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Friday, February 15, 2013 / 8:35 AM

Back From the Brink: Susannah Cahalan talks about the illness that set her brain on fire

Back From the Brink: Susannah Cahalan talks about the illness that set her brain on fire
 

Even when she was an English lit major scribbling stories for the Student Life newspaper at Washington University, Susannah Cahalan had a voice: strong, witty, lively. It surprised no one when, just two years after graduation, she landed a job with the New York Post.

The surprise came when she lost her mind a year later.

She had a studio apartment in Hell’s Kitchen, a new boyfriend, a great job—and without warning, a cascade of symptoms that sent her into seizures—blood and foam spurting out of her mouth onto her mother’s Oriental rug—then hallucinations, paranoia, and catatonia.

It took a “Dr. House,” a neurologist at New York University’s medical center, to diagnose anti-NMDAR encephalitis—NYU’s first case, ever. He did a brain biopsy and started treatment immediately; six months later, Cahalan was back at work. Soon after, she started writing a book, Brain on Fire: My Month of Madness, published four months ago by the Free Press.

Cahalan will speak at her alma mater’s Assembly Series Monday at 5 p.m. in the May Auditorium at Simon Hall (home of Wash. U.’s business school). After her talk, a panel of professors from psychology, psychiatry, and anthropology will discuss her illness. By her neurologist’s estimate, nearly 90 percent of those suffering from autoimmune encephalitis go undiagnosed—and therefore untreated.

What were the first signs that something was amiss?

Bedbugs. Which I only now consider a symptom. Then there was numbness and migraines, then a kind of flulike lethargy. Then the mood changes, the seizures, the hallucinations, psychosis, catatonia.

You rattle it off so calmly!

I’ve so compartmentalized myself that it doesn’t bother me at all to talk about it. I only get emotional when I talk about other people’s stories. And when Steve’s in the room and I talk about the seizures. He gets so upset that I do, too. It must be mirror neurons.

Steve was, at the time, a new boyfriend. Points to him for staying by your side.

He’s a really solid, moral person. I think honestly it had less to do with me and his love for me—we hadn’t even been dating that long—and more to do with who he is as a person. He saw someone suffering. And he made a vow to himself that he was going to come see me every day.

You weren’t really even “there” by the time you reached psychosis and catatonia—you have no memories from that month, right?

I do remember the hallucinations. I can see myself on the television because my father killed my stepmother. I was bothered by that for a very long time—that I remembered my hallucinations and nothing else. Then I talked to an expert in schizophrenia, and he said it’s because they have such high emotional content.

Is it disconcerting to find out from other people just how far out of your mind you were?

It’s just bizarre. When you’re a journalist, there’s some distance, and here you are talking to someone about yourself, and you can’t go off the record. I’m the only one capable of getting my truth, and I wasn’t there. So I’m piecing together other people’s accounts.

The brain’s more fragile than we realize.

Before this disease, I didn’t even know an NMDA receptor existed in the brain. You mess with this little receptor, and you change everything that is fundamental about yourself. I am not the kind of person who is going to hit and punch nurses. But when you mess around with these receptors you never heard of, all of a sudden you are that person. “Fragile” is very accurate. Something you have no control of can change everything you value about yourself.

I understand that the median age this disease strikes is 20, that it strikes more women than men, that it’s an inflammation of the brain. But exactly what causes it?

They don’t know. Likely a combination of genetic inclination—for some reason my body wanted to make these bad antibodies, and somehow those bad antibodies were able to cross the blood-brain barrier. And there was likely some environmental trigger. Which could be anything.

Your father cried and prayed—is he normally that demonstrative?

He’s not! He’s the kind of person who, when you hug him, he pats you on the back. But this changed him a lot.

Has it left you shaky? I’d be constantly afraid it would come back.

A friend who’s a psychiatrist at Duke University, her son had what I had. She keeps telling me, “You need to go to trauma therapy.” But I think talking about it so much is my therapy. I did have some numbness in my hand a couple of months ago, and I freaked. I was typing, and my left hand wasn’t going as fast as my right. I think there is something residual, I’m weak on my left side. But I basically have something like carpal tunnel—standard, for a reporter.

 

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