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.

Yallingup 2017

I’m a firm believer in finding your tribe – that group of people where you are accepted and supported. I’m fortunate in many ways, I have several tribes. My oldest tribe is my Cystic Fibrosis family. There is no one who understands me quite like my CF family. After my transplant, my CF tribe had a subtribe — those of us who’d also undergone a double lung transplant.

Lately I’ve been expanding that subtribe into a tribe all of its own. Most contact between transplant patients occurs in a hospital setting – which is why the WA Branch of Transplant Australia actively offers all of its members opportunities to get together in a variety of social settings, including representing WA at the Australian Transplant Games. So I joined the committee to assist with community engagement, and in particular education within schools.

The most recent social event organised by the committee was the 2017 Getaway at Yallingup, a weekend which caters for both recipients and their family. It kicked off with Welcome get-together with nibbles at Caves House in Yallingup on the Friday evening. This was a chance to mingle, for some to catch up with old friends, and for some like me on their first getaway, to meet new friends.

Saturday was a free day, so Jarryn and I took the opportunity to explore the area. We started with the Ngiligi Cave.

Ngiligi Cave – thanks to the wonderful lungs that I have guardianship of I had no trouble breathing in the depths of the cave

After lunch I put my methodical maze cracking skills to the test in a race to reach all four towers in order before Jarryn did. All was going to plan as I reached Towers 1 and 2 in order and before my boy, however I missed the trick door to Tower 3 and skipped ahead to Tower 4. By the time I backtracked to Tower 3 and missed the trick door multiple times Jarryn had made it to Towers 3 & 4 for the win.

Methodical Maze cracking does not work with trick doors.

Sunday was Game Day in Bunker Bay. I didn’t do so well at Archery … or Petanque. (Let’s face it unless there is a reading challenge at the Transplant Games I’m not likely to attend in the near future). Game Day was followed up by a sit down dinner at Caves House.

Games Day

Never underestimate the importance of spending time with your tribe. It’s a chance to relax, recharge and most importantly to talk to people who understand what you’re going through because they’re walking a shared path.