Tag: friendship

The trouble with ‘cures’

My good friend, writing peer and all round genuinely awesome woman, Carly Findlay has today written for Daily Life about her experience with false cures and how, at the end of the day, she doesn’t want to be cured of her rare and painful skin condition Ichthyosis. Like Carly, I’ve never wanted to be cured from Cystic Fibrosis. I’ve wanted to be free of it, which is different to a cure, but this dis-ease has shaped me into the person I am today and I’m proud of my ability to survive against often insurmountable odds. For The Two Carlys (like The Two Ronnies, but hotter), life is a gift.

Carly was kind enough to ask my opinion about how the lure of false hope can be a soul destroying experience – not only for the person suffering from an illness, but for their families and friends. You can read Carly’s article HERE and her blog can be found HERE where she writes prolifically about disability rights, appearance diversity, her personal battles and victories, and other very important issues, including her impending wedding – YAY!

Here is a photo of us taken last year when we met in Melbourne. It had been a long time coming. We share far more than our names.

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New year pastoral

Loose udders and mucus plugs

signals new life on the grass and clods of dirt.

Lilies dance on water the way flies hover over fresh meat.

A heifer drops its snout into the trough to drink –

not greedily, but more delicately,

sucking on the water in a docile way – fickle for a beast.


Pebbles, clumps of wild grass and cow shit

pattern a track to the paddock where a sabre calf

feasts on the berm of the grid;

lifts its head, turns towards its tail, then stares at me.


Unsteady of his feet, he ambles to his mother

her cries echoing through the valley –

carrying that sound like some heavy burden.

From the verandah, I hear the shaking of wooden spoons in pots.

It’s time for breakfast – sweet, sticky black rice.

Ronn Moss and the launch of my website!

Last week was an incredibly exciting week. I launched my website with no fanfare which you can see here. I am so grateful to my friend Lynn from Lynn Priestley Design. She is a dear friend and an amazing artist, and without her help, as I perhaps said in an earlier post, my website would have looked like an online morgue. Thank you, Lynn!

On Friday night, a loose wild group of women and I went to see Player Ronn Moss and his fellow band members, like legend Peter Beckett, who are über famous for their hit song Baby Come Back. Listen to it and I dare you to not be moved.

I decided to wear a slashed to the navel bodysuit with my thriller from Camilla skirt. It’s always interesting how people look at you and well … judge. All of the men seemed to smile and say g’day (you don’t say!), but most of the women looked at me like I had my tits out was a lepper. I’m of the opinion, if you haven’t got it or even if you have (I haven’t), you may as well flaunt it. So I did, sans Hollywood tape. And it’s a good thing I wore what I did, because when I put my hand up during Ronn’s repartee/question time, he pointed at me and said ‘the girl the in white top’, and I got to stand up in my teetering heels and ask my question!

So don’t be judgy. I’m not judging you if you’re 75+ and wearing a short strapless dress and are trying to pash Ronn – good for you! But back to my question, because I can just feel it that you’re dying to know what I asked Ronn. Que? My question was along the lines of if there was any other television series he could be in, what would it be. He immediately said Game of Thrones. Then I snuck in a cheeky second question about Breaking Bad and we pretty much both agreed that it’s the best ever series EVER.

And so with that, we dashed to the front of the stage not long after the band began to play, where we were given the stink eye and a few harsh words by some vicious grannies in the front row. We were just lucky they didn’t bring their knitting needles or we would have been STABBED. I was waiting for them to throw their dentures at us …

Here are a couple of photos of myself, my gorgeous friend Rebecca and RONN. Notice how she is ‘peacing out’ on our bellies? If I had nails like that, I’d do that too 🙂 I got to give Ronn a hug and I can say he hugs you tight, is devilishly handsome, very calm, gentle and authentic. Bucket list item – CHECK!

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New website coming! *cue hysteria & excitement*

It’s true! I’m creating a super gorgeous website with my dear friend and superstar graphic designer Lynn from Lynn Priestley Design. Go there! It’s been a dream to work with Lynn – had I done this alone, my website would look like something resembling a virtual morgue.

We’ve been able to spend some quality time together with her two pups, Charlie Moo-Moo and Sambhu Canine 🙂 We’ve had adventures at the beach in Sandgate, ate our own body weight in calamari, laughed our asses off, sworn a lot, cried and Reverie-harped together. I am really fucking blessed.

Check out my website here in a week or so and it should be live! Exciting times!

 

Another angel at my table

I am, right now, stuck in that stinking, mephitic mire that is grief. It is as though I am cemented to the one place. Just about everything hurts, and just about everything makes me cry. Some photographs arrived in my inbox around lunchtime, and that mallet of sorrow swung a blow so hard that I lost my breath. Tonight, my eyelids are heavy, and the circles under them tomorrow will make my face look overcast and I will feel bone cold despite the spring. I am finding that optimism is just one more step into fear, and that I am a heavy peg that just doesn’t want to fit.

On Friday morning, I’m getting out of the city for a few days to celebrate the birthday of one of my best friends. This time last year I was in Barcaldine and Nic and her husband were about to join me at the cattle station I was staying, where they got to meet my friend Meagan’s family. Meagan died from CF in May 1999. Her ashes lay in a granite boulder at the family homestead under a weeping willow, and I’m looking forward to getting back out before too long, for it is always too long between visits.

I haven’t written for some time, and in that time, one of my oldest friends has died from Cystic Fibrosis. I am yet to work out whether Sean is number sixty-nine or seventy, but I know that he would have preferred to be sixty-nine because he was a dirty bastard.

About ten days before I went down to Melbourne to see Sean, we had an incredible two hour conversation. I was taken aback by his energy. He was enjoying having his family at home with him before he went to the hospice where he would die. We talked about our fuck tonne of dead friends (because there is a fuck tonne); about his greatest loves, all of who had CF and had died long ago, and what we used to get up to as kids. He said that after all the friends we’d lost, he’d always wanted just one sign. ‘Just one person to come back so I know that there’s more to this. Just one person so I know they’re there’, he said. I told him about the visit I had from our friend Rachel Murphy when I was around six. He was stunned – and a little pissed off, I think. He just wanted there to be something. Just not nothing. I told him there was something; he was still very unsure.

When I got to Melbourne, my dear friend Camille picked me up from the airport. It was a Sunday, so we headed to a homely and hipster little place where we sat by a booming fire. Cam has also had a double lung transplant, and we shared an afternoon of secret women’s business by that fire. We CACKED ourselves silly for a couple of hours and both enjoyed some highly diabetic-unfriendly food.

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By the time we got back to her place, it was night time so I thought it best I call Sean’s sister, Shannon. She asked if I could get there as soon as I could? He was fading fast and wasn’t expected to see through the night after having been put on a morphine pump that day. We had about a forty minute drive ahead of us, but it was Sunday – the traffic was light, but Cam still ran a red light did some quality organ donor driving while I willed Sean not to leave me without getting to say goodbye.

‘You’d better not fucking die on me’, I kept saying. ‘Don’t you fucking dare.’

We reached the hospice where I was met by Shannon’s husband, Troy. There were a few close friends and family in the waiting area who had spent some time with Sean, and Shannon basically pushed me into the room and said to spend as long as I needed. I walked into the darkened room. His breathing was fucked. I knew he was fucked. His mouth was open. I sat beside him and stroked his hair. I said quietly, ‘Hey Seany. It’s me, Carly. I’m here, sweetie. I made it.’ Not immediately, but after I’d said his name a few times and given his head a rub, he started to wake up. He said my name, and I just kept saying, ‘I’m here, I’m here mate. I love you.’ 

And then he began to talk. We talked about sex and politics; he said the entire front bench were useless, with which I agreed. Then, holding my hand he said, ‘Everyone’s here. Everyone’s here and they’re looking at you.’ He’d got what he wanted. A sign, if you will, and what a crowded sign it would have been. All of our friends, his early loves Rachel, Carolyn, and Leanne and his last great love, Veronica. I looked up and whispered, ‘Hi’ to acknowledge our friends who had surrounded us. I felt them there. The air was buzzing with an energy I’ve only experienced a few times in my life, and I silently thanked them for being there to ferry Sean on his way.

His sister Shannon and his friend Kate came in, and we had a Baileys. Sean wanted a Baileys coffee, so I gently placed a palm behind his head and encircled the other around the cup, which he swiftly brushed away, determined to drink it himself, HIS way. And here’s where I understood why. Here was a man – a real man – who had so desperately wanted to die with dignity. And to die with speed. I spent some more time with him, got the nurse to give him more pain relief, then left thinking that by the time I got to him the following morning, he’d be gone, or very close to. He told me he was happy, and I said I’d see him in the morning. Our last words were, ‘I love you’ – the best anyone could hope for. Camille drove us home and we had cuddles on the couch with her dog until just before midnight.

I didn’t sleep. My head may have felt like a medicine ball, but I was still in the room with my friend – and all of our friends. My body was buzzing with pings of energy, and I could see sparks firing off my skin in the dark.

*

When I arrived at the hospice the next morning, Sean was sitting up in bed, fully cognisant (think intelligent, rude and witty) and eating. He had not long ceased taking all of his medication and wasn’t having any artificial feeding so he could control his dying process and make it as short as possible. It was now I began to wonder how fast it would be if he was still eating and fuelling his body. When you’ve grown up surrounded by dying, and  dying and death is your vocation, you tend to ponder about things like this. He ate his entire lunch; even closely inspecting the viscosity of the pumpkin soup. It was then I realised that he needed more morphine and a relaxant to make him more comfortable. The nurses agreed. I know the trajectory of a CF death like the topography of my own breasts, and so he was given a higher dose and by the time I left later that afternoon, he was quite sedated.

Not long after lunch, we were introduced to a lovely lady who was taking photos for the hospice who were updating their website. We were so grateful for the fortuity and relief it provided for those of us who were in the room. Sean had never been camera shy. Below is one shot that Sean’s brother-in-law took while we were snuggling. He cracked dirty jokes and grabbed my ass 😉 For someone who’s dying, I think he looks fucking spectacular.

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When the shots from the photographer popped into my inbox today, I proceeded to completely lose my shit, particularly over this one, because I feel as though he is  comforting me, when I should have been comforting him. 

the comforter being comforted

Sean never regained consciousness and died just after midnight on Saturday 9th August. I was able to see him one more time, but by this stage he was deep in the warmth of a CF coma. It surprised and upset me that it took him so long to die. What didn’t upset or surprise me was that he wanted to die alone. He didn’t want anyone seeing his last breaths. As usual, but most importantly and as he wanted, Sean was in full control.

Over the last couple of weeks, I’ve come to learn more about Sean than he had ever told me. Mostly because he was modest and we were too busy trying to outdo each other with dirty jokes. He was one of Stanford University’s ‘who’s who’ – an invitation only club of great minds from around the world. Doctors and professors spoke at his funeral in Melbourne, and on the 23rd August, we had a memorial for Sean’s Brisbane family and friends, so this was to be my first time as a celebrant.

I had been doing well up until I sat down for the photo montage that Sean’s sister Shannon had put together. When I saw the photos of his transplant recovery, I was fine. And then all of a sudden I wasn’t. I walked back to the lectern and expressed my excitement, happiness and cherished relief that Sean had received his second chance just seven days after I had received mine. The day before Sean’s memorial marked sixteen years since I had my transplant. I had felt strange for having celebrated it, and then guilty because I wasn’t celebrating and I was alive and Sean was not. I took a sharp intake of breath to seal off any more tears, but the levy broke and a rush of tears descended, which would have been awful for everyone there because I look like a drowned hog when I cry.

I’ll always remember Sean as the tall, skinny, lanky kid who grew up too fast, simply because of our illness and his place in life. I also hadn’t known how much he had suffered at the hands of bullies in school. I wanted to scream when I heard his brother speak of this. I wanted to know every last asshole who had teased or tried to fight him. I was enraged and devastated that this had happened to my friend and I began to feel indignant with the world. Why did this have to happen to Sean? I will never understand. Suffice to say, kids will be kids. And kids can be assholes.

And so here I am. Anchored to grief. In fact, my skin stings from it. The hurt trickles into every crack and it permeates every cell of your being. You physically hurt. You ache. It’s like ripping yourself off narcotics when you’re addicted. I thought I was prepared and now I don’t know how to go on, except that I have to. I have study to do, a body to nurture, books to write, a soul to feed, family and friends. I can’t help but feel like an empty vessel. But then I think about those who aren’t even close to treading water – the sinking stones of this world. I want to pick them up, but can’t. I’m in the water with them, but they’re out of my reach.

And you know what? Sean would be PISSED OFF. He may have wanted people to be sad, but not like this.

See ya later …

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photo taken Christmas 2012.

We arrived to a heaving, sweating sea of purple – Tameah’s signature colour. There were hugs, tears, taps on the shoulder and it was lovely to see some old friends like Tameah’s great mate Lucas, who now lives in Melbourne. Earlier this morning, I had a call from Tameah’s Dad asking me if I knew anyone who lived in Fortitude Valley, as Tameah’s nose ring was at the police station. I’m not far from the city, so I drove to the cop shop where I watched a lady behind the glass do a whole lot of paperwork. Finally, I had the precious cargo in my hands, which I gave to the ‘white lady’ as soon as I arrived at the chapel. And just to give you some idea as to how much Tameah was and will always be loved – it was standing room only.

It was a strange occurrence for me, because I don’t do funerals. I don’t do funerals because I physically and emotionally can’t. I’ve been to dozens, and most of them have been my C.F friends who were taken far too young. By my own admission, I haven’t been to a funeral in at least eight years, just because I can’t. I’ve missed close friends official farewells, but I’m not one to believe you need to go to a funeral to say goodbye. I have my own little ritual for that. But today – right now – I had to be there for Rodney, Leanne and Tameah’s brother Jordyn. I had to be there for Aunt Wendy and her family, for Nan and Pop and her partner Ben, who only lost his own father three weeks ago. I was nervous, but once there, felt relieved. When we were seated, Ben’s cover of ‘Lullaby’ rippled through the chapel with such tenderness.  A beautiful tribute to the love of his life.

The service itself was lovely, and after it was over, something really cool happened. We all walked outside and there were purple balloons for her nearest and dearest to write on. Nickelback’s ‘Burn it to the Ground’ blared from the chapel as we wrote messages on the balloons (I shared a balloon with Tracy, Brandon and Robbie), and we started singing lyrics like ‘that shit makes me bat shit crazy’, and I was tapping my heels into the grass – as was Tameah’s dad Rodney – singing along to the ultimate Nickelback concert song. Tracy and I had a laugh as we sang more dirty lyrics, and I remembered going ‘bat shit crazy’ with Tameah when they finally played this song at the concert last year.

We released the balloons, hugged it out with Lucas, Tracy, Brandon and Robbie (and a myriad of other people), then we made our way out the back for refreshments (yes, there was cake, in all of its diabetic unfriendliness) and other yummies. I saw some people with CF I hadn’t seen in more than a decade and exchanged hugs with lots of friends and family. I was glad to be there.

People go to funerals for many reasons, and today, some came to say goodbye, and others came to say, ‘see ya later’. Wherever she is, Tameah is keeping the drinks cold, with a rare albino snake draped around her neck and has the remote for the sound system in her hand. I hope she’s getting to know some of my old friends like Melanie, Ed, Melinda (now they’d be thick as thieves) and even Ineka. Tameah was such a gentle, but stubborn soul, so maybe she could get Ineka to love snakes too. I have sixty-five friends who have now died from C.F, so she’s surrounded by the best people she’s going to meet in her limbo-like state where she’ll stay until the right soul is ready to bring her back to earth – most likely in the form of a snake …

As Nickelback sings, ‘the drum beat carries on.’ Yes, it does …

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Me, Rodney, Leanne and Tameah at Nickelback last year :) Such a happy night where Rodders got me back onto bourbon while Leanne and Tameah were backstage meeting the band.

‘You’ve gotta live every single day

like it’s the only one – what if tomorrow never comes?

Don’t let it slip away – 

could be our only one, you know it’s only just begun.

Every single day, may be our only one,

what if tomorrow never comes?’

And that’s how we should live – like there is no tomorrow (with reason). There are no guarantees in life and very few certainties. Live and love wildly, say yes to what you want, say no to what you don’t. And always remember to breathe.

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.