As someone who has been both correctly diagnosed and misdiagnosed with conditions concerning my brain, I was really interested in Susannah Cahalan’s story once I heard about it (I’m also just a weird disease junkie in general). Anti-NMDA receptor encephalitis is a terrifying thing — one of those autoimmune disorders where the body just goes into attack mode on itself for unknown reasons. It results in a cascade of symptoms, starting from something that looks like the flu to a range of major behavior disturbances to seizures to catatonia. It was identified in 2007, but people believe it could have been with us for centuries — its symptoms sound so much like what used to result in involuntary confinement or exorcism or outright murder.
The story itself takes place over the course of 2009. Susannah gets ill, spirals, is hospitalized, is finally diagnosed, and finally begins to recover all within the space of a year. It seems impossible that this happens so quickly, as ill as she becomes, but she was extremely lucky to have been who and where she was, and she will be one of the first to admit that fact. Had she not had parents who could afford her care, not had insurance, not been in New York, not been white, not had a support system who could stay with her around the clock, not had access to doctors who were literally on the cutting edge of her condition, she very likely would not have recovered. Her tale is harrowing even with all those things working in her favor. She is still repeatedly misdiagnosed — written off at one point by a neurologist as a young lady who parties too much and simply needs to lay off the booze. She narrowly escapes psychiatric commitment a few times because her paranoia and hallucinations make her such a difficult patient. Her story, even with its happy ending, is still a cautionary tale about misdiagnosis, about the importance of finding the right doctor, about how much of the human brain is still a mystery.
My Month of Madness tells a good story. Cahalan has clearly done her research, and provides all the background a lay reader might need when the topic moves into the more medical parts. She manages to explain things thoroughly enough without getting into the weeds, which is useful in a book about a rare brain condition dealing with a lot of initialisms and medical jargon. She also is clear that she has to rely a lot on the memories of the others around her, because she herself has very little recall of what happened to her while she was sick. So there is a certain amount of detachment to the story, both because Cahalan is a reporter by trade, and also because it’s almost like a lot of these experiences weren’t exactly hers. But generally it’s a look into one woman’s descent into and recovery from a bizarre illness and what that did to her family and friends. It’s also a brief picture of the medical team who worked to make sure she came back, one of whom, Dr. Souhel Najjar, is profiled in some detail. He seems like a very interesting guy with a fascinating story of his own.
If you’re into medical memoirs and stories about strange or rare diseases, this is an interesting one. It was a quick read, Cahalan is an engaging author, and she explains the concepts well. I’m left wondering, as she is, how many people have been and still are misdiagnosed who actually have some version of this illness. But hopefully the more people who read this will continue to spread awareness and more light will continue to come from her darkness. As for Cahalan herself, she continues to write — she released The Great Pretender last year, about the Rosenhan experiment and the treatment of the mentally ill.
Cahalan’s story was also made into a film in 2016 starring Chloe Grace Moretz which is available on Netflix. I have not seen it, and it doesn’t have great reviews, so take that as you will.