Staying positive the Fox mantra for battling illness
Michael J Fox describes to Nick Miller the progress of his disease, how it opened up a world of possibilities, and the inspiration he has drawn from the reality of living with an incurable, progressive illness.
OCCASIONALLY while watching late-night TV, waiting for the moment when his hyper-kinetic Parkinson's-plagued body will grant him sleep, Michael J. Fox will be confronted by his former self.
Fox used to skip past it, avoid watching. What do I have to avoid?
Lately, his habits have changed. Sometimes he lingers.
Actor Michael J. Fox will soon head to Australia to fund raise and promote awareness of Parkinsons Disease. Photo: Trevor Collens
But it is two decades since a twitching little finger betrayed the early onset Parkinson's disease within Fox, a disease whose relentless progression now turns the simple act of trying to sit still in a chair into a visible, physical struggle. ''It's like your body, your physical movements are kind of hijacked,'' Fox says.
Every day when he wakes up he asks his brain, ''what kind of day is it going to be?'' and waits for the answer with apprehension.
''You take a measure of how much control you are going to have over what your body does, and how it feels. Your brain has its own agenda, so you have to deal with your mind - two separate things. You have to occupy your mind and not your brain because your brain is not a good neighbourhood.''
When his medication kicks in too hard, he sways and lurches; when it doesn't work enough his face and body freeze up and he cannot speak. Predicting how much medicine to take on a given day is part science, part art, part lucky dip.
''I've kind of got control of it today. But other days I might not, just inexplicably it doesn't work, and those are difficult days.''
When the diagnosis was made in 1991 and his future prospects explained, Fox turned to drinking. ''If I couldn't obliterate the problem, I would obliterate myself, or at least my awareness of what was happening,'' he wrote a few years ago. '
''Medication for the symptoms, alcohol for the feelings.''
Then one day, spurred by his wife Tracy's disappointment in him, he realised he was on a bad path, and quit drinking altogether. This began a transformation that has left him, in his own words ''kind of weirdly optimistic and positive, to the extent that it probably grates.
''There's this aphorism that I learnt when I quit drinking, which is that
my happiness grows in proportion to my acceptance, and in inverse proportion to my expectations,'' he says. ''The more I expect, the more unhappy I am going to be. The more I accept, the more serene I am.''
It wasn't an easy realisation. He wrote in his book A Funny Thing Happened on the Way to the Future that the first years without drinking were ''like a knife fight in a closet''.
But, he says, he has come to realise that Parkinson's actually enriched his life.
''The experience of dealing with the reality of a diagnosis with an incurable progressive illness … once I recognised that and accepted it, that opened [life] up for me in terms of possibilities. You see the entirety of your life in a way that you don't when you myopically focus on your career, or what your last movie did. All of a sudden it's all bigger, the stakes are bigger, the implications are bigger and the possibilities are bigger.
''The only thing you know for sure is that there's no cure for this, it's going to get worse. Given that's what your great truth is, you have to find ways to make things better.''
The word optimism is one he returns to, time and time again.
''It's really important for me to stay positive,'' he says. ''It's not a 'thing' that I 'do', though. I don't have a … what's the word, when you look in the mirror and say positive things about yourself? Affirmation. I don't have any affirmations, I don't have any of that stuff.
My natural state is to look at things as possibilities and as opportunities.''
He traces a lot of this back to his parents - his father a career soldier - both making the most of a tough life with few luxuries. But it's also a practical deal he has made with himself. ''That's the way I look at things - if you focus on the worst case scenario and it happens, you've lived it twice. It sounds like Pollyanna-ish tripe but I'm telling you - it works for me.''
Ten years ago Fox put this positivity to work, creating the Michael J. Fox Foundation, which has raised more than $300 million towards research into treatments for Parkinson's. Not only that, as The New York Times wrote, ''it doesn't just dole out money and hope for the best, it has used its money to take control of Parkinson's research [and] become the most credible voice on Parkinson's research in the world''.
Fox says he doesn't believe celebrities should necessarily use their fame to change the world, though he admires people like George Clooney, Bono and Sean Penn - ''they really see that they've been blessed in wonderful ways, and that they have … an opportunity.''
Once he revealed his condition, he realised he had an obligation to use his fame to help fellow Parkinson's sufferers. His foundation pushes government to turn basic science into potential cures (''one of the things we found when we got in to cure this disease is we found out the system had to be cured''). It pushes pharmaceutical companies to keep working on promising compounds even if the dollars don't quite add up as a commercial venture. And it is close to some exciting breakthroughs, such as preventing the ''dyskinesia'' side-effect that makes medication such a double-edged sword.
Fox says his experience with the foundation has been more fulfilling than being a movie star. But, it is clear from the way his face lights up, the central joy of his life these days is his family - wife Tracy, and their four children.
''What's great about Tracy is she doesn't dramatise her role,'' he says of the actress he met on the set of Family Ties. ''She's quite uncomfortable when people deal with her as a 'rock', or she's asked questions like 'how can you stay with him?' She is like 'huh, he's my husband'.''
Just as the family home didn't have a lot of movie posters on the walls in the early days, these days he keeps his Parkinson's work separate from the kids - they know and understand, but ''it's not a focus in our life''. But he admits he tends to bombard them with advice. ''I have so many things that I say to my kids, I just drive them crazy,'' he says.
He is bringing his adult son Sam with him on his first trip to Australia -in August he will headline a theatrical event in Melbourne called The Visionary Series, where he will talk about his life, his career and how he has overcome the challenges posed by Parkinson's.
But while he's here, he also hopes they can make a pilgrimage to Uluru. In the past he has found calmness and perspective in big natural features like the Rocky Mountains or the Grand Canyon, he says.
''It's such a magnificent thing,'' he says. ''Whatever our issues are, whatever we're working out, whatever, there is something that is a record of millions of years of drops of water … [compared to that] it's just hard to get all twisted up in a knot about whether you've got a reservation at a restaurant.''
As the interview wraps up, Fox thinks back about his more grand statements about life and living, and his instinct to play things down kicks in. ''I hope that wasn't too much mumbo-jumbo,'' he says, disarmingly. I assure him it wasn't.
''I'm not a [motivational speaker] Tony Robbins guy. I don't have a seminar and the speeches, I don't have a package and a tape collection. I just feel this way.''
Staying positive the Fox mantra for battling illness
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