At a private screening of the movie “Brain on Fire,” premiering Friday at the Toronto International Film Festival, New York Post journalist Susannah Cahalan sensed her husband clenching his jaw.
The couple was watching the unsettling scene in which Chloë Grace Moretz — the young actress who plays Cahalan in the film, which is based on her best-selling memoir — has an unexplained seizure in the middle of the night.
It was a re-enactment of the frightening real-life convulsions Stephen Grywalski witnessed when his then-24-year-old girlfriend was unknowingly battling a rare neurological disease called autoimmune encephalitis.
“Stephen has PTSD from that experience,” says Cahalan, now 31 years old and The Post’s book editor. The 2009 health crisis left her shaking uncontrollably and frothing at the mouth, and led to a shocked Grywalski rushing her to the ER.
“Seeing it portrayed on film was a trigger for Stephen, but it wasn’t so hard for me because I have no memory of the seizures.”
Remarkably, Cahalan missed a month of her life while hospitalized at NYU’s Langone Medical Center for the mystery illness. She heard voices, suffered paranoid hallucinations and screamed out in terror. Later, she became catatonic.
Baffled, the doctors could only give her antipsychotic drugs and put her in restraints. Left untreated, the condition could have been fatal since victims can suffer severe cognitive damage, fall into a coma and die.
She was correctly diagnosed only after a Dr. House-type expert, Dr. Souhel Najjar, came on board with the case. Her symptoms had previously been wrongly chalked up first to mono, then alcohol withdrawal (she drank just two glasses of wine per night, but one inattentive doctor wrote two bottles of wine in her notes), and then the psychiatric disorder schizophrenia.
In an “aha” moment — after Cahalan drew a lopsided clock, indicating the right side of her brain was impaired — the specialist discovered the cause of her sickness was harmful antibodies in her immune system. Her body had effectively declared war on her brain.
“I was extremely lucky and have so much gratitude toward Dr. Najjar,” says Cahalan, who painstakingly pieced together what happened by interviewing her family and medical staff once she was treated with steroids and blood transfusions. “And now to see my story turned into a movie is mind-blowing.”
She first wrote of the ordeal in The Post in October 2009, after her editors were astounded by her diagnosis and months-long recovery. It turned out Cahalan was only the 217th patient found to be suffering from anti-NMDA receptor autoimmune encephalitis, the barely known neurological disease that was identified by scientists in 2005 and officially labeled just two years later.
Cahalan’s article was the basis for her best-selling book, “Brain on Fire” — Najjar coined the phrase in order to explain the condition to her parents — published in 2012. It caught the eye of actress Charlize Theron, who has her own company, Denver and Delilah Productions, and was made into the film starring 19-year-old Moretz last year.
Actor and filmmaker Tyler Perry plays Cahalan’s editor (a hybrid of The Post’s Paul McPolin and Editor-in-Chief Stephen Lynch), while comedienne Jenny Slate appears as her concerned colleague Margot (also an amalgam of several Post employees).
As co-producer, Cahalan was deeply involved with the script and spent three days on set in Vancouver, British Columbia. Syria-born Najjar was one of the medical advisers.
“Susannah is like a daughter to me,” says Najjar, now chairman of the department of neurology at New York’s Hofstra Northwell School of Medicine. “I didn’t think in my wildest dreams when I was focusing on saving her life that her case was going to call attention to this disease and help so many others.”
He is attending the Toronto premiere with his wife, Marwa. While excited by the glitz and glamour, he is most overwhelmed by the fact that his relatively obscure field of neurology has grabbed the spotlight.
Cahalan concurs. “I never imagined while going through this horrifying illness that I would write a book or that it could ever be a movie,” says the writer, who lives in Brooklyn with Grywalski, a 38-year-old musician. “To hear the words ‘autoimmune encephalitis’ in a movie is amazing to me, and I’m so proud.
“My number-one priority has been raising awareness.”
Since her case was publicized, thousands more have been safely diagnosed with the same condition after getting a spinal tap. Cahalan’s goal is to see every hospital offer the test to those with first-time psychosis. Neurologists already give patients a copy of “Brain on Fire” as part of their treatment plan.
Despite the seriousness of the subject, Cahalan still managed to have fun during the filming in Canada. In one hospital scene, she and her 27-year-old brother, James, appear as extras.
“It was hilarious because we played white-coated doctors examining one of my MRI scans,” she recalls. “We laughingly called ourselves Dr. Finkelstein and George Clooney, and James mouthed, ‘Her blood is running at an abnormally high level,’ to look authentic!”
The cast and crew were very friendly, and Cahalan was floored by Moretz’s acting ability. The similarity in looks between the two women is startling.
“Chloë is a powerhouse, and watching her on set was unreal,” says Cahalan. “She would go into these intense periods of psychosis or catatonia with this deep, physical portrayal, and then cut back to this fun-loving 19-year-old person, joking around and so charming and engaging.”
Interestingly, real-life video of Cahalan’s stay in the hospital epilepsy ward was interwoven with scenes featuring Moretz. It shows her confused and petrified, struggling to get out of her restraints and yelling for help.
Seeing the footage of herself bothers Cahalan less now that she’s watched it so many times, for her book and for the movie.
But she says the film has helped renew the overwhelming sense of relief that her condition was properly diagnosed and she was saved from what could have been life in an institution — or worse. Concludes Cahalan: “This movie has unleashed a whole new wave of gratitude.”
For more information about auto-immune encephalitis, visit https://aealliance.org/