Brain on Fire: My Month of Madness

^{CHAPTER 35} THE VIDEOTAPE

Iinsert a silver DVD marked “Cahalan, Susannah” into my DVD player. The video begins. I see myself at the center of the screen, peering into the camera’s lens. The hospital gown slips off my left shoulder and my hair is stringy and dirty.

“Please,” I mouth.

On the screen, I stare straight ahead, lying on my back as rigid as a statue, my eyes the only feature betraying the manic fear inside. Then those eyes turn and concentrate on the camera, on me now.

Fear of this sort is not something we typically capture in photographs or videos of ourselves. But there I am, staring into the camera as if I’m looking death in the face. I have never seen myself so unhinged and unguarded before, and it frightens me. The raw panic makes me uncomfortable, but the thing that truly unsettles me is the realization that emotions I once felt so profoundly, so viscerally, have now completely vanished. That petrified person is as foreign to me as a stranger, and it’s impossible for me to imagine what it must have been like to be her. Without this electronic evidence, I could never have imagined myself capable of such madness and misery.

The video self hides her face under the covers, clutching the blanket so hard her knuckles turn white.

“Please,” I see myself plead on video again.

Maybe I can help her.

^{CHAPTER 36} STUFFED ANIMALS

“What did it feel like to be a different person?” people ask.

It’s a question that’s impossible to answer with conviction, because, of course, during that dark period, I didn’t have any real self-awareness that allowed me the luxury of contemplation, the ability to say, “This is who I am. And this is who I was.” Still, my memory does retain a few moments from those weeks right after the hospital. It’s the closest I can get to recapturing what it was like to feel so utterly divorced from myself.

A few days after my first hospital stay, Stephen drove me to his sister Rachael’s house in Chatham, New Jersey.

I remember the view from the car’s passenger seat window, driving past the familiar tree-lined suburban streets. I stared out the window as Stephen’s free hand held mine. I think he was as nervous as I was about my reintroduction to the real world.

“Good turkey,” I said, out of the blue as we turned into the driveway. It was a simple reference to the night in the hospital when Stephen had brought roasted turkey leftovers for me from his family’s Easter dinner. He couldn’t help but laugh, and I smiled too, though I’m not certain that I was even in on the joke.

Stephen parked the car next to a woodshed under a basketball hoop. I reached for the door handle, but my fine motor skills were still so weak I couldn’t open the car door, so Stephen ran to the passenger side and helped me out safely.

Stephen’s sisters, Rachael and Bridget, and their young children, Aiden, Grace, and Audrey, were waiting in the yard. They had heard snippets of what had happened, but most of it had been too painful for Stephen to recount, so they were largely unprepared. Bridget, for one, was shocked by my state. My hair was unkempt, and the angry red bald spot from the biopsy was exposed, complete with metal staples still suturing my skin together. Yellow crust covered my eyelids. I walked unsteadily, like a sleepwalker with my arms outstretched and stiff and my eyes open but unfocused. At the time, I knew that I was not quite myself, but I had no clue how jolting my altered appearance must have been to those who had known me before. Recalling moments like these, which occurred frequently during this tentative stage in my recovery, I wish I could, like a guardian angel, swoop down and help protect this sad, lost echo of myself.

Bridget told herself not to gawk and tried to hide her nervousness, concerned that I would sense it, but it only made her feel more flustered. Rachael and I had met at her daughter’s first birthday party back in October, when I had been outgoing and talkative and, unlike many of Stephen’s previous girlfriends, not at all intimidated by the closely knit nature of their family. The transformation was extreme, as though a hummingbird had turned into a sloth.

Because they were toddlers, Audrey and Grace didn’t notice that anything was wrong. But Aiden, an outgoing six-year-old, kept his distance from me, clearly unnerved by this strange new Susannah, so unlike the one who had played and joked with him only a few months earlier. (He later told his mom that I reminded him of the mentally handicapped man whom he often saw at their public library. Even in that half state, I could sense his apprehension, though I was bewildered by why he seemed so frightened.)

We all stood in the driveway as Stephen handed out the presents. As soon as I’d gotten out of the hospital, I felt compelled to give away the stuffed animals that had accumulated while I was sick. Grateful as I was for them, they served as plaguing reminders of my childlike state, so I wanted to purge myself of them by handing them off as gifts to the kids. Aiden said a quick thank-you and stood behind his mother as the two girls hugged my leg, each with their own high-pitched “Thank you!”

This initial memory, my first of many interactions with the outside world to come, lasted a mere five minutes. After Stephen handed out the presents, the conversation lulled, as everyone around me struggled internally to keep the superficial flow of words going while also concentrating on ignoring the obvious pink elephant in the room: my shocking state. Would I always be like this? Normally I would have attempted to cover up the silences with my own banter, but today I couldn’t. Instead I stood mute and unemotional, internally desperate to escape from this painful reunion.

Stephen was highly attuned to my growing unease, so he put his hand on the small of my back and guided me to the security of the car that would return us to the inner sanctum of our little protected world at home. Though the scene was brief and largely undramatic, and may seem insignificant in the overall scheme of things, it is branded into my mind as a key moment in the initial stage of recovery, viciously pointing out how painful and long the road to full recovery would be.

Another homecoming stands out for me during that same hazy posthospital period: the first time I saw my brother after the hospital. While my life had changed forever, James had been completing his freshman year at the University of Pittsburgh. Though he had begged to visit me, my parents had remained adamant that he complete the year. When school finally ended, my father traveled to Pittsburgh to help bring my brother home, and over the course of the six-hour drive, Dad shared what he could about the past few months.

“Be ready for this, James,” my father warned him. “It’s shocking, but we need to focus on the positive.”

I was out of the house with Stephen when they arrived. My father let James off in the driveway, because my parents, though on far better terms than before, were still not friendly enough for home visits. James watched a Yankees game while he anxiously anticipated my arrival. When he heard the creaking of the back door, he jumped up from the couch.

The image of me walking through the door will remain with him forever, he says. I was wearing oversized, scratched-up glasses, a white cardigan that was two sizes too big, and a mid-length black tent dress that billowed out around me. My face was puffy and unrecognizably distorted. As I wobbled up the steps and through the doorway on Stephen’s arm, it seemed as if I had both aged fifty years and lost fifteen, a grotesque hybrid of an elderly woman without her cane and a toddler learning to walk. Even as he watched me, several beats passed before I noticed him in the room.

For me, it was an equally powerful encounter. He had always been my kid brother, but now he had become a man overnight, complete with stubble and broad shoulders. He looked at me with such a devastating mixture of surprise and sympathy that I almost fell to my knees. It wasn’t until I saw the look on his face that I realized how sick I still was. Perhaps it was the closeness between us as siblings that brought this realization to the fore, or maybe it was because I had always considered myself an older custodian to baby James, and now the roles were clearly reversed.

As I wavered there in the doorway, James and my mom ran over to embrace me. We all cried and whispered, “I love you.”

^{CHAPTER 37} WILD AT HEART

When I wasn’t attending doctors’ appointments, my parents allowed me to walk alone to Summit’s quaint downtown to get coffee at Starbucks, though they didn’t yet sanction solo train trips to visit Stephen in Jersey City. So James mostly drove me around.

It took about a week after James returned from school for him to feel comfortable with this new subdued and disoriented sister. I liked to believe that over the course of our lives, I had played a primary role in James’s hipness—sending him Red Hot Chili Peppers CDs at camp, introducing him to Radiohead, giving him tickets to a David Byrne show in Pittsburgh—but now he was the one introducing me to new things. He prattled on about this singer or that movie that we had to see; I had nothing to add.

Despite my being bad company, James spent a lot of his time with me. He worked nights at a nearby restaurant, but when he was free, he would drive me down to the local ice cream parlor for a cup of mint chocolate chip ice cream with chocolate sprinkles, a treat I indulged in at least thirty times during that strange spring and summer. Sometimes we even went twice in one day. We also spent many of our afternoons watching Friends, a show that I had never liked before but now became fixated on, though James still disliked it. When I laughed, I would cover my mouth with my hands, but then forget they were there, keeping them by my face for several minutes before mechanically returning them to my sides.

At one point I asked my brother to drive me to town so that I could get a pedicure in preparation for my stepbrother’s upcoming wedding. He dropped me off, and I told him that I would call him in an hour, but when my father came to Summit from Brooklyn to check on me and found that I had been gone twice as long without word (I had stopped off for a cup of Starbucks coffee before heading to the salon, which lengthened the trip), he panicked. They frantically canvassed the town, until my father paused in front of Kim’s Nail Salon.

He peered into the darkened windows of the spa’s storefront and caught sight of me in a massage chair. I looked dazed, staring straight ahead, like I was sleeping with my eyes open. A pool of spit was forming around my lower lip. A few middle-aged women, “Summit moms” as they are called, were throwing uneasy glances in my direction. They seemed to be silently encouraging one another to “check out that crazy girl.” My father would later tell me that he was so furious at them he had to move away from the window, prop himself up against the neighboring storefront, and collect himself. After a moment, he took a deep breath and entered the spa with a big smile, his voice booming around the room: “There you are, Susannah. We’ve been looking all over for you!”

Later the same week, my mom took off work and suggested that we go shoe shopping in Manhattan. As I examined various flats at an Upper East Side store, the salesperson approached my mother.

“Oh, she’s so nice and quiet. What a sweet girl,” the saleswoman commented cheerfully. It was clear that she thought I was slow.

“She’s not sweet,” my mom hissed, enraged on my behalf. Luckily, I missed the whole exchange.

I fell asleep on my mother’s shoulder the way back on the train; the medication and the residual cognitive fatigue from my healing brain made concentrating on acting normal incredibly draining.

Back in Summit, as we headed down the stairs from the train platform, I heard my name. I chose to ignore the voice at first. Not only was I still not quite sure what was real and what was in my head, but the last thing I wanted was to see someone I knew. The second time I heard my name, though, I turned around and saw an old high school friend, Kristy, walking toward us.

“Hi, Kristy,” I said. I was trying to make my voice loud and confident, but it came out in a whisper. My mom noticed and spoke for me.

“We were just shopping in the city. We got some shoes,” she said, pointing to our bags.

“That’s nice,” Kristy said, smiling politely. She had heard that I was sick, but had no idea that the problem was with my brain. For all she knew, it had been a broken leg. “How are you?”

I struggled to conjure the loquaciousness that had once been a primary aspect of my personality, but in its place found a deep blankness. My inner life was so jumbled and remote that I couldn’t possibly summon up breezy conversation; instead, I found myself focusing on how flushed my face had become and the pool of sweat forming in my armpits. I realized then how great a skill it is to be social.

“Goooooood.” I drawled out the word like I had enough marbles in my mouth for a game of mancala. My mind continued to circle around that vast emptiness. Say something! I screamed inside, but nothing came. In the silence, I felt the sun beat down on my shoulders. Kristy stared at me with concern. After an awkward moment, she waved her hand and explained that she was running late.

“Well, it was really good seeing you,” she offered, turning to leave.

I nodded and watched her glide through the door to the station. I nearly broke down right there in the street. It was amazing how powerless I felt at that moment, especially compared to the superhuman control I had enjoyed during the height of my psychosis. My mom took my hand, realizing the magnitude of this soul-crushing moment, and led me out to the car.

Despite all this nerve-wracking, zombie-like behavior, James too, like Stephen, saw moments where the “old Susannah” would shine through. Everyone held out hope that I would eventually return. One evening when Hannah came to visit, we sat in the family room watching Blue Velvet, a movie by David Lynch, a favorite director of mine. As the first fifteen minutes of the movie played, James and Hannah bantered about its terrible acting. I said nothing, but much later, after they had moved on to a different conversation, I interrupted them to point out, “It’s on purpose. The acting. That was David Lynch’s style. It’s much better in Wild at Heart.”

James and Hannah quieted, nodding their heads solemnly. Though they didn’t speak about it that night, both would later remember this moment as another confirmation that my old personality was intact, just buried.

^{CHAPTER 38} FRIENDS

Besides the walks to Starbucks, the Friends episodes, and the drives to the ice cream parlor, I spent most of my time in a state of perpetual anticipation as I waited like a puppy for Stephen’s arrival on the commuter train to Summit.

Because I couldn’t drive, my Mom, Allen, or James had to chauffeur me to the station. One afternoon while my mother and I sat in the car, waiting for him, my mom pointed and said, “There he is! He looks so different!”

“Where?” I said, scanning the crowd. Only when he reached the passenger side window did I finally recognize him: He had shaved his beard and cut his shaggy, cheekbone-length hair into a dapper, slicked-back 1940s hairstyle. He looked even more handsome than usual. As I watched him enter the car, I was suddenly filled with an aching feeling of gratitude that I had found such a selfless, devoted person. It’s not as if I hadn’t known that all along; it was just that at that very moment, I couldn’t contain the deep love I had for him, not only for staying with me, but also for providing me with security and meaning at a very difficult time in my life. I had asked him many times why he stayed, and he always said the same thing: “Because I love you, and I wanted to, and I knew you were in there.” No matter how damaged I had been, he had loved me enough to still see me somewhere inside.

Though he claims he could see the old me, most other people found it hard to relate. A few days later, I agreed to attend a homecoming party for one of Stephen’s and my closest friends, Bryan, who had briefly returned home from Austin, Texas. When we arrived, the grill was going in Bryan’s mother’s backyard and adults of various ages sat around eating burgers, playing bocce ball, and chatting. As I joined the party with Stephen and his sisters, I felt the air get leeched from the room as everyone seemed to gawk at the sick girl. Though this was likely all in my mind—many of the people had no clue that I had been sick, and even more of them had never met me before—I felt as if I were the center of attention in the worst way.

Yet my friends who were there would later tell me that I seemed unnaturally happy, beaming a plastic and fixed ear-to-ear smile. Maybe that was some sort of self-preserving body armor, a mask to keep the frightening hordes at bay.

At the party, hardly anyone asked me about my hospital stay, though the people who had heard about it approached me diffidently, eyes downcast, seemingly shamed by their knowledge, however slim, of what had befallen me. To these friends, it was like losing me in plain sight while the substitute Susannah was still there to remind them of the person who I had been before. All the while, my mind encircled itself with questions: Did they hear I was in the hospital? Did they hear I was crazy? Instead of engaging, I found myself fixedly staring them down, unable to converse. Eventually I gave up trying and concentrated on eating the juicy watermelon and hamburgers cooked on the grill.

But I had my savior: Stephen. People called him the “Susannah whisperer,” because he seemed to sense what was unspoken. At the party, he stood by my side, never once letting me stray too far from his watchful gaze. When people who hadn’t been debriefed came up to chat with me, he took the reins in the conversation, not something that the normally laid-back, California-cool Stephen did, but something that was now necessary. When I couldn’t speak, he spoke for me. Like my plastic smile, Stephen became another layer in my protective armor.

At one point, an old friend, Colleen, who had heard about my hospital stay from Stephen’s sister Bridget, noticed that as I ate a piece of watermelon, the red juices dribbled down my chin and onto my dress. She felt conflicted: Tell me or let it be? She didn’t want to embarrass me, but she didn’t want to let me go on looking like a clueless child. Luckily, before she had to make the decision, Stephen wiped the watermelon juices from my chin.

After an hour at the party, I gave Stephen a look, and he nodded back knowingly. It was time to go.

My second organized social experiment occurred the last week of May at my stepbrother, David’s, wedding. I was initially supposed to be a bridesmaid and had purchased the dress just before I got sick, but after I got out of the hospital the bride gently suggested that it might be best if I no longer took part in the ceremony.

Obviously, I thought then, she’s embarrassed by me.

I realize now that she was acting out of concern, but it was proof to me then that I had become a burden. Normally I was someone people wanted to include—Stephen and I had even been voted “most fun couple” at one wedding we attended prior to my illness—but now I had become a source of shame. This stung and whittled away at my fragile self-worth, which had taken such a thrashing over the prior months.

Still, I was determined to prove to her and the rest of the wedding party that I still “had it.” I styled my hair with a straightening iron to cover up my biopsy scar and bought a bubble-gum-pink dress, while Stephen wore a mod-style suit with a skinny tie. A mere month after the reunion at Rachael’s house, going to the wedding represented a significant step forward in my recovery process. I was nearly past the period where I looked and acted noticeably awry, though my face was still puffy from the steroids and my words were still faltering and largely monosyllabic. If you didn’t look too closely, though, Stephen and I seemed like an ordinary hipster couple.

The ceremony took place in a manor in Hudson Valley, New York, where grapevines dangled along the gates and wildflowers bloomed as far as the eye could see. Stephen and I spent most of the party standing by the makeshift kitchen, where the caterers entered and exited carrying plates of hors d’oeuvres. I don’t know if it was the steroids, which can cause an increase in appetite, but I was ravenous.

At the beginning of the night, my mom made me promise that I would drink only one glass of wine. I all but rolled my eyes when I agreed and then went ahead and drank several flutes of champagne. If there’s one thing about me that has been confirmed by my illness, it’s my tenacity, or bullheadedness, or whatever else you want to call it. Even though my brain was still repairing itself and it’s undoubtedly dangerous to mix alcohol with antipsychotics, I insisted on drinking. I didn’t care how self-destructive it might be—this was something tangible that connected me to the “normal” Susannah. If the old Susannah had a glass of wine or two with dinner, so would this Susannah. I couldn’t read, could hardly make small talk, and couldn’t drive a car, but, dammit, I was going to have a few glasses of champagne at a wedding. My mother tried to stop me, but she knew she had no control over my vices: I was going to do what I pleased. Ultimately the wine represented independence, and everyone around me decided it was best not to stamp out what remained of my dignity.

When the song “Build Me Up Buttercup” came on, I even did the twist with Stephen. In my mind, I rocked the dance floor, ignoring the aches and pains in my shins and the fact that I was tiring much more quickly than ever before. (I would later learn from my stepfamily, however, that instead of moving like a pro, I just looked robotic and dazed.)

Despite my attempts at seeming blithe and careless, I was hyperattuned to the different ways people were treating me. Since this was a family event, the first question out of everybody’s mouth was, “How are you?” It was an unanswerable question at this stage. But that wasn’t the worst part. It was the falsely enthusiastic, carefully enunciated tone people used; they were talking down to me, as if I were a toddler or a very old person. It was demoralizing, but I couldn’t really blame them. No one had a clue about what was going on inside my mind.

My mother, however, was proud to see me enjoying myself—that is, until another wedding guest broke into her quiet admiration.

“I’m so sorry to hear what happened to Susannah,” the woman said, hugging her. My mother does not like to be touched by strangers.

“Thank you,” she said, trying to keep an eye on me.

“It’s so sad. She’s so different. She’s just completely lost her spark.” At that, my mom tore her eyes from the dance floor and shot the woman a look. There had been many moments of insensitivity, but this was among the worst. “I mean,” the woman continued, “do you think she’ll ever get back to her old self again?”

My mom smoothed out her dress, also pink, and shouldered past the woman, saying through clenched teeth, “She’s doing very well.”

^{CHAPTER 39} WITHIN NORMAL LIMITS

Although I had already made substantial leaps in my recuperation, nonetheless for many months to come my days would revolve around the candy-colored medications that I had to take six times daily. Each week, my mother spent an hour portioning out my pills into a dispenser that was the size of a shoebox top. Often it took her several tries to get the proportions right because the doses were complicated and always changing. The pillbox was divided into yellow, pink, blue, and green slots and had seven columns for each day of the week and four rows: morning, midafternoon, late afternoon, and bedtime. I was tethered to this pill dispenser.

My reliance on these pills meant I couldn’t be independent, and so I loathed them. Not only were they symbols of my infantile status in my mother’s home, but the pills also made me sleepy and slow. Sometimes I would just “forget” to take them (an incredibly dangerous thing to do). Because I wasn’t wily enough to throw out the medication, I often left the evidence in the dispenser, which tipped off my mother, prompting her to reprimand me as she would a child. In many ways, during that recovery period at my mother’s home, I associated the pills—and the fights they engendered—with her. In a practical sense, I needed her to portion out the pills because it was far too complicated a task for me at the time. In a more emotional sense, though, I began to feel that she, like the pills, embodied my contemptible dependence. I can admit now that I was sometimes cruel to her.

“How was your day?” she would ask me after she returned home from a long day at the district’s attorney’s office.

“Fine,” I would say coldly, without elaborating.

“What did you do all day?”

“Not much.”

“How are you feeling?”

“Fine.”

I cringe when I recall these interactions, since my mom and I had always been inseparable, and I can only imagine how much it must have hurt her. I realize that I was still holding tightly on to an amorphous grudge against her for reasons that seem so meritless now. Though the hospital was a blur, residual anger from that time remained somewhere in my subconscious. Somehow I had convinced myself that she hadn’t spent enough time with me in the hospital, though this was neither fair nor true. On some level, her suffering, which she had buried so deeply, had begun to drain out of her unconsciously and onto me. The worst part was that the struggle didn’t end once the hospital stay was over; now she had to live with this hostile stranger, her own daughter, who had once been one of her closest friends. But instead of sympathizing with her pain, which certainly matched and may have even surpassed my own, I took her suffering as an affront—a sign that she could not handle how flawed the sickness had made me.

She spoke at length about these feelings to Allen but, understandably, kept them hidden from my father. When my parents spoke to one another, they stuck to discussing how I was doing and hardly engaged in any personal or idle chitchat. Every two weeks, however, they reunited to bring me to Dr. Najjar at his office. Each time he would lower my dosages of steroids; next Dr. Arslan would follow suit with the antipsychotics and antianxiety medications, reducing the amounts in tandem with the changing steroid doses. These were uplifting appointments because each time I seemed to progress steadily, and my parents seemed to be getting along better.

Dr. Arslan would always ask the same question: “Out of 100, what percentage do you feel like yourself?”

Every time I answered with confidence, only my blushing face betraying my inner uncertainty: “Ninety percent.” Or, when I was feeling particularly assertive, “Ninety-five percent.”

My father always agreed with me, even if he felt differently. But my mom would sometimes gently interject: “I would say more like 80 percent,” and this was even a stretch, she would later admit.

Though recovery is clearly a relative process (you need to know where you’re coming from to see how far you’ve gone), we would soon get an expert’s view when I attended two evaluation sessions at New York University’s Rusk Institute of Rehabilitation Medicine. I was dreading the trip. Although I was clearly getting better, I didn’t want proof of my continued inability to accomplish simple tasks. But my mom was adamant that I go.

I recall little from the first session because I was too exhausted to be tested. All I remember are the young psychologist’s wide and friendly blue eyes. On the second visit, my mom and dad led me into the Rusk Institute’s room 315, where that same psychologist, Hilary Bertisch, led me into her office. My parents stayed in the waiting area. Dr. Bertisch would later tell me that even at this stage I seemed disconnected from my external world and that I often responded to her promptings so slowly that she wondered if I had heard her at all. In some ways, she said, my behaviors resembled the negative symptoms of schizophrenia: inexpressiveness, blankness, lack of feeling, and monotone and monosyllabic speech.

Dr. Bertisch assessed my concentration and memory by providing a letter cancellation test, in which I had to cross out certain words or letters in a normal-length newspaper article, coincidentally enough. She first asked me to cross out all the h’s. I got all of them, but it took me 94 seconds, which placed me in the borderline impaired range. Then she had me cross out all the c’s and e’s. I missed four of these, and the whole thing took me 114 seconds: borderline again. Then came the hardest part: find each use of and, but, and the on the page. I remember feeling confused and constantly forgetting which words to focus on. Out of the 173, I missed 25. Anything more than 15 is considered “severely impaired.” My speed, accuracy, and concentration were dismal.

She moved on to working memory, which checks the ability to hold information in your mind for a short period of time. She read aloud simple mathematical word problems, which were elementary but that I could solve only at the twenty-fifth-percentile range.

My visual working memory was even worse. Dr. Bertisch presented a picture of a shape for a few seconds and then asked me to draw it from memory. No matter how hard I tried, I couldn’t imagine the original shape. Here I was in the first percentile, the most severely impaired.

My ability to conjure up words from memory was also fairly poor. Dr. Bertisch repeated the same style of test that had been done in April, when Dr. Chris Morrison asked me to name fruits and vegetables, but this time Dr. Bertisch gave me a minute each to think of as many f, a, and s words as I could:

F: “Fable, fact, fiction, finger, fat, fantastic, fan, fastidious, fantasy, fart, farm”

A: “Apple, animal, after, able, an, appeal, antiquity, animosity, after, agile.” (Because I had repeated “after” I got only nine.)

S: “Scratch, stomach, shingle, shit, shunt, sex, sing, song, swim, summer, situation, shut”

Overall, I named 32 words in 3 minutes. Though this was a significant improvement from April, when I could name only 5 words in one minute, the average number of responses is 45.

Yet in other tasks, I had made significant progress. My verbal functioning was now “superior,” in the ninety-first percentile. My verbal abstract reasoning, which was tested by using analogies, such as “How are China and Russia related?,” was in the high-average eighty-fifth percentile. And despite difficulties with basic cognitive functions, I was still capable of complex analytical thinking, which surprised Dr. Bertisch. On a test involving pattern recognition, I got everything correct, though it took me longer than normal to do so. I couldn’t draw an octagon from a visual cue card, but I could make complex leaps in logic. Later she would tell me that the way I presented to people did not match up with what seemed to be going on internally. There was a serious disconnect, and I may have actually been more present than I appeared. I felt this divide too. Often, like at the party and the wedding just a few weeks before, I felt as if my “self” was trying to communicate with the outside world but couldn’t break past the broken intermediary, my body.

At the end of our last interview, Dr. Bertisch asked me what I felt were my most pressing problems. “Problems with concentration. With my memory. Finding the right words,” I told her.

This she found reassuring. I had defined exactly what was wrong with me. Often those with neurological issues cannot readily identify what is the matter.⁴⁷ They don’t have the self-awareness to understand that they are ill. Paradoxically my ability to recognize my own weaknesses was a strength.

This explained why social situations were so rough on me: I was aware of how slow and strange I appeared to those around me, especially people who had known me before my illness. I expressed this insecurity to Dr. Bertisch, admitting that I often felt depressed and anxious in groups. She suggested individual and group cognitive rehabilitation, individual psychotherapy to address symptoms of depression and anxiety, and a young adult group.

In the end, though, I was so unsure of myself that I did none of it. In retrospect, this was a big mistake: there is a window of spontaneous healing in the brain after injury or illness, and it’s best to jump at any opportunity for faster revitalization. Though it’s unclear what role cognitive rehabilitation plays in the recovery from this disease, I would have likely mended more quickly had I done it. But these sessions only highlighted my inner disunity, and I was loath to continue. I never returned for a follow-up. As it was, it took me a year to even decide to track Dr. Bertisch down and get the results of this one group of tests. I didn’t yet have the nerve to face how bad off I really was.

^{CHAPTER 40} UMBRELLA

I couldn’t help but consider another hospital stay as a step backward in the march toward recovery, so when Dr. Najjar called my mother in late May to say that I needed to return to the hospital for a second round of IVIG treatment, I was despondent. I shuddered to think of the harsh lights of the hospital room, the constant interruptions of the nursing staff, and those awful preheated dinners. To get my mind off it, my father invited Stephen and me to spend the night, something we did at least once a week now, in his shady backyard, an oasis in the middle of Brooklyn Heights. We ate barbecue, drank sangria, and donned sombreros. A string of multicolored Christmas lights roped around the length of the yard, and Ryan Adams played in the background.

I remained silent for a large portion of the night, as Stephen, Giselle, and my father chatted. Whenever they’d try to include me in a conversation, I shook my head and returned to unconsciously smacking my lips together.

“I’m boring. I don’t have anything to say. I’m not interesting anymore,” I kept repeating.

“You’re anything but boring,” my dad would often respond adamantly. It broke my father’s heart to hear me say such things. He told me a few years later, in that same backyard and under those same strings of lights, that he would cry himself to sleep thinking of those words.

But no one, not even my father, could convince me otherwise. I was dull, no doubt about it. And being boring was perhaps the toughest adjustment to my new life. This was partially due to the antipsychotics, since the drugs I was on are known to cause drowsiness, confusion, and fatigue. Still, my broken brain itself was likely the most significant cause of my new lack of spirit. It’s likely that the electrical impulses between neurons in my frontal lobes were not adequately firing, or they were misfiring and taking longer to get to their intended targets.

The frontal lobes are largely responsible for complex executive functions, prompting experts to refer to it as “the CEO.”⁴⁸ It only fully develops into our twenties, which tempts many experts to hypothesize that the frontal lobe’s maturation is what distinguishes children from adults. But one thing is certain: the frontal lobes make us creative, human, and simply less boring.

(We know, horribly, what happens when the frontal lobe is impaired because of the controversial lobotomy surgeries practiced in the 1950s and 1960s. One such method, the “ice pick” lobotomy, made infamous by Rosemary Kennedy, was a procedure in which a doctor would peel back the patient’s eyelid, insert a metal spike above the eyeball until it hit the top of the orbit, and then tap, tap, tap into the brain for several minutes.⁴⁹ This imprecise procedure severed several frontal lobe connections, yielding results ranging from dulled emotions to childish behaviors. Some patients were even rendered completely devoid of serious thought and feeling, much like what happened to Randle McMurphy, Jack Nicholson’s character in the film One Flew Over the Cuckoo’s Nest.)

Although my frontal lobes were perhaps taking longer to repair (as some emerging research shows) than other areas, there was nevertheless improvement. In the hospital, one doctor had described my frontal lobe function as being “close to zero.” I had, at the very least, improved from nothing.

By the end of dinner, I was so groggy that I put my head on the table and slept straight through the conversation until my own snores woke me up. Shaking myself awake, I headed up the steep metal staircase to the speaker dock that held my iPod. I had recently downloaded the Rihanna song “Umbrella,” even though it had been out for a few years and it wasn’t even necessarily my typical style of music. Now her stylized, R&B-tinged vocals wafted through the summer night.

I looked down with fondness at my father, Stephen, and Giselle and swayed to the music, suddenly filled with buoyant energy. The music blared, and I began to move my body to the beat, almost absentmindedly, until I was fully rocking out, maybe not exactly gracefully but nowhere near as stiffly and robotically as I had at the wedding a month earlier. Giselle was moved by the glow in Stephen’s face when he glanced up and caught me dancing so freely. For a long time it had seemed as if I had existed in a walking coma, but now they all saw life in this awkward reggae dance.

Stephen joined me up on the steps, took me in his arms, and twirled me around, as we laughed at how silly we looked. My father and Giselle joined hands and slow-danced to the upbeat song.

^{CHAPTER 41} CHRONOLOGY

The brain is radically resilient; it can create new neurons and make new connections through cortical remapping, a process called neurogenesis. Our minds have the incredible capacity to both alter the strength of connections among neurons, essentially rewiring them, and create entirely new pathways. (It makes a computer, which cannot create new hardware when its system crashes, seem fixed and helpless.) This amazing malleability is called neuroplasticity. Like daffodils in the early days of spring, my neurons were resprouting receptors as the winter of the illness ebbed.

It was during that dreaded third hospital stay that my true moment of awakening occurred; I began keeping a diary, started reading again, and first expressed the desire to understand what had happened to me. Perhaps because the diary provides physical evidence of my budding self (I can literally read the thoughts of that wounded Susannah), I can in essence begin to remember what it was like to be her, unlike the earlier Susannah from those paranoid diary entries before the hospital, who was more like a figment of a shadowy memory, so distant that she might have been a character in a horror movie. Yet the person I read about in my recovery diary is childlike and prosaic, unlike that umbral pre-hospital self who could, even at her most obscured, be eerily illuminating. Yet, there are surprising similarities between this diary and the journals I kept during junior high school. In each, there’s a stunning lack of insight and curiosity about myself. In place of deep thought, there are dozens of passages dedicated to my body (weight gain in the recovery piece and lack of breasts in the junior high journal) and silly, petty issues of the day (hating hospital food versus fighting with frenemies). I sympathize with this vulnerable, budding Susannah, as I do that preteen version of myself, but she is still not entirely me, as I am now.

I wrote my first entry at the hospital, dated June 3, 2009, while I was receiving the second IVIG infusion. My father, who had stayed with me every morning as usual during that third hospital stay, helped me write, suggesting that I try to retrace my lost time by compiling a chronology of events from my own memory. My list began with “numbness and sleepiness” and ended with “seizure 3 in the hospital.” I had nothing to record after I had bought that cappuccino in the admitting area of the hospital on March 23. In making the list I had also gone back and crammed the words “night at Dad’s house” in between “seizure 2” and “seizure 3,” almost as an afterthought. This line is the least legible, and with good reason: I was still uncertain and ashamed of my behavior that toxic night (as I am to this day), and it showed even in my handwriting.

My writing was still unfamiliar, but it was a far cry from the infantile notes I had made during my first hospital stay. I could now write in full sentences and even use a semicolon. But what is most telling about my list is the absence: there are no memories at all from my time in the hospital.

My father looked over the page with alarm. It was the first confirmation of my profound memory loss. But he hid his surprise and helped me add in some pieces from his own recollection, providing a more fleshed-out version of events. However, there are still clear omissions, which were both my father’s and mine. The gaps are minor but telling, since memory loss can occur not only in brain injury but also with emotional trauma. No one close to me during this time had been spared.

My father indulged in this chronology entirely for my benefit, because he despised speaking of that time. His new motto had become: “To move forward, you have to leave the past behind.” But Giselle would later tell me privately how hard the situation had been on him. He was a wreck. When other family members called for updates, he’d wave away the phone, certain that he would lose his hard-won composure once he heard familiar voices. My brother remembers speaking to our dad over the phone while he was still in school and I was still in the grips of a mysterious illness. At one point in the conversation the only sound James could hear on the other line were deep gulps of air meant to mask the sounds of heavy sobs.

Then there is the private journal, which my father, in lieu of talking directly to me about what happened, decided to hand over to me for my research. These entries allowed me to relive the hospital stay from my father’s perspective. I read and reread every line; there were moments of laughter and solemn times, and then there were passages so heartwrenching that I wanted to race over to him in Brooklyn and give him a bear hug. But I knew better than to do that. “To move forward, you have to leave the past behind.” Though I wasn’t ready to do that myself, I could, at least for his sake, follow his motto when it related to him. My strong Irish protector was, at the heart of it all, a big softie, and his love for me, something that during our roughest times I had questioned, was immeasurable. “All I knew was that she was alive, and her spirit was intact. We had more hospital stays for treatments, doctor visits, and lots of medications to deal with, but my baby was on the way home,” the journal ends.

Though I never properly thanked my father (or, for that matter my mom, Stephen, my friends, or even the doctors and nurses), we now met for dinner regularly, which was a vast improvement over the once-every–six months relationship we had had before. Sometimes, now, over a meal, we lock eyes and begin speaking in some sort of secret code, which could be described as an otherworldly connection, inadvertently freezing out everyone else at the table. I never realized how rude we often were until Giselle later brought it up. “I don’t think you guys are aware of it,” she confided, “but sometimes it’s hard for people around you to feel included.”

We didn’t mean to exclude others. My dad and I had gone off to war, fought in the trenches, and against all odds had come out of it alive and intact. There are few other experiences that can bring two people closer than staring death in the face.

By contrast with my newfound connection with my dad, ever since I was released from the hospital, there had been the cloud of the pills and everything else hanging over my mother and me. I think it’s precisely because of how close my mother and I had been prior to my illness that our relationship suffered. Perhaps because my dad had been more of a footnote in my life, whereas my mom was a dominant force, it was easier for my father to engage with this “new” me.

To cope, my mom actively rewrote the narrative of my disease, insisting that I was “never really that bad” and that she “always knew I would recover.” I was too strong to be sick forever, she told herself. She couldn’t come to terms with the fact that I wasn’t yet fully recovered until one afternoon in midsummer when we went out to eat, just the two of us, at J. B. Winberie’s in Summit. It was a magnificent evening, with a slight breeze rustling the umbrellas above the patio furniture, so we took seats outdoors and ordered fish entrees and a glass of white wine each.

As we ate, I began to ask her questions about how I had behaved during those days in Summit before I was admitted to the hospital. I still had only nebulous recollections, mostly of things that had turned out to be hallucinations, and I wasn’t sure what was real or not. The whole thing was still a mystery to me, and I was eager to piece together what had happened.

“You were just out of your mind,” she said. “Do you remember when you had your EEG done?”

EEG? “No, I don’t.” But after some rehashing, I did remember something: the nurse at Dr. Bailey’s office with her strobe light. Unlike the unnerving scene in the hospital video, when my experience of those moments was likely never encoded in my brain at all, this memory had been made and stored. The problem was retrieving it. When the brain is working to remember something, similar patterns of neurons fire as they did during the perception of the original event. These networks are linked, and each time we revisit them, they become stronger and more associated. But they need the proper retrieval cues—words, smells, images—for them to be brought back as memories.

Watching me struggle to remember this, my mom’s face flushed, and her lower lip quivered. She buried her face in her hands; it was the first time I had seen her cry since long before I was sick.

“I’m better now, Mom. Don’t cry.”

“I know, I know. I’m being silly,” she said. “Oh, and you were totally nuts. You walked into a restaurant and demanded food. Just demanded it. Although I guess that’s not too far outside your normal personality.”

We laughed. Just for a brief moment, I could picture the rows of booths in the diner and a blurry man behind the countertop handing me coffee. This recovered image taunted me with the echoes of all the other moments I had forgotten and would never get back. And then it was gone.

More than just the recovery of a memory, though, this was the turning point when my mom finally conceded how afraid she had been, revealing through her tears that she hadn’t always been certain that I would be “fine.” And with that simple, natural gesture, our relationship rounded a corner. She once again became my ultimate confidante, companion, and supporter. It took accepting how close I had come to death (something impossible before, because it was her survival mechanism to deny) to finally allow us to move forward together.

^{CHAPTER 42} INFINITE JEST

Four months after my initial hospital stay, the lease to my Hell’s Kitchen apartment expired. My disability payments, which had been cut in half once they changed from short to long term, could no longer cover the rental expense, so my father met me there one morning to pack up my old life and clear the way for a new, uncertain one.

The red brick tenement was the same as it had always been, with its broken buzzer, stray marks of graffiti, and the “No Trespassing” sign on the door. Piles of unopened mail cluttered my mailbox. The building’s superintendent, a chubby, middle-aged man with a thick Spanish accent, walked by us with a short, “How ya doin’?” as if I had never left. Maybe he genuinely hadn’t noticed. My father and I climbed the stairs, past the chipping, gray-yellow wallpaper. It was all so familiar that when we made it to my apartment, I half-expected Dusty to still be there waiting for me, even though my friend Ginger had been fostering her for months.

My father and I packed up piles of records, bins of winter clothes, books, pots and pans, and bedding. Halfway through our cleanup, the air conditioner went kaput, which was more than we could bear in Manhattan’s blast-furnace July heat. So we returned the next day in the sweltering heat to finally finish the place off.

There is only one line about packing up the apartment in my journal, and it’s fairly flippant, like most of my early diary entries: “He helped me pack up my apartment (good-bye living alone).” In this short line, I don’t betray the disappointment I felt about having to not only officially abandon my self-sufficient life, but also give up my first real apartment, the symbol of my forgone adulthood. It was one thing to live at my parents’ house for a few months, knowing that I had my own place just a train ride away. Now my only home was with my mom; it was like a complete return to childhood. My life of freedom in Manhattan was officially over, at least for now.

The reality was that I was no longer capable of living on my own. It was a fact that I understood but still didn’t want to face. Instead I focused on getting my future in order. I began keeping to-do lists with names of people I wanted to thank, projects I wanted to start, or articles I someday wanted to write. Every morning I planned out my day, including insignificant things like “walk to town” or “read the papers,” so I could experience the satisfaction of crossing them off. These were crucial little details, because they showed that the frontal lobe, the “CEO,” was starting to repair itself.

Instead of attending the cognitive rehab sessions my doctor had recommended, I studied for the Graduate Record Exam, believing for a period of time that school might be the next step in my murky destiny. I bought several study guides to help me prepare, putting every word I didn’t know on a flash card, going through them, and then writing down the ones I could not remember. That took up pages and pages of my diary, because I could no longer commit new words to memory as well as I used to.

I also began to read David Foster Wallace’s thousand-page dystopian novel Infinite Jest, because a pompous professor had once been horrified that I hadn’t read it yet. With a dictionary in hand, I read through the novel, stopping every other word or so to find a definition. I kept a running file of all the words that I needed to define from the book. The words I picked are obtuse to me even now, but they are also strangely illuminating:

Despite this studious attention to vocabulary, when people asked me what the book was about I’d have to confess, “I have no idea.”

I became preoccupied with my physical state. My diary entries around this time reflect a growing obsession with how much weight I had gained. My distended stomach, cellulite-covered thighs, and bloated cheeks disgusted me, and I tried in vain to avoid my image in any reflective surfaces. Often I would sit outside Starbucks and take stock of the many different types of women walking by: “I’d take her thighs,” or “I’d trade bodies with her,” or “I wish I had her arms.”

I described myself as a “roasted pig,” revolted by how my body and face seemed swollen. “Gross,” I wrote on June 16. “I make myself sick.”

Sure, I had gained a lot of weight since leaving the hospital, where I weighed in at an unnaturally skinny (for me) 110 pounds. Just three months later, I had put on 50 pounds, 20 of which were normal recovery weight and 30 of which were due to side effects of the steroids and antipsychotics, as well as my sedentary lifestyle and constant indulgence in mint chocolate chip ice cream. The steroids also made my face moon-shaped and chipmunk-like, to the point where I hardly recognized myself in the mirror. I had begun to fear that I would never lose the weight and would be forever confined to this foreign body. The problem was much more superficial—but easier to grapple with—than my real worries about being trapped in my broken mind. I know now that I focused on my body because I didn’t want to face the cognitive issues, which were much more complex and upsetting than mere numbers on a scale. When I worried about being fat forever, marred in the eyes of those closest to me, I was actually worried about who I was going to be: Will I be as slow, dour, unfunny, and stupid as I now felt for the rest of my life? Will I ever again regain that spark that defines who I am?

The same afternoon as that journal entry, I walked the fifteen minutes from my home to downtown Summit to exert my self-sufficiency and get some exercise. Even though my shins hurt when I walked, I insisted on taking the jaunt to town alone. During my sojourn, a lawn worker stared at me. I instinctively put my hand to my bald spot to shield it from his view, but when my hand touched my head, I realized I was wearing a headband. So what the hell was he looking at? Later it dawned on me: he had been checking me out. Sure, I didn’t look my best, but I was still a woman. Momentarily, this boosted whatever was left of my shriveled confidence.

I then decided to take a spin class to address the “roasted pig” syndrome and found myself on a bike next to my high school field hockey coach, who kept looking over, trying to place me. I avoided her gaze, craning my neck to the right, but there I saw two younger girls from high school, also riding bikes. I wondered if they were laughing privately about how fat I was and if they snickered about how I was living with my parents. I felt such shame, but at the time, I couldn’t put my finger on the exact reason.

Now, I think that this shame emerged out of the precarious balancing act between fear of loss and acceptance of loss. Yes, I could once again read and write and make to-do lists, but I had lost confidence and a sense of self. Who am I? Am I a person who cowers in fear at the back of a spin class, avoiding everyone’s gaze? This uncertainty about who I am, this confusion over where I truly was in the time line of my illness and recovery, was ultimately the deeper source of the shame. A part of my soul believed that I would never be myself, the carefree, confident Susannah, again.

“How are you?” people continued to ask me constantly.

How was I? I didn’t even know who “I” was anymore.

After my apartment was packed up and cleared out, I brought home all my unread mail, but I didn’t open any of it until a few weeks later. Amid the piles of bills and junk mail, I found a manila envelope sent from the office where I had gotten my first MRI, before I was admitted to the hospital in March. Inside, there was my long-lost gold hematite ring. My lucky ring.

Sometimes, just when we need them, life wraps metaphors up in little bows for us. When you think all is lost, the things you need the most return unexpectedly.

^{CHAPTER 43} NDMA

As I recovered more and more of my former functions and personality traits, and began to more fully reintegrate myself into the world, I got used to people asking about my rare and fascinating illness. I never tried to articulate it, though, just falling back on the explanation I’d heard my parents repeat so many times: “My body attacked my brain.” But when Paul, my editor at the Post, wrote asking me to explain the disease to him, I finally decided to try to summarize what had happened to me. This seemed like an assignment in a good way, and for the first time, I felt up to the mission of attempting an answer.

“We want you back!” Paul wrote to me. “God, I sound like Jackson 5. So what exactly do you have?” his e-mail read. It felt strange but also comforting to hear a voice from before my illness: my life was now divided into “pre” and “post” in a way it had never been before. I was determined to get him an answer.

“What is my condition called again?” I yelled to my mom.

“NMDA autoimmune encephalitis,” my mom shouted back.

I typed “NDMA” into the search field. An industrial waste product? “What is it again?” I called.

She walked into the kitchen. “NMDA-receptor autoimmune encephalitis.”

I Googled the correct term and found a few pages, mostly abstracts of medical journal articles, but no Wikipedia page. After scrolling through several sites, I came across a New York Times Magazine “Diagnosis” column on the disease that chronicled the case of a woman who had the same symptoms as I did, but she had the monster tumor, the teratoma.⁵⁰ The day after they removed it, she awoke from a coma and started speaking and laughing with family members. The basic explanation about the immune system and the brain was confusing to me. Was this a viral disease? (No.) Was this caused by something environmental? (Maybe, partially.) Is it the kind of disease that you can pass down to your children? (Probably not.) Questions lingered, but I pushed myself to concentrate. I sent Paul a paragraph-long summary of my medical saga, ending, “It’s been a crazy couple of months, to say the least. I now know what it’s like to go mad.”

Paul responded with, “Clears ups a lot of my own curiosity,” he said, adding, “And you do realize that your sense of humor and your writing skills have returned, right? I mean that. I can see the evolution in your e-mails and text messages from the time you were sick until now. It’s like night and day.”

Buoyed by this new ability to explain, I began to research the disease in earnest and became obsessed with understanding how our bodies are capable of such underhanded betrayal. I found, to my frustration, that there’s more we don’t know about the disease than we do know.

No one knows why certain people, those without teratomas especially, get the disease, and there is no basic understanding of how it is triggered. We don’t understand how much impact environment has versus genetic predisposition. Studies seem to point to all autoimmune diseases in general as being about two-thirds environmental, one-third genetic. So did the hypothetical businessman who sneezed on me in the subway really start this horrible chain of reaction? Or was it something else in my environment? I had gone on the birth control patch around the time that my first symptoms cropped up, so could that possibly have instigated the disease? Though Dr. Dalmau and Dr. Najjar have given me no reason to think so, my gynecologist has decided to play it safe and refuses to put me back on the patch. Could my beloved cat have been a trigger? Angela, who later adopted her from me, told me that Dusty had been diagnosed with bowel inflammation, likely caused by an autoimmune disease. Was this a coincidence, or did she and I give each other something that caused both of our immune systems to pounce? Or was there something pernicious lurking around that messy Hell’s Kitchen apartment? I will likely never know. But doctors do believe that it was probably a combination of an external trigger, like the sneeze, birth control, or a toxic apartment, and a genetic predisposition toward developing those aggressive antibodies. Unfortunately, since it’s so hard to know what causes it, realistically prevention isn’t the goal; instead, the focus has to be on early diagnosis and rapid treatment.

Other mysteries prevail. Experts don’t even know why certain people have this type of autoantibody, or why it happened to strike during that exact time in my life. They can’t say for certain how the antibody gets through the blood-brain barrier, or if it is synthesized in the brain, nor do they understand why some people recover fully while others die or continue to suffer long after the treatment is finished.

But most do survive. And even though it’s a hellish experience, the disease is unique in that way, compared to other forms of deadly encephalitis or debilitating autoimmune diseases. It’s difficult to find another example where a patient can be comatose and near death, even in an intensive care unit, for many months yet eventually emerge relatively, or even fully, unscathed.

One thing this whole experience is slowly teaching me is how lucky I am. Right time, right place. NYU, Dr. Najjar, Dr. Dalmau. Without these places and people, where would I be? And if I had been struck by this disease just three years earlier, before Dr. Dalmau had identified the antibody, where would I be? Just three years marks the demarcation between a full life and a half-existence in an institution or, even worse, an early ending under the cold, hard tombstone.

^{CHAPTER 44} PARTIAL RETURN

As he tapered off my dose of steroids, Dr. Najjar prescribed biweekly at-home antibody IVIG treatments once the insurance company finally allowed them to be conducted at home. A nurse would arrive midmornings to hook up my IV to the bags of immunoglobulin over three to four hours. Between July and December, I had twelve infusions.

I continued my correspondence with Paul throughout July. Inevitably every few days he would ask about when I was planning to return to work, and eventually we agreed that the best strategy would be for me to casually stop by the Post offices and say hello to the staff without pomp and circumstance. We picked a date in mid-July. I remember the charge I felt as I blow-dried my hair, applied makeup, and plucked my eyebrows, the first time I had done any of that since before I was sick. Then I stood in front of my closet and examined my paltry wardrobe. Only a few things still fit, since I was well ensconced in my “roasted pig” stage, so I chose my trusty black tent dress. My brother drove me to the station, and I took my first independent train ride into the city. From Penn Station I walked uptown to my offices in the scorching midsummer weather.

But when I got to the towering News Corp. building, the place where I had worked since I was a teenager, I felt the rush of adrenaline exit my system, leaving me depleted. This is too soon, I realized; I’m not ready.

So I texted Paul instead and asked him to meet me behind the building. I had no idea then, but Paul was nearly as nervous as I was, concerned about how I would be in person and how he should treat this new Susannah. Angela, who had visited me recently in Summit, told him that I was significantly improved but still a far cry from the colleague they were used to.

When Paul walked out of the building’s revolving door, he saw me and immediately noticed how much I had physically changed: I looked like a little cherub, he thought, like a ten-year-old version of myself, complete with baby fat.

“So how the fuck are you?” Paul asked, hugging me.

“I’m good,” I heard myself say. I was so nervous that I could only concentrate on the sweat trickling down my lower back, much like when I ran into Kristy with my mom, but this time I didn’t have the buffer of another person to keep the conversation going. It was doubly difficult for me to even focus enough to look him in the eye, let alone prove to him that I would soon be ready to return to work. He cracked some jokes and talked about the job, but I couldn’t keep up. I noticed myself laughing at inappropriate times but then missing the cues to his punch lines. I could tell he was trying hard to deflect the awkward silences by maintaining a happy-go-lucky facade, but he was struggling. My state was a bigger shock than he had anticipated.

“I’m still on a lot of drugs,” I said offhandedly, hoping to provide an explanation for my changed self. “But by the time I come back, I will be off most of them.”

“That’s great. We have your desk all ready for you to return. Do you want to come up and say hi to everyone? I know people miss you.”

“Nah. I’ll do that another day,” I said, looking down at the ground. “I’m not ready.”

We hugged once more. I watched Paul disappear through the revolving doors.

When he got upstairs, he went straight to Angela’s desk. “That’s not the Susannah I know,” he said.

It was an untenable position. As a friend he was deeply concerned about my recovery and my future, but as a boss, he couldn’t help but wonder if I would ever be capable of returning to my duties as a reporter.

Nevertheless, two weeks after my brief reunion with Paul, Mackenzie called me up about an assignment for Pulse, the paper’s entertainment section. As I heard her voice, though, it reminded me of our last interaction: the night in Summit when I had failed to write the article about Gimp, right around when my seizures began in earnest. Along with that memory came a sickening feeling of failure. The self-disgust transformed into joy, though, when I realized she was offering me a new assignment.

“I want you to write about Facebook etiquette,” she said.

I may not have been ready to see all my old coworkers, but I jumped at the opportunity to write an article. I spent a week manically working on it, treating it like social networking’s version of Watergate, calling up sources, friends, and press people to get their perspectives. But once I put all my notes together in one file, I stared at the blinking cursor and couldn’t picture how to begin. The memory of that failed Gimp article only intensified my writer’s block. Would I ever be able to write again?

After I sat in front of that blank screen for nearly an hour, though, the words started to come, slowly at first and then like a fountain. The writing was rough and needed a lot of editing, but I had put fingers to keyboard, and nothing in the world felt better than that.

My article ran on July 28 in the Post’s Pulse section under the headline “Inviting Rudeness.” I remember making a special trip to town to pick up the paper that day and glowing with pride when I opened it and saw my article there. Sure, I’d had hundreds of pieces published before, but this one mattered more than any other. I wanted to show the article to everyone, from the Starbucks baristas who had served me coffee all summer, to the younger girls who rode beside me in that spin class, to the woman at the wedding who had asked if I would ever regain my spark. This article was my redemption. It shouted to the world: I’m back! That was the most excited I had ever been about a story running in my whole career. I wasn’t going to graduate school; I was going back to work.

And a little over a week later I gathered up the courage to do just that—at least for a brief catch-up. Paul and Angela were out that day, so Mackenzie signed me in downstairs, my ID having long ago vanished somewhere in my hospital blackout. She acted as my chauffeur and protector during the visit. Walking me into the tenth-floor newsroom, Mackenzie felt as if she was dropping a toddler off at her first day of kindergarten. I took a deep breath, smoothed out the same black tent dress that I had worn for my first aborted visit, and headed inside.

No one noticed me. They were too transfixed on the Yankees–Red Sox game. Mackenzie led me past my old desk on our way to Steve’s office. “Look who we have here,” Mackenzie said to Steve.

Steve looked up from his screen, and it was clear that at first he didn’t recognize me. Then he said an uncomfortable but warm hello. “So, when are you coming back?”

My face flushed. “Soon, really soon.”

I shifted my weight anxiously from one foot to the next, trying to think of anything to say, but nothing came. When I walked out of his office, my face still flushed by the interaction, a group of reporters who had worked with me on the Sunday paper started to gather. I hadn’t talked to most of them for over six months, and though it couldn’t have been more than six people, it felt like a mob. I became claustrophobic and sweaty. It was hard to concentrate on any one thing, so I looked at my feet.

Sue, the mother hen of the newsroom, gave me a full-bodied hug. She pulled back and said loud enough for the crowd to hear, “Why are you nervous? We all love you.”

The sentiment was kind, but it just made me feel more self-conscious. Was it that obvious that I was uncomfortable? There seemed to be no buffer between what I was feeling and how I appeared. I suddenly felt violently, emotionally naked in front of all these coworkers and friends. I felt like a lab rat, innards exposed, waiting for the impending dissection. The thought jolted me: Would I ever again feel comfortable in this newsroom that basically raised me?

^{CHAPTER 45} THE FIVE W’S

I did eventually return to work, but not until September, about a month after that partial return and almost seven months to the date after I had my breakdown at work. I recall agreeing obediently as Human Resources suggested that they would start me off slowly at first, part time for only a few days a week. Instead I jumped right back in as if I had never been gone. For years I had pursued my goals like a marathoner: steadily running off to my assignments, jogging to a subway to make it in on time for work, eyes and ears always attuned to the next career step. Now I had had the opportunity to stop, collect my breath, and reassess my destinations, but all I wanted to do was keep on moving.

Luckily the Post made it easy for me to dive back in feet first. As Paul had promised, my desk had been left literally untouched: all of my books, documents, and even a paper cup were still sitting there where I had left them.

My first assignments, both briefs, were relatively trivial: one was about a woman voted hottest bartender in New York City and the other a short profile on a drug addict who had just written a memoir. I was being eased back into the daily tasks of writing and reporting, but I didn’t care. This fieriness contrasted with my lackluster performance right before I left work seven months before, when I couldn’t muster up the verve even to interview John Walsh. Now I met any article, no matter how insignificant, with full and eager enthusiasm.

Though coworkers almost certainly walked on eggshells around me that first month, I didn’t notice. I was so focused on the future—on my next byline, on the next assignment—that I couldn’t accurately judge what was going on around me. Because I wasn’t able to type as quickly as I once did, I recorded most interviews. When I review them now, I hear an unfamiliar voice asking the questions: She speaks slowly and ploddingly, sometimes slurring her words. She sounds tipsy. Angela, my bodyguard, discreetly assisted me with stories without making it seem that I needed the help; Paul would invite me over to his desk as he edited, as if teaching me the five W’s of journalism all over again.

It took me over a week to finally get to the task of opening the seven months’ worth of unread mail and e-mails. I hated wondering what my sources thought when their e-mails bounced back or were never returned. Did they think I changed careers or moved to a new job? Did they care? These questions plagued me as I trudged through press releases and piles of books.

I was convinced that I was fully back to normal. In fact, I told Dr. Arslan as much when I saw him just before my first week back at work. At that point, I was on such low doses of medication that it was almost negligible. As we did every two weeks, my parents and I sat down around his desk.

“I’ll ask you this again. How do you feel out of 100?”

I didn’t even hesitate. “100,” I replied with conviction. Both my mom and dad nodded their heads this time. My mom finally agreed with my own assessment.

“Well, then, I have to say that you are no longer interesting,” Dr. Arslan said with a smile, and with that short statement, he released me from his care. He recommended that I continue on one more week of antianxiety and antipsychotic medications and then stop. I no longer needed them, he explained. To me, this meant that he had made the global evaluation that I had fully returned to health. My mom and dad each embraced me, and afterward we had a quiet celebration over eggs and coffee at a nearby diner.

Although we were in high spirits about Dr. Arslan’s appraisal, in reality I still had a long way to go before returning to the person I once was. It’s clear now that I was still in the midst of a very imprecise stage in recovery, which Dr. Dalmau and others are studying closely.

“The patients are back to normal, essentially, by family assessments, by friends’ assessments, and by physicians’ assessments, but they are not back to normal by the same patient’s assessment,” Dr. Dalmau explained to me during one of our early phone interviews. “And this lingers for quite a long time. Recovery takes as much as two to three years, or even longer.”

Patients may be able to return to work, function in society, or even live on their own, but they feel that they have more difficulty doing the things that had once come organically, leaving them essentially still far away from the person they were before the illness.

Right after I returned to work, Dr. Najjar gave me permission to highlight my hair, because the scar, which prevented my hair from growing back as promised, had finally healed enough to stand up to the harsh chemical treatment. I went to the Arrojo salon in SoHo, near the entrance to the Holland Tunnel, where my colorist streaked my hair a bold blond and a stylist cut wispy eye-length bangs that swooped to the right, covering up the bald spot. She asked how I got the scar, so I shared a bit of my story with her. She was so moved that she spent another hour putting my coarse hair (which had changed texture because of the medications) into rollers.

I was feeling like a million dollars as I sauntered down the subway stairway on my way back to Summit until I heard a familiar voice call out my name. I looked around, hoping that I had misheard, to find my ex-boyfriend a few stairs below me. I had not spoken to him since long before my illness.

“I heard what happened,” he said sheepishly. “I’m sorry I didn’t call, but I didn’t think you’d want to hear from me.”

I brushed this comment off, we exchanged a few pleasantries, and we said good-bye. This should have been the perfect moment to run into an ex, fresh out of the salon. But it felt destabilizing, and not in a good way. I could tell that he felt sorry for me, and there’s nothing worse than seeing pity radiating from the eyes of a former lover.

As I replayed the encounter while I waited on the platform, I caught sight of myself in the oncoming train and noticed how frizzy my curled hair looked, how puffy my face was, and how chubby my frame had become. Would I ever feel comfortable in my own skin again? Or would this self-doubt follow me around forever?

I was nothing like the confident “pre-” person this man had once dated, and I hated myself for how drastically I had changed.

^{CHAPTER 46} GRAND ROUNDS

Less than a month after I returned to work at the Post, my mother received an e-mail from one of Dr. Najjar’s assistants, inviting us to attend his lecture on anti-NMDA-receptor autoimmune encephalitis at NYU’s grand rounds, the medical school ritual when a doctor presents cases to students and peers.

That late September morning, the commuter traffic was bumper-to-bumper heading from New Jersey into midtown and we were running late. My mom, Allen, Stephen, and I ran to the lecture hall, where my dad, Angela, and Lauren, my friend and the Post’s managing editor, were waiting by the entranceway.

“I think it started already,” Angela said as we entered the auditorium. The hundred or so seats were filled with white lab coats, all intently watching Dr. Najjar, who was onstage speaking rapidly about “autoimmune encephalitis.”

We had missed the introduction of SC, a twenty-four-year-old patient, so I didn’t yet realize he was talking about me as he listed all the tests that had come back clean, including three MRIs, hematology and urine toxicology screenings, and blood work. He added that the patient’s cerebrospinal fluid had higher-than-normal white lymphocytes, and then discussed his decision to move forward with a brain biopsy when they felt out of other options.

“Is he talking about me?” I asked my parents.

My mom nodded. “I think so.”

Dr. Najjar cut to a magnified picture of a biopsied brain sample. It was stained mauve with bluish-purple spots surrounding a blood vessel. The dark spots, he explained, were inflammatory microglia cells.

“He’s talking about my brain,” I whispered, although I didn’t understand then what these slides portrayed. All I knew was that a very intimate part of myself was on display in front of a hundred strangers. How many people can say that they’ve allowed others to literally see inside their heads? I touched my biopsy scar as Dr. Najjar continued to talk about my brain tissue.

He then clicked through to another slide, one that looked like a delicate, chain-link necklace covered with lilac and agate gemstones swooping down in a U shape.

Dr. Najjar explained that the brain biopsy picture showed a blood vessel under attack by lymphocyte cells. As he pointed out, however, there have been only a handful—ten or fewer—of brain biopsies conducted in those with anti-NMDA-receptor encephalitis, so these slides offer a rare and informative look at a sick brain we know very little about.

He ended the lecture with a final statement: “I’m proud to say that this patient is back to normal and is currently back to work at the New York Post.”

Angela nudged me, Lauren smiled, and Stephen and my parents glowed.

When we got back to the office that day, Angela mentioned the presentation to our editors, Steve and Paul. Steve was intrigued and called me into his office.

“Angela tells me that she went to a meeting on your illness,” Steve said. “Would you be willing to write a first-person piece about it?”

I nodded emphatically. I had been hoping my editors would find my story interesting enough for an article, and I was eager to finally indulge my reporting instincts and buckle down to research it.

“Great. Can you get it to us by Friday?”

Today was Tuesday. Friday felt soon, but I was determined to make it happen. It was thrilling, if somewhat frightening and dizzying, to think of sharing those confusing months with the world. Most of my colleagues were still in the dark about what had happened during my extended absence (as, in a sense, was I), and it worried me to think that this story might undo everything I had accomplished in presenting myself as a professional over the past few weeks back at work. But it was irresistible: Now I had the opportunity to uncover that lost time and prove to myself that I could understand what had happened inside my body.

^{CHAPTER 47} THE EXORCIST

With those conflicting feelings percolating in my mind, I placed my reporter’s cap firmly back on and interviewed my family, Stephen, Dr. Dalmau, and Dr. Najjar to get a portrait of my disease and its larger-scale implications.

What I was almost immediately drawn to is perhaps the biggest mystery: How many people throughout history suffered from my disease and others like it but went untreated? This question is made more pressing by the knowledge that even though the disease was discovered in 2007, some doctors I spoke to believe that it’s been around at least as long as humanity has.

In the late 1980s, French Canadian pediatric neurologist Dr. Guillaume Sébire noticed an unusual pattern among six children he treated from 1982 to 1990.⁵¹ They all had movement disorders, including involuntary tics or excessive restlessness, cognitive impairments, seizures, normal CT scans, and negative blood work results. The children were diagnosed with “encephalitis of an unknown origin” (or what was colloquially known as the Sébire syndrome), a disease that lasted on average ten months. Four of the six children made what could be called a full recovery. His hazy description of the disease persisted for another two decades.

An earlier paper, written in 1981 by Robert Delong and colleagues, described “acquired reversible autistic syndrome” in children.⁵² The disease presented like autism, but two of the three children studied (a five-year-old girl and a seven-year-old boy) recovered fully, while an eleven-year-old girl continued to endure severe memory and cognitive deficits, unable to remember three words provided to her after only a few minutes had elapsed. Now, studies show that roughly 40 percent of patients diagnosed with this disease are children (and this percentage is growing), but children present the disease differently from adults: afflicted children exhibit behaviors such as temper tantrums, mutism, hypersexuality, and violence.⁵³ One parent described how her child tried to strangle her infant sibling; another heard low grunting noises from their normally angelic daughter; and another child clawed at her own eyes to communicate the inner turmoil that her toddler vocabulary could not convey. The disease in children has often been misdiagnosed as autism, but depending on where and when the person lived, it might have been described as supernatural, even something evil.

Evil. To the untrained eye, anti-NMDA-receptor autoimmune encephalitis can certainly appear malevolent. Afflicted sons and daughters suddenly became possessed, demonic, like creatures out of our most appalling nightmares. Imagine a young girl who, after several days of full-bodied convulsions that sent her flying into the air and off her bed—and after speaking in a strange, deep baritone—contorted her body and crab-walked down the staircase, hissing like a snake and spewing blood.

This chilling scene is, of course, from the unedited version of the blockbuster film The Exorcist, and though fictionalized, it depicts many of the same behaviors that children suffering from anti-NMDA-receptor autoimmune encephalitis do. The image is not as exaggerated as we might think. (Stephen, for one, can no longer watch The Exorcist; it brings him right back to those strange “panic attacks” I experienced in the hospital, and to my first seizure as we watched TV on the pullout couch.) In 2009, a thirteen-year-old girl from Tennessee displayed a “range of emotions and symptoms that varied by the hour, at times mirroring schizophrenia, and, at other times, autism or cerebral palsy.”⁵⁴ She lashed out violently and would bite her tongue and mouth. She once insisted on crab-walking across the hospital floor. She also spoke in a bizarre, Cajun-inflected accent, according to the Chattanooga Times Free Press, which detailed her experience with anti-NMDA-receptor autoimmune encephalitis and subsequent recovery.

Many parents report that their children start speaking in a garbled foreign language or with an unusual accent, just like when the fictional Regan in The Exorcist begins to speak fluent Latin with the priest who has come to exorcise her. Likewise, those who suffer from this type of encephalitis will display what is known as echolalia, the repetition of sounds made by another person.⁵⁵ That would explain the sudden ability to “speak in tongues,” though in real life those who are suffering from the illness typically do so illogically, not fluently.

How many children throughout history have been “exorcised” and then left to die when they did not improve? How many people currently are in psychiatric wards and nursing homes denied the relatively simple cure of steroids, plasma exchange, IVIG treatment, and, in the worst cases, more intense immunotherapy or chemotherapy? Dr. Najjar estimates that 90 percent of people suffering from this disease during the time when I was treated in 2009 went undiagnosed. Although this number is probably decreasing as the disease becomes better known, there are still people who are suffering from something treatable and not receiving the proper intervention. I couldn’t forget how close I had come to such a dangerous edge.

When I contacted her about my research, Dr. Dalmau’s colleague Dr. Rita Balice-Gordon brought up the old Indian proverb, often used by neuroscientists studying the brain, about six blind men trying to identify an elephant, offering it as a way of understanding how much more we have to learn about the disease.

Each man grabs hold of a different part of the animal and tries to identify the unnamed object. One man touches the tail and says, “rope”; one touches a leg and says, “pillar”; one feels a trunk and says, “tree”; one feels an ear and says, “fan”; one feels the belly and says, “wall”; the last one feels the tusk and is certain it’s a “pipe.” (The tale has been told so many times that the outcomes differ widely. In a Buddhist iteration, the men are told they are all correct and rejoice; in another, the men break out in violence when they can’t agree.)

Dr. Balice-Gordon has a hopeful interpretation of the analogy: “We’re sort of approaching the elephant from the front end and from the back end in the hopes of touching in the middle. We’re hoping to paint a detailed enough landscape of the elephant.”

Two particular fields of study, schizophrenia and autism, will likely gain the most from this landscaping of the elephant. Dr. Balice-Gordon believes that a percentage, albeit a small one, of those diagnosed with autism and schizophrenia might in fact have an autoimmune disease. Many children ultimately diagnosed with anti-NMDA autoimmune encephalitis were first determined to be autistic. How many children originally diagnosed with autism weren’t able to find their autoimmune diagnosis?

As she explained, out of a hypothetical 5 million people diagnosed with autism, 4,999,000 of them might indeed be autistic. But what about that tiny slice that in fact have anti-NMDA-receptor encephalitis or one of the other related disorders, and could be effectively treated by looking for a peripheral tumor or antibodies in the brain?

The same goes for schizophrenia. Many of the adults ultimately diagnosed with anti-NMDA-receptor autoimmune encephalitis first receive the diagnosis of schizophrenia (or other related mental disorders, such as schizoaffective disorder, in my case). Statistically there must be some people who receive a diagnosis of psychosis or schizophrenia and never get the proper help. Even if it’s only 0.01 percent of patients, it’s still too many.

Unfortunately, for most people suffering from severe psychiatric conditions, it’s nearly impossible to give everyone the proper testing to diagnose and treat autoimmune diseases. PET scans, CT scans, MRIs, IVIG treatment, and plasmapheresis can cost upwards of thousands of dollars each.

“How practical would this screening be?” asks professor of psychology Philip Harvey. “Lumbar punctures for everyone? That’s an impossibility.”

It had cost $1 million to treat me, a number that boggles the mind. Luckily, at the time I was a full-time employee at the Post, and my insurance covered most of the exorbitant price tag. I also had a support system in place. My family was in the fortunate situation of being able to pay out of pocket anything that the insurance company wouldn’t cover or reimburse. Unfortunately, there’s often not the same safety net in place for those with lifelong psychiatric conditions, who are unable to hold jobs and must make do with disability payments and Medicaid.

But this is all the more reason that psychiatrists and neurologists are finding ways to break down the barriers set in place between psychology and neurology, urging for one uniform look at mental illnesses as the neurochemical diseases that they are, and, in the process, perhaps getting more grant money to study the overlap.

“One thought is that this is just a coincidence, that [NMDA-receptor encephalitis] and schizophrenia are unrelated. But Mother Nature doesn’t work that way. The best hypothesis for schizophrenia is that at least some of those cases can also be explained by a [similar] dysfunction,” said Dr. Balice-Gordon.

Dr. Najjar, for one, is taking the link between autoimmune diseases and mental illnesses one step further: through his cutting-edge research, he posits that some forms of schizophrenia, bipolar disorder, obsessive-compulsive disorder, and depression are actually caused by inflammatory conditions in the brain.

Dr. Najjar is in the midst of groundbreaking work that might finally sever the barrier separating immunology, neurology, and psychiatry. A recent case of his centers on a nineteen-year-old woman who had been diagnosed with schizophrenia by six leading psychiatrists over the course of two years.⁵⁶ When she was seventeen, her symptoms began with auditory hallucinations—“people putting me down and thinking they’re better than I am,” she told Dr. Najjar—followed by visual ones. Late at night, she would see “people’s faces on the walls.”

Her parents did not believe the schizophrenia diagnosis and eventually made their way to New York University, where they met with Dr. Najjar. He ordered a right frontal brain biopsy—something he had learned from my case—that showed the presence of inflammation and antibodies targeting the glutamate receptors in the brain. She was treated with steroids, plasma exchange, and IVIG treatment, which helped with the hallucinations and paranoia, but because the treatment was started so late, it is unclear if she ever will return to her former self.

“Just because it seems like schizophrenia doesn’t mean that it is,” Dr. Najjar told me. “We have to keep humble and keep our eyes open.”

As I researched my article, I was curious to get the perspective of Dr. Bailey, the neurologist who had asserted that my problems stemmed from alcohol withdrawal and stress, to see what he thought about the ultimate diagnosis. When I reached him by phone, though, it turned out he still had never heard of the illness, even though my diagnosis had been discussed in almost every major medical journal, including the New England Journal of Medicine, and the New York Times.

In the spring of 2009, I was the 217th person ever to be diagnosed with anti-NMDA-receptor autoimmune encephalitis. Just a year later, that figure had doubled. Now the number is in the thousands. Yet Dr. Bailey, considered one of the best neurologists in the country, had never heard of it. When we live in a time when the rate of misdiagnoses in the United States has shown no improvement since the 1930s, the lesson here is that it’s important to always get a second opinion.⁵⁷

While he may be an excellent doctor in many respects, Dr. Bailey is also, in some ways, a perfect example of what is wrong with medicine. I was just a number to him (and if he saw thirty-five patients a day, as he told me, that means I was one of a very large number). He is a by-product of a defective system that forces neurologists to spend five minutes with X number of patients a day to maintain their bottom line. It’s a bad system. Dr. Bailey is not the exception to the rule. He is the rule.

I’m the one who is an exception. I’m the one who is lucky. I did not slip through a system that is designed to miss cases just like my own—cases that require time and patience and individualized attention. Sure, when I talked to him, I was shocked that he knew nothing about the disease, but that wasn’t the really shocking part; I realize now that my survival, my recovery—my ability to write this book—is the shocking part.

Yet even after all of this, the most harrowing part of researching and writing the article about my illness was something that I had in no way prepared for: handing over the EEG tapes to my paper’s photo editor, who wanted to use some images of me in the hospital for the piece. I hadn’t yet watched them and at that point did not plan to.

But when he had trouble opening up the disk, he asked me for help. I got it to work and in the process caught a fleeting glimpse of myself in the hospital gown. I was outrageously skinny. Crazed. Angry. Reaching out aggressively toward the camera.

I shuddered and turned away from the image, trying to concentrate on breathing as I forced a smile. I had the intense urge to grab the videos from him and burn them or at least hide them away, safe from view. Even after everything I’d done and learned, maybe I wasn’t ready for this yet. Yet I felt compelled to keep watching.

I had enough distance from my own madness to view it as a hypothetical. But watching myself on screen, up close and personal, obliterated that journalistic distance. The girl in the video is a reminder about how fragile our hold on sanity and health is and how much we are at the utter whim of our Brutus bodies, which will inevitably, one day, turn on us for good. I am a prisoner, as we all are. And with that realization comes an aching sense of vulnerability.

That night I went home and passed a night of fitful dreams that blurred together. In one, I was with my mom and Allen in Summit.

“Remember when you were in the hospital,” my mom said, laughing really hard. “You were so crazy that…”

She was laughing so hard that she couldn’t complete the sentence.

“What happened?” I asked, grabbing a notebook and a tape recorder. She was laughing, gulping in air, too hysterical to talk, still laughing.

There was a second dream that blurred together with this first one. In it, I was on the epilepsy floor, but I was completely naked and in search of a bathroom to hide in. I heard a group of nurses walk by and tried to hide, but as I turned the corner, all of a sudden I saw Adeline, the Filipino nurse from the floor. Now I was fully clothed.

“Susannah,” she said. “I hear you’re not taking care of yourself. What a shame.”

Though I hesitate to draw any Freudian meanings from these dreams, they clearly represent the anxiety I felt about how I behaved in the hospital and how others perceived me during my recovery. This was not where I wanted to be psychologically as I started working on my first major assignment back at the Post. I didn’t want to be frazzled and upset, and these tapes had obviously upset my internal balance.

But, ready or not, on Sunday, October 4, the biggest story of my career ran in the Post under the headline: “My Mysterious Lost Month of Madness: I was a happy 24-year-old suddenly stricken by paranoia and seizures. Was I going crazy?”

^{CHAPTER 48} SURVIVOR’S GUILT

It is one thing to research your own condition and think abstractly about the other people who have suffered from the same condition; it’s another thing entirely to get to know the people themselves who have run the risk of being lost in the system.

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 Post article ran, my inbox filled with hundreds of e-mails from mothers and fathers whose children had recently been diagnosed with all kinds of autoimmune diseases, women my age in the throes of the same disease, and people who suspected that their loved ones had it and wanted information on how best to treat it. Like any other major trauma, this disease bursts you wide open, and after surviving so much, you’re finally prepared to give back and willing to help anyone else who may be going through similar upheavals. But being so exposed, like a gushing wound, leaves you unprotected from the elements.

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: Why me? Why did my antibodies decide to attack? Why was I able to then recover?

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.

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?

To this day, I struggle with distinguishing fact from fiction. I even asked my mother if Allen had actually called me a slut in the car that day.

“Are you kidding?” my mom asked, hurt that I could even ask. “He would never do that.”

She was right; logically, I understood he would never say such things. Yet why did I continue to believe my own bizarre memory over a lifetime of proof? And why did these specific memories remain intact? If I didn’t have a mental illness, how did these hallucinations come about?

Though hallucinations, paranoia, and an illusory grasp on reality are the hallmarks of those with schizophrenia, you don’t need to suffer from a mental illness to induce these symptoms. In 2010, a Cambridge University study helped to illuminate the thought processes of people with schizophrenia by injecting healthy student volunteers with the drug ketamine—which blocks the same NMDA receptors in the brain that were affected by my illness—and conducting what is known as the “rubber hand illusion” on them.⁶¹ Fifteen students were asked to place one hand on a table beside a fake rubber hand, first after they had been injected with ketamine and then at a later sitting with a placebo. During the experiment, the real hand was hidden from view as two paintbrushes, attached to motors, stroked the index fingers of both hands. Though subjects on a placebo could also be tricked by the illusion, those on ketamine sooner and more intensely believed that the rubber hand was their own. The experiment showed that the ketamine injections, for whatever reason, helped break down the subjects’ sense of reality, making things that would ordinarily seem impossible to a rational mind, like having the ability to age someone with your mind, suddenly seem possible.

There have been decades of research, like the rubber hand study, on the phenomenon, yet hallucinations continue to intrigue researchers, and there’s still no consensus about their basic mechanisms and why they exist.

All we know is that they occur when the brain perceives an outward sensation—vision, sound, or touch—but there is no corresponding external source; it is a failure to distinguish between what is external and what is internal, referred to as self-monitoring theory.⁶²

In the same vein, it is precisely because these hallucinations are self-generated that they are so believable and vividly remembered, explained psychology professor Dr. Philip Harvey. It’s called the generation effect:⁶³ “Because those hallucinations were self-generated,” Dr. Harvey told me, “you were better able to remember them.”

Although people with schizophrenia exhibit cognitive and memory defects, they can remember just as well as healthy people if they are forced to structure the memory themselves. For example, those with schizophrenia best remember lists of words when they are asked to make a story out of the words rather than straightforward and unaided remembering.

Couple this with the fact that these head trips were intensely emotional and would therefore be tagged as important by the hippocampus and amygdala, both of which were affected by my disease. The amygdala, an almond-shaped structure situated atop the hippocampus, located at the sides of the head above the ears in the temporal lobes, is a structure intimately involved in emotion and memory, helping to choose which memories should be kept and which should be discarded, based on which events have traumatized or excited us.⁶⁴ The hippocampus tags the memory with context (the hospital room and the purple lady, for example), and the amygdala provides the emotion (fear, excitement, and pain).

When the amygdala stamps the experience with high emotional value, it’s more likely to be preserved, a process called encoding, and eventually made into a memory, called consolidation. The hippocampus and amygdala help encode and consolidate the experience, or make it into a memory that can be retrieved later.⁶⁵ When any part of this elaborate system is compromised, the memory may not be formed.

Therefore I will likely never forget the time I could age the psychiatrist with my mind, which just shows how fallible memory is. This realization would continue to haunt me.

For instance, I recall with absolute certainty the time I woke up bound by restraints in the hospital’s four-person AMU room, watched over by the “purple lady,” the scene that opens this book. I vividly remember looking down at my right hand and seeing an orange band that read FLIGHT RISK. My family and friends remembered the same thing, so I took this for granted as a truth. The FLIGHT RISK band to me is a fact.

Yet it turns out it was imaginary. When I spoke to nurses and doctors on my floor, they told me that those bands don’t exist. One nurse suggested, “You probably had a FALL RISK band. It wasn’t orange; it was yellow.” My EEG tapes confirmed this. There is no such thing as an orange FLIGHT RISK band.

“When people think about a past event, they can incorporate new information in their recollection, making a new memory,” explained psychologist Elizabeth Loftus. Dr. Loftus has spent a lifetime working on the assumption that memory is often inaccurate.⁶⁶ In a 1978 study, now presented in most Psych 101 classes, Dr. Loftus showed participants slides of a red car hitting a pedestrian. Although the photographs established that the car had encountered a stop sign, when Dr. Loftus questioned the subject, she inserted intentionally misleading questions, like, “What color was the yield sign?” The study showed that subjects given leading information were more likely to answer incorrectly than those who weren’t. These findings have challenged the power of eyewitness testimony.

A team of New York–based neuroscientists in 2000 demonstrated this assumption in lab rats by testing to see if memories are constantly altered each time we recall them.⁶⁷ The team uncovered another step in the memory process, called reconsolidation: when a memory is recalled, it’s essentially remade, allowing new (and sometimes wrong) information to filter in. This is normally useful because we need to be able to update our past experiences to reflect present information, but it sometimes creates devious inaccuracies.

Psychology professor Dr. Henry Roedigger calls what happened with the FLIGHT RISK band a form of social contagion: If one person remembers incorrectly and shares this with others, it can spread, like an airborne illness straight out of the movie Outbreak.

Did I harbor this false memory? Was I the one who spread it? I am sure I remember vividly seeing the words FLIGHT RISK on my arm. Or am I?

^{CHAPTER 52} MADAME X

“Our brains make little stories,” explained Dr. Chris Morrison, the neuropsychologist who had tested me at the hospital, when I interviewed her in December 2010. “It’s possible that when you rehearse things so many times, you start to internalize and believe that you were there. You integrate fragments, scenes of things that you could not truly remember.” Like the FLIGHT RISK band.

Similarly, a retrieval mechanism is triggered in the brain when we see something recognizable. Smells or images will instantly transport us back in time, unlocking forgotten memories. A year after I left the hospital, my friend Colleen took me to a nearby pub called Egan’s.

The name jarred me. Had I been there before? I couldn’t remember.

We walked into the upscale Irish pub and headed toward the bar. Nope. I hadn’t been there. But when I stepped into the central dining room area and caught sight of a magnificent low-hanging chandelier, I knew I had been here before, right before I got sick, with Stephen, his sister, and her husband before that Ryan Adams show. Not only did I remember being here, but I also remembered what I ordered: fish and chips.

Glistening lard. Piles of gluttonously rich, fat-encrusted french fries. I fought the urge to throw up on the table. I tried to make conversation, but all I could concentrate on was the glistening fish and chips.

I couldn’t believe how vividly it came rushing back to me. What else had I forgotten? What else would come back, knocking me off balance and reminding me how tenuous my grip on reality was?

Almost every day, something reemerges. It can be something insignificant, like the moss-colored socks at the hospital, or a simple word, like the time in the drugstore when I saw a box of Colace, the stool softener I had taken at the hospital, and the memories of Nurse Adeline came rushing in with it. During these moments, I can’t help but think that the other Susannah is calling out to me as if to say, I may be gone, but I’m not forgotten. Like the girl in the video: “Please.”

But with every memory I recapture, I know there are hundreds, thousands even, that I cannot conjure up. No matter how many doctors I speak with, no matter how many interviews I conduct or how many notebooks I scavenge, there will be many experiences, bits of my life that have vanished.

One morning, a year after I moved in with Stephen, I finally got around to unpacking boxes from my old apartment. I opened a small box filled with an old, broken hair dryer, some curling irons, a few notebooks, and a small brown paper bag. Inside the paper bag was a postcard of a raven-haired woman. It was a famous painting, and I knew I had seen it before, but it held no context for me:

The woman stands majestically in profile, which exaggerates her downward-sloping nose and long forehead. Her pale skin contrasts sharply against the blackness of her evening dress, which leaves her shoulders bare, only two jeweled straps holding the dress in place. She supports her unnatural pose by leaning the weight of her body on the tips of her right fingers, which are propped against a wooden table; her other hand lifts the hem of her skirt in a queenly fashion. It’s a seductive and artificial pose. To me, she looks at once both haughty and sick, as if too arrogant to admit that she is deathly ill.

There was something oddly magnetic about this woman, so different from the entirely alien push-and-pull mixture of attraction and repulsion that I felt with Dr. Bailey’s distorted version of a human form, that Carota picture. Taking in this woman, an ancient feeling surged through me, a prickly, exhilarating sensation that I could trace to my childhood. After a moment, I found the source: I had the same feeling when I used to snoop through my mom’s closet when I was a child. I stared at the picture for several more minutes, trying to understand the link between the picture and that forgotten memory, before I could pry myself away long enough to turn the postcard over.

It was John Singer Sargent’s Madame X, from 1884. Also in the bag was a receipt for the date of purchase. I had bought the $1.63 postcard at the Metropolitan Museum of Art on February 17, 2009, shortly before my first breakdown at work. There was not one shred, one iota, one shard of memory that connected me with that museum visit. I could not recall going to the Met that February day. I could not remember standing in front of the painting or what had originally engrossed me about this powerful yet vulnerable woman.

Or maybe on some level, I can remember. I like to believe what Friedrich Nietzsche said: “The existence of forgetting has never been proved: we only know that some things do not come to our mind when we want them to.”

Maybe it’s not gone but is somewhere in the recesses of my mind, waiting for the proper cues to be called back up. So far that hasn’t happened, which just makes me wonder: What else have I lost along the way? And is it actually lost or just hidden?

Some buried feeling unites me fiercely with that painting. I have since mounted it on the wall above me in the room where I write, and often I find myself staring off at it when I’m lost in thought. Maybe, even though “I” was not there to experience it for the first time, some part of me nevertheless was present during that museum visit, and maybe for that entire lost month. That idea comforts me.

^{CHAPTER 53} THE PURPLE LADY

Nearly two years after my release from the epilepsy floor at New York University Langone Medical Center, I return for a visit.

I walk up First Avenue toward the purple NYU sign that hangs on the massive gray hospital building in the distance. I press against the sluggish revolving door, made to move slowly to accommodate those in wheelchairs, which opens up into the hospital’s modern lobby. Doctors in white lab coats walk briskly past patients and various drug salesmen who look like aged frat boys. Somber visitors holding plastic “Patient’s Belongings” bags disappear into the background. Automatic Purell hand sanitizer dispensers dot the entranceways. I walk past the admitting station where I had my seizure, though all I can remember from that day is the hot cappuccino I’d bought moments before I was admitted.

I get on an elevator that takes me to the twelfth floor. My thoughts wander to my parents and Stephen, who took this very trip several times a day for a month. Incredible.

Strangely, though, everything looks unfamiliar. None of the nurses recognize me. I walk through the corridor and past the nurses’ station. No one looks up. A man sprawled out on the hallway floor is making a gurgling sound. The nurses behind the station run past me toward him. I follow behind them. The older man thrashes, emitting primitive guttural grunts. A team of nurses holds him down as a security guard lifts him onto a gurney. The man’s gown is open below his belly button. I turn away from the sight. A nurse in green scrubs walks by me.

“Is this the epilepsy unit?” I ask her.

“No. You’ve got the wrong floor. This is the east wing. Epilepsy is on the west wing, same floor.” Well, at least this time it wasn’t my memory playing tricks on me.

I return to the lobby and take another elevator up, but again find, to my disappointment, that nothing looks familiar. Then the smell hits me: a combination of alcohol-soaked cotton swabs with a sweet muskiness. This is the place; it has to be. Then I see her. The purple lady. She stares at me. But this time it’s not with horror or pity or fear. In her eyes I’m a normal, healthy person, just someone whose face she is struggling to place.

I smile. “Do you remember me?” I ask.

“I’m not sure,” she admits. There’s that same Jamaican accent. “What’s your name?”

“Susannah Cahalan.”

Her eyes widen. “Oh, yes, I remember you. I do remember you.” She smiles. “I’m sure it’s you, but you look so different. You look all better.”

Before I know it, we’re embracing. The scent of her body is like Purell. Images flood through my mind’s eye: my father feeding me oatmeal, my mom wringing her hands and looking nervously out of the window, Stephen arriving with that leather briefcase. I should be crying, but I smile instead.

The purple lady kisses me softly on the cheek.