Brain on Fire (36 page)

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.
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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?

T
he 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.
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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.
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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:
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“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.
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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.
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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.
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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.
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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?