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.

Book Review: To Take Into The Air My Quiet Breath by Stephanie Gunn / Defying Doomsday Anthology

Favourite Line “Georgie,” she said, “why would God put flowers in our lungs, if it makes it so hard for us to breathe?”

Post-apocalyptic fiction depicts survival in a changed world full of challenges – where survival often depends on being the strongest. Defying Doomsday is a snapshot of what may happen if you were disabled or had chronic health problems before disaster struck and is a reminder that there are different types of strength.

My son has a detailed zombie survival plan. Not only has he scouted a location, he’s also figured out the security measures that need to be put in place – in fact his plan even goes as far as to include a backup location just in case the first fails. His biggest challenge is the need to survive alone without family backup.

As a chronically ill person I have a basic generalised apocalypse plan. It’s not as detailed as my son’s and since my transplant it’s changed. My health needs are more pressing as a transplant patient than they were when I was only dealing with my medical needs for Cystic Fibrosis. Although I had serious complications with my pancreas when I was a child, I have become more pancreatic sufficient as I age – I could make do without Creon if I had to. I’m not allergic to any antibiotics, so I believe a raid on any chemist should see me through the immediate future.

Post-transplant I have more pressing issues. Access to immunosuppressants is both lifesaving and time critical. I know which hospital pharmacy I believe to be the easiest for me to access under a variety of circumstances along with a brutal entry method if required.

Given the thought I’ve put into my survival in a doomsday scenario, Stephanie Gunn’s contribution, “To Take Into The Air My Quiet Breath”  which features twins with Cystic Fibrosis, Eliza who is on the transplant list and Annalee who is post-transplant, was for me the most interesting story in the anthology.

Gunn’s casual mention of raiding neighbouring houses and pharmacies for medicines including immunosuppressants gave me a bit of a chuckle – I know the reality won’t be that easy. At best my local pharmacy carries a single box of Tacro for me to use in an emergency and orders my scripts in as they are needed.

Flus can be deadly to people with Cystic Fibrosis, even more so to people who are post lung transplant, so I thought Gunn’s mention of a flu pandemic having caused the apocalyptic event interesting. Not everyone with Cystic Fibrosis caught the bird or swine flu, or were affected by SARS – but we are included in the most vulnerable group, so this scenario is feasible, but would have been discarded by most other writers who would have dismissed us with a wave of their pen. However, the close contact with the stranger did bother me, as the subsequent lack of infection afterward didn’t sit quite right.

Those two points are my only niggles in Gunn’s short story, which is high praise from me on fictional characters with Cystic Fibrosis.

Other people may wonder if someone with Cystic Fibrosis can survive an apocalyptic event? The answer is simple.

Absolutely.

We are tough, stubborn and used to fighting to stay alive. Generally, as a group, we’re tenacious and don’t tend to give up easily. Our lives are challenging to begin with, our survival even in this world of medical marvels not guaranteed – at times we survive due to sheer doggedness alone.

For me, an apocalyptic event would be challenging, but not impossible. I’ve faced worse foes and lived to tell the tales.

And just in case you’re wondering, the other stories in this anthology also get my tick of approval.

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You’ll find more of my recommendations for reading about Cystic Fibrosis on my Pintrest Board : Cystic Fibrosis in Print – Books and More