I drew a circle in my mind's eye and filled it with numbers as one might imagine a pond full of fish. The numbers all behaved very prettily and the circle slowly revolved. It had a reality that I can scarcely describe. It was cool, transparent, of ambiguous dimension, and flooded with light that sang to me. The numbers weren't literally numbers, the circle was not a visual phenomenon. It was an entity around myself far more interesting than reality. When I inhabited my imaginative circle it was like an adventure playground with slides of numbers and merry-go-rounds of yet more numbers. It was as if there was nothing in the world but numbers. And yet there was the noise. The noise that seemed more like light than noise. Sometimes I felt there was a relationship between the two, as if a particular sort of triangular pyramid turned at a particular speed and viewed from particular perspectives yielded something more like a piano. I couldn't discern the noise as music and I couldn't discern any known instruments but I liked the noise when I felt in control of it. It was something I could learn to control. It was something that made my hours of solitariness joyous.

It all got out of hand though when I had a nasty thought. I might never learn to talk. I have explained about this moment elsewhere (FTW 1). It was the moment when I feel as if I grew up and stopped believing in fairness. It jolted my tiny toddler-like sensibilities. You know that feeling of self that makes one not feel small but huge? The everyday feeling of self, the secular self. It is hard recalling this moment and realising what a tiny tot I was. I don't feel as if I was as small as the teeny weeny 2 year olds of my acquaintance. I remember with such clarity. I might never learn to talk. I had to grasp this reality all by myself and deal with it. Noone knew I was thinking it. This is the nature of my disability. This is what is meant by a locked-in syndrome. I cannot even yell my hurts out. Yet if you flick over to PHOTOS you will see a child leading an active life, a very ordinary-looking child in a wheelchair.

My disability is not ordinary at all but apparently unique. It is described as a kind of locked-in condition characterised by a profound apraxia of all muscles, choreic movements and hypotonia, an unknown neurodevelopmental disorder of unknown aetiology. I also have a VSD (hole in the heart) and almost daily myoclonic epileptic fits. My disability dominates my life and determines what I can achieve - but my self feels not stolid and helpless but dynamic vigorous mighty. My disability frustrates me a good deal less than the authorities whose responsibility it is to enact the law and ensure that I receive help to reach my potential. I have been paid a very paltry sum by way of compensation for 4 years of injustice. It does not relieve my fear of my own vulnerability. I am particularly vulnerable because of my daft idiosyncratic way of spelling out what I am thinking. If you wish to know more about how I communicate please click here for "How I Communicate" document.