At the age of 24, New York Post reporter Susannah Cahalan is stricken with a terrible disease. In a matter of weeks, it morphs from paranoia into hallucinations, seizures, and psychosis. It resists diagnosis even by the most prestigious doctors in the US. Only when Susannah becomes catatonic, staring death in the face, do two brilliant neurologists discover the problem: Susannah is suffering from an autoimmune disease that’s causing her antibodies to attack her own brain.
Cahalan’s harrowing portrait shows how frail disease makes us, ready to accept any diagnosis, even when we know it’s wrong; how the US healthcare system serves some patients better than others; and how maintaining a positive attitude is critical to recovery.
1-Page Summary of Brain on Fire
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.
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.
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. **Though Bailey is still convinced Susannah just drinks too much, he secures her a room at NYU Langone’s Advanced Monitoring Unit, with 24-hour EEG monitoring. As soon as they arrive at the hospital, Susannah has a seizure.
From here on in, Susannah has no memories of the next month. There will be no glimmers of the “I” she had been for twenty-four years. She is unable to access her rational consciousness, and the break with her self is complete.
Susannah’s Month of Oblivion
Susannah is fitted with electrodes. When her father appears in her hospital room, she commands the nurses to get him out, claiming he’s an imposter. She’s suffering from Capgras syndrome—delusions that family members aren’t who they say they are. Once thought to indicate schizophrenia, the syndrome is now thought to indicate neurobiological damage, among other causes.
That evening, Susannah becomes convinced that someone is watching her in the bathroom.
When a nurse enters the room, Susannah has another hallucination—she “hears” the nurse saying, without moving her lips, “I see you on the news.” Later that night, Susannah makes her first escape attempt. The nurses catch her as she dashes from her room and return her, kicking and screaming, to her bed.
The next morning, a team of doctors and nurses conducts another neurological exam. Susannah tells them the people on TV are saying bad things about her. They diagnose her as manic and psychotic. 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. **
A psychopharmacologist joins Susannah’s team. He suggests Susannah is suffering from “schizoaffective disorder,” a condition in which mood disorders overlap with thought disorders.
Video recordings made by the cameras over Susannah’s bed reveal that at 11:06 that evening, Susannah is trying to make a phone call using the TV remote control. “Oh my God,” she suddenly cries out. “I’m on the news. PUT THE TV BACK ON!”
Susannah grabs the wires on her head and pulls them out along with chunks of hair. She leaps out of bed and sprints past the security guard. The nurses catch her and hold her down. “Let me go,” Susannah spits out. “Please.”
One of Susannah’s doctors changes her diagnosis from “seizures” to “psychosis.” She recommends transferring Susannah to a psych ward if warranted.
Trying to Stay Positive
Susannah is moved to a peaceful new room in the epilepsy ward. Happy with the change, her father asks Susannah if she’d like to take a walk around the floor. When he sees that Susannah is having trouble walking, he suggests a motto to stay positive. “What’s the slope of the line?” he says, indicating an upward angle with his arm. “It’s positive,” he says when Susannah doesn’t answer. “What does that mean? It means we make progress every day.”
As Susannah continues to deteriorate physically, her psychosis seems to recede. She spends most of her time staring into space. On her fifth day in the hospital, she’s given a spinal tap.
By this time Susannah’s lost key parts of her brain function and a fair amount of motor control. When her cousin Hannah gives her a birthday present, Susannah can no longer tear off the wrapping paper. To Hannah, Susannah appears like she has Parkinson’s disease.
Susannah exhibits troubling new symptoms at the beginning of her second week in the hospital. She slurs her words and her tongue twists when she speaks. She drools and can’t drink out of a normal cup. She speaks in garbled sentences that degenerate into grunts. She makes continuous chewing motions and weird grimaces. Her arms keep stiffening out in front of her. Her doctors suspect that she has a problem in the brainstem or limbic system.
Susannah’s spinal tap shows an elevated number of white blood cells—usually a sign of infection or inflammation, indicating that Susannah’s problem is physiological rather than emotional in nature. The news finally gives Susannah’s mom a clue she can comprehend.
Susannah’s team runs autoimmune tests and bloodwork. The tests come back negative. Similarly, her MRIs and CT scans are clean. **Susannah’s doctors begin to wonder whether they’ll actually be able to figure out what’s wrong with her. **
Dr. Siegel, the world-famous neurologist, quits Susannah’s team. Unbeknownst to Susannah’s family, he asks Dr. Souhel Najjar to take on Susannah’s case. Najjar has a track record of diagnosing a number of mysterious diseases. Based on Siegel’s expert summary, Najjar suggests that Susannah might have viral encephalitis. He prescribes a second spinal tap and an antiviral drug, and tests Susanah for viral encephalitis. **All the tests come back negative. **
Najjar next suggests that Susannah’s condition might be an autoimmune response. He immediately treats her with intravenous immunoglobulin and plasma exchange, but her condition keeps deteriorating.
Susannah’s family begins to wonder if she’ll recover, until the results of her second spinal tap come in. Her white blood cell count has skyrocketed, indicating that her brain is probably inflamed. Her diagnosis is changed from psychosis to inflammation from an unknown cause, and the doctors start looking for a source of infection in Susannah’s brain.
Dr. Najjar finally shows up. Explaining that** **in order to see the future, it’s necessary to look backward, he asks Susannah’s parents for a full medical history. He notes symptoms other doctors hadn’t explored: her bedbug phobia, numbness, the tingling in her hands. He’s **committed himself to never giving up on anyone. **
Najjar performs a number of tests and concludes that Susannah is “hellishly catatonic.” Then he has an idea: the clock test! He hands Susannah a sheet of paper and asks her to draw a clock. After numerous attempts, Susannah shows her picture to Najjar: She’s squished all the numbers into the right side of the circle. Najjar claps his hands, ecstatic. He understands that this is concrete evidence that the right side of Susannah’s brain is inflamed. When the right hemisphere is impaired, the patient will not “see” on the left side.
**Suddenly Dr. Najjar has a flash of insight: what if Susannah’s inflammation is an autoimmune reaction? **He recalls a paper describing four young women stricken by a rare autoimmune disease. Could Susannah have the same condition? He can only answer these questions by removing a tiny portion of Susannah’s brain for study.
After much soul-searching, Susannah’s parents consent to a brain biopsy. It confirms Susannah’s brain is under attack by her own immune system. She’s put on the highest possible dose of intravenous steroids, but her condition doesn’t improve right away.
Najjar sends Susannah’s cerebrospinal fluid to Dr. Dalmau, the neuro-oncologist who studied the four young women with a rare autoimmune disease. Dalmau confirms a diagnosis of anti-NMDA-receptor encephalitis, a disease caused by Susannah’s antibodies attacking her brain. Najjar puts Susannah on an aggressive treatment plan.
After twenty-eight days in the hospital, Susannah is discharged. She’ll need an at-home nurse; biweekly visits to the hospital to flush out the antibodies with a plasma exchange; a full-body 3-D scan; and full-time rehab.
Still vastly divorced from her old self, Susannah has little self-awareness when she’s released from the hospital. She makes significant progress over the next few months, but in her own mind, she’s uncertain about herself.
Experts are called in to do an assessment. It reveals a divide between Susannah’s internal world and the world around her. 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 with the world outside but can’t break past her body. **She worries that she’s become boring—the most difficult adjustment to a new self she has to make.
Search for the Self
Susannah’s old self finally reawakens. She begins reading again and starts keeping a diary. Her
father encourages her to draw upon her memory, but she can recall only numbness, sleepiness, and three seizures. She remembers nothing from her time in the hospital.
As a result of her illness, Susannah has gained 50 pounds. She obsesses about being fat. Her worries about being fat are actually worries about who she will become: Will she remain as slow as she is now, or will she regain the spark that defines her true nature?** When people ask, “How are you?” Susannah recognizes that she no longer knows who “I” is.**
Susannah regains former functions and personality traits. She summarizes her experience for Paul, her mentor at the Post, and he certifies that her writing skills have returned.
Paul’s encouragement is all Susannah needs. She begins a program of research and becomes obsessed with understanding how a human body attacks itself. Paul actively encourages Susannah to return to work. On the appointed day, Susannah dresses up and takes a train into the city, but both she and Paul realize it’s too soon for her to return to work.
Two weeks later Susannah gets an assignment from the Post. Her article is published on July 28. **She’s published hundreds of pieces before, but none have meant more than this one. It signals her redemption. **
A month later—seven months after her illness forced her to leave work—Susannah returns to her job at the _Post. Human Resources advises her to _start off slowly, but she jumps in as if she never left. Unable to type as quickly as before, she records her interviews, her speech slow, plodding. Sometimes she slurs her words. Her coworkers discreetly edit her work, reeducating her in the basics of journalism. Susannah is convinced she’s back to normal, but in fact, she still has a long way to go before she returns to her former self.
Susannah the Patient Meets Susannah the Reporter
That afternoon, the Post’s Sunday editor asks Susannah if she’d be willing to write a first-person account of her illness. It’s the assignment Susannah has been hoping for.
She has four days to write the story. She interviews Stephen, her family, and Drs. Najjar and Dalmau. She learns many things in the course of her research:
- Children make up 40 percent of those diagnosed with the disease.
- Many adults diagnosed with the disease were originally diagnosed with schizophrenia or autism.
- It’s cost-prohibitive to test all psychiatric patients for an autoimmune disease.
- Many doctors don’t keep abreast of current medical research.
The Post’s photo editor wants to illustrate Susannah’s article with images from the EEG videos taken during her stay in the hospital. Watching the videos, Susannah is frightened by seeing herself so unhinged, but she’s more frightened by the fact that emotions that once wracked her so completely have vanished entirely. **The Susannah in the EEG video is a foreign entity to the Susannah writing about her own illness. **
On October 4, Susannah’s article runs in the Post. She receives hundreds of emails from people who have the disease and want to know more about it. She even receives phone calls from people who want a diagnosis from Susannah herself. In a few months, Susannah feels comfortable in her own skin again.
Same But Different
Nevertheless, when Susannah compares pictures of herself taken before and after her illness, she notices that something has changed. In her everyday life, she notes subtle differences that indicate she’ll never be the same person she was before.
Sometimes memories from her month of oblivion rush back to her, knocking her off balance. With each memory recovered, she wonders what others remain, knowing there are thousands she’ll never retrieve. The other Susannah, the mad Susannah, calls out to her, saying, “Don’t forget me. Please.”
At one time, Susannah couldn’t answer yes to the question, “Would you take it all back if you could?” Today, she doesn’t regret her month of madness. Its darkness yielded too much light.
Besides writing Brain on Fire, Susannah has shared her stories with universities, hospitals, and psychiatric institutions. She helped start the Autoimmune Encephalitis Alliance, a nonprofit foundation fostering research and awareness of the illness.
Full Summary of Brain on Fire
Part One: Onset of the Disease
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.
At the height of the New York City bedbug scare in 2009, Susannah finds two red d…
Read the rest of the “Brain on Fire” summary at my new book summary product, Shortform.
Here’s what you’ll find in the full Brain on Fire 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
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