Brain on Fire: My Month of Madness

The type and severity of a seizure depend on where the neural dysfunction is focused in the brain: if it is in the visual cortex, the person experiences optical distortions, such as visual hallucinations; if it is in the motor areas of the frontal cortex, the person exhibits strange, zombie-like movements; and so forth.

Along with the violent tonic-clonic seizure, it turned out I had also been experiencing complex partial seizures because of overstimulation in my temporal lobes, generally considered to be the most “ticklish” part of the brain.⁵ The temporal lobe houses the ancient structures of the hippocampus and the amygdala, the parts of the brain responsible for emotion and memory. The symptoms from this type of seizure can range from a “Christmas morning” feeling of euphoria to sexual arousal to religious experiences.^6,7 Often people report feeling deja vu and its opposite, something called jamais vu, when everything seems unfamiliar, such as my feeling of alienation in the office bathroom; seeing halos of light or viewing the world as if it is bizarrely out of proportion (known as the Alice in Wonderland effect), which is what was happening while I was on my way to interview John Walsh; and experiencing photophobia, an extreme sensitivity to light, like my visions in Times Square. These are all common symptoms or precedents of temporal lobe seizures.

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.⁸

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.

CHAPTER 9 A TOUCH OF MADNESS

When I gained consciousness the first thing I saw was a homeless man vomiting just a few feet away in a brightly lit hospital room. In one corner, another man, bloodied, beaten, and handcuffed to the bed, was flanked by two police officers.

Am I dead? Anger at my surroundings welled up inside me. How dare they put me here. I was too incensed to be terrified, and so I lashed out. I hadn’t felt like myself for weeks, but the real damage to my personality was only now bubbling to the surface. Looking back at this time, I see that I’d begun to surrender to the disease, allowing all the aspects of my personality that I value—patience, kindness, and courteousness—to evaporate. I was a slave to the machinations of my aberrant brain. 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 am not dead yet. I am dying because of him, because of that lab technician. I convinced myself that the tech who may have flirted with me when I had my MRI was clearly behind all this.

“Get me out of this room NOW,” I commanded. Stephen held my hand, looking frightened by the imperiousness in my voice. “I will NOT stay in this room.”

I will not die here. I will not die with these freaks.

A doctor approached my bedside. “Yes, we will move you right away.” I was triumphant, delighted by my newfound power. People listen when I speak. Instead of worrying that my life was out of control, I began to focus on anything that made me feel strong. A nurse and a male assistant wheeled my bed out of the room and into a nearby private one. As the bed moved, I clutched Stephen’s hand. I felt so sorry for him. He didn’t know that I was dying.

“I don’t want you to get upset,” I said softly. “But I’m dying of melanoma.”

Stephen looked spent. “Stop it, Susannah. Don’t say that. You don’t know what’s wrong.” I noticed tears welling up in his eyes. He can’t handle it. Suddenly the outrage returned.

“I do know what’s wrong!” I yelled. “I’m going to sue him! I’m going to take him for all he’s worth. He thinks he can hit on me and just let me die? He can’t just do that. No, I’m going to destroy him in court!”

Stephen withdrew his hand swiftly, as if he’d been burned. “Susannah, please stay calm. I don’t know what you’re talking about.”

“The MRI guy! He hit on me! He didn’t catch the melanoma. I’m suing!”

The young resident interrupted me mid-rant. “This is something you might want to look into when you get home. If you need a good dermatologist, I would be happy to recommend one. Unfortunately, there’s nothing more we can do here.” The hospital had already conducted a CT scan, a basic neurological exam, and a blood test. “We have to discharge you and advise that you see a neurologist first thing tomorrow.”

“Discharged?” Stephen interjected. “You’re letting her go? But you don’t know what’s wrong, and it could happen again. How can you just let her go?”

“I’m sorry, but seizures are fairly common. Sometimes they just happen and never happen again. But this is an emergency room, and we can’t just keep her to see. I’m sorry. My advice is to see a neurologist first thing tomorrow morning.”

“I’m still suing that guy!”

The doctor nodded patiently and departed to address the gunshot wounds and drug overdoses that awaited him.

“I have to call your mom,” Stephen said.

“You don’t have to do that,” I insisted, my voice mellowing as I returned, almost instantly, to my old self. Manic episodes can fade away as quickly as they arise. “I don’t want her to worry.” Mom was a worrier by nature, and I had tried to spare her the full story of what was happening to me so far.

“I have to,” he insisted and coaxed her home number out of me. He stepped into the hallway and waited two interminably long rings before Allen, my stepfather, picked up the phone.

“Hello,” he said groggily in his thick Bronx accent.

“Allen, it’s Stephen. I’m at the hospital. Susannah had a seizure, but she’s doing fine.”

In the background, my mom shouted, “Allen, what is it?”

“She’s going to be okay. They’re discharging her,” Stephen continued.

Despite my mom’s rising panic, Allen maintained his composure, telling Stephen to go back home and sleep. They would come in the morning. When he hung up the phone, my mom and Allen looked at each other. It was Friday the Thirteenth.

My mom felt the foreboding, and she began to cry uncontrollably, certain that something was seriously wrong. It was the first and last time she would allow herself to completely succumb to her emotions in the frightening months that followed.

First thing the next morning, while Allen scouted the street for parking, my mom arrived at my apartment door looking sharp, as always. Her frenetic energy, however, was palpable. She was terrified of even hearing about cancer on the radio, and now she had to cope with her own daughter’s mysterious seizure. I watched from the bed as she wrung her beautifully shaped hands, the feature I most adored about her, lobbing question after question at Stephen about the night in the hospital.

“Did they give any explanation? What kind of doctor saw her? Did they do an MRI?”

Allen came around behind her and massaged her earlobe, a habit of his to calm people he loves. She unwound the instant he touched her. Allen is her third husband, after my dad: her first husband was an architect, and the marriage didn’t work for a number of reasons, in part because my mom, very much a feminist of the 1970s, didn’t want children. She wanted to focus instead on her career at Manhattan’s district attorney’s office, where she still worked. When she met my father, she left her first husband and together they had my brother, James, and me. Despite having had kids together, their relationship was ill fated from the start. Both were as hot-tempered as they were stubborn, yet they managed to make their marriage last nearly two decades before they divorced.

My mom and Allen had met thirty years ago at the district attorney’s office, long before she married my dad. Allen had won her over as a friend with his loyalty and devotion. He eventually became her key confidant in and out