Brain on Fire: My Month of Madness

Emily admitted herself into a psychiatric ward, where she stayed on observation without any contact with her family for seventy-two hours. She was put on a litany of mood stabilizers and antipsychotics and remained in the ward for another two weeks before she was released with the diagnosis of “psychosis, not otherwise specified,” medical jargon for “we have no clue.”

Although she was heavily sedated, she insisted on returning to school. But then her parents received a call from the dean of students, expressing grave concern over Emily’s erratic behavior. She returned home, and for the next few weeks was shuffled back and forth between her parents’ house and the local psychiatrist, until she was admitted to the Psychiatric Institute of Pennsylvania for three weeks. Bill compared the experience to the movie One Flew Over the Cuckoo’s Nest. Though they did not have a diagnosis yet, the psychiatrist told her parents that he was leaning toward schizophrenia, even after other neurologists had offered a possible diagnosis of multiple sclerosis. The social worker there advised them to sign her up for social security disability because “she’s never going to be able to work.” Bill refused to believe that and threw the social security forms in the trash after she left.

It was around this time that Bill’s sister, Mary, saw me on the Today show (after a producer who saw the Post piece invited me on for a segment). She sent the video to Bill, who passed it and my Post article along to Emily’s psychiatrist.

“She didn’t have seizures,” said the psychiatrist, pointing out the discrepancies between my case and Emily’s. He seemed genuinely insulted by the implication that he had missed something. “You have to come to terms with the fact that you have a daughter with mental illness.”

After twenty-one days at the institute, Emily went through outpatient treatment and eventually returned to school yet again, completing the semester with good grades even though her parents still believed she wasn’t 100 percent well.

It appeared that she had overcome the problem, whatever it had been, until she came home for spring break, when her physical and cognitive issues suddenly got dangerously severe. Bill noticed that she could no longer solve simple math problems; Grace watched her daughter try to eat a pint of ice cream, almost unable to hold her spoon. Then, suddenly, she went from speaking too fast to not speaking altogether.

She was rushed to the nearby hospital, where the doctors informed Emily’s parents that an MRI from a year ago had shown inflammation, a fact that had never been shared with the Gavigans before. As the doctors prepared for an aggressive treatment of IVIG, which helps with inflammation, Emily developed a blood clot in her brain, which caused her to seize for an hour and a half.

While Emily was convulsing in the next room, Bill thrust my article into the on-call neurologist’s hands.

“Read this. Now,” he commanded.

The doctor read through it right in front of Bill, placed it in his pocket, and agreed to test her for this rare autoimmune disease.

As soon as she could be moved, Emily was air-evacuated to the University of Pennsylvania, where Dr. Dalmau’s colleagues diagnosed her and began treatment for anti-NMDA-receptor encephalitis. Through an aggressive regimen of steroids and chemotherapy, Emily has returned full time to college. She is 100 percent healthy now and in 2012 finished her final semester of college.

On the phone to me, her father said, “I don’t want to be, well, I guess there’s no way other than to be very dramatic about it. But I’m not kidding, if we didn’t have that article to hand to the doctor, she’d be dead.”

He also sent me video footage of her skating with a note: “I thought you might like to see Emily skating. This is the first time I have seen her skate in two years. She is in the middle of the ice when the video starts. Also, as we were reflecting this past weekend since it was Mother’s Day, I remembered taking her in a wheelchair last Mother’s Day to the gift shop in the hospital to buy her mother a card, and she was unable to speak or walk. A year later, she is able to ice skate like you will see in this video. We continue to count our blessings.”

I clicked open the cell phone video and watched her. Emily wears a pink skirt, black leggings, and a black shirt, with a pink ribbon tied in her hair. She’s so natural on the ice that she seems to float just above its surface as she pirouettes, spinning and spinning in the center of the rink.

CHAPTER 49 HOMETOWN BOY MAKES GOOD

The Post’s “Month of Madness” article changed not only my life but Dr. Najjar’s as well. After its publication, Dr. Najjar invited me to his house in Short Hills, New Jersey, about a five-minute drive from my mom’s Summit home. He answered the door and introduced me to his three teenage children and his wife, Marwa, a lovely woman with fair skin and light hair, several years younger than her husband. They met at the New York Infirmary Beekman Downtown Hospital (now part of NYU) in 1989, where he studied neuropathology and she worked in the lab. One afternoon, the shy Souhel made a joke in Arabic, and to his surprise, she laughed. She didn’t look Middle Eastern, but when he introduced himself, he found that she too came from Syria.

Marwa offered me tea as we sat in their living room by a grand piano. Midway through the conversation, Dr. Najjar mentioned his father, Salim Najjar, and seemed proud to share his incredible story.

Salim had grown up in an orphanage. His mother, who worked long hours at a nearby hospital making lab coats for doctors (coincidentally), had to give Salim up as a child when his father suddenly passed away. Alone, she could not support him on her meager income. Salim, who had so stressed education for his own sons, had never graduated from high school, but through sheer will and a tendency toward perfectionism, took up the construction trade and reached the pinnacle of his industry when his company built the city’s central airport, Damascus International. But none of this compared to his son’s successes overseas.

“My father saw your article. It was translated into Arabic in multiple papers. Not just one,” Dr. Najjar said. “There were, I mean, tears.”

“No way,” I said.

“Yeah, he had it framed and everything.”

After my article ran, the Syrian ambassador to the United Nations had reached out to Dr. Najjar to congratulate him on a job well done and then sent my Post article to SANSA, a Syrian news agency. Overnight, every news outlet there covered the story of how a Syrian boy had become a miracle doctor in America.

“Remember, this is the dunce. The class dunce who couldn’t do the work.” Marwa smiled. “The hometown boy makes good. You made it, baby, way to go.”

Later that same year, Dr. Najjar was named one of New York Magazine’s best neurologists in the country.

CHAPTER 50 ECSTATIC

By the time the Post published my piece, most people who knew me would have agreed, “Susannah is back.” I had returned to the Post full time, Dr. Najjar and Dr. Arslan had finally taken me off all medications, and I had even navigated the treacherous waters of live television in early 2010 when I was a guest on the Today show to discuss my illness.

Since my mom and Allen had decided to sell their Summit house, Stephen and I moved in with each other far sooner than either of us had anticipated. We both skirted the issue for months as I scrolled through ads looking for a studio apartment that would fit my tight budget. After a few weeks of searching, it became clear that I couldn’t afford to live alone. I dreaded bringing up the option to live together for fear that I would be pushing him to that next relationship step too soon. And I felt it wasn’t fair to press him: How could he say no? But when I impassively