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book review: brain on fire

Whenever I consume media based on true stories, I end up googling a lot to fill in the blanks (or to verify certain events). Wikipedia says that last year, Charlize Theron optioned Brain on Fire, to be made into a movie starring Dakota Fanning. It’ll be interesting to see how she manages to adapt this “memoir” to a more visual medium, given that the book is essentially a recollection (pieced together from other people’s recollections), and its strength lies in the insight you get from peering inside Susannah Cahalan’s head (as a journalist, she has a wonderful way with words). She refers to CCTV footage from her hospital stay, so if that could be worked into the film, it could be a very poignant and haunting production.

So here’s the thing – I am a huge fan of the TV show House. I love the whole patient-presents-with-seemingly-unassociated-symptomology-but-it-turns-out-to-be-all-related bit. Someone almost dies, some organs might need transplanting, much drama ensues amongst the hospital staff (usually unrelated to the case at hand), and it all is tied up in a neat little bundle at the end.

But it’s a whole other thing when you’re reading the story of how this happens in real life. Brain on Fire is the story of Susannah Cahalan, a NY Post journalist who descends into a bizarre illness that takes a month, lots of tests, and half a dozen doctors to figure out. Due to her age and initial presentation, it might seem that she has had a psychotic break or otherwise is suffering from a mental illness. But with a few other symptoms (particularly seizures), her medical team and family persist in identifying the illness (essentially an inflamed brain) and treating it.

The book is less about the progress of the disease or its diagnosis, and more about the human element. Cahalan essentially lost a month of her life – a huge gap in her memory that she painfully reconstructs as if she were investigating a story for her paper. This results in lots of interviews with the medical staff as well as her family and friends, who are arguably suffering as much as she is. With the video footage from the hospital, she’s able to see what she was like during that time; with her dad’s journals, she was able to see how her condition deteriorated and how that affected loved ones; and with the medical records, she was able to see not only how her symptoms progressed but how they were able to finally identify her illness.

So, spoiler alert (not really, as this isn’t a mystery book): the disease is called anti-NMDA receptor encephalitis. It is extremely rare, and just three years prior to her affliction, it was fairly unknown as a singular entity. It is essentially an autoimmune disorder- an inflammation of the brain caused by the body’s immune system attacking NMDA receptors in the brain. NMDA and its receptors are involved in the process of memory formation, so Cahalan’s loss of memory is characteristic. She suffers other symptoms as well, both psychiatric and physical.

But book is really about what it is like to live through this experience, and how one goes about filling in missing pieces. The journals are useful because, after the fact, it is of course easy enough to revise thoughts and emotions from that time period. Cahalan reflects significantly on the experience of her loved ones, as well as how those relationships change. But I think the most striking part is her own self-reflection during her recovery: how it feels to return to the hospital, be in public again, be reassessed for cognitive functioning, display flashes of her “old self”. That last part I think is the bit that sticks with you afterward (especially when you consider how the book was written by her “recovered self”) – those moments of lucidity being blocked by a “broken brain” or “broken body”. Her personally is there, intact, and struggling to get out, and the betrayal of her body is poignant and hard to bear witness to.

I found myself reflecting a lot on how much we don’t know about the brain and its functioning. And in fact, it’s usually only when things go wrong (and we can pinpoint where in the brain they go wrong) that we can learn about what the various parts of the brain do. I thought too about how little we know about how the phenomena of thought, emotion, and memory arise, particularly from what is essentially a system of electrical impulses and stop-and-go chemical reactions. How does it all work in such complex and fragile ways? The juxtaposition of Cahalan’s inability to form simple memories (such as drawing an image she was just shown) with her ability to make advanced leaps of logic highlights the wonderful and mysterious workings of the brain. With each of these cases (she mentions a few in the book, which of course, prompted another round of googling), we’ve inadvertently learned a little bit more, but still have a ways to go.

Overall, I’d highly recommend this book. It’s a fast read and very engaging. I hope that, when its translated to film, they can accurately capture the pre- and post-experience, particularly the changes to Cahalan’s personality and cognitive functioning, without just turning it into another feelgood “overcoming obstacles” type of story.

(note: this book is one of a list I’m planning on reading by end of June)

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