Tag: life

Oh my – we have a New Year IN our hands and it’s going to be radtastic!

Yesterday I turned thirty-nine – a stage of life I never thought I would or could ever reach from when I was was a little girl, to when I had my transplant and certainly after I survived cancer. Each year is such a gift, and age is a privilege.

Lungs in perfect working order for seventeen years? √

Cancer in remission for eight years? √

Two years clean? √

Haven’t lost my mind? √

Yesterday I made the drive down to my friend Nic’s farm after I’d caught up with my folks – the people who have helped shaped me into the person I am today. I love them SO HARD.

 

Once I got to the farm, an overwhelming sense of peace washed over me until Bert and Harry (N & B’s dog sons) greeted me with whipping tails, over eager paws and a whole lot of tongue. We celebrated my birthday and it was an afternoon and evening of oodles of love, laughter, joy, amazing gifts and spectacular food. In four words? It filled my cup.

I felt full. My soul was full. My belly was full. My spirit was full. Nic and Ben remember when I was stuck in that cycle of addiction, and now to see me free, happy and awake – truly awake – makes them feel pretty damn proud.

Last night, Nic gave me my gratitude stone for the year – a beautiful brecciated or ‘poppy’ jasper which will serve to protect and ground me for the year ahead, because according to Nic, it’s going to be a big one, and I am ready to shine like a fucking diamond.

My gratitude stone is mine and mine only and it is strikingly beautiful. At first I had mixed feelings because I’m not an avid fan of red, but with its base colour of deep rust which reminds me of the outback, and the gentle swirls of pink, cream, black and grey, I ventured inside this stone today during a meditation and it was a place of safety, healing and spiritual refuge. And rainbows! And we all know rainbows fucking rock.

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So why am I telling you about this? You see, Nicole has created a planner called the ‘Year of Me Planner’. Now, whether that’s manifesting energy, magical engagements or masterpiece enactment (all Nic’s words), it’s your opportunity to make the most of the energies of 2016.

I was lucky enough to receive the year long online course and planner to the ‘Year of Me’ from Nic for my birthday, and I just about hyperventilated with excitement. I’ve been working on it most of today and it has soothed my soul. The Year of Me Planner allows you to create your own map to connect to your intuition, intentions, power and purpose. Sounds a bit hippie? Whatever! I’m excited that it’s a little witchy and really fucking sensible. Here are the tools I’m using for 2016 … That’s right – oracle cards! I’m a hippie from way back …

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Nicole created this planner because she wants to help people plan, create and achieve their dreams with passion and precision. A one year online membership means that you’re part of a supportive online community with Nicole at the helm. It’s a beautiful safe space, and what people have shared today has been quite heartening and a little emotional. It’s only day one, and I’m feeling ALL THE THINGS. So here’s the link to her website and the Year of Me Planner. DO IT.

 

The bitter taste of defeat and failure

Always expect the unexpected. Be prepared like a girl scout without the rules (but with the cookies). That’s always been one of my life’s mottos. After taking my last ever dose of opiate antagonist therapy last Friday, I was relieved when I only had some minor restless limbs when I turned in for bed that evening. I had been on the lowest dose possible, so I couldn’t have predicted what was going to happen next. On Saturday night, I drove up the coast for a prawn fest and I lay awake all night. I only had a couple of ‘punches’, in that my arms went a little haywire and my legs were sore, but it was nothing I couldn’t handle.

I’ve always adhered to the adage that our hell is here on earth, and on Sunday night, that was very much the case. My legs were kicking uncontrollably, my arms were punching like I was in the ring with Danny Green (I would’ve been half a chance, too). Good old akathisia (restless legs) had consumed my muscles and seemingly, my bones. Even my chest was doing the pop and drop. At first I read about what I could do to alleviate the symptoms, but after a few hours I was in a really bad place. In fact, I was actually quite stricken. So much so that I nearly called paramedics.

I tried laying on the floor. I tried massaging my legs. I tried star jumps and jogging on the spot – which worked – until I stopped moving. I tried stretching. I swore – a lot – and then I cried. I cried with fear and frustration. Basically, if I had ben a crab I would have kicked my flesh out of my shell. Instead, I took a dose of buprenorphine, the very stuff I had just stopped taking, hoping it would calm my body and I’d stop kicking like a cocky prize fighter. Thankfully it did, but these decisions carry a cost. I felt like an abject failure. The last thing I was expecting (or wanting) to do was to ‘dose’ again, but it was all I could do after a few hours of kicking the shit out of the air and blankets and becoming increasingly distressed to the point where I actually thought it was going to kill me. I nearly called paramedics. I guess panic and great suffering will do that. Ah, the bitter taste of defeat.

After discussing some options with one of the pharmacists from the transplant team the next morning, I went to see my GP who was happy to prescribe me with a muscle relaxant, but we were also keen to try a more conservative approach of tonic water (for the quinine), epsom salts baths, magnesium therapy and then the muscle relaxants. A bath, coupled with Nina Simone soothed me greatly, and the quadruple therapy approach worked a treat. I slept. Not a single twitch. In fact, I woke up smiling.

But before I slept, I had to get the fuck over myself and my feelings of worthlessness and failure. My doctor laid my feelings of failure to rest after assuring me that I’d done incredibly well and that these things happen. They may be unexpected, but they happen.

I wish I could be far more noble and say that the suffering was worth it, but I can’t. Last night I managed to drop my dose of muscle relaxant which I see as a win, so I’ll aim to decrease the dose again this evening.

It’s awfully liberating having a full bottle of diazepam in my possession, and not feel at all inclined to abuse it. I actually couldn’t think of anything worse; those feelings of failure simply aren’t worth it. But I’ll tell you what IS.

Today I walked into the chemist I’ve been going to for just over two years where I saw my favourite pharm-boy for the last time at the ‘junkie counter’. Let’s call him D. D was so bloody happy that I’d been able to stop taking the medication and didn’t need any more for the rest of the year. I was officially off the books. Another lovely pharmacist who had dosed me a couple of weeks ago also passed on her congrats. D and I shared a big hug and we had a chat about Christmas. Hugs are better than drugs, people! I thought they’d be glad to see the back of me, but they asked me to pop in and say hello when I’m passing by. Here’s hoping the hugs are requisite with each visit.

I must extend my gratitude for being treated with respect and not as a person of failure and inadequacy who didn’t deserve kindness because of my addiction issues. The pharmacy I go to treats everyone with the respect they deserve, and I’ll never forget that kindness, compassion and how they never brought my dignity into question.

This evening I’m feeling less of a failure and more like a warrior; a survivor. I managed to do 95% of my Christmas shopping in record time yesterday and right now I’m working on a elegiac poem for a fellow poet and friend who died last year. I miss him. I miss his humour, his spirit and his ability to turn a few words into masterpieces. The tug of death was too strong for Matthew, and the world is a poorer place without his presence.

So I guess this is where I wish you all a Merry Christmas even though Christmas can be an incredibly challenging time of year for so many. My hope is that whatever you choose to do – or not do – makes you happy and settles your soul. This cover of The Boss’s ‘I’m on fire’ by Matt Andersen always moves me. Big love to all.

 

My summer of love

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

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

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

This calls for the following:

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

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

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

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

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

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

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

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

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

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

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

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

 

Eight years in remission – viva la vulva!

I never thought I would see another eight years. Really, I didn’t. After my cancer surgery in 2007, my oncologist was certain that more cancer would grow, that the surgery I had wouldn’t hold, and that I’d die. Thankfully that hasn’t happened, and today marks eight years since I underwent the surgery to save my life. The icing on the proverbial cake is that I’ve had no more cancer in my vulva (there’s that word again!). Viva la vulva, I say.

I find it quite incredible that in my immuno-compromised body, that I am still alive. And you know what? After what I went through with that surgery, I can hold my head high and say that I deserve it. If I never have to have life saving surgery ever again, it won’t be too soon.

Below are a couple of photos – the first being just before I started throwing massive seizures and went into a coma. Now, don’t I look fucking miserable here? Well, of course I was. I had a broken vagina which is enough to sink any woman. As well as my broken bits, I had skin grafts that possibly wouldn’t take, and a poo bag that had the tendency to explode several times a day. I clearly have a bowel obstruction in this photo – something that wasn’t picked up until too late – and by the next day, my family didn’t know if I was going to die or live out the rest of my days in a nursing home.

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As always, my sister was with me. Here she is standing over me in ICU, and just like when I had my transplant, my family played my favourite music, but even on the suggestion of my friend Kate, not even Axl Rose could rouse me out of this fix. Music seemed to be the only thing that would soothe me after both surgeries, especially during the long nights where everything seemed to go wrong. Think collapsed lungs, bleeding, broken beds (and not in a fun way), and uncontrollable pain. I am so grateful for the kindness of the nurses on the broken vagina ward.

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So what am I going to do to celebrate today? I’m going to embrace the ordinariness of life and start my Christmas baking. I did two practice runs last weekend with my very first fruitcakes and they were a hit. I ate the last slice last night with a cup of sweet, milky tea, but to tell you the truth, I gave most of it away to my folks. My old man is quite the human garbage disposal, and that’s where I get my deadly sweet tooth from. Today I’ll get all of my dried and glacé fruit and soak it in rum for the next month, then I’ll bake the cakes and ‘feed’ them with rum until my family can enjoy a slice or three on Christmas day with the requisite custard.

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I’ve never been much of a baker or decorator, so I was thrilled with how these turned out.

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And so that is how I will celebrate today. Eight years of so many experiences that have shaped me – and I suppose ‘baked’ me to a degree. And that’s ok, otherwise I wouldn’t be at this point in my life. I can honestly say that the view from here is fucking spectacular, thanks to my family, friends, doctors and of course, the choices I’ve made to get me here. Viva la vulva!

Happy Birthday, M

For M.E.B


We became another death

(the fulfilment of my internship).

Like a false syncope,

my grief would not let me claim you.



You came to me with bleeding gums and a dent in your jaw,

your broken gait like a barber cutting through

walls of plasticine with blunt scissors.

Bruised pride; your face a field of stubble I so loved jiving on my skin.

But first …



you were an uncertain algorithm of desire –

because you were never going to want me the way I wanted you.

Except, on a summer’s day, under umlauts of clouds, close to the border,

we pushed a kiss right through our chests like a bullet.

I was yours and you were mine and before we came up for air,

the earth had spun off its axis.



Purling into webs of light –

the softness of your cupped hands under my sunburned chin as we

tasted each other for the first time.

As salt danced across our skin, I ploughed my fingers through your hair

as clouds climbed behind us, then sunk with the sun like sabbath.



We cut our teeth on summer.

Sticky and wet like puppets of nature.

A curtain of devotion and great folly –

I grew attached to your shadow.

I’d fall off our bed of sin as you made me come to Bach,

and you would tell me stories of how you skulked up and down Cavill mall,

devout in your pilgrimage to find me on that first night at Schoolies.

You told me you would cry as you watched me sleep;

my childishly freckled cheek hemmed in by swathes of blonde hair.

You would wash your hands with such care in the darkness

(I liked to watch your panoptic palms somersault under tendrils of water)



You would drive along the rivers reach looking for me.

Once, I saw you.

I ran as fast as my body could with bleeding lungs,

but you never saw me.

I was jealous of the wind with its fingers in your hair.



Climbing lovingly into winter bones,

we knitted our bodies into an impenetrable pod where no one could touch us.

We shunned the world with aching hips and salty flesh

stuffing our mouths full, speaking a language only we knew –

believing ‘there is nothing else worth living for other than this’. You.



But I heard church bells pealing from promises that would bleed;

fistulas of memory fractured a fall and I began barking time;

howling spoonfuls of dirt into your mouth

your perfect fucking mouth

always open for mine;

a receptacle of love and all that was good in our world.

You tried.

You were unmoving in arresting us in that space as I jettisoned the indifference,

but we rolled away from each other as old mountains do,

and I began to not love us.



I garrotted you,

throwing you from your skin;

bones akimbo to the wind,

leaving a frayed man like a barometer of truth.

Fall in, fall out.

With the biting sick that bored into my body,

you were gone.



You never got to hear my new voice

or sweep the pads of your fingers over my new scars.

I can’t sing anymore, but my hair is long just as it was that first night you saw me

shuffling across blue linoleum in dimmed hospital corridors.

(I go out walking, after midnight, in the moonlight, just like we used to do.

I’m always walking after midnight, searching for you) 



Seeking out the ground with eyes I put to bed so many years ago,

I would give you my grace (or cleave the moon in two)

but you will not let me.

So I press my fingers into the rivulets of my palms

knowing we will meet when the streets glow in their silence.

Throbbing asphalt still hot from the burning day –

just like our first days of warm hands and cold feet.



Like a splintered shard of shrapnel that will always itch under my skin,

I will always be that woman who loves you.


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‘think of me when you sleep,

warm heart, cold feet.

In your dreams we will meet, 

together soft and deep.

Wish I could be there with you now,

all my love and desire. 

I think of you in despair

oh, when will I meet you there?

Not long, one more sleep,

think of me – warm heart, cold feet.’

– M.E.B 1995

This.

 

The day I met my donor

I never thought I’d do it. It’s been seventeen years, after all. And even if I did do it, I never believed it would be this hard.

Mum and I had talked for years about going into Births, Deaths and Marriages to see if we could find her, but today on my own, I went into a quiet room – so quiet the air had a tenderness about it – and scrolled slowly through a reel of microfilm until I found her.

Today I found my donor.

I have to say it again because it doesn’t feel real – I found my donor. 

I had always known the rudimentary details about her, but never her name or date of birth; her exact age or the the colour of her hair.

And now I know because today I ‘met’ her just for a little while. I even got to see a photograph and wow, is she exquisite. A brunette, with shades of red. I knew my donor was a brunette. Don’t ask me how – I just knew. She was married and we share the same initials when she still had her maiden name. She was twenty-two and we were born in the same year. Her name is unusual; I never would have guessed it. She was married. At twenty-two. And at twenty-two, she died.

Her funeral notice reads ‘tragically taken’. Because she was. She was taken from her family in the most tragic of circumstances in her apogee; her absolute prime.

But then she gave. Gave life to me and from what I understand, several other people.

I knew yesterday I was going to the library. Last night was, in spite or because of, the most restful sleep I’ve had in months.

This post is short because I’m crying rivers and trying to process something that is profound and so much bigger than me. The only trouble is that I’ve opened a door I’m not ready to close, but this shall do for today.

All I know is that she lives through me, and I through the wonder of her. Every breath honours you, C. I just hope that I have been enough, done enough, am enough.