

In 2004, I had a surgery to stop me from aspirating (vomiting) into my lungs. Had I not had the surgery, I’d be dead from O.B. It was an amazing pick up from the Lung Transplant team. Also, It was a reasonably painful procedure (the surgeon said it would be painless. Next time I’ll ask them if they’ve had it done) called a Nissen fundoplication. Trust me – there’s nothing fun about it, especially when you need it done multiple times as a mate of mine has done, because the surgeons just can’t seem to get it right. Luckily for me, all I ended up with was a mild case of pneumonia, but the surgery to ‘switch off my reflux reflex’ (that’s how I explain it to non-medical people) worked well. And by well, I mean super well. As in ‘I CANNOT EVEN BRING UP ONE MIL OF SPEW’ well. I haven’t been able to throw up since, and while it’s possibly saved me a lot of money in cab clean-up fares over the years, when you’re desperately ill from either food poisoning (last year), or a stomach bug (last Friday night), all you want to do is SPEW. And spew I did. Well, a little. I’ll spare you the photo (yep, I photographed it to show my doctor), even though I’m damn proud of how much I managed to bring up. But here was the crux – because I was heaving so violently, the pain in my head just wouldn’t shift. I took all the pain killers I possibly could and was wiped out for two days from exhaustion. I seriously thought I was going to vomit my brains out. Or at least my eyes. By Saturday morning I was resembling George the Pug, who thankfully was taken from my care before I completely sissied out.

Yesterday, my entire trunk was aching from all the heaving I’d done Friday night/Saturday morning. I’m still sore today. I look … disgusting. I couldn’t move my body yesterday – or cough or laugh or sneeze – because of the resultant post-spew pain. My head is an oil slick and my skin looks sallow. Looking back, I really should have gone to hospital to get rehydrated on Saturday, but I like to handle these things of my own accord and in a controlled environment. If anything, I should have gone to hospital for more pain relief, but I’m fairly certain I would have felt worse, because, yep … that’s right … controlled environment etc.

I spent the day yesterday ‘liking’ LOVING all of my sisters photos of Paris on insta-spam and trying to absolve myself of not having showered for two days. Today I made it out of my place downstairs for a coffee, and it was glorious. Old jeans, a singlet with no bra, Birkenstocks and grease-ball hair where I was greeted by hugs and more coffee. I should go and have my left hand x-rayed, because it probably really is broken if it’s still ridiculously sore after two weeks post-fall.

I’ve been gentle on myself today, keeping in mind that it can always be worse, just like it is for my friend who shared their shocking story with me over the weekend (when I wasn’t wrapped around the toilet bowl), beseeching my return to the city and asking, why did I have to come back?’ Oh, that’s right – I DIDN’T. Every time I come back to the city, I feel a little more lost. It feels like a solid country drought since I’ve been away, and all I want to do is go back – which I am, but not soon enough. Things and people are uncomplicated where I go, though there are often harsh reminders when you’re working the land for a living.

Is it so wrong I just want to see some cows in mustering context again? I mean, really – just look at them. They’re smart and adorable. So un-humanlike. Better than a bowl of hard-won spew, even.

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