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Brain on Fire by Susannah Cahalan.
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At 24 years old, Susannah Cahalan is an ambitious, dedicated reporter for the New York Post. She’s admired by her colleagues and respected by her editors. Like most 24-year-olds, she thinks nothing can go wrong with her vibrant, happy life.

Uncharacteristic Behavior

During the height of the Manhattan bedbug scare in 2009, Susannah finds two red dots on her arm. She’s convinced her apartment is infested, even though an exterminator says otherwise. Susannah doesn’t know she’s suffering from Ekbom syndrome, an obsession with bugs that can signal the onset of psychosis.

At work the following day, Susannah is supposed to pitch story ideas for the Sunday edition of the Post. She usually comes with three well-developed pitches, but today, she’s completely forgotten about it. Her editors are furious.

That night, Susannah prepares for the exterminator by throwing out hundreds of clips she’d written over the past seven years. Like her obsession with bedbugs and her bad performance at work, throwing out her clips runs contrary to Susannah’s nature. She feels a terrible dread in the pit of her stomach. Her mind is pierced by a white-hot flash like a migraine. She stumbles to bed, convincing herself she has the flu.

A few days later, Susannah wakes up contentedly, alone in her boyfriend’s bed; Stephen’s a musician, and he’s already at rehearsal. They’ve only been dating a short time, but their relationship is trusting and comfortable. Suddenly Susannah is hit by another thought that’s completely out of character—an overwhelming compulsion to read his emails. She opens his computer and combs through his correspondence until she finds old messages from his ex. She digs through his dresser until she finds letters from ex-girlfriends.

Suddenly she sees herself in the mirror. The image disgusts her. She’s overcome by nausea and a migraine. Her left hand begins to tingle, then goes numb.

The tingling lasts for days, but Susannah is more worried by her uncharacteristic behavior than by her physical symptoms. She ignores the numbness until it moves down to her toes. She contacts her doctor, who refers her to Dr. Bailey, a famous neurologist.

Ineffectual Diagnoses

Bailey conducts a routine neurological exam and declares everything is normal. He prescribes an MRI, which comes back normal. Bailey suggests Susannah has a virus, possibly mono. She’s relieved to have a diagnosis.

Susannah returns to work. When she pitches two more stories and they’re both rejected, she blames her poor performance on mono and takes another day off. Her doctor calls to tell her she doesn’t have mono after all.

At work the next day, Susannah feels the walls caving in. Posters on the wall pulsate. She has another hallucination in Times Square the next day and is instantly hit by a migraine.

She stumbles into the office and tells her coworker Angela about her strange experience in Times Square. Angela suggests that Susannah see another doctor, and Susannah finally admits that something is happening to her but she doesn’t know what it is.

That night marks a turning point. Stephen cooks Susannah an elaborate meal, but she can’t eat it. Her thoughts run wild. She paces and chain-smokes. She’s consumed by the desire to escape. She tries watching a TV show, then everything goes hazy. Susannah has her first seizure.

The Seizures Take Over

Susannah awakes in the emergency room. After conducting a series of tests, the hospital discharges her over Stephen’s objections. The following morning her mom and stepfather bring her to their home in New Jersey. Settling in, Susannah tries to work on an article for the Post, but she’s unable to write. A psychiatrist in their circle suggests that Susannah has bipolar disorder and is having a manic episode. Once again, Susannah is thrilled to get a diagnosis, however dire it is.

Susannah has another hallucination and goes into a trance. Her mom schedules an appointment with Dr. Bailey for the following day. After doing another basic neurological exam, Bailey once again concludes that Susannah is “normal.” She tells him she’s bipolar, and he refers her to a psychiatrist. Then he tells Susannah’s mom that he believes Susannah’s just drinking and partying too much.

Susannah and her mom visit the psychiatrist recommended by Dr. Bailey. Susannah tells her she’s bipolar, and the psychiatrist concludes that Susannah is experiencing manic and depressive states. She prescribes a drug commonly used for mood and thought disorders.

That night Susannah has another seizure. Frantic, her mom schedules another EEG with Dr. Bailey, to take place in three days. Meanwhile, Susannah is getting worse by the hour. She smacks her lips together, trails off mid-sentence, and stares off into space. On the drive into New York City for her EEG, Susannah has a hallucination: Her stepfather speaks without moving his lips. She thinks he says, “You’re a slut and Stephen should know.” Enraged, she tries to throw herself out of the moving car.

Bailey conducts a rigorous EEG, but the technician tells Susannah nothing is wrong with her—it’s all in her head.

A Fast Downward Slide

Susannah returns to the city under her father’s care. All’s well at first, but her paranoia soon returns. “They’re kidnapping me!” Susannah screams, convinced she isn’t safe with her father.

At her dad’s place, Susannah has a number of hallucinations. She hears her stepmom saying, “You’re a spoiled brat,” even though her lips don’t move. A painting comes alive. Her childhood dollhouse is haunted. Her father is beating her stepmom.

Convinced her father is going to kill her, Susannah runs to the front door of the brownstone and bangs her fists against the door, screaming, “Let me out!” When she hears her father coming, she locks herself in the bathroom.

That night **Susannah’s parents agree that she must be admitted to a hospital, as long as it’s not a psych ward....

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Brain on Fire Summary Brain on Fire Guide Part One: Onset of the Disease

Preface

Everything’s dark. Susannah regains consciousness to find herself lying in a bed, bound to the bedrails by a straitjacket. “Help!” she shouts and shoves against the straps.

The “Purple Lady,” an attendant with a Jamaican accent, tells Susannah she’s in the hospital, then releases her from the straitjacket. Susannah’s hands fly to her head. It’s covered by rows of wires. Susannah lowers her hands and squints at an orange plastic band on her wrist. It says Flight Risk.

Uncharacteristic Behavior

At the height of the New York City bedbug scare in 2009, Susannah finds two red dots on her arm. She’s convinced she has bedbugs and demands that an exterminator schedule a costly spray, even though he finds no evidence of infestation.

Medical Aside

Obsession with bugs, called Ekbom syndrome, can signal the onset of psychosis. It’s frequently undiagnosed because people with the condition are more likely to consult exterminators than mental health providers.

Even though she thinks she might have bedbugs, Susannah goes to work the following day at the New York Post. Ever since she started her reporting job as a seventeen-year-old intern seven years earlier,...

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Brain on Fire Summary Brain on Fire Guide The Hallucinations Begin

En route to interview John Walsh at the Post the next day, Susannah feels the walls caving in, the posters contracting and expanding. Her perspective narrows, like she’s looking through a viewfinder. She tells herself to breathe and somehow makes it to the office where she’s to interview Walsh.

Walsh starts speaking, but Susannah can’t understand what he’s saying. Disassociated from his words, Susannah laughs uproariously at things that aren’t funny. Annoyed, Walsh’s publicist cuts the interview short.

Pressuring herself to appear competent, Susannah walks Walsh to the elevators. Unable to maintain her balance, she keeps bumping into the walls on the way.

The next day, Susannah has another hallucination on her way to work. The garish colors on the Times Square billboards make the hairs on her neck stand up. A scrolling banner makes her want to vomit. She’s instantly hit by a migraine.

She stumbles into work and tells Angela about her strange experience in Times Square. Frightened, Angela suggests that Susannah see another doctor.

Finally, Susannah acknowledges to herself that something is wrong with her. She bursts into uncontrollable tears and runs to...

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Shortform Exercise: Assessing Motivations

People in medical distress are often happier to get a dire diagnosis than to not get one at all. For instance, Susannah is thrilled to hear that her problems stem from a bipolar disorder, a very serious psychiatric condition. She even rationalizes her relief by telling herself that many famous people have also suffered from this disorder. Now reflect on your own experiences waiting for answers in difficult situations.


Have you ever had to wait for difficult news? How did the waiting make you feel?

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Brain on Fire Summary Brain on Fire Guide A Break from Self

Susannah and her mom visit Sarah Levin, the psychiatrist recommended by Dr. Bailey. Susannah makes the case for her being bipolar. Levin concludes that Susannah is experiencing manic and depressive states, and she prescribes a drug commonly used for mood and thought disorders.

Susannah’s mom has doubts. She calls Susannah’s younger brother, James, and asks him if he thinks Bailey’s diagnosis of alcoholism and Levin’s diagnosis of bipolar disorder are correct. James says no to both. Susannah’s mom agrees with him.

Later that night, Susannah becomes convinced that all her problems are caused by her anti-seizure medication. Her mother begs her to stay on the drug. In one of her last moments as the old, compassionate Susannah who doesn’t want to cause her mother pain, Susannah takes the pill. Later that night, she makes herself throw up to get the drug out of her body.

In the morning, Susannah writes the first document that would later function as a diary of this period—a suggestion made by Allen. Writing things down makes Susannah feel like she’s piecing together what’s wrong with her. “I’m bipolar,” she writes. “That’s why I’m me. I love work. I have to break up with...

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Shortform Exercise: Rejecting Authority

Dr. Bailey believes that Susannah is in bad health because she drinks too much. In spite of Dr. Bailey’s reputation as a top neurologist, Susannah’s mom refuses to accept his diagnosis.


What made Susannah’s mother so sure of herself that she was able to reject the opinion of a respected authority?

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Brain on Fire Summary Brain on Fire Guide Part Two: Susannah’s Month of Oblivion

Susannah is admitted to NYU Langone’s Advanced Monitoring Unit (AMU), for patients with severe epilepsy. It has been ten days since her first seizure.

At the AMU, patients are monitored 24 hours a day via electrodes implanted in their brains and two cameras over each bed—physical and electrical evidence of seizure activity. The hospital discards most of the footage, keeping only seizures and abnormal events. These recordings will be crucial to Susannah’s reconstruction of her illness once it has passed.

During her first few hours on the floor, Susannah is fitted with electrodes and given a little pink backpack holding her own EEG...

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Brain on Fire Summary Brain on Fire Guide From Delusions to Psychosis

On Susannah’s second day in the hospital, a team of doctors and nurses arrives to conduct another neurological exam. Susannah interrupts the exam to tell one of her neurologists, Dr. Russo, that the people on the TV are saying bad things about her. She throws herself off the bed and pushes her way past the team toward the door. Russo later diagnoses Susannah as manic and psychotic, with two possible diagnoses: bipolar disorder or postictal psychosis, psychotic behavior generated by seizures.

Later that morning, Dr. Siegel arrives. He’s a world-famous neurologist, and he assures Susannah’s mom that everything will be fine. Susannah’s mom clings to his words as if they’re a lifeline.

The next day, Susannah is visited by a psychiatrist, Dr. Khan, who describes Susannah as “disheveled” and “fidgety,” noting that her pajamas are “revealing.” This visual description matches the psychological profile of mania.

While Khan takes notes, Susannah announces that she has multiple personality disorder. She repeats her belief that it’s not safe for her in the hospital and says that she can hear the nurses’ thoughts. Khan asks what else Susannah can hear, and Susannah says, “The...

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Brain on Fire Summary Brain on Fire Guide Dr. Najjar

Susannah’s bloodwork and autoimmune tests come back negative. Her MRIs and CT scans are clean. Forced by this evidence to rule out most of the diagnoses they had in mind, Susannah’s doctors begin to wonder whether they’ll actually be able to figure out what’s wrong with her.

Dr. Siegel, the physician on whom Susannah’s mom has pinned her hopes, quits Susannah’s team. Susannah’s mom is devastated. She now believes that Dr. Russo is their only hope—until Russo brings up the name of a Dr. Souhel Najjar, the doctor to call when nothing makes sense. Both Russo and Najjar order a second spinal tap for Susannah.

Unbeknownst to Susannah’s family, Siegel asked Najjar to join Susannah’s team. Najjar has a track record of solving a number of mystery cases, and Siegel has confessed that he’s stumped by Susannah’s case. Based on Siegel’s expert summary, Najjar suggests that Susannah might have viral encephalitis. Without seeing her, he prescribes an antiviral drug and recommends testing Susanah for viral encephalitis, caused by a herpes virus. Again, all the tests come back negative.

Najjar next suggests that Susannah’s condition might be an autoimmune response. He immediately...

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Brain on Fire Summary Brain on Fire Guide A Diagnosis at Last

That afternoon Dr. Russo gives Susannah’s dad the news they’ve been waiting for: Dr. Dalmau has confirmed a diagnosis of anti-NMDA-receptor encephalitis.

Medical Aside

While there are treatments that can reverse the course of the disease, full recovery is not assured. 75 percent of patients fully recover or maintain mild side effects; 20 percent remain permanently disabled; 4 percent die even with a swift diagnosis. “Mild” side effects could impair Susannah’s sense of humor, vitality, and drive, but Dr. Najjar believes she can retrieve as much as 90 percent of her former self.

Dr. Russo explains that Susannah’s disease is frequently instigated by a tumor. If Russo finds any links to Susannah’s earlier bout with melanoma, the team will move on to chemotherapy. At the word “chemotherapy,” Susannah starts to sob.

Being diagnosed with a rare disease changes Susannah’s status in the ward. Doctors, interns, and residents invade her room to discuss her condition. One young intern speaks as if Susannah isn’t present, telling the group that Susannah’s ovaries may have to be removed.

Susannah begins to cry. Her dad bolts to his feet. “Get the fuck out of this room,”...

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Brain on Fire Summary Brain on Fire Guide Part Three: The Long Road to Recovery

Still vastly divorced from her old self, Susannah has little self-awareness when she’s released from the hospital. The road to recovery will be long, with many bumps in the road. Several painful incidents make this clear, even to Susannah:

Stephen brings her to his sister’s house. Susannah emerges from the car and walks unsteadily down the drive, her arms stretched out stiffly in front of her, her eyes unfocused. The bald spot from her biopsy is still held together by metal staples. Her eyelids are bathed in yellow crust.

Stephen’s sisters are shocked by her appearance. His nephew is frightened. Susannah knows she’s not quite herself, but she didn’t realize that her appearance would be so upsetting to people who knew her before her illness.

In one instance, Susannah’s brother, James, is home for summer break from college. Nothing...

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Brain on Fire Summary Brain on Fire Guide A Divide Between Inner and Outer Self

Susannah makes significant progress over the next few months, but her pills make her sleepy and slow, and sometimes she refuses to take them. In her own mind, she’s uncertain about herself, but she always describes herself as nearly 100 percent back.

Experts are called in to assess her progress. Susannah dreads the assessment, as the experts may contradict her assertion that she’s fine. In fact, her fears turn out to be correct; the assessments reveal a divide between Susannah’s internal world and the world around her.

She presents as severely impaired on tests of concentration, basic cognitive functioning, and working memory, yet her performance on verbal functioning, abstract reasoning, and analytical thinking reveal a different story. On those tests, Susannah places in the high to superior percentile. Dr. Bertisch, the psychologist who administers the test, concludes that Susannah’s interior world does not match up with the way she presents externally.

Susannah herself is aware of this divide. Social situations are especially difficult because she’s aware of how strange she appears to the people around her. **Susannah often feels that her true self is trying to connect...

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Brain on Fire Summary Brain on Fire Guide Same But Different

Nevertheless, when she compares pictures of herself taken before and after her illness, she notices that something has changed; something in her eyes reveals something lost...or gained.

In her everyday life, she notes subtle, unidentifiable differences that indicate she’ll never be the same person she was before.

She now talks in her sleep. She has to live with the possibility of relapsing (20 percent of patients who have recovered from her illness experience a relapse; patients who did not have teratomas, like Susannah, experience a higher relapse rate). When colors seem too bright, she wonders whether she’s going crazy again. Some of these changes scare her.

Even fully recovered, Susannah can remember only the hallucinations she experienced during her illness; she can’t recall its day-to-day reality. This strange discrepancy makes her wonder whether she can rely on her own mind. Why does she continue to favor hallucinations over reality? Why do those particular hallucinations persist? How did they materialize in the first place?

Medical Aside

Hallucinations

Hallucinations occur when the brain perceives a sensation that has no...

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Shortform Exercise: Reframing the Negative

Even though Susannah has gone through a terrible experience, she wouldn’t undo the past. Think about what she’s gained from her ordeal and how she changed a negative experience into a positive one.


How did Susannah reframe her own story to make it positive?

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Table of Contents

  • 1-Page Summary
  • Part One: Onset of the Disease
  • The Hallucinations Begin
  • Exercise: Assessing Motivations
  • A Break from Self
  • Exercise: Rejecting Authority
  • Part Two: Susannah’s Month of Oblivion
  • From Delusions to Psychosis
  • Dr. Najjar
  • A Diagnosis at Last
  • Part Three: The Long Road to Recovery
  • A Divide Between Inner and Outer Self
  • Same But Different
  • Exercise: Reframing the Negative