What would you do if you woke up in a hospital not knowing how you came there? This is what happened to 24-years old journalist Susannah Cahalan from New York. She couldn't recall what was going on in her life for the past month and was told that she was admitted to the best New York hospital in the state of madness. After receiving her medical treatment she found out that her case was the first one in USA and she decided to discover it by wirting a book about her experience "Brain on Fire" which became American Bestseller in 2013. Disease she was suffering from is called anti-NMDA receptor encephalitis, which is manifested in brain abnormalities. At the beginning doctors assumed that her symptoms originiate from mental problems, then they started experimenting with other misdiagnosis. Fortunately syrian doctor Souhel Najjar who was having practice in the same hospital showed interest for her case and was the first one that knew about the rare condition she was suffering from.
“We are, in the end, a sum of our parts, and when the body fails, all the virtues we hold dear go with it.”
— Susannah Cahalan
The book was adapted into a film in 2014 directed by Gerard Barrett with Chloë Grace Moretz in the main role.
It was on a March night when Susannah and her boyfriend spend some time together by watching PBS after the hard day. He fell asleep and woke up seeing her having a seizure. Her arms whipped straight out in front of her, her eyes rolled back and the whole body stiffened. She tried to exhale but her lungs inhaled repeatedly without letting the air out. Blood and foam were spurting out of her mouth. The view was indescribable.
“Someone once asked, "If you could take it all back, would you?"
At the time I didn't know. Now I do. I wouldn't take that terrible experience back for anything in the world. Too much light has come out of my darkness.”
— Susannah Cahalan
Anti-NMDA receptor encephalitis
Anti-NMDA receptor encephalitis is a type of brain inflammation caused by antibodies. At the beginnning of disease it is followed by fever, headache, feeling tired. This is then typically progressed into psychosis which presents with false beliefs (delusions) and hallucinations. Majority of patients experience seizures, agitation and confusion. Half of cases are associated with tumors, most commonly teratomas of the ovaries. Another trigger might be herpesviral encephalitis, while the cause in others cases is still unclear.
Anti-NMDA receptor encephalitis is autoimmune disease with the primary target NMDA receptors in the brain. It is diagnosed by finding specific antibodies in cerebral spinal fluid. MRI of the brain is often normal so misdiagnosis is common.
For treatment immunosuppresive medication is used and, if a tumor is present, surgery to remove it. About 80% of those affected are female (due to most common trigger - teratomas of ovaries).
“Sometimes, just when we need them, life wraps metaphors up in little bows for us. When you think all is lost, the things you need the most return unexpectedly.”
— Susannah Cahalan
About Susannah Cahalan
Susannah Cahalan was born on 30th of January 1985 and was raised by her mother and stepfather in Summit, New Jersey. She enjoyed writing and reading since she was in elementary school and in 2003 she joined Washington University in St. Louis and graduated in English literature. While studying she started working as a news reporter for the tabloid "New York Post" where she continued working after graduation. When she was only 24 she started experiencing numbness and paranoia, sensitivity to light, she would often have severe migraines, but at that time she thought it was due to work pressure. Her condition started progressing and her behaviour changed drastically, as she described in her book. Doctor Najjar who made the right diagnose for her disease also inpired the title of her book Brain on Fire. When she was having seizures and her parents worriedly looked at the doctor he told them: "Her brain is on fire, I am going to do everything I can for you."
In 2009 Cahalan received the "Silurian Award of Excellence" for her article "My Mysterious Lost Month of Madness" which later became the base of her memoir, "Brain on Fire".
In 2019 Susannah wrote her second book "The Great Pretender: The Undercover Mission That Changed Our Understanding of Madness". In the book she accused imprtant psychologist David Rosenhan (who died on 6th of February 2012) of having revealed false results of seminal research that was later published in the journal 'Science.'
While she was researching about the illness she was suffering from, she went through Rosenhan's experiment and found out the deeper truth about it and questioned the validity of the experiment.
She is currently working on her next publication about the history of psychiatry, most probably titled "Committed".
She also serves as a board member of the non-profit organization "The Autoimmune Encephalitis Alliance" and as an international ambassador for the UK's "Encephalitis Society". She currently lives in Brooklyn, with her husband.
© 2021 Aida Vlasic