A taste for life

When I think back to that first week after Ian's diagnosis, my heart breaks for the carefree 30-somethings we had been just days before. Two people with everything to live for. Two people suddenly facing the dissolution of their lives as they knew them.

We were engaged, I'd just finished my final exams and we were both in the training programs we had been working towards for almost a decade. We thought the tough part of our lives was over.

I wonder now how we, as the people we were then, got through those early days. How we managed to go to work every day, treat patients and yet keep our unfolding nightmare to ourselves.

We decided very quickly that the things that were important to us were still the same: to get married and to travel while we could. Ian wanted to get married while he could still walk, so we planned our wedding in less than three months. It was a good distraction, and kept us busy as the reality of our situation hit home. We only told our family and a couple of very close friends about the diagnosis at the time.

In less than a year, we've had to redefine ourselves. Life has become far more serious and we've faced much darker times than we were prepared for. We've forgotten what it is to be carefree or to have a future. Ian has had to come to terms with his diagnosis and had to grieve for the person he was and will never be, as he faces the relentless progression of his disease and the inevitable accumulation of physical impairments. I have had to assume the role of "carer" though not in the physical sense yet. How I will confront that is yet to be seen.

We initially reacted by becoming closer, united by our grief and by the secret that locked us together. But as Ian's despair deepened, he began to push me away. In part to protect me, and in part I think to exert some sense of control over at least one aspect of his life, if no other could be controlled.

I realise now that I am watching from the sidelines, because ultimately this is Ian's battle, and no one can understand how it feels to face your mortality until you are faced with it yourself.

We were waist-high in doom and gloom and dread. We knew what we were facing, as both of us as doctors have cared for people with motor neuron disease at the end of their lives.

What we desperately needed, and couldn't find in those early months, was some optimism about the life in between - some hope that there could still be joy. I remember the morning when Ian first showed me the video of Steve Gleason, an American NFL footballer who was the same age as Ian when he was diagnosed with MND a year earlier. Steve's story was aired on NBC on the night of the Superbowl. He was a young man with everything to live for - a beautiful wife, a newborn son - who was diagnosed with MND. And he was fighting it. Suddenly, here was a face we could identify with; someone who was going through the same battle, and making the best of it by putting all his energy towards something positive. His organisation Team Gleason raises money and awareness for MND in the US, but most of all it inspires. The story detailed the Gleasons' journey from football, to marriage, to the diagnosis of MND and their decision to have a baby despite it all. It parallelled our own journey and was at last a glimpse of hope.

My first reaction to Ian's diagnosis was that we should have a baby. It would be the only thing I would have of him after he was gone. It had always been a part of the future we had imagined, if not the immediate future. But since that time it has evolved that we are not likely to ever have a child of our own. Realising that the unborn child you talk to in your mind, that you imagine your husband holding for the first time, whose life is going to give yours a new meaning, is not going to exist is one of the hardest things to deal with as a 30-year-old woman. I know that I am not alone, and it has made me realise how it must feel for those people who desperately long for a baby and are unable to have one.

What I do have is an amazing husband, and that's the best but hardest part of it all. Ian has always been good at everything he set his mind to (always with relentless determination). Not just good, the best. When he was diagnosed with MND, the irrational part of me wondered: why Ian, why not me? He's a better doctor, much smarter, funnier, wittier, and would have left his mark on this world with a ground-breaking discovery to advance treatment of haematological diseases. He would have made a difference to millions of lives, I'm sure of it. What I've come to realise is that he is proving me right. He is still very much that person. He's just making a difference in a different way.

When we were going through some of our darkest times, my best friend asked if Ian might consider writing a blog to share his experience and to connect with other people. At the time the idea was at a disconnect from where we were in our journey. And my reaction was that people who write blogs must firstly have a sense of self-importance, and secondly, an element of selflessness and generosity of spirit to put themselves out there in the hope of being of some help to someone sharing a similar experience. Things which we were not. And now here we are.

I don't believe we have a sense of self-importance, because (I hope) we are writing for a purpose. I do believe, however, that Ian has reached that point of believing, finally, that he has something to offer and that his fundamental goodness and generosity is at last springing up from a place where it has been hidden by the burden of a terminal illness.

The real light first started to shine when the boys (Ian's closest mates) started to invade our house on a Thursday evening. Ian had been refusing to answer their phone calls and so they took it upon themselves to turn up unannounced. I am so glad they did. I think it was what retrieved Ian from a place he was going to that I was helpless to do anything about.

At first the boys just started hanging out, and then someone had the bright idea to brew beer together. A Bright Ale. One of the greatest days was when I looked around my kitchen to see four huge men attempting to brew beer. I couldn't have been happier. Ian was having fun and they were making something! And so the first brew was born, and with it a new purpose in Ian's life.

He has renewed energy, and now has something to put his energy towards when he can no longer serve the patients he has cared for. The generosity and persistence of those boys I believe is what saved him, and is a tribute to the strength of friendship and the importance of the people that love you. For that I will be eternally indebted to his friends.

We have only "come out" and told people in the past couple of weeks that Ian has MND, just short of a year from his initial diagnosis. It's not how I would have done it, but that was what Ian asked of me and I had to respect his decision. I've since realised that it was absolutely right for him, and for us, and I'm glad that I trusted his instinct, even if at times it made things more difficult.

We are in a different place now, and although it's a hard thing to tell people, the fact that Ian is now in a place of acceptance and productivity means that it is much easier than before. In the same breath we can now say that this horrific thing is happening, but we are moving forward and can be proud of what he is achieving.

As our friends find out, they go through the journey we first experienced 12 months ago. It is emotionally challenging, but there is joy, even as we relive the grief with them. We are discovering the generosity in people, with their natural reaction to offer their help in any way possible. The timing is, in fact, perfect, and we are now able to harness that energy and channel it into Ian's beer project.

While we are facing a much shorter future - one that inevitably has an ending with, at present, unfathomable pain and sadness - the journey in between, at last, has a sense of optimism and purpose.

Although many of our dreams will not be realised, I hope that Ian will see this dream come to fruition in the entirety of its potential. I've seen the darkness that Ian has endured, and because of that I know what this idea and this beer represents. I am incredibly proud that his emotional battles have led him here, and that he now has something bigger than himself to fight for.

The story A taste for life first appeared on The Sydney Morning Herald.

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