I was sitting on the living room floor when it happened. I was four years old and sat with my brother Lee while my father was making dinner in the kitchen. It was not exceptional at that age for me to feel moments of complete disconnection, periods of total self-absorption—studying closely the lines on the palms of my hands or watching my shifting shadow as I leaned myself back and forth in slow and rhythmic movements. But this was something else, an experience unlike any other, as though the room around me was pulling away from me on all sides and the light inside it leaking out and the flow of time itself coagulated and stretched out into a single lingering moment. I did not and could not have known it then, but I was having a massive epileptic seizure.
Epilepsy is one of the most common conditions affecting the brain—around 300,000 people in the U.K. have some form of it. Seizures are the result of brief electrical disturbances in the brain. Little is presently known about why they happen or how they start and stop. No one apparent cause has been found, but doctors think that epilepsy may be due to a problem with the links between nerve cells or the balance of chemicals in the brain.
In the days before the seizure my father had noticed my eyes flicker and arms tense as I lay on the settee in the living room watching television. He was concerned and called the doctor to come and examine me. The weather was hot and humid and the doctor suggested that I might only have had a “turn.” He recommended that my father remain vigilant and immediately report any further such episodes.
I was extremely fortunate that my brother was with me at the time of the second seizure. I had gone into convulsions and lost consciousness. My father, hearing my brother crying, rushed in to find the cause of the commotion. Acting on instinct, he carefully scooped me up into his arms and ran out of the house to a row of taxicabs parked close by. Climbing inside the first, he begged the driver to take him to the nearest hospital—St. George’s—as quickly as possible. As the taxi raced through the streets, there was nothing my father could do but hold me close to him and pray.
Sweating profusely, my father ran from the taxi direct to the children’s ward. I had not come around and the seizure activity continued, a potentially life-threatening condition known as “status epilepticus.” A nurse at reception collected me from my father’s arms and called for doctors, who first gave me a Valium injection to help stabilize my condition. I was not breathing and had started to turn blue, so the doctors performed cardiopulmonary resuscitation (CPR) to revive me. It was about an hour after the seizure had begun that my condition started finally to return to normal. Exhausted by the ordeal, my father burst into tears of relief at the news. He had by his prompt action helped save my life.
I was diagnosed with temporal lobe epilepsy. The temporal lobes are located on the side of the head above the ears. They are deeply involved with sensory input, memory, hearing and perception, and seizures occurring in this area of the brain can impair memory function and affect personality.
The prevalence of epilepsy among those on the autistic spectrum is much higher than in the normal population. About a third of children in Britain with an autistic spectrum disorder develop temporal lobe epilepsy by adolescence. For this reason it is thought that the two conditions may have a common source in the brain’s structure or in the genetics that underlie it.
As part of the diagnosis, I was given a test called an electroencephalogram (EEG). During an EEG, electrodes are placed around the scalp to measure the brain’s electrical activity and to check for any abnormalities in the brain waves. I recall the technician standing over me and sticking the electrodes—small and circular metal caps—onto different parts of my head with paste to keep them in place. I winced and grimaced as each one was applied because I didn’t like the sensation of someone touching my head.
I also underwent a magnetic resonance imaging (MRI) brain scan. MRI uses a powerful large magnet, microwave radiation and computers to generate detailed images of the inside of the body. I was sedated ahead of the scan, probably because the technician was concerned that I would not be able to cope with the noise of the machine and the possible feeling of claustrophobia while inside the scanner. I remember being laid down on a soft, bright white couch which was then pushed into a narrow tunnel for the scan, which lasted around thirty minutes. I must have fallen asleep inside because I remember being woken by my father after the couch was pulled out from the tunnel. This is in spite of the fact that the scanner would have been very noisy while the pictures were being taken.
I stayed in hospital for several days while the different tests were being carried out. My parents took turns to remain with me day and night. They were frightened that I might wake up and panic if I did not see a familiar face. The ward where I stayed had a shiny floor with lots of tiny scratches on it, and the texture of the sheets on my bed felt different to those at home—pricklier and less soft. My parents gave me orange juice to drink and coloring books and crayons to occupy myself with, but a lot of the time I just spent sleeping because I felt so tired.
The doctors told my parents that my prognosis was good—about half of all children diagnosed with temporal lobe epilepsy outgrow the condition. I was prescribed antiseizure medication and allowed home.
My being diagnosed with epilepsy affected both my parents very deeply, my father in particular. His father—my grandfather—had suffered from epileptic seizures over many years in adulthood and died prematurely several years before I was born.
His name was William John Edward and he was born in East London in the early 1900s. He had worked as a shoe repairer and fought during the Second World War, evacuated from Dunkirk before being stationed at a military base in northern Scotland, manning an anti-aircraft gun. He was married and had four children; my father was the youngest. The seizures began after the war and were particularly violent—my grandmother quickly became familiar with the sound of crashing plates and cups being knocked from the kitchen table onto the floor.
At that time the resources available for helping those living with epilepsy were limited. Doctors suggested that my grandfather’s illness had been brought on by shell shock suffered during the war. They advised my grandmother to divorce her husband and to move on. After all, she had a young family and her whole life ahead of her. It must have been the most difficult decision she ever had to make, but she took the doctor’s advice and subsequently remarried. My grandfather was moved to a long-stay institution for ex-soldiers with mental problems.
The breakup of my grandparents’ relationship had disastrous consequences for the family. My grandmother started a new family, but her new husband struggled to find work and gambled what little he earned so that, without a stable income, they soon found themselves with growing rent arrears. One day the family returned home to find their furniture piled up on the lawn and the doors padlocked. They had been evicted by the council for nonpayment of rent—they were homeless.
A friend of the family initially took in the children, including my father, who had the role of eldest brother to his stepsiblings, before they were moved with my grandmother to a hostel for the homeless. My father was given a Lego set as a going-away present by the family friend who had helped to look after him. The hostel was made up of small huts with shared toilets, bathroom and kitchen for the residents. The corridors connecting the rooms were narrow and the floor was covered in red concrete. My father could hear the members of staff walking along the corridor from the noise of their footsteps. He nicknamed one “Jackboots.”
The family’s accommodation consisted of two cramped, unfurnished rooms. No television or radios were allowed. In one room—the children’s—there was space for three small beds. My grandmother’s room had a bed, table and chair. No men were allowed to stay, so her husband was forced to rent rooms above a shop. They would be separated for the duration of the family’s stay at the hostel.
Life at the hostel was grim—apart from the bare accommodation, there was no privacy; doors were to remain unlocked at all times, and the staff were strict and ran the building in a military fashion. The family hated their time there, which lasted for a year and a half. Their stay was only brightened a little by the friendship my grandmother was able to strike up with the hostel manager, a Mrs. Jones. Eventually, the family was moved to a new house.
My father met his father for the first time when he was eleven. By this time my grandfather’s seizures were less frequent and he was allowed out on day release to work at his shoe repair shop. In the evenings he returned to the institution. My father had been very young when my grandfather’s illness began, so he had no memories of him and did not even know what he looked like. They met at the home of the family friend who had helped care for him and his stepsiblings several years earlier. My father remembers shaking hands with a gray-haired man with ill-fitting clothes who was then introduced to him as his father. Over time, they grew close.
As my grandfather got older, his health quickly deteriorated. My father would visit him at the hospital as often as he could. He was twenty-one when my grandfather died, of organ failure following a stroke and seizure. From all accounts he was a kind and gentle man. I wish I could have had the opportunity to meet him.
I am extremely fortunate to live in an age of many important medical advances, so that my own experience of epilepsy was nothing like that of my grandfather’s. Following the seizures and my diagnosis, I think what must have frightened my parents most of all was the possibility that I would not be able to lead the “normal” life they really wanted for me. Like many parents, they equated normality with being happy and productive.
The seizures did not recur—as is the case in around 80 percent of those living with epilepsy, my medication was effective, which meant I lived seizure-free. I think this was the biggest factor in my mother’s ability to cope with my illness. She was very sensitive to the fact that somehow I had always been different, vulnerable, in need of extra care and support and love. Sometimes she got upset at the thought that I could have another seizure at any time. Then she would go into another room and cry softly. I remember my father telling me not to go into the room when my mother was upset.
I found it very hard to pick up on my mother’s feelings. It didn’t help that I remained in my own world, engrossed in the smallest things but unable to understand the various emotions or tensions at home. My parents sometimes fought, as I think most parents do, over their children and the best way to deal with different situations. When they argued, their voices turned a dark blue color in my mind and I would crouch on the floor and press my forehead into the carpet with my hands over my ears until the noise abated.
It was my father who helped me to take my tablets every day, with a glass of milk or water around mealtimes. The medication—carbamazepine—meant I had to go with him to the hospital every month for blood tests, because of the effect the tablets can sometimes have on liver function. My father is a stickler for punctuality and we were always at the hospital waiting area at least an hour before the appointment was due. He always bought me a plastic cup of orange juice and some cookies while we waited. The chairs that we sat on were plastic and uncomfortable, but I remember not wanting to stand up on my own, so I waited for my father to stand before I did. There were lots of chairs and I passed the time by counting them over and over.
When the nurse called my name, my father walked with me to a small curtained-off area where I sat down and the nurse rolled up one of my sleeves and dabbed the center of my arm. I had many blood tests so that with time I knew what to expect. The nurse encouraged patients to look away while the needle was being inserted, but I kept my head still, my gaze fixed, watching the transparent tube above the needle fill with dark red blood. Once she was finished, the nurse dabbed the arm clean and stuck cotton in place with a Band-Aid that had a smiley face on it.
One of the commonest side effects of the medication is hypersensitivity to sunlight and I spent the summer months indoors while my brother played outside in the garden and the park. I didn’t mind because, even today, sunlight often makes me feel itchy and uncomfortable and I rarely venture outside for long periods in sunny weather. My parents wanted to supervise me even more closely following the seizures so I spent a lot of time in the living room, where my mother could keep a close eye on me, watching television or playing with coins or beads I was given to count with.
Feelings of dizziness or grogginess were also common side effects I experienced. Whenever I started to feel dizzy I would immediately sit down, cross my legs and wait for the sensation to pass. This sometimes caused embarrassment for my parents if they were walking with me in the street and I suddenly stopped and sat down in the middle of the pavement. Fortunately the dizzy spells did not last long, just a matter of seconds. The loss of control, as well as the unpredictability of the spells, frightened me and I was often irritable and tearful following one.
There exists a complex relationship between sleep and epilepsy, with a higher incidence of sleep disorders found among those with epilepsy. Some scientists believe that sleep-related events such as sleep terrors and sleepwalking may actually represent nocturnal seizure activity in the brain. I occasionally sleepwalked—in some periods frequently, in others less so—from around the age of six through to the start of my adolescence. Sleepwalking (somnambulism) occurs during the first three hours of sleep, when the sleeper’s brain waves have increased in size and the sleep is dreamless and deep. Typically, the sleepwalker does not respond if talked to and does not remember the episode upon waking. In my case, I would climb out of bed and walk repetitively in the same path around my room. Sometimes I would bang at the walls or door in my room, waking my parents, who would gently guide me back to bed. Though it’s not in fact harmful to wake someone who is sleepwalking, it can be confusing and upsetting for the sleepwalker.
My parents took several precautions to ensure my safety during the night. They cleared the floor of my room of any toys each evening before bed and left a light on in the hallway when it came to bedtime. They also fitted a gate at the top of the stairs after one occasion when I apparently sleepwalked down the stairs and to the back of the house and was found pulling at the kitchen door leading out to the garden.
Perhaps not surprisingly, it frequently felt during the day like all my energy had been emptied away and all I wanted to do was sleep. It was normal for me to put my head down on my school desk in class and fall asleep. The teachers, fully informed by my parents, were always sympathetic and tolerant. It was often disorientating to wake up after a period of ten or twenty or thirty minutes and find the class empty and the children running outside in the playground, but my teacher was always there to reassure me.
The cumulative impact of the various side effects of my medication on my first year at school was considerable. I found it hard to concentrate in class, or to work at a consistent pace. I was the last child in the class to master my ABCs. My teacher, Mrs. Lemon, gave me extra encouragement with colored stickers if I made fewer and fewer mistakes as I wrote the alphabet down. I never felt self-conscious or embarrassed at lagging behind the other children; they just weren’t a part of my world.
Twice a year I visited the Westminster Children’s Hospital in London with my father for a brain scan to monitor my condition. We would go by taxi, arrive early as usual, and then wait for the consultant to call us. I must have spent many, many hours over those years sitting in hospital waiting areas.
After three years the decision was made to gradually phase out my antiseizure medication. My mother panicked at the thought that the epilepsy might return, though fortunately I remained and remain today seizure-free. The previous side effects of the medication disappeared and my performance at school improved thereafter.
• • •
It’s not clear what lasting effect—if any—the epilepsy has had on my brain and how it works. My childhood seizures originated in the left temporal lobe, and some researchers suggest that one explanation for savant abilities is left-brain injury leading to right-brain compensation. This is because the skills most commonly seen in savants, including numbers and calculation, are associated with the right hemisphere.
However, it is not easy to determine whether the epilepsy is a cause or a symptom of the left-brain injury and it is possible that my seizures in childhood came about as a consequence of preexisting damage in the brain, probably there from birth.
For this reason, scientists have been interested in studying my perception abilities to see in what way they differ from those of other people. A study was carried out at the Autism Research Centre in Cambridge in the autumn of 2004. The center’s director is Professor Simon Baron-Cohen, a professor of developmental psychopathology and a leading researcher into autistic spectrum disorders.
The study tested the “weak central coherence” theory, which says that individuals on the autistic spectrum are more likely to process details at the expense of global information (“the bigger picture”), whereas most people integrate information into context and gist—often missing out on smaller details. For example, studies have shown that autistic children are better at recognizing familiar faces in photographs when given just part of the face than are nonautistic controls.
In the Navon task, participants are asked to identify a selected target occurring at either a local or global level. In my test at the center, the scientists asked me to press a button by my left hand if I saw a letter A and to press a button in my right hand if I didn’t. Images were flashed up onto a screen in front of me and responses were automatic. On several occasions I pressed “no,” only for my brain to catch up seconds later with the perception that the overall configuration of the letters created an A shape. Scientists call this phenomenon “interference” and it is commonly employed in optical illusions. For most people, the interference is caused by the global shape—for example, when presented with a letter H composed of lots of small As, most people will not immediately see the As because of the interference effect of seeing the H shape. In my case, like those of most people on the autistic spectrum, the interference is reversed and I struggle to see the overall letter shape because my brain focuses automatically on the individual details.
In the above illustrations the image on the left shows the letter A composed of smaller Hs. The right image shows the letter H composed of smaller As.
• • •
In Australia, Professor Allan Snyder—director of the Centre for the Mind at the University of Sydney—has attracted considerable interest for his claims that he can reproduce savant-like abilities in subjects using a technique called transcranial magnetic stimulation (TMS).
TMS has been used as a medical tool in brain surgery, stimulating or suppressing particular areas of the brain to allow doctors to monitor the effects of surgery in real time. It is noninvasive and seemingly free of serious side effects.
Professor Snyder believes that autistic thought is not wholly different from ordinary thought, but an extreme form of it. By temporarily inhibiting some brain activity—the ability to think contextually and conceptually, for example—TMS, Professor Snyder argues, can be used to induce heightened access to parts of the brain responsible for collecting raw, unfiltered information. By doing this, he hopes to enhance the brain by shutting off certain parts of it, changing the way the subject perceives different things.
The professor uses a cap attached by electrodes to a TMS machine. A giant black key is applied to the temporal lobes, which sends varying pulses of magnetic energy. Some of the subjects who have undergone the procedure claim temporarily enhanced drawing and proofreading skills; drawings of animals became more lifelike and detailed, and reading became more precise.
Most people read by recognizing familiar groupings of words. For this reason, many miss small errors of spelling or word repetition. Take the following example:
A bird in the hand
is worth two in the
the bush
Read quickly, most people don’t spot the second, superfluous “the” in the sentence above.
A side benefit of processing information in parts instead of holistically is that having a very good eye for detail, I proofread very well. On Sunday mornings, reading pages of the day’s newspaper at the table, I would annoy my parents no end by pointing out every grammatical and spelling error I found. “Why can’t you just read the paper like everyone else?” my exasperated mother would ask, having listened to me point out the twelfth error in the paper.
Professor Snyder argues that savant abilities may be in everyone, only most are unable to unlock them. He believes my epileptic seizures may have played a role, similar to that of the magnetic energy pulses of his TMS machine, in affecting certain areas of my brain, paving the way for my abilities with numbers and different perceptual processing.
There are examples of those who have acquired savant skills following illness or injury to the brain. One is Orlando Serrell, who was hit on the head by a baseball at the age of ten. Several months later he started recalling huge amounts of information, including license-plate numbers, song lyrics and weather reports.
Similar transformations have been reported in cases of patients suffering from frontotemporal dementia (FTD), a degenerative brain disease affecting the frontal and temporal lobes. As the disease progresses, personality, behavior and memory are affected. FTD mostly occurs in adults in their forties, fifties and sixties.
Bruce Miller, a neurologist at the University of California in San Francisco, says some of his patients with FTD spontaneously develop interest and skill in art and music. Studies using brain imaging show that for those patients who develop skills, blood flow or metabolic activity is much reduced to the left temporal lobe. Meanwhile, the right hemisphere of the brain, where visual and spatial processing are located, is much better preserved.
It seems that my childhood seizures may well have played an important role in making me the person I am today. Many others have felt similarly about their experience of epilepsy, among them Fyodor Dostoyevsky. The nineteenth-century Russian writer—author of such literary classics as Crime and Punishment and The Brothers Karamazov—had a rare form of temporal lobe epilepsy called “Ecstatic Epilepsy.” Dostoyevsky’s seizures mostly occurred at night and were generalized, affecting his entire body. His experience of epilepsy led him to create characters with epilepsy in four of his novels: Kirilov in The Possessed, Smerdyakov in The Brothers Karamazov, Nellie in The Insulted and Injured and Prince Myshkin in The Idiot.
Dostoyevsky described his experience of epilepsy in this way:
For several instants I experience a happiness that is impossible in an ordinary state, and of which other people have no conception. I feel full harmony in myself and in the whole world, and the feeling is so strong and sweet that for a few seconds of such bliss one could give up ten years of life, perhaps all of life.
I felt that heaven descended to earth and swallowed me. I really attained God and was imbued with Him. All of you healthy people don’t even suspect what happiness is, that happiness that we epileptics experience for a second before an attack.
The writer and mathematician Lewis Carroll is also thought to have had temporal lobe seizures, which may have inspired the writing of his most famous work, Alice’s Adventures in Wonderland. The following passage describes an experience of falling involuntarily very similar to that of an epileptic seizure:
Alice had not a moment to think about stopping herself before she found herself falling down a very deep well . . . “Well!” thought Alice to herself, “after such a fall as this, I shall think nothing of tumbling down stairs!” . . . down, down, down. Would the fall never come to an end?
Some researchers even believe there may be a link between epilepsy and creativity. Writer Eve LaPlante makes this case in her book Seized: Temporal Lobe Epilepsy as a Medical, Historical and Artistic Phenomenon. In it, she gives the famous case of the painter Vincent van Gogh, who suffered from severe seizures that left him depressed, confused and agitated. In spite of his illness, van Gogh produced hundreds of watercolors, oil paintings and drawings.
For several months around the age of eight I wrote compulsively across long reams of computer paper, often writing for hours at a time, covering sheet after sheet of paper with tightly knit words. My parents had to purchase huge rolls of paper for me because I kept running out. My handwriting was tiny—one teacher complained that she had had to change the prescription of her glasses to read my work—as a result of my fear of running out of paper on which to write down the words.
The stories I wrote, from what I can remember of them, were descriptively dense—a whole page might be taken up in describing the various details of a single place or location, its colors, shapes and textures. There was no dialogue, no emotions. Instead I wrote of long, weaving tunnels far underneath vast, shimmering oceans, of cragged rock caves and towers climbing high into the sky.
I didn’t have to think about what I was writing; the words just seemed to flow out of my head. Even without any conscious planning, the stories were always comprehensible. When I showed one to my teacher, she liked it enough to read parts of it out loud to the rest of the class. My compulsion to write soon disappeared as suddenly as it had first visited me. However, it left me with a permanent fascination for words and language—something which has since been greatly beneficial to me.
More and more people today living with epilepsy are able to lead seizure-free lives, thanks to the ongoing advances in medicine and technology. The stigma that was once attached to those diagnosed with conditions such as epilepsy (and autism) is rapidly disappearing. In spite of this, disorders affecting the brain are still misunderstood by many people. I would tell parents with children who have been diagnosed with epilepsy to educate themselves as much as possible about the condition. Most important of all, give your children the self-belief to hold on to their dreams, because they are the things that shape each person’s future.
