ANDREW LIMBONG, HOST:
Dr. Sue Goldie is a physician and a leading expert in public health. She teaches at Harvard. She's a MacArthur fellow, which I think makes her a genius. She's also a triathlete, and she's now in her 60s. These details are all parts of her life, but there's one detail that threatened to swallow up her whole identity, which is why she kept it a secret for four years from mostly everyone.
For the past two years, she's been talking to a journalist about her experience with a neurodegenerative disease - the ups and downs, but in private. This week, she went public. Reporter John Branch's story in The New York Times is titled "Sue Goldie Has Parkinson's Disease."
John Branch and Dr. Sue Goldie join us now. Welcome to ALL THINGS CONSIDERED.
SUE GOLDIE: Thank you.
JOHN BRANCH: Thank you.
LIMBONG: Sue, you were diagnosed with Parkinson's in 2021, but you'd kept it mostly a secret until now, right? You were only telling close family and friends. Why did you want to hide it?
GOLDIE: Well, I don't - actually, I wouldn't use the word hide, even though you might say, if I didn't tell anyone, I was hiding it. I think I was really trying to give myself room and time to fall apart, to panic, to think about what it meant for me. And it really was a process that I was going through where I was just trying to really figure out how I could be OK, and that was a big enough task as opposed to including anyone else in that.
I guess, you have to think about, what do you want to get from disclosure? I don't even think I have known, while I was going through this and as I was starting to disclose, what exactly I wanted the other person to say to me. I think it's tricky in terms of what you really are looking for.
LIMBONG: So John, when did you enter the picture? How did you link up with Sue?
BRANCH: I learned about Sue, I guess, in the spring of 2023. A journalism acquaintance somehow knew her brother, I guess. And he told me that there was this woman who was a professor at Harvard who had been recently diagnosed with Parkinson's and who had finished an Ironman triathlon and thought that might be a story that might interest me. So eventually, I reached out and connected with Sue.
And I remember very, very clearly our very first conversation over a Zoom call. I said to Sue that I don't have great interest in that particular story, as inspiring as that might be - that she finished an Ironman - and thankfully, Sue agreed. I think we both saw that the story lied in the journey and not in the finish line.
LIMBONG: So Sue, why did you make the decision that now would be the time to publish, to make this public?
GOLDIE: You know, I think just hearing what John just talked about when we met, I'm thinking back to when I first initially talked to John in that couple of years. I didn't really think of disclosure as the important thing on my mind. What I was thinking of is - I have this disease. I'm fighting back. I'm terrified. What does this mean for me? - all of the things that someone feels when they are panicking and they learn something about themselves that's life-changing.
I think that over time, as we went through this process, one of the issues that really permeated was, who do you tell? Why do you tell them? What is the nature of your relationships? And how does this become part of your daily life? And in that respect, the relationship at work, the relationship in your professional space, is - was quite different than the relationships I had in more informal spaces.
I think for me, what always drives me is, what can I do from my perch? And I just felt that I'm a physician. I'm a public health scientist. I'm a really good communicator, usually. You might not think so today, but I usually am.
LIMBONG: No, yeah.
GOLDIE: I'm a passionate educator. I always want people to have the language so they can be part of the conversation to broaden who has a voice. And I have the disease. Like, I can feel the terror that other people feel. What does it mean for me, the uncertainty? And I just felt, the advantages I have with those first few attributes, there's something that I can do. But I had to be OK before I could really even think about what shape that would take.
LIMBONG: Yeah. I'm guessing, like literally every other relationship, this wasn't all sunshine and roses. There were some bumps. There were some hard times. There was some tension, right? Is that a fair assumption?
GOLDIE: Sure. There were bumps.
BRANCH: Yeah, there were bumps. There were times where I think I lost her trust or she felt I wasn't hearing her. Sue is in a really, really, really tricky situation because the journalistic ethics by which I live and by which The New York Times does journalism doesn't allow me to show her the story before it's published. So she is exposing to me the rawest parts of her life, and then I'm going to turn around and put that through a filter and show that to the world, and she doesn't know exactly what I'm going to show. And I tried to be very sympathetic to that, but I know it created a lot of anxiety for her.
And so we had some discussions, I think, the last couple weeks, when I was trying to give her some hints about what maybe to expect without being specific about what the story was, that were tricky. And I was just glad that she didn't pull the plug at the end.
LIMBONG: Well, Sue, what did you think of the article?
GOLDIE: Well, here's what happened when I read the article. I drove to the Charles, where I run, and I knew that I was going to have a reaction to small things. I mean, we're very open. Like, John, that really pisses me off. Like, I don't think of that word like that. Like, we talk openly about stuff like that with humor. So I read it, and I had my reactions, and I ran a mile. And then I came back to my car. I read it again. I ran a mile. At 10 miles, I felt like I could just read the story, like, read it, and I just sobbed. I just sobbed.
And, you know, the one thing he's always said to me is, I don't know if you're going to like it. It's not even, like, a relevant question, and I so understand what he means by that because I couldn't tell you if I liked it. It's just - it's not even - it's not the right question to ask. But does this story - does it make me feel not alone? Does it make me feel like I'm being seen, that I'm strong, but I'm also terrified? - that I'm determined, but I'm also, you know, going to struggle? And it does.
LIMBONG: That's Dr. Sue Goldie and New York Times reporter John Branch. Thank you both for joining us.
BRANCH: Thank you, Andrew.
GOLDIE: Thank you, Andrew.
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