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.
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.
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.
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 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.
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.
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.
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:
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.
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.
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 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, Susannah has loved every second of it—keyboards clacking, news junkies high on adrenaline, rows of cubicles marked with Manhattan street signs. She’s intimidated by Steve, who was made head editor of the Sunday edition though he’s only in his thirties, and she finds comfort in Paul, an old-time newspaperman with a tendency to swear.
Today is Tuesday, the day reporters pitch their ideas for the Sunday paper. It’s such an important ritual that reporters work feverishly to deliver the best pitches they can. Susannah usually goes to the meeting with at least three well-developed ideas, but when the meeting is called today, she realizes it’s completely slipped her mind.
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.
A few days later, Susannah wakes up contentedly, the pitch meeting, the bedbugs, and the migraine all forgotten. She’s alone in her boyfriend’s bed; Stephen’s a musician, and he’s already at rehearsal.
Susannah and Stephen have only been dating for 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. Without thinking about what she’s doing, she opens his computer and combs through his correspondence, not stopping until she finds old messages from his ex.
She tiptoes to his dresser to find other potential signs of betrayal. Suddenly she freezes, overwhelmed by a paranoid sense that he’s watching her via hidden cameras. Although the unfamiliar feeling frightens her, she keeps digging through his things, flinging his clothes on the floor, until she finds a cardboard box full of pictures and letters from exes dating back to his teens.
She reads through the letters, cackling at grammatical errors. As she reaches for another picture, she catches sight of herself in the mirror. Clad only in her underwear, her hair wild, her boyfriend’s letters clutched between her thighs, she sees a stranger staring back at her. The image disgusts her. “I don’t act like this,” she thinks to herself. “What is wrong with me?”
She checks the time. Two hours have passed, not five minutes, as she had thought. She’s overcome by nausea and another migraine. Her left hand begins to tingle, then goes numb.
The tingling lasts for days. Susannah, more worried by her uncharacteristic behavior than by telltale physical symptoms, ignores it until the numbness moves down to her toes. At that point, Susannah contacts her doctor, Dr. Rothstein, who’s alarmed by her symptoms and refers her to Dr. Bailey, a famous neurologist, that afternoon.
Dr. Bailey is a grandfatherly man. His demeanor makes Susannah want to reassure him that everything’s fine. When she tells him she has a weird numbness in her hand and foot, he asks if she’s ever had Lyme disease, which she has not.
Bailey conducts a routine neurological exam, testing her reflexes and muscle strength, seeing if her pupils constrict. He declares everything is normal, though he says he wants to do some bloodwork and have her take an MRI.
Susannah is usually casual about her health. She even shrugged off an incidence of melanoma five years earlier when it was caught early and easily removed. Normally she would put off getting an MRI, but today something compels her to take it right away.
A 30-something lab technician leads Susannah to a private changing room and hands her a cotton gown. He waits outside as she disrobes, dons the gown, and drops her lucky ring—a graduation present from her stepfather, Allen—into a lockbox.
In the MRI room, the technician innocently props her up on the platform and tucks a blanket around her bare legs in preparation for the test. A half hour later, the test is done, but Susannah feels exposed in just the cotton gown. The technician grins at her and tries to make conversation, but Susannah doesn’t reply, thinking he’s flirting. She throws on her clothes in the changing room and rushes to the elevators to avoid another conversation with the technician. Over time, his innocent remarks would take on a malevolent cast created entirely by Susannah’s disease. At home, Susannah realizes she’s left her lucky ring in the lockbox at Bailey’s office.
Susannah obsesses over her lucky ring. She’s overcome with nausea at work the next day and has to be walked home by her coworker Angela.
Angela makes Susannah call her doctor. Dr. Rothstein tells her the results of the MRI are normal, then suggests that Susannah has a virus, possibly mono. She’s relieved to finally have a diagnosis.
Contrary to habit, Susannah takes three days off work, telling her mom she has mono. Her mom’s more worried about the numbness, which hasn’t abated. On her third day off work, Susannah’s dad comes to visit.
“What’s that smell?” he asks when she opens the door. They survey her apartment together. The dirty kitty litter. The overflowing trashcan. The floor covered with unwashed clothes. Black trashbags from the phony bedbug scare.“You can’t live like this,” he tells her.
Susannah returns to the office the next day, feeling ashamed about the state of her apartment and the poor quality of her work as of late. When she pitches two more stories and they’re both rejected, she blames her poor performance on mono and takes another day off. She gets a call from Rothstein, who says her bloodwork has come back and she doesn’t have mono; it was probably a garden-variety virus. Susannah is convinced she’s healthy and persuades Stephen to go skiing for the weekend.
On the slopes, Susannah panics. She begins to conjure up more and more outlandish scenarios—what if she can’t make it down the mountain? What if they leave her and can’t find her body later on?
Medical Aside
This type of illness ebbs and flows, making the patient mistakenly believe it’s gone.
Back at work, Susannah is asked to interview TV newsman John Walsh. To prepare for the interview, she makes her way to the Post’s archives, where she’s greeted by the librarian—a Wiccan priestess outside of work. Rather than ask the librarian to bring her the articles she needs to prepare for the interview, Susannah asks her to read her tarot cards instead. Innately skeptical of witchcraft and religion, Susannah desperately wants something to believe in right now. The Wiccan priestess tells Susannah that good things lie ahead, and Susannah is overcome with relief.
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 the bathroom to splash cold water on her face, but as she looks around the bathroom, the stalls suddenly look alien to her. Has she really ever used one before?
Susannah asks another colleague for advice, and the woman gives her an excellent piece of counsel: Susannah should write down every symptom, no matter how small it is. Even the tiniest detail could turn out to be important. Susannah returns to her desk, writes down the word “insomnia” and shouts, “Everything’s going to be great!”
Buoyantly happy for the moment, Susannah saunters over to Paul’s desk and invites him downstairs for a smoke. As she talks a mile a minute, Paul becomes increasingly concerned, convinced she’s on the verge of a breakdown. Excusing himself, he goes upstairs and tells Angela to call Susannah’s mom.
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 seizure.
Medical Aside
Seizures take many forms. During a tonic-clonic seizure, the victim goes rigid, blacks out, shakes uncontrollably, and foams at the mouth. Susannah’s first seizure was tonic-clonic.
Other seizures, called partials, are more subtle, like bouts of staring, mental fogginess, or repetitive movements. All seizures indicate disturbance somewhere in the brain. Disturbance in the visual cortex produces hallucinations. Disturbance in the motor cortex produces zombielike movements.
While Susannah’s tonic-clonic seizure was instantly recognizable, she had been experiencing other types of seizures since the onset of her illness. Overstimulation of the areas responsible for memory and emotion produce bouts of euphoria, like when she shouted that everything was going to be okay; feelings of confusion at familiar scenes, like the alien bathroom stalls; and sensitivity to light, like the garish colors in Times Square. Some patients report an out-of-body experience, like the one Susannah experienced while smoking on the street.
Seizures can have many causes, such as a tumor, sleep deprivation, and alcohol withdrawal. In Susannah’s case, they indicated a problem at the molecular level in her brain. Untreated, seizures can lead to cognitive defects or death.
Susannah would go on to have many more seizures, but her first seizure marked a division between a period of time she could remember and a month-long stretch of oblivion that she would not be able to recover without the aid of hospital records, her friends, family, doctors, and video recordings made in the hospital.
Her first seizure also separated the onset of the disease, when Susannah was still “herself” in spite of her increasingly uncharacteristic behavior, from full-blown mental illness, when Susannah’s personality, memory, and identity were completely subsumed by her neurological condition.
Susannah awakes in the emergency room, Stephen by her side. When she sees a homeless man vomiting a few feet away and a bloody man handcuffed to a gurney, surrounded by police officers, she demands to be moved to another room. The doctor agrees, and she’s filled with a triumphant sense of power. En route to her new room, she inexplicably screams that she’s going to sue the MRI technician for flirting with her. Looking back, Susannah views this as the moment when her personality begins to evaporate as she succumbs to the disease.
A young resident discharges Susannah from the hospital. They’ve already done a CT scan, blood test, and basic neurological exam, and they can do nothing more for her. Stephen objects, but the resident tells him that sometimes seizures happen once and never return. Nevertheless, he tells Susannah to see a neurologist the next day.
Alerted to Susannah’s seizure by Stephen, Susannah’s mom and stepdad pick up Susannah the following morning to bring her to their home in New Jersey, where they can look after her. Susannah’s stepdad, Allen, has a schizophrenic brother. As Susannah’s condition deteriorates, Allen’s familiarity with mental illness will prove to be a huge asset.
Settling into her mom’s home in New Jersey, Susannah tries to work on an article about a troupe of disabled dancers, but she’s unable to write. Desperate to tell her mom and Allen about this new breakdown in her abilities, Susannah wanders to the family room, where she has another hallucination and goes into a trance. Her mom and Allen make an appointment with Dr. Bailey for the following day.
Many of Susannah’s friends and coworkers call to express their concern. Although Susannah would normally accept the calls, the only one she takes now comes from a colleague whose mother is a psychiatrist. Based on Susannah’s symptoms, the psychiatrist has suggested that Susannah has bipolar disorder and is having a manic episode. Once again, Susannah is thrilled to get a diagnosis, however dire it is. Many famous people, like Beethoven, Mark Twain, and Winston Churchill, suffered from bipolar disorder, so Susannah feels like she’s in good company.
Medical Aside
The National Institute of Mental Health describes bipolar disorder as a disease that causes unusual shifts in mood; often develops during the late teens or early adulthood; and generates overly joyful and hopeless states—all of which described Susannah.
Dr. Bailey does another basic neurological exam and once again concludes that Susannah is “normal.” He asks Susannah how much she drinks, and she tells him she usually has two glasses of wine a night, adding that she believes she has bipolar disorder. He says it’s a possibility and refers her to a psychiatrist. Before they leave the office, Dr. Bailey tells Susannah’s mom that Susannah is working and partying too hard and not sleeping enough. Like Susannah, her mom is filled with relief. That the diagnosis isn’t serious is exactly what she wants to hear. Only later will Susannah learn that Bailey missed many important details, like where she was when she had her first seizure.
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?
If you got bad news, did you embrace it, even though it was bad?
Looking back on your reaction, do you feel you responded appropriately?
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 Stephen. I’m jumbly. Work takes too much out of my life.”
That night Susannah wanders into the sitting room to tell her mom and Allen that she wants to leave Stephen. She wanders out of the room but comes back to tell them she wants to leave her job at the Post. She leaves again and returns to tell them she’s figured it out: She wants to leave New York City. She leaves the room once more. This time, when she returns, she has another seizure. Frantic, Susannah’s mom calls Dr. Bailey, who tells them to come in in three days for another EEG.
Susannah is getting worse by the hour. Over the next few days, she smacks her lips together, trails off mid-sentence, and stares off into space before continuing her conversation. At these moments, a childlike state replaces her paranoid aggression. She continues to keep a diary, desperately attempting to express a deep, dark part of herself, piecing together what’s wrong with her. Many of these entries will remain incomprehensible to Susannah even after the disease has passed, but some of the entries provide insight into parts of her life Susannah has never before examined. “I read people well but I’m jumbly,” she writes. “Who gives a crap what they thing [sic] of me.”
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 throw herself out of the moving car.
Stephen tells her that her behavior is not okay. She notices that he’s using a new tone of voice and obeys him. After settling down, she goes into panic mode again and flings herself against the locked car door. Finally, she falls asleep on Stephen’s shoulder.
When she wakes up, she insists on being fed. They stop at a diner, where Susannah pushes her way past the long line and shouts, “Get me coffee and an egg sandwich!”
“To go,” Stephen quietly tells the man behind the counter.
Sandwich and coffee in hand, Susannah saunters out of the diner, feeling powerful for making things happen. She then throws the food on the floor of the car, saying she’s not hungry anymore.
At Dr. Bailey’s, Susannah undergoes a rigorous EEG. The technician tells Susannah nothing is wrong with her—it’s in her head, just like those stressed-out Wall Street bankers. Susannah laughs bitterly, because now she knows the truth: her family has set up this EEG to punish her for her bad behavior.
Allen and Susannah’s mom agree to let Susannah return to Manhattan under her father and stepmother’s care. All goes well at first, but as Susannah and her dad head for the subway, Susannah’s paranoia returns. She starts screaming on the street, and her father has to push her into a cab to get her to his home in Brooklyn. “They’re kidnapping me!” Susannah yells at the cabbie. She tells her dad she’s calling the police. She’s convinced she isn’t safe in his care.
Exhausted by the time they get to her dad’s place, Susannah just sits on the couch and stares as her dad and stepmom, Giselle, prepare her favorite meal, pasta. When they set it before her, though, Susannah has another hallucination; the tomato sauce is too bright. The basil pulsates. The cheese glistens. Susannah refuses to eat. After dinner, she has another hallucination like the one she had in the car with Allen. She thinks she hears Giselle saying, “You’re a spoiled brat,” even though Giselle’s lips don’t move.
Susannah has other hallucinations that night. A painting comes alive. A bust of Lincoln follows her with its eyes. Her childhood dollhouse is haunted. Her father is beating Giselle.
Convinced her father is going to kill her, Susannah is desperate to get out. She runs to the front door of the brownstone and bangs her fists against the door, screaming, “Let me out! Help!”
She hears her father run downstairs, and she scoots into the bathroom, locking herself in. She’s about to jump out the window when she spots a statue of Buddha on the bathroom counter. It convinces her that everything will be all right, and she smiles.
It takes Susannah’s dad an hour to coax her out of the bathroom. When Susannah falls asleep in his lap, he calls Susannah’s mom; they both agree she must be admitted to a hospital. However, both insist that she not be put in a psych ward.
Allen and Susannah’s mom drive in from New Jersey the next morning to take Susannah to Dr. Bailey’s, where they ask him to draw up admittance papers. He refuses, insisting that her EEG was normal, along with her MRI, exam, and bloodwork. He repeats that Susannah drinks too much and refuses their request.
Her mom won’t buy it. Under pressure, Bailey gives in and secures Susannah a room at NYU, on a floor that has 24-hour EEG monitoring.
As soon as they arrive at the hospital, Susannah has a seizure in the Admitting Room.
From here on in, Susannah has no memories of the next month. No longer are there any 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.
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?
Have you ever rejected the opinion of an expert or someone you trust, like a family member? What was the situation?
What gave you the confidence to reject their opinion?
What did you learn from this experience that you can apply in the future? Under what conditions would you do the same in the future?
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 monitor. Allen arrives, and Susannah screams at the nurses to get him out of her room. She does the same when her father arrives, telling a neurologist that he’s playing tricks on her and is not her father but an imposter.
Medical Aside
Patients with “Capgras syndrome” suffer from delusions that family members are imposters. The syndrome was originally thought to be an indication of schizophrenia. Doctors now believe it can be caused by neurobiological damage, as well as other conditions.
That evening, a neurologist comes to Susannah’s room to conduct a health history. Susannah accurately conveys information about her health but also tells the neurologist that her dad is changing into different people to play tricks on her. “Unclear if hallucinating,” the neurologist diagnoses. Later that night, Susannah is convinced that someone is watching her in the bathroom. She calls her mom, telling her that the nurses are trying to hurt her.
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.
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 people on the TV.” Khan concludes that the team should be looking for neurological causes for Susannah’s psychosis. If they can’t find a neurological cause, Khan suggests they consider a diagnosis of bipolar I, a mood disorder characterized by manic and depressive episodes.
Susannah stares at the doctor as she writes her notes. As she’s staring, she has a visual hallucination: The doctor ages right before her eyes. Susannah turns to Stephen, who’s also in the room, and sees him age too. “I can make people age with my mind,” Susannah thinks to herself. “I’m more powerful than I’ve ever been.”
Later that day, a fifth doctor joins Susannah’s team. Dr. Arslan is a psychopharmacologist, who suggests that Susannah might be suffering from “schizoaffective disorder,” a condition in which mood disorders overlap with thought disorders. He does not tell Susannah’s parents about his suggestion, believing the severity of the diagnosis would upset them.
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 parents, she recommends transferring Susannah to a psych ward if warranted.
Susannah’s dad has noticed that she receives better care from the exasperated nurses when she has company, so he starts visiting every day, arriving first thing in the morning. Susannah continues to believe her hallucination that her dad murdered his wife, so she won’t let him in the room. Instead, he takes up vigil in the hallway just outside her door.
Susannah’s mother starts to visit at least three times a day. She keeps detailed notes and a running list of questions for Susannah’s team of doctors. She and Susannah’s father develop a journal system to communicate with each other, as their nasty divorce still makes it difficult for them to speak face-to-face.
Stephen, too, has made a pact to stay by Susannah’s side as long as she needs him. He comes every day, bringing nature documentaries that relax Susannah without her knowing it.
Four more doctors join Susannah’s team. One of them takes her blood pressure and is instantly alarmed: It’s so high that it could cause bleeding in the brain, a stroke, or death.
Susannah has been moved to a new room in the epilepsy ward. It’s peaceful and quiet. Her dad is happy with the change, as well as a newfound warmth in Susannah’s attitude toward him. Heartened, he asks if she’d like to take a walk around the floor. His happiness vanishes when he sees that Susannah can only walk with difficulty. In order to appear positive, he suggests a family motto. “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 begins to spend most of her time staring off into space. On her fifth day in the hospital, the doctors seize on Susannah’s passivity to give her a spinal tap.
Medical Aside
In a spinal tap, doctors use a needle to withdraw fluid surrounding the brain and spinal cord. The patient must remain completely still to avoid injury; movement can cause paralysis or death. Susannah’s psychotic states had made the necessary procedure too dangerous to attempt.
Susannah has been in the hospital for nearly a week. Stephen and her family continue their routine of staying in the hospital with her every day, hours on end, feeding her gourmet food, reading aloud to her, or playing cards, though she’s usually too confused to follow the game. Her mother makes sure the best doctors visit regularly. The staff allows Stephen to stay long past visiting hours because his presence calms Susannah and keeps her from escaping.
He plays a country music video for her in the hope that the music will bring her back, but in reality, her short-term memory has been destroyed— each time she watches the video, it’s like she’s seeing it for the first time.
Susannah looks forward to her walks around the floor, but by this time she’s lost key parts of her brain function, as well as a fair amount of motor control. When her cousin Hannah gives her a birthday present, Susannah can no longer tear off the wrapping paper, nor can she recognize the author’s name on the cover of the book, though it’s a writer she knows well. 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, as if it’s too big for her mouth. She drools and her tongue hangs out. She can’t drink out of a normal cup and speaks in garbled sentences that degenerate into grunts. She’s also making continuous chewing motions and weird grimaces, while her arms keep stiffening out in front of her. Her team suspects that these symptoms, along with her elevated blood pressure and heart rate, indicate a problem in the brainstem or limbic system.
Medical Aside
The brainstem is one of the oldest and most primitive parts of the brain. It controls life-or-death functions such as blood pressure, heart rate, and breathing.
Diagnosing which part of the brain is responsible for a certain behavior is difficult, as one behavior may be controlled by many different areas of the brain. If one area goes out, many connections are altered.
Dr. Siegel informs Susannah’s mom that Susannah’s spinal tap shows an elevated number of white blood cells. This is usually a sign of infection or inflammation and indicates that Susannah’s illness is physiological rather than emotional in nature. The news finally gives Susannah’s mom a clue she can wrap her head around. She spends the rest of the evening Googling medical terms like “meningitis” and “multiple sclerosis.”
Susannah receives her first visits from nonfamily friends. It’s difficult for her to carry on conversations, but the visits seem to make her happy. Somehow she’s able to pull herself together for her visitors even though they exhaust her so much that she’s unable to communicate for hours afterward.
Work friends Julie and Angela leave the hospital after one of their visits wondering if Susannah will ever be the same again. Yet something of Susannah remains. She can’t read anymore, but her dad gives her a notebook to record how she feels and what’s causing her difficulties. She even asks him to list the people who sent her flowers so she can thank them later.
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 puts Susannah on IVIG treatment, a protocol he used successfully on another patient. On April 2, a nurse arrives to give Susannah the first of five IVIG infusions. Hallucinating that the nurse is responsible for her illness, Susannah punches her in the chest.
Medical Aside
Under normal conditions, our immune system creates antibodies to combat infections from foreign invaders like viruses or bacteria. On rare occasions, the immune system manufactures antibodies that attack cells or tissues in a person’s own body. When this happens, the person develops an autoimmune disease like lupus, multiple sclerosis, or the type of brain inflammation that Susannah suffered from.
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 psychosis to inflammation from an unknown cause.
The doctors start looking for a source of infection in Susannah’s brain.
By this time, Susannah is constantly drooling and smacking her lips, even in her sleep. She stares straight ahead, as if sleeping with her eyes open, her tongue hanging out.
The mysterious Dr. Najjar finally shows up, to the excitement of Susannah’s family. 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 particularly notes symptoms the other doctors hadn’t explored: her bedbug phobia, numbness and tingling in her hands, her faster heart rate. He addresses Susannah directly, as if he’s speaking with a friend rather than a patient.
His bedside manner is personal and heartfelt. When he was a boy, he did badly in school until one teacher recognized his potential. As a result, he has committed himself to never giving up on anyone.
Najjar begins a series of bedside tests. Susannah responds monosyllabically, with a significant lisp. Her reflexes are bad, her pupils don’t constrict properly, and she can’t touch her hand to her nose. She walks stiffly, with delays between steps, angling toward her left side. He concludes that she’s hellishly catatonic.
But then he has an idea: the clock test. Ripping a sheet of paper from his notebook, he hands it to Susannah and asks her to draw a clock. At first, Susannah can’t draw a circle and has to ask for another sheet of paper. She draws a circle and outlines it three times. Then Najjar asks her to fill in the numbers.
Susannah desperately tries to remember what a clock looks like. She begins writing the numbers down, getting stuck on one, drawing another several times. Finally, she gets them all filled in.
The sight of Susannah’s clock makes Najjar so ecstatic that he nearly applauds. Susannah’s parents stare at him in confusion: Susannah has squished all the numbers into the right side of the circle. The left side is completely blank. Najjar explains to them that Susannah’s test provides concrete evidence that the right side of her brain is inflamed.
Medical Aside
In the brain, the right hemisphere is responsible for the left field of vision, and the left hemisphere is responsible for the right field of vision. When the right hemisphere is impaired, the patient will not “see” on the left side.
This is not to say that the patient is blind on the left side. The left eye is still receiving visual information and sending it to the right hemisphere to process, but the right hemisphere can’t process it correctly. Doctors call this “visual indifference,” as if the right side of the brain just doesn’t care about the left side of the world.
Dr. Najjar has a flash of insight: what if Susannah’s inflammation is the result of an autoimmune reaction? What if her own immune system is attacking her brain? He recalls a paper written by a Dr. Dalmau at the University of Pennsylvania, describing four young women stricken by a rare autoimmune disease. Could Susannah have the same condition?
Dr. Najjar has other questions, too. How much inflammation is there? Can her brain be saved?
He knows he can only answer these questions by removing a tiny portion of her brain for study, but he doesn’t know if Susannah’s parents will agree to such a drastic procedure.
The longer Susannah goes without intervention, the smaller her chances of recovering. Recognizing the gravity of the moment, Najjar paces around the room before sitting on the bed next to Susannah.
“Her brain is on fire,” he announces to Susannah’s parents. Then he turns to her and says, “I will do everything I can for you.”
Susannah comes alive. She sits up and throws her arms around Dr. Najjar, tears gathering in the corner of her eyes. Sensing the real Susannah is still in there somewhere, he motions to her parents to follow him out of the room. In the hallway, he tells them that the best way to treat her is to do a brain biopsy. “I would do it if it were my child,” he gently cautions.
They’re overwhelmed by the news. Separately and together, they sob. They pray. Eventually, after much terrified soul-searching, they consent to the operation.
Two days before the surgery, the head nurse comes to Susannah’s room to describe what’s about to happen. Susannah listens calmly, but she and her dad break into tears that evening. As they laugh and cry together, he brings up the family motto. “What’s the slope of the line?” he asks. Susannah can’t remember. “Positive,” her dad urges. Susannah angles her arm upwards, as her dad had done the first time. “Getting better every day,” he smiles.
On Monday morning, Susannah is wheeled into surgery. She doesn’t react when a resident shaves her head. Interpreting this as a sign of strength, her dad kneels by the side of her bed, tears in his eyes, and asks once again, “What is the slope of the line?” This time she responds: “Positive.”
Medical Aside
Brain biopsies are relatively simple compared to other forms of brain surgery, but they involve dangerous risks, such as infection or mistakes.
Susannah’s biopsy involved a process called frameless stereotactic neurosurgery. It visually maps the brain in two and three dimensions, enabling the surgeon to accurately target a specific region of the brain—in Susannah’s case, the right frontal cortex.
First the surgeon made an incision in Susannah’s scalp. He parted the skin and used a high-speed drill to create a 1-centimeter hole in the skull. He then used a bigger drill to grind the bone into dust to remove a 3-centimeter piece of bone plate.
This exposed the protective layer of Susannah’s brain. The surgeon removed a section, then removed 1 cubic centimeter of brain tissue, including white and gray matter.
With the tissue removed, the surgeon stopped the blood flow, stitched a graft onto the brain’s outer layer, sutured it, and reattached the piece of bone plate with screws and a metal plate. He finished by replacing the outer layer of skin in its original position and closing the scalp with staples.
The surgery lasted four hours.
The biopsy confirms that Susannah’s brain is inflamed, seemingly 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. Her panic attacks increase, accompanied by grimacing, shaking, and zombie-like arm motions.
Dr. Najjar believes Susannah has autoimmune encephalitis. Dr. Russo thinks she has paraneoplastic syndrome, a condition associated with cancer: As the immune system attacks the cancer, it may also attack healthy tissue in the spine or brain, causing psychosis or catatonia.
They’re also investigating a third possibility. Drs. Russo and Najjar send Susannah’s cerebrospinal fluid to Dr. Dalmau, the neuro-oncologist who had conducted the study on four young women that Dr. Najjar remembered when he saw Susannah’s clock test. Like Susannah, the four women in Dalmau’s study had a high white blood cell count and suffered from hallucinations, confusion, and memory deficits. They also had two other things in common: an ovarian tumor and antibodies that disable a critical apparatus in the brain called the NMDA receptor. By the time Susannah is struck by the disease, Dr. Dalmau has developed two tests that allow for a swift and accurate diagnosis.
Medical Aside
Everything we do, from lifting a glass to reading a book, results from a chemical signal triggering specific brain cells to fire or not. If a cell can’t receive a signal, it can’t initiate or inhibit behavior.
Cells receive signals through receptors. NMDA receptors excite cells that participate in learning, memory, higher functions, and personality. In 2007, Dr. Dalmau identified a new disease that would come to be called anti-NMDA-receptor encephalitis. This condition is caused when antibodies disable NMDA receptors. Experiments indicate that a 40 percent loss of NMDA receptors results in psychosis. A 70 percent loss results in catatonia. An absence of any working NMDA receptors results in death.
While they’re waiting for the results of Dalmau’s tests, Susannah’s team decides to assess Susannah’s cognitive skills. They’ll use the assessment as a baseline for judging future progress.
The assessment reveals that Susannah has a language impairment caused by brain injury. She recognizes and remembers objects but cannot retrieve the words for them. Because Susannah becomes frustrated at doing badly on the tests, the neuropsychologist concludes that Susannah knows she’s not functioning at her normal level. The neuropsychologist recommends that Susannah be enrolled in cognitive therapy.
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,” he rages at the intern. He reassures Susannah the intern has no idea what he’s talking about.
Susannah is checked for tumors; she has none. Najjar decides to put her on an aggressive treatment plan—her condition is too precarious to allow it to worsen. If his decision is wrong, Susannah might never recover, but she’s too close to the edge to do otherwise.
Medical Aside
With anti-NMDA-receptor autoimmune encephalitis, antibodies can persist months after the disease has run its course. Recovery is often halting, with a 4 percent chance of mortality.
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. It might not be enough to retrieve Susannah’s former self, but they have a plan, and Susannah’s going home.
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 of the disease.
Two weeks after her discharge, Susannah returns to NYU for her weeklong plasma exchange. The plasma is injected through a catheter placed directly into Susannah’s jugular vein. It has to stay in place all week, held in place by tape.
Stephen picks her up at the end of the week. On the drive back to Summit, he turns on the radio and begins to sing along. Susannah joins him on the chorus, belting out, “California Dreamin; on such a winter’s day!” Stephen watches her with joy. After weeks and weeks of waiting, he can see that Susannah is still in there.
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 could have prepared him for his first sight of Susannah. She wobbles into the room on Stephen’s arm, dressed in oversized clothing and scratched-up glasses, her face puffy and distorted, looking like an old woman who’s lost her cane. It takes a few minutes before she even notices James. When she does, the surprise and sympathy on his face take her breath away. Until that moment, she hasn’t realized how ill she still is. “I love you,” they whisper to each other, wavering in the doorway.
On another occasion, on the train platform with her mom, Susannah hears someone call her name. She ignores the voice, unsure whether it’s real or a hallucination. She hears the voice again and turns around to see an old high school friend. “How are you doing?” the friend asks. Before her illness, Susannah was a first-rate conversationalist, but today she comes up blank as she strives to find something to say. Finally, she draws out “Goooooood,” even as her mind screams at her to say something else. “Great seeing you,” her friend says, concerned, before gliding off. Never has Susannah felt so powerless. Her mom grabs her hand and leads her to the car, away from this soul-crushing moment.
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.
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 with the world outside but can’t break past her body.
Dr. Bertisch suggests that Susannah attend group therapy, individual psychotherapy, and a young adult group. Unsure of herself, and unwilling to admit to the chasm between what she knows and what she’s able to convey, Susannah ignores Bertisch’s suggestions.
Susannah worries that she’s become boring. Her family tries to assure her it’s not true, but no one can shake Susannah’s belief that she’s now a dullard. For Susannah, this is the most difficult adjustment to make to her new self.
Medical Aside
When the brain’s frontal lobes are impaired, the patient may behave childishly, have dulled emotions, or be completely devoid of thoughts or feelings.
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.
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 people to thank, projects to start, articles to write. She begins studying for the Graduate Record Exam in case she decides to go to grad school.
As a result of her illness, Susannah has gained 50 pounds. She calls herself a “roasted pig” and obsesses about being fat. In fact, her worries about being fat are worries about who she will become: Will she remain as slow and unfunny as she is now, or will she regain the spark that defines her true nature? Part of her believes she’ll never again be the carefree, confident Susannah she was. When people ask, “How are you?” Susannah recognizes that she no longer knows who “I” is.
That is, until she receives a package in the mail. It’s her lucky ring, which she left in the doctor’s office before her first MRI: a metaphor wrapped up in a bow, reminding her that all is not lost.
As time progresses, Susannah regains former functions and personality traits. When people ask her to explain her illness, she tells them only that her body attacked her brain. However, when Paul, her Post editor, asks her to explain it, she decides to summarize her experiences. She sends Paul a one-paragraph email, ending with “I know what it’s like to go crazy.” It’s enough for Paul to assure her 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.
Medical Aside
Scientists currently have little understanding of what triggers anti-NMDA-receptor autoimmune encephalitis. In people with teratomas, the tumor may set off an autoimmune attack. In the absence of teratoma, causes may be environmental or genetic. Because there is so little understanding of what causes the disease, researchers focus on diagnosis and treatment rather than prevention.
Susannah maintains a regular correspondence with Paul, who actively encourages Susannah to return to work. They hit on a strategy: Susannah will casually stop by the Post offices to say hello in mid-July.
On the appointed day, Susannah dresses up and takes a train into the city. However, as soon as she arrives at the Post office building, the adrenaline that’s bolstered her confidence rushes out of her body. It’s too soon, she thinks.
She texts Paul to meet her outside. He tries to banter with her, as in the old days, but Susannah can’t keep up. He struggles to maintain a careless facade, but they both know she can’t handle her duties. “Your desk is ready for you,” he says nevertheless. “Come on upstairs.” Looking at the ground, she admits she’s not ready to go back right now. They hug briefly, then Paul disappears inside the building, worried that the new Susannah is not the Susannah he once knew.
In spite of this disastrous meeting, two weeks later Susannah gets an assignment to write a piece for the Post’s entertainment section. She manically jumps into researching the story, phoning sources and compiling her notes, but when she sits down to write, she’s suddenly overwhelmed by writer’s block. She stares at the screen. Slowly, an hour later, the first words come, then others. Soon they’re coming like a fountain.
Susannah’s article runs in the Post on July 28. She’s published hundreds of pieces before, but none have meant more than this one. It signals her redemption. It shouts, “Susannah’s back!” She instantly drops her plans for going to grad school: Susannah’s returning to the Post.
A week later, Susannah visits the office. Still overweight and anxious about her appearance, she feels uncomfortable. She becomes even more distressed when she realizes everyone sees her discomfort. Suddenly she feels like a lab rat, exposed, waiting to be dissected. She’s jolted by the thought that she might never again feel comfortable in the newsroom where she grew up.
A month later—seven months after her illness forced her to leave work—Susannah returns to her job at the Post for good. Human Resources advises her to start off slowly, but she jumps in as if she never left. She tackles every article with fiery enthusiasm, however trivial the story. Unable to type as quickly as before, she records her interviews, her speech slow, plodding. Sometimes she slurs her words. Angela guides Susannah without making it appear she needs help. Paul discreetly edits 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.
Medical Aside
Dr. Dalmau and other researchers are currently studying how patients recover from anti-NMDA-receptor encephalitis. When Susannah returned to work, she was in an “imprecise” stage, during which the patient is normal according to family, friends, and physicians, but not according to the patient herself. It can take as long as two or three years, even longer, to easily perform tasks that had come naturally before.
One day Susannah gets her hair colored. She feels like a million bucks as she leaves the salon. As she saunters to the subway on her way back home, she bumps into an ex-boyfriend, but all she sees is pity in his eyes. The encounter knocks her off balance. She catches sight of herself in a window and is shocked by her image: frizzy hair, puffy face, chubby frame. She hates herself for how she’s changed and despairs of ever ridding herself of the self-doubt she now endures.
Susannah and two colleagues from work attend a lecture Dr. Najjar is giving on anti-NMDA-receptor encephalitis. In the lecture, he uses Susannah as a case study. Though he never cites Susannah’s name, her colleagues recognize that the lecture is about Susannah.
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:
To illustrate Susannah’s article, the photo editor wants to run images from the EEG videos taken during Susannah’s hospital stay. When Susannah sees herself onscreen, she shudders. There she is on camera, staring into the lens, her hair dirty, her hospital gown slipping off her shoulder. Her eyes blaze with manic fear, as if she’s staring into the face of death. She mouths a single word: “Please.”
Susannah is frightened by seeing herself so unhinged. What frightens her more, though, is 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. Acknowledging how lucky she is to have recovered, Susannah is overwhelmed by survivor’s guilt. One man, whose wife is ill, calls Susannah and aggressively challenges, “Why did you get better while my wife’s still sick? Are you so sure you won’t get sick again?” Two weeks later, he calls back to tell Susannah that his wife is dead.
Yet Susannah receives other types of phone calls. One comes from Bill Gavigan, whose daughter fell ill and was routinely misdiagnosed for more than a year. The girl was saved only because Bill’s sister sent him a video of Susannah talking about the disease on the Today show, along with Susannah’s article in the Post. Bill gave the video and the article to his daughter’s neurologist, who immediately agreed to test Bill’s daughter for anti-NMDA-receptor encephalitis. The girl was diagnosed and treated by Dr. Dalmau’s colleagues. She made a complete recovery. On the phone, Bill tells Susannah, “Without you, our daughter would be dead.”
Susannah’s article is translated into Arabic and published in multiple papers throughout the Middle East. Syria’s news agency publishes numerous stories of the Syrian boy who’d become a miracle doctor in the US. The Syrian ambassador to the UN congratulates Najjar personally. That same year, Najjar is designated one of the best neurologists in the US by New York Magazine.
Susannah returns to the Post full-time. She and Stephen move in together. In a few months, she feels comfortable in her own skin again. There’s no longer a gap between what she feels inside and how other people see her. She doesn’t struggle for words anymore. She feels in control. Most importantly, she’s regained her old sense of humor.
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 external source. Because hallucinations are self-generated, they are believable and remembered in vivid detail, a process termed the generation effect.
Mental illness is not the sole source of hallucinations. A 2010 study at Cambridge University found that injecting healthy student volunteers with the drug ketamine broke down their sense of reality. Ketamine blocks NMDA receptors in the brain, much like the autoantibodies in Susannah’s illness.
Memories
Our brains form memories when two different areas of the brain identify an experience as important enough to be remembered. The hippocampus gives the experience context. The amygdala associates the experience with an emotion. The higher the emotion, the more likely the experience will be preserved as a memory. When these areas are compromised by disease, a memory may not form.
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 flood Susannah’s mind: Stephen arriving with his nature DVDs. Her father feeding her. Her mother staring out the window.
In addition to 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.
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.
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?
Do you think that Susannah’s work on behalf of patients with her disease helps her deal with her past?
Looking back on your own life, have you had a difficult experience that you wouldn’t give up? How has it changed your behavior?