Brain on Fire: My Month of Madness

by Susannah Cahalan

The healthy brain is a symphony of 100 billion neurons, the actions of each individual brain cell harmonizing into a whole that enables thoughts, movements, memories, or even just a sneeze. But it takes only one dissonant instrument to mar the cohesion of a symphony. When neurons begin to play nonstop, out of tune, and all at once because of disease, trauma, tumor, lack of sleep, or even alcohol withdrawal, the cacophonous result can be a seizure.

A small subset of those with temporal lobe epilepsy—about 5 to 6 percent—report an out-of-body experience, a feeling described as being removed from your body and able to look at yourself, usually from above. There I am on a gurney. There I am being loaded into the ambulance as Stephen holds my hands. There I am entering a hospital. Here I am. Floating above the scene, looking down. I am calm. There is no fear.

We are, in the end, a sum of our parts, and when the body fails, all the virtues we hold dear go with it.

I knew immediately that there were too many people. They all stared at me. They whispered to each other, “Susannah, Susannah.” I could hear it. My breath got shallower, and I began to sweat.

Whenever anybody asked me what I wanted, my answer was always the same: “Apples.” I expressed a constant desire for them, so everyone who visited brought apples: green ones, red ones, tart ones, sweet ones. I devoured them all. I don’t know what prompted this fixation; perhaps some metaphorical urge to “have an apple a day, and keep the doctor away.” Or maybe the urge was more basic: apples contain flavonoids, which are known to have anti-inflammatory and antioxidant effects on the body. Was my body communicating something that my mind—and my doctors—didn’t yet understand?

Or, as author William F. Allman put it in Apprentices of Wonder: Inside the Neural Network Revolution, “The brain is a monstrous, beautiful mess.”

By the end of that year, he came home with a glowing, straight A report card. His father was apoplectic. “You cheated,” Salim said, raising his hand to punish his son. The next morning, his parents confronted the teacher. “My son doesn’t get these types of grades. He must be cheating.” “No, he’s not cheating. I can assure you of that.” “Then what kind of school are you running here, where a boy like Souhel can get these kinds of grades?” The teacher paused before speaking again. “Did you ever think that you might actually have a smart son? I think you need to believe in him.”

The blood-brain barrier (BBB) is a dense patchwork quilt of vessels that serve as gates, regulating the passage of substances, like bacteria, chemicals, and drugs, from the blood to the brain. Researchers have discovered that the BBB does allow for certain B-cells and T-cells to squeeze through, in a process called diapedesis, to do regular “checkups.” But this was no routine checkup. The immune cells it had let through, which were supposed to protect the body, were in mid-blitz. This was the evidence Dr. Najjar had needed: I was in the grip of some kind of autoimmune disease.

NMDA (N-methyl-D-aspartate acid) receptors are vital to learning, memory, and behavior, and they are a main staple of our brain chemistry. If these are incapacitated, mind and body fail. NMDA receptors are located all over the brain, but the majority are concentrated on neurons in the hippocampus, the brain’s primary learning and memory center, and in the frontal lobes, the seat of higher functions and personality. These receptors receive instructions from chemicals called neurotransmitters. All neurotransmitters carry only one of two messages: they can either “excite” a cell, encouraging it to fire an electrical impulse, or “inhibit” a cell, which hinders it from firing. These simple conversations between neurons are at the root of everything we do, from sipping a glass of wine to writing a newspaper lead.

“Mom,” I whisper. “He’s going to leave me for her. Please come home. Please come home and stop them.” I pace around and watch him from the kitchen window that looks out on the patio. He catches my eye and waves. Why does he want to be with a sick girl? What is he doing here with me? I look at him waving, certain that I have lost him forever.

“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.

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.

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.

effete (adj): no longer fertile; having lost character, strength, vitality; marked by weakness or decadence Teratogenic (adj): of, relating to, or causing developmental malformations Lazarette (noun): sick room

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?

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.

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.

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.

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.

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.

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.”

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: “Because those hallucinations were self-generated,” Dr. Harvey told me, “you were better able to remember them.”

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. 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. When any part of this elaborate system is compromised, the memory may not be formed.

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.

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?