I normally write about all manner of despicable people here, dodgy politicians, corrupt officials, puppy farmers and animal abusers.

Today I wanted to write about something different. Today I wanted to write about someone gutsy and touch on an issue that is of vital importance to many, and most certainly her.

There is no way to overstate my admiration and respect for Jessica Sparks. There will be many reading this who know her far better than I do, I don’t pretend to know her all that well at all. However one thing I do know for sure, and all that do know her would certainly agree, just being in Jess’s presence is enough to brighten anyone’s day.

I know Jess through the Labor Party, first meeting online and then in NSW Parliament House where she is a staffer for a fantastic Labor MP. Although she is a Labor staffer, Jess is liked and admired by all who she meets, no matter what side of the political fence they sit.

Jess & Julia - The PM meets a star

Jess & Julia – The PM meets a star

I wanted to write a little bit about Jess today as she is going through a tough time at the moment, and when I say “tough time” I mean tough by Jess’s own standards.

Reading the updates over the last few weeks on Jess’s Facebook page has been both uplifting and heart-breaking, often both at the same time. You see Jess is in hospital recovering from an operation. Quite a big one.

Jess is a cystic fibrosis sufferer and is currently recovering from transplant surgery, a double lung transplant. If you think that sounds tough, you will think it even tougher to know that at just 24 years old, this is Jess’s second double lung transplant. After six years of faithful service her former lungs started to give up the ghost and once again Jess’s life was thrown into turmoil, and she had no choice but to hope for a donor and face the difficult surgery once again.

The mental and physical strain of the wait for a set of lungs that would save her life must have been virtually indescribable, yet Jess manage to describe it with such grace and honesty in a Facebook post

 

WAITING FOR THE CALL… – Jessica Sparks

A few people have recently asked me what it’s like, I hope this gives a bit of an insight:

Have you ever had to wait around for a phone call? Good news or bad news, you wait – one eye constantly on the phone, perhaps mildly agitated, not giving anything you’re doing your full attention because your mind keeps wandering back to that call you’re waiting for. How long did you wait, minutes? hours? days? (How long did it seem?!)

How about MONTHS in that state of limbo? Your heart skips a beat and intense mixed emotions flood in, every time you hear a phone ring. Every time.
Why? Because that call you’re waiting for is the call to have risky 2nd double-lung transplant surgery – and whenever it comes, be it when you’re eating breakfast, or on the way to the movies, or in the middle of the night – it will mean you have to drop everything and go. Leave your home, leave your family and friends, leave life as you know it. No time to think, no time to prepare or change anything. Just go.

It will mean everything in your world pauses (for how long, you won’t know), as you choose to confront headfirst the greatest depths of uncertainty we can face – that of life or death (or somewhere in between?).

It also means somewhere, someone else’s world has stopped completely and their family is grieving the loss of this person they love. Yet they’ve been generous enough to donate their organs and tissue so that another family isn’t soon in their position too – my family. Sadness, gratitude, sympathy, hope – it’s a strange mix, you can’t help but feel torn.

It will mean life will never be the same for you. This surgery – even when it goes relatively well – is like going through a door that you’ll never be able to open and go back through again. You must play the cards you are dealt (but to be still playing at all would be a win to be thankful for!).

The reality is that, this call, whenever it comes, will mean that day is either the last day of your life…or the start of a series of daunting challenges and battles that’ll test your limits like never before and – you hope – eventually lead to a new day; a new life to adapt to; a new beginning.

Neither is a particularly comforting or enticing choice, but it’s a necessary choice when any chance of survival you have depends on taking this risk, this leap of faith – for the chance to live again. I believe it’s worth it, I hope it will be a second time round for me, too. I’m fighting all the way with everything I’ve got to make that happen!

This is what being on the list, waiting for that call for a double-lung transplant is like. Transplant isn’t easy or simple or straightforward, like many who don’t know much about it tend to think.
So when your phone rings next (or when you’re waiting for someone to call yourself), spare a thought for all those waiting on the various transplant lists at the moment, waiting for kidneys, livers, hearts and lungs, holding their nerve with courage and strong resolve.

 

Living with cystic fibrosis and living on an organ transplant waiting list was not going to slow Jess down, not for a moment. Jess is a tireless campaigner for the Labor Party, a seasoned traveller and graduated from Wollongong University with a Bachelor of Laws and Bachelor of Journalism, with a Distinction no less. On this note I have to say that from what I’ve seen of Jess’s work, she is a brilliant writer, one of the best I’ve read in fact, she has written many articles for the Illawarra Mercury and even been published in the Daily Telegraph.

Jess also competed in the 2010 World Transplant Games, and the 2011 Transplant Games in Sweden, Jess was Illawarra’s Businesswoman Of The Future in 2013, and upon graduating from University was awarded the 2016 Chancellor Robert Hope Memorial Prize, The Universities highest honour.

Cleaning Up - Jess scores big in Sweden

Cleaning Up – Jess scores big in Sweden

Not only has Jess achieved that, Jess has also started Sparking Life Australia, a foundation that provides information and support for patients and their families and friends.

Sparking life also provides information for potential donors, and the families of those who have given the gift of life. This is a side of the transplant story that is all too often forgotten, but every transplant patient is well aware of. Here is how Jess put it a couple of years ago on Facebook;

“I don’t normally write too much on Facebook, but I wanted to take the opportunity, because 6 years ago today, I received my double-lung transplant – the second chance at life that came just in the nick of time.”

“I never forget that while 17 July 2009 marks an occasion of life and celebration for my family and I, for my donor’s family, that day (and every day) since, it is the opposite – it was and has been a time enveloped in pain, grief and loss of someone they loved. That donor’s legacy of saving lives of strangers in need is a mighty one – I hope that my donor and their family would be proud of what I’ve done so far to continue that legacy.”

Jess and Layne Beachley raising awareness

Jess and Layne Beachley raising awareness

What both of Jess’s donor’s families can be proud of is providing the gift of life to someone who touches everyone she meets. Someone who has dedicated he life, both working and social to helping improve the lives of others. Someone who has spread the word on both cystic fibrosis and organ and tissue transplants far and wide. They can be incredibly pleased to have made such a sacrifice to help someone who anybody would be proud to call a friend.

If you would like to do something to help brighten Jess’s day, you can like the Sparking Life Facebook page, or donate to any one of the numerous cystic-fibrosis charity organisations. However most of all, Jess would love you all to give some serious thought to organ and tissue donation, and be sure to inform your family of your decision.

I hope you have a speedy recovery Jess, you are so much more than valued. I look forward to seeing you on the campaign trail somewhere soon.

 

3 thoughts on “Between Two Lungs – Someone to truly admire

  1. Thank you Peter, for this post..I have sent it on to other friends…
    I am not…from personal choice…on any social media..but I still manage to “spread news” around….good or bad…& these days…it is mostly the latter!
    HOWEVER! I want to say…Godspeed to Jess…& heres hoping that she will “receive” what she so urgenty needs.
    I have been registered as an Organ Donor now ..for quite a while…& UNSW is getting my mortal remains to fuss & probe over…if thats what gives them their kicks..metaphorically speaking, haha. It just involves filling out a few forms (even easier than doing your Census, folks!)…& you get a nice Colour Card to carry on your person at all times.
    At nearly 75, my organs might not be of much use…there again…im in TipTop Shape, & have never smoked…etc., so what ive got might well help Jess, or others like her.
    Doing something like this gives you a nice Warm n Fuzzy Feeling too!
    Who knows? I might even up giving some of my better bits to Kathy Jackson!

  2. Thanks Peter. We should all be organ donors. I have been on the register for decades and am assured that age is not a barrier to helping others, it is surprising what can be used, and i find comfort that when i die perhaps I could have helped another person to live. It is simple to do. read the gov site and decide. http://www.donatelife.gov.au/decide just make sure your relatives understand your wish.

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