Our Greatest Achievement

The most important feature of my story is my family and friends. And at the core of this story is my wonderful wife Nicole. Nicole and I became a couple less than eight months prior to my diagnosis. Yep, only eight months! How’s that for timing?! Nothing like a cancer diagnosis early in the relationship to test its strength. But luckily for me, Nicole was always there, holding my hand and supporting me through every challenge. I cannot describe how lucky I feel to have her in my life. In fact, anything I’ve ever said or written in praise of Nicole, our love, or our partnership has always felt like an understatement.

Perhaps unsurprisingly, living with MF and the threat it brings upon my life has brought many challenges to our relationship. Any dreams, decisions, or joy we would entertain about the future was always shaded by an ever-present layer of uncertainty. Many other couples have the pleasure to dream and plan for their future with unbridled optimism - it’s a freedom they probably don’t even know they have. Kids, mortgages, careers, holidays, or even an early retirement can be dreamt about with clarity and excitement. Nicole and I only had eight months of that kind of uncorrupted freedom.

From the day of diagnosis onwards, we were aware that a bone marrow transplant was an inevitable part of our future. We knew the grave risks this procedure carries and we greatly feared the moment my haematologist would say, “Dane, it is time.” It would likely be years before this eventuated, but no one could predict whether it would be 2 years, 5, 10 or 15+ years. We had little choice but to accept and surrender to our precarious future.

Seven years after diagnosis, only three months prior to writing this, my doctor finally said ‘It’s time you started to seriously think about a transplant Dane’. A series of substandard liver function tests had triggered the decision (it was later found that I had developed portal hypertension). For Nicole and I, our vision of the future had suddenly shrunk from years into months. Through our tears, we asked ourselves what aspects of our lives would we regret if the worst-case scenario were to eventuate. Both of us agreed that we wished to be married.

And so five weeks ago, on the 23rd of December, 2016, I married the love of my life in front of a small group of our family and friends. In the 10 weeks we had to plan this remarkable day, both of us had a chance to properly reflect upon time we had shared together. Disease could have easily torn us apart, instead it only brought us closer together. Disease may have inhibited our lives, yet we forged a path and thrived. We are stronger now than we ever have been. We both agree that our love is our greatest achievement.

The eight years after meeting Nicole was the richest and most fulfilling time of my life, and I have her to thank for that. I have been able to find a peace with the world that would not have happened without the guidance of this wonderful person. On the day of our marriage, I gave a speech to Nicole and our guests to celebrate this fact. I wish to share it again here:

“When I first met Nicole, I'm not going to lie, it was the physical attraction that started things off. And who could blame me? But as I got to know Nicole, I began to learn that there was something pretty special about this girl. She was intelligent, she asked engaging questions, she made me feel connected. But perhaps what I found most attractive, was that she had this amazing curiosity and zest for life that I had never encountered in any other person that I’d met before. Over the years, as our love grew and evolved, I got to know Nicole on a much deeper level. In fact, it was her remarkable emotional intelligence that has come to change the way I think about the world. It is through this, I began to understand where her unstoppable zest for life comes from. So on this day of our marriage, I feel compelled to try and describe to you guys what I’ve learnt from eight years of my beautiful partnership with Nicole.

I would like to begin by sharing a story. It’s a historical story about a group of travellers on a ship that found itself sailing into a big storm. The vessel was one of those old wooden barges that wasn’t really designed to cope with these kinds of storms. So understandably, the passengers on board were really terrified and became awfully panicked. Each one of them had convinced themselves that the wind and the waves were going to tear the ship apart at any moment. But there was one passenger onboard who did not lose his composure during this time, and he just that sat there in a corner quietly with a peaceful expression on his face.

And the reason he was the only one who was able to maintain his composure in the face of impending disaster, was that he was a pig. Yep, that’s right. He was able to maintain his composure because he was a pig.

And think about it - in that same scenario, where everyone on board the sinking ship was completely helpless to do anything to save the situation, or even helpless to save their own life, wouldn’t it have been nice, at that very moment, to have the same level of emotional detachment as that pig? Imagine the comfort that could be brought at that very moment, by not being able to comprehend or fear your own death.

But the remaining sailors were not pigs, they were human. And as humans, we not only naturally fear death, every single one of us is bombarded by a multitude of different fears and anxieties during every day of our lives. Where’s my next job going to come from? How am I going to put food on the table? Can I afford this holiday? Does Nicole really love me? Did I get too drunk last night and cause a scene? Why can I only sing out loud or cry at a movie when I’m alone? Why do I so often retreat into humour or silence when confronted with anything emotional?

Imagine yourself alone, inside a closed, empty room with no windows and no devices to distract you. Imagine yourself just sitting there alone –just you and your thoughts. I challenge anyone here not to have anxious thoughts about their own existence within the first 20 minutes of being there. Try sitting on public transport without listening to music, reaching for your phone, or reading a book to help distract you from your own thoughts.

As humans, we are often just big wound-up balls of stress, fear and anxiety. Occasionally, I worry about Jarrah when I think about the different challenges that she’ll have to face in the future. Because on a broad level, popular culture teaches us that our fears and vulnerabilities, rather than actually being a fundamental aspect of our human life, are instead parts of ourselves that should be hidden away. At some point Jarrah is going to jump on facebook and see her friends having fun at parties, or on holiday where everyone is smiling and everything is great with the world. Why would anyone then want to post that they are depressed or they are worried about their place in the world?

Jarrah is going to experience certain aspects of cultural life and maybe sometimes believe that her real value as a person is dictated by how you look, and how popular and talented you are. Jarrah, in a very subtle way, is going to be told how you should ACT as a human, rather than who you ARE as a human.

Fortunately for her, she has Nicole as her mum. And fortunately for me, I have Nicole as my partner in life. One of the most important lessons Nicole has taught me in the eight years that we’ve been together, is to never shy away from who I am as human being. I am not the pig on the ship and I never will be. None of us are.

Yet when confronted with a situation that is socially awkward or particularly sensitive or emotional, I have personally found it incredibly comforting and soothing to take the path of least resistance. I have found an awful lot of comfort by joking about the situation, internalising it, lying about it, getting angry at it, or even walking away from it. When there is an elephant in the room, rather than pointing it out and standing face to face with it, I have always found a way to sweep it under the carpet or side-step around it. Many times this avoidance has served me well, but far too often I took the easy way out.

But then Nicole showed up in my life. Nicole is authentic, she is raw, and she is incredibly real. This is because Nicole does not shy away from the ups and downs of human life – she knows that sometimes life gets messy, no matter who you are.

Nicole knows that multiple emotions can be held at the same time. She has told me that sometimes, when she’s been watching Jarrah play, that she has had feelings of utter joy. But at the same time she also feels deep sadness, because she knows that this time in her life will pass.

As Nicole’s friend, we can always trust her to listen to us, to connect with us, to be there for us, but also not to race in and try and fix things. As her friend, we know she is able to sit with us while we’re in the trenches.

At the time I was writing this speech, I thought ‘Geez Dane, this is getting a bit dark for a wedding speech, maybe lighten it up a bit’. And anyone who knows me certainly wouldn’t describe me as someone who is focused on the deeper and darker aspects of life.

But it is this darkness that is at the core of what I’ve learnt. Nicole has taught me that the only way past the messiness of life, is not around it, but straight through the middle of it.

I’m not going to stand here today and claim that I’m now as emotionally open as Nicole is, because that’s not true. I still struggle, a lot. But when I am open, I feel empowered, and most importantly, I feel a sense of peace with the world that I would not have experienced otherwise. And with that come this amazing zest for life, the same zest for life that attracted me to Nicole all those years ago.

In the face of my disease and the struggles we have faced, Nicole has taught me how to thrive in life. I don’t think any partner can offer any greater gift than that. Thank you Nicole, I love you deeply. I look forward to growing old together.”