Epilepsy is one of the most common conditions affecting the brain – around 300,000 people in the UK 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 single 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 straight to the children’s ward. I had not come round 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 stabilise 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 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 – on to 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 it in turns to stay 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 colouring-in 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 anti-seizure medication and allowed home.
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 on to 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 doctors’ advice and subsequently remarried. My grandfather was moved to a long-stay institution for ex-soldiers with mental problems.
The break-up of my grandparents’ relationship had disastrous consequences for the family. My grandmother started a new family but her second 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 non-payment of rent – they were homeless.
A friend of the family initially took the children in, 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 then 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 h
elped care for him and his stepsiblings several years earlier. My father remembers shaking hands with a grey-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% 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 colour 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 would buy 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 centre 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 wool in place with a plaster 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 tetchy and tearful following one.
There exists a complex relationship between sleep and epilepsy, with a higher incidence of sleep disorders found among those with the condition. 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 – 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 into 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, during the day it frequently felt 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 ABC. My teacher, Mrs Lemon, gave me extra encouragement with coloured 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 anti-seizure 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 pre-existing 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 centre’s director is Simon Baron-Cohen, a professor of developmental psycho-pathology 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 recognising familiar faces in photographs when given just part of the face than are non-autistic 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 centre, the scientists asked me to press a button by my left hand if I saw a letter ‘A’ and to press a button by 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 ‘A’s, most people will not immediately see the ‘A’s 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.
Born on a Blue Day: Inside the Extraordinary Mind of an Autistic Savant Page 4
