Brain On Fire

“That was the last straw. Swiftly, I unbuckled my seat belt, yanked open the car door, and prepared to jump out of the car headfirst. Stephen grabbed the back of my shirt mid-leap, saving me from launching myself out of the vehicle.” 

Cahalan recalls one of her delusional thoughts with clarity with this quote. At the time she has this thought, she is in a car with members of her family and her boyfriend on the way to Dr. Bailey’s office. Cahalan recalls how she threw a tantrum and had to be coaxed into the car for a procedure she needed. Cahalan suffers from several intense and debilitating symptoms for quite some time, without really letting on to her family and boyfriend. Her coworkers and support network barely register that something is wrong with her, in part because Cahalan does an exceptional job of hiding her problems and pretending to be normal. In this moment, her parents, stepparents, and boyfriend are all present for a stunning sign that Cahalan is unwell and a risk to herself and others.

“My father doesn’t remember what happened either, although it’s more likely that he has consciously chosen to forget. I do know that I said something terrible to him—something so awful that it made my father cry, the first time I had ever seen him cry in my life.” 

Cahalan’s father is the only person not mentioned directly by name in the text. She describes him as stoic, often perceived as taller and more physically intimidating than he actually is by strangers and family. Her father is wealthy, retired, literate, and proud of his heritage as an American, a prominent example of this being the massive “war room” in his lavish, Brooklyn Heights brownstone, complete with high-end, authentic relics from every American war. Cahalan explains how her relationship with him has always been strained and that they had grown more distant since her parents’ divorce.

“I wish I could understand my behaviors and motivations during this time, but there was no rational consciousness operating, nothing I could access anymore, then or now.” 

Cahalan uses writing as a means to understand herself and describe her process of understanding both her illness and recovery. This statement reflects a sentiment alluded to in the early chapters of the book and is amplified more so in the latter third—longing and aching to understand that which is incomprehensible, but that which is also wholly familiar: herself.

“On a scale from 1 (most dire cases) to 100 (no symptoms), I received a score of 45, which translated to ‘serious symptoms.’” 

Throughout the process of her treatment, Cahalan endures many examinations and tests, all of which either concluded that she was completely “normal,” or which rendered inconclusive results. At this stage of her treatment, she is finally having examinations that shed light onto her condition, contextualizing her symptoms more accurately. This passage alludes to one of the first tests that revealed with greater accuracy that something was indeed very wrong with her. There were many doctors, including her primary care provider, Dr. Bailey, who did not believe this. This is an early revelation that ultimately leads to the epiphany that saves her life.

“My tongue twisted when I spoke; I drooled and, when I was tired, let my tongue hang out of the side of my mouth like an overheated dog; I spoke in garbled sentences; I coughed when I drank liquids, which required that I drink water out of a cup that dispensed only a tablespoon of liquid at a time; I also stopped speaking in full sentences, moving from unintelligible ramblings to monosyllables and sometimes just grunts.”

This passage marks a frightening moment in Cahalan’s illness. For much of her illness, Cahalan hallucinated and suffered from paranoid delusions, but it was at this stage, when she lost motor control, muscle control, and developed types of aphasia, that her support system and team of doctors truly wondered if she had a chance of recovery at all. It also marks a transition in her illness that baffled the team assigned to her; they already had no idea what was wrong, but this change in her made her illness all the more enigmatic and elusive to them.

“But autoantibodies, which everyone has in healthy doses, can sometimes transform into the most malicious type of biological shadowboxer, if they begin to attach to and destroy the healthy host tissue, like the brain.” 

Autoimmune diseases are diseases in which elements of the body’s defense system turns on the host (body) and launch attacks with the same fury, upon the indigenous tissue, as they would (and normally should) on foreign pathogens. It is a reminder to the reader that there are parts of our bodies that fight wars for us and when those same elements experience a “glitch” of sorts, that power to defend can transform into a sort of double agent. Throughout her diagnosis and treatment, Cahalan and her family had somewhat hoped that her condition was caused by something external. Learning that her condition was caused by something internal was at once both devastating and relieving.

“Dr. Najjar always stressed the importance of getting a full health history from his patients. (‘You have to look backward to see the future,’ he often said to his residents.) As my parents spoke, he took note of symptoms—headaches, bedbug scare, flulike symptoms, numbness, and the increased heart rate—that the other doctors had not explored, at least not in one full picture. He jotted these all down as key findings. And then he did something none of the other doctors had done: Dr. Najjar redirected his attention and spoke directly to me, as if I was his friend instead of his patient.” 

This quotation explains how Dr. Najjar was different from the other doctors via his simplicity. The language he used was simple, and the methods he employed were simple. His tests were deceptively simple, and his approach to the Cahalan family was deceptively plain. It was these simple differences that directly contributed to Najjar extracting the vital information that allowed him to create a broad, in-depth picture of Cahalan’s health history, which in turn led to his epiphany that saved her life.

“‘Her brain is on fire,’ he repeated. They nodded, eyes wide. ‘Her brain is under attack by her own body.’” 

Once Dr. Najjar pinpoints Cahalan’s condition, these are the words he uses with her family to describe, in layman’s terms, her condition. For so long, her family had prayed, an activity in which they did not participate often, for a name for her condition, some concrete direction in which they could go to help.

“If it took so long for one of the best hospitals in the world to get to this step, how many other people were going untreated, diagnosed with a mental illness or condemned to a life in a nursing home or a psychiatric ward?” 

Cahalan truly wants to help others as part of her journey to discover and understand what happened to her, and who she was during her illness. During the last third of the text, especially during the stages of her recovery, Cahalan poses a number of philosophical quandaries and hypotheticals to herself and the reader. She becomes more concerned about the welfare of others the more she investigates the nature of autoimmune diseases and treatments for them. Over the course of her investigation, she learns about the plethora of examples of patients who were misdiagnosed and mistreated, often brutally, at the hands of their respective healthcare systems because of lack of knowledge about autoimmune diseases.

“Now that we had a diagnosis that had never before been seen at NYU, young MDs, hardly a day older than me, stared at me as if I were a caged animal in a zoo and made muffled assessments, pointing at me and craning their heads as more experienced doctors gave a rundown of the syndrome.” 

Here, Cahalan writes of the downside of having a proper diagnosis. There are clearly a number of issues that she and her immediate support system face during her treatment and recovery, directly related to her symptoms. Yet, they do not account for the social prejudice, bigotry, and ignorance they face from colleagues, family, friends, and strangers regarding Cahalan’s condition. Although she comes from an affluent, Anglo-American family, her privilege does not save her from public humiliation on multiple occasions.

“As I wobbled up the steps and through the doorway on Stephen’s arm, it seemed as if I had both aged fifty years and lost fifteen, a grotesque hybrid of an elderly woman without her cane and a toddler learning to walk.” 

Cahalan is describing the first time her younger brother, James, is seeing her since her illness began. Her family has worked very hard to keep the true nature of Cahalan’s illness secret from James for as long as possible. Because he was a freshman in college at the time, and because the siblings were exceptionally close, Cahalan’s parents thought James would drop out of college to help Cahalan if he knew about her condition. This description is both from her perspective and from James’ recounting of their first meeting.

“But I had my savior: Stephen. People called him the ‘Susannah whisperer,’ because he seemed to sense what was unspoken.” 

Stephen is Cahalan’s dedicated boyfriend who chooses to stand by her and essentially become a part of her family as a result of his involvement in supporting her through her illness. Before her illness became severe, they were on a path of developing healthy emotional and physical intimacy. Because of her illness, she and Stephen grew exceptionally close over a brief time, creating a bond that smooths Cahalan’s transition back into the world.

“Even though my brain was still repairing itself and it’s undoubtedly dangerous to mix alcohol with antipsychotics, I insisted on drinking. I didn’t care how self-destructive it might be—this was something tangible that connected me to the ‘normal’ Susannah. If the old Susannah had a glass of wine or two with dinner, so would this Susannah. I couldn’t read, could hardly make small talk, and couldn’t drive a car, but dammit, I was going to have a few glasses of champagne at a wedding.” 

Cahalan is at a fragile stage of her recovery, one to which she applies the adage, “fake it ‘til you make it.” She is at a family wedding and is weak. She is fighting for every inch of autonomy and connection to her older self. In this case, she perceives drinking socially as a means by which to be more independent.

“The worst part was that the struggle didn’t end once the hospital stay was over; now she had to live with this hostile stranger, her own daughter, who had once been one of her closest friends.” 

Up until her illness, Cahalan and her mother were inseparable. This quotation speaks to the damage that the illness has done to Cahalan’s base identity as it relates to her mother, her greatest ally.

“Yet the person I read about in my recovery diary is childlike and prosaic, unlike that umbral pre-hospital self who could, even at her most obscured, be eerily illuminating. Yet, there are surprising similarities between this diary and the journals I kept during junior high school. In each, there’s a stunning lack of insight and curiosity about myself.” 

Cahalan struggles a great deal to reconstruct the period in which her illness manifested as full-blown madness. She searches in the present and in the past in order to make sense of who she is during her recovery. She is struck by how items, not in her immediate past, but in her distant past, shed light onto who she became when her body attacked itself.

“I know now that I focused on my body because I didn’t want to face the cognitive issues, which were much more complex and upsetting than mere numbers on a scale.” 

This is a statement made after Cahalan is discharged from NYU and beginning her recovery. Despite everything she has experienced, she has yet to learn that facing her problems, most obviously the ones concerning her health, need to be dealt with head-on and not ignored.

“How many people throughout history suffered from my disease and others like it but went untreated?” 

This statement illustrates the strides Cahalan has made in cultivating her awareness and understanding of broader illness in society. As she explores what happened to her, she realizes her story is one of a tapestry of narratives and that in order to understand herself, she must learn and understand others. She experiences a series of epiphanies, including this one, that both scare her and make her grateful for her experience.

“It had cost $1 million to treat me, a number that boggles the mind.” 

Cahalan reflects on another aspect of her experience with madness, treatment, and recovery. Cahalan realizes how fortunate she is to come from a family that has the means to pay the expenses for her treatment and care. She reflects on how others with similar medical conditions to hers may not have received proper treatment, and may have lost their lives because they were unable to cover medical expenses.

“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. Baily 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.” 

Here, Cahalan discusses Dr. Bailey as personifying the larger problem with the American healthcare system. She understands his role as part of a system and sees the system from an insider perspective. While she does not blame Dr. Bailey, she does hold him accountable.

“Although anti-NMDA-receptor autoimmune encephalitis is rare, it is one of the more than one hundred different kinds of autoimmune diseases that afflict an estimated 50 million people in the United States, a staggering figure that was more than tripled in the past three decades. An alarming majority of autoimmune diseases—around 75 percent—occur in women, affecting us more than all types of cancer combined.”

Cahalan works hard to report facts without much opinion, as she does here, with a number of statistics about autoimmune diseases, and that they have the chance of affecting women’s health more than men’s.

“Overnight, every news outlet there covered the story of how a Syrian boy had become a miracle doctor in America. ‘Remember the dunce. The class dunce who couldn’t do the work,’ Marwa smiled.” 

This passage refers to Dr. Najjar, who, like Albert Einstein and others throughout history, was initially assessed as deficient, only to traverse obstacles that in their own time. It reflects how far Dr. Najjar has come in his own personal history, and how Cahalan’s illness has directly affected his personal and professional growth.

“Because they had almost had to mourn me, friends and family feel relatively comfortable speaking openly about their relationships with and impressions of me. Because of this I often felt like Tom Sawyer attending his own funeral; it’s a strange kind of gift.” 

This statement is made following another family wedding that occurred deeper into Cahalan’s recovery. She tries to relay to the reader the surreal experiences her illness provided to her, one type of which is people reminiscing about her as though she weren’t present to hear them.

“Those closest to me had undoubtedly changed as I did, if not even more so.” 

This statement reflects Cahalan’s recognition of the dedication and sheer effort put forth by her family and boyfriend to help her survive her ordeal. She is aware her own internal changes, and spends chapters describing them. As a demonstration of her personal growth and her perception of her connection to others, this statement shows that Cahalan knows that her illness did not affect her alone.