Susannah Cahalan

Susannah Cahalan:

Theodore Roosevelt actually came up, the whole "man in the arena" quote, and it was just a reminder that I'm daring greatly and I'm in the arena. And that's... The process of doing is what matters, not the outcome.

Ted Roosevelt:

Welcome to Good Citizen, a podcast from the Theodore Roosevelt Presidential Library. I'm Ted Roosevelt, and today my guest is Susanna Cahalan. Back in 2009, at the age of 24, Susanna developed symptoms her doctors could not explain: seizures, hallucinations, paranoia. She was confined to a hospital until one doctor identified the culprit. It was not a psychiatric disorder, but an extraordinarily rare autoimmune disease. Susanna chronicled this journey in her book, "Brain On Fire: My Month of Madness," and what began as a personal story became something much larger. In the years since, there have been a surge of unexplained conditions and misdiagnoses revealed to be autoimmune disorders. Her story helped illuminate this blind spot in medicine. Since then, she's continued exploring states of consciousness, identity, and reality. Her latest book is "The Acid Queen: the Psychedelic Life and Counter-Cultural Rebellion of Rosemary Woodruff Leary." This conversation goes to some really interesting places and I'm excited to share it with you now.

Susannah Cahalan:

I would say I was living an unconventional life in a way just because of what I was doing for work was unconventional, was extremely stressful. I was working for a New York tabloid called the New York Post at the time.

Ted Roosevelt:

[laughter] Still around.

Susannah Cahalan:

Still swinging, and each day was just entirely different from the next day. I didn't know who I'd be talking to. I didn't know what story I'd be reporting on. One second, I was going after kind of a murderer in the Bronx, the machete gang murderer. And then the next day I was in the Hamptons chasing Lindsay Lohan. It was very bizarre. And so that kind of stress and precariousness and nervousness and anxiety... All of a sudden, I'm manic at work, I'm crying under desks, I'm the happiest I've ever been—all this is happening and it's just ratcheting up as I'm not sleeping, as I'm not eating, I'm getting worse and worse and worse. At one point I start to see things that aren't there. So I am watching a painting come to life. I see a floating eyeball. I'm having these delusions that my father killed, my stepmother, and that there are undercover reporters taking notes about me. I mean, I'm in a state of real paranoia of real intense psychosis for several weeks.

Ted Roosevelt:

So, emotionally and mentally, as things become more extreme, you're still pushing through, like plugging away at your job at the Post. And you now have this difficulty tracking what people are saying to you in interviews and getting it to the written word. But it sounds like even that isn't enough to trigger you to start going to doctors.

Susannah Cahalan:

No, no. I would say that the physical symptoms did. I had some one-sided numbness initially that was disconcerting to everyone I spoke to. About that one-sidedness I think was very disturbing. And so I actually ended up at a neurologist who found nothing other than somewhat enlarged lymph nodes in my spine, which made him think that perhaps I had mono, which I did not, but that was my first misdiagnosis.

Ted Roosevelt:

Right. One of many.

Susannah Cahalan:

Yeah. Yeah. But the physical symptoms were the things that really got me out of the door and into a doctor's office. But what you're describing, which was this inability to track conversations, this general malaise and depression, which really was the overriding experience at the beginning and then ratcheting up into a kind of mania... That wasn't concerning enough to myself to see a doctor, but it was concerning to the people around me who were watching me.

Ted Roosevelt:

Well, and it does speak to how many people treat mental health versus physical health. Physical health is something that needs to be addressed more quickly. There's an obvious problem. Mental health often is put off as a, "I'm going to grind through this. I'm going to figure out a way to get past this." What were you telling yourself in that moment when clearly your brain is not working the way it has up to that point?

Susannah Cahalan:

I mean, everything I possibly could to create a story. So—was it my job? Which was to be honest, extremely stressful, and sometimes I didn't know if this was what I was meant to do. And it was destabilizing, I think, in some ways. So there was the job—was it my relationship? Was it living in New York after graduating from college? The lifestyle factors, the environment around me? That's where I initially went, and that's really where the doctors did as well.

Ted Roosevelt:

And then what is the inflection point in this experience where you go from, "I have numbness in my hand and the left side of my body" to "somebody needs to check you into a hospital."

Susannah Cahalan:

The major turning point, and the thing that probably saved my life, was having a seizure. And at that point, it's almost like the physical and the psychological kind of collide. My now husband, who was my boyfriend at the time, witnessed my seizure, which was a grand mal seizure. I lost consciousness. I was shaking, I was doing abnormal movements. It was a disturbing presentation and enough for my husband, Steven, to call an ambulance when he saw that. That really is the inflection point. That's kind of the hinge moment where my personality really does change. Most of what I remember for the next few months are really very hazy. A lot of hallucinations and delusions, but also now because I have done so much work on that time, I've really seen through the eyes of the people around me. So some of them are false memories, some of them are seen through the eyes of other people, and some of them are just my hallucinations and delusions.

Ted Roosevelt:

And very early on, your parents decide not to check you into a mental institution, and you've cited that as saving your life. I'm curious where that came from from your parents, why they made that decision?

Susannah Cahalan:

I hadn't exhibited any sort of serious mental health issues prior. Now, plenty of people have sudden breaks at that time in their life. So part of it was my stepfather lived with a brother who had been diagnosed with schizophrenia, and he knew what that was like, and that just wasn't the case in my case. And so my stepfather was very vocal about that as well.

Ted Roosevelt:

From what I've seen—you're probably not in charge of your healthcare at this point?

Susannah Cahalan:

No.

Ted Roosevelt:

Okay.

Susannah Cahalan:

I was in no way advocating for myself, and I was saying things like my grandmother was bipolar, saying things like that, that were not in my best interests at the time and were not really true. So I was not a great advocate for myself at that point. The rule out diagnoses when I was first admitted and at my most acutely psychotic, went from bipolar one to schizoaffective disorder, which is basically a combination of features of schizophrenia with features of bipolar disorder.

Ted Roosevelt:

So enter Dr. Najar—how does he come into the picture and explain the role that he plays in your diagnosis?

Susannah Cahalan:

Yeah. Dr. Najar, he had and still has a reputation of being very much an out-of-the-box thinker, a little bit of a maverick, and he often received the cases that could not be explained, were mysterious—and luckily mine was among those. And he had recently actually seen a child who had recurring seizures, about a hundred or so a day, and they did resection surgery on his brain, at the part of the brain where they believed that the seizure focus was. And he actually ended up examining his brain, because he's a neuropathologist as well as a neurologist. And he looked at the brain and found evidence of inflammation, evidence that it probably was an autoimmune response in the brain, and that made him aware of this whole new area of autoimmune encephalitis, which had only really been emerging in the literature since 2005. This was 2009 when I was diagnosed ultimately. And so since he had that history, when he saw me, that was in the back of his head as a possible diagnosis.

Ted Roosevelt:

And it seemed like there was a eureka moment when he has you draw the clock.

Susannah Cahalan:

Yes, yes, the clock. So first, Dr. Najar is warm, present. He held my hand, looked at me in the eye. He engaged very deeply with me, and that was part of the magic, I think, of what was happening. But ultimately, the kind of breakthrough moment for him happened when he just handed me a piece of paper and asked me to draw a clock, which is a very simple and cheap test typically given to Alzheimer's and stroke patients, to understand kind of the functioning of the brain. And to his utter shock and kind of delight, I drew the clock entirely lopsided—the numbers one through 12, all on the right side of the clock. This made him believe that there was some severe impairment on the right side of my brain, which is responsible for the left field of vision. And at that point, he ordered a brain biopsy.

Ted Roosevelt:

This is what leads to your diagnoses and then your very fast recovery. It may not have felt very fast. I've heard you say it was basically a year of medicine, and you're right as rain. I mean, you're back to your normal self.

Susannah Cahalan:

Yeah, yeah. It's pretty amazing considering how impaired I was. I have cognitive testing from that time when after I was diagnosed with autoimmune encephalitis. I was not able to read or write, I had a hard time walking on my own. That's where I was. And I remember going back to the hospital after a year or two later, and the nurses were utterly shocked.They had never really seen someone impaired to that great of a degree return and functioning at the level that I was. What's happening now, which is really interesting, there was recently a piece in the New Yorker, and just this week the British Medical Journal came out with a piece about related types that I had, of autoimmune encephalitis, where people are misdiagnosed for not two months, like I was—for years, if not decades. And that creates some real questions about: what is a life lived after this kind of experience? Like, when you were another person and then you come out of that—I'm very interested in that. So—profound implications about our diagnostic system.

Ted Roosevelt:

And just to orient listeners, how many people have been diagnosed with this to date?

Susannah Cahalan:

There aren't the hard numbers. When I was diagnosed back in 2009, I was the 217th person in the world. It's still mind-boggling.

Ted Roosevelt:

So basically no one.

Susannah Cahalan:

No one, yeah. It's amazing. Now tens of thousands of people have been diagnosed. Yeah, I mean, it's not as rare as previously thought. It's very exciting. People who are studying this right now, I mean, it's an exciting area of interest for sure.

Ted Roosevelt:

What does that journey look like for you where you start to get your feet underneath you and then you think, how can I make this into a positive, not just for myself, but for others?

Susannah Cahalan:

Oh, yeah. So I would say seven months after my diagnosis, maybe a little longer, I attended what's called a grand rounds where doctors present about your case, and I presented that about myself.

And two friends of mine from the New York Post joined me. After it was done, they said to me, you should write about this. So I talked to my editor and I remember it was a Tuesday and I worked for the Sunday paper, so everything was typically due on Friday unless it was breaking news. And I pitched it to him and he gave me the green light, and I had just a few days to cobble together this lost time. I think the headline was My Lost Month of Madness. I think that was the New York Post headline, which is great and accurate. And I was totally overwhelmed by the response to this article. Hundreds and hundreds of emails poured in from all over the country. And that just opened up a window that I didn't even see that this could be a book and that there needed to be more because there was so much I hadn't even touched on. And actually a lot I got wrong in that initial article, and I just knew—I just knew without a doubt I needed to write this book.

Ted Roosevelt:

The book is called Brain On Fire. You've said this, but you were very lucky to have things play out the way that they did. And so many people don't have that support network, don't have those resources, and they can end up on a very, very different path. And I think your story, the way in which you tell it, kind of illuminates that divide very well, that this is not an assured outcome in our current healthcare system as it's designed.

Susannah Cahalan:

Absolutely. And I think part of the goal of the book was to at least even the playing field a bit so that you can come, which happened where people would come armed with my book to doctors who didn't believe, who were dismissing, who were marginalizing and ignoring people. A lot of people got diagnosed because of that book, and nurses emailed me and doctors in emergency room settings—Oliver Saks actually reached out to me, which was incredible. The high level of need out there was breathtaking in a very disturbing way. I had teenagers emailing me who had obsessive thoughts and read my book and got diagnosed with OCD. I mean, I had talked to people who had a divorce in midlife and related to this lost sense of self that I experienced in recreating myself and coming out of this illness. And I still kind of can't wrap my mind around it.

And it was interesting—when I was trying to sell the book, the response that I overwhelmingly got was: this is too rare, no one will relate to it. And the exact opposite has been true, and I just continually count my blessings. I'm just absolutely floored still by how it's connected with people. But another kind of function of this, actually—my second book became a reaction to this realization that you're talking about, which is the kind of limits of our understanding of mental health diagnosis and how many people who are dealing with severe mental illness are continually ignored and in some cases abused and neglected.

Ted Roosevelt:

So that leads perfectly to your second book, "The Great Pretender," which is about a seminal study in psychology, it's taught in Psychology 101, and you discover while there are truths to it, it's kind of sloppy work. Can you walk us through first how you found that story and the experience of realizing that this sort of gold standard of our understanding of mental health in this country was in fact quite flawed?

Susannah Cahalan:

I became aware of the study, I would say, within the immediate aftermath of Brain on Fire really taking off, which was a year after it was published. I was really over my head with the amount of people reaching out to me and I didn't know what to do, and I felt lost because it wasn't just people reaching out to me who would then go on to get diagnoses. Those were the great stories and the wonderful stories. But there are many more people who wanted my illness and didn't have it. And maybe they had some kind of severe mental illness or their loved ones did, and I didn't know what to do with that, with those stories or how to counsel that. And so I was very lost and I had a wonderful evening with a woman named Dr. Deborah Levy and Dr. Joseph Coyle who were both at Harvard McLean Medical Center. And Deborah, who was unfortunately since passed, but she told me, this reminds me of this study, "On Being Sane in Insane Places." And it was by a man named David Rosenhan and in it a group of volunteers, and he himself, went undercover in psychiatric hospitals. And the only thing they did, he wrote, was to say that they heard voices, a voice that said "thud," "empty," or "hollow." And just based on that, they were all misdiagnosed mostly with schizophrenia. And this paper was a huge black eye for psychiatry.

This was published in 1973—it's still cited today as an example of how psychiatry is really a flawed branch of medicine. It didn't know how to tell—these are his words—"sanity from insanity." I read the study and I loved it. I mean, I thought it was spot on and not just because of the kind of artful design of it and the way it was written, which is like reads like a novel... [laughs] for reasons I would find out later... but also because of statements like—when you break a leg, it's something physical. When there is a broken brain, it's something that is attached to the individual. And I felt that in my brief misdiagnosis. Even what I was wearing—I was wearing black leggings and a white shirt—and when I had the bipolar one diagnosis, the doctors saw that as revealing—a revealing outfit, that showed an example of hypersexuality, because that confirmed to their diagnosis of bipolar one, which sometimes has that as a presentation. So the way the doctors see you totally conforms to the label applied. And when mine was a neurological illness, the treatment was far improved. I became this example of this excitement was really around me and people were really pulling for me and it felt like a rah rah moment for me as opposed to when I had the rule-out diagnosis of severe mental illness. So all of that really did appeal to me.

Ted Roosevelt:

So going back to David Rosenhan's study, you sort of alluded to the fact that some of this was written very novelistically and that it was maybe reflective of the quality of the actual scientific work that was getting done. You discover a gentleman named Harry Lando.

Susannah Cahalan:

Yes, Harry was this ninth pseudo-patient, a footnote. He wasn't included in the eight pseudo-patients that were written up in the study, but he was a footnote as a ninth pseudo-patient. But Harry was hospitalized for 20 something days in a public health hospital in California, and he too was diagnosed with schizophrenia. But that's where the similarities end between Harry Lando's experience and what the study portrayed, psychiatric hospitalization. He was a very unhappy graduate student going into it, in an unhappy marriage, and he went into this and he said—he described it as an open, warm, and loving atmosphere. They would sit around and sing Peter, Paul and Mary. They took trips to the shore and he describes realizing that he was in a deep depression and the hospitalization nearly a month of his life actually helped him profoundly. And he really credits that as a turning point in his career. It was a hinge moment for him in a very positive way. And he believes that his thesis, that psychiatric hospitalization actually can be healing and beneficial if done correctly was discarded because it didn't match David Rosenhan's thesis that there was basically no such thing as a benign or healing hospital in relationship to psychiatry.

Ted Roosevelt:

Well, what's interesting is that I don't know about the other eight that were in the book, but the ninth Harry, who did actually have depression and would actually benefit from the services of an institution is the one that had the good experience.

Susannah Cahalan:

That is a good point.

Ted Roosevelt:

And the eight that didn't have a good experience were the ones that didn't actually have a problem.

Susannah Cahalan:

Absolutely great point. Yeah, he was someone who actually could benefit from it, whereas David Rosenhan went in to Haverford State Hospital. Bill Underwood, who was also in the same graduate class as Harry Lando, he went in as a pseudo-patient. Harry went in, but as the ninth, but I believe that the other six did not exist and that they were manufactured—

Ted Roosevelt:

That's fascinating.

Susannah Cahalan:

—to augment the study because there is evidence that I found that initially David just wanted to make it about his hospitalization, but a science editor who saw him talk about this at an academic conference pushed him to expand it. And I think either through the inability to find people to do it or just through laziness, which people who worked with him did actually accuse him of, so he ended up manufacturing the data.

Ted Roosevelt:

It's amazing in medicine and in society how often the story that plays to an existing narrative gets picked up much more easily, much more quickly and absorbed as, accepted as truth on face value.

Susannah Cahalan:

Oh, beautifully put. Absolutely. And I think in medicine we see it because it has actual implications, life or death implications, but just as you said it culturally, that happens as well. And there is confirmation bias. We see what we want to see. And then there's this concept of cognitive dissonance where things that run up against our beliefs, especially when those beliefs are about the self, about who I am, it makes us very uncomfortable. And in the face of that, we either change our behaviors or we double down in these beliefs, and you see it all the time.

Ted Roosevelt:

So this brings us to your third book. What I find interesting about your three books is that they all—you can see your progression from each book to the next. So your third book, "The Acid Queen," which just came out this April, is about Rosemary Woodruff Leary, but you start where I think most people start, I think with her husband, Timothy Leary. How did you come to Timothy Leary? What attracted you to him, and then how did you find Rosemary?

Susannah Cahalan:

Oh, great. I'm glad you see the through line. I mean, it's subtle, but it's there. And it was a bit of a pivot because it's a biography. Thank you for engaging so deeply with my work. I appreciate it deeply. So with Timothy Leary and how I became interested in him—initially it was... I'm interested in altered states. I'm interested in science and medicine. At this point right now in the culture, you can't help but see that psychedelics are just everywhere and in many ways being offered as a kind of new magic bullet. So that neurobiological side of me was interested in that, and the overlap between the psychedelic experience and the psychotic experience. The New York Public Library has this amazing scholar in residence. I got access to the Timothy Leary files, which are archives, which are there at the New York Public Library, 400 banker's boxes worth of material.

Timothy Leary initially was the one I was focusing on because it really, I mean, almost every article that talks about psychedelics will mention him. He is a little bit of a boogeyman that is kind of haunting this psychedelic renaissance happening right now because he was the face of psychedelics in the 1960s, the face of what happens when you kind of go too far. But he had a lot of insights too, and they're still relevant. And I started going through his boxes, and at the same time, I became aware of this other group of boxes called the Rosemary Woodruff Leary collection, which obviously piqued my interest. She wasn't really chronicled really in the literature at all. I got very excited.

Ted Roosevelt:

What was it about her that got you excited? She's obviously been overlooked by history, but was it just simply that like, who's this person, it's a curiosity and then you discover that in fact she's quite a substantive and important influence, or is there something that in those boxes that you get to and you go, oh, wait a minute, I can't just go brush over these 25 boxes.

Susannah Cahalan:

It's a little bit of both. There's part of me that loves a story that's never been told, opening up archives that have never been seen before. I mean, that to me just immediately gets me going. But the woman who I was encountering in these boxes—through her unpublished book, through letters—she was a fascinating character. A woman who not only undergirded a lot of Timothy Leary's persona—his speeches, his writing—but she also kind of represents a different view of psychedelics, which I thought was really interesting, a kind of more careful, caregiving side of the movement as opposed to the kind of hyper-masculine. Hers was kind of more community-oriented, more careful about the risks and benefits of it, I mean—more circumspect, which I think was really important. If you look for serious academic work on hippie women, you can't find it. And if you look at biographies of women who kind of fit into that milieu, you see the big names. You see Janice Joplin, you see Stevie Nicks, you know... and when you take in someone who maybe traditionally wouldn't have a biography written about her, though she has such a cinematic and worthwhile life—she wasn't a singer, she wasn't an actress, she wasn't a famous writer. When you apply the kind of biographers lens to that person, you take in totally new information about the era, and that was really also very exciting for me.

Ted Roosevelt:

I'm struck also by the fact that you, I think rightly described Tim Leary as a bit of a boogeyman today in terms of the psychedelic movement, but the contrast between Rosemary and Timothy... that she had a much more nuanced approach to psychedelics and one that had that been the approach that they had taken might've been much more beneficial for us today.

Susannah Cahalan:

Yes, I do believe that if Rosemary's more circumspect take...her major message was to be careful and to know that you become vulnerable. It matters who you're doing it with. It matters who gives it to you. It matters the so-called "set and setting" of what you're heading into, which was—Timothy Leary did come up with that concept, and it's an amazing, important concept to this day. But Rosemary embodied it. Rosemary actually lived it. Had we had a more Rosemary view of psychedelics in that time, perhaps all those years in between which when psychedelic use and research went underground, that's lost time. In terms of using that to benefit people who are sick, understanding ourselves, understanding mystical experiences, whatever avenue you want to go down, it's lost time. And it was time lost partially due to some of Timothy Leary's over-enthusiastic and over-wide reach. I remember when the book came out, I got a review that just didn't understand, basically said that she wasn't worthy of a biography. I felt really down about that. Theodore Roosevelt actually came up, the whole "man in the arena" quote, and it was just a reminder that I'm daring greatly and I'm in the arena. And that kind of like—the process of doing is what matters, not the outcome.

Ted Roosevelt:

I love that. I'm reminded of Edmund Morris, who is probably the preeminent biographer of Theodore Roosevelt, and when asked about Theodore Roosevelt, he said the best description he ever heard of him was actually given to him by a second grader, and that it was "Theodore Roosevelt was a doer of deeds."

Susannah Cahalan:

Oh, wow. Yeah. I want to be a doer of deeds.

Ted Roosevelt:

Susanna, you are a doer of deeds for sure, and I think you've proven that in the arena many times over. So let me ask you this final question. What does it mean to be a good citizen?

Susannah Cahalan:

Oh, I love that you end every podcast with that question. I think for me personally—you can talk about civic engagement, all that—for me, it's being engaged with your community.

To be of service to others, to be aware of what's going on, to be involved with the day-to-day life of the people around you in pursuit of a greater good. I think you can be a good citizen and not vote. That's a debatable line, but I think for me personally, I think someone who's involved with people who need your help, part of the kind of social contract, I think that that's, for me, it's really important and it's something that's become more important actually as I become a parent, because you become more bound in your community. Community for me is the kind of hallmark of a good citizen, of being part of a community.

Ted Roosevelt:

All right. I've taken way more of your time than was scheduled. I apologize. It's only because I've enjoyed this conversation so much. So thank you for that.

Susannah Cahalan:

I really enjoyed—You're such a wonderful interviewer, and thank you for really doing the whole breadth of my career. I really appreciate it. That was really wonderful.

Ted Roosevelt:

Susanna. This was such a pleasure. It's always such an intimate conversation when somebody's talking about their own health experiences, particularly when they're mental health experiences. I really appreciate you opening up in the way that you did today. I also really appreciate how thoughtfully you've explored and uncovered medical mysteries and probed the nature of self. Listeners, we've just scratched the surface. So please check out Brain On Fire, The Great Pretender and her latest book, The Acid Queen, the Psychedelic Life and Counterculture Rebellion of Rosemary Woodruff Leary. Good Citizen is produced by the Theodore Roosevelt Presidential Library, in collaboration with the Future of Story]Telling and Charts & Leisure. You can learn more about TR's upcoming presidential library at trlibrary.com.