Tania Hayes - I am a carer

Below is the transcript from a recent moving episode from Radio National's Perpespective program.

Identity politics has been, and will always continue to be, one of the most contentious phenomena behind our collective existence. Whilst the program challenges our basic values constructions, particularly in relation to the role of work in the construction and affirmation of individual worth, the lessons from this deeply personal account can very readily be applied to our Muslim lives.

I always find it disconcerting when Muslim sisters, particularly Muslim mothers, feel obliged to validate their motherhood by reference to some extraneous criteria. How many times have we heard the phrase 'I am a stay at home mum, but ...', and the individual in question then proceeds to outline the countless other facets of their existence whose worth they believe society would recognise? The reality is that such a thought process is in fact an indictment of society's devaluation of the role women and of motherhood. On the flip side, how sad it would be if we were to likewise measure the worth of a man based upon his vocational considerations.

What is of value is your contribution to the betterment of this world, a fact that is manifested in both your view of mankind and the construction of transcendent relations between mankind. Muslims, both males and females, by virtue of their Islam, are uniquely placed to offer leading contributions to this goal.

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Tania Hayes - I am a carer

Eleven years ago when I was just 22, my life changed in an instant. Just a few months short of our wedding day, my fiancé Warren, was struck down with a life threatening 8 cm Acoustic Neuroma Brain Tumour. All of a sudden our hopes and dreams disappeared and I found myself embarking on an uncertain new life of responsibility. That new life was called being a carer. I was now one of the 2.6 million Australians who devote their life to become full time carers.

As we walked this journey together we were confronted by a hospital stay of a total of 446 days, the majority of which were spent within the intensive care department clinging to life support. From the first day that the nightmare began, I made the brave decision to give up my job and everything in my life to be by Warren's side.

His life from one day to the next had altered beyond recognition, and as a result my life was changing too. One minute he was young, he was healthy and he was vibrant - the next he was barely alive, trapped in the isolation of his illness, unable to eat, speak or move. The carefree young life that we had lived side by side had disappeared and suddenly I found myself at Warren's beck and call as I taught him to do the simplest of tasks in order to rebuild his life.

My role as a carer is a full-time job, it's 24 hours a day, seven days a week, with little time off to be myself, no time to be sick, or time off for annual leave. I am on call around the clock providing help with the simplest of tasks that most people in life take for granted, like feeding, toileting, showering, dressing, transferring, rehabilitating and mobility.

For many of us, we are called into this role of becoming a carer unexpectedly. We don't have the experience to deal with the life changing moments that are presented to us. We stumble and we fall and we get back up again as we walk this windy and scary road alone. It is a road that is sometimes beyond our capabilities, but we are given little choice but to hold on tight and hope that we can make it through.

As I look back on my life and the caring role I began at just twenty-two, the one thing that sticks out in my mind the most has been the adjustment to the loss of my identity. Who was I now? My old life had disappeared and now I was 'just' a carer. Society places such a high importance on what we do in life. When people meet you, one of the first questions they ask is, 'So, what do you do for a living?' And if you fall into the right category, you are pigeon-holed as being someone of importance. When I first became a carer and was asked that question, I felt more judged than ever before. It seemed as though what I was doing was of little importance. I felt I wasn't valued, despite having gone through more suffering than most people experienced in a lifetime, and coming out the other side.

I think it is wrong the way society values people not by who they are but by what they are. So many people live their life by the suit they wear or the car they drive. And these materialistic possessions become their identify. And it is only when they are forced to step outside of their comfort zone that they realise that they are living a life that is not true to themselves.

After many years I have come to realise that it is not what you do in life that matters but how much love you put into what you do. My caring journey has allowed me to develop some amazing qualities in myself that I never knew that I had. I found an incredible strength deep inside that has supported us to this day. I found the courage to never give up, despite all the fear and suffering. And I have developed a ferocious determination that has managed to conquer every obstacle in my path.

Being a carer may not be the most recognised job in the world, but it is by far the most rewarding. Now when people ask me what I do, I am proud to say that I am a carer, knowing that by doing this job I am giving Warren the greatest gift of all - a life worth living.

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