Review of First Edition by Josie Stephenson
"Josie Stephenson meets a remarkable young woman who copes with a complexity of disorders which makes her world totally at odds with ours"As a war time child it never occurred to me that night was the time to undress and climb upstairs to bed and to sleep.
For my generation it was the time to dress up warm, walk to the end of the garden, climb down a ladder and sit out most of the night listening to aircraft droning overhead and explosions tearing London's docklands apart.
But as I had known nothing else, I was not afraid and neither did I understand that life could or should be any different.
In much the same way I know a woman who was born deaf and went through her entire childhood believing that the world was a silent one and that everyone lip-read.
They are situations to which, I suspect, a brilliant young woman is readily able to relate.
From her earliest years Alison Hale has seen the world around her from a totally different perspective to the rest of us. Hers is a world swirling with multicoloured blurs, a deafening cacophony of overwhelming sound and an unintelligible jumble of symbols which for most of us form the written word.
But for Alison they have been as meaningless and indecipherable as language from another planet. It's only in adulthood that she has been able to painstakingly unravel them to make sense, but even today reading is a slow one-letter-at-a-time affair.
Bravery comes in many guises, but the particular brand which symbolises this young woman is rare indeed. Alison lives in constant turmoil triggered by a complexity of disorders, the best known of which is dyslexia. Yet in spite of them she has laboured away through month after month of physical pain and mental torture to produce what has to be the most graphic book about a world which is as divorced to that known by the rest of us as it is possible to be.
Not only has Alison had to battle with what has to be the worse form of dyslexia possibly ever recorded, but with the effects of it being chain-linked to Attention Deficit Disorder (ADD), and autism which manifests itself with even worse perceptual difficulties over a greater range of senses and systems than dyslexia, with imagination impairment, social communication interaction and often repetitive behaviour.
Today, at the age of 29, Alison wages a daily personal battle to impersonate normality to enable her to earn a living as a computer web designer and carve a niche for herself in our alien world.
Her book My World is not Your World is one of the most disturbing I have read, because I had no idea anyone could experience such torment, and because as a mother my heart went out not just to Alison but to her parents.
Their bewilderment, frustration, exasperation and pain sprang from the pages as graphically as Alison's fear, disorientation and sense of total isolation, rendering me impotent with a sense of defeat in the knowledge that little, if anything, can be done to help or even to attain a modicum of understanding.
"I wrote the book" she said, "because I wanted people to understand that there are other ways of perceiving the world, and in the hope that it would help people like me who have brains that don't translate information properly"
But what does that exactly mean? How DOES Alison see her world as opposed to how I see mine? Describing her first day at playschool at the age of three is harrowing: "...nobody seems to notice my terror as the noise consumes me and the multicoloured blurs rush past me screaming, shouting and sometimes knocking me. The only reassuring safe reference point in all this chaos is fast moving towards the door. Why does my mother insist on leaving me here?...."
".....we are given this large sheet of glaring white paper on which to paint. I know that to remove this painful glare all I have to do is to paint the whole sheet of paper black. For some reason nobody including my mother, ever seems enamored with my completely black paintings."
Primary school proved to be a bigger nightmare. Alison's lack of co-ordination led her to continually falling over and she wrote: ".....the only good aspect about grazing my knees is that I have to go inside to the school nurse. It is quiet and peaceful in her office. Many times I took the drastic measure of cutting my knees with my fingernails or some stones just so that I could go into the peace and quiet....." - an ominous forethought to her anguished teenage out pourings of: "My Grandfather often says 'school days are the best years of your life'. If this were true I am not interested in living, there would be no point. I have no way of knowing how to cope with this total isolation and no way of communicating my predicament. The older I become the worse my life becomes, because I cannot interface between 'my world' and 'the world'....
".... would it not be better to simply end my misery now? Surely there can be no point to my useless and hopeless life? I seem unable to make any proper contribution to society and find it hard to imagine that I ever will. Perhaps the creator of the universe had a warped sense of humour....."
Today there is a general consensus that the main characteristic of dyslexia, is an inability to recognise words and simultaneously translate them into something of meaning, resulting in reading, spelling and grammar problems.
When Alison started school the word dyslexia was seldom heard and when it was it was assumed to be a condition dreamed up by pushy middle class parents to cover their embarrassment at having produced a dim witted child.
The fact is that a very high proportion of children suffering dyslexia also have a high IQ so enabling them to cover up their feelings of non self-worth and very often the condition itself for years.
Only an highly intelligent child for example would wonder, as in Alison's case, whether it's the black symbols on a page which must be read or the white areas in between them.
She recalled that at primary school age reading was a total mystery. "Should I be looking at the black bits that disappear and then reappear or the white bits that also disappear and then reappear?" she asks in her book.
"I have asked my teachers 'what should I read?' But I never manage to find a satisfactory answer. They never seem to understand my enquiry."
Personal relationships were excruciating. It was also impossible for Alison as a child to be able to connect with family members - her only stable reference points - unless she was able to associate them with a characteristic or wearable item like, for example, a watch.
This was because she had and still has difficulty distinguishing people from the constant blur their movement creates. Facing me she confessed that she was able to see my features even although they tended to merge together and then apart. The remainder of my body filtered away into a blur of green (my overcoat).
As a small girl she was unable to recognise her mother other than by her hair style. When her mother's hair was cut Alison's isolation was complete. She thought that her mother had disappeared and that she had been abandoned.
"My father planted a kiss on the cheek of the lady masquerading as my mother," she wrote. "My father must know about the deception, he must have trained this lady to act like my mother so that the rest of us would not notice. This is terrifying. I think it would be unwise to let my father know that I realise what is going on, because he may replace me in the same way that my mother has been replaced!
"Hopefully my real mother can come back soon. I hope that they do not expect me to like this intruder..." - the desolation of that little girl can only be imagined.
Alison was laughed at by her contemporaries, shouted at by her teachers and academically overtaken by her younger sister to such an extent that her sense of self worth plummeted to nothing.
She covered up her isolation with an application of logic advanced way beyond her years, a mischievous kick out of getting one over on her teachers so proving to herself that they were not as clever, and outbursts of classroom disruption. In short she was a teacher's nightmare!
"I would like to see teachers trained to spot dyslexia as early as possible so that the child is passed on to experts," says Alison. "When I was at school I was considered to be stupid. I knew that I wasn't and I set out to prove it."
She left school at 16 with GCE (General Certificate of Secondary Education) passes in maths, English, European studies, music, German, physics, technical drawing and geography and an electronic apprenticeship with an international company.
She went on to pass her BTEC Higher National Certificate in Electronic Engineering and won a place at York University.
"I am now truly alone," she wrote when her parents settled her in on campus and left for home. "I find it difficult to walk along the corridor without banging into one wall and then the other. It is as if the corridor shrinks and moves...
"....the noise in the accommodation block is distracting me.....everything mingles together in my mind: sounds, smells, sights, my work. How can anyone concentrate in this chaos?.....
"The sun steams through the window, the brightness is blinding and very long spikes of sunlight come out toward me from places where the sun hits shiny surfaces....
"The carpet and duvet cover in my study room is highly patterned, this causes me to see a whirling mesmerizing mess, which hurts my eyes.....the only way I can deal with this torture is to build a wall of logic, build a mental strategy for coping with 'the world'"
Eventually Alison, on line for a first class honors degree, gave up the struggle dropped out and returned home.
And what about the future? A flicker of a smile crossed Alison's face. "I want to get a PhD but that's impossible without a degree."
What about doing an Open University course, which could be taken on in the sanctuary of her parents' home, I suggested.
Alison gave me a long contemplative look which appeared to pass around me - to a swirling mass of colour perhaps of which I was unaware? I had thought that during our time together she and I had made definite contact and that I had started to penetrate and understand her world, now I wasn't sure. I left feeling suddenly very very sad.