Brain on Fire , an extract from the book by Susannah Cahalan

Link from The Guardian (Sun 20th Jan, 2013):

Brain on Fire: ‘Blood and foam began to spurt out of my mouth’

She was 24 when she began to suffer terrifying seizures. In this extract from her new book, she describes the first such incident

Susannah Cahalan, photographed in Union City, New Jersey. Photograph: Mike McGregor for the Observer
Susannah Cahalan, photographed in Union City, New Jersey. Photograph: Mike McGregor for the Observer

After a series of uncharacteristic outbursts, episodes of pins and needles, nausea and migraines and incidents of irrational behaviour, Susannah suffers a seizure while sleeping…

Brain On Fire - BookAs Stephen later described the nightmarish scene, I had woken him up with a strange series of low moans, resonating among the sounds from the TV. At first, he thought I was grinding my teeth, but when the grinding noises became a high-pitched squeak, like sandpaper rubbed against metal, and then turned into deep, Sling Blade–like grunts, he knew something was wrong. He thought maybe I was having trouble sleeping, but when he turned over to face me, I was sitting upright, my eyes wide open, dilated pupils but unseeing.

“Hey, what’s wrong?”

No response.

When he suggested I try to relax, I turned to face him, staring past him like I was possessed. My arms suddenly whipped straight out in front of me, like a mummy, as my eyes rolled back and my body stiffened. I was gasping for air. My body continued to stiffen as I inhaled repeatedly, with no exhale. Blood and foam began to spurt out of my mouth through clenched teeth. Terrified, Stephen stifled a panicked cry and for a second he stared, frozen, at my shaking body.

Finally, he jumped into action; though he’d never seen a seizure before, he knew what to do. He laid me down, moving my head to the side so that I wouldn’t choke, and raced for his phone to dial 911.

I would never regain any memories of this seizure or the ones to come. This moment, my first serious blackout, marked the line between sanity and insanity. Though I would have moments of lucidity over the coming weeks, I would never again be the same person. This was the start of the dark period of my illness, as I began an existence in purgatory between the real world and a cloudy, fictitious realm made up of hallucinations and paranoia.

From this point on, I’d increasingly be forced to rely on outside sources to piece together this “lost time”.

As I later learned, this seizure was merely the most dramatic and recognisable of a series of seizures I’d been experiencing for days already. Everything that had been happening to me in recent weeks was part of a larger, fiercer battle taking place at the most basic level inside my brain.

The healthy brain is a symphony of 100 billion neurons, the actions of each individual brain cell harmonising 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, tumour, lack of sleep, or even alcohol withdrawal, the cacophonous result can be a seizure.

For some people, the result is a “tonic-clonic” seizure like the one Stephen witnessed, characterised by loss of consciousness or muscle rigidity and a strange, often synchronised dance of involuntary movements – my terrifying zombie moves. Others may have more subtle seizures, which are characterised by staring episodes, foggy consciousness or repetitive mouth or body movements. The long-term ramifications of untreated seizures can include cognitive defects and even death.

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 over-stimulation in my temporal lobes, generally considered to be the most “ticklish” part of the brain. 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. Often, people report feeling deja vu and its opposite, something called jamais vu, when everything seems unfamiliar, such as a feeling of alienation I’d 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 I experienced prior to a disastrous interview with America’s Most Wanted host John Walsh; and experiencing photophobia, an extreme sensitivity to light, such as visions I had 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% – 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.

When I regained 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 convinced myself that a technician who may have flirted with me when I had my MRI scan was clearly behind all this. I am dying because of him, because of that lab technician.

“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 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 OK. 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 13th. 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 succumb completely to her emotions in the frightening months that followed.

EXTRACT 2: Susannah Cahalan’s recollections of her illness were far from reliable, so in order to write Brain on Fire she had to draw on the memories of friends and colleagues, and other material, such as hospital CCTV footage and a journal she kept during her hospital stay. Watching and reading back this material was an unsettling experience for her.

I insert a silver DVD marked “Cahalan, Susannah” into my DVD player. The video begins. I see myself at the centre 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 realisation 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. 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.

During my third hospital stay my true moment of awakening occurred; I began keeping a diary, started reading again, and first expressed the desire to understand what had happened to me. Perhaps because the diary provides physical evidence of my budding self (I can literally read the thoughts of that wounded Susannah), I can in essence begin to remember what it was like to be her, unlike the earlier Susannah from my paranoid diary entries before the hospital, who was more like a figment of a shadowy memory, so distant that she might have been a character in a horror movie. Yet the person I read about in my recovery diary is childlike and prosaic, unlike that umbral pre-hospital self who could, even at her most obscured, be eerily illuminating. Yet, there are surprising similarities between this diary and the journals I kept during junior high school. In each, there’s a stunning lack of insight and curiosity about myself. In place of deep thought, there are dozens of passages dedicated to my body (weight gain in the recovery piece and lack of breasts in the junior high journal) and silly, petty issues of the day (hating hospital food versus fighting with frenemies). I sympathise with this vulnerable, budding Susannah, as I do that pre-teen version of myself, but she is still not entirely me, as I am now.

Extracted from Brain on Fire: My Month of Madness by Susannah Cahalan, published by Particular Books, £16.99.

By Sam Downie

Adult with Seizures, Autism and a Lung/Breathing Condition caused by post-emergency Appendectomy surgery. BAFTA & British Council supported Autistic Neurodivergent Filmmaker, Voice Over, Actor, Presenter, Podcaster and Content Creator. Ambassador for Epilepsy Awareness Day at Disneyland Resort. Volunteer for Bristol Epilepsy Support Group. Visit the website :