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Wed November 14, 2012
A Young Reporter Chronicles Her 'Brain On Fire'
Originally published on Wed November 14, 2012 5:47 pm
In 2009, Susannah Cahalan was a healthy 24-year-old reporter for the New York Post, when she began to experience numbness, paranoia, sensitivity to light and erratic behavior. Grasping for an answer, Cahalan asked herself as it was happening, "Am I just bad at my job — is that why? Is the pressure of it getting to me? Is it a new relationship?"
But Cahalan only got worse — she began to experience seizures, hallucinations, increasingly psychotic behavior and even catatonia. Her symptoms frightened family members and baffled a series of doctors.
After a monthlong hospital stay and $1 million worth of blood tests and brain scans that proved inconclusive, Cahalan was seen by Dr. Souhel Najjar, who asked her to draw a clock on a piece of paper. "I drew a circle, and I drew the numbers 1 to 12 all on the right-hand side of the clock, so the left-hand side was blank, completely blank," she tells Fresh Air's Dave Davies, "which showed him that I was experiencing left-side spatial neglect and, likely, the right side of my brain responsible for the left field of vision was inflamed."
As Najjar put it to her parents, "her brain was on fire." This discovery led to her eventual diagnosis and treatment for anti-NMDA receptor encephalitis, a rare autoimmune disease that can attack the brain. Cahalan says that doctors think the illness may account for cases of "demonic possession" throughout history.
Cahalan's new memoir is called Brain on Fire: My Month of Madness.
On the moment when Cahalan lost her sanity
"I don't remember anything from this experience. This was all told to me after the fact. [My boyfriend] Stephen heard guttural sounds coming from me. He thought maybe I was just angry because I hadn't slept for days, and he knew that it was really frustrating. And so he thought, 'Maybe she's just venting her frustration.' But the grunts were very unnatural sounding, so he turned and looked at me. And he saw that my eyes were wide open but completely unseeing, and at that point he tried to shake me and say, 'Are you OK, Sue? What's going on?' And at that point, my arms whipped out, and I had a grand mal seizure, and I was convulsing. And I bit my tongue so that blood and kind of a combination of blood and foam was coming out of my mouth. And he had the presence of mind — and I think this is incredible — to know that this was a seizure because I had never had a seizure before. And so he turned me on my side and he called 911. And [that's, for me] ... the difference between sanity and insanity ... that moment where kind of my memory goes dark."
On some of the symptoms she exhibited at the hospital
"I slurred my words. I drooled. I didn't have proper control over my swallowing ... I kept my arms out in unnatural poses. At one point, I was like the Bride of Frankenstein — I kept my arms out rigidly. I was slow. I could hardly walk, and when I did, I needed to be supported ... I started [acting] very psychotic. I believed that I could age people with my mind. If I looked at them, wrinkles would form, and if I looked away, they would suddenly, magically get younger. And I believed that my father had murdered my stepmother. I believed all these incredibly paranoid — a huge, extreme example of persecution complex. And then as the days went on, I stopped being as psychotic, and I started entering into a catatonic stage, which was characterized by just complete lack of emotion, inability to relate, or to read, or hardly to be able to speak."
On being supported by her parents and boyfriend
"Without them, I wouldn't be here right now, especially with my mom. She was a bulldog. I mean she would not take 'no' for an answer, especially in the beginning when they were saying it was alcohol withdrawal and partying. She refused to see that as an answer, and so she did her own research. She asked questions. At home, after a day at the hospital, she'd make a list of all the different terminology they used, and she'd look it up and, you know, not everyone is capable of doing that. ... I was so lucky to have someone there for me that could do that. ... If everyone could have someone like that, it would just be a better world."
On the possible connection between her rare immune disease and cases of "demonic possession" throughout history
"When you think about the symptoms — in my case alone, this grandiosity, this violence. In a lot of children, you see hypersexuality. Even my grunts and these guttural sounds that came from me sounded superhuman to someone who might be inclined to think that way. ... When you see videos of people — in fact, when I see videos of myself — demonic possession is not far from your mind. It wasn't far from Stephen's mind when he first saw that seizure. And I've talked to many people who've had this disease, and one woman I spoke to actually asked for a priest because she said, 'The devil is inside of me. I need it out.' A little girl was grunting — they had a monitor in her room — and she was grunting so unnaturally that her parents looked at each other and said, 'Is she, is she possessed?' They actually said that about a little girl. You can see throughout history why people would believe this."
DAVE DAVIES, HOST:
This is FRESH AIR. I'm Dave Davies, in for Terry Gross, who's in New York to present the National Book Foundation's Literarian Award. How do you explain it when a healthy young person seemingly becomes someone else, speaking incomprehensible phrases in frightening, guttural tones, displaying signs of paranoia and hallucination and at times becoming catatonic?
For centuries, some ascribed the behavior to demonic possession, but scientists now believe at least some of those cases were due to a recently discovered autoimmune disorder that attacks the brain.
In 2009, our guest Susannah Cahalan, was a healthy, 24-year-old reporter for the New York Post when she began to experience a terrifying series of symptoms you'll soon hear about. They frightened her co-workers and family and baffled a series of doctors before the illness was finally diagnosed and treated.
Cahalan doesn't remember weeks of the ordeal but has used her journalistic skills to reconstruct what happened - interviewing physicians, nurses, friends and family members and consulting medical records, hospital videos and a detailed journal her father kept. Her book about her experience is called "Brain On Fire: My Month of Madness."
Well, Susannah Cahalan, welcome to FRESH AIR. I want to begin with a reading from the book that's in the middle of this torment that you went through with this illness. And this is a moment where you've had this for a bit, you're trying to figure it out, and you're in quite a mental state. And you're going with, I believe, your mom, your step-dad whose name is Alan(ph) and your boyfriend Steven(ph) for another test, right, an EEG.
SUSANNAH CAHALAN: Yes.
DAVIES: And you've been reluctant to even get in the car to go, but you finally get in, and then let's pick it up there from there if you will just give us this reading.
CAHALAN: (Reading) As we drove out of our driveway and onto the street, Alan began to speak. I could hear him distinctly, though he wasn't moving his lips. You're a slut. I think Steven should know. My whole body shook with anger, and I leaned threateningly towards the driver's seat. What did you say? Nothing, Alan said, sounding both surprised and exhausted.
(Reading) That was the last straw. Swiftly, I unbuckled my seatbelt, yanked open the car door and prepared to jump out of the car head-first. Steven grabbed the back of my shirt in mid-leap, saving me from launching myself out of the vehicle. Alan slammed on the brakes. Susannah, Steven said, in a level tone, a timbre I had never before heard from him, that is not OK.
(Reading) Obedient again, I closed the door and crossed my arms, but hearing the click of the child's lock sent me into panic mode again. I flung myself against the locked door and screamed: Let me out, let me out, over and over until I was too exhausted to yell anymore, then rested my head against Steven's shoulder and momentarily nodded off.
(Reading) When I opened my eyes again, we had exited the Holland Tunnel and were entering Chinatown with its sidewalk fish, swarms of tourists and fake designer-bag salesmen. The whole sordid scene disgusted me. I want coffee. Get me coffee now. I'm hungry. Feed me, I demanded insufferable. Can't you wait until we get uptown, my mom asked? No, now.
(Reading) It suddenly seemed like the most important thing in the world. Alan took a sharp turn, almost hitting a parked car, and took West Broadway to the Square Diner, one of the last authentic train diners in New York City. Alan couldn't figure out how to unlock the child's lock. So I climbed over Steven to get out of his door, hoping to disappear before any of them could catch up.
(Reading) Steven suspected as much and followed me. Since I couldn't get away, I sauntered into the diner in search of coffee and an egg sandwich. It was Sunday morning, so the line to eat was long, but I wouldn't wait. I barbarously nudged an elderly lady out of my way and, spotting an open booth, sat down. I shouted obnoxiously to no one in particular: I want coffee.
DAVIES: And that was Susannah Cahalan reading from her new book "Brain On Fire." There were parts of this illness that you literally don't remember, have no memory of. Do you actually recall this episode?
CAHALAN: I actually do, to some degree. I remember feeling very powerful and, I mean, obviously in a very negative way. This was a moment that this kind of horrible part of myself that I never really knew before had come out.
DAVIES: Let's take it back to the beginning. What was your first symptom of this problem?
CAHALAN: The first symptom was actually I thought I had bedbugs, which is not that surprising given the time and the place. It was 2009 it was in New York City. It was a time when pretty much everyone was worried about bedbugs. You know, they had been reportedly in, you know, movie theaters and park benches. So it wasn't really that scary for me.
And from there it progressed, and, you know, but it started very, very subtly.
DAVIES: Yeah, how did it progress? What else happened?
CAHALAN: So from there I started having a numbness in my left hand, which was disconcerting to me and my doctors. And then after that, I was very lethargic. I was tired. And at that point, I went to a doctor who believed that I had mono. But from there other things started happening. Behavioral problems started to emerge.
I became very jealous of my boyfriend's ex-girlfriend. I believed that he was cheating on me, and I was obsessed. You know, this is entirely outside my personality. But I actually snooped through his things, read his emails and, you know, just went through all of his old love notes in search of kind of evidence of his philandering. I mean, these kinds of behaviors were very foreign to me before this. So that was uneasy at that time.
DAVIES: And you were a reporter at the New York Post. I mean, were used to doing work competently, and that changed. I mean, you describe a moment when you had an opportunity to interview John Walsh, who's - is that right? He's the guy who - of the TV show "America's Most Wanted." Do you want to tell us about that episode?
CAHALAN: Yes, that was a time when I became even more erratic, and before that, I was moody. You know, so one moment I'd be laughing, and the next moment I'd cry hysterically. So that's the kind of context to where I interviewed John Walsh from "America's Most Wanted."
And I was interviewing him about submarines and drug-smuggling submarines. And I remember the interview vaguely. I know that I botched it. I was laughing inappropriately, behaving almost as if I was drunk during this interview to the point where his publicist stopped the interview short and basically said, we can't have this conversation anymore, because she knew something was wrong with me.
DAVIES: And then as you tried to walk him to the elevator, you were literally staggering, bumping into walls.
CAHALAN: Yes, I was. I would try to reach out to open the door for him and his publicist to walk through, and I couldn't. I missed it by nearly a foot.
DAVIES: You also describe a moment getting out of a subway I think at Times Square and the effect of the lights on you. What was that?
CAHALAN: Oh, that was an intense experience. I was walking from my apartment in Hell's Kitchen through Times Square to get to my office at the New York Post, and while walking through Times Square, the lights were so viciously bright. They were - they just - I felt nauseous because they just hurt my eyes so badly. And I didn't know it then, but it was actually a sign of photophobia, which is light sensitivity preceding a seizure.
DAVIES: So you've got migraines, you've got numbness, you at times behave really inappropriately. You're kind of paranoid and jealous of people, this sensitivity to lights. What did you think was going on?
CAHALAN: Well, at that time I was struggling for an answer, I mean, just grasping at anything that could make sense. I thought am I just bad at my job? Is the pressure of it getting to me? Is it a new relationship? Me and Steven, my boyfriend Steven, had just started dating six months before. I thought maybe it's combination of these pressures that's, you know, maybe I'm becoming unhinged, maybe I need to leave, you know, New York City. Maybe it's too much for me. Maybe living alone is too much.
So I tried to find an explanation, but nothing seemed to make sense. And then I was talking to a friend who suggested maybe you're suffering from a bipolar episode, and that just seemed to make so much sense to me. So I clung to that as an answer. It actually was very - I was filled with relief to have an answer.
DAVIES: Yeah, not many people would be happy to hear that they had bipolar disorder, but you were desperate to understand this.
DAVIES: There's finally a moment in your apartment with your boyfriend Steven where you're watching a movie, and I gather you don't really know what happened, but you've pieced this together afterwards. Do you want to tell us what occurred that night?
CAHALAN: Yeah. I don't remember anything from this experience. This was all told to me after the fact. Steven heard guttural sounds coming from me. He thought maybe I was just angry because I hadn't slept for days, and he knew that it was really frustrating. So he thought maybe she's just venting her frustration.
But the grunts were very unnatural sounding. So he turned and looked at me, and he saw that my eyes were wide open but completely unseeing, and at that point, he tried to shake me and say, you know, are you OK, Susannah, what's going on. And at that point my arms whipped out, and I had a grand mal seizure, and I was convulsing.
And I bit my tongue so that blood and - a kind of combination of blood and foam was coming out of my mouth. And he had the presence of mind, and I think this is incredible, to know that this was a seizure because I had never had a seizure before. And so he turned me on my side, and he called 911. And that moment for me is the difference between sanity and insanity and that moment where kind of my memory goes dark.
DAVIES: So from there for, what, several weeks afterwards, you really don't know what - you don't...
CAHALAN: No, I mean, I have to piece it together from the information that I have. I don't have any real memories from that time besides hallucinations.
DAVIES: Right. So what were your sources when you decided to piece this back together? Because, you know, you had a loving family that were really invested in your care.
CAHALAN: Luckily I did, and, you know, they were extremely valuable to being able to re-create this time. You know, I started with the objective evidence, which was the medical records. And I had thousands of pages of medical records to work with. And then from there I also had video of myself in the hospital. I mean, video of myself having a hallucination.
I have about an hour of video during that time that the hospital itself kept, because I was on an EEG floor. So they wanted to monitor me if I was having a seizure. So I actually have physical evidence of my hallucinations. There's one example where I'm actually actively hallucinating that I'm on the television. I'm saying I'm on the news. I'm screaming: I'm on the news, I'm on the news, pointing accusatorily towards the camera.
And so I have those videos. I had these medical records. And then I have my parents' recollection of events, and I have my boyfriend's recollection of events. I have friends' recollection. I interviewed doctors and nurses, I mean, everyone I could possibly get my hands on to try to fill in the gap what really happened to me.
DAVIES: And your father kept a journal.
CAHALAN: And he kept a journal as well, yes.
DAVIES: You went to a very well-regarded neurologist who thought there was a simple explanation. Do you want to tell us about that?
CAHALAN: Yes. In the beginning, when my symptoms were increasing paranoia and the seizures, I went to a neurologist who insisted that it was alcohol withdrawal and that I was partying too hard and working too hard and basically just, you know, cut it out, and you'll get better.
Even when my mom gave me a note with all of my symptoms, he still insisted that it was alcohol withdrawal until she finally put her foot down, and he agreed to refer me to NYU Medical Center, which is where I was ultimately diagnosed.
DAVIES: And let's just go over some of the other symptoms that developed over the time you were there. I mean, things happened to your speech, for example.
CAHALAN: Yes, during that time I slurred my words. I drooled. I didn't have proper control over my swallowing. My arms, I kept my arms out in unnatural poses. You know, at one point I was like the bride of Frankenstein. I kept my arms out rigidly. I was slow. I could hardly walk, and when I did, I needed to be supported.
When I got to the hospital at first, I was in a four-room unit, which is three other people in a room, and I started very psychotic. I believed that I could age people with my mind. If I looked at them, wrinkles would form, and if I looked away, they would suddenly, magically get younger. And I believed that my father had murdered my step-mother.
You know, I believed all these incredible paranoid, you know, a huge, extreme example of persecution complex. And then, as the days went on, I stopped being as psychotic, and I started entering into a catatonic stage, which was characterized by, you know, by just complete lack of emotion, you know, inability to relate or to read or hardly to be able to speak.
DAVIES: And throughout all this time, lots and lots of tests, blood tests, MRIs, scans of all kinds, right?
CAHALAN: Yes. I mean, about a million dollars worth of tests throughout it all. You know, every single test you can probably think of, I've had.
DAVIES: You know, you mentioned that there were some hospital videos in your room that caught some of you, and I've seen just a little snatch of one of those, and there's a moment when you look up at the camera with this panic in your eyes. And I have to say that three seconds is just heart-wrenching to see. And I wondered, what was it like for you to see this version of yourself that you didn't recognize?
CAHALAN: It's so hard to see this self, this other person, reaching out to you begging for help. I mean, that's basically what I was doing at that point. And, you know, she is so divorced from who I am now, but she's there, you know, and I don't remember her. I can't even really relate to her. But she exists. I see her in this video. It's so, it's so surreal and discomfiting.
You know, it's just, it really - it unsettles your identity and your sense of self and everything you think - I would never be capable of doing something like that, but there's electronic evidence that I did all these things, yeah.
DAVIES: Is it hard still to tell the story? Does it take something out of you?
CAHALAN: It is emotionally draining. You know, to write this book I needed to get a distance, a journalistic distance from that other self. That was really necessary because, you know, that whole passage at the diner is just - it's mortifying that I did that and I was capable of doing that. But to accurately report this, I needed to treat myself as a subject instead of relating to that person. I needed to keep that distance to really write about it. Because if I started thinking about really thinking about myself in that role, it would - it's so difficult to hear all these horrible things that I did.
DAVIES: We're speaking with Susannah Cahalan. Her account of her illness is called "Brain On Fire: My Month of Madness." We'll talk more after a short break. This is FRESH AIR.
(SOUNDBITE OF MUSIC)
DAVIES: If you're just joining us, my guest is Susannah Cahalan. She is a journalist for the New York Post who fought a rare and difficult neurological illness and tells the story in a book called "Brain On Fire: My Month of Madness."
So you're at the hospital at NYU for weeks and weeks, and your parents, who are separated, are caring for you - your boyfriend - and you're getting no better. Your symptoms change, but they're horrifying, and tests don't get you anywhere. And then there's a breakthrough that came with this doctor Souhel Nijjar. Do I have the name right?
CAHALAN: Yes, you do.
DAVIES: What was his specialty? What was his take on this?
CAHALAN: Well, you know, he's such a special doctor, and he had a reputation prior to this as being kind of the man to go to when nothing made sense. So he was called in to my case because, you know, no one had an answer still for my behaviors. You know, a psychiatric cause to my behavior was still something that was a possibility. In fact, at one point the diagnosis offered was schizoaffective disorder, which is a combination of mood and thought disorder.
You know, so people really didn't know what was going on. You know, there were a lot of theories but very few answers. And he came on the scene, and he was really the first doctor - and again, I don't remember this scene at all, this was entirely re-create for me. But he was one of the first doctors, my parents tell me, that actually sat down and asked me questions in a way that really captured that kind of full story.
You know, he was able to kind of incorporate the bedbugs and the numbness, and I also had, you know, increased heart rate, and all these various clues he was able to bring together. And he was able to do this with one very simple test, using only a piece of paper and a pencil.
DAVIES: Right. And it's interesting that him having the time and the patience to carefully listen to what you had gone through was so critical because he had to put various pieces together. And then there was this test, giving you a piece of paper and asking you to draw a clock and fill in the numbers one through 12 around the face of the clock. Tell us what happened.
CAHALAN: So when he gave me that paper, I drew a circle, and I drew the numbers one through 12 all on the right-hand side of the clock. So the left-hand side was blank, completely blank, which showed him that I was experiencing left-side spatial neglect, and likely the right side of my brain, responsible for the left field of vision, was inflamed.
He actually - after this moment, he took my parents out of the room and he told them: Her brain is on fire. He used those words. He said: Her brain is on fire. And my parents, instead of being horrified by this statement, because it's a pretty horrific statement, they were actually relieved to hear there was some kind of explanation for what was happening to me.
DAVIES: This was an inflammation of the brain tissue, right? But he had he to figure out what was causing it.
CAHALAN: Exactly. It was still not a full answer. It was just - he just offered one step towards an answer.
DAVIES: And he got in touch with some other scientists at the University of Pennsylvania, right, who had seen something similar, and what was it? I mean, what was causing your problem?
CAHALAN: Dr. Josep Dalmau at the University of Pennsylvania actually discovered this disease in 2007. It is called anti-NMDA receptor autoimmune encephalitis. And in short, it's when the body's immune system attacks the NMDA receptor in the brain.
DAVIES: And that was causing what to happen?
CAHALAN: So the NMDA receptor is located all over the brain, but it's in high concentrations in the frontal lobes and the hippocampus, and the frontal lobes are responsible for personality, a lot of higher functions, and the hippocampus is responsible for memory. So the NMDA receptor is a key building block of the brain, but it's also really important with memory and learning and certain types of behavior, as well.
So it makes sense when you mess with these NMDA receptors, you get these kind of - first you get these kind of psychotic behaviors, which I exhibited earlier on in the illness. And then as the disease progresses, you start to get that catatonic side of the illness, which is a lack of emotion, a lack of activity.
DAVIES: And to be sure about the diagnosis, they actually had to take a biopsy of your brain, right, I mean, get a little piece of brain tissue.
CAHALAN: Well actually, you know, in the end of the day it wasn't necessary to do a brain biopsy. What happened was they still didn't know the answer. So they wanted to make sure that his assumption from that clock drawing was true, that my brain was actually inflamed. So to prove that, they needed to get a piece of my brain, but to ultimately diagnose me, they used a spinal tap.
And they sent that spinal serum to the University of Pennsylvania, where I was ultimately diagnosed.
DAVIES: Susannah Cahalan's book is called "Brain On Fire." She'll be back in the second half of the show. I'm Dave Davies, and this is FRESH AIR.
(SOUNDBITE OF MUSIC)
DAVIES: This is FRESH AIR. I'm Dave Davies in for Terry Gross. We're speaking with Susannah Cahalan, a journalist who spent weeks exhibiting bizarre behavior in 2009 - the result of a rare autoimmune disorder that attacks the brain. Scientists believe the illness may account for many cases believed to be demonic possession over the centuries. Cahalan's book about her experience is called "Brain on Fire."
So where does this illness come from? Do you know why it afflicted you?
CAHALAN: That's still a question that doesn't have an answer. Doctors believe that you first have to have a genetic inclination to make certain - these certain antibodies that will attack the brain. And then secondly there needs to be an external trigger. A person coughing on you, you know, giving you the common cold or a flu which would, you know, for a person without this genetic inclination, that would make them sick, they would have the flu. But for me it could send my immune system kind of into overdrive and start this antibody production that ultimately attacked my brain.
DAVIES: Does this illness affect women more than men?
CAHALAN: Yes. About 75 percent of people affected are women. And a good - a good half are - maybe a little bit it less than half are children, and the average age is around 20 years old. So the average, you know, the most common patient is a woman in her 20s.
DAVIES: Do we know why? Why women?
CAHALAN: You know, that is another great question that has no answer. I mean I think it's a question for all autoimmune diseases in general. I mean there are 50 million people in the United States with autoimmune diseases, and about 75 percent of that total are women as well. And there are theories as to why women are so disproportionately affected, and you know, some of that comes down to hormonally or the fact that our immune systems might be just more complex because we have children, we have babies inside of us and, you know, our immune system has to know not to attack a fetus. You know, there are theories but there's no real answer as to why women are so affected by autoimmune diseases in general.
DAVIES: So you knew what you had. How was it treated?
CAHALAN: You know, it's fairly simple. It's a combination of steroids and immune therapy. So in short, basically what they want to do is suppress the immune system so it doesn't create these harmful antibodies that attack the NMDA receptor, and they also want to flush these antibodies out of the system and they use - to do this they use what's called IVIg treatment and Plasmapheresis.
DAVIES: And what does that mean? They are essentially kind of replacing your plasma with these cells that were attacking your brain...
DAVIES: ...with plasma that wasn't doing that?
CAHALAN: Yes. It's new and improved plasma, you know, in your system. It's actually - IVIg treatment is made of the plasma of a thousand donors. So it's healthy, new healthy antibodies that they flush into your system as they're also and meanwhile taking out those bad antibodies as well.
DAVIES: Right. So what this meant was a series of oral medications and IV medications taken over a period of many weeks, right? This wasn't something that you got an immediate shot and you got better, right?
CAHALAN: Oh, yes. This was many months. I would say about a good eight months.
DAVIES: And tell us about recovery. Do you recall the first thing you remember; I mean coming out of this blackout?
CAHALAN: It's so amorphous, but I do have a very early memory from that time. After I got out of the hospital - very soon after I was released from the hospital - I recall visiting Stephen's sister's family in New Jersey and I had brought all the stuffed animals that I had collected in the hospital to bring to the nieces and nephews. And I remember very little from that time, but I do remember horrified looks on people's faces. And later when I'm interviewing them, I mean they were pretty shocked by my state. I was slow and I could hardly move. I didn't even speak. I had, you know, my brain biopsy scar was still out, it was still, you know, I still had staples in my brain biopsy scar and, you know, I had sleep in my eye and my hair with stringy and dirty, and so that was my first real memory after the hospital. But it took a long time after that before I really felt myself and my body again.
DAVIES: And what was your memory like? Was your thinking disorganized? What were your abilities to speak like?
CAHALAN: It was - that was probably the most frustrating part of everything is that, you know, so many times I would repeat: I can't get my thoughts out. And I've heard that from a lot of other people suffering from any type of brain injury. It's like you have these thoughts, you're in there. You're there but you just can't communicate. So instead of trying, for a period of time I would just smile. I just sat there with a frozen grin on my face - meanwhile, I was suffering internally, trying to figure out something to say. But that was the - I would say the recovery part was just the hardest part on me personally.
DAVIES: When this happened, you were an independent person, you know, you had your own apartment, you were working. You ended up living with your parents because you had to give up the apartment, and you spent months just sort of becoming whole again. How long did it take before you were back at work and living on your own again?
CAHALAN: It took six months until I was back at work, and then another I'd say four months till I had moved out of my parent's house, they felt comfortable enough for me to move out of my mother's house and in with Stephen. That time I - even during that time, you know, six, nine months later, I still wasn't 100 percent myself again.
DAVIES: We're speaking with Susannah Cahalan. Her book is called "Brain on Fire: My Month of Madness." We'll talk more after a short break.
This is FRESH AIR.
(SOUNDBITE OF MUSIC)
DAVIES: If you're just joining us, our guest is Susannah Cahalan. She is a journalist for the New York Post, and tells the story of her battle with an unusual brain illness in her book "Brain on Fire: My Month of Madness."
You had quite a look at the American health care system, which has, you know, been a subject of major policy debate these days. You said your treatment cost $1 million?
DAVIES: Has it made you think about kind of how the system works and why it worked for you?
CAHALAN: Oh, very much so. I mean currently I actually pay for my own health insurance because I'm a freelancer. And just a few weeks ago, I had a bit of a scare. I had numbness in my left hand again, which was terrifying. And, you know, since I have to pay for my health insurance - and it's a very basic kind of health insurance, it's not the Cadillac that I had before - I went in for several tests. You know, when I go for tests now, it's like immediately I have to go in for an MRI, blood tests - you know, I had two MRI's, a blood test, another type of test. You know, I was just basically just one day filled with tests. And I recently got a check for $6,000 and I realized then how lucky I was to be covered then because I mean it would have bankrupted me.
DAVIES: Now, when you had the illness, you had health insurance through your employer, the New York Post, I assume, right?
DAVIES: But now you're a freelancer. Does that mean you have to get insurance on your own? Because this would certainly qualify as a pre-existing condition, I assume.
CAHALAN: Oh yes.
DAVIES: When you left your employer and got your own insurance, was it hard? I mean do people look at your previous medical problems and was that an issue?
CAHALAN: Luckily, it wasn't an issue for me. You know, somehow I got lucky and was able to secure this health insurance, but it's a very basic kind. I mean it's the kind with a $10,000 deductible. It is worse case scenario health insurance.
DAVIES: Now, does - are there relapses in your condition - I mean with others who have it?
CAHALAN: Unfortunately there are. You know, when I first - when I wrote the book, it was about 25 chance percent chance. Now, you know, as new studies are emerging, it's about 19 percent chance, so we shaved about six percent off, which does very little to ease my mind.
DAVIES: When you went back to work, you wrote about your experience for the Post and you looked into this illness. Do we know how long it has been around?
CAHALAN: You know, basically doctors believe it's been around as long as man. And you know, with that they actually believe that it is a possible cause of demonic possession throughout history, which if you think about - I mean it just blows the mind when you think about that.
DAVIES: Meaning people who are believed to be possessed of demons might have had the illness that afflicted you.
DAVIES: What are some of the...
CAHALAN: And when you think about...
CAHALAN: When you think about the symptoms, I mean in my case alone, I mean this kind of - this grandiosity, this violence. In a lot of children you see hypersexuality. You know, there is, I mean, you know, even my grunts and these guttural sounds that came from me sounded superhuman to someone who might, you know, be inclined to think that way. And, you know, I've talked to many people who've had this disease and one woman I spoke to actually asked for a priest because she said the devil is inside of me, I need it out. A little girl was grunting. They, you know, they had a monitor in her room and she was grunting so unnaturally that their parents - her parents - looked at each other and said, is she possessed? I mean they actually said that about a little girl.
DAVIES: And you knew some of these stories in part because when you wrote about it for the Post, people who had experienced these things got in contact with you, right?
CAHALAN: Yes. So many people have reached out and they just, they wanted to share their story. They wanted to talk to someone who has gone through this illness. When I was first diagnosed, I was the 217th person to be, to have this illness, and it was so lonely. You know, you felt that there was no one out there who could relate and after I wrote that story, it just opened me wide open. I mean I just - so many people reached out and they had horrible stories. I mean their stories were horrible and, you know, they, but then we also had so much in common. You know, there was one woman I spoke to, her father kept a journal and my father kept a journal. There were so many strange similarities. A 13-year-old girl tried to jump out of a moving car just like I did. It's just amazing. I don't know what to make of all the similarities, but it's amazing to have that support system of other people who've gone through something that you have as well.
DAVIES: Do you feel like cognitively you're fully back - I mean you can speak and think as clearly as you did before?
CAHALAN: You know, that's another thing it's hard for me to answer because throughout this whole process, when I was definitely not back, I was insisting that I was 100 percent. You know, at points where my speech was very slow and methodical and, you know, I was not myself, I was telling everyone I'm back, I'm fine. So I have proven to be a terrible judge - a terrible objective judge of my own self. So you know, I'm 27 now. I was 24 then. There are so many different life changing events that have happened, but you know, this central life changing event, you know, this disease, was profound, and it changed me. It definitely changed me. I want to say - and I really want to say yes, I'm back. I feel great, you know, I feel like myself. You know, it's a different self than it was before the illness. It's not that same person, but it's a new person.
DAVIES: Now, you said that there is like about a 19 percent chance - roughly 19 percent of people who have had this may get a relapse. Are you particularly careful in any way about your health, what you eat? Are there things that you can do to try and make sure you don't have a relapse?
CAHALAN: I don't know if you can control that. But I do know that if you do relapse, you have the same percentage chance of recovery if you do happen to get it again.
DAVIES: So you can be treated just as you were before?
CAHALAN: Yes. With a relapse you have the same percentage chance of recovery as you did before, and actually probably higher because you'll catch it earlier this time.
DAVIES: Now, this - you got this illness in 2009, right?
DAVIES: And it was relatively recently discovered. If you had gotten it in 2004, would things have gone very badly for you?
CAHALAN: I constantly think about that. I constantly think about the fact that two years really is a line between, you know, me sitting here now and me who knows where. You know, you know, I think about the people who, you know, had this illness before it was discovered and what happened to them. You know, did they end up in a psychiatric ward? Are they in a nursing home? Are they dead? You know, did they recover somewhat? Did they recover fully? You know, these are questions, you know, I don't know the answer to but those are questions that do haunt me.
DAVIES: Well, Susannah Cahalan, I wish you good health and success in your career, and I want to thank you so much for sharing your story with us.
CAHALAN: Thank you so much for having me.
DAVIES: Susannah Cahalan's book is called "Brain on Fire." Transcript provided by NPR, Copyright NPR.