How Susannah Cahalan's Battle Against Autoimmune Encephalitis Changed Medical History

[00:00:00] Bettina M Brown: Hello and welcome to In The Rising Podcast. My name is Bettina Brown, and this is the platform I've chosen to talk about living a life that's in alignment with your hopes, your dreams, and your goals. And sometimes living the life that's in alignment with your goals is fighting for the life of those that you love, and that is the story of the person I spoke to today.

Her name is Susanna Cahalan and is the author of Brain On Fire and is the person herself who had a medical condition that was extremely rare. But her parents would not give up on her and her boyfriend now. Husband did not either. So I welcome you to my podcast today to hear the conversation between Suzanne and I as we talk about life and joy and rebirth.

10 years after her first publication of Brain On. Well, I am really, I am so honored to speak with a person that has gone from there and back again, and it's Susanna Cahalan, author of Brain On Fire, my Month of Madness, but more importantly, a survivor of a condition that was very, that is very rare, was even more rarely known and lived to tell the story and to raise awareness.

So thank you for being on in The Rising Podcast.

[00:01:30] Susannah Cahalan: It's a pleasure. Thank you for having. 

[00:01:32] Bettina M Brown: So I read your book. I watched the Netflix story, and I am in healthcare. I'm a physical therapist, I was just trying to wrap my head around everything and one question came to mind with, with all of the things that you went through, do you feel like you're talking about someone else when you're writing this story?

It seems like there was this disconnection, but you're building a connect. 

[00:01:57] Susannah Cahalan: Absolutely. You've picked up right directly into how I was feeling. I mean, it, it really is dissociative to, to have this experience. Not only because I don't remember so much of what happened, but because it was so dramatic, like Loom and then there was a movie made about it.

And so there's all these layers of distance that have happened, just narratively, right? Just writing a book about it, just like you, you kind of disconnect anyway. And then having these, you know, talking about it every time I conjured up it kind of gets further away in a way, you know, and, and, and trying to, piece together a time where I was barely present for it was really challenging in.

The first, when I wrote this, or originally my second part of my book, which is in the hospital, I wrote in third person. You picked up right. You know, like right on that. Cause I wrote it cuz I didn't feel honestly that I could say I cuz my eye was barely present. It didn't work. It was too odd to say to do that.

And emotionally it didn't land as well much with readers. That was an editorial, wonderful editorial suggestion by my editor. But that's how I do feel. I feel very much like it's her not. 

[00:03:02] Bettina M Brown: Yeah, and you had an anti N M D A receptor encephalitis, and what that means in English is what they said the title of your book, your brain is on Fire.

Your, your muscles were not responding, your memory was not there. You had numbness, you had seizures. And what I really loved about this story as well is how much your family did not give up on. How do you feel, just thinking about your family, your new boyfriend, and how they just stood by you? Like they knew something in their gut that a lot of providers, you know, with all they knew, could not connect with.

[00:03:37] Susannah Cahalan: It shows you, so, and I'm sure you've experienced this in your experiences as a physical therapist, you know, you have, you do have to value those intimate relationships. There's so much insight there that sometimes is dismissed in medical situations where it's like, oh, you know, stop talking about, we we're, we're the medical experts here.

There was an intuitive expertise too, and you know, they really, knew that whatever, all along the way, all these misdiagnoses didn't make sense. And they were adamant about that in different ways. You know, some of it was, a more kind of maternal way through my father who was supporting me just by being there and being warm and loving.

And one of them was a more proactive questioning, asking for, you know, second opinions, asking for definitions, et cetera. Which was my mother. And, it was through those and, and of course my, the support of, of my boyfriend who is now my husband. But, you know, that support system that, that support structure, is the reason I'm here just as much of that is that diagnosis.

It was the support I had for sure, 

[00:04:38] Bettina M Brown: And it, it really opened my eyes to, as someone in healthcare, Just like you said, that intuitive expertise to, to value that more than just, well all the tests say. And I think with coming through that, what a message to come through with that is, yes, your providers, all of us have gone through a lot of learning and knowledge, but at the end of the day, you know you better than you, than anyone else, and your family knows you better than those providers to emphasize.

[00:05:08] Susannah Cahalan: Absolutely. And I think E, even just as a clinician, as a provider, there's your intuitive wisdom too that you can tap into. Like there's something powerful about using your own senses. That's not just relying on medical tests or jargon, but actually there's a feel, there's a clinical feel as well as oppos, you know?

And I think that that's an important, an important thing. Yes. Yes 

[00:05:31] Bettina M Brown: it is. And so your story with the book, and even with the movie Delves all into how it went from, you were fine to not fine to going through. Yes. But there wasn't a lot of information, because that's already a huge story, you know, what happened the week after you left the hospital?

What, what happened? Like, was it just clear, like the light bulb turned on? Or what was that process to reintegrate into your sense? 

[00:05:55] Susannah Cahalan: You know, it's so hard for me to say because I wasn't fully present. I remember when I, like there's an eye that reemerges when I kind of feel myself in my body again, and it's when I could write again.

And I started keeping a journal. But that journal, if you read it, it's, it's really simple. It's the weather was this, it is, I did this, you know, but this act of writing and cr you know, putting words on a paper actually does, I coincides with my feeling of. Being present again. So it actually, it does have a lot of meaning beyond just the words on the page for me.

But, you know, it's interesting cuz it's, you know, people say, oh, she relearned how to do, I don't think it's a relearning, it wasn't as if I didn't, I had to learn how to ride a bike again, or learn how to tie my shoes again. I think it was more like, what they describe is that these receptors in the brain are sucked into the cell.

Right? And in some cases, these th those same. Those same receptors sprout back up. So it's almost like in emer, it's almost like you're lifting your head out of the water. You're not learning how to swim again. You're like lifting yourself up. Mm-hmm. Again, it's, it's a little bit different. I think in the process you're relearning things, but really it's kind of a, it's kind of a reemergence in a way. 

[00:07:07] Bettina M Brown: That's a very good word, a reemergence of yourself.

And you are a writer. You were a writer before and you're a writer now. How do you feel that your talent of journalism and writing helped you process your experience? 

[00:07:24] Susannah Cahalan: You know, it's, I've always relied on writing to understand myself. I've kept journals. I think I have journals going back to fourth grade, I've a lot of familial dysfunction, but, but, but you know, I've always kind of made sense of my own.

Worlds and my own views or emotions by writing. And I think in the act of creating this, I didn't know I was doing this. It wasn't why I did it. Why did, it was to spread awareness. I felt very like, I had this mission, so it like, gave me this force and this, like, I felt like this is something that's worthy to do, you know?

But I didn't realize what I was also doing was I was imposing a narrative upon this chaotic, traumatic time. And by building it into a narrative, it suddenly had meaning, it had a beginning, middle, and end. It had this purpose, it had, and it kind of allowed me to wrap my arms around this time.

And, And, and, and, and really kind of bring it into my life, into the infrastructure of my life and my being and my identity as opposed something that just happened to me. Sometimes I can impose something, some kind of order on it, and it was really, really important. 

[00:08:28] Bettina M Brown: And thanks for sharing that. And, and what you said is giving it meaning, because this is also very like a vulnerable experience that you had, that you're sharing.

That was not the brightest time, but you said this purpose that you have and now it's, you know, the 10 year anniversary. How do you feel your purpose has changed or grown in those 10 years?

[00:08:48] Susannah Cahalan: Oh yeah. You know, that's such a great question. I think, and when, when this first came. I, it was my purpose to get every single person diagnosed by myself.

Like make sure that every single person I was giving my cell phone out to everyone. And I was invo, I was visiting people in the hospital and I was doing grand rounds, you know, doing, talks to, doctors, and medical students, which I still do from time to time, but, It was really, I felt like I myself need to, you know, muscle my way in.

And, and I realized very quickly that that's not actually my, first of all, I, I don't have the expertise for that. That's not, I'm, that's not my training. So I've, I've kind of drawn away from that a bit. And I let the book kind of have its own life in a way. Mm-hmm. Like if people have taken it and it's become something else actually outside of me, like, it's almost as if my purpose.

Has the book is my purpose. And now of course I wanna help people and you know, and I now I feel like I'm more of a conduit to people who are more appropriate to help. You know, like I was actually outside of my zone of comfort or, or expertise. And so now I'm more of a conduit that there's a nonprofit that I work with.

Two of them, one of them is called the Autoimmune Encephalitis Alliance. They do incredible work, and the other ones UK based, but they also do stuff in the, in the United States called Encephalitis Society and, and they have the infrastructure, they have the expertise, and they really can help. So I've kind of moved away from like having the muscle in and, you know, I don't know, and push myself to, you know, Push through this at the thought, I can't do that myself.

And to, to kind of be a bridge more to allow my story to offer that bridge or specifically to help introduce someone or people to these places that can truly be, provide that infrastructure and support during those times. 

[00:10:32] Bettina M Brown: Being aware of how your story is part of the infrastructure, but it does not have to be the infrastructure in your life.

Right? And building upon that and growing with that. And thanks for sharing that. You have really, you married your boyfriend, you have your kids. How do you feel your, you have risen up to really what your life's meaning is. Is it mostly through this story or is it like, that's a part of it, but it's not all of it?

[00:10:58] Susannah Cahalan: Oh, great question. I think I will always say that in some ways if I, when I wanna think this way, I think like, oh, my life's purpose was to do that book. And I like did that. I can put that aside and then I'm reali, you know, I, in terms of. But then I think my life's purpose is to, to assure these little souls that I have, they're four years old, and make sure they're like decent people, independent people, you know, and they're different things, but that's really, you know, I didn't know that that kind of purpose existed prior.

But yeah, in some ways it's, it's very different, very different kind of, they can both exist, but, no, it's a, it's a really interesting question. I think once having these children, kind of shown me like what ki what purpose really can mean and how, how deep that is and how, like, just.

Overwhelming it can be and just fulfilling and I don't know, babbling, I don't know. 

[00:11:53] Bettina M Brown: But I get that point and, and yeah, that the purpose of having those little souls that, you know, that come from us, that were to give to the world that that has an a knowledge and, and purpose and intensity that may be different because of an experience like what you went.

[00:12:10] Susannah Cahalan: I think that's beautifully put and I, yeah, I think that's what I was kind of skirting around, not quite being able to verbalize, but yeah. No, I, I, I think, I think, I think you're right. I think, would be a different mom had I not had that, this other child in a way that, that I, that, that has also given me a lot of meaning in my life and has had reverberations of meaning beyond me.

I think I, I think I definitely would be a different.

[00:12:34] Bettina M Brown: What would be like in hindsight now, what you would say to that doctor that just sat with it and like, I'm gonna think about this a different way. Like what, what words would you say at this time?

[00:12:47] Susannah Cahalan: To the doc, my doctor who treated me specifically.

Yeah. Well, he is part of my very dear part of my life. Came to my wedding. He's my, I mean, I don't even know if there are words. You know, I've, it's funny, it's, I, I think about him and what he's done for me personally in my life and how he does this for so many people. Like I'm just one of hundreds of people that he's done this with in his life and how he chose.

Be this healer, you know, this amazing force that not only is he brilliant and you know, up to date with all the cutting edge neuroscience, but he's actually a very healing, beautiful person on top of that. I don't know. I just, I, I don't know what to say except for Thank you. I could, I could never repay the gift he gave me, but, but he's a, he's an incredible human and I'm just, I got very lucky to meet.

[00:13:38] Bettina M Brown: And I think it exposes also the dichotomy that yes, some physicians can be like, this is what it is and others are still in that, what you called intuitive wisdom and to not, this is a message to anyone in healthcare to not let go of that intuitive wisdom that we inherently are born with. For the sake of just evidence-based research.

 It there is more to that. So thank you for that reminder. And, and, and, and the way it's coming across to me as a person healthcare is, it's a very gentle reminder. It's not a slap in the face. So really amazing story that you have and thank you so much for your time. 

[00:14:14] Susannah Cahalan: Oh, thank you for this. This was so beautiful.

I really, I really appreciate this. 

[00:14:20] Bettina M Brown: If I ever had a moment when I felt I was in a surreal place. Have you ever felt like what is happening is a little bit surreal? And that's how I felt today with my conversation with Susanna. And it was just the fact that I had read her story. I was emotionally invested.

I could feel the anguish of her family and the confusion, and then watching the, the movie as well. I just. I felt so much and in tune and, and felt the joy of the physician when he finally figured out what was going on and gave her a chance to come out of the flames and really build a great life and, and have the life that we want.

It was a surreal experience of how without one person, Whether it was her family or her boyfriend, now husband, or that physician not listening to something in their gut that told 'em to go ahead and follow through. How much of a story would be different today? So I'm grateful for your time today because that's the one resource we don't get back.

And if you believe that this kind of story would really help someone that you know, I urge you and I invite you to share it because we never know what impact you may make on someone. I also invite you to leave a five star review if you feel in The Rising podcast is in alignment with what you believe in.

Because again, changing lives one at a time and making that impact is such a real thing. And until the next time, let's keep building one another up.