Thoughts on ‘Brain on Fire’

If you’re asked to define yourself, coming up with a working answer might take a few minutes. But you would have some things spring to mind, whether it’s boy or girl, native of certain country, hobbyist in something near and dear. You’d have to weigh which aspects of yourself are “you” and which are the result of outside factors. The definition could be given quickly and glibly, or it could be given with thought and consideration. But either way, most people could give an answer. The concept of self comes as naturally to most of us as breathing.

Brain on Fire takes an unsparing look at what it’s like to have that selfhood ripped away.

For 24-year-old New York Post reporter Susannah Cahalan, what began as an obsession with bedbugs developed into paranoia, hallucinations, seizures, and near-catatonia. Despite rapid physical and mental deterioration, almost every lab test and procedure she underwent returned negative results. It was not until Dr. Souhel Najjar, a neurologist with success in dealing with mysterious medical cases, had her draw a clock that Susannah and her family got the first indication of what might be affecting her. The eventual answer – anti-NMDA-receptor encephalitis – was a diagnosis miles away from the possibilities suggested by Susannah’s previous doctors. The disease itself uprooted her life. She lost an entire month of her memory and what little she could recall was hazy, fragmented and unreliable.

This book takes the undisputed prize for being the most terrifying thing I have ever read.

Brain on Fire showcases how treacherous the brain can be. The origins of the disease Susannah contracted are a mystery, and the parts of the body at play in the disease itself are receptors that are crucial to brain chemistry and essential for behavior, learning, and memory. As she puts it in the book:

If these are incapacitated, mind and body fail… All neurotransmitters carry only one of two messages: they can either “excite” a cell, encouraging it to fire an electrical impulse, or “inhibit” a cell, which hinders it from firing. These simple conversations between neurons are at the root of everything we do, from sipping a glass of wine to writing a newspaper lead… These receptor-seeking antibodies planted their death kiss on the surface of a neuron, handicapping the neuron’s receptors, making them unable to send and receive those important chemical signals.

As if having her brain come under attack by her immune system wasn’t nightmarish enough, the other horrifying aspect comes in the form of the medical proceedings that led up to this experience and diagnosis. When Susannah first began to experience her symptoms, which included wild mood swings, erratic behavior, and seizures, this is what the first doctor she saw told her mother:

I think this is very simple. Plain and simple. She’s partying too hard, not sleeping enough, and working too hard. Make sure she doesn’t drink and takes the Keppra I prescribed, and everything should be fine.

This is a chilling passage to read, given that pages before, Susannah had described having one clear seizure and another episode that was likely a smaller one. But it’s understandable enough in the circumstances, given that Susannah herself had fixated on having a bipolar disorder at that time and that she mentioned drinking when the doctor asked about it despite not having had alcohol in the previous week. That in and of itself is terrifying, because if the symptoms of this encephalitis – something that could have killed her – could be mistaken for alcohol withdrawal by an expert in the field, it has to make you wonder about the expertise of the people in whose hands this case would lie.

What happens to her afterward doesn’t do much to calm that worry – not so much because of incompetence on the part of the people caring for her as the fact that the reality of what was happening to her wore a mask of something complete different. There is simply no escaping the fact that she got lucky. If she had not gotten lucky in her doctors, in the timing of research on the disease and the setting of tests that would be able to diagnose her, and in the fact that her family had the means to help pay for the costs of all this (a staggering $1 million), her outcome would have been horrifically different.

But the question that rings throughout the book is the question of self. How can you define it when it’s been stripped away bit by bit? Cahalan’s writing here is particularly fascinating, because there’s immediacy to what she can remember and her description of the events that led up to her final seizure just before her loss of a month of memory. She expresses embarrassment at her erratic behavior, regret for things she says or does, and recalls with eerie clarity what it felt like to go from shouting in anger at her desk one minute to utter euphoria in the next.

But after she undergoes a seizure in New York University Lagone Medical Center, a month of her memory is gone, and the writing of the book changes drastically as a result. While Cahalan still makes use of the first person describing her stay, there’s a clinical element to it, a detachment and a diction reminiscent of the way she sketched out the characters of other people in the events she could recall. It’s clear that for Cahalan in the present, the “I” in Part 2, in which she is in the hospital and her diagnosis is awaited, is a different person of sorts. She writes:

… there are 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 question of accessing is one that she struggles with after she begins to recover. Her speech, her quickness of response, and her ability to communicate in general were significantly affected by the disease. Little everyday things such as answering questions, showering, zipping up a hoodie – they are all almost impossible for her, and it’s made harder still by the fact that she is on some level aware that she’s deteriorated. And the question she wrestles with is whether the self she was before would ever return.

Of course, it’s hard to pinpoint something like that. How can you say for sure that just because the instrument of expression is flawed, the essence, the soul isn’t there? The trouble is that afterward, the instrument – the body – is all we have by which to measure something like that, and when the instrument is broken and in repair, the readings of the self, as it were, are much harder to decipher. What’s the reality of something you can’t recall- or, more unnervingly, something you can recall but then discover with a certainty could never have happened? Cahalan has to grapple with both, and it’s clear as the book ends that she is still grappling with both, in ways that are still unfolding. Hallucinations have more immediacy for her than reality with regard to her hospital stay and the events leading up to it. Meanwhile, she has no memory of moments she regards as defining in her illness, such her meeting Dr. Najjar for the first time. Her recovery is painful and tangled and doesn’t feel quite complete by the end, because this is not fiction, and there is not necessarily a climax complete with closure for the main character. She has defining moments, but she also has to continue, and in real life, this will follow her wherever she goes.

The writing of this book is gripping, both in terms of prose and in terms of pacing. Cahalan does a great job mixing the medical history and terms in where relevant, and her descriptions are quick and sharp, whether they’re of people or places. The descriptions of those around her, particularly her family, are a vivid portrait of equal parts love and dysfunction that is touching and frustrating. There’s almost too many passages to pick, but her description of the New York Post newsroom is one of my favorites:

The walls are freckled with clocks that don’t run, dead flowers hung upside down to dry, a picture of a monkey riding a border collie, and a big foam Six Flags finger, all memorabilia from reporters’ assignments. The PCs are ancient, the copy machines the size of small ponies.

There’s a lot to take away from this book, whether it’s the unnervingly fragile nature of the mind, the chanciness and uncertainty that can exist with regard to medicine and diagnosis, or the difficulty of recovery. Communication runs through as a prominent theme; Susannah quotes from journals she tried to keep as her mind unraveled, her divorced parents – still struggling to be in a room together even as their daughter is unraveling in front of their eyes – journal to communicate developments, and Susannah starts keeping a diary as she recovers. It’s a powerful testament to how crucial words can be.

It also made me consider an incident with my own life. One of the defining moments came in the form my family moving across several states when I was eleven; we first got the news of the possibility of moving when I was nine or ten. The first thing I think of when recalling this is the phrase “There is a possibility – just a possibility, mind you – that we will move to Pennsylvania also.”

When I first reached for this memory, I found this phrase, and it came with a clear image of my mother telling me and my siblings this news in our living room, with all of us sitting on a couch in front of our nonworking fireplace.

But on further consideration, I realized that phrase hadn’t been said at all in the conversation my mother had with us. It was a phrase I had written in my journal afterward when I described the conversation there.

As William F. Allman wrote and Susannah Cahalan quoted: “The brain is a monstrous, beautiful mess.”

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6 thoughts on “Thoughts on ‘Brain on Fire’

    • Indeed. And really the best the book can do is show what the lead up was like- it’s hard to describe what you don’t remember.

      Haha, here’s hoping! Work is busy as hell, but my fingers are crossed this is indeed for real.

  1. Wow, this book sounds so interesting. It’s amazing that, even now, when we have learnt so much about the body and computers that conditions like this are easily missed or cannot be explained by doctors as to why they occur sometimes. It’s amazing how such small damage to the brain can change a person as well, one hit in the wrong place and your personality changes, or you lose your memory, or suddenly sound foreign when you aren’t. Simple, everyday processes we don’t even think about can be changed in an instant.

    Your comments about the soul reminded me of a lecture I had, where we were discussions psychologists views on the soul and how while some think it exists, others consider it an epiphenomenon – an unforeseen side effect of the connections in our brain that don’t necessarily have any purpose, but make us who we are. Weird, huh?

    • You might really enjoy it, i think, especially with your being into psychology. It’s a much easier read than I expected, given the subject matter, and the writing is just really good. And yes, there is so much about the brain that we just don’t get and it’s amazing when you consider how it’s the heart of pretty much everything we do and everything that makes us “us.” It’s especially unnerving when you realize it’s not just traumas like concussions that can bring this about- the body can be working against us without us even knowing. And one thing I didn’t even get to mention when I was going through the review (it was getting so long that I just couldn’t find a way to work it in) was this study here: http://io9.com/scientists-discover-a-new-link-between-the-brain-and-th-1710560159 which may throw certain things in the book into a whole new light, given that the book came out in 2012. Of course I couldn’t even begin to parse the whys and hows, despite my interest in the brain to the point of doing a senior high school project on schizophrenia, but I have to admit a large part of me wonders how much we assume are mental illnesses such as that one might stem from something more physical, albeit on a cellular level.

      And oh man, that thought makes my head hurt. It’s interesting! Just- ow. The implications. How that would work. I can feel a headache coming on already… (and maybe a story idea or three…)

      • Yeah definitely, I’m always interested in this kind of thing because of my interest in psychology, it always interconnects! And it does make such a difference when it’s well written. If you liked this, and you’re on a non-fiction kick, you may also be interested in Quiet by Susan Cain (on introversion) which I reviewed on my blog if you’re interested and Zero Degrees of Empathy by Simon Baron-Cohen – they’re the best psychology/human nature type books I’ve read (that are also accessible without too much jargon and are incredibly well written)! There not based entirely on case studies, but there are case studies in them.

        Ohh man, I always find cell stuff confusing. I’m good at the psychology side but I was never the best at the biology/chemistry stuff! But yes, it’s highly likely that mental illnesses are linked to cells. We have an incredibly good knowledge on mental health and the genetic and environmental sources now, but it’s clear we don’t know everything because we don’t know how to ‘cure’ it, which means we’re clearly lacking full understanding. Who knows what we’ll discover in the next 10 years?

        Haha! It made mine hurt too, but it actually made a lot of sense. We did a whole lecture on whether free will exists too, and there are all these studies that show that we move before we’ve constantly made the decision to move – which is a bit freaky!

        • I will definitely have to check out those books- I don’t know that I’d say I’m on a nonfiction kick, but I’m trying to broaden my reading horizons a bit (and yet stayed up til well past any sane hour for the past couple days reading a sci-fi novel; I clearly have some work to do).

          I honestly find any science-related stuff utterly head-spinning, cell biology included, but I did really like studying human anatomy and the brain when I was in high school. It did help I had a really good teacher for it- the brain and nervous system were really interesting to me, but I couldn’t remember a damn thing about them now if you quizzed me.

          Ah, that is kind of terrifying- but also really neat. It raises a lot of questions about things like thought, especially when it comes to actively choosing to think about something as opposed to fleeting thoughts coming into your head. And that’s not even touching the implications for actual physical action! Man, I really wish I had been better at science to dig into those a bit more.

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