Imagine plunging into a hole from which you can’t escape. A personal hell of mental illness, arriving without warning or known predisposition. And there you are, trapped. No diagnosis. No treatment. That was journalist Susannah Cahalan’s life in 2007. One minute a young professional charging uphill in the competitive New York City media world — the next minute collapsing into an inner state that defied clinical clarity. A descent from normalcy to catatonia and near death.
With the precision of an investigative journalist, she reconstructed what happened in her memoir, Brain on Fire: My Month of Madness. One reviewer wrote of the New York Times best-seller that Cahalan “describes in chilling detail her descent into an inexplicable madness…. It’s a story of everyday heroes — her family, friends and the determined doctors who steadfastly fought for her.”
Cahalan knows the terror of not knowing what ails you and dedicates the book to those without a diagnosis. Stanford Medicine executive editor Paul Costello spoke to her from her office at the New York Post where she’s back at journalism full time. “I do book reviews and a lot of science and health-related articles, which I really enjoy now — something that happened after I was sick.”
Paul Costello: One day you are a carefree New York journalist; the next day you’re consumed by a raging illness of unknown dimensions. What happened?
Susannah Cahalan: It started slowly at first, and then very quickly escalated. At first, it was just feeling off, just like having a bad day. Then, many bad days in a row. I couldn’t concentrate at work. I just thought, “Oh, I have some kind of flu, or I’m just in a bad mood.” But I also started getting paranoid. Looking back now, I didn’t connect the two and realize that that was the beginning.
Costello: As the illness proceeded you became more consumed with paranoia. You thought you were having a breakdown.
Cahalan: The lethargy was first. Then, I started noticing that I couldn’t control my emotions. One second, I would be the happiest I’ve ever felt in my life. Beaming. Very manic. The next moment, I’m crying hysterically. I was having some cognitive issues as well. I found I could no longer hear what someone was saying and actually translate it into words.
Costello: You endured a long period of misdiagnosis and no diagnosis. What’s it like to have a medical condition that you can’t explain?
Cahalan: It is utterly terrifying and lonely. I feel for people who don’t have a proper diagnosis. It felt very claustrophobic. I was experiencing these emotions and feelings. I was hallucinating. You feel trapped inside your body. When no one can give you an answer, it just completely flips your worldview upside down.
Costello: As the illness progresses, no one can diagnose it?
Cahalan: On paper, I am perfectly healthy, but in person I can’t even put together a sentence. I am garbling words. I’m drooling. I can hardly even swallow liquids. Every panel of tests you can possibly think of was conducted on me. Nothing’s coming back. I think for doctors who face these situations it’s very frustrating.
Costello: When did your illness begin to get some clinical clarity?
Cahalan: Without a doubt it started with Dr. Souhel Najjar, a neurologist and epileptologist at NYU. He was called in on the case because he had this reputation as a maverick. He began with a wide-ranging health history — three handwritten pages of notes. At one point he turned to me and he had this eureka moment and he thought: “I’m going to do a simple test and see what happens.” He handed me a piece of unlined paper and asked me to draw a clock. It took me a few times to get the circle. Finally I drew a circle and very slowly I drew each number in.
When I was finished, Dr. Najjar was so excited by what he saw. I had squished all of the numbers on the right side of the clock so that the 12 landed where the 6 should have been. It revealed to him that my brain was not seeing the world in the way it should. It was suffering from visual-spatial neglect. I was just ignoring the left side of my universe. That clock was proof to him that this was an organic disease — a neurological condition. It gave him the confidence to move forward and do a brain biopsy to confirm that.
Costello: At that point he told your parents that essentially your brain was on fire?
Cahalan: Yes. That was his layman’s term of saying there was serious inflammation in my brain and there was impairment there. Within a week of that I received the diagnosis of anti-NMDA receptor encephalitis.
Costello: What have you learned about your illness?
Cahalan: Anti-NMDA receptor autoimmune encephalitis is one of over 13 different types of autoimmune encephalitis. With anti-NMDA, the body’s immune system targets and attaches to the NMDA receptors in the brain. NMDA receptors are located all over the brain — the highest concentrations in the frontal lobes and the hippocampus. It explains why you have a lot of memory deficits and behavioral changes. The disease was only discovered in 2007. I was treated in 2009 and was one of the first 300 patients to be diagnosed with the disease.
Costello: How much did good luck play a part of your survival? Luck that your parents pursued a diagnosis and treatment with a vengeance. Luck that you ended up at the right institution for your care.
Cahalan: I realize how lucky I am. I hope one day that luck does not play a role in this disease. I really hope that the playing field is leveled and that everyone has the same luck that I did.
Costello: Are you a different person now?
Cahalan: My whole life is broken up into pre- and post- this disease. It has changed everything. It has changed my goals in life, where I put my energies and my interests. It has changed the way I appreciate life too. You can’t help but come away from a near-death experience and not look at your life differently.
Costello: Now five years after your illness, is there anything you’d like to say to the medical community?
Cahalan: Dr. Najjar shows the power of the patient history, the patient narrative and how important it is to listen to patients and families. The awareness that autoimmune encephalitis exists is extremely important. I have now listened to many people’s stories who have had this disease. People who are in a coma for six months, people who are very close to death, people who look like they will never return, who come back. Devastated at its height, you can recover. My final suggestion is that this disease required the cooperation of many different disciplines. There’s not just one doctor. It’s really important to learn how multidisciplinary care is really important to patient success.
Costello: You never really discovered the cause of your illness. Is there a deep fear of not knowing?
Cahalan: There is a fear. There is a relapse rate too; I think it’s about 18 percent. For the rest of my life it is a little bit of a specter following me around, the fear of it happening again. It doesn’t change the way I live my life, but it does follow me.
Costello: I understand Hollywood’s interested in a film. Are you ready for your close-up?
Cahalan: Oh, gosh. (laughs) Keep your fingers crossed for that. It’s been optioned by the actress Charlize Theron. She’s the producer. Dakota Fanning is slated to, it’s so bizarre to even say it, but yes, Dakota Fanning is attached to star as me.