“Writing teaches us awareness. It teaches us to pay attention, to savor the moment. It’s like that great Henry James line — a writer is someone on whom nothing is lost. Writing teaches you to take yourself seriously and to take life seriously. Scribble down whatever blows your mind. Whether you went to India or whether you were in the express line at Safeway, this thing got your attention so you scribble it down. Then you read other people who are doing the same kind of stuff and you think ‘Yeah, that’s what I’m going for.’”

These are the words of Anne Lamott, one of my favorite writers, when she participated in a conversation with other TED leaders in NY in 2017. Of course, she’s right, especially the part about the other people writing the “same kind of stuff,” especially the part about taking life seriously, especially everything.

I’ve been reading as much carefully chosen, lyrical and narrative writing on medicine and health as I can stomach over the last year. How do these writers do it? How do they sustain a story that includes clinical information and ugly, scientific words, for the length of an entire book? Most importantly, how can I do this? I’ve written about several of these books in previous blog posts: Jill Bolte Taylor’s My Stroke of Insight and Gavin Francis’ Adventures in Human Being in one post; Seth Mnookin’s The Panic Virus and Henry Jay Przybylo’s Counting Backwards in another. I have more to say about others I’ve read, and I’ll do that in future posts, but I’ve decided to dedicate a full post to the book I read, breathless and all-at-once on a five hour flight.

I’m talking about the book that everyone told me to read, once they knew what I was writing. I’m talking about Susannah Cahalan’s Brain on Fire.

I fought the recommendations for a long time. I didn’t want to live, even temporarily, inside a mind wrecked by madness, inside a misunderstood disease that, in my personal circle, had affected friends and acquaintances through a variation known as PANDAS. However, as the book’s acclaim spread, and as I began to write my own book proposal, I knew that a recent bestseller on misdiagnosed illness was something I needed to read, if only for professional reasons.

In the end, however, this book lived up to its hype, and then some. Cahalan’s story of mysterious tics and obsessions, followed by sudden and full-blown psychosis, had the feel of medical mystery I am reaching for in my own story. Beyond that, her writing made me forget why I was reading it in the first place; instead of reading in a removed, detached way, I was sunk in, horrified for her and grateful that the fact of her writing meant that, somehow, she clawed her way out. The writing is intense without being overwrought; in fact, her own detachment (which stems from her inability to remember much of the worst moments, which she can write only because of interviews with her family and friends) makes it both bearable and, somehow, more poignant.

It was only in the last chapters, after the resolution of the worst of her symptoms, that I was able to pull myself, nearly panting, back out into my own intentions for reading. A few passages stuck out for me. Speaking of one of her first doctors, who misdiagnosed her:

“While he may be an excellent doctor in many respects, Dr. Bailey is also, in some ways, a perfect example of what is wrong with medicine. I was just a number to him (and if he saw thirty-five patients a day, as he told me, that means I was one of a very large number). He is a by-product of a defective system that forces neurologists to spend five minutes with X number of patients a day to maintain their bottom line. It’s a bad system. Dr. Bailey is not the exception to the rule. He is the rule.

“I’m the one who is an exception. I’m the one who is lucky. I did not slip through a system that is designed to miss cases just like my own – cases that require time and patience and individualized attention. Sure, when I talked to him, I was shocked that he knew nothing about the disease, but that wasn’t the really shocking part; I realize now that my survival, my recovery – my ability to write this book – is the shocking part.” (page 226)

Misdiagnosis is a problem in modern medicine for exactly the reasons she describes here. A recent Mayo Clinic study found that 21% of patients referred for more specialized care were misdiagnosed by the referring physician. In Cahalan’s case, this is exactly what happened, leaving her tortured and helpless in a hospital; in my daughter’s case, a brusque and busy doctor made a misdiagnosis and sent us on the wrong path for three years, unnecessarily subjecting her to more than a dozen unnecessary endoscopies under general anesthesia. Both of our families suffered from the same overwrought, quick-to-diagnose medical system.

When I think about what else makes Cahalan’s book such a good comparable text for my own, it is the constant presence of her parents at her side during her illness and recovery. They offer her not only support but a record of the experiences she can’t recall. I found myself wondering, throughout, what they were feeling. Did they have some of the same experiences I did, sitting in hospital rooms and waiting rooms and at kitchen counters, wondering and worrying and researching? How would they write their story?

I can’t answer those questions, but I do know that their story matters to me, just as the stories of all parents who watch their children suffer matter to me.

It’s why I’m writing mine.

by

by