It’s the stuff of nightmares: waking up disorientated in a hospital, with no idea where you are or how you even got there. But this is exactly what happened to Susannah Cahalan in 2009. And the young woman was even more terrified when she realized that even her doctors had no idea what was happening to her or how to stop it. But then, when dozens of specialists were left scratching their heads, one medic asked her to draw him something. What’s more, amazingly, this simple request would turn out to be the beginning of her road to recovery.
At the age of 24, Susannah Cahalan had the kind of life many young women would envy. The New York Post reporter had a great job, a dazzling social life, her own NYC apartment and a rock star boyfriend.
But Cahalan’s perfect life was turned upside down when she started to feel unwell. At first, she didn’t think it was anything serious; she just felt lethargic and slightly under the weather. But then the paranoia set in. She became convinced that her boyfriend was being unfaithful, and soon she was having full-on hallucinations. In fact, at one point she became so convinced that bedbugs were crawling all over her home that she insisted her entire apartment be fumigated – despite reassurances from the exterminator that there was nothing there.
Cahalan’s symptoms worsened to the point where daily life became difficult. The Times Square lights, for example, induced throbbing migraines, while everyday objects suddenly seemed sinister. In fact, Cahalan later wrote that it seemed as if the walls at work “were breathing visibly, inhaling and exhaling all around me.” And then, at her boyfriend’s apartment, she suffered a seizure that, alarmingly, caused her to foam and bleed at the mouth. Hence, she went to see a neurologist, and yet he could find nothing wrong.
When a neurological cause couldn’t be determined, Cahalan was referred to a psychiatrist. And because the 24-year-old was exhibiting both manic and depressive episodes, she was given anti-psychotic medication and sent her on her way. But her family refused to believe that there wasn’t anything more to it.
As a result, the family sought a second opinion with a renowned New York neurologist. This time, Cahalan was diagnosed with “alcohol withdrawal syndrome,” given more medication and told to tone down her social life. But none of it ever really added up. Moreover, the symptoms continued to get worse.
The seizures intensified, and Cahalan became severely delusional as her hallucinations escalated. Her mood, too, could change in an instant, and she became increasingly unable to hold down her job. Finally, under pressure from her parents, doctors admitted her to an epilepsy unit at the New York University Hospital, where she would rack up a million dollar bill.
Despite the expensive medical care, however, Cahalan’s behavior went from bad to worse, and it had some of the country’s most experienced doctors completely baffled, too. Indeed, her paranoia reached new heights; as she told NPR Books, “I started acting very psychotic. I believed I could age people with my mind… and I believed that my father had murdered my stepmother.”
Cahalan grew violent, before gradually slipping into a trance-like state where she stopped interacting with anything or anyone. In fact, she recalled one visitor who thought she was acting like an extra from “a zombie movie.” Doctors, meanwhile, believed she was headed for a nervous breakdown, and they prepared to transfer her from the epilepsy ward to a psychiatric unit.
Cahalan’s boyfriend and family refused to give up, however. In fact, her boyfriend Stephen had looked into her eyes and insisted, “She’s still in there. I can see her. She’s still there. I know it.” All evidence, though, pointed to the contrary. The young woman was becoming increasingly difficult to control, kicking and lashing out at anyone who came within range. But then, just as things seemed hopeless, a new doctor was assigned to her case.
Dr. Souhel Najjar had an idea. Instead of sending Cahalan for more scans, tests and treatments that would ultimately cost tens of thousands of dollars, he simply handed her a pencil and paper. And with it, he asked her to sketch a simple clock face.
What Cahalan drew, however, was a circle with the numbers one to 12 squished into just one half of the clock. And it was all the proof Dr. Najjar needed that Cahalan’s symptoms were neurological and not psychological.
Cahalan was sent for a biopsy, and the results backed up Dr. Najjar’s theory. Why? Because it turned out that the young reporter wasn’t on the verge of a psychiatric breakdown. What she had, in fact, was a very rare and potentially fatal condition called anti-NMDA receptor autoimmune encephalitis. Essentially, her brain had swollen to a dangerous level.
Cahalan is incredibly lucky to be alive. She was just the 217th person to be diagnosed with the auto-immune condition, which had itself only been discovered by specialists two years earlier. And the young woman was alarmingly close to losing everything to the potentially lethal form of encephalitis. In fact, in her memoir she writes that the disease was detected in the stage that “precedes breathing failure, coma and sometimes death.”
After the diagnosis, Cahalan was placed on a combination of immunoglobulin therapies and steroids. And although it was a quite simple treatment plan, she described her recovery to Psychiatric Times as “a protracted and emotionally painful process, but a necessary one.”
Thankfully, Cahalan went on to recover fully from her ordeal. And she’s one of the lucky ones: 7 percent of those diagnosed with anti-NMDA receptor autoimmune encephalitis will die even with treatment, while those who survive are often left cognitively impaired. Moreover, it is now thought that the condition has gone undetected in many others, who have perhaps been institutionalized or misdiagnosed with another condition.
There was something missing, however, from Calahan’s recovery: her memories from the time she was in hospital. And so the young reporter rolled up her journalistic sleeves and began collecting the jigsaw pieces of her forgotten experiences. She started by reading her medical notes and interviewing doctors, family and friends.
And in piecing together her missing memories, Cahalan put pen to paper once more, this time to produce a memoir entitled Brain on Fire. There is one thing, however, that the journalist recalled above all else about her experience. She wrote, “What I remember most vividly is the fear. The fear and anger.”
As she continued her research, it became apparent to Cahalan that the symptoms of her illness were incredibly similar to those of several psychiatric diseases. And her experience raised important questions about how easily neurological conditions can be misdiagnosed and what, even, mental illness is.
Cahalan feels robbed of part of her life and haunted by an alternate, undiagnosed outcome. She is, however, fully recovered and is now back to work at the New York Post. And, perhaps most importantly, she works alongside Autoimmune Encephalitis Alliance to continue to raise awareness of the illness.