Late last year, I came across what is, in my opinion, one of the most important books of 2012, Brain on Fire: My Month of Madness by Susannah Cahalan (Free Press, 2012). In it, the New York Post reporter chronicles her harrowing battle with a rare autoimmune disease known as anti-NMDA Receptor Encephalitis, first discovered in 2007 by Dr. Josep Dalmau at the University of Pennsylvania. In fact, she was only the 217th person in the world to be diagnosed with the condition. Recently, I had the opportunity to speak with Susannah about her experience. Read on to see what she had to say…
Andrew DeCanniere (AD): Getting to your story, the thing that was most striking to me about the condition you were diagnosed with is that all the symptoms are so disconnected from one another that you wouldn’t think that it is symptomatic of anything in particular.
Susannah Cahalan (SC): Right. The beginning stages were just kind of so disparate. It was just behaviors that are a little bit abnormal and then some numbness in my hand that didn’t seem at all related.
AD: No one would really think that it is anything more than your garden-variety illness.
SC: Right. They thought that it was Mono at first. And they didn’t really connect the behavioral changes, because I didn’t really communicate my behavioral changes to anybody in the beginning. I just felt off. I didn’t really tell anyone about that. I remember talking to one of my friends and saying like “I’m all weird about my boyfriend.” I’m acting all strange. I had just gone on birth control, so I thought maybe that was part of it, or maybe I was just not feeling like myself, so I didn’t connect the two at first at all.
AD: Now so many people turn to WebMD when they suspect something is wrong, but back in 2009 when you were diagnosed -- and certainly not two or three years before -- there wouldn’t have been all this information that would have been readily available about the disease [anti-NMDA Receptor Encephalitis], so it’s not as if that would have been an option.
SC: I mean the disease itself was discovered in 2007. So, when I finally knew what was wrong with me, and looked it up, it was basically just medical journals and very abstract things that I couldn’t at all understand at the time.
AD: Right. Apart from that, I don’t think any information on it would have been readily accessible.
SC: There was one Diagnosis column in the New York Times -- if you’re familiar with that column -- where they cover these kinds of crazy illnesses and they talk about how a doctor figures it out. Anti-NMDA Receptor Autoimmune Encephalitis was in the New York Times Diagnosis column in 2008 or something. So that was the only mass media that had ever covered the illness prior to my getting sick.
AD: And I don’t know about you, but I certainly don’t delve into the medical journals on a regular basis. Another thing that struck me is that even with the support system that you have -- with your family at your side -- it seems that at first it was really difficult to get the proper care yourself.
SC: Definitely. But without them fighting for me -- because I couldn’t fight for myself at that point -- I don’t think I would have found a diagnosis on my own.
AD: The first doctor that you went to, Dr. Bailey, seems to have been so adamant about his initial diagnosis. It seemed he truly believed these symptoms were simply the result of excessive alcohol consumption, and he couldn’t be convinced that it might be something else.
SC: Oh yeah. He was convinced. He was really convinced that I was drinking too much and that I was stressed out. He almost couldn’t be convinced otherwise.
AD: It’s like he was going with some sort of stereotype.
AD: It seems to have been something along the lines of here’s another young, hard drinking, hard partying twenty-something professional. Then, more shockingly, you go back to him with your mom and, though someone had been with you at all times because of your illness – which means you would have been observed at all times -- and your mom tells him that you haven’t had a drop of anything to drink, he still thought that he was right.
SC: Right. My mom was able to push him and say this just doesn’t make any sense. Eventually he said “Fine. We’ll do it your way,” but he was very hesitant about it and he wasn’t very convinced.
AD: He really had to be pushed to even get you admitted to the hospital.
SC: She had to throw a list of my symptoms at him to actually admit me to the hospital.
AD: Possibly the only more incredible thing to me about this whole thing is when you went back to him, after you were back at work, was his reaction. I would have been angry.
SC: I was at first. I was. It took me a while to come to terms with it and be okay with it in a way, and kind of forgive him and be a little bit more journalistic in my approach as opposed to emotional. So my first draft of the book was very tough on him, but as I grew as a person and a writer and I was able to maintain a journalistic distance, I realized that he was representative of a broken system. He himself was wrong, but he was also part of a bad system.
AD: I think it definitely points to shortcomings. Obviously in this country [when it comes to healthcare] we are in a much better position than in a number of other countries. We have access to much better care than in many parts of the world, for example. But I think there’s still so far to go.
SC: I agree with you completely. I read something in the Times today about for-profit medicine. It’s really scary when you take all of that into account.
AD: I certainly know that he doesn’t represent everybody, but there are definitely things that need to be ironed out. That’s the most diplomatic way that I can think of putting it. Another point that stuck out to me is that though now there is an established series of test to diagnose your condition, back when you were admitted this really wasn’t a known thing, so they had to do a whole bunch of tests to determine what it could be. There was a whole bunch that they had to rule out first.
SC: Exactly. That was a big thing. The ruling out of everything.
AD: I know that at first there was just a whole series of diagnoses, basically. That’s obviously changed, but I think you said it cost something like a million dollars?
SC: Yes. A million dollars in tests.
AD: I can’t even imagine what would happen without insurance.
SC: Yeah. They wouldn’t have been able to see Dr. Najjar, most likely, without insurance.
AD: Now that’s supposedly changing. Everyone’s supposed to be insured, in theory.
SC: I don’t know how much is changing really, and I think that even if you have very terrible insurance, I’m not sure you’re going to be at NYU’s epilepsy center because it is very expensive to be there per day. If insurance isn’t covering it, most people cannot afford that kind of care.
AD: The recovery part of it in and of itself seems to have been the most difficult part for you. There’s so much that goes into the recovery alone.
SC: I think it was the most difficult for me to go through and the most difficult part for me to write.
AD: For example, there’s this part in your book where this woman comes up to your mom, and she begins to speak as if you’re not aware of what’s going on or as if you’re not there, when in reality, you are there. You’re just not necessarily being able communicate what you want to communicate, which seems to have been lost on that woman.
SC: Right. You’re kind of there. You’re still kind of cognizant of your inabilities. It’s not like you’re completely there. It’s not like you’re sitting there without any clue of what’s going on. It’s that you do have a clue and you understand how much you are not yourself. And I think that was just really painful to go through and hard to recount as well. It’s hard to write about yourself at 90 percent yourself or 80 percent yourself. You know what I mean? It’s a hard thing to communicate to a reader as well… especially to someone who hasn’t gone through something like that.
AD: I can only imagine. Especially when you can’t necessarily share how you’re feeling.
SC: You can’t really communicate. You can experience, but you can’t really communicate.
AD: It surprised me that something so low-tech is used to diagnose the condition.
SC: That’s what’s amazing about it. The actual diagnosis was helped by a relatively simple test, the clock test. Then it was confirmed through a spinal tap. Spinal taps have been around forever. It’s a combination of intelligent, smart thinking and simple thinking and cutting-edge neuroscience. So, you can’t just say we can just go back to simple times because that doesn’t really work, either. It’s the combination of working simply and having these cutting edge tools at your fingertips as well. The real cutting-edge part was Dr. Dalmau and the discovery of the new disease, and how he did that. It was also very much trial-and-error and intelligent -- kind of smart, simple thinking as well. It just shows you that with all of the technology we have, it still takes a creative thinker to make it all work.
AD: It’s not all about the new technology that’s available. That alone is not going to do it, obviously. When it comes to this sort of research, it almost seems like the more we know, the more you become aware of how little we know and how far we have to go.
SC: Very much so. That was a kind of a shock for me while researching this. I’d think I’d be asking a stupid question, but then these amazing doctors wouldn’t have an answer for me. So I realized “Wow. We really are still in the dark ages.”
AD: Just goes to show, you’d think we progressed so far, and to a certain extent we have, but I think that the more we learn the more apparent it is that there’s so much further to go and so much more to understand. It’s almost seems never ending. I think that part of what’s so great about the book is that you really do a wonderful job of explaining a lot of this stuff. I think that if people think of a medical mystery novel -- if you want to call it that -- which can involve a lot of medical jargon, it is easy to get lost in a lot of that sort of stuff. Yours explains it wonderfully, in such a way that the reader can easily follow along.
SC: Thank you so much. That’s wonderful to hear, because that was important to me.
AD: The condition that you were diagnosed with, anti-NMDA Receptor Encephalitis --you said basically that part of what it does is it targets much of that which makes you who you are, higher functions, your personality. I think that’s a good way of explaining it?
SC: I think that’s a good way of explaining it, definitely.
AD: To me that would be a scary thing. It seems like before you enter the hospital, when you are writing in your computer diary, through the series of Word documents you type up on your computer, it seems like you were very aware of losing your self.
SC: Yeah. I think so. I was in such a frenzied rush writing those -- I don’t really remember writing them that much, that coherently. Looking back now I can sense that there’s definitely a foreboding there.
AD: That would’ve had to be just a really difficult position to be in.
SC: Oh, definitely. It’s very strange reading something that you hardly remember writing. You know, you were in a different mind state. It’s just very strange.
AD: I know that you said that what ended up being the cover photo was taken while this was all going on?
SC: I did. I took the photo right before I went into the hospital, when I was home from work for one of those weeks where I took off a bunch of days. For some reason I took all these photos of myself and my cat. They were just very strange pictures and that was one of them. I totally forgot about that until my publisher asked me if I had any pictures of myself during that time, and I looked through my MacBook Photo Booth and so that is where they originate.
AD: To me, being in that sort of position where you kind of realize what is going on and don’t really know what to do about it, would be frightening. In the book you also touch on that just two years or three years separate you from those who went undiagnosed, or were potentially misdiagnosed, and ultimately ended up in a facility never knowing that they have this condition, which would potentially have been treatable.
SC: I’m hoping that changes, but it’s still happening.
AD: I don’t know how common it is now for people to be tested for it, or if there’s anything that can be done for them after the fact. It does seem like, for someone who does indeed have the condition, it is time sensitive.
SC: Very much. I have had calls from people who think that they have it, and it was in the 80’s, and they have cognitive difficulties or disabilities following that. But it is, it’s very much time-sensitive.
AD: The longer it goes on, the more damage that can be done, and the bigger the risk that the damage may be permanent.
SC: Yes. Exactly. Basically it can affect the receptors in the brain in a long-term way.
AD: And what fascinates me is that this has been around forever basically. I know you write that in the late 80’s, a French Canadian pediatrician treated a number of kids who had a similar sort of pattern of symptoms, and were diagnosed with the generic “encephalitis of an unknown origin.” They could have had this disease, for example. A lot of people have also been misdiagnosed with Autism, and in reality they have this condition. One doctor you cite in your book actually says that out of five million people diagnosed with Autism, about 100,000 could actually have been misdiagnosed and indeed be afflicted with this condition instead and they just don’t know it.
SC: That’s kind of a conjecture thing. Even if it’s just five percent or one percent, that’s still a good, sizable chunk. There’s this possibility that they have been misdiagnosed and that they have something else.
AD: That’s alarming. That’s why it is so good that it is being recognized, that the word is getting out there with this book. Because maybe there still is something that could be done for some of these people, they can still be treated. Not to over politicize the book, but what do you feel needs to change about the healthcare system?
SC: I think that doctors need to be rewarded for time they spend with patients, as opposed to being rewarded for the number of tests that they issue to patients. I don’t know how that’s possible to do, but you know doctors aren’t paid per hour. Right? So, the doctor who spent five minutes with me, who diagnosed me with alcohol withdrawal, gets the same amount of money as Dr. Souhel Najjar who spent an hour of his time with me. Doctors aren’t rewarded for their time and diligence and consideration. Instead they’re rewarded for the number of tests that they give. So, I think something in that needs to change. I don’t know how to change it, but something needs to change there.
AD: I think part of that mindset or culture -- when it comes to ordering many tests, often more than are needed to diagnose the problem -- is that they also want to make sure they’re protected from any sort of lawsuit as well. So that if one test is good, well then, ten must be better.
AD: And then, as you say, they are often overscheduled.
SC: Definitely. That’s just to make money. That’s how they make money, which is terrible.
AD: And then you try to squeeze everyone in.
SC: I know. It’s just not the way it should be. It’s a calling instead of a career. They are patients, they’re not clients. You know?
Susannah Cahalan is the author of the New York Times bestseller Brain on Fire: My Month of Madness and a reporter at the New York Post. You can find out more about Susannah and her book by logging onto her website, www.susannahcahalan.com and on Facebook at www.facebook.com/brainonfirebook.
Photos: Susannah Cahalan
Published on Feb 19, 2013