Letter With No Address

The day our paths collided, you became my lifeline. I was, you see, in a far worse position than I allowed myself to believe. At best, I had mere weeks left to live, yet somehow I convinced myself that there were months, and many of them.  That denial regarding the true state of my health gave me the determination to cling to life.

To be brutally honest, I didn’t give much thought to the origin of my new lungs, which makes my discussions seem a little clinical now. But please understand, this was a coping mechanism – I was hanging on by my fingernails, existing on hope, and although I knew someone else had to die, I didn’t dwell on it. There is a sense of desperation, a willingness to embrace any option when your time starts running out.

In my yearning to continue living, I never thought of you as a person. As an individual with hopes and dreams. Instead, donated lungs were an abstract concept, part of a selfless act that would save my life. Donated from a generous individual and with consent from a family brave and strong, who during a dark and horrible day and in the midst of their grief, still thought of others.

Reflecting makes me feel a little callous and shallow because I think about you every day now. I’m so consciously aware that these lungs, now a part of me, once belonged to you. And you are someone real. Someone who breathed, walked and talked. Someone who was happy and sad. Someone who loved and was loved. Someone who gave me much more than a second chance. Someone to whom I will always be connected, although I will never know you.

I am entrusted with the guardianship of taking care of a part of you, and with it comes the responsibility to live life well and to the fullest. Since the day your lungs became a part of me, I’ve experienced many milestones, both big and small. My extra time has not been wasted.

More importantly, there is a simple pleasure in waking each morning to take a sweet breath without coughing, without gasping, without pain. And each wonderful breath is followed by another. Because your lungs, our lungs, do what lungs are supposed to, naturally and without effort, giving me more energy to pour into the world and make a difference to those things that matter most to me.

I am not who I was before the transplant, although I am still me. My son describes my changes succinctly. I am, he says, who I was always meant to be. But of my changes, great and small, it is the ones with no explanation that fascinate me the most, as if a part of you has imprinted onto me.

The words “my donor” leave a bureaucratic taste in my mouth. To me, it reflects an impersonal nature, as if this had been an ordinary transaction between strangers. There is nothing ordinary about this; it feels deeply personal to me. You’ve given me so much more than a second chance; it’s as if the final jigsaw piece has slotted into place and now I’m complete. As long as I continue to breathe, your contribution to my life will never be forgotten. I have this fervent wish that wherever you are, you know what an impact you’ve had.

There is nowhere I can send this letter, it has no address. So instead, I’ll send two little words out into the universe and hope that somehow they find you and let you know you made a difference.

thank-you

Sunday 20th November 2016 is national Thank You Day for our fabulous organ donors and their families.

donatelife-thank-you-day-2016

You’re So Lucky You Have Mild Cystic Fibrosis

You’re so lucky you have mild Cystic Fibrosis.

I‘ve heard many variations and phrasings over the years – but they all meant the same thing, how lucky I was that I ‘only’ had mild CF.

Lucky?

I was lucky that I had to have physio twice a day, add in a nebuliser or two along with a multitude of tablets?
That’s lucky?
Because I didn’t feel lucky.
I felt different.

There were nights and days I spent in constant pain, coughing until my head pounded, my ribs felt like they had been bruised from the inside and my back had nearly seized in pain. If that was lucky, I didn’t feel it then either.

The night I coughed up mouthful after mouthful of blood for hours on end? Was that when I was lucky? Because I’ve always thought that was the single most terrifying night of my life.

And I sure didn’t feel that lucky when I was in end stage respiratory failure on oxygen waiting for new lungs.

So how does someone who is supposed to be ‘lucky to only have mild CF’ end up in respiratory failure?

Simple.
Having a mild dose of CF is a fallacy – a bit like saying someone is a only a little bit pregnant.
CF is a progressive disease and like any progressive disease you progress through the stages.

Everyone’s journey is different.

Some people with CF stay in the mild stage for years with minimal intervention. Others work damn hard to keep their CF in a mild stage. Some people go through a steady decline, and others decline rapidly.

Until people with CF reach the end stage of the disease it easy to think luck is a component. But like any invisible disease, people on the outside don’t see the hours of work put into maintaining our health.

So was I lucky that I stayed in the mild stage of the disease until I reached my early twenties?

Nope.

My good fortune was that Lady Luck gave me a family that invested hours into keeping me healthy. I underwent endless physio sessions, day after day – but those treatments didn’t happen by themselves.
Someone had to sit with me and physically do my therapy.
They never once let me off the hook.
Not once.
Not when I was tired, or sick, wriggly or yelling.
Not when I was too hot, or just plain couldn’t be bothered.
Not one single time.
Physio came before everything. Always.

I was lucky I had a family who never gave up.

 

With my wonderful Pop, 1975

* This post has been republished on The Mighty

Disrupted Festival 2016, Not Every One Gets A Second Chance

On Sunday I took part in the Disrupted Festival. Sitting amongst the shelves on Level 2 of the State Library, I was one of many living books sharing my story.

I had fifteen minute blocks to tell my life story to eight different strangers. I’m used to delivering talks for schools and community groups over the course of an hour – as you can imagine it’s pretty tough trying to squeeze your life into fifteen minutes.

Usually the focus of my talks revolve around my health – which on its own is quite a gritty topic. But on Sunday I also had to cram in my lifestyle choices, those things I had learnt about myself during my transplant journey.

I started off a bit rocky, running out of time in my first session, but I had the timing down pat by the end of the day.

One thing I took away from talking to my fellow living books on Sunday is that many of us were imparting a similar message. Life is short, be true to yourself and follow your dreams. Which made the title of my book “Not Every One Gets a Second Chance” even more poignant.

disrupted-festival-second-chance

Speaking of that wonderful second chance that I received, coincidently Sunday also marked the start of DonateLife week here in Australia. The decision to be an organ donor is an important one – and it’s a choice that saves lives.

Please consider becoming an organ donor, and if this is something that you can see yourself doing, make sure you tell your loved ones so they know your wishes. You can register here.