Friedreich's Ataxia

FRIEDREICH’S ATAXIA
The disease that I have is called Friedreich’s Ataxia, a progressive condition that affects the nervous system. For much of my younger life I allowed the fact that I was in Ziggy to affect me as little as possible; I lived alone, I went to London for a few years, I took a BA at Polytechnic, I went to Transylvania… I did all the usual crazy things people do! Several things happened around the same time at the beginning of the 90’s… I moved in with Andy and had Jack.

SENSELESS?
It was when Jack was a baby that I first began to have problems with my eyesight, which had never really given me trouble before. I think I realised right away that the disease had chosen to attack my senses, for my hearing also has become deficient in recent years. I had to give up using a word processor to write, when it became impossible for me to read what was written on the screen. My imagination, however, is still active and raring to go!! But seriously, the loss of my eyesight has been the most difficult thing for me to come to terms with, because I was an artist as well as a writer, and it meant the end of my painting and sketching. Thankfully, this interest in art has been passed on to Jack, so it’s not dead! But still, the deterioration of two of my senses presented problems not only with writing but also reading…

UNIVERSITY
Recently I took an MA in English Studies at Manchester University, which I enjoyed! I needed to prove to myself and to others that I was still capable of achieving such a thing. It wasn’t just a question of a piece of paper saying I had passed, but it was a continual battle against people’s embarrassment and ignorance. Still, my MA was a success, and so my life continues into the 21st century, with new targets to be achieved and improvements to be made always.