I started and finished Brain on Fire: My Month of Madness
Susannah Cahalan, a New York Post reporter, was suffering from a rare autoimmune disorder that caused inflammation on one side of her brain. A variety of expert neurologists and psychologists, however, confidently diagnosed her as (a) normal, (b) suffering the effects of heavy alcohol consumption (despite no evidence that she had been a heavy drinker), or (c) a garden-variety mentally ill person. These misdiagnoses cause delays in appropriate treatment that result in her condition deteriorating to the point that she was probably just a few days from dying.
First, you’ll feel better about your own life after reading this book, unless you are suffering from a tough-to-diagnose and extremely rare medical condition. Second, you’ll learn just how random are the outcomes in the American medical system when the patient does not fit into a common box. Probably tens of thousands of folks with Cahalan’s problem have wasted away in mental institutions and/or died due to improper treatment. Certainly plenty of doctors with big reputations and enormous reserves of self-confidence worked on Cahalan’s case and failed to get any closer to the source of her problem. What’s worse, the doctors she consulted did not do any follow-up to find out whether or not their apparently-not-so-educated guesses were right. A famous New York neurologist, Dr. Saul Bailey, whom Cahalan had seen early in her journey through the world of medicine, did not keep sufficient track of the case to learn that his initial diagnosis of alcoholism was wrong. Because of that, when Cahalan followed up with him in the course of researching the book she discovered that Bailey remained ignorant of the disorder that had nearly killed Cahalan, despite the fact that her particular case had at that point been in lots of medical journals as well as the New York Times. With no feedback, how will Bailey ever improve?
Third, if you’re a blood donor you’ll feel better about your donation (email me if you want to meet at the Children’s Hospital donation center here in Boston; I’ll buy you lunch afterward and lunch for anyone else that you bring). Cahalan went through a lot of bags of immunoglobulin infusions, each of which costs $20,000 and requires 1000 blood donations.
Separately, the book contains some interesting father-daughter and men-women relationship angles. After corresponding with hundreds of patients and relatives of patients who’d suffered from the same “anti-NMDA receptor autoimmune encephalitis”, Cahalan concludes that “Paranoia, esepcially about the men in their lives, was also a common thread. A middle-aged woman believed that her husband had fathered a baby with a neighbor; a young teenager was convinced that her dad was cheating on her mother.” Cahalan herself suffered from similar paranoia but subsequently learned that the men in her life had in fact stepped up to the challenge.
Reading between the lines it sounds as though Cahalan’s mother triumphed over Cahalan’s father in a divorce lawsuit approximately a decade before the illness. The mother ended up getting the fancy suburban NJ house, the kids, and the river of child support money that courts can assign to the parent who wins the kids. This had resulted in some distance between Cahalan and her father, who moved to Brooklyn. The illness brought her dad to his daughter’s side every day: “Sensing that attitudes toward me improved and the level of care [at the NYU hospital] rose when company arrived, my dad … started to arrive first thing every morning. Alone, I could not fight this battle.” Dad, a successful financial industry worker of some sort, learns to respect Cahalan’s musician boyfriend, who showed up at 7 pm every day to take the night shift. The father wrote in his journal, which Cahalan mined for the book, “The one friend who did come everyday was Stephen. He was terrific. I wasn’t that sold on him when I first met him, but he grew in my respect and regard with every day that passed.” In the same journal Cahalan discovered an entry in which her father prays that “God would take him instead of me.”
More: read the book