Brain On Fire: My Month Of Madness Part 14

I shared a room with an obese black woman named Debra Robinson. Though she suffered from diabetes, the doctors believed that her underlying issues actually stemmed from colon cancer, but they still hadn't confirmed the theory. Debra was so overweight that she was unable to leave her bed and go to the bathroom. Instead, she did her business in a bedpan, periodically filling the room with all sorts of putrid smells. But she apologized every time, and it was impossible to dislike her. Even the nursing staff adored her.

The plasma exchange was done through a catheter inserted directly into my neck. "Oh my G.o.d," Stephen said, as he watched the nurse insert the needle. It made a "pop" where it pierced my jugular vein. Holding the catheter in place, the nurse spread heavy tape, the consistency of masking tape, around the catheter to keep it upright, jutting out perpendicularly from the right side of my neck. The tape was so harsh that it left red welts on my skin. Though the catheter was hideously uncomfortable, it had to stay in place for the whole week, over the course of my treatment.

The plasma-exchange process originated with a Swedish dairy cream separator created in the late 1800s that sets apart curds from whey.46 Scientists were so inspired by this simple machinery that they attempted to use it to separate plasma (the yellow-colored liquid that suspends cells and contains antibodies) from blood (which contains the red and white blood cells). The blood streams into the cell separator, which, like a spin dryer, shakes up the blood, cleaving it into those two components-the plasma and the cells of the blood. Then the machine returns the blood to the body and replaces the original plasma-which is full of the harmful autoantibodies-with a new, protein-rich fluid that does not contain antibodies. Each process takes about three hours. The doctors had prescribed five sessions. Scientists were so inspired by this simple machinery that they attempted to use it to separate plasma (the yellow-colored liquid that suspends cells and contains antibodies) from blood (which contains the red and white blood cells). The blood streams into the cell separator, which, like a spin dryer, shakes up the blood, cleaving it into those two components-the plasma and the cells of the blood. Then the machine returns the blood to the body and replaces the original plasma-which is full of the harmful autoantibodies-with a new, protein-rich fluid that does not contain antibodies. Each process takes about three hours. The doctors had prescribed five sessions.

My friends were allowed to come and go as they pleased during this second stay, and they all received specific requests from me: Hannah brought more magazines; my high school friend Jen brought a pumpernickel bagel with b.u.t.ter and tomatoes; and Katie brought Diet c.o.kes.

On my fourth day in the hospital, Angela arrived for a visit, but she was still startled by how terrible I looked. She later e-mailed Paul that I was "pale, thin, out of it... Pretty scary." I still had a long way to go.

It is my last night in the hospital. My roommate Debra just got news: she does have colon cancer, but they caught it early. Debra is celebrating with the nursing staff. They came by to pray with her. I understand her relief, how important it is for your illness to have a name. Not knowing is so much worse. As she prays with the nurses, Debra repeats over and over again, "G.o.d is good, G.o.d is good."

As I reach to turn out the lights, I feel compelled to say something to her.

"Debra?"

"Yes, dear?"

"G.o.d is good, Debra. G.o.d is good."

The next morning I was released again, and Stephen took me out on a drive in my mom and Allen's car around Summit. We drove past an old mental inst.i.tution called Fair Oaks, now a drug rehab center; the high-school lacrosse field where I once played goalie; and Area 51, a house on the outskirts of Summit where our mutual friends lived and partied years ago. When we reached a red light, Stephen turned on the CD player. The tinkling of Spanish flamenco guitars drifted through the speakers.

"All the leaves are brown and the sky is gray. I've been for a walk on a winter's day." He recognized the song; it was one of his favorites, a song that brought him back to his childhood, when his mother used to listen to the Mamas and the Papas with him on the way to run errands. "Stopped into a church, I pa.s.sed along the way. I got down on my knees and I began to pray."

As if on cue, Stephen and I together belted out the chorus, "California dreamin' on such a winter's day!" For a moment, Stephen took his eyes off the road and glanced at me in astonishment and joy. Finally, here was the confirmation he had been waiting for all these weeks: I was still in there.

PART THREE

IN SEARCH OF LOST TIME

I had only the most rudimentary sense of existence, such as may lurk and flicker in the depths of an animal's consciousness; I was more dest.i.tute of human qualities than the cave-dweller; but then the memory, not yet of the place in which I was, but of various other places where I had lived, and might now very possibly be, would come like a rope let down from heaven to draw me up out of the abyss of not-being, from which I could never have escaped by myself.

MARCEL PROUST, Swann's Way: In Search of Lost Time Swann's Way: In Search of Lost Time

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. be her. Without this electronic evidence, I could never have imagined myself capable of such madness and misery. 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 pa.s.senger 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 pa.s.senger 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 fl.u.s.tered. 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 acc.u.mulated 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 antic.i.p.ated 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 gla.s.ses, 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 pa.s.sed 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, 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. 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 canva.s.sed 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 ma.s.sage 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, 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! 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. 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-crus.h.i.+ng 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 s.h.i.+ne 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, 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 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 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 Friends episodes, and the drives to the ice cream parlor, I spent most of my time in a state of perpetual antic.i.p.ation as I waited like a puppy for Stephen's arrival on the commuter train to Summit. episodes, and the drives to the ice cream parlor, I spent most of my time in a state of perpetual antic.i.p.ation 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 pa.s.senger side window did I finally recognize him: He had shaved his beard and cut his s.h.a.ggy, 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 grat.i.tude 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 see me somewhere inside. me somewhere inside.