PDF Summary:Brain on Fire, by Susannah Cahalan

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.