About a Brain on Fire

Having recently made my way back into the world of academia, I decided to take a stroll down memory lane by leafing through some of the papers I wrote during my time as an undergraduate student. One that stood out to me was a book summary I wrote about Susan Cahalan’s bestselling memoir Brain on Fire.

It is one of my favorite papers written in college because I both loved the teacher of the course and was fascinated by the source material they had instructed me to write about. Additionally, the book sits on the shelf behind my desk at work, and it tends to prompt questions from visitors wondering what it is about. Because of this, I would like to share it with my readers to encourage you to check out a truly fascinating book.

In the emotionally raw and refreshingly candid book Brain on Fire, Susannah Cahalan takes the reader on a journey through the ups and downs that were a result of the rare autoimmune disease that completely changed her life. From the beginning paragraph detailing the first signs of her disease to the last few chapters in which she describes how she has learned put her life back in order after such a harrowing experience, Susannah paints a detailed picture of how she went through a hellish experience and managed to come out the other end as a stronger person.

She describes one of the first signs of her illness as being a paranoia of having a bedbug infestation in her apartment. At the time, it may not have seemed to be anything other than a worry that the bedbugs that were taking over New York City might be in her apartment. However, when she looks back at the experience now, she can see that it was the first sign that something was not right. The paranoia did not stop with the bedbug obsession. Shortly after Susannah was consumed with that fear, she found the paranoia spreading to the relationship with her boyfriend, Stephen. Once she began to seek psychiatric treatment, this paranoia was viewed as being a sign of schizophrenia.

Aside from the paranoia that Susannah had begun experiencing, it was the occurrence of physical symptoms that made it clear that something was wrong with her. She started having debilitating migraines along with the feeling of pins and needles on the left side of her body. These symptoms began to worry Susannah, so she scheduled an appointment with her doctor. The doctor ran various tests and told her that it was probably nothing more than mononucleosis. This diagnosis alleviated her worries that the problems would worsen; however, these early symptoms were only the beginning.

One night as she watched TV with her boyfriend Stephen, it became evident that it was not a common virus that was causing Susannah’s symptom. Stephen had dozed off partway through watching TV, and he was suddenly awakened to guttural sounds emitting from Susannah. Her eyes were wide open, but it seemed as if she did not see anything in front of her. He worriedly asked her if everything was alright, and what followed will be forever burned on his mind. Susannah’s arms whipped out in front of her and blood and foam began to shoot out of her mouth. After a few moments of watching his girlfriend have a violent seizure, Stephen called an ambulance, which took Susannah to the emergency room. Little did Stephen know that this visit to the hospital would be only one of many times in the next month that his girlfriend would be in a hospital setting.

Following her time in the emergency room, Susannah temporarily moved in with her mother and stepfather, and it was during this time her symptoms began to grow much worse. She began having delusions that caused her to believe that people were saying terrible things about her and making fun of her behind her back. Along with the delusions that had begun to plague her, she also started showing some of the facial signs of schizophrenia that included repeatedly smacking her lips together as if she were sucking on candy. On top of all of the aforementioned symptoms, Susannah continued to have seizures during the time that she stayed with her mother. Her doctor attributed the problems to excessive alcohol use, but after some time, he finally suggested that Susannah get checked in at the twenty-four-hour EEG monitoring floor at New York University. Susannah had no way of knowing that the day that she checked in at NYU would mark the beginning to what she refers to as her “lost month of madness.”

Once in the hospital, Susannah’s condition continued to worsen. Some of her symptoms now included dangerously high blood pressure, paranoid hallucinations, and even more severe facial tics. Her doctors concluded that a lumbar puncture was necessary to test her blood cell count to see if something non-psychological was causing her problems. After two lumbar puncture procedures, doctors saw that Susannah’s white blood cell count was quite high. This caused them to conclude that there was an inflammation of the brain that was causing the severe symptoms that Susannah was experiencing at a growing frequency.

It was ultimately Dr. Najjar, a Syrian neurologist who had a reputation for solving health cases that made sense to no one, who figured out what was causing the inflammation. During one visit with Susannah, Dr. Najjar had her draw a clock face and add numbers to it. When she wrote out the numbers, the result was a clock that had all of the numbers on the right side. This simple exercise gave Dr. Najjar solid evidence that the inflammation in Susannah’s brain was on the right hemisphere, and he concluded that the next step in discovering what illness she had would be to perform a brain biopsy.

The results of the brain biopsy confirmed that Susannah’s brain was indeed inflamed, and Dr. Najjar suspected that the inflammation was being caused by autoimmune encephalitis. To be sure of this, he asked Dr. Dalmau, a specialist in cases of encephalitis, to consult on Susannah’s case. Dr. Dalmau had developed tests to assess whether or not a patient had the rare form of autoimmune encephalitis, so he was able to quickly determine that Susannah did have Anti-NMDA-receptor encephalitis. The diagnosis fit her symptoms of progressing from flulike symptoms to the psychiatric symptoms that had plagued her. Susannah’s family was incredibly relieved to finally have a name for the illness that had been tormenting her.

Because a diagnosis had been determined for Susannah’s illness, the doctors were able to begin treatments to fight against the disease. The treatment involved using steroids to reduce the body’s inflammation, plasmapheresis to flush the body of the antibodies, and IVIG to reduce further and neutralize the antibodies. Since her treatment could be conducted partially at home and through hospital visits, Susannah found out that she was finally being discharged from the hospital. She had been in the hospital for twenty-eight days.

The treatment began to reduce Susannah’s illness effectively; however, it was not an easy road to wellness. The stages of recovery worked in reverse order, meaning that Susannah descended back into psychosis before she could reach a state of normality. This return to psychotic behavior frightened Susannah’s family, but once they learned that the recovery was working backward through the stages of illness, they were comforted by the fact that Susannah was finally on the mend.

It was a long and hard recovery process, but almost seven months after her initial breakdown, Susannah was able to begin writing at the New York Post again. She started slowly by writing small articles that she would have scoffed at in the past, but after all that she had been through, she saw them as a symbol of her return to normality. It was when her boss asked her to write an article about her ordeal with Anti-NMDA-receptor encephalitis that she began turning her dreadful experience into a beacon of hope for others who suffered from the disease.

Her article and subsequent book have been used to inform people around the world about the disease and to bring hope to some who assumed that their loved one would never be able to live a normal life again. Susannah’s story is one of incredible hope from darkness. When asked if she would go back in time and choose not to have the disorder, Susannah wrote, “I wouldn’t take that terrible experience back for anything in the world. Too much light has come out of my darkness.” Her journey from normality to madness and back again is a perfect example of how even the darkest moments in one’s life can be used to have a positive impact on the world.

2 thoughts

  1. Many of my former coworkers recommended this book, too! I haven’t had the chance to read it yet, but really want to now. On our floor we saw a lot of patients with these symptoms and would treat with exactly that: steroids, plasmapheresis, and IVIG. After 5 cycles (over 10 days) of plasmapheresis, the patients would be significantly improved and have very different personalities from when they were admitted. Sounds like this advancement in medicine was significantly due to this woman and her brilliant doctor!

Let me know what you think!