The doctors don’t actually know how it began for me. What’s clear is that if that man had sneezed on you, you’d most likely just get a cold. For me, it flipped my universe upside down and very nearly sent me to an asylum for life.
It all probably started with a bedbug scare, Susannah Cahalan feels. One day, she sees bite/itch marks on her arms and that makes her obsessively fear that the parasites have taken up residence in her New York City apartment, even though thorough examinations by a licensed exterminator turned up nothing. Gradually, her persona changes subtly, when she starts exhibiting excessive mirth alternating with fear and gloominess. She begins to feel incompetent and diffident in her career and feels that the colors in her vision are enhanced. Then she has a seizure. What follows is a month of wrong diagnoses, almost-schizophrenic symptoms, aggression, while the doctors almost give up on her.
More than two years ago, when my brother was hospitalized after suffering inexplicable seizures and diagnosed with a generic term ('encephalitis') because doctors couldn't figure out what the problem was, my cousin and I tried to do our little bit by scouring medical documents and sometimes, simply Googling (which led to its own train of despair, of course because some of the results were scary enough to give me an anxiety attack). During this search, my cousin came across this article written by Susannah Cahalan, summarizing what she went through and how she was doing then. When I found out that Cahalan had written a book narrating her illness, I wanted to read it.
To write Brain on Fire, Cahalan interviews several people to get her story. Since she had no clear recollection of what went on during those days, except for some vague memories of the delusions that gripped her, her parents, brother, friends, colleagues, doctors, nurses, among many others fill in the blanks. Cahalan doesn't shy away from confessing the worst of her actions while under the hold of the illness - some of her experiences embarrass her terribly. But mostly she is still baffled by the person she was. Occasionally, she gets a bit repetitive in her narration as she tries to convey the full impact of what she went through. Or probably, it was just me who found it repetitive after already having been an observer to a similar experience.
I found reading about her recovery to be far more profound. Battling an illness is one thing, dealing with its repercussions is a whole other bag of trauma. Cahalan found herself awake one day, with no idea of what happened in that one month. Her cognitive skills were very poor, her memory abilities were on a vacation, and her movements were horribly uncoordinated. She found it hard to talk to her friends or do simple things like wear a dress. In a strange way, her battle was only beginning. This part of the book left me very sad but she does triumph in the end. There are people who believe in her and who help her overcome her disabilities.
There were some details that I found hard to believe though. For instance, when Cahalan was taken to the ER after her first seizure, the doctors were quick to discharge her even though her boyfriend insisted that Cahalan was behaving weirdly (although it was not too weird from a stranger's perspective). Even later, when her family would insist that something was wrong, all the doctors with a say in her health would shrug no. It took another seizure before anyone in the medical department would take them seriously. I also found it surprising that her doctors withheld considerable information from her family, such as suggestions to move her to the psychiatric ward.
From a personal standpoint, Brain on Fire sometimes felt like a ride through my memory. Occasionally, it brought to my mind some memories I had subconsciously suppressed, which were similar to what Cahalan suffered. It also helped me understand better what my brother went through at that time and what he probably is experiencing right now, in the aftermath of the illness. Just like Cahalan's father, I used to take notes almost daily when my brother was hospitalized. I haven't however been able to read them since. I could easily empathize with her father who couldn't imagine his daughter demonized by a strange disease.
In addition to sharing her experiences, Cahalan also goes one step further. The nature of her illness was such that it was easy for patients suffering from her same illness to have been misdiagnosed and sent to a mental institution instead. The doctor who treated her so much as admitted that. Cahalan achnowledges that she was lucky to have a firm support system in place, a good health insurance to take care of majority of her expenses, a family with the means to pay off her bills and a respectable job to come back to. She feels that these factors helped in giving her a successful treatment and I could see what she meant. She was thiscloseto becoming another inmate in a psychiatric ward. She raises plenty of questions in her book about all the other lost cases, the many other patients who were probably branded as schizophrenic when their problem could likely be a treatable neurological disorder.
Although I already knew Cahalan's story, I enjoyed reading her book - her story was compelling and hard to put down. Her big moment when there's finally a diagnosis was especially sweet to read. Brain on Fire was a fast read with quite short chapters (which is always a plus in my perspective). There was a sense of urgency and purpose in her writing tone that went well with the nature of the experience. And towards the end, when she tries to put together the pieces, the tone slows down to one of shock, loss, yearning and finally acceptance.
I borrowed this book from the good old library.