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Michael J. Fox reflects on his career and life with Parkinson's

SACHA PFEIFFER, HOST:

When Michael J. Fox describes his Parkinson's disease in his new documentary, he's extremely blunt. And he has said - and I'm censoring this slightly to make it radio-friendly - quote, "Parkinson's didn't just kick me out of the house. It burned the house down." I talked with him this week about his life these days, and he told me every day with the disease is different.

MICHAEL J FOX: They look at me - you have two noses (ph). Well, we have two noses, and they say, well, we have nine noses and a tongue sticking out of your ear.

PFEIFFER: You can see he hasn't lost the sense of humor that made him famous. He says his joking started as a defense mechanism.

FOX: When I was a kid, I was so small, and I was always getting chased around and beat up, which is why I was fast and why I was funny as much as I could be. If you could make a big guy laugh, he's less inclined to beat you up.

PFEIFFER: A warning here that Fox uses some swear words during this interview. His documentary includes many funny clips from his many funny movies. And as you watch some of them now, you realize that when he was on screen in the '90s, he was hiding a tremor developing in his left hand. He did that by fidgeting a lot and keeping that hand busy, but eventually, he couldn't conceal it anymore.

FOX: I was getting to a place - I was doing "Spin City," and I couldn't hide it anymore. And I had press and certain media people kind of at my heels. And besides, I just wanted to relax and just - as much as that makes sense with Parkinson's, I wanted to just give myself a break and see what happened. So I did, and I told Barbara Walters and People magazine, and everybody in the world knew. And then I went online, and I discovered that there was a great appetite in the patient community for Parkinson's for someone to come in and take that lead. And they almost celebrated it when I announced. And people said, did that bug you? And I said, no, it endeared me to them. It endeared them to me, I should say. I thought, of course they want a champion.

PFEIFFER: In terms of the kind of details of your life that you share, in a lot of the documentary, you have an obvious injury on your cheek. And you eventually explained that you fell, and your face hit a piece of furniture.

(SOUNDBITE OF DOCUMENTARY, "STILL: A MICHAEL J. FOX MOVIE")

FOX: It's part of the deal - is that I fall. It's the real deal.

UNIDENTIFIED PERSON: Parkinson's and gravity are real.

FOX: Yeah, gravity is real, even if you're only falling from my height.

UNIDENTIFIED PERSON: (Laughter).

PFEIFFER: And you explain that some people say, Michael, be careful. And you say it's not about being careful. It's about Parkinson's. It seems like you have advanced to a more grim stage of this disease to have to deal with that so often.

FOX: Well, and now the broken cheekbone seems so quaint compared to some of the stuff I've dealt with in the last couple months, the last couple years. I had spinal surgery which was not related to Parkinson's but had to do with a tumor, a benign tumor on my spine. And from that, the way it connected was I had to learn to walk again. And I was already dealing with Parkinson's making my walking difficult, so then it was - you know, it was compound. And so I fell. I broke my arm, and I broke my other arm, and I broke my elbow. I broke my shoulder, dislocated both shoulders, had one replaced. I'm forgetting something. It was just a litany of damage. So it's kind of frustrating 'cause people say, be careful, and you say, I am being careful. And then you - then they walk down the hallway and see you lying on the floor. And, you know, I screwed up, but I don't really believe I screwed up. It's very difficult to place feet when you have no sense of what they feel like or where they're going.

PFEIFFER: Right.

FOX: It's hard to - when I have an opportunity to do interviews like this, it's always difficult to express, yes, it's hard. Yes, it's challenging. Yes, it even makes you sad sometimes, and sometimes it makes you angry. But it's my life. And I'm uniquely equipped to live this life. I'm uniquely equipped to mine it for the gold that's in it. And I don't mean money. I mean gold - real meaning and purpose. And so for that, I'm so grateful. And when I say I don't want to mess it up for people, I want to say, having recognized that, I see what this could mean. I see what this could do. Just the progress we've made in the last 20 years - it's astounding.

PFEIFFER: When you said you're uniquely qualified to do this, you mean because of - you have the platform and the resources to do it.

FOX: And the disease and my tone. That's the other thing about Parkinson's - is the cement face.

PFEIFFER: Right. It immobilizes your face in a way.

FOX: Same thing vocally. You go like, well, this is the best news I ever heard in my life. This is really exciting.

PFEIFFER: Very flat.

FOX: Very flat. So I'm having a good time, if you can tell it or not.

PFEIFFER: The filmmaker, Davis Guggenheim, has said that the only thing you asked of him when he was making this documentary was no violins. What did you want him to avoid doing?

FOX: It's funny because he said - at first he thought I said no violence.

PFEIFFER: He thought you said no violence.

FOX: Yeah. And how violence would fit into this story I don't know other than physical, you know, floor-upon-head violence. But, yeah, and then we talked about it. And what I meant was violins. What I meant was there's a thing that I found with - and I had a chance to do this in the aughts and in the teens. I did some guest shots on various shows playing characters that, in some way, were challenged. And one of them was on "Rescue Me," Denis Leary's show, where I played a former extreme athlete who was in a banal kind of car crash, but he got paralyzed. And he was angry. And I did a character on "The Good Wife" who was a lawyer who used his symptoms, his Parkinson's symptoms, to manipulate juries.

And I loved those characters because, quite frankly - and I know you're going to say, well, you can't say this on your show, but I'm going to say it anyway - people with disabilities can be assholes, too. And it's important to know that. It's important to know that we're all humans and we're all going through the same thing. And that person you see struggling with the wheelchair on the curb still has to make their rent. You know, there's real-world issues besides the ones that are unique to them. You see sometimes, in movies and television, someone with a disability struggling to perform some normal task like tie their shoelaces or something. And as they struggle and as they get the bunny ear through the hole, the music starts to swell. And it's violin, the concerto, and builds up until the moment of success. And they've got a tied-up shoelace, and the music is soaring. And I don't like that.

PFEIFFER: At the end of the film, as the credits are rolling, there's a beautiful song.

FOX: Vampire Weekend.

PFEIFFER: Yeah, exactly. That was it. It's - in fact, someone wrote it down for me - "Harmony Hall." I'm sorry, but I hadn't heard it before.

FOX: Yeah.

PFEIFFER: But it's gorgeous.

FOX: It's - I don't want to live like this. I don't want to die.

PFEIFFER: Yeah, that line - I don't want to live like this, but I don't want to die. And I thought, how much is that channeling your own thinking?

FOX: Well, it's great. I wrote about that in my last book, about that concert. I can always summon up that memory of Tracy next to me...

PFEIFFER: Your wife.

FOX: ...In Madison Square Garden dancing to that song and thinking, yeah, you're f*****g damn right. I don't want to live like this, but I sure as hell don't want to die. I mean, with all these riches and this family and this love - I mean, that's really what it comes down to. I mean, there's still a lot of people I love and a lot of people who love me, so where am I going? I don't know where to go. I want to be with them.

(SOUNDBITE OF SONG, "HARMONY HALL")

VAMPIRE WEEKEND: (Singing) ...Of wicked snakes inside a place you thought was dignified. I don't want to live like this, but I don't want to die.

PFEIFFER: That's Michael J. Fox. His new documentary is "Still: A Michael J. Fox Movie," now streaming on Apple Tv+. Thank you. This was a wonderful documentary.

FOX: Thank you - appreciate it.

(SOUNDBITE OF SONG, "HARMONY HALL")

VAMPIRE WEEKEND: (Singing) Ooh, I don't want to live like this, but I don't want to die. Within the halls of power lies a nervous heart that beats like a young pretender's. Beneath those velvet gloves, I hide the shameful crooked hands of a money lender. Transcript provided by NPR, Copyright NPR.

Sacha Pfeiffer is a correspondent for NPR's Investigations team and an occasional guest host for some of NPR's national shows.
Megan Lim
[Copyright 2024 NPR]