Monday, 24 July 2017

Brain on Fire by Susannah Cahalan

Medical memoirs are a very certain genre. They demand someone with writing skills and the penchant to use them, but even more than that, they demand an illness that the author can recover from and look back upon, or something that takes long enough to progress that there is time to write. As such, they can be powerful looks at illness, mortality, suffering, and living, but I'm suddenly wary of positing them as universal experiences, because they are truly coming out of a very specific experience of illness and/or death.

Given that my parents both died very suddenly and quickly (we had less than two weeks knowing it was coming for my father, less than 48 hours for my mother, and for both of them, the vast majority of that time was spent unconscious and unresponsive. There was no time to collect thoughts, to meditate on sudden mortality, or grapple with the healthcare system. It was, and then it was over.)

This is not to say that people shouldn't write about their experiences of illness - it can be powerful both for the author and the reader. I'm just making an argument that we shouldn't universalize that as an expression of all illness, of all death. It captures a specific kind of experience, but one that is not necessarily reflective of all. It's just all that's ever likely to get published, for very obvious reasons.

Which brings me to Brain on Fire, which falls into "the author was lucky enough to survive" category. She, a New York Post reporter, spent a terrifying month that she doesn't remember, after an initial descent into hallucinations, paranoia, and aggressive behaviour, accompanied by seizures. The seizures were, weirdly, the lucky part, as it got her housed in an epilepsy ward instead of a psychiatric one, and under the attention of neurologists.

Still, it took one particular neurologist to diagnose her with an autoimmune encephalitis that had only been recently recognized as a thing - which, as Cahalan brings up, raises the question of how many psychiatric break diagnoses might be unrecognized autoimmune disorders similar to what she suffered.

This was the part I found most interesting - Cahalan and her parents both refer to this neurologist as her own Dr. House, in that he figured out an answer no one else could. But while it's plain in what she writes, less obviously explored are the ways in which her medical mystery was not solved by medical genius and irascibility and fundamental mistrust of patients - that seems to be have been the treatment she got from everyone who didn't figure out what she had. What set that neurologist apart was not only that he was familiar with the recent literature, but that he was the first one she ran into with good communication skills, who sat and took a full history, who listened instead of judging, who wasn't in a hurry and paid attention.

Yet we keep attributing good medical care to the genius figuring out the puzzle, when this book hinges upon much softer skills - good communication skills. As someone who has spent years helping teach communication skills to medical students, this made me nod my head fervently, and then be disappointed that we kept coming back to the Dr. House metaphor. Because communication skills really can be the difference between good medical care and poor medical care, between an experience that heals and one that adds to wounds. This can happen in ways small and big, and in Brain on Fire, it was in a very big way. So, while her talk of insurance for all is needed and timely, there's the role for communication skills that is present but not quite as much in the forefront of the book.

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