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HAVE YOU COME TO A SPIRITUAL PERSPECTIVE ON THIS? The spiritual part was a result of not having said at the beginning, 'Okay, I'm going to figure this out and come up with a game plan.' Instead, I was led into it by being open in a really simple way. WHAT DOES 'SPIRITUAL' MEAN TO YOU? Spirituality is dealing with every minute. What surprised me were these moments of grace, like having the twins, making decisions based on faith - that's not religious, just faith. When things started to turn the other way, I said, 'This is just not worse; it's so much better.' I realized I was responsible neither for getting better nor being bad. DO YOU BELIEVE IN DESTINY? I do and don't. I always shunned this New Agey stuff. But knowing how I've come to see the world, well, I still don't embrace it, but it is interesting. This feeling of being hijacked is disturbing. You have no choice but to find peace with it. When I say I've found that peace, acceptance, people say, 'That's New Age mumbo jumbo.' Well, fuck it. You have to get somewhere with it. AND, WHERE, SPECIFICALLY, HAVE YOU GONE? Everything is really about now. Right now. When you have a long-term illness, you are in another country. You have a different passport; see things differently. People grieve so much about being misunderstood. 'Nobody understands me.' Well, you know what? They're not going to. The person who loves you more than anyone in the world thinks about you, purely, 10 seconds if you're lucky. I'm not being derogatory. It's simply that you are responsible for your own experience, which is one reason I'm writing a book - to lay out my experience. If you are interested, here it is, but I don't need you to understand it. I'm not disregarding whether or not you care, I just don't require it. HOW HEALTHY. [Laughs] Isn't that ironic? DO YOU BELIEVE IN GOD? Yeah, though strictly speaking, no. Did you ever hear of the Mandelblot set? WHAT IS IT? It is fractal geometry, art - a formula for chaos that can be represented in a shape. The more you go into this shape, the more it repeats forever. Through it, they can find the formula for a snowflake, an iceberg, a leaf, any irregular shape in nature. In other words, there is a science behind chaos. SO EVEN CHAOS HAS ORDER. Yes. That's God to me - the sense that everything is figured out, has a purpose. Do I believe that someone sits down at a desk and says, 'Here's the script for John Smith's life'? No, I do not have that naïveté. YOU UNDERSTAND PEOPLE MIGHT SEE DESTINY AT WORK, THAT YOU'VE BEEN CHOSEN TO SPEED THE WAR ON PARKINSON'S. Some in our community get comfort from that; in fact, they speak explicitly about God, this being my legacy, purpose. I don't know about that. The minute I look at myself as anything more than this guy who has Parkinson's, it can drive you crazy. My life has been front-loaded with blessings. Sure, I have Parkinson's, but Tracy and I, my kids, don't have to worry about money, getting people to help. Think about another 39-year-old guy who's got three kids, a mortgage, can't tell his employer because he may lose his insurance. He's really got problems. I'm freed up to help out; I'm lucky. In the end, I just show up every day, do the best I can, try to make the right decisions. Looking back the past two years, I see an impact - Parkinson's was on the cover of Newsweek. I get that, but in the same way I did when everything was horrible, I don't take it personally. It is not about me. [Laughs] But, having said that, it's a pretty clever idea. THAT GOD OR SOMEBODY PICKED THE RIGHT MESSENGER? I don't know if I'm a messenger; I don't know what I am because that requires looking back - being a means to an end. All you've got is the means to the means - even if they suck. The end here, I hope - and I believe it based on what I've heard - is that there will be a cure very soon, within my lifetime. WHAT WOULD BE A CURE TO YOU? That's an interesting word, because what is a cure? If you can get me something where my symptoms are negligible and progression is halted, I'll call that a cure. I'll give you the day off. If we can get to that point where we give people that relief, that rescue, that will be spectacular. LAST SPRING YOU INAUGURATED YOUR OWN PARKINSON'S FOUNDATION WITH JOAN SAMUELSON, WHO HEADED UP THE PARKINSON'S ACTION NETWORK. WHEN YOU GOT INTO THE POLITICS OF PARKINSON'S, WHAT WAS YOUR IMPRESSION? I was shocked at how underrepresented and underfunded it was, and surprised at how political the organizations in place were. They were doing good work, but there was no fabric. And that saddened me, because I was at a loss as to how I could get involved. If I was being viewed on some level as currency, I did not want to bankrupt one and enrich the other by my involvement. Then I met Joan Samuelson, whose Parkinson's Action Network had a mission I understood: Go sit in front of people who decide where the money goes. So in September '99, I testified with Joan in front of Arlen Specter's committee. Later, Joan and I were walking through the halls of Congress when she suddenly started to cry. I said, 'Why are you crying? We were just in a room with 13 major Republicans who up to now you felt were unsympathetic, and we actually had time with them.' And she said, 'The point is, this has never happened before. I have no reference for it.' And I said, 'Well, it is what it is. Let's just try and use it.' I got a lot of feedback on that day from people within the Parkinson's community, saying they felt empowered. I saw a rise in awareness, which I did not take personally. I figured it was just the result of what Joan and others had been doing. YET BY MAY, THE TWO OF YOU HAD THE MICHAEL J. FOX FOUNDATION FOR PARKINSON'S RESEARCH UP AND RUNNING. We got started in a big hurry because there was this artificial timetable. Before Christmas I asked Joan if PAN, which is purely an advocacy entity, had done any work on research. I said, 'I go to restaurants and someone will come up and lay a $10,000 check in my hand. If I help you raise the money, do you have an idea of the research agenda in Parkinson's?' Joan walked me through the research, who's doing what, where the government is putting its money. We decided that we wanted to break it down to its crudest form: Go to the government and say, 'We are asking for federal funds. We're also trying to raise money from the private sector. We will show you where we are putting our money and encourage you to do the same, because patients and advocates haven't been consulted on this.' It's unanimous in the scientific community that a cure can be found. We want the government to seize the opportunity and fund it. SO THE END GOAL IS THAT YOUR FOUNDATION MONEY WILL LARGELY GO TOWARD RESEARCH? Eventually, our money will go into research. But we've been so heavily involved in start-up, which is why I've been putting in my own money. If somebody says, 'Why are you doing so much bookkeeping?' I can say, 'Well, a lot of it I floated.' Anyway, last January I called Joan again and said, 'You'll probably hear on the news that I'm quitting my job. What do you want to do about that'. The truth is, I want to focus on my family and speed up this process. Given that my whole impetus came from you, should we not do this together?' SHE MUST HAVE CRIED AGAIN. [Laughs] On a whole different level. There was no way I could have known my quitting was going to get that kind of attention, but we decided to rush the foundation in place to coincide with the final episode of Spin City, to take advantage of any synergy. It doesn't take a lot of humility to realize that on a certain level it isn't personal. It's not about a TV actor, for Christ's sake. It's about people hoping that something is going to happen. But more than hope, it's action. Hope is a concept; action is a plan. WHAT MAKES YOUR FOUNDATION DIFFERENT FROM OTHERS? We're so nascent it's hard to know, but the key is this is not a time-neutral issue for us. Joan is 15 years out of diagnosis. I'm 10, maybe 13 from actually having it. For us this isn't pure philanthropy. There's an urgency, which gives us real energy. YOU'RE WRITING A MEMOIR, WHOSE WORKING TITLE IS 'LOSING YOUR BRAIN WITHOUT LOSING YOUR MIND'. WHY? Going through this, being struck by people's reaction to it. Because I lived with it for seven years before telling anybody, anything that I said about having Parkinson's was not some knee-jerk reaction, it was very considered, very much part of the way I felt. At this point in my illness, nothing is reactive. EXCEPT THOSE WHO CAME UP TO COMFORT YOU. Yes. Often you hear this kind of news simultaneous with, or shortly after, the person himself hears it. And people react accordingly. So it required my reassurance, my half-assed reassurance - that is, 'Yes, it sucks, and then what?'. IS THE WRITING CATHARTIC? Absolutely. I'm writing this book because I have to, describing things that had only existed as feelings - breaking them down into words, decoding. Because this experience has been so encrypted - feelings, reactions, instincts - it's not about words. I'm not complaining or whining, just stepping back and taking a look at it. I was so worried about that other shoe dropping - well, sometimes it has. And you survived it. We survived it. AND OVERCAME THE FEAR. What am I going to be afraid of? Yeah, there's loss, but there's also gain. Someone could say that's a bunch of gobbledygook, but it's not. My life today is a much more vital life than just being the boy prince of Hollywood. It is reality. I've never been more alive, more excited. I used to be more of a go-along, get-along guy, happy-go-lucky. But now I have so much joy in my life because I am so much in my life. [Laughs] I'm either in - or not. Before, so much stuff was done for me. I have never been more alive. If someone said that I could be the person I was 10 years ago, I'd have to say no. I don't want to take that back. This is a bumpy ride - no question - but it is the ride I'm on. By Nancy Collins Copyright 2000 Hachette Filipacchi http://www.georgemag.com/xp6/George/Features/1000/Interview.xml janet paterson 53 now / 44 dx cd / 43 onset cd / 41 dx pd / 37 onset pd TEL: 613 256 8340 URL: http://www.geocities.com/janet313/ EMAIL: [log in to unmask] SMAIL: PO Box 171 Almonte Ontario K0A 1A0 Canada