My kingdom for more life for you

My friend lost a battle today with a futile dysfunction that had no place occupying her body and her blood. It seems leukaemia is a determined disease and at last it has won, but to what end, other than breaking the hearts of everyone who has ever had the good fortune to know my friend. 

For no good reason this purposeless disease has left three beautiful children and a husband lost, and a mother having to say goodbye to her daughter, and this one friend bewildered and shocked at a world without her in it. 

I am new to this, I’ve been lucky so far, everyone has got well again, even she was well for four extra years thanks to her sister’s bone marrow. But here we are, the world seeming upside down and back the front. So many have been through this and lived with it, and I dare say I will too, but it is surreal and wrong and I wish it were a bad, bad dream.  

Kim Edwards, 16th July 1966 - 6th January 2018

I want her back and I didnt even see her every day, I can’t even imagine her family’s pain if this is how I feel, but thus was the depth of her. I know everyone says when someone dies that we almost canonise them, but she was always angelic to me. She was patient and kind, and generous, so generous. She didn’t judge or hold grudges, she was different to most. She was an extraordinary human being. And I feel so honoured that I knew her, if only for twelve short years. And they were too short, but I treasure the memories, the pragmatic and open way she spoke. Her laugh, her huge heart and the way she coaxed you off the edge with a simple ‘right?’ at the end of her sentences, gently pushing you towards a smarter thought. Thoughts that came so naturally to her. 

I am angry though, so angry that they couldnt save her, that “they” didnt deem her acute, she was acute to us! She was so acute whoever didn’t think so, so acute to us St Vincent’s, and your b/s about not enough beds! And hey, you think she may have been acute now that she didnt make it? I know she wouldnt approve of me being mad, it was not her style, but I would fight for her if she’d let me, and I’ll fight now, I’ll rage against the universe that decided this was a person that’s time was up. 

But you did fight my darling friend, you fought so hard, and now you can rest. And I hope you were at peace as much as this nonsensical proposition could leave you with. I miss you so bad already and we live in different cities. But I always relied on your next visit, our next wine under fairy lights, or you sleeping on our couch and being gorgeous to my boys, as only you, in your natural confidence could. You were so comfortable in your own skin, you put everyone you met at ease in theirs, even 7 year old boys were taken with your charm. 

I would do anything to have been able to comfort you as you did me, and save you the way you saved me. O if only, if only I could have brushed the hair from your face and made it all go away. O what I would give, what we all would have given to give you more life. 

There are no more words that can describe the hole you have left my darling, beautiful friend, Kim. I will miss you forever, I love you. I will try to live in a way that honours you and the inspiration you have been to me and to so many. Rest now, rest. 

Update: I am riding 40km in gear Up Girl to raise money for the Leukaemia Foundation, would appreciate anything you can give to support: please donate here and stop this senseless disease: https://give.everydayhero.com/au/nicole-does-40km-gearup-girl

 

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The Problem with Mortality: Jim Stynes gone at 45

On the day of Jim Stynes state funeral an edited version of this post was published in the Tele

"All those moments lost in time...like tears in rain...time to die"

BladeRunner 1982

I’m not in to watching sport, in fact when my husband turns it on, daily that is, I go kind of mental and loudly threaten a 24 hour Jane Austen marathon until he changes the channel. But tonight the not so random Fox Sports channel specifically selected to watch a dedication to AFL legend Jim Stynes sent me a different kind of crazy. Tears streamed down my cheeks as I took in the loss of an obviously great man with a rare mix of humility, drive and amazing character. My heart broke as I imagined his wife and children facing a future without what was obviously the backbone of their reality gone. And as I saw the helplessness we all share when the enemy of our time rears it’s ugly head, to cut short another young life at only 45, it was almost too much.

Last year Sarah Watt died of Cancer, a month before her, Steve Jobs, weeks before that Gavin Larkin, a few months before that my cousin, and the list goes on like a morbid game of Chinese Whispers that leaves only grief and sadness in its wake.

We are surrounded by death, a day does not go by in which we are not confronted by mortality. Whether it be a car accident, a suicide bomb or an illness, the TV beams it to us daily. Not surprising really, given over 150,000 people die each day. What is surprising though is how we manage to ignore it, mainly because it is not our own and for years and hopefully whole life times we carve a path through life without looking death squarely in the eye. We live as if immortal.

Even when my Mother was diagnosed with Breast Cancer I managed to shelve the situation in the “she’ll be right” category of my brain and luckily she was. Today though my delusion is showing cracks and I don’t know whether it is maturity or just that the people threatened and dying now are peers, but my "eternal" existence is being challenged.

Jim, Steve and Sarah had children, so have I, they were happy, so am I, they were in their 40s, so am I, they were needed, so am I. There it is, the unfamiliar face of death taking someone my age, at my stage of life. It is despicable, wrong and absurd. But most of all it is insanely confronting.

It is an understatement to say I am not happy about this happening. The injustice of it is driving me quietly mad. I am sad and angry and desperate at this interruption to such brilliant existences. “It is NOT fair! this is not how it is meant to be” I scream as I try to return death back to its abstract box, miles away from me. But as I spin hopelessly in my new world without infinity, I realise I need a new way to look at this or I would be of no use to anybody.

Then I remembered what I had heard last year. When it became apparent that Steve Jobs was gravely ill, I watched his speech to Stanford graduates. It left me a blubbering mess then and compelled me to write about his life, but his words were like oxygen for those grieving his loss after he died and I so I share them again as we grieve again today for Jim Stynes:

“Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart…”

Steve Jobs, 2005

And when Jim Stynes was asked whether he thought what was happening to him was incredibly unjust he responded: 

“Life throws up challenges, life is unfair.
When you understand that, you can get on with your life”. 

Jim Stynes, 2010

He also admitted to being too busy to get a sizable lump on his back checked despite his wife urging him to go to the Doctor. Sound familiar? “Living” does gets in the way of life and if on the day we die we want to look back without regret, listening to those that have at last faced their own mortality is key. 

So maybe instead of seeing a seething monster when death reminds us it exists, we need to see a motivator with a light shining through our material and superficial trappings to our soul and heart. A filter that tears away the unimportant and uncovers what it is we want from our very finite life. 

Unfortunately these inspirational and wise words can’t reduce the intense pain of losing someone we love or the thought of our own self ceasing. But maybe if we accepted that one day our spirit will end with one final synapse firing in our brain. Maybe then and only then would we truly learn how to live, grateful for the things that matter, and looking for ways to find inner happiness and share it with those we love.

When life gets in the way and I forget what really matters I am going to stop and remember the great ones that don’t have the chances I have, to cherish their gorgeous family and friends and to stop sometimes and just be.

Ar dheis Dé go raibh a anam Jim Stynes

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BEAM ME UP SCOTTY! Another teleporting accident waiting to happen

For the last few weeks I've felt a bit like I'm being beamed up by Scotty but still haven't rematerialised anywhere, let alone the Starship Enterprise. So my material self is currently a sparkly set of atoms bouncing off each other in limbo waiting for Scotty to somehow re-organise them back in to something half way resembling the original version of me. 

Once I explain my current exploded self, it will make complete sense, of course (I am being sarcastic but sort of not at the same time) Firstly the loveliest of friends found out she had Breast Cancer, and is now suffering through Chemotherapy, I can't even start to explain what this has done to my heart let alone hers and her beautiful family's. Secondly I ended up in the paper smiling broadly in stark contrast to my what my insides look like and then writing for The Punch last week, so feeling a little out there and suddenly awkward/embarrassed which is a bit unexpected. And lastly I am preparing to return to work in January after what will be fifteen months of maternity leave. 

All these things in differing degrees are disturbing the rhythm of my life, which pretty much resembles that of a toddler's, seeing I'm hanging out with two of them most of the time. And if you haven't heard, toddlers LOVE a consistent schedule, marked by simple, repetitive things like eating and playing and sleeping. Either new Mums and toddlers have a lot in common or I am severely stunted because with all this ambiguity and sadness and exposure, the schedule is well and truly out the window. And there's a lot of screaming going on in my head that is tending to resemble my 14 month old's reaction to an overstay at the supermarket.

Fact: It is difficult to write when you're screaming, even if only on the inside. 

So I suppose this is a lame attempt to explain what I perceive as a negative change in the content of my blog and tweet stream of late. (BTW Hubby has banned the iPhone from our bedroom which doesn't really matter as my atomised brain is finding it tough to come up with any twitty banter that would see followers lunging for the retweet button. Because, of course, before I got involuntarily stuck in a Star Trek transporter that was happening all the time. These thoughts remind me of why my husband married me, that is for my calm and logical mind.) 

To steer this away from a list of excuses, let's just leave it as this is me trying to paint a little picture of where I'm at. It is not a particularly nice place, my stomach always seems to be churning just a tad and my usual equilibrium that enables me to share all manner of nonsense seems a little damaged. We have the best engineers from Star Trek working on re-assembling me in the correct way, that is my usual incorrect self, and hopefully some time soon you may see some stream of consciousness stuff spewing forth here - defining at last, my ideal life. 

P.S. Some trivia only the amazing Jenny "The Bloggess" Lawson may appreciate: William Shatner is the only person to have actually said the exact phrase "Beam me up Scotty" in the audio adaptation of his novel Star Trek: The Ashes of Eden. Now there's a great dinner party opener!

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