The demon in my mind

Emily Gavigan, with dad Bill, suffered the same brain disorder.


Emily Gavigan, with dad Bill, above right, suffered the same brain disorder. (

Her hair looks stringy and dirty. Her body remains rigid as her eyes, wild and unfocused, turn and concentrate on the camera, on me now as I watch the screen.

“Please,” she mouths.

She hides her face under the covers, clutching the blanket so hard her knuckles turn white. She is terrified, like she’s looking death right in the face.

That petrified person is as foreign to me as a stranger, and it’s impossible for me to imagine what it must have been like to be her. Her mere existence has uprooted my sense of self and marred the vision of who I really am.

“Please,” I see myself plead on the video again.

But this is evidence. I don’t know her, can’t imagine being her, but I do know that I was once, not so long ago, trapped inside that sick, emaciated body, that crazed mind. And I know that there are others out there, right now, caught inside a world as horrifying and alien as the one these surveillance cameras have captured.

My nightmare began three years ago. At the time, it just seemed like part of the stress of a New York City life. The first sign was my conviction that my apartment had bedbugs when there were none. I began to feel uncharacteristically paranoid about my boyfriend’s ex. Then I stopped caring about my work as a reporter, ignoring deadlines and having wild mood swings at The Post. The lights in Times Square seemed aggressively bright. Doctors thought it was mono.

Everything culminated one evening when I had a seizure at my apartment. My boyfriend witnessed the horror of it: the blood and foam, the wide-open eyes, rigid limbs, unnatural grunts. That moment pushed me into darkness; it was the beginning of what I would later call my “lost month,” a time when I was unable to encode any long-term memories beyond shadowy hallucinations.

When the seizures wouldn’t stop, my family rushed me to the hospital and I spent the next month of my life at NYU Langone Medical Center, where frustrated doctors ordered $1 million worth of tests — including a brain biopsy — trying to figure out what was causing my increasingly bizarre behavior. I tried to escape several times, kicking and biting the nurses who tried to stop me. I had hallucinations, delusions of persecution and even believed I could age people with my mind.

For a while, some believed that I had schizoaffective disorder, a psychiatric condition that combines features of schizophrenia and bipolar disorder.

I was slipping away, heading into a catatonic state, when a new doctor, Dr. Souhel Najjar, whom my mother dubbed “Dr. House,” joined the team. He felt in his gut that my behaviors were more likely caused by a type of encephalitis than by a psychiatric disorder. He asked me to draw a simple clock. My lopsided drawing — with all the numbers, one through 12, on the right side of the clock — showed him that the right side of my brain, which is responsible for the left field of vision, had stopped working properly, leading him to believe it was likely caused by some kind of inflammation there.

I was ultimately diagnosed with a newly discovered disease called anti-NMDA-receptor autoimmune encephalitis, in which the immune system attacks the brain. At the time, I was only the 217th person to have it, but now thousands, if not more, have been diagnosed worldwide.

In this disease, the immune system’s cells specifically target the NMDA receptor, a central component in brain chemistry, vital to learning, memory and behavior. Though NMDA receptors are located all over the brain, they are in highest quantities in the hippocampus (primary memory center), the amygdala (where “fight or flight” reactions come from) and the frontal lobes (the seat of higher functions and personality).

Thus, when the NMDA receptors are reduced and compromised, there will be psychosis, hallucinations and paranoia. Then, as the disease progresses, catatonia, coma — even death.

I have managed to make a full recovery in the three years since my hospital stay, but not everyone is so lucky.

Though the disease was first named in 2007, doctors believe that it has been around as long as humans have, and that nearly all cases until now have gone undiagnosed.

Depending on where and when a person was afflicted, misdiagnoses ranged from schizophrenia in adults to autism in children or to something more sinister: Many doctors I’ve spoken to believe it might explain cases of “demonic possession” throughout history.


Just six months after my hospital stay, I wrote an article for The Post about my experience. Before writing the piece, I felt isolated by the disease — as the first recorded case at an institute as big as NYU, I thought I had no one with whom to share war stories. But I was wrong.

After the Post article ran, I was shocked when my inbox filled with hundreds of e-mails from parents with children who had recently been diagnosed with all kinds of autoimmune diseases, women and men my age in the throes of the same disease and people who suspected that their loved ones had it and wanted information about how best to treat it.

Almost everyone I spoke to had experienced delusions and hallucinations: a music teacher heard a full symphony outside her window; a young woman called out for a priest, certain that she was inhabited by the devil; a middle-aged wife believed her husband fathered a child with their neighbor; a young teenager was convinced that her dad was cheating on her mother; a man my age saw and heard TV news crews outside of his hospital room.

They had lost themselves, sometimes permanently. Some would never be as smart or funny or animated as before the illness. One man called to tell me that his wife had died not long after she and I had a conversation, in which I unfortunately gave them false hope about surviving the illness. But there had been no miracle cure for his wife, nor is there a miracle cure for everyone.

Recovery depends on the luck of the draw, as unfair, callous and, frankly, terrifying as that might sound. Even when the disease is properly treated there is still a 7% chance that patients will die anyway and a 15% chance that they will sustain long-term damage.

But there are the gifts, moments that make this whole terrible process worth every misstep. What I consider the most affirming moment of my life occurred during a phone call in 2010.

“Is this Susannah Cahalan?” a voice asked breathlessly.

“Yes,” I said, surprised. People did not usually say my name with such weightiness.

Over the phone, he shared with me his daughter’s story.

Emily Gavigan, then a college sophomore, became paranoid while on a school break at her parents’ home in Pennsylvania. She believed that pickup trucks were following her and tracking her movements on walkie-talkies. Her speech pattern was rapid and pressured. The next day, while they were driving to a Broadway show in Manhattan, Emily became convinced that they were being tailed. Her parents decided to turn the car around and head straight to the ER, where she was admitted to a psychiatric ward and placed under observation for 72 hours.

She was diagnosed with “psychosis not otherwise specified,” medical jargon for “we don’t have a clue.”

She was released briefly and returned to school but shortly thereafter was sent to another psychiatric institute, a place that her father likened to the setting for “One Flew Over the Cuckoo’s Nest.” She stayed there for three weeks.

It was around that time that her aunt saw me on television. She passed the article along to Emily’s father, who insisted Emily’s psychiatrist read it.

But the psychiatrist was unconvinced. “You have to come to terms with the fact that you have a daughter with mental illness,” he told her parents.

Emily was released yet again and returned back to school. But during her spring break, her behavior started to unravel yet again. She was rushed to a nearby hospital, where she began to seize.

While Emily convulsed in the next room, her father, Bill, thrust my article into the doctor’s hand.

“Read this. Now,” he commanded.

The doctor finally agreed to have Emily tested for the disease. As soon as she could be moved, Emily was air-evacuated to the University of Pennsylvania, where it was confirmed that she had anti-NMDA-receptor autoimmune encephalitis.

After we spoke, Bill Gavigan e-mailed me a video of Emily skating and with it a note.

“This is the first time I have seen her skate in two years,” he wrote to me. “Also, as we were reflecting this past weekend, since it was Mother’s Day, I remembered taking her in a wheelchair last Mother’s Day to the gift shop in the hospital to buy her mother a card, and she was unable to speak or walk. A year later, she is able to ice skate like you will see in this video. We continue to count our blessings.”

I opened the video, and there she was in her pink shirt and black leggings. She had a pink ribbon tied in her hair, which fluttered in the wind as she turned. She was so natural that she seemed just to float above the surface as she pirouetted, spinning and spinning on the ice.

Susannah Cahalan writes for The Post. Her book, “Brain on Fire: My Month of Madness” (Free Press), is out this week.

Thanks for the Email!

Back to the Article >

Share Selection