Tag: music

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.’

 

Song of the Week #4

I’m trying to birth a poem at the moment, and I need to get away from words. Last week, I had so much going on with my addiction post that I didn’t post Song of the Week number four. So, I’ve made it a goodie – ‘Samson’ by Russian singer Regina Spektor. Seriously, how did she get that song so perfect? How anyone can protest that this is one of the most beautiful songs on her 2002 album ‘Begin to Hope’ is beyond my comprehension.

My youngest nephew is a Sam. Not a Samson, but he may as well be because that’s what I often call him. Either that or ‘Sam-YOU-elle!’ Sammy was born a few weeks early, but that was enough to make him very sick. He had failure to thrive and had my sister not been a carrier of the CF gene, we would have suspected that he had Cystic Fibrosis. I’m sure my mum was transported back to when I was a baby where I struggled to put on weight, had constant chest infections and hospitalisations. When he was eight months old, baby Sam stopped eating and was losing weight quite rapidly. The only choice my sister was given was to feed him via a naso-gastic tube – a horrible thing for any parent to go through. I say parent, because thankfully he doesn’t remember having tubes forced up his nose when he’d rip them out as any baby would do. It’s certainly what I did. With a temerity and mother cub instinct, my sister managed to get through that and while that was really only the beginning of Sam’s health problems, on my sister’s birthday he suddenly began eating – the first thing he munched on being her birthday cake!

When he was three, Sam had been in a private hospital for his asthma for just short of a week and we he just wasn’t getting any better. The next thing, he’s literally dying in my sister’s arms. Sam was in acute respiratory arrest – a frightening shade of blue, his little chest sporting a huge cleave and he had to be brought back to life. I cannot imagine how terrifying that would have been for my sister. Not less than ten doctors worked on him for at least an hour and then he was transferred to the city’s best children’s hospital by the hospital’s head intensivist himself. Sam was placed in the Intensive Care Unit and I arrived to find him not intubated, which was a massive relief. For the next couple of days, he was under the watchful eye of ICU doctors and on bi-pap, a machine often used for CF’ers to force oxygen into the lungs. It’s essentially non-invasive intubation.

Sam eventually got better, but he still has terrifying asthmatic episodes. One day he can be running around like a maniac and the next, he’s in the back of an ambulance with sirens blaring, my sister terrified about the outcome. Now, because he’s awfully cute (all of my nephews are – coincidence they’re related to me? I think not), Sam has been don’t a lot of media – billboards in shopping centres, in ads, on radio and TV for the Royal Children’s Hospital Foundation (do you think I can find ANY of it?)

And so, this song always reminds me of Sam. The words ‘You are my sweetest downfall; I loved you first, I loved you first’, are words I’ve always associated with my nephew. We share a bond where both of us have been to the edge of life and back and we share an amazing spiritual connection. That’s all I’ll say.

The delicacy of this song is so exquisite and it’s just occurred to me that I’ve been selecting songs that are delicate, so I promise to mix it up with something with a little more robust next week. Maybe even something daggy, because I’m a bit of a dork. For me, ‘Samson’ has this ethereal quality with its piano trills and Spektor’s voice. This ballad is so striking in its simplicity and its shut up beauty and originality. It is the sweetest song on the album and for me, I think Spektor really found her form with this song.

A few years ago, I was lucky enough to see Regina Spektor live, and when I heard the first refrain from her piano, I cried with joy. Such an affecting song. And so I give you ‘Samson’.

Sammy and I even wardrobe coordinate …

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Sam and I a couple of years ago. We look a lot alike and I’ve been asked if he’s mine progeny, to which I say ‘he’s my nephew and I hold no responsibility as to what he may or may not do in your shop’ 😉

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Song of the Week #2

Nightswimming. It’s something I love to do and do often. Of a summers evening, I walk down to the pool to carry out my pre-bedtime routine of floating and dodgy aquatic tai chi to slow my mind and body. I’m not in for long – maybe ten or fifteen minutes – and then I run upstairs, get under a hot shower and plonk myself into bed.

As a song it fills my cup, and while I’ll spare you an exegesis on why I think this song is unparalleled in its sound and meaning (and one of the best songs of the 90s), I will say this – the lambency that comes from the circular rhythm of the piano, the uncluttered strings and Michael Stipe’s reeling voice has an immense power. Like last weeks song ‘Nightswimming’ has a sparsity about it and I’ve always found that when singing ballads, Stipe sounds as though he is almost mortally wounded which is strangely comforting.

Released in 1993, R.E.M was always going to be a pearler of a song thanks to a string arrangement by Led Zeppelin’s bassist John Paul Jones. Having JPJ at the helm is a no brainer for music gold and ‘Nightswimming‘ is proof of that.

There’s a sauntering innocence and simplicity about the words, yet there’s a great richness where every strike of a piano key and every draw of a bow across a cello lends itself to the power of the song. While there’s a myriad of theories surrounding what the song is about, for me it is representative of memory; of remembering an age of where innocence has been usurped by having to grow up too fast – a theme that certainly resonates with me. Its gentle restraint is an ideal song to reflect on life – past, present and future – and it’s a song that makes me stop what I’m doing and be present.

‘September’s coming soon, I’m pining for the moon.’

Ah, yes – always pining for the moon.

‘Nightswimming deserves a quiet night.’

Yes. Yes, it does.

Song of the Week #1

I listen to a lot of music. A LOT. Considering I spend so much of my time at my computer slaving writing, I’m often on the hunt for music that’s affecting and makes me break out in blankets of gooseflesh. I remember when I was about nineteen, my mum said that I listened to far too much melancholic music than was normal for a girl my age. Perhaps.

The Wilderness of Manitoba have a sound that’s reminiscent of Fleet Foxes, so I was always going to fall hard for them. Their song ‘Hermit‘ is off their first album ‘When you left the fire.’ I love the title because these words are sung so delicately during ‘Hermit’, and that’s the best way I can describe their sound – delicate. All the best art makes you feel something, and TWOM certainly make me feel all the things.

Today marks my inaugural ‘Song of the Week’ post. Each week, I’m going post a song, but here’s the thing – this might get daggy. Like really daggy. There might be some Daryl Braithwaite, John Denver or Player, so prepare yourselves. I’m going to share songs that mean something to me; where there’s a memory or sensory experience attached (or it could be that I just really fucking love a particular song). I’m also going answer a very simple criteria: Why does this song move me?

For this week’s song, it’s a combination of the lyrics, the harmonica, the cello (which appeals to my own bow brandishing days), and the harmonies. This song has a beautiful and unimpeded tenderness about it, and I’m all for a little tenderness. Or a lot. The sound is quite pared back – a little sparse, if you will – and it makes my bones ache in a ‘I want you close to me so I can wrap my legs around you and pash you all day’ kind of way. It’s that kind of song. It’s romantic and dreamy. Oh, and CELLO which is one of my favourite instruments. I played cello and piano for about seven years from primary and into high school and after my transplant I started taking lessons again with my old teacher. The feeling of bow to string is a hard one to slip from your memory; the mellow, sonorous sound travels through your body like a mood. Enjoy.

The week that was …

Last weekend saw me help shepherd my sister out of the shadows of a broken marriage and into freedom. Freedom from years and seasons of pain and sacrifice, and freedom born out of an indelible cost to her humanity and identity as a woman. A big group of people who love her ferried her out of her grief and into her new life on Saturday night where we celebrated into the night at a swanky bar in town. Having recognised the best thing about this ending is that there is now a new beginning that awaits her. That, and I have my sister back. Back to her maiden name and back to the person she was – not the broken, shackled woman she emerged as … there’s only so much I can share. We’re all little broken and our friends and families are the glue who build us back up to who we once were. That and love, of which she has in spades.

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But just when you think you’re getting on top of one thing, the wind changes and bowls you over. I noticed that my right nostril was a little sore when we were out, but didn’t think much of it until the next morning when I woke up a little swollen across the bridge of my nose. I hazarded a guess and thought I might have cellulitis – an infection in the skin – so I called my transplant consultant and he said to pack a bag and come to clinic the next day. It was a swift response once they saw me. After blood tests, I ended up having the worlds fastest sinus CT scan and was diagnosed with having septic sinuses. So yeah, a touch of septicaemia due to a slightly diabolical sinus infection (thanks Cystic Fibrosis – you just give, give, give …) I was taken up to ICU for a central venous (CV) line to be inserted into my jugular so powerful intravenous antibiotics could be started as soon as possible so the infection wouldn’t spread to my places like my eyes or my brain. Here was my view for the afternoon. Whoever invented the heated blanket box needs a Nobel prize.

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It was tough going. The doctor who performed the procedure was determined not to use a scalpel on my ‘soft and lovely’ skin, and because he had to push in 14cm of tubing through my skin and into my jugular vein, he pushed as though he was doing CPR on my collarbone. My chest was pushed into the bed so brutally and it really hurt me (there’s only so much local anaesthetic can do). While I was waiting for a bed on the ward, intravenous vancomycin and meropenem commenced. I’m also on oral ciprofloxacin because IV cipro totally incapacitates me and tears my gut to shreds.

I was in a lot of pain from my nose as well as having a tube shoved into my chest, so I was given some pain killers for the night. And it was one of those nights where I had a nurse who just should not have gone into nursing. On Tuesday, I woke up looking like I’d been in a cage fight and I now know what it feels like to have my nose broken. It’s really quite fucking excruciating and I have a newfound respect for boxers and other sportspeople who have their faces regularly rearranged. Here I am looking a little different to what I was on Saturday night …

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So I need sinus surgery and I need it soon. The last time I had surgery,  my ENT specialist said that they were scraping the base of my skull and that removing the actual infection (the snot) was like pulling out chewing gum.

And so the week went on. Yesterday was my graduation from my pastoral care training, but I was too ill to go. My beautiful group kept me updated with photos and videos which made me feel like I was with them. I was so disappointed not being with them as we officially became hospital chaplains, but when your body shuts down you have to listen (even if it is telling you to forget about your antibiotics, get in a taxi and go to your graduation).

The universe works in remarkable ways. I’ve always found that with pain comes great beauty. Thousands of words of poetry have poured out of me and I’ve come up with a humdinger of an idea for a poem that involves water. Of course.

After coming home today, and then having to return to hospital twice, the levy finally broke. Today was tough and I’m simply worn down from pain and the onslaught of infection in my body. My white cell count is up and the gravity of the week had me drowning. I think a little piece of me broke. I can’t even do a solid shit (and won’t for at least another ten days), I got my period yesterday, the skin where my CV line is is red and angry and my belly is bruised from clexane injections to prevent blood clots, so … I took a deep breath, put Xerxes, HWV 40: IV. Largo (Ombra mai fù) on repeat, had a long, restorative shower and redressed my CV line. This is how it looks sans adhesive dressing. The four stitches are to keep the line anchored so it doesn’t tear out of my jugular. Tears are optional.

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This week has left me feeling crestfallen. I got through the Harry Potter book where Dumbledore dies and the nurses looking after me thought I was howling in pain, but it was more existential – observational even. It’s odd because I’m so used to crying with joy – not immense sadness. Out of the mire of pain comes a stockpile of words – more than I even need, so after my blue moon ritual tonight I’ll hook myself up to my IV’s, put words down – both gently and ferociously – and feel safe in the knowledge that tomorrow is a new day.

sweet and sour lullabies

A long time ago, someone asked me why I write so prolifically about death.‘Why do you write about death all the time?’I could have appeased them; given a simple answer like, ‘write about what you know’, but I didn’t.I see dead people.

Not ghosts or spirits, but every day I see my friends, some of whom have been dead for fifteen, twenty years. Their presence has not faded with the passage of time. Instead, today – right here and now – they are more alive in death than they were earthbound. Memories bite and they bite hard. They cut through me like a bitter wind making it far more trying to forget than it is to remember.

Some days I feel like I am nursing the dead; ferrying them around with every thought and intention. Sometimes I invite them, other times they invite themselves, shadowing me.

They come with sleep.

When I wake, they stay with me; scattering my thoughts where my day is wrought with details – their rituals, clothes, smell, their cough and their laugh, their beliefs, the families they never wanted to leave behind. I am reminded of them with food, film, books, music. Especially music.

I wait to sleep again to fall into a different dream.

They can be all consuming; the people in them so real I can almost touch them. But I miss them instead. Some more than others, but I mourn them all the same. It’s as though a chunk of my childhood has died with these people and a cavernous hole has been cleaved into my history. Death is a physical experience for me because I feel a little emptier with each loss. I think everyone does.

There are mornings where I wake with my lips upturned from a sequence where Melinda and and I have squirted ampoules of saline into a sleeping Paul Greenfield’s crotch. He wakes in fright and embarrassment, then tells us to go and fuck ourselves. We laugh and Melinda turns blue, but we don’t care.

Others leave me feeling scattered; dislocated from other people and from the day itself. Are these dreams a platform between living and dying, or are they just memories worming through my sub-conscious, locked up in what we call a dream?

Maybe they’re nothing at all.

 

Red of hair, fair of heart, strong of spirit

I can’t tell you exactly what happened Thursday night. But I can tell you that I saw a friend take her last breath. A friend who is supposed to turn twenty-one in twelve days. I will write about everything, but I won’t be sharing it, because turning off your loved ones life support is one of the most horrific things you can ever do, and now I’ve been there twice when two families have experienced it. And once is already enough for a lifetime.

I can say that I was with a beautiful and spirited family as their daughter, sister, granddaughter, niece and friend passed from this life and into her next. It’s an incredibly intimate experience. So delicate. Being present for the family meeting with the Intensive Care specialist who tells you that your friend was declared brain-dead earlier during the day and that no, none of her organs can be used even though she so desperately wanted to be an organ and tissue donor because she had been a recipient of someone’s altruism and kindness in the same situation only a couple of years ago as family and friends prayed and listened over and over to Nickelback’s ‘Lullaby’.

I’m sitting with Tameah’s family and friends in a bubble of grief where everything is a blur. I know grief needs time to breathe, but it’s like breathing through a straw and running with your eyes closed not knowing what to do, what to say, where to go, how to feel or how to be. Everything is magnified and flush, but not. I feel everything and nothing. There is a feeling of a vague dislocation. Of being broken. Of being put back together. Of putting other people back together. But I realise that I’m not broken; my spine is just a little curved and in time, I will unfurl. We all will. Or maybe we won’t.

It was like this: The machines were turned off. My mind spun off into a web of white, then nothing. After the heat, there was peace, and I was sucked back to the bed, and the heat and the peace turned into pain. Once I am beside her, I dab the corner of her mouth with a tissue, brush back her perfectly ginger hair I told her to never, ever dye, and take her petichiaed hand. The nurse clips a lock of her hair and brings in a plate of pink paint, because she couldn’t find Tameah’s trademark purple. She is gentle and unhurried, and the three of us – the nurse, Tameah’s partner Ben and I – try to roll out the perfect finger print.

Ben and I walk to the elevator, heads down, faces downtrodden. The doors close and I ask, ‘what the fuck just happened?’ Ben shakes his head. Later, when we hop into the lift alone, the lift stops. We’re not moving, even though I’m madly pressing buttons. Tameah’s spirit is already at work. The lift doors open and we wander out into the night.

Afterwards, there are times when I say out loud, ‘No, Tameah, no,’ as though in a state of confusion. Odd times like in the ice cream aisle in the supermarket, but more often than not, on the toilet. Because like Melanie, like Ed – Tameah wasn’t supposed to die. And she wasn’t supposed to die like this. Not on life support. Not just before her 21st birthday where there were several gigantic surprises coming her way. Not when she was about to start photography college.

But back to ‘Lullaby’. Listen to the words. It’s a big, fat ‘FUCK YOU’ to something like Cystic Fibrosis, and so is surviving a double lung transplant. I remember Tameah and I at the Nickelback concert last year, where through a close friend’s friend, she got her wish to meet Nickelback. She apparently smiled for three weeks. Ended up in hospital the day after the concert, but smiled for three weeks anyway. That was the essence of Tameah.

When the piano was brought onto the stage, Tameah looked at me with a sense of urgency in her face and said, ‘Daniel … the piano … it has to be Lullaby!’, and when the piano began to trill, we embraced, smiled wildly and cried. She’d made it, and I’d made damn sure I’d delivered her to the front of the mosh pit which I’m so happy I did. If anyone knocked into her, out came the dagger eyes. If they kept knocking into her tiny frame after a few unfriendly stares, I had something to say.

Tameah was a photographer of spectacular talent and owned (and loved) many snakes, reptiles and other animals. I was never scared of snakes, but she made me love them. They’re beautiful, lean and friendly creatures that just want to slide through your fingers and cuddle you. This is Biscuit, Tameah’s lovely olive python giving me a hug at Prince Charles Hospital. You read right – Tameah would take her snakes into hospital with her. I’ve heard stories about them hanging from I.V poles and from squealing nurses. She always had a couple of bags of snakes with her.

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And her photography … breathtaking, in a beautiful way …

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And here is ‘Lullaby’ – Tameah’s song. The third day of October is here on in known as Tameah Woodford Day. Tomorrow, I’ll be going to the funeral home with Tameah’s Ben and her family where we will organise her funeral. I’m tired of negotiating death and coming out with such a raw deal, and watching others cross the same fire.