After the surgeries on my brain, told in my last blog, I was left with akinetic mutism. This is the inability to move or speak. It is not the same as being paralysed – it is as if all energy or life is drained from those faculties, and when they are regained, the ‘oomph’ or ‘spring’ is no longer there.
Initially, I was in a coma for some weeks. I have never established whether that was medically induced because of any swelling on my brain, or whether it was the result of the surgery itself. The first surgery was to drill through my skull in two parallel places on the top of my skull and metal plates were put in to prevent the bored sites from knitting together. I was allowed general anaesthetic for this first operation. The next, on the left hemisphere of my brain, was done with local anaesthetic only. I don’t recall much of it even though it was over five hours long. I think I have blocked the memory, memories, as the trauma and extreme fear I experienced have left me with post traumatic shock disorder. I spent the next three weeks or so, it may have been much longer, in the Intensive Care Unit. A nurse was with me at all times. if my temperature rose the room would be cooled by the same number of degrees and I had a heart monitor.
It was rather nice that staff would gather in my room as they left their shifts, chatting to me, telling me jokes, or just bringing a card or some flowers. I still had all my symptoms at this stage, as the Dystonia affected my left side and, therefore, the right hemisphere of my brain. I was strongly left-footed, I still am, left- eyed – still am, but I had become ambi-dexterous with my handwriting by the age of six, and this stood me in good stead for later, although I still switch sewing from hand to hand, not knowing which side is best, and screw drivers presented me with a conumdrum for a long time. I always take a photo with my left eye.
After the third surgery I was in a coma and had akinetic mutism. I ‘woke up’ on a geriatric ward, though I still could not speak or move. A lot of the staff thought I was in a persistent vegetative state, and would talk about me at my bedside, wondering if I could read, or if I were able to understand what they were saying. I was fed through a nasal-gastric tube, as I was unable to swallow properly. After some times I was fed fluids from a sippy cup and food was a type of custard consistency, fed to me by spoon.