The woman was hospitalized in a mental hospital

Susannah Cahalan was 24 and living the New York life that Sex and the City fans dream about. She was a tabloid reporter for New York Post. She had a musical lover, a gadabout social life, and a cubbyhole flat.

Hallucinations, convulsions, personality disorder, psychosis, and catatonia followed. No Carrie Bradshaw. “When I talked, my tongue twisted, drooled, and hung out of my mouth like an overheated dog.”

Medically unknown for a month. First neurologist said she was fine. Bipolar disorder was diagnosed and medication was provided. A second neurologist diagnosed “alcohol withdrawal syndrome” and ordered medicine. No diagnosis fit. Nobody knew when she was admitted to NYU hospital. One buddy described her as “zombie movie”-like.

Cahalan has changed since then. She’s back with red lipstick, drinking coffee at a hipster cafe, considering her good and terrible luck.

What’s up? When would she recover? “I didn’t even know who ‘I’ was anymore,” she writes in Brain on Fire, a survivor’s book featuring an unreliable narrator who can’t remember complete episodes.

The Susannah Cahalan who was hospitalized to NYU’s epilepsy ward and felt people were talking about her on TV was not the Susannah Cahalan she knows now. Her book research involved forensics.

“Being a reporter gave me tools for writing about myself, but it was a detached process.

“I started by gathering information. So I collected my medical records and made a timeline of events, including my brain tap, biopsy, etc. I did self-interviews. So I have objective data, but major gaps.”

“What I remember most vividly is the terror,” she recalls. Fear and anger.” She carried on as normal, even when the neon signs of Times Square brought on a blinding migraine and the walls of her office “were breathing visibly, inhaling and exhaling all around me.”

Finally, a blood-and-foaming-at-the-mouth seizure led her to see a neurologist, who couldn’t find anything wrong and sent her to a psychiatrist.

The psychiatrist saw a psychiatric disorder and prescribed an anti-psychotic. Only because her family didn’t believe it did she see a second neurologist, “one of the best in the city,” who told her to “lay off the partying.”

Pressed by her family, he reluctantly agreed to refer her to the epilepsy ward at NYU hospital.

“I was in one of the best hospitals in one of the best cities in the world, and they still didn’t know what was wrong with me,” Cahalan says (She grew up with her mother and stepfather in Summit, New Jersey, “an affluent Wasp suburb”.

By her side was her banker father, who lives in a “magnificent Brooklyn brownstone”.)

The hospital bill for her care surpassed $1m, yet $20,000 treatments were prescribed “haphazardly.” Everyone said, “Maybe it’s this.” Someone would say, ‘Well, maybe it’s this,’ and prescribe me another medication. Everyone seemed clueless. These are top-notch doctors, not Joe Schmoes.

Cahalan learnt the hard way that much about the brain is unknown. “We’re just beginning to comprehend how the brain and body function together. We don’t comprehend the brain or psychiatric diseases. Cases like mine are a glimmer of hope.

Because she didn’t have bipolar disorder. After seeing dozens of doctors, each as stupid as the last, a new doctor entered the scene: Dr. Souhel Najjar. Gnawing. And jerking. Her family was desperate, but hoped.

Stephen remarked, “I can see her. She remains. Najjar asked her to draw a clock face, and she sketched exactly half of one, “solid evidence that the right side of my brain was inflamed.”

Najjar “sat on my bed. He told my parents, “Her brain is on fire… I’ll do everything I can for you.” Maybe the scene has been embellished, but for Cahalan, it was her knight-in-shining-armor moment, with Najjar appearing as a cross between Hugh Laurie in House and Richard Gere in An Officer and a Gentleman. “For a moment, I seemed to come alive,” he told me. I’ll always regret not remembering this vital scene.

Cahalan was only the 217th person to be diagnosed with anti-NMDA receptor autoimmune encephalitis, a brain inflammation caused by an unknown toxin or virus.

The terrifying thing after the event is how close she came to not getting the diagnosis. They caught it at the catatonic stage that “precedes breathing failure, coma, and sometimes death.” She was lucky.

The brain biopsy enabled the right treatment to be found, and she gradually started to recover. But without it, who knows? “It’s hard to say.

Since the condition was first diagnosed in 2007, there is no natural history, yet I would have ended up in a psychiatric facility. They favored it. Nursing home. I could’ve died.

Even with treatment, 7% of individuals die. Others are profoundly cognitively disabled. I suppose there are people who lived in institutions their whole lives and were never diagnosed.

Her misfortune was getting sick. Her fortunate luck was meeting someone who’d read the book. She believes her case has far-reaching implications.

It’s all neurological. We separate brain problems into neurological and psychiatric because mental illness is stigmatized.

Imagine treating cancer patients that way. Because your personality and behavior change, you’re categorized differently.”

Najjar, associate professor of neurology at NYU medical centre, estimates that 90% of those suffering from the disease in 2009 went undiagnosed. Hardly anyone has access to $1m worth of medical investigation, while the number of people diagnosed is “in the thousands”

As little is understood about the brain – “a black box,” as Cahalan calls it – it’s also possible that mental illness is just illness.

After writing about her experience in the New York Post, Cahalan has been inundated with emails and messages from people who think they, or someone they know, has, or had, the disease. Or who have other psychiatric conditions they now believe may be curable.

“I wrote an essay and spoke on talk shows to spread the message. My writing caused diagnoses. Don’t give false hope, though. I know this but can’t reconcile it.

The illness affects mostly young people and seems “evil” to the untrained eye, she writes. Her partner “can’t watch The Exorcist” because it’s too real.

Writing helped her “regain control.” Something beyond my control took over my life and robbed me of my 24- and 25-year-old self.

“When I look at photos of me ‘post-‘ vs ‘pre-,’ there’s something altered – or gained, I can’t tell – when I look into my eyes,” she says.

She’s one of “the lucky ones” who went to the dark side of the brain and lived.

“Some people want to live in other times. Nope. I’m glad to be alive. If I’d had this before 2007 or been born at a different period, I wouldn’t be here.


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