(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’

9 thoughts on “(dis)connection

  1. How can I not be so impressed, touched, changed by the words you share? They fly across the ether from your spirit to others, making impact, causing reflection and a great degree of empathy and understanding are the result.

    Thank you for your willingness to embrace life, every moment of it, with its light and shade, its colours, its sensuality, lusciousness and preciousness.

    I salute you in every way… and am so glad to have met you and continue to be able to chat with you. You’ve been blessed with much… and thus you give much!! THANK YOU… humbly inspired!

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    1. You just lifted my week, Bruce. You always do – I love your energy and passion! We were supposed it meet, my friend and I feel really bloody honoured to call you my mate.

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  2. Carly your writing always brings a certain quality and depth to the surface. You keep it real and raw and give us plenty to think about. I hope you are healing this week and getting back on track. Kath x

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