Embarrassingly, I made it most of the way through a PhD in neuroscience without knowing the difference between a syndrome and a disease. In general, I knew I didn’t want either. But my own research focused on how the brain works, not they myriad ways in which it sometimes doesn’t. Then, in my last semester, I helped teach a class on human neuropsychology. In this class, I learned right along with my students the horrors of traumatic brain injuries, tumors, strokes, and neurodegenerative diseases. When I could, I went to watch the professor examine patients at the veterans’ hospital. He would scrutinize their brain scans in front of a room full of interns and doctors before bringing the patient in and asking all sorts of invasive questions. He would then have them do an elaborately choreographed series of stupid human tricks, each designed to ferret out the root causes of their deficits. In teaching the course, we watched a lot of videos of patients, too textbook in their problems to seem real. But nothing, and I mean nothing, is realer than a veterans’ hospital.
While teaching this class I became, for the first time ever, mistrustful of this lump of tissue inside my head that had always seemed so marvelous. In fact, it now seemed like it could turn on me at any moment. I became a bit of a neurohypochondriac. Which is why, when a labmate who had previously taught this same course suggested I read Susannah Cahalan’s Brain on Fire, I held off for a while. The cover photo shows Cahalan with an unsettling million-mile stare, a stark contrast from the author photo on the back. Whatever was going on inside her head, I didn’t want to know about it.
A syndrome is a set of symptoms, while a disease is what causes the symptoms. It’s easy, given a textbook full of conditions with a neat correspondence between the two, to forget that there are plenty of syndromes with no explanation. Cahalan’s book chronicles her terrifying battle with a rare disease, the identity of which I resisted spoilers with the fervor of your average Game of Thrones fan. No matter. It was nothing I’d heard of. Neither had her doctors, unfortunately.
Cahalan plumbs the depths of the despair that can exist between syndrome and diagnosis, recounting in excruciatingly vivid detail the sense of helplessness that comes with unexplained problems. Each new piece of medical evidence that she reveals brings either frustration or relief. The biggest relief of all comes, oddly enough, from simply naming a problem. In giving a name to a symptom or finding, doctors validate their patients’ struggle and, at times, dangle a nebulous promise of reliefheartbreakingly just out of reach.
Remarkably, Cahalan remembers almost nothing of her “month of madness,” setting her book apart from the typical memoir format. Instead of digging deep into her own nonexistent memories, Cahalan, a reporter, interviews her doctors, co-workers, and family members. She manages to piece together bits of the story from medical records, surveillance video, and notebooks kept by family members while at the hospital. The result is a surprisingly coherent narrative, woven with a sense of creative license that is at once artful and practical.
As I read, I recalled my reaction to the movie Titanic. How many of us, watching the water rise upon Rose and Jack, feared for their lives even though we had seen an aged Rose in the movie’s opening scene? Similarly, I kept becoming gripped by the insane devastation of her illness, having to remind myself that she eventually regained enough function to write the book. I played detective as her lip-smacking became more prominent, applying my small catalogue of neuropsychological trivia to guess at problems in the temporal lobe similar to Kluver-Bucy syndrome. I checked off various criteria for seizure types like squares on a Bingo card. When she was given steroids like prednisone for inflammation, I tried to guess at what effect it might have.
I felt silly, trying to put it all together when I knew the odds were against me. Silly enough that I tried to stop myself from doing it. And it was then that she met her new doctor, the one whose face the book shows alongside a smiling, recovered Cahalan in a photo bearing the caption “the man who saved her life.” At a critical juncture of the book, he administers a test that gives a useful clue (albeit more immediately useful for characterizing her syndrome than for diagnosing her disease). This test produces a result so strange, so firmly associated in my memory with the types of exotic cases described by Oliver Sacks in The Man Who Mistook His Wife For A Hat, that I had all but written off the odds of ever seeing it in the wild. I have discouraged students from letting their fascination with the oddity of this result convince them that all medical practice will be just as thrilling. So I almost threw the book across the room when Cahalan’s brain yielded such a meaty clue in response to a simple paper-and-pencil test.
For all of this chasing down of clues, though, playing neuropsychologist is fairly low on my list of reasons for loving this book. Like Sacks before her in A Leg To Stand On, Cahalan writes beautifully and insightfully about the impact her own medical misfortune has on her life. I felt the floor fall out beneath me when she pointed out that if she had become ill a mere three years earlier, there would have been zero people on earth able to pinpoint her condition (as opposed to a lucky one or two). I felt like I had been punched in the gut when she described how the illness transformed her relationship with her father from “maybe a visit once every six months” to making others feel left out of their wordless communication, exchanging meaningful looks across the table. My eyes grew wide and my heart grew three sizes when she let go of resentments, coming to understand that her mother’s optimism about her condition was not an unsympathetic insinuation that she was a burden.
More than anything, I was left with a sense of the enormous obstacles that people face when doctors are pressed for time. These obstacles to medical care can be isolating, shaming, frustrating, or deadly. Doctor after doctor turned Cahalan’s medical history into a dangerous game of telephone, latching onto her sleep, work, and drinking habits and twisting them into probable causes. In our class on human neuropsychology, my students and I learned how to tell if a patient is faking a seizure: you have another doctor run in, saying “I’ve seen this kind of seizure before! It always stops when you press on the great nerve of the neck!” As it turns out, there is no such thing as the great nerve of the neck. Just like how a few years ago, there no such thing as the disease Cahalan certainly wasn’t faking–instead, people were believed to be “possessed” or simply crazy. It seems like a lot of doctors are simply forced to press on the great nerve of the neck and send the patient home. Given how little we know about the brain and its problems, it seems like we can hardly afford to keep up with a system that doesn’t allow most doctors the time to consider subtler alternatives. Cahalan’s amazing recovery shows what previously unfathomable odds patients might be able to beat if only their doctor has the time to take even the baffling cases seriously. Dismissing Cahalan’s symptoms, pressing on the great nerve of the neck, and calling it a day would have resulted in her friends and family losing her forever.