A Sense Of Self.

I resigned from the ABC in 2013.

I had been reporting for the Four Corners program for nearly 20 years, and done various stints at triple j, Radio National and Media Watch.

I loved the job but towards the end of my time at Four Corners I found myself increasingly tired and stressed. It was time to move on.

I was now looking forward to getting fit and healthy in my new stress-free existence. But it wasn’t to be.

Eighteen months after I left, I was diagnosed with Parkinson’s disease.

I knew virtually nothing about it. To me, Parkinson’s meant a bad tremor, an awkward gait and difficulty with handling small change.

I’ve since learned it’s a complicated disease of the brain that can have different effects on different people.

For me it’s meant pain and panic attacks.

Googling the symptoms

Parkinson’s disease has had a devastating effect on my life. It’s made me physically weaker, more vulnerable and self-conscious.

Now I could no longer go body surfing every Sunday morning with my friend, Ann. For many years, we had swum, whatever the weather or surf. But now my legs had inexplicably lost the capacity to thrust me through the water, and I no longer felt absolute confidence in my ability to handle strong waves.

Once I was diagnosed, some of these changes made more sense, but I felt I was no longer the person I used to be, my sense of self had diminished.

This is a very hard story for me to tell because it involves exposing my current condition to a public audience.


I feel that for such a common disease and such an ill-understood disease, there’s a desire in some senses to keep these things private because, in a way, you’re not the person you were before and you feel more vulnerable. And more open to people’s judgment. And pity.

I don’t want pity and I don’t want judgment.

Did I really want the world to see?

Earlier this year, in the middle of my struggle to accept all this, the idea of making a documentary was raised.

Would I be interested in working with my partner, Martin Butler, and good friend Bentley Dean on a film that explored my new reality? To dig down into what it means to have a serious illness and its effects on relationships with family and friends?

Image via ABC.

Bentley and Martin have been making films together for almost 10 years. We knew how to make a good documentary, but this subject would need a commitment to make a completely honest and forthright film.

This could only happen if I was prepared to let people into the life I now live — up close and very personal.

Given that my daily reality involves distress, a lot of pain and panic attacks, I was wary. Up close and personal with me at the moment is not always a pretty sight. Did I really want the world to see?

It was a big ask but we agreed that if it was all too much and the filming exacerbated my stress then I could withdraw at any point. It meant I could give things a try and go to areas where I wasn't comfortable, knowing I could say 'no' later.

The first time I saw the rushes of my panic attack in the doctor's surgery I was appalled. I had no idea I looked so bad and so mad, like a half-crazed, underfed animal in the presence of a malignant predator, with a long lonely drool of saliva falling from my lips into my lap.

There was no doubt in my mind we needed the scene, but I was pleased the drool never made the final cut.

I didn't want my children to worry about me

I also spoke to my two children before we went ahead. Did they feel comfortable about their mother going public with her afflictions?

In the first stages of my illness, I would hide in the bedroom when they came around because I didn't want them to see me and worry about my condition.


One thing I learned was that at 27 and 31, they were no longer children, and they had already lived through the time of denial and cover-up when I was diagnosed earlier with depression.

It was a bad strategy then. They knew something was going on and once it was out in the open it was better for us all.

They were both in favour of the film being made and agreed to talk about these difficult issues from their perspective. They are rightly proud of their contribution to the final product.

I mean, the hardest thing for me is being damaged in front of my children and not being the mother that they grew up with.

I was becoming much more isolated and depressed and I didn't want them to know any of it. I didn't like them to see me in a state where I had lost control of my emotions.

I guess I'd hoped that somehow — I don't know what I thought — that I could get better without them ever knowing.

I was up for a challenge

Still, I had my doubts. Did we have a story? Would it be good enough? Would people be interested?

Suffering from a degenerative illness such as Parkinson's disease affects many thousands of Australians, but do people really want to know?

I knew virtually nothing about Parkinson's when it was first put to me that I might have the disease. I did not know, for instance, that people with the disease are 50 per cent more likely to develop dementia than those without it.

I was also unaware of its connections with panic attacks and pain. I believed we would only succeed in making a good, honest film by showing the wide-ranging and unpleasant manifestations that come with the disease, and I was wary. Would I be placing too much physical and mental stress on myself?


Two close friends advised against it, concerned that my physical and mental health might not be strong enough. My eldest sister, a doctor, expressed the view I'd be better off devoting my time to getting better than looking for a good grab.

In the end, a big part of my decision to make the film was that I was up for a challenge, one not unrelated to what I've been doing for nearly 30 years — making long-form radio and television documentaries that shine a light in dark places.

In many ways, this is the hardest film I've made, and I've made some tough ones over the years.

But now that the film exists, and will be shown on national television, I am very pleased. The entire process has done wonders for my sense of self.

Last weekend I posted on Facebook for what I calculated was the second time in my life to let past and present friends and colleagues know that I had been making the documentary.

The response was overwhelming and I was touched so many people commented and congratulated me, saying it was amazing and fabulous and brave. This was a huge confidence boost, and from that I understood there was a large audience and hunger for stories that explored the adversity life can deliver, in a close and personal way.

Watch Four Corners' story on A Sense Of Self on ABC TV on Monday, November 21 at 8:30pm.

This post originally appeared on ABC News.

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