I’ve lived with this all-pervading cloud of death for most of my life, as cystic fibrosis slowly destroyed my lungs, robbing me of breath. The transplanted lungs – a selfless gift that brought me back from the brink eight years ago – are now under enormous threat. I feel the presence of that cloud now more than ever. It follows my every step, gaining ground each day.
Even before my transplant, when I was attached to an oxygen tank, I’d bounce into the day. Now, I barely amble. Weight has stripped off me at an alarming rate. When I catch myself in the mirror, I barely know myself. I see glimpses of who I was, but they are few and rare.
‘Our journey, no matter how hard, is littered with beauty and joy … Breathe in the wonder of the world. This is our fuel.’
My beautiful Em, I won’t allow this beast to destroy my spirit. To fight my way out of this seemingly impossible darkness, to find me again, I have had to force change. To draw deeper than ever before.
The other lesson I’ve learnt is contained in a simple word, “kindness”. Kindness to others, and kindness to myself. Kindness was the shard of light I needed to crack open the darkness and allow me to focus only on today. Out of this revelation came appreciation for the small things. Appreciation for today, for you and Mum, for our extended family and friends. I saw in this shard of light the beauty in others, how wonderful people are. Each of us is such a unique gift.
Every conversation, every experience, every touch, every word is so very precious. I need to use the ones I have left wisely. Out of kindness, because of this preciousness, we have cried so many tears.
When my body and head say, “No, you can’t,” my will must continue to do all it can to push beyond what is rational. “I will” when everything in me says “I can’t”. I wish I could express my thoughts more clearly.
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How can we understand the randomness of life and death? How can we understand a world so lacking in justice or equity? How can a mutant gene that ravages people with cystic fibrosis cause such carnage over a lifetime? Where do we go, what do we draw on when the weight of one word from a specialist can plummet our hope, turning it into complete and utter despair?
I am so very tired. You and I have cried so many tears, Em. I am so sorry to you and Mum for the burden you’ve had to carry for so very long. I know it’s been hard for you both. Few can imagine the torture you’ve gone through. These diseases are like unwanted visitors who forced their way into our lives. Their presence is a stench so horrific it has seeped into every pore of our home.
When our burden is greater than what we can carry, there are few options available to us – collapse and be buried under its weight, or carry the load. As pressed down as we feel we are, I believe we can always find a way through. I have done it before – we have done it before – but the burden now feels so much heavier.
Wonderful Em, our journey, no matter how hard, is littered with beauty and joy. Take a hold of moments to appreciate what we have and focus on the good in life. Breathe in the wonder of the world. This is our fuel. Extend kindness to others. Live in today and don’t get caught up in what could be. Today’s problems are enough; there is no point taking on the anxiety and fears of tomorrow.
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We have no option other than to keep picking ourselves up, dusting ourselves off and pushing through, beyond what we believe we can withstand.
When there is no fight left in us, when all we want to do is curl up into nothing and fall asleep until it’s over, when we are convinced that all hope is lost, and we are bloodied and broken on the canvas, it is our will that revives us so we can fight for survival.
While we have breath, there is nothing our will can’t do.
Love you, Dad.
