So, I have told you how this illness crept upon me, at first almost invisibly and then faster until it was aggressive and I was in extremis with muscle tremors and spasms. My left side was uncontrollable, and I has lost too much weight.
I was very scared. In the beginning, when I had to write with my right hand far more often than with my left, I did not know who to tell. My GP said it was in my head as I was still running and winning. I began to believe him. I thought I was so screwed up that my hand had become the scapegoat for ‘what’ was in my head. I actually had no idea what he meant. Was I imagining things I was not aware of? Attention seeking? No, I hated the attention my hand brought me. I much preferred the hugs after a race or a run, the discussion of the wind, when someone was spotted coming up from behind on my right. Who actually was the fastest? Surely it was the number of wins, rather than a single triumph.
The summer that it first began to affect my left foot, I spent some weeks with my cousins ‘up north’ near Sunderland. Their cousin on the other side of their family was the county champion. There was much talk of a race between us by my cousins and their friends. I wasn’t that interested really. I ran for pleasure. My Uncle had given me a hard time over my symptoms. Finally, the day came when we agreed to race. There was a straight alley behind the gardens where my cousins lived. We lined up. The champion, her brother, his friend, my cousins, and me. Someone started us and I ran. The sun was warm on my face and arms, my ponytail flew around behind me. It felt good. I slowed down after what seemed to be 200 yards and looked back. The champion was a good three lengths behind me and the others had either dropped out or were straggling. I stopped and turned to greet the champ with a hug. We all congratulated each other and sat in the sun. When I went into the house, my Uncle (married to my blood Auntie), said ‘I do don’t know why you walk like you do when you can run like that’ with an unkind tone.
Comments like this, and the doctor’s verdict, caused me to withdraw into myself. I became very quiet. My parents were very worried. My mother at times seemed more worried about the effect of worry on herself, and verbalised this, causing me to emotionally detach from her. She continued in this manner until long after my surgeries and my detachment from her became a void. My mother was also a very controlling, angry woman, and became a controlling grandmother. This really made me sad, as my daughter began to dislike her company by the age of four.
The more ill I became, the more passive and confused I was. I knew this was beyond my control and yet it took doctors two years to find a diagnosis. Only four cases of hemispherical Dystonia had been known in the UK. I was sent from hospital to hospital, as they tried to treat me with drug combinations. Then the idea of surgery was discussed and I was taken to what is now the Royal London Hospital, in Whitechapel for an out-patient appointment but was immediately admitted and book for my first surgery the following morning. I accepted all this, I had no fight in me, no questions, nothing to say at all. I would die without urgent surgery, and would possibly die during one of them. I wasn’t scared, I was calm, unalarmed, not wishing things were different. With hindsight, I know that if my Dad had been able to stay that night, it would have meant everything to me to hold his hand, smell his skin and be strengthened by his voice.