Tag: donor family

Transplanniversary, with a solar eclipse chaser

We all reach places in life. Crossroads, turning points, junctures, choices, decisions – even Rubicon moments. For me, after nineteen years, I’ve reached a place of happiness and peace having come into the quiet of my heart. I feel settled. Life is simple, so I’m going with the ease and grace of that.

I’ve done a lot of letting go since I did some deep spiritual work earlier in the year. Relationships, patterns, behaviours, concepts, survivor’s guilt … the list goes on. We all release shit as our lives evolve, and it just so happens that this has been the year to let go of shit that just doesn’t serve me anymore.

Last night, I did a solar eclipse meditation where I anchored myself to the ground, and drew in the energy of the stars, the sun and the moon, and plugged into cosmos. This morning, I released it. I splintered it into a trillion pieces so that soft shards of love went to every human, animal and plant. Then I made myself a cup of tea, and sat in the garden; the sun at my back, the wind brushing my skin, and the hum of bees and the prattle of birds in the peach tree.

There was no rush. Just the warmth of the sun above me, a hot cuppa in my hands, and two dogs that came to greet me after their breakfast.

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It’s hard to believe that as I write, this time nineteen years ago I was on life support in intensive care after having surgery for a double lung transplant. I very nearly croaked it, as my friend Nic would say, and over the years I’ve come far too close to dying more times than is comfortable.

Like last year, I’m going to mark this year’s Transplanniversary by having an otherwise ordinary day. There’ll be no celebration. Instead, there’ll be a silent commemoration for my donor and her family who I know are still grieving after nearly two decades. A family who will grieve for their daughter, sister, wife and friend until the end of time. That is something that is never lost on me. Not ever.

There’s so much grace and wonder in the every day, and we forget that it’s even there. We’re all guilty – focusing on shit that shouldn’t concern us, like what people think of us, our beliefs and values, how we look, how we should act, how to go about our business, life, relationships.

The older you get, the less attention you dedicate to what others think about how you should be living your life. You only get one, so my hard won advice is to gather yourself up and find the marvellous in the mundane (for some strange reason, doing laundry brings me unparalleled joy), and revel in the fact that after all these years, Dr. Seuss is still right – ‘today you are You, that is truer than true. There is no one alive who is Youer that You’.

So go and grab your beautiful, messy life by the vagina (they’re far more resilient than balls), and shape it into something you’d be proud to look back on either at the end of the day, or at the end of your life. In the end, the only thing that matters is the love you give, the love you share, and the love you get back. Oh, and be kind, compassionate and do your best to help other people. That’s the secret to true happiness. You can thank me later.

Endnote: My mum turns seventy next week. She has loved me, nurtured me, taught and guided me. She’s been the kindest, most loving and selfless mother a person could ever ask for. Yeah, I know – that’s a lot for a person to be, but she’s been all that and more. Jewel by name, and Jewel by nature. Also the bravest person I know. Love and kindness is the answer, people.

(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’