Because I had been the only person ever to be diagnosed with anti-NMDA-receptor autoimmune encephalitis at NYU, I had felt as if I was in a rarified group of the walking wounded without any compatriots with whom to share war stories. I was wrong.
Although anti-NMDA-receptor autoimmune encephalitis is rare, it is one of the more than one hundred different kinds of autoimmune diseases that afflict an estimated 50 million people in the United States, a staggering figure that has more than tripled in the past three decades.58 An alarming majority of autoimmune diseases—around 75 percent—occur in women, affecting us more than all types of cancer combined. Autoimmune diseases are most likely the number one cause of disability in women of all ages. There are multiple theories about why women are so disproportionally affected, ranging from genetic, to environmental, to hormonal (most women are of childbearing age when they are diagnosed), to the fact that women’s immune systems are more complicated (they need to identify and safeguard fetuses, which are half-foreign entities, during pregnancy), and with everything more complex, malfunctions are all the more severe. For now, it’s just one more riddle in a series of question marks.
Dr. Dalmau and his lab have also identified other receptor-seeking autoimmune diseases that occur in the brain, making the anti-NMDA-receptor variety still rare but not unique. Now antibody-mediated autoimmune diseases have become a bonafide group of syndromes. Dr. Dalmau’s lab has identified six other types of antibodies that target various receptors in the brain, adding to the NMDA-receptor-preying kind, which struck me. This figure is growing. Dr. Dalmau estimates that when all is said and done, there could be twenty or more. These discoveries finally will give names to diseases vaguely referred to as “encephalitis of an unknown origin,” or “psychosis not otherwise specified,” or not given any designation at all.
So it was no wonder that after the
Many of the stories that I heard from that time were similar to my own, if not more harrowing. The words of people I spoke with kept me up at night:
I live with that constant refrain—not of self-pity but the real question of why my body decided to turn on itself. Then again, why does this happen to anyone? There are now thousands of cases of anti-NMDA receptor autoimmune encephalitis and many that have not ended well: an elderly woman who passed away because she had been misdiagnosed with a urinary tract infection; a woman who was pregnant when her symptoms progressed had lost her baby; several girls who had their ovaries removed when the doctors could not find a teratoma and the immune suppressants that had worked wonders on me didn’t help them.
Almost everyone I spoke to had experienced delusions and hallucinations: a music teacher saw and heard a full symphony outside her window; a young woman called out for a priest, requesting an exorcism because she was certain she was inhabited by the devil; another woman my age hated herself so much during her recovery that she ripped out her hair and cut her arms. Paranoia, especially about the men in their lives, was also a common thread. A middle-aged woman believed that her husband had fathered a baby with a neighbor; a young teenager was convinced that her dad was cheating on her mother. One twelve-year-old I spoke to tried to jump out of a moving car; another woman had an obsession with grapes (like my fixation on apples).
All the people I spoke to had lost themselves. And not everyone had found herself again. Some would never be as smart or funny or animated as before the illness.
There were even calls from people who had been diagnosed with schizophrenia and were desperate for any other answer. My story gave them hope, but some of these people scared me with their persistent paranoid phone calls.
“You know they’re listening to us,” one older woman said.
“I’m sorry?”
“They’re bugging my line. So I can’t say much.”
“I hear voices,” another person said. “There are people out to get me. Just like you.”
One woman who sounded manic, her pressured speech hard to understand, called several times a day, trying to arrange a meeting so that I could diagnose her myself.
“I’m not a doctor, but you should contact these people,” I said, providing these callers with the list of doctors who had treated me. But the truth was, the only difference between those suffering from schizophrenia and me was that I was cured. Like these people, I knew exactly what it was like to be caught in the prism of your own fractured psyche.
Survivor’s guilt as a kind of posttraumatic stress disorder (PTSD) is common—a study indicates that 20 to 30 percent of survivors develop it—and it has been documented in those with cancer and AIDS, as well as war veterans.59 I can sincerely relate to this feeling, even though in some ways, my problem is the opposite of PTSD: whereas most PTSD sufferers are desperately trying to escape their memories of the original trauma, I have none.
But still the guilt remains, especially when I speak to families who cannot help but feel resentful. There was a newlywed who called me about his wife; he had e-mailed me on Facebook, and I gave him my number. “How do you know you won’t get sick again?” he asked, aggressively.
“I don’t know. I really can’t answer that.”
“How can you be sure?”
“I can’t be. This is just what the doctors are telling me.”
“And how come you got better while my wife is still sick, even though she was diagnosed before you?”
“I, I don’t know.”
Two weeks later, he called me back. “She’s dead. She died last week. I thought you should know.”
There had been no miracle diagnosis for his wife. And there is not a miracle diagnosis for everyone. There doesn’t seem to be any logic to it; it’s the luck of the draw, as unfair and callous and, frankly, terrifying as that may sound. Even if the disease is properly treated, there is still about a 25 percent chance that someone with it will be permanently disabled or die.
But there are many more interactions that I’ve had in the wake of this illness that have turned this terrible disease into some sort of gift—not one that I would bestow even on my worst enemy but a gift nonetheless.
I became close to a woman named Nesrin Shaheen, whose preteen daughter developed the illness around the time that I did and now works tirelessly to spread awareness, devoting countless hours to a Facebook page on anti-NMDA receptor encephalitis that helps hundreds of people navigate the lonely illness. In addition to Nesrin’s Facebook page, many other sites are devoted to spreading the word and connecting patients and families so that they don’t have to go through this ordeal alone.
The most affirming moment of my entire life—and to be able to say this with absolute certainty is just another example of how this disease has changed my perspective in positive ways—was when a man named Bill Gavigan called me in spring 2010.
“Is this Susannah Cahalan?” he asked breathlessly.
“Yes,” I said, taken aback. People usually did not say my name as if it carried such weight. He went on to tell me the story of his teenage daughter, Emily.
One day when she was a sophomore at a Pennsylvania college, Emily suddenly started speaking rapidly and became paranoid that pickup trucks were following her, communicating her whereabouts to each other on walkie- talkies. The next day, when they were headed to a Broadway show in New York, Emily became fixated on the cars around them. She insisted that they were being tailed, which so worried Bill and his wife, Grace, that they immediately turned the car around and headed straight to the ER. In the hospital, Emily’s paranoia intensified because the ER doctor reminded her of her high school history teacher, which convinced her that he was an imposter, an actor playing the part of a doctor—exactly what had happened to me with my father and the EEG nurse.
