The Givers: Who Inspires Michael J. Fox? A Very Personal Interview
By Marlo Thomas
My father used to say, "There are two kinds of people in the world: the givers and the takers. The takers sometimes eat better, but the givers always sleep better."
The Takers are easy to spot, but I’m always on the lookout for the Givers, because they give me hope. Michael J. Fox is a Giver.
Michael was just 30 years old when he was diagnosed with Parkinson's Disease. By then an acclaimed, award-winning star of both television and movies, Michael was thunderstruck by the discovery of his illness, and his ever worsening symptoms would take the ultimate toll: In 2000, he semi-retired from acting, a career that had brought so many blessings to him and his family.
But Michael did not permit the ravages of a disease to extinguish his spirit. Instead, he decided to fight back rather than lay back. One of the ways he did this was to build the Michael J. Fox Foundation for Parkinson's Research. Celebrating its 12th year, the foundation has funded more than $280 million in aggressively pursued research, ensuring the development of improved therapies for those living with Parkinson’s -- and with the hope of eradicating the disease once and for all.
I have always found people who face extraordinary obstacles in their lives -- and yet discover the power inside of themselves to keep on moving on -- to be the inspiration I need in my life with my more ordinary obstacles. That’s why I decided to create a new series that would profile such remarkable women and men. It’s not just about them -- extraordinary though they are -- but about all of us trying to cut a new path through the brush of challenges we all face.
We're calling the series "The Givers," and I'm thrilled that Michael is our first subject. I spoke to him last week, and our conversation not only inspired me, it filled me with optimism. I'm also excited for you to read it, because I know you will feel the same. Unbowed by his disease and still exhibiting his trademark energy, Michael reminded me not only of the single-mindedness that is fundamental to fighting for a cause, but also of the indestructibility of the human spirit -- one that looks at each new day as another chance to enjoy the magic and the gift of life. If only all of us could learn that lesson.
Here is our conversation. --MT
Marlo Thomas: Maybe it’s a good idea to start at the beginning. What was it like when you were first diagnosed with Parkinson’s disease?
Michael J. Fox: I was in Florida, doing a movie called Doc Hollywood, and I woke up one morning and my pinky was twitching -- and I couldn't get it to stop. It was a little alarming, but I figured that maybe I had done something to my elbow or my funny bone, or that it was just a nerve thing. But when I went to a neurologist to get a diagnosis, he totally shocked me. He said that I had "young onset Parkinson's." I can't say I was devastated because I really couldn't comprehend it. It wasn't anything I could relate to. Until then, when I heard about Parkinson's, it was kind of on the same level as Alzheimer's -- an old person's disease.
So it really it took me a long time to get my head around it. Whenever I got symptoms, I just started drinking -- which got out of control. But even after I stopped that, I was still left with this question of how to proceed, because I had no real way to know what to expect.
Marlo: Explain that
Michael: Like, at one point they told me I had about ten years left of work, and I didn't know how to process that. So I just took on as much work as I could get and flew by the seat of my pants. All told, it took about three years until I started to get serious about it, working with my doctor and dealing with it openly, with my family. But I kept it a secret from the rest of the world.
Marlo: Why did you wait to disclose it publicly?
Michael: Because I wanted to make it part of my family rhythm first, so I could see the way it changed my life and the way it didn't. It was kind of like being stuck in the middle of the road and hearing a bus coming, but not being able to get out of the way, or knowing when the bus was coming or how hard it was going to hit. Finally, I began to understand that the key is just to deal with it. You don’t save a place in the rest of your life for it to take over. You just live your life the way you want to, and it assumes the space that it naturally needs.
Marlo: You've previously said that you thought the disease was going to change your role in the family, but it didn't, right?
Michael: Right. I have a remarkably normal life. It's not a key feature in our family; it's not a big topic of conversation or the white elephant in the room. It's just a feature of who I am and not a big part of my relationship with my kids. I mean, I can't say that they don't have feelings about it, but as it appears to me, it's not a major issue.
Marlo: So what would you recommend to the friends or the family members of someone who is diagnosed with Parkinson's or any such disease? What would you say?
Michael: I would say, "Don't project your feelings about it onto their experience." It's a tricky thing because you want to be there for them and you want to support them in any way that you can, but you can never assume that you know what they really need.
It's like this story I always tell about a lady who told me that her husband had Parkinson's, and that he was "in denial" about it. I said, "What do you mean he’s in denial?" She said, "Well, he insists on skiing and hiking and fishing and riding his bike." I said, "That's not denial. That's life."
Marlo: That's great.
Michael: Yeah, and it's funny because people are like that. It's like when someone says, "Let me get the door for you," and you want to say, "That’s fine -- I can still do doors."
Marlo: Prior to your diagnosis, you were athletic. You played hockey, right?
Michael: Yeah. I still play hockey every now and then, and I still golf. But my biggest exercise is walking my big dog in the park every day. The key is, I don't assume that I can’t do things, I just do them. So, yes, I still have a physical life.
Marlo: Okay, so here you were, finding a groove with your family, and making your condition a part of your everyday life. When did you decide to bring the public into the discussion?
Michael: In 1998. I was working on Spin City and I realized that the only people I was still hiding it from were the people I worked with -- and, in a sense, the audience. That was really the last breakthrough for me -- to realize that I could trust the audience with the information. Until then, I thought, How can I expect people to laugh at someone on TV who they know is sick? -- although I really don’t think of it as a sickness. I think of it more as a condition
Anyway, I did an interview with People magazine and an interview with Barbara Walters. You want to get a secret out? That’s the way you do it. But I do remember thinking, Oh, my God, I let the genie out of the bottle. There is no way of putting it back in.
Marlo: And did you want to?
Michael: Well, it was miserable for a couple of days -- a much bigger news story than I thought it would be. But then a funny thing happened. After a few days, the story stopped being about me and started being about Parkinson's Disease. I began going online into Parkinson's chat rooms -- anonymously -- not saying it was me, but watching the affect my story was having online. That's when I realized that I was part of a community, which I hadn't really thought about. Up until that point, it had been such a solo experience for me. So this was a great awakening for me. The minute I read people saying, "Oh, you have what Michael Fox has," I understood that I'd been handed an opportunity to make a difference, and so I needed to think about what I was going to do moving forward -- and how I could do that most responsibly and effectively. Then I started getting involved in the politics of Parkinson’s and the funding of research.
Marlo: You also testified in front of Congress.
Michael: Yes. And then I met a scientist who said that the science was far ahead of the money.
Marlo: Meaning the science was ready to move forward, but it still needed the funding.
Michael: Right. And I realized that the government was never going to fund the more adventurous stuff, the riskier stuff -- the very stuff that would lead to breakthroughs.
Marlo: Not even at the National Institutes of Health?
Michael: The NIH is more into basic science -- a kind of silo science, where the research stacks on top of itself and doesn't progress forward. We needed a pipeline, not a silo. So I decided to start a foundation, one that is completely devoted to research. And it’s been an amazing ride ever since.
Marlo: What I find so inspiring is that you could have just withdrawn, which would have been perfectly understandable. Or you could have simply put money into it, by creating PSAs. But, instead, you actually dug in and decided to try to transform the landscape of this disease, and the science behind it. That's a huge thing to do. But it sounds like you needed to go through those other stages to get there -- sort of like Elizabeth Kübler Ross's stages of grief: denial, anger, bargaining, depression and acceptance.
Michael: Exactly. And acceptance was the key.
Marlo: And it allowed you to become productive. Everybody is scared of losing any kind of power. Whether it's your mind or your body, your hearing or your sight, you're scared to death of losing it.
Michael: That's really true. But as I say to people all the time -- and at first they don't always believe me -- anything you lose will be replaced by something. You just have to be open to it and not fight it. I truly believe that we have infinite levels of power that we don't even know are available to us. I mean, it was only when I could accept the fact that I had this disease, that I began to think, What haven't I lost? I haven't lost my enthusiasm. I haven't lost my intelligence. I haven't lost my passion for life, my love of my family, my curiosity. And I realized that those things -- unleashed -- are greater in total than that of any kind of illusion of power or control. The moment I understood this -- that my Parkinson's was the one thing I wasn't going to change -- I started looking at the things I could change, like the way research is funded. So far, we've been able to channel about 280 million dollars into research in the last 12 years.
Marlo: Which is amazing. You alluded to your passion and your energy, which are qualities you've always been known for. But I'm sure that some days are tougher than others, right? Days when you just feel like collapsing. How do you pull out of that funk?
Michael: I can honestly say there are no bad days -- meaning, there is just the day that is. I'm not one to say, "Oh, this sucks, but tomorrow will be better." I’m more like, "It is what it is right now, and tomorrow will take care of itself."
Marlo: God, that’s great, Michael. I want to learn how to do that! But surely there have been times when you have felt defeated. When I was doing my research for this interview, I stumbled on that video clip of Rush Limbaugh doing his unspeakably cruel imitation of what he said you look like when you speak. People everywhere were enraged by that clip, but you remained calm. How do you rise above this kind of thing? Do you have some sort of Zen secret that we can learn from?
Michael: No, no -- really I'm five-foot-four, I've dealt with bullies my whole life. He came after me when I was speaking out in support of stem cell research, and the candidates who supported it, like Claire McCaskill of Missouri, which is Limbaugh's home state. At the time, I was actually more than just symptomatic -- I was dyskinetic, as a result of the medication I was taking. And Limbaugh decided that I was faking.
Marlo: So his agenda was political, as well. Did that make his offense even more irritating to you?
Michael: It honestly didn't bother me to have my integrity questioned by someone who doesn't have integrity. And it didn't threaten me. So I just blew it off, because I knew it wasn't going to change what I was doing. The only thing I took exception to was when he mocked the symptoms -- and not for myself, personally, but because I know how touchy the people in our community are about the symptoms, and how hard it is for them to deal with other people’s perceptions of their illness. So to have it caricatured and mocked like that bothered me for those in our community.
Frankly, I was more offended by Limbaugh's recent attack on [Georgetown law student] Sandra Fluke, calling her a slut and a prostitute after she testified in Congress about contraceptives. I was talking to my friend, Donnie Deutsch, about this on CNN. I said, "You know, I'm a husband to a wife, and the father of daughters, and the son of a mother, and the brother of sisters -- and I just really find this offensive." But remember, the bully always appeals to the lowest common denominator. And he won't prevail.
Marlo: Let's move to another aspect of you work -- the fundraising? I fundraise like a whirlwind for St. Jude Children's Research Hospital, and I know it can be equal parts thrilling and exhausting. Do you feel the same way?
Michael: I've learned some exciting things -- mostly, that people really want to help each other; and that, if you can lay out a vision for them -- and that vision is sincere and genuine -- they'll get interested. What's really remarkable to me is how many people we have involved who don't have any connection to the disease. Their interest is in the science, and in the opportunity to follow through on something important -- to complete the sentence. Some of these people are the bankers and hedge fund people. And what’s so interesting to me is that all those years of playing Alex Keaton on Family Ties -- this kind of young, entrepreneurial Republican guy, who is far from who I am as a person -- has paid dividends.
Michael: Yes! A lot of guys grew up watching Alex, saw him as a role model and went into Wall Street. And they now see my foundation as a chance to pay me back for that inspiration and to get involved. They've been a big part of our efforts.
Marlo: That's incredible. In addition to the medical and finance people who work with your foundation, you also have plenty of volunteers, right?
Michael: Yes, we have a program called Team Fox, and it's for volunteers across the country who create events under the umbrella of our organization -- like car washes and pancake breakfasts. We provide the materials that they need, and it has turned into this big thing, bringing in about 15 million dollars over the past two years. And we celebrate the volunteers who have been the most effective at raising money. Witnessing their excitement in getting involved -- and knowing that they’re doing it in service of a foundation that has a clear plan and is on the right track -- is just so fulfilling.
Marlo: I've seen a similar passion from our St. Jude volunteers. It makes me believe that everyone is a philanthropist in their hearts.
Michael: Right. I like to encourage people to realize that any action is a good action if it's proactive and there is positive intent behind it. I tell them, "Do the right thing, and then do the next right thing, and that will lead you to the next right thing after that. This way, you will know what you are accomplishing and that you're making something possible."
Marlo: That's wonderful. And I heard that your whole family is involved. Your wife, Tracy, is on the board of your foundation, and your kids are pretty fierce fundraisers themselves.
Michael: [Laughs] That's right. One morning I woke up and came out of my bedroom, and there were, like, 30 sixteen-year-old girls in my living room making beaded bracelets that they sold for Parkinson's. And my youngest daughter, Esme, who is ten, started a cookie company and raised a bunch of money for the foundation. So, yeah, everybody gets involved.
Marlo: I remember once meeting a dad at St. Jude who told me that, before he came to the hospital, his child had been given four months live. The dad told me, "My wife and I had already picked out the funeral music for our son." That moment was a huge turning point for me, and it made me double my efforts on behalf of the hospital. Have you ever experienced a similar moment in your efforts to vanquish Parkinson's?
Michael: For me, it's always been meeting my fellow patients in the Parkinson's community. There's a connection that's hard to explain. It's the feeling I get when I see someone shuffle up to meet me, or say something, and I can instantly tell by the cant of their head or by the movement of their arms -- and these are people who aren't even full-blown symptomatic -- that they're one of us. And the look they give me, it's not just gratitude -- I don't care about the gratitude -- but solidarity. And shared optimism. And a resiliency that just makes me think we're doing the right thing, and that this truly is a community.
Marlo: We asked our community here on Huffington Post if they had any questions for you, and we were swamped with responses -- and not just because you're on this mission to fight Parkinson's. They're interested in you because they’ve loved you for years and years and still want to know everything about you. One of the questions was, "What makes you laugh the most?"
Michael: I always laugh -- but I'd have to say that my kids make me laugh the most. That's because you see that their sense of humor is kind of a reflection of your own, but they always add a new twist from their experiences. My youngest daughter, we call her "Cockamamie" because she always has some cockamamie scheme. Like, she'll come into the room dressed in a tutu with a football helmet on, holding a jar of pickles. And then she’ll come back five minutes later wearing face paint and holding a magic wand -- and the tutu is now on the dog. And all you can do is laugh and say, "Oh, another Cockamamie scheme!"
Marlo: She sounds like she's got her dad's comic DNA. Let me ask you this, Michael: For all that you've been through since you first learned about your Parkinson's, you still insist that you're "privileged" to be in your situation. Explain that.
Michael: I don't have to worry about losing my job. I don't have to worry about being denied insurance because of an existing condition. A guy once told me a story about going to a wine store and trying to buy a bottle of wine, and being told by the clerk that he couldn't have it because he was drunk. And the guy was just symptomatic! I don't have to worry about any of those things. A lot of people have said to me, "You can just go away and get treated and create a life for yourself, apart from all this." But I look at it the other way. I believe that my position and my good fortune actually compel me to do the opposite. I mean, don’t get me wrong -- I never envisioned myself as a poster boy for anything and I'd rather be healthy, I'd rather not have this. But what a great balance it is -- what a great opportunity and privilege it is being with this community, and having the chance to provide intuition and inspiration.
Marlo: I once wrote a book about how the right words at the right time can really change your life. Since all of this began for you, has anyone said something that helped you accept your condition and turn this around?
Michael: Yes, there are many examples of that. But I think the most important words were at the very beginning. When I first heard about my diagnosis, I was so angry. And Tracy just looked at me, and said simply, "In sickness and in health."
Marlo: Bless her heart. You’re a lucky man.
Michael: Yes I am. So I knew that she was with me for the long haul, and she has been ever since. But it's not necessarily words, it's the connections I make. I mean, people come up to give me hugs that just go down to my very spine. And the fact that, sometimes, we’re both shaking makes it even more emotional. This is what inspires me. This is what keeps me going.
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