Dr. Najjar saw tears gather at the corners of my eyes. I sat up and threw my arms around him. For him, it was another crucial moment in my case: he could sense that I was still in there, somewhere. But it was just a blip. After that outpouring, I lay back down and dozed off, exhausted by the brief display of emotion. But he knew I was there, and he would not give up on me. He motioned for my parents to follow him outside the room.
“Her brain is on fire,” he repeated. They nodded, eyes wide. “Her brain is under attack by her own body.”
Part memoir, part medical mystery, Brain on Fire recounts Susannah Cahalan’s sudden descent into mental illness (which presented as schizophrenia, paranoia, and catatonia), and the dedicated efforts made by her friends and family to force the medical community to find a physical cause for her swift decline and cure it. As a young journalist who had no memory of her time in hospital during her illness, Cahalan conducted interviews, read her medical reports, and perhaps most chillingly, watched surveillance videos of herself acting out from her hospital bed (which she had no memory of at all; this was like watching a deranged stranger); and while she was able to put together this comprehensive account of her experience, there is a detached journalistic tone that I found distancing. I’d give this book a 3.5 if I could, and while yesterday I might have rounded up to four stars for the important role Cahalan’s story seems to have played for others with her same condition, today I feel like rounding down to three for that detachment; I have definitely seen other investigative journalists bring their subjects more to life than Cahalan has done here for her own self, and I am feeling the lack. Still, a very interesting read.
From here on, I remember only very few bits and pieces, mostly hallucinatory, from the time in the hospital. Unlike before, there are now no glimmers of the reliable “I”, the Susannah I had been for the previous twenty-four years. Though I had been gradually losing more and more of myself over the past few weeks, the break between my consciousness and my physical body was now finally fully complete. In essence, I was gone. I wish I could understand my behaviors and motivations during this time, but there was no rational consciousness operating, nothing I could access anymore, then or now. This was the beginning of my lost month of madness.
In a new relationship, writing for the New York Post, living on her own in Hell’s Kitchen: everything seemed to be going right for Susannah Cahalan. But what started as a numbness in her left hand and progressed to mood swings and seizures, soon landed the twenty-four-year-old in the epilepsy wing of NYU Hospital. On the one hand, as a Canadian, I was gobsmacked by Cahalan’s swift access to medical care: She went to her doctor about the numbness and was sent to a noted neurologist the same day; and after a normal examination, he sent her for an MRI the same day. That simply couldn’t happen that quickly here. On the other hand, because Cahalan had told the neurologist that she did usually have a couple glasses of wine to unwind at the end of the day, he diagnosed her with stress and alcoholism and advised her to stop partying (in her medical file, this doctor apparently wrote that she admitted to drinking a couple of bottles of wine per day); she was sent home and her condition rapidly declined. So, despite a large team of specialists working her case in hospital — and despite what she reports as a million dollars worth of tests — it was a shot-in-the-dark cognitive test administered by a new neurologist that first identified what was happening to Cahalan. I will operate under the assumption that this book is old enough that the medical mystery aspect can no longer be considered a spoiler: After a couple of spinal taps, it was confirmed that Cahalan was suffering from an autoimmune disorder — antibodies were attacking her own brain and causing the mental symptoms — and she was cured by a course of steroids and blood transfusions. This type of disorder is usually caused by a “teratome” tumour on a young woman’s ovaries (this was not actually the case for Cahalan; her cause remains a mystery), and that type of tumour sounded so disturbing that I’ll include what she wrote about it:
When this type of tumor was identified in the late 1800s, a German doctor christened it “teratome” from the Greek teraton, which means monster. These twisted cysts were a source of fascination even when there was no name for them: the first description dates back to a Babylonian text from 600 B.C. These masses of tissue range in size from microscopic to fist sized (or even bigger) and contain hair, teeth, bone, and sometimes even eyes, limbs, and brain tissue. They are often located in the reproductive organs, brain, skull, tongue, and neck and resemble pus-soaked hairballs.
I enjoyed how Cahalan handled the medical writing (useful information without getting bogged down in the science) and how she approached her own experience as a mystery to be solved; as a tabloid journalist, she often ended her short chapters with propulsive foreshadowing, as in That would be the last interview I conducted for seven months or regarding her mother It was the first and last time she would allow herself to completely succumb to her emotions in the frightening months that followed. This was very readable, if lacking in a personal or philosophical response to Cahalan’s missing month.
If he found that I had anti-NMDA-receptor autoimmune encephalitis, it would make me just the 217th person worldwide to have been diagnosed since 2007. It begged the question: If it took so long for one of the best hospitals in the world to get to this step, how many other people were going untreated, diagnosed with a mental illness or condemned to a life in a nursing home or a psychiatric ward?
In the end, this was the most interesting question discussed: How many people suffering from this sort of disorder have been misdiagnosed over the years as autistic or schizophrenic, or even, as possessed by a demon; how many people have been locked up or lobotomised or burned at the stake? Cahalan first wrote about her experience in an article for the New York Post, and after appearing on the Today Show, she began to receive messages from people who wondered if their own loved ones could be suffering from the same condition. The book ends with a few of these interactions, and if Cahalan’s story led to other doctors testing for her rare condition, then I can’t deny that this is an important story to have told: Cahalan concludes, “When I was diagnosed, it was believed that 90 percent of cases went undiagnosed. Now many doctors know to test for it, and if it is found early and treated aggressively, 81 percent of patients recover fully.” (*With the caveat that there was still a 7% mortality rate; not everyone can be as lucky as the author.) Solid three and a half stars; I would need something more in order to round up.
Not interesting enough to put in my Goodreads review, but interesting to me: It was funny in a book on memory loss and confusion to come across a word like "wayworn" in the text and be pulled up short. I looked at that word and rolled it on my tongue and could not decide if I had ever seen it before. Wayworn. Wayworn. I Googled it and the definition is "wearied by travel", and while I guess that Cahalan's parents might have been "wayworn" from travelling into the city from their homes to sit at her hospital bedside, I wondered if she really meant "careworn" (her father was just coming from Brooklyn; would that make a person "wayworn"?), but decided to chalk it up the confusion to my own aging brain. But when Cahalan later describes herself as "obtuse" when I am certain she meant "obdurate", I decided right then that the writing wasn't of the highest level and my satisfaction began to drop from that point. I'm getting older but my brain still knows what I like; there's something missing here.
