Donate Life, Writing for Life 2018

On Monday 30th July, at Warwick Senior High School the  Donate Life, Writing for Life 2018 competition was launched.
High school students around the state have been invited to “step into the minds” of someone affected by organ donation.

As a participating judge, and lung recipient, I asked to be part of the launch.

 

The full text of my speech follows:

Where did storytelling start? Historians have many theories, but most agree that storytelling has been part of human culture longer than the written word. Today, stories are an intrinsic part of human life. Books, movies, TV, music, how our news is reported, religion and of course our art, because the phrase a picture paints a thousand words is not meaningless. Stories are everywhere.

So why do stories play such an important part of society and culture today?

We use stories to understand and make sense of our world. Stories pass on wisdom to the next generation, they share and impart values, they teach us and allow us to walk in another’s footsteps. Stories do this more effectively than facts, because they engage our emotions as well as entertaining us.

Storytelling has a natural ebb and flow. The stories we read are akin to breathing in, and the stories we write are exhaled. As a writer, you need to step inside someone else’s shoes and examine their truths to find your story.

What better truth to explore via storytelling than organ donation? The United Network for Organ Sharing say that,

“Without the organ donor, there is no story, no hope, no transplant. But when there is an organ donor life springs from death, sorrow turns to hope and a terrible loss becomes a gift.”

To me, organ donation is a family, who on a dark day and in the midst of their own grief, say yes and consent to saving the lives of others. It is medical teams who work together to pull off miracles, to give someone without hope the opportunity to have a future. All to save the life of a stranger.

I say this to you, with borrowed breath, from borrowed lungs because seven years ago it was my life that was saved.

Seven years ago, I had three weeks left to live. I was in respiratory failure, my body succumbing to the war it had fought against Cystic Fibrosis. I was housebound, on oxygen, and I was dying. Despite this, I clung to life by my fingernails because I had hope. Hope that a family would say yes. Hope that this was not where my story was going to end.

To both the family that said yes and to the medical personnel that worked in the surgical theatre, I was a stranger. They didn’t know that I wanted to see my fifteen-year-old son grow up, that I wanted to hold a printed copy of my first book in my hands. They didn’t know that I hadn’t yet been to London, or Rome or that I wanted to see Loch Ness. They didn’t know that I had more books left to write, or that I hadn’t yet married the love of my life. But still, they saved my life.

Organ donation showcases the best of humanity, it is a gift that should be celebrated, and I can’t think of a better way to do so than in a story.

For the second year, I am honoured to be a judge for this important writing competition, to those of you who plan to enter, my advice is that the best storytelling touches the emotional heart of the subject. I wish you all good luck on your writing journeys and look forward to reading your entries.

 

 

You can find out more about the program on Donate Life’s website.

 

The Fluidity of Expiry Dates

After an ultrasound, the niggling pain in my upper arm now has a diagnosis.

I have degenerative calcification in my shoulder. As the name suggests, the degenerative part is due to age. Specifically middle-age.

I am officially middle-aged.

To some, middle age is seen as the start of end. The loss of youth. A thing to be feared.

“But then you turn 30. Oooohh, what happened there? Makes you sound like bad milk! He TURNED; we had to throw him out. There’s no fun now, you’re Just a sour-dumpling. What’s wrong? What’s changed?

You BECOME 21, you TURN 30, then you’re PUSHING 40. Whoa! Put on the brakes, it’s all slipping away. Before you know it, you REACH 50 and your dreams are gone.” – George Carlin

George Carlin’s views on aging are funny because for many people they speak the truth. Always one to march to the beat of my own drum, including the occasions when I’m out of time with myself, I’m delighted with middle age.

Because I’ve outlived my expiry date. I was not supposed to get ‘old’.

My expiry dates have been flexible and fluid, but nonetheless real. My mother was told that my chances of seeing thirteen were 50%. The median life expectancy of a person born with Cystic Fibrosis in the early 70’s was seven.

As medical technologies advanced, statistical probabilities changed as did median life expectancies. I saw the median life expectancy raised to fourteen, to twenty-one. Currently thirty-seven is the ‘doomsday’ number. Ironically, at thirty-seven I found myself in respiratory failure, with the clock ticking down in real time.

A transplant saw me cheat my way past that expiry date. A life-saving transplant which heralds a new set of statistical probabilities and expiry dates.

Yet, despite these facts and figures, here I am.

Still standing.

Still breathing.

So yes, I’m delighted to be middle-aged – even if that means I’m bringing a degenerative shoulder along to my party.

Ultrasound Images of my Degenerative Shoulder

Thank You Day 2017

This fortnight, I was fortunate to attend three special events – all of which are close to my heart.

Last week I spoke about WAYRBA (West Australian Young Readers’ Book Award) at a Library and Information Focused Training PD day for library staff on why I believe children’s choice awards are so important to encourage young people to read. In addition, for authors, a shortlisting on a children’s choice award is confirmation that their words have spoken to their target audience.

On Tuesday I attended the ‘Writing For Life 2017 Prize-giving Ceremony’ held by DonateLife WA and sponsored by DonorMate. I was one of three judges for the competition, alongside fellow SCBWI member Nadia L King and Brigid Lowry. It was a competition that I judged with both my writing hat, and as a transplant recipient.
For me, three entries stood out above the crowd. Not all of them won their categories, but all of them caused an emotional reaction – and that sometimes is more important than having a technically well written piece.
One of these, written from the perspective of a transplant recipient, contained a paragraph that perfectly summed up my own feelings. The other two were written from the perspective of a donor family member and both made me cry.

On Friday as a volunteer Role Model for Books In Homes, I spoke to the students at Majella Catholic Primary School during their Book Giving assembly about my lifelong love of books, and how I have made a career out of my love of reading, despite being told by high school guidance councillor that it simply wasn’t feasible. Thanks to the sponsor Mainfreight Australia, the students were each given three books to take home and treasure. It was an honour to be part of such a worthwhile program.

Seven years ago, the thought of having enough energy to simply attend these events, let alone speak would have been impossible. Seven years ago I was in Stage 1 Respiratory Failure and about to be listed on the transplant waitlist. Seven years ago, I could barely breathe let alone have enough spare breath to say a word or two without gasping.

At the 2016 DonateLife WA Honour Ceremony when asked what I would say to my donor family if I had the opportunity, I had this to say,
“The gift that results in a transplant is between strangers, but it is also a deeply personal gift, which makes the words thank you seem a little inadequate. It’s more than a physical gift – it also carries the opportunity to have a future, a second chance.
I will never meet or know the person who gave me this second chance, but I think about them every day.
So, to their family I would say, you made an important decision, one that made a great difference to my life and the best way I can show my gratitude is to take the best care of these wonderful lungs that you entrusted me with, to live life well and to the full.”

This past fortnight, I’ve shared my passion for both writing and reading and I hope that in some way I contributed to making a difference in someone’s life. Because making a difference fits my definition of living my life well and it’s the best way I can say Thank You.

Sunday 19th November 2017 is the national Thank You Day for Donor Families.