Well, this disease sounds terrifying…

I’ve seen Brain on Fire a few times at the bookstore, and it was the subtitle that kept catching my eye – “My Month of Madness” – and so when I found it on sale, I picked it up. I thought I would be getting a book about a Nellie Bly-style reporter who feigns mental illness to write an expose on our country’s health care system. Instead, I got a terrifying account of what happens when a young woman can’t get the right diagnosis, and how quickly a disease can spread.

Susannah Cahalan is in her early 20s, an up and coming New York Post reporter, when she first experiences bizarre symptoms that she can’t explain. At first blush, it sounds as though she’s showing signs of the beginnings of schizophrenia, or perhaps even some sort of bizarre opiod reaction. She scratches at her arms, experiences paranoia, is feverish, hallucinates that her apartment is infested with bed bugs, and finally, begins having seizures. The doctor can’t find anything wrong, and sends her on her way, actually sending her to her OB-GYN thinking that maybe she’s having a reaction to her birth control. (Which is a move that made zero sense to me, but that’s why I’m not a doctor.) The gynecologist can’t find anything wrong with her, but recommends that she stop taking her pill, and when the seizures don’t go away and her paranoia becomes more extreme, her parents and boyfriend finally step in, and raise holy hell to get her the help she needs.

After hundreds of tests and hundreds of thousands of dollars, during which time Cahalan is often strapped to her bed because of her violent outbursts, she is becoming increasingly catatonic, her fever won’t abate, and the doctors are on the verge of giving up, ready to commit her to a mental institution. But then, in a very lucky coincidence, she meets Dr. Souhel Najjar, who is, she says, “the man you go to when nothing made sense”. Dr. Najjar gives her a piece of paper and a pencil, and asks her to draw a clock. Cahalan does, but all of the numbers are on one side of the clock, and a lightbulb goes off in Dr. Najjar’s head: whatever is happening to Cahalan is happening to her brain. He suspects that she has autoimmune encephalitis, and a second physician, Dr. Joseph Dalmua, confirms the diagnosis. Cahalan’s brain is, literally, on fire.

Autoimmune encephalitis is, essentially, a medical condition in which the body’s own immune system attacks the brain. It can affect all ages, races, and genders, but it is most common in young women. In fact, according to the Autoimmune Encephalitis Association, 75% of all autoimmune disease patients are women. Research in to the disease is quite new, and they are still not altogether sure how one contracts it. Sometimes it begins in tumors generally located in the ovaries, but more often, it appears as though it’s a result of exposure to a common bacteria. Cahalan posits in the later part of the book – and this was a running thread when I did further research – that many people who were consigned to insane asylums in the past were actually suffering from the condition, but its symptoms so closely mimic schizoid behavior that physicians misdiagnosed quite a number of patients.

Cahalan’s story is impeccably researched. She has no memory of these events, only of waking up in the hospital, so even though she writes in first person, everything had to be reconstructed through hundreds of hours of interviews with her doctors, nurses, coworkers, friends, and parents. She had access to the notebook her parents used to communicate; divorced, they often took turns sitting with her in the hospital and although one gets the sense that their post-divorce relationship wasn’t exactly warm and fuzzy, they absolutely presented a united front and fought like hell for their daughter. Some of her time in the hospital was videotaped, and I can’t imagine the strength it must have required to watch those videos.

Throughout the book, Cahalan makes a couple of references to the cost of her treatment. In more than one instance, she says that the cost of that month of madness was over a million dollars, and my guess is that’s a conservative estimate. There’s no mention of what continued maintenance and treatment costs are. Thankfully, Cahalan had health insurance through her employer, but it did make me wonder about the state of health insurance and medical care in this country. Would she have received the same treatment or had access to the same physicians if she were in a public hospital? If she were on a state or federal health insurance plan? What if her deductible was 20%? That’s $200,000, for a journalist who is still paying back student loans and probably bringing home less than a quarter of that annually. Brain on Fire isn’t the book to dissect the pros and cons of our health care system and Cahalan never makes a statement either way, but it is definitely food for thought.

I wasn’t able to find much on what Cahalan is doing now, but a quick, very non-stalkerish Google search tells me that she married Stephen, the absolutely incredibly boyfriend who stood by her during this incredibly difficult time. It appears as though she’s still in contact with her doctors and does some speaking about her condition and other rare diseases. I hope she’s doing well and is happy and healthy.

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