Michael J Fox

"Michael J. Fox
By Patti Davis

People sometimes veer into their own legacy after being blindsided by fate. Michael J. Fox is one of those people. Diagnosed with young-onset Parkinson's disease in 1991 at age 30, he spent the next seven years working as an actor and keeping his condition secret from everyone except those closest to him.
He could have been forgiven for never disclosing it or for hiding once the symptoms became obvious. Instead, in 1998 he told the world. Then he stepped onto the front lines of the effort to find a cure. Stem-cell treatment, he learned, has the potential not only to cure the disease that has afflicted him but also to treat other tragic diseases, such as Alzheimer's and ALS. Testifying on Capitol Hill in 1999, the effects of Parkinson's clearly visible, he spoke about others with the disease—people who are too embarrassed to leave their homes or who have found themselves suddenly helpless, stranded in bathtubs or beds, unable to move.
He could certainly have been forgiven for lashing back at Rush Limbaugh, who, during the 2006 campaign, accused Fox of faking his symptoms in a TV ad endorsing Claire McCaskill, Missouri's Democratic candidate for the U.S. Senate—and, in a reprehensible demonstration of cruelty, imitated him. But Fox, 45, rose above it with a gallantry of spirit that also cannot be faked. He is to be celebrated for his work, his kindness, his humor under duress, and for a noble heart."


INTERVIEW
http://www.cbsnews.com/stories/2006/10/26/eveningnews/main2129702.shtml

Well, first thing, he used the word victim, and in another occasion, I heard him use the word “pitiable. And I don’t understand, nobody in this position wants pity. We don’t want pity. I could give a damn about Rush Limbaugh’s pity or anyone else’s pity. I'm not a victim. I'm someone who’s in this situation. I'm in this situation with millions of other Americans, whether it’s like I said, for Parkinson’s, or Alzheimer’s, or ALS, or diabetes or spinal cord injury or what have you. And we have a right, if there’s answers out there, to pursue those answers with the full support of our politicians. And so I don't need anyone’s permission to do that. As far as democratic politics go, you know it’s kind of funny, because the argument that I heard from that quarter, was first, that I was manipulating it, that I was a con-man essentially, and I didn’t have the symptoms and was putting them on, so I was perpetrating fraud. And when he backed off then, then it became that I was a dupe of the, a shill for the Democrats, that I was being exploited. And the truth is, I've been involved with this issue since 2000. And in the meantime, separate and apart from my political involvement, I've started a foundation that’s raised $85 million for research and is the second leading fundraiser for Parkinson’s research after the federal government. And um, you know, I'm not a Johnny-come-lately. No one plucked me off the apple cart to come and do this. I mean, I believe in this cause. I’ve put a lot of my life and energy into it, and we're serious about it.

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KC: I want you to help people understand something. What about research on adult stem cells?

MF: It’s fantastic.

KC: What about research on stem cells that have been culled from embryos and may be able to be produced synthetically. In other words, this is such a political hot potato as you well know.

MF: The point of it is that the cells that we're not using, that are being wasted, hundreds of thousand of cells that are left over from in-vitro fertilization are being thrown away, are being wasted they are not going to become life, they are being thrown away so in that sense people say protecting the unborn, they are going to be destroyed anyway- so lets use those cells to protect the unborn that are gonna be born with diabetes that are going be born with pre- genetic disposition Alzheimer's or Parkinson's or are gonna be injured as children, or have spinal cord injury. That's the pro-life position because those cells are going to be wasted that's what people need to understand- where was the outcry when in-vitro fertilization was started 20 years ago- cause this has been going on for 20 years hundreds of thousands of these cells have been destroyed ever year for 20 years and all we're saying is if we're going to do that Lets use that to help people, let's use that to save lives

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You know, we are talking about saving lives. I mean, it doesn't get bigger than this, this is not politics, this is life.

KC: Are you going to be doing more of this? First of all, let me ask you this: is this tough for you to do?

MF: It's tough. It's hard on my wife too, she is taking one for the team. She's got the four kids at home, and gets them off to school everyday and all that so.

KC: But as your symptoms become more severe and the medication becomes less efficatious as the years go by, how tough is this for you to sit here and talk to me like this?

MF: Honestly, I mean, I really feel this: That you get in your life very few chances to make a difference. And I really feel privileged to do this that I get a chance to do this. But having said that, it’s not pretty. It’s not pretty when it gets bad. I’ve learned to throw vanity out the window. I’ve had enough years of people thinking I was pretty and teenage girls hanging my picture on walls. I’m over that now. So it’s tough to so some things, but as I said, the chance to just get people for 2 minutes, to go. This is big. This is not a wedge issue, this is not a thing. This is like who we are as a country and how we feel about our people and about the majority and respecting the minority, but moving forward with what they need and what they want. I want to make that point too, that people that are against stem cell research, embryonic or otherwise, whatever, I couldn’t respect them more and they prayed on it and they’ve thought about and they can’t get their head around it or their heart around it, then great, fantastic. I admire them and I respect them. All I have to say to them respectfully, if there was a majority that all prayfully and thoughtfully and emotionally and intellectually and in every other way, weighed this and cam eon the other side, and said ‘No, I think this is the right thing to do,’ to very carefully tread these waters, to save these lives, then you have to respect that too. And I don’t resort to name-calling or inflammatory language or, mocking, or whatever you need to do to just have a discussion about it. And we’ll see what happens."

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I switched the TV on at lunch and randomly flicked to 'Into the Actor's Studio'... Michael J Fox was being interviewed.

As the credits rolled up the screen, I found myself moved to tears.

There is something really unifying about shared experiences.

I think that the most debilitating thing about any disease is the feeling of being alone. As much as people can offer you sympathy and pity, the thing you crave, and the thing that gives you the most comfort is understanding.

It's the knowing look in another's eyes that confirms that it is hard, that acknowledges the inarticulate feelings and affirms that they are ok, that knows what it is to be you right now, without you speaking a word. That is comfort.

Having people like that in your life becomes even more important as you become more and more prone to self-indulgent pity. Wallowing serves no purpose. It is looking up and seeing others who are dealing with worse ailments that knocks some sense into you. You realise that you cannot put your life on hold and latch onto the person you used to be, the person who grounded who they were in what they did.

Being the person you are without any masks is the most frightening thing. Because you have nothing to hide the flaws of who you are behind. You are vulnerable.

But you also live deeper.

Things affect you more. And that can be frustrating. But refining.