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.
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 broached the subject with him he said, without hesitation, “That’s what I assumed we’d be doing.”
Still, Stephen was privately anxious about taking on the role of caregiver, despite how well I was doing. If something happened to me under our shared roof, he would be responsible. But he decided to press on: I was too broken, financially, emotionally, and physically, to live alone, and he wouldn’t have wanted us to be separated anyway.
So now you could add the grown-up step of living with my boyfriend to the list of reasons showing that I was “back.” But in reality it took several more months for me to assuredly say that I felt comfortable in my own skin again, when I finally could rely on myself not to wince when I ran into ex-boyfriends or cower in the back of a spin class.
This eureka moment happened quietly, more than a year after my diagnosis, when I was visiting my extended family in Santa Fe, New Mexico, for my cousin Blythe’s wedding in June 2010. At that wedding, unlike the one I had attended early in my recovery, there was no longer a chasm between the person I was inside and what people around me saw. I felt in control and at ease; I no longer struggled for the right words, didn’t have to push myself to make small talk, and had reclaimed my old sense of humor.
Because they had almost had to mourn me, friends and family feel relatively comfortable speaking openly about their relationships with and impressions of me. Because of this, I often felt like Tom Sawyer attending his own funeral; it’s a strange kind of gift. Two words keep repeating: outgoing and talkative. Almost every single person uses some variation of those words to describe me. I had never really known how much these terms had defined me and how jarring it must have been when I had suddenly become neither of those things.
I know that this new Susannah is a lot like the old Susannah. There are changes, but it’s more like a step to the left than an overhaul of my being. I talk fast again, can do my job with ease, feel comfortable in my own skin, and recognize myself in pictures. However, when I look at photographs taken of me “post,” versus pictures of me “pre,” there is something altered, something lost—or gained, I can’t tell—when I look into my eyes.
But recognizing myself in pictures, of course, does not signify a full return; I’m different than I was before. When I try to pinpoint all the subtle ways that I have changed, my hand instinctively sneaks up to that raw, bumpy bald spot on the front of my scalp that will never grow hair again. It is my permanent reminder that no matter how “normal” I feel, I will never be the same person that I was before.
However, there are far scarier things that concern me about this new Susannah. I talk in my sleep every night, something that I did not do before. One night, Stephen woke up to my screaming, “There’s a container of milk over there. A huge container of milk!” In a way, it’s funny, but given our experiences, also slightly sinister. And I have fears now that the carefree pre-illness Susannah did not have. A few months ago, a concerned parent called to update me about his daughter, who had relapsed. He shared another story about a woman who had made a full recovery for several years but recently had been stricken with the disease again while traveling abroad. Apparently relapses happen in about 20 percent of cases.60 Unlike cancer, there is no remission date. After a full recovery, you could relapse tomorrow as easily as five years from now. Those who did not have a teratoma, like me, have a higher rate of relapse, for reasons unknown, but at least those who do relapse tend to have the same rate of recovery as they did after the initial onset of the disease. This does little to ease my mind.
Recently, as Stephen and I were watching TV in our Jersey City apartment, out of the corner of my eye I saw something move on the floor.
“Did you see that?” I asked Stephen.
“See what?”
“Nothing.” Am I going crazy again? Is this how it’s going to happen?
Then I saw it again. This time, Stephen grabbed his shoe and squashed the two-inch-long water bug.
I live with this fear. It does not control me or hinder my resolve, but I do live with it. The friends and relatives I interviewed would never have used the term skittish to describe me, but every now and then, when I’m on the subway and the colors seem brighter than normal, I think, Is it the lighting, or am I going crazy again?
And what about the subtler changes that cannot be touched or easily identified? I asked Stephen if he thought I was different now. Am I suffering from cognitive defects of which I am unaware? After a moment, he shook his head, “No, I don’t think so.” But he seemed uncertain.
Those closest to me had undoubtedly changed as I did, if not even more so. Stephen, who was once always so laid back, had become a worrier, especially when it came to me.
“Do you have your phone? How long will you be gone? Call me the minute you leave,” he would often repeat, calling and texting me over and over if I went just a few minutes without answering my phone.
For a long time after the hospital, Stephen saw me as a piece of fine and fragile china that could easily break, and he continued as my protector against the cracks and fissures of the real world. Though I’m eternally grateful for this, sometimes it became exasperating when he couldn’t give up that role. How could you blame him? But I did. Accepting this type of nannying was completely outside my personality, normally so self-reliant and obtusely independent. So, perversely, I would battle him, staying out late without calling and pushing his buttons about his constant check-ins. It was only when I started acting like an adult that Stephen started to treat me like one, and slowly we became
equals again, evolving into a healthy relationship so different from the caregiver-patient relationship that had been formed under the harsh lights of the hospital room. But of course he still worries, and I doubt this will ever change. His thoughts often return to that night at my Hell’s Kitchen apartment, where my eyes rolled back in my head and my body stiffened, and both of our lives changed forever.
Yet some things haven’t changed. My parents, who had briefly been able to put aside their deep-seated animosity during my hospital stay, weren’t able to maintain their civil relationship after I had returned to myself. Without doctor appointments keeping them in contact, they fell back into the routine of habitual avoidance that even their daughter’s near-death experience couldn’t mend.
People never change, they say. I remember when I was entering sixth grade and the guidance counselor called us into her office to talk about the transition from elementary school to middle school. She asked me to pick an emoticon out of a list of about fifty to describe how I felt on the first day of school. I picked “ecstatic,” the one with the wide-mouthed, full laugh. The counselor was surprised by my pick; this apparently was not a common choice. I had been ecstatic then, but would I pick ecstatic now? Or have I lost that spark after all? Is there a sliver of me that did not recover from the fire?
CHAPTER 51
FLIGHT RISK?
The impostor EEG nurse, the sea of paparazzi surrounding my father at the top of the news hour, the insult silently hurled at me by my stepfather. These absurd memories persist, while others that are real and documented fall through the fingers of my mind like water. If all I remember are hallucinations, how can I rely on my own mind?
Brain on Fire: My Month of Madness Page 22