Breathing in life in silence

Today is a gift. Every day is a gift. But today is a year since I did Vipassana – a ten-day silent meditation ‘retreat’, which also means it’s one year since my friend Camille had her double lung transplant. It was a strange day. On my way up the Sunshine Coast, I popped a postcard in the post box which contained messages of the ilk of ‘let’s get some lungs SOON!!’. Sure enough, Camille had been hauled into the Alfred down in Melbourne to see if she was a proper match for the donor lungs they had available.

Just as she went to theatre, I had to switch off and hand in my mobile phone for the ten days, and I had no idea whether Camille had survived or not. I had a wonderful teacher at vipassana, and a few days later, she asked for me so that she could tell me that my mum had called to let me know that Cam had survived her surgery. With so much compassion already in my heart, I smiled, placed my hands in prayer position, said thank you and wept. Compassion and gratitude filled my heart to nearly bursting, and I slept so well that evening after discourse and final meditation. As much as I didn’t want to leave on the last day, I was looking forward to finding out the details of Cam’s surgery and she certainly had not had an easy run. Transplant can reduce you to a shell of the person you once were.

I can’t begin to describe how physically and mentally the entire transplant process is – from initially going on the list, to waiting and then finding out that there are donor lungs available only to be told that it’s a false alarm. It is stupendously taxing. In fact, I still fumble for the words to describe how difficult it is, and they rarely come easily.

Everyone wants to live; everyone wants to survive. People like myself and Cam go through the emotional wringer of putting ourselves on a wait list that can reach into months and even years, but we do it because we want to see our nephews grow up, we want to surround ourselves with our family and friends, and we want to be happy while we’re in a kind of health space that we’ve never enjoyed before. Cam has packed more into one year than you or I could in three. Happy ‘Lungaversary’*, Cam! I hope to celebrate one with you sometime soon, or at least a cuppa and a hike when I’m next in Melbourne. This is Cam’s company and website where you can buy her beautiful creations. She’s a clever kitten.

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This morning, my friend David put it up on FaceCrack that it was his Transplanniversary* today. Nine years of ups and downs, but he’s still here, enjoying every day and showing his donor and their family respect, dignity, joy and gratitude by living and being a happy, balanced being – and a clown, no less.

I was in hospital when Dave became critically ill at a speed I had never seen and haven’t seen since. I remember at night, we would watch the tennis, having all manner of dirty typically C.F conversations. But within a couple of days, Dave started to rest more. Then he had trouble walking. I would see him trying to make his way down the hall and he was incredibly breathless. And then he never came out of his room again. Within three to four days, Dave had gone from a man with a bad chest infection to the end of his life. He was dying.

Dave was on bi-pap therapy, and I believe the day was a Saturday. His family priest was called and he was given the last rites. But then something miraculous happened. The word ‘miracle’ is bandied around a lot, but there simply is no other explanation. With less than an hour to live, donor lungs had been found for my mate. I remember a flurry of activity and a small army of people outside his room when I left the ward that day so I could have some respite from hospital.

I ran into Dave’s mum in the hall outside the ward as I was leaving. I hadn’t heard a whisper that the doctors had found a possible match, so I gave her a hug because we were both crying, and we knew what for. I whispered that Dave was in my prayers (the whole family was, including Dave’s identical twin brother who was also extremely crook and on the transplant list). She knew that I was shocked and sorry about Dave’s steep decline and what seemed his imminent death. No words needed to be said. The line of tears staining our cheeks, the touch of a hand and a hug. There was no doubt about it – Dave was going to die within the hour. How awful it is when there is but one certainty; one firm truth.

But because of a selfless family’s decision to donate their loved ones organs, today David is a happily married man who makes his living as a clown with his twin brother, Peter who also had a double lung transplant. Tragically, the twins lost their sister Tonya many years ago to Cystic Fibrosis. It really is an illness that cannot be ignored, let alone underestimated.

Peebo and Dagwood are magnificent clowns. They don’t even scare me, which is also miraculous because I haaaaaaaaate clowns due to traumatic childhood memories of them.

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And so, three monumental things in one day. Two lives literally revived, given hope, breath and ultimately LIFE. Another great thing that happened today, was that I went back to my place after being looked after at my folks for a week due to a lung infection I have. I went into hospital last Thursday, had a central line inserted into my jugular, spent the night, then went back to Mum and Dad’s the following day where I slept for 20 hours a day for the first three days I was there. These drugs can be worse than chemo. Here’s a piece I wrote last year about how these treatments can make me feel. What they take out of me before they give back. It hurts.

Here are a couple of photos with hideously boring captions.

Um, hello? Is that a scalpel, or are you just pleased to see me? Unfortunately, it was a scalpel.

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Stitching and bitching all the way to pain cake land …

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Oh, HAI!

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Something to make you feel less nauseated. Oh, wait! #sorrynotsorry

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12 thoughts on “Breathing in life in silence

  1. Such an amazing and unforgettable day and a total honour to share the date with Dave. Transplant is such an amazing thing and it’s quite indescribable to anyone who hasn’t been through it. So grateful for my donor and their family today, and my lovely transplant friends. Can’t wait til we can actually meet in real life xox

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    1. It is SUCH an honour – perhaps the biggest – to receive a transplant. All the pain, the shit, the meltdowns —> all worth it 🙂 I can’t wait to meet too! I might have to come to Melbs for uni stuff this year, so fingers crossed! I hope you’ve had a lovely day and that you’ve been kind to yourself xoxo

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      1. In totally serendipitous timing, my boss asked me today to go to Brissy at the end of this month. We have to organise a catch up!

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  2. You are one hellava of a spunky inspirational chickadee….love your honesty, the rawness in your words and I can tangibly feel the BIG heartful love that you are. Big Love to U…and your fellow travellers on the journey with you…XO

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  3. Oh Carly, what a moving post! There is probably a Donor’s Day or month or??? But if not, I think Valentine’s Day would be a great time to acknowledge all the truly amazing families who have made the best tribute they could for those who they have had to say goodbye to by letting a part of their loved one go on giving LIFE! That is LOVE!

    XOXOXO

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    1. Thank you so much, Lea 🙂 Australia has ‘Donate Life’ week, which has just been, but I do like your idea about Valentines Day. Life IS love – you’re so right!! xoxo

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  4. Just beautiful. I remember the day Cam had her transplant – the awfully long wait to hear that she was out of surgery reminded me she (and you) would have felt every day you were on that transplant list.
    I celebrated her lungiversary on Thursday, out for dinner. It was a beautiful night. We toasted to her lungiversary and to her donor.

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    1. Thanks Carly. It’s such a ride we’re on – and it’s a ride for our family and friends, too. There’s no saying when it’ll slow down, just has it has done for me of late, or speed up, which it’s about to do! I look so forward to meeting you and Cam one day xoxo

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