Brain on Fire (27 page)

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.

“W
hat 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.”

W
hen 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.