Dr. Sue Goldie and New York Times reporter John Branch describe how a private, years-long conversation about her Parkinson's disease became public.
ANDREW LIMBONG, HOST:
Dr. Sue Goldie is a physician and leading public health expert. She teaches at Harvard. She's a MacArthur fellow, which I think makes her a genius. She is also a triathlete and is now over 60. All these details are part of her life, but there is one detail that threatened to consume her entire personality, so for four years she kept it a secret from almost everyone.
For the past two years, she has been talking to a journalist about her experience with a neurodegenerative disease – the ups and downs, but in private. It went public this week. An article by reporter John Branch in The New York Times is headlined “Sue Goldie Has Parkinson's Disease.”
John Branch and Dr. Sue Goldie join us. Welcome to ALL THINGS CONSIDERED.
SUE GOLDIE: Thank you.
JOHN BRANCH: Thank you.
LIMBONG: Sue, you were diagnosed with Parkinson's disease in 2021, but you kept it a secret until now, right? You only told close relatives and friends. Why did you want to hide it?
GOLDIE: Well, I don't know, actually, I wouldn't use the word “hide”, even if you could say that if I didn't tell anyone, I would hide it. I think I was really trying to give myself space and time to fall apart, to panic, to think about what this meant for me. And that was really the process that I was going through, I was just trying to figure out how I was going to be okay, and that was quite a big task as opposed to including anyone else in it.
I think you need to think about what you want to get out of disclosing information? I don't even think I knew while I was going through it and starting to open up what it was that I wanted the other person to tell me. I think it's complicated in terms of what you're really looking for.
LIMBONG: So, John, when did you come on the scene? How did you get involved with Sue?
BRANCH: I found out about Sue in the spring of 2023, I think. A journalist I knew somehow knew her brother, I think. And he told me that there was this woman, a Harvard professor who had recently been diagnosed with Parkinson's disease, who had completed an Ironman triathlon and thought this story might be of interest to me. I eventually contacted Sue.
And I remember very, very well our very first Zoom call. I told Sue that I wasn't really interested in this particular story, no matter how inspiring it was – that she finished an Ironman – and luckily Sue agreed. I think we both saw that the story was about the journey, not the finish line.
LIMBONG: So, Sue, why did you decide that now was the time to publish this, to make it public?
GOLDIE: You know, I think just listening to what John was just talking about when we met, I think back to the first time I talked to John in those couple of years. I didn't really think disclosure was the big thing I thought it was. I thought that I had this disease. I resist. I'm terrified. What does this mean for me? – everything a person feels when they panic and learn something about themselves that changes their lives.
I think over time, as we went through this process, one of the questions that really became relevant was the question: who do you tell? Why are you telling them? What is the nature of your relationship? And how does this become part of your daily life? And in this respect, relationships at work, relationships in the professional space were very different from the relationships that I had in a more informal space.
I think what always drives me is what can I do from where I sit? And I just felt like I was a doctor. I am a public health scientist. I'm usually a really good conversationalist. You might not think so today, but I usually do.
LIMBONG: No, yes.
GOLDIE: I'm a passionate educator. I always want people to be proficient in the language so they can participate in the conversation and expand the circle of people who have a voice. And I have a disease. Like, I feel the horror that other people feel. What does uncertainty mean to me? And I just felt like the advantages that I had with those first qualities was something that I could do. But I needed everything to be in order before I could even think about what form this would take.
LIMBONG: Yes. I guess, like literally every other relationship, this relationship wasn't all sunshine and roses. There were some rough spots. There were difficult times. There was some tension, right? Is this a fair assumption?
GOLDIE: Of course. There were some bumps.
BRANCH: Yes, there were bumps. There were times when I felt like I had lost her trust or she felt like I couldn't hear her. Sue is in a very, very, very difficult situation because the journalistic ethics by which I live and by which The New York Times does journalism does not allow me to show her the story before it is published. So she reveals to me the wildest parts of her life, and then I'm going to turn around and put it through a filter and show it to the world, and she doesn't know exactly what I'm going to show. And I tried to be understanding about it, but I know it caused her a lot of anxiety.
So, I think we've had some discussions in the last couple of weeks where I've been trying to give her some hints about what to expect without specifying what the story is about, it's been difficult. And I was just glad she didn't pull the plug at the end.
LIMBONG: Well, Sue, what did you think of this article?
GOLDIE: That's what happened when I read the article. I went to Charles where I run and knew I would have reactions to little things. I mean, we're very open. Like, John, this really pisses me off. Like, I don't think of the word that way. Like, we openly talk about such things with humor. So I read it, had my reaction, and ran a mile. And then I returned to my car. I read it again. I ran a mile. At mile 10, I felt like I could just read this story, like, read it, and I was just sobbing. I just cried.
And, you know, the only thing he always told me: I don’t know if you’ll like it. It's not even a relevant question, and I don't understand what he means because I can't tell you if I liked it. It's just… that's not even a question worth asking. But does this story… does it make me feel less alone? I feel like I'm seen, that I'm strong, but at the same time I'm scared? – that I am determined, but I will also, you know, fight? And so it is.
LIMBONG: This is 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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