A million-dollar medical mystery
She thought she had mono. Then she decided she was bipolar. To her disgust, a famed New York City neurologist told her that she simply worked too hard and drank too much.
Susannah Cahalan’s mix of Google-search self-diagnosis and hit-and-miss expert opinion might have been comical if her situation hadn’t been so dire. At the age of 24, Cahalan, a reporter for the New York Post, began feeling less and less herself, then had a seizure, and then ended up in the hospital for a month, out of her mind for most of that time, while a small army of doctors and medical researchers tried to figure out what was wrong with her.
“It was one of those things that wasn’t completely obvious at first,” Cahalan says, remembering the onset of her mystifying disease during a call to the apartment in Jersey City she shares with her boyfriend Stephen, one of the heroes of Brain on Fire: My Month of Madness, her book about this harrowing experience. “Maybe if I had been working a more stable or less exciting job, I would have been more aware of what was going on. But because I was working at the New York Post and there are so many highs and lows to journalism, I wasn’t aware of the fluctuations.”
Stephen (her boyfriend of just six months at the time and a colleague at the Post, where she had begun working as a “copy kid” at 17) and her estranged parents, however, had become increasingly alarmed by her behavior just before her seizure. Later they would all become key informants as Cahalan tried to piece together what had happened to her during her month of madness.
“It’s so hard for me to get to that person again,” Cahalan says. “I did a lot of yoga trying to access these hallucinations and these lost memories. . . . I wrote by hand, which I thought would maybe help me better access these things. I do remember things, but I don’t know if it’s because I’ve spent so much time writing about them that I’ve created these memories.”
"People who don't have a diagnosis have to be their own advocates. It's important to question medical authority."
So Cahalan’s efforts to write Brain on Fire became an attempt both to reconstruct how she became the crazy person she briefly was and to understand the science that led eventually to a successful diagnosis. Early drafts of the book, Cahalan says, were very “science-y.” The published book tends—reluctantly, she says—more toward memoir. Readers will likely find it a swift read, an intriguing mix of scientific detection and personal story. Cahalan includes excerpts from her medical records, from videos of her bizarre behavior in the hospital, and from her follow-up interviews with the two doctors at the University of Pennsylvania—Dr. Souhel Najjar and Dr. Josep Dalmau—who cracked her case.
Diagnosing her illness required a battery of sometimes redundant tests including CAT scans, blood tests, MRIs and a gruesome-sounding brain biopsy. Eventually, Cahalan became only the 217th person to be diagnosed with anti-NMDA receptor autoimmune encephalitis, a rare form of autoimmune disease.
Cahalan says one of her hopes is that Brain on Fire will in some measure help people with undiagnosed conditions and raise awareness about autoimmune diseases. “The brain gets all the attention,” she says. “But when I was researching the science for the book, I realized we are just at the beginning of understanding how important the immune system is. Autoimmune disease is an amazing, emerging field of study. Right now 50 million people in the United States have an autoimmune disease. They’re especially common in women, which is a mystery. The research that’s being done now is basically blurring the lines between immunology, neurology and psychiatry. It’s very exciting.”
Treatment for Cahalan’s disease was considered experimental at the time. It involved a regimen of nearly 20 intravenous immunoglobulin (IVIG) injections at $20,000 a pop. The total cost of her hospitalization and treatment? Something to the north of $1 million, she says.
In the final section of Brain on Fire, the section Cahalan found most challenging to write, she describes her long recovery and reflects on the physical and emotional challenges she faced after she left the hospital. On the plus side, she has grown closer to her father, who was distant from her after her parents’ bitter divorce. For the length of time she was in the hospital, her parents united to become her chief advocates. “People who don’t have a diagnosis have to be their own advocates. It’s important to question medical authority. I couldn’t be my own advocate in the hospital because I couldn’t be there for myself. But my parents were.”
Cahalan’s boyfriend Stephen was her “rock in the hospital. The fact that he came every day when we’d only been dating about six months was amazing.” But trouble loomed when she came home to recover. “I was dead set on moving ahead. I was getting better. I was back at the Post. Everything seemed fine, but he knew I still wasn’t 100 percent. It was a scary experience for him. I think it changed him and he became a different person. Now it’s been three and a half years since I was in the hospital and we’ve worked that out.”
Still, the question of how fully she has recovered remains. When her doctors finally reached the correct diagnosis, they told her that treatment would bring her back to about 90 percent of normal.
“It’s hard for me to say if I’m 100 percent recovered,” Cahalan says. “I know I’m different from the person I was before and I know that has something to do with my illness because it was a huge life experience that I think about every day. But I was 24 then, I’m 27 now. I don’t know how much of my change is due to getting older and being in different life circumstances and how much of it has to do with surviving this illness.”