Susannah takes great care to situate her battle with her disease (anti-NMDA receptor autoimmune encephalitis) in a historical context, in part because the history of the disease is so recent. Until 2007, her condition hadn't been identified and was often either diagnosed as unspecified psychosis or unspecified encephalitis (inflammation of the brain), depending on where a patient first sought help. As she recovers and learns more about her disease, Susannah feels a responsibility to share her story so that other people suffering from the same disease can get the diagnosis and the care they need to recover. By situating her personal experience within the larger framework of the US medical system, Susannah seeks to explore how her story might be able to help others and effect positive change in the medical world.
For the first half of the memoir, Susannah explores how the medical system failed her. When her gynecologist fears that her symptoms are neurological in nature, he refers her to Dr. Bailey, a well-known neurologist in New York. However, despite Dr. Bailey's acclaim, he's utterly ineffective at either diagnosing Susannah himself or referring her to someone who can. First, he tells Susannah that she's overtired and partying too hard, which makes Susannah question whether there's anything wrong with her. This further delays her diagnosis and makes Susannah second-guess her own intuition and self-knowledge. Even worse, Dr. Bailey's notes actually make it harder for other medical professionals to take her symptoms seriously because he overemphasizes her drinking habits. Susannah later learns that while it's common for doctors to double a patient's reported alcohol consumption because patients usually under-report their consumption, Dr. Bailey turns Susannah's reported two glasses of wine per night into two bottles per night by the time Susannah ends up in the hospital at NYU. Susannah's experience with a psychiatrist is similarly unhelpful. Her psychiatrist believes that she's experiencing a "mixed episode," or both manic and depressive symptoms. Though Susannah is certainly experiencing psychotic symptoms, her problems aren't simply mental health issues, and in retrospect, it's a good thing when she begins having seizures. Though they aren't taken seriously by the ER staff, the presence of seizures makes it abundantly clear to Susannah's parents and to Stephen that there's something more wrong with her than too much partying or a mental health crisis. However, the medical world's unwillingness to take Susannah's concerns seriously, coupled with a tragic lack of information about her disease, makes it so that she's dangerously close to death—or serious permanent damage—before anyone is able to make a diagnosis.
When Susannah becomes well enough to begin researching for her New York Post article about her experience, she's struck by the fact that she was only the 217th person in the world to be officially diagnosed with the disease, even though doctors believe that the disease has been around as long as humanity has. This makes Susannah afraid that many other people suffer from the same misdiagnoses due to a lack of information and a lack of communication between mental health and physical health professionals. Susannah felt compelled to share her story with the hope of helping patients advocate for themselves and to raise awareness of the disease in the medical community, so that others might not suffer and die from an often-treatable illness. She describes several instances in the memoir that suggest she was successful in this endeavor. A college student named Emily spent months slowly becoming sicker and sicker until her parents gave one of Emily's doctors a copy of Susannah's New York Post article. Susannah also mentions several Facebook groups that people started to continue her project of raising awareness, and she says that her disease is now included in initial autoimmune testing panels (whereas it wasn't included in the initial tests performed on Susannah). Susannah also describes some of Dr. Najjar's research that seeks to bridge the gap between neurology and psychiatry, and to look at what are considered "mental health issues" as holistic issues that affect the entire body, not just the mind.
Despite these successes, Susannah also mentions that when she contacted Dr. Bailey to ask him about anti-NMDA receptor autoimmune encephalitis, he hadn't even heard of it. Dr. Bailey's stellar reputation makes this hard to believe, though Susannah sees it as being indicative of a medical system that's not designed to facilitate true caring and curiosity on the part of medical practitioners—when doctors only have a few minutes to spend with each patient and must see several dozen per day, it's easier to understand why Dr. Bailey looked at Susannah's clean lab results and insisted that nothing was wrong. In this way, the memoir stands as a testament to the need for some patients to circumvent the medical system and demand better care, and for the medical system itself to improve and change. However, Susannah also offers evidence that her memoir and article did effect some change in the medical community: two years after Dr. Bailey misdiagnosed Susannah, she meets with an anti-NMDA receptor autoimmune encephalitis patient at NYU who was referred there by Dr. Bailey. By sharing this, Susannah suggests that the medical community is capable of changing to better serve patients, as it did in some small way because she and her family spoke up and continue to speak up about the disease she suffered.
Responsibility and the Medical System ThemeTracker
Responsibility and the Medical System Quotes in Brain on Fire: My Month of Madness
"Her EEG was completely normal," Bailey protested, looking through my file. "MRI normal, exam normal, blood work normal. It's all normal."
"Well, she's not normal," my mom snapped as I sat there, quiet and polite with my hands folded in my lap. She and Allen had made a pact that they would not leave Dr. Bailey's office without getting me admitted to a hospital.
Morrison wrote down "tenacious in her attempts." I seemed to realize I wasn't getting it right, which frustrated me deeply. It was clear that, for all my other impairments, I knew that I was not functioning at the level I was used to.
The raw panic makes me uncomfortable, but the thing that truly unsettles me is the realization that emotions I once felt so profoundly, so viscerally, have now completely vanished. This petrified person is as foreign to me as a stranger, and it's impossible for me to imagine what it must have been like to be her. Without this electronic evidence, I could never have imagined myself capable of such madness and misery.
Buoyed by this new ability to explain, I began to research the disease in earnest and became obsessed with understanding how our bodies are capable of such underhanded betrayal. I found, to my frustration, that there's more we don't know about the disease than we do know.
"He's talking about my brain," I whispered, although I didn't understand then what these slides portrayed. All I knew was that a very intimate part of myself was on display in front of a hundred strangers. How many people can say that they've allowed others to literally see inside their heads?
What I was almost immediately drawn to is perhaps the biggest mystery: How many people throughout history suffered from my disease and others like it but went untreated?
Evil. To the untrained eye, anti-NMDA-receptor autoimmune encephalitis can certainly appear malevolent. Afflicted sons and daughters suddenly become possessed, demonic, like creatures out of our most appalling nightmares.
But this is all the more reason that psychiatrists and neurologists are finding ways to break down the barriers set in place between psychology and neurology, urging for one uniform look at mental illness as the neurochemical diseases that they are...
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... 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.
The girl in the video is a reminder about how fragile our hold on sanity and health is and how much we are at the utter whim of our Brutus bodies, which will inevitably, one day, turn on us for good. I am a prisoner, as we all are. And with that realization comes an aching sense of vulnerability.
The friends and relatives I interviewed would never have used the term skittish to describe me, but every now and then, when I'm on the subway and the colors seem brighter than normal, I think, Is it the lighting, or am I going crazy again?
Psychology professor Dr. Henry Roedigger calls what happened with the FLIGHT RISK band a form of social contagion: if one person remembers incorrectly and shares this with others, it can spread...
Did I harbor this false memory? Was I the one who spread it? I am sure I remember vividly seeing the words FLIGHT RISK on my arm. Or am I?