Looking back, Susannah Cahalan told a Yale audience recently, she is able to pinpoint the first sign something was amiss with her.
In 2009, at the age of 24, she had recently moved into New York City. Having convinced herself there was a bedbug infestation in her apartment, she spent thousands of dollars on exterminators, despite there being no evidence of any infestation.
She also experienced uncharacteristic feelings of inadequacy and lethargy, which soon morphed into rapidly cycling manic-depressive episodes, hallucinations, delusions, and paranoia.
In her talk before a packed audience at the Connecticut Mental Health Center auditorium, the New York Post journalist and author of “Brain on Fire: My Month of Madness” recalled her psychological deterioration and her her journey to find a correct diagnosis. The lecture was sponsored by the Poynter Fellowship in Journalism.
She cited, for example, her unsuccessful attempt to interview John Walsh, host of “America’s Most Wanted": “I noticed that, though I could understand what he was saying, I couldn’t translate it into word form. I couldn’t actually write down what he was saying,” she told her audience.
She also recounted a walk through Times Square, during which colors appeared aggressively bright to Cahalan. She remembers thinking: “I’m seeing everything in a sinister light now. Everything is dripping in terrible meaning.”
Cahalan visited a variety of doctors and received a series of misdiagnoses. Through individual research and talking with her psychiatrist at the time, the journalist diagnosed herself with bipolar disorder and was prescribed antipsychotics.
“I was very relieved to have a name [for the condition],” she remembered. “I felt like I belonged to this exclusive club of ‘creatives’ … but that was not to be the ultimate, accurate diagnosis.”
After a grand mal seizure — the first of a series of seizures — Cahalan “became a different person almost immediately,” she said, adding that the experience was a defining moment, which for her “marked the difference between sanity and insanity."
Since she has very little memory of what followed, Cahalan had to obtain medical records and consult witnesses to piece together the remainder of her story.
The “final straw” came when she nearly jumped out of the apartment window at her father’s house. Reading from her book, she recounted her first, full-blown hallucination: She had trapped herself in the bathroom to escape from her father, who she believed (incorrectly) wanted to harm her. She wondered, “Is he keeping me in here to kill me next?” This episode landed her in the hospital.
Cahalan described her initial days there as her “most acutely psychotic.” In an interview with a psychiatrist, she announced that she had multiple personality disorder and belonged in a psychiatric hospital. She told the audience, “I picked the most controversial diagnosis in the DSM [Diagnostic and Statistical Manual of Mental Disorders].”
The author shared a video clip of one of her psychotic episodes and paused on her panic-stricken face to explain the delusions and paranoia she was experiencing in that moment.
Operating under the assumption that Cahalan had schizoaffective disorder, the hospital placed her in a single room. Not long after, she was almost perpetually in a catatonic state. Neurological and autoimmune tests came back negative.
Finally, doctors performed a lumbar puncture, which showed a slightly elevated white blood cell count, but indicated nothing definitive. Dr. Souhel Najjar, an autoimmune disease expert, was brought into her case.
He performed a very simple test in hope that it would confirm his suspicion that she had encephalitis. He asked Cahalan to draw a clock. When she was finished, all the numbers were drawn on the right-hand side of the clock face. The doctor was excited to see these results and explained to her parents that this showed visual spatial neglect and indicated some kind of impairment on the right side of the brain.
Following a brain biopsy, Najjir was able to diagnose Cahalan with Anti-NMDA Receptor Encephalitis, which is not a psychological disorder but rather an autoimmune disease that occurs when antibodies turn on the brain and cause it to swell. She was the 217th person in the world to receive this diagnosis. “That was a very lonely number,” Cahalan said.
She described her difficult road to recovery, made especially difficult because she wasn’t able to communicate well.
Najiir told Cahalan that she would get 80% of her cognitive abilities back, but the journalist said she is still not sure whether she has fully recovered.
Cahalan summed up her experience with a quote from her book: “I wouldn’t take that terrible experience back for anything in the world; too much light has come out of my darkness.”