Interviewed by Sue Leonard.
Published in The Irish Independent Colour Magazine on 23rd March, 2013
At 28, Susannah Cahalan is one of life’s golden girls. Gorgeous looking, she has an enviable job on the New York Post, and comes from a privileged background. She’s great company too; and clearly talented. Yet just three and a half years ago, Susannah lost her sanity, and almost lost her life.
It was 2009 when Susannah displayed signs of bipolar disorder. Finding work increasingly difficult, she suffered severe mood swings, and then, a terrifying seizure landed her in hospital.
“That early stage was really scary, because I still had my faculties,” says Susannah on a visit to Dublin. “I could think, ‘this is not me.’ I had no control over my emotions, and I would see myself doing things that were outside my normal behaviour.”
One night, staying at her father’s house, she became convinced that her father was trying to kill her stepmother.
“I could ‘hear’ him beating her up. I was convinced that he had murdered her. I remember feeling, I have to get out of here. I wanted to jump out of the window. I remember all those hallucinations. Those were hard.”
She was, eventually, admitted to the NYU Hospital’s epilepsy ward. Her condition deteriorated into psychosis and then catatonia. She ‘lost’ a month. Susannah was seeing the best doctors money could buy. She had numerous tests, all of which came back negative. And nobody could come up with a definitive diagnosis.
There were constant threats that she should be transferred to a psychiatric ward. One psychiatrist diagnosed Schizoaffective Disorder. And meanwhile, Susannah, making constant attempts to escape, was convinced that everyone on the ward, and on TV, was talking about her.
Then, deteriorating further, her speech slurred, and she became almost like an animal, drooling, and letting her tongue hang out of the side of her mouth. Her short term memory was obliterated.
“I watched the same film over and over, thinking it was for the first time. I repeated questions, time and again. That was so annoying for my boyfriend, Stephen,” says Susannah. “But he never doubted me. He could see that I was ‘in there’ somewhere. We’re still together. He’s with me, here in Dublin.”
Her fortunes changed when a certain Dr Najjar was brought in on her case. He asked her to draw a clock, a standard neurological test, and she wrote all the numbers on the same side. That proved that one side of her brain was ‘on fire.’ After performing a brain biopsy, he was able to give a diagnosis. Susannah had Anti-NMDA receptor autoimmune encephalitis; a condition only discovered in 2007.
“I was only the 217th person to have been diagnosed with it,” says Susannah. “And if it took so long for one of the best hospitals in the world to diagnose me, how many people were going undiagnosed, and condemned to life on a psychiatric ward or nursing home?
“I would not have got a diagnosis without my parents to fight for me, when I couldn’t fight for myself,” she says. “My condition resembled demonic possession.”
On the right treatment, her condition, slowly, improved. But she was unrecognisable. When her brother saw her for the first time, he described her as ‘a grotesque hybrid of an elderly woman without her cane and a toddler learning to walk.’
Susannah returned to work at the New York Post seven months after her initial seizure. The staff, good to her, broke her in slowly.
“They were wonderful to me,” she says. “I’d always been like the little sister. They saw me grow up. I worked there from when I was 17, and working in my summer, and Christmas breaks from College.”
She was still far from well. But less than a month after she’d returned to work, an editor asked her to write a first person article describing her experience. She contacted various doctors, including one Dr Bailey; a top neurologist who’d seen her near the start of her illness.
“He’d said my condition was due to too much alcohol,” says Susannah. “He told the doctors in NYU that I drank two bottles of wine a day. Yet I’d told him I drank two glasses. When I called him he said he didn’t have time to speak to me He was very dismissive. I remember hearing the dial tone when he’d hung up and feeling shocked by the way I’d been treated.
“Later, I met a girl with the same condition as me. Her parents said, ‘Thank goodness for Dr Bailey. He’d said to them, ‘you should check out this anti auto immune encephalitis. He said he’d read about it in a medical journal; not that he’d misdiagnosed a patient who had it.”
She’s never heard from him again. Yet she changed his name in the book to protect his identity.
“I’m not out for revenge. He’s considered one of the best neurologists in the country. He’s probably saved thousands of lives. I don’t want to ruin his reputation on one case. He’s old. He’s arrogant, and doesn’t have curiosity anymore. He saw my job profession, and in his mind, journalism meant booze.”
The article caused a sensation. Susannah won awards; Dr Najjar’s reputation was enhanced, and, from the ensuing media frenzy, a huge number of people managed to get a diagnosis; some from shoving Susannah’s article in front of their doctor’s noses.
“That feels so good,” she says.
It helped her on a personal level, too.
“People at work were confused as to what had happened. I’d gained 40 lb with the steroids. I had this big moon face. I was very slow. My speech was slow. I was aware that I was boring. People had thought, ‘did she have a breakdown?’ Now it was clear to them.”
After the success of the article, Susannah decided to write a book. She studied immunology textbooks, and neurological journals; she watched seminars, and conducted interviews with doctors; with nurses involved in her case; with friends who’s stuck by her; and with her family; trying to piece together all the time that she’d lost. Then she sold the proposal.
“That weekend, I thought I was finally ‘back.’ I went to my cousin’s wedding in New Mexico, and I was able to make small talk and not be nervous about it. I now realise I’m a terrible judge of my condition. I wasn’t completely well, back then. I was still recovering all the time I wrote the book. A scout, who saw my proposal, said my writing, in the book, was so much better than in the proposal. I’m pretty sure I’m back, now!”
There have been thousands of people diagnosed with Anti-NMDA receptor autoimmune encephalitis since Susannah’s diagnosis – and research has uncovered other, similar conditions.
“Everywhere I go, there seems to be another person who knows another person with it. I’ve been contacted by several people in Ireland. I’ve had this situation, so often, where someone connected to someone I meet, like a radio producer, has it. It can’t be that rare, it’s just undiagnosed.
“Yet you feel so alone. And you feel ashamed. I did a launch of my book in London with the Encephalitis Society. One man in the audience, diagnosed in 2011, said he felt desperate, not knowing what it was. He said, ‘I googled it and your picture came up. And there was this girl with red lipstick.’ He said, ‘I’m going to be fine.’ It was so amazing to hear that.”
Many people with her condition, don’t get their full function back. And there is a small rate of reoccurrence.
“I live with that fear,” says Susannah. “It doesn’t make me change the way I live. It doesn’t make me want to travel less, or do less. But a couple of months ago I had pins and needles in my hands. I immediately called Dr Najjar, and I had 6,000 dollars worth of crazy tests, and it ended up being from too much typing.
“When you’ve had a situation where you doubt your sanity, and are insane, it keeps you open to doubting your sanity. That’s a very uncomfortable thing.”
If she had a magic wand, would she turn back the clock and magic the experience away?
“I’ve thought about that, and no I wouldn’t. I’ve been able to help people, and it has changed me. I have a calling, and I didn’t before.
“You go into journalism for a variety of reasons, and one of them is because you want to help people. As a tabloid journalist, I typically don’t; you can end up hurting people. This is such an amazing affirmation. I have discovered what it means to do positive things with my work. Now, when I talk to people who have been through a trauma, I can really relate.
“When you think about it, I was only the 217th person to be diagnosed with Anti-NMDA receptor autoimmune encephalitis; how incredible that I was a journalist, and was able to tell my story. All that crazy training, seeing people who don’t want to talk to you, prepared me so well. I could not have written the book otherwise. It’s as if it was meant.”
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© Sue Leonard. 2013