Gratitude

In the weeks leading up to my transplant, my mind was swimming in a strange mix of anxieties and introspective thoughts. A profoundly life changing event was edging closer and its proximity left my head buzzing. Fear was always there, of course, but thankfully for me those fearful thoughts never proved to be disabling. Instead they provided me with a greater clarity of purpose. Should the disease or the transplant take my life, I needed to make sure that my most meaningful thoughts and experiences had been documented. Above all, I wanted to do everything in my capacity to leave nothing unsaid.

My wedding speech to my wonderful wife Nicole took weeks to prepare, yet I’m forever grateful that those words have been voiced rather than trapped alone in my head. Many people are not given the chance to consider, create and share their own final tribute before they are taken to their grave. Yet for me, the opportunity was there, clear as day, and there was no way I was going to pass on this occasion. Whatever was to happen to myself, or our family in the coming months or years, Nicole can forever hold onto those words and reflect on the love that we share for each other.

Many more hours were spent creating a letter for my daughter Jarrah, a letter from the Dad that she may never get the chance to properly know. Those words were hard, tearfully hard, but they now exist in this world and I’m immensely proud of them. Every now and again I will picture myself reading the letter to Jarrah on her 21st birthday in person, rather than someone else reading it on my behalf. It’s a joyful scene that helps to symbolise my hope for the future.

With those letters complete, my attention turned to my Mother’s upcoming birthday. My Mum had recently retired and virtually all of her newfound free time had been dedicated to supporting me and my family as our D-day loomed closer. She was always our fall-back, our rock that we could reliably count on when the difficulties of life became overwhelming. Sadly, her 67th birthday was to coincide with the first day of the transplant procedure. Mum was never one to be effusive about her own feelings, but in the days leading up to the transplant I could sense her internal struggles. I wished to offer her some degree of consolation before we set off along this journey.

I began searching for a suitable birthday gift at a local bookshop, a place that I’ve frequented many times in the past. On this particular morning I was browsing among the collection of titles when a diminutive navy blue book caught my eye. The book was entitled ‘Gratitude’ and was written by renowned author and neurologist Oliver Sacks in the months following his terminal cancer diagnosis. On the back was a paraphrase etched in gold lettering:

‘My predominant feeling is one of gratitude. I have loved and been loved. I have been given much and I have given something in return. Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.'

Among the many mixed emotions that come with being diagnosed with life-threatening disease at 29 years of age, a feeling of gratitude is certainly not one of the most obvious. Every now and again I will compare myself with other people of my own age who can confidently plan for the future and who don’t have to carry the sickening burden of confronting their own mortality. When I frame my situation under this pretence, it can be difficult to feel a sense of gratitude.

Yet thankfully, I have spent little time thinking in this way. Sure, I’ve been dealt an unfortunate card with my health, but I can honestly say that any passing sentiment of self-pity was never dwelled upon for very long. Instead, I felt (and continue to feel) enormously grateful for what I have, what I’ve been given, and the life I’ve enjoyed. I’ve led a privileged life and the potent words of Dr Sacks helped me to revive this crucial side of myself. With this book, I hoped that I could share that same energy with Mum.

Mum’s gift was accompanied by a card in which I wrote:

‘Happy birthday Mum, Mumsey and G’Ma!

Although this maybe one of the toughest birthdays you’ve had given the timing, I hope you can still muster the energy and celebrate your own life and the excitement that lies ahead! Retirement is here and along with it will be the time and spaciousness you need to start your next adventure in life.

At the end of his book, Oliver Sacks writes ‘What is meant by living a good and worthwhile life – achieving a sense of peace with oneself’. Please know that whatever happens in the short term or long term, I have found that peace. And I have you, in part, to thank for that.

Much love from Dane, Nicole and Jarrah Xox.’

A year later and that sentiment seems far more tragic than reassuring. The little blue book of Gratitude no longer sits on Mum’s bedside table, but has instead found its way to our bookshelf. And on a shelf above that book sits a decorated pot containing the ashes of my late Mum.

Mum had been experiencing a variety of different niggles and minor ailments throughout the year, but her focus at the time was more on me and my ongoing recovery. Yet by August she had developed a persistent pain in her back that slowly spread to her shoulders. Mum, who lived by herself, always tried to be a stalwart, but in the end the pain couldn’t be ignored and by early September, Mum had driven herself to the emergency department. It would be the last time she would be behind the wheel.

Mum was eventually diagnosed with peripheral T cell lymphoma (PTCL), a horrifyingly aggressive blood cancer. A quick glance at the statistics of PTCL left little doubt about the immense challenges that lay ahead. The fog had barely begun to lift upon my own cancer battle but incredulously, here we were again, an emotionally exhausted family unit thrown straight back in the ring to fight once again.

Mum fought hard, real hard and we fought for her too. Mum had moved into the spare room at our place, while Nicole had quit work to be the extra set of hands and to support her practically and emotionally. But it was all over in 12 weeks. Mum took her last breath on the 22nd of December surrounded by family. The Christmas of 2017 was spent in a shocked haze, yet we still did our best to roll out the seasonal festivities for Jarrah’s sake.

A year can be a long time, an awful long time. Our past twelve months will stay with our family forever. At the time of writing, a new winter has arrived and with it a degree of normality has returned to our household. But there are undoubtedly wounds that have formed, we just can’t see them or know the extent of their influence.

Yet for now, I’m doing ok. In fact, I’ve surprised myself by how well I’ve been able to return to everyday functionality. I’m working full time, I’m exercising, I’m being a supportive husband and father. But underneath, I know there is some unresolved pressure built up inside of me, some unmet expression of the emotional ordeal that I have experienced. In these times I write.

So with my absolute gratitude, I write a final letter to my Mum:

'Dear Mum, if you’re listening.

A final farewell message can never be easy to write. I find myself searching for a composition of words that will neatly capture the essence of who you were and the lasting impression you had on my life, my family’s life, and those of others. But I find myself struggling to find those words. I sit at the keyboard and try to compose my feelings, yet my mind keeps pushing me to rehash the tragic circumstances of your final months. It clouds my thoughts and sways me from properly reflecting upon whom you were before cancer – my reliable and endlessly loving Mum. That’s the story I want to tell!

Perhaps a greater clarity of thought will come to me in ten or twenty years time, when my mind and spirit have recovered from the trauma and wear of last years events and the ridiculousness of it all. But maybe not. Maybe it’s just not possible to distil an adequate impression of your life into a few short paragraphs.

In March, I wrote and delivered a speech at your funeral and maybe those words will do for now. In the speech, I described your intense selflessness, as well as the profound and inescapable love you had for your kids and your darling Jarrah. I’m sure the one thing in life you would have hoped for, above everything, was that your family were happy and healthy.

I remember you sitting in my hospital room as another bag of chemo was attached to my line. You watched my hair fall out, you watched my skin and eyes turn yellow with jaundice. In your quiet contemplative moments, the helplessness and lack of control must have felt debilitating.

Thankfully, you also got to see me return home, you watched as my hair grew back, and you were there to share a glass of champagne with Nicole and I as we celebrated my 100 days post-transplant. A couple of months later, it was your turn to be the patient. Part of me thinks you waited for my recovery, for my strength to return, before you could finally relent to your own illness. You simply couldn’t die without first knowing that I was safe.

Mum, if you’re listening, I wanted to say that the results of my 1 year bone marrow biopsy were completely clear. I’m in complete remission! For the first time in ten years, I am cancer free! I’m going to be ok Mum.

Thank you for your absolute, unwavering love and commitment you offered me as your son. You opened the door to the world and held it open for me so I could walk through unimpeded. And in later life, you held the same door open for Nicole as we met, married and became parents. It’s especially tragic that the incredible relationship between you and Jarrah had to end so early, but there is now a star she recognises in the sky - a G’ma star - that she can always gaze upon at night and know that you are looking down on her. You will never be forgotten!

Love you Mum. Rest in Peace.'