PDF Summary:Brain on Fire, by Susannah Cahalan
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1-Page PDF Summary of Brain on Fire
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.
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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.
Dr. Najjar
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.
Brain Biopsy
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.
Going Home
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.
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Here's a preview of the rest of Shortform's Brain on Fire PDF summary:
PDF Summary Part One: Onset of the Disease
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When it’s her turn to speak at the pitch meeting, Susannah starts to ramble on about a story she saw on a blog, desperately hoping for some real ideas to come. Steve interrupts her, saying, “Don’t come in unprepared again.” Paul’s face blazes with rage. Susannah leaves the meeting, furious at herself and bewildered by her own behavior. How had she let that happen? Her colleague Angela tells her not to worry; she’s a pro and shouldn’t take the lapse seriously.
Still, Susannah continues to brood about her bad performance. At home, she prepares for the exterminator by throwing out hundreds of Post clips she’d written over the past seven years. Much like her obsession with bedbugs and her bad performance at work that day, throwing out her beloved clips runs contrary to Susannah’s nature.
After hours of throwing things out, she feels a terrible dread in the pit of her stomach. Her mind is pierced by a white-hot flash like a migraine, though she’s never had one before. She stumbles to bed, convincing herself she’s gotten the flu from a man who sneezed on her in the subway.
Susannah’s Paranoia Increases
A few days later, Susannah wakes up contentedly, the pitch...
PDF Summary The Hallucinations Begin
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Susannah’s now by herself on the street. She feels wobbly. She floats above the crowd, seeing the top of her own head. The Wiccan librarian walks by and tells Susannah she’s just experiencing astral travel.
Susannah returns to the newsroom. To get a better idea of what’s going on, Angela invites Susannah to go to a nearby bar at a local hotel, where they can talk. En route to the bar, Susannah has a panic attack. She’s overcome by fear and begins to sob.
Finally, they reach the bar. The abstract patterns in the carpet merge and swirl in front of Susannah’s eyes. She tries to ignore it, but when Angela asks her what’s really going on, Susannah finally admits that something is happening to her but she doesn’t know what it is.
That night marks a turning point. Stephen pampers Susannah by cooking her an elaborate meal, but she uncharacteristically lies to him about going to the bar with Angela. Her thoughts run wild. She paces and chain-smokes. She gags over dinner. She’s consumed by the desire to escape. Though she hasn’t slept in three days, she can’t fall asleep. She tries watching a cooking show, then everything goes hazy.
And dark.
**Susannah has her first...
PDF Summary A Break from Self
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Medical Aside
Complex partial seizures can produce trance-like states, repetitive mouth movements, and foggy consciousness.
The night before Susannah is to see Dr. Bailey, Stephen comes to New Jersey to take Susannah out to dinner. Susannah’s family has told him about her condition, but he believes she needs to maintain some semblance of normalcy. When they enter the crowded restaurant, Susannah feels everyone is staring at her. She hears them whispering, “Susannah, Susannah.” Her breathing gets shallow and she begins to sweat. Stephen grabs her hand and they leave. At the next restaurant, she can’t eat. On their way back to the car, Susannah has two conflicting thoughts: She either has to break up with Stephen, or she has to tell him she loves him.
She tells him she loves him, and he says he loves her too.
The next day, stomping her feet like a two-year-old, Susannah refuses to go to Dr. Bailey’s for her EEG. Finally, Stephen convinces her to go. On the way to the doctor’s fancy office in New York City, Susannah has a hallucination: Allen is speaking without moving his lips. She thinks he says, “You’re a slut and Stephen should know.”
Enraged, she tries to...
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Learn more about our summaries →PDF Summary Part Two: Susannah’s Month of Oblivion
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When a nurse enters the room to tell Susannah not to use the phone, 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. A group of nurses catch her as she dashes from her room. They return her, kicking and screaming, to her bed.
PDF Summary From Delusions to Psychosis
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The video recordings made by the cameras over Susannah’s bed reveal that at 11:06 that evening, Susannah is trying to conduct a phone call using the TV remote control. “Oh my God,” she suddenly cries out and hits the call button for the nurse. “I’m on the news. PUT THE TV BACK ON!”
“We’re investigating Susannah Cahalan. Her father recently murdered his wife,” Susannah hears the news reporter say. On the video recording, Susannah grabs the remote and speaks into it again. “Please get me a doctor,” she moans. “Please.” She hears the woman in the next bed talking on her cell phone: “There’s a Post reporter in the bed next to me. I’m going to record her and we can sell it to the Post.” Then the woman whispers to Susannah, “I don’t trust the nurses here. They’re bad news.”
Susannah grabs the wires on her head and pulls them out along with chunks of hair. She leaps out of bed, sprinting past the security guard, racing into the arms of a nurse. The purple lady holds her down on the cold floor. “Let me go,” Susannah spits out, her teeth clenched. “Please.”
Susannah’s behavior prompts Dr. Russo to change her diagnosis from “seizures” to “psychosis.” Without telling Susannah’s...
PDF Summary Dr. Najjar
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IVIG infusions contain healthy antibodies from thousands of blood donors. Each infusion costs more than $20,000.
Susannah receives her second course of IVIG treatments. By this time, she’s become catatonic. Her brain cells are misfiring, making it impossible for her to sense her body in space. She sits in awkward poses. Her speech has degraded even further.
In spite of her wretched condition, the people who love her will not give up hope.
“She’s still in there,” Stephen tells Susannah’s dad.
“That’s who we’re fighting for,” Susannah’s dad replies.
Yet the situation continues to go downhill. Susannah’s chewing motions, staring episodes, and zombie arm movements become more frequent, even as every test comes back negative. The IVIG injections aren’t working. Dr. Siegel is no longer on the case, and Dr. Najjar hasn’t even shown up. What will prevent the other doctors from giving up too? Susannah’s family secretly begins to wonder whether she really will make a recovery.
But then the results of Susannah’s second spinal tap come in. Her white blood cell count has gone from 20 to 80, indicating that her brain is probably inflamed. Dr. Russo changes the diagnosis from...
PDF Summary A Diagnosis at Last
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On the way back to her mom’s house in Summit, New Jersey, Susannah bops her head out of rhythm to her favorite karaoke song. She swings her elbows front to back, her arms at rigid angles. It’s impossible to tell whether she’s dancing or having a seizure. When they pull into the driveway, Susannah stares straight ahead, making constant chewing motions with her mouth. Even later, she will not recall this moment of homecoming.
Nevertheless, Susannah insists on showering and dressing herself, determined to be on her own. Later that night, she has a psychotic episode. Susannah’s mom relays the incident to Dr. Arslan, who becomes concerned about the reappearance of psychosis and puts Susannah on an extra dose of drugs.
Medical Aside
Dr. Arslan did not know that psychosis was actually a sign of recovery.
At the time of Susannah’s illness, doctors were unaware that the stages of recovery progress in reverse order. Susannah had become psychotic before she became catatonic, so progressing from catatonia back through psychosis was actually a sign that Susannah was improving.
Two years after Susannah’s illness, Dr. Dalmau publishes a paper addressing this facet...
PDF Summary Part Three: The Long Road to Recovery
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In another upsetting instance, Susannah was supposed to be a bridesmaid at her stepbrother’s wedding, but the bride believes Susannah should no longer participate in the ceremony. Shamed, Susannah decides to convince everyone she still “has it.” Grabbing onto a tangible connection to her former self, Susannah insists on drinking flute after flute of champagne, regardless of how dangerous it is to mix alcohol and antipsychotics. The champagne symbolizes independence, and everyone allows Susannah to drink for the sake of her dignity.
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PDF Summary A Divide Between Inner and Outer Self
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Susannah’s slowness was probably a result of the electrical impulses in her frontal lobes not firing or taking too long to get to their intended targets. At the height of her disease, her frontal lobe function was described as “close to zero.”
Susannah makes a big mistake in ignoring Bertisch’s suggestions. After injury or illness, the brain has a window of time for spontaneous healing. Discounting it reduces the opportunity for faster recovery.
Search for the Self
Susannah’s old self finally reawakens when she’s in the hospital for another round of treatments. She begins reading again. She begins keeping a diary to understand what’s happened to her.
Susannah’s father encourages her to draw upon her memory to create a timeline of events. As she tries to remember, she can recall only numbness, sleepiness, and three seizures. She remembers nothing from her time in the hospital.
Alarmed by the depth of her memory loss, Susannah’s dad invents a new motto: “You must leave the past behind in order to move forward.”
Because Susannah doesn’t want to face the fact that she can’t live on her own, she focuses on her future instead, keeping to-do lists of...
PDF Summary Same But Different
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Memories are often inaccurate. Each time our brain recalls a memory, it rewrites it, adding new, possibly fictitious, information. For instance, Susannah’s memory of an orange band on her wrist saying Flight Risk wasn’t real; in fact, she had a yellow band that said Fall Risk.
On the other hand, authentic memories can be triggered by our senses, like the sudden recognition of a recognizable smell, color, or image.
Memories rush back to Susannah, 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.” The new Susannah knows that no matter how many memories she regains, or how much research she does, many bits of her life have simply vanished. Still, she’s comforted by the fact that even though she was not conscious during her lost month, some part of her was present after all.
Two years after her release from the hospital, Susannah returns to NYU for a visit. Much to her disappointment, nothing looks familiar. Until she’s hit by a smell. And she sees the purple lady. They hug, and images...