In amongst all the chaos of the last few weeks Nova and I had reached the first anniversary of our wedding. We would never have believed, as we said our vows on that sunny day, what lay just around the corner. On the day of the anniversary I was at home for the weekend. Nova made a picnic and we went to Tentsmuir beach. She was trying to make it special, to mark it in some way, on a very low key scale. We sat on the sand and I ate a few bites and the vibrating, jarring inability to sit still, relax or focus on anything overtook me. Can we go back now, I said. And so we did. I feel a poignant sadness when I think of the little scene now. We should have been celebrating in style but Nova was there on the beach with her shell of a wife who floated in a world that seemed galaxies away.
Back in the hospital some of the symptoms from the earlier stages began to reappear. It wasn’t as severe and it wasn’t exactly the same but it was horrendous on the same scale for me. The shaking and tremors were present but no-one was sure if that was the illness or the medication. The seizures got worse. I had always had the electrical current but this was something more. I would be rigid and terrified as they gripped me and they seemed to be coupled with compulsions. At my mum’s one night I was overcome with one of the episodes and the only way to cope with it was to pace and pace relentlessly. It seemed to burn some of the energy being generated by the seizures. I walked in circles round and round her cottage and I had a pain in the base of my skull and my neck that was agonising. It’s never going to stop, I remember crying to her. She tried to calm me but I kept pacing. Eventually I lay down and folded a pillow in half. It seemed to ease the pain in my neck and, exhausted, I fell asleep. I slept with a folded pillow for weeks after that.
I had more of these attacks in the hospital. Again I remember one with my mum and we walked the corridors at least twenty times before I settled. We would get up and I would shuffle as fast as I could along the winding warren till we got to a certain point and then we would turn for home, my little room. Once back I would lie on the bed for perhaps a minute or two and then I would be off again. Relentless.
It stays with me how well people responded to my behaviour. It must have looked absolutely insane to anyone on the outside but whether it was Nova, my mum, Nova’s mum, my brother or any of our family and friends no-one ever made me feel like I was mad. On those pacing sessions mum would just quietly walk with me and try to reassure me. I remember in the early days our friend Viv would sometimes look after me. She was always so calm in how she was with me and would accept whatever strange notion I came up with at the time, never making me feel bad. I appreciated this so much from all the people around me. It would have been so easy to panic or get stressed by what I was doing.
There was a new phenomena which appeared at this time. I now know this actually exists but I was having smell seizures. These are a type of seizure where you can smell odours that are not actually present. Mine were of vomit and excrement. Lovely. Needless to say I didn’t particularly enjoy this new delight and it really confused me.
I was very agitated again and had begun to moan out loud a lot and sometimes scream, out of the blue. This happened one evening with my mum and I remember the fear on her face. I really screamed loudly and the nurse came running. Why did you scream, she asked me. I didn’t know why and I couldn’t explain why. The vibration, the endless tension in my body, the rigidness, the constant electrical current pounding through my limbs was why, I had no words for it.
I had become aware of the blue pill they gave me. This was lorazepam. Lorazepam is used for the short-term treatment of anxiety, insomnia, acute seizures including status epilepticus and sedation of hospitalized patients. I started to ask for it myself whenever I would have an episode of agitation or seizure activity. I remember Lucie was once there visiting me and I asked her to get me a blue pill. It was the only medication that I actually wanted or felt I needed in the whole time I was ill.
The doctors told Nova and my family that it seemed likely that I had permanent frontal lobe damage and brain injury rehabilitation was being discussed. I became aware of this on a visit to mum’s. Being the ‘raker’ that I have always been I had a quick scan at some cards she had on her mantel piece. One was from a close friend of hers and talked about me and my frontal lobe damage hopefully not being permanent. I still had no emotional response to anything but I took this information in and it troubled me. I didn’t really understand but I didn’t like it.
In the meantime, Nova was having a debate with the doctors about the anti-psychotic medication I was still on. She wasn’t sure how much of what I was now displaying was the medication and how much the illness. She wanted a window with me off the anti-psychotics to try and get a picture of this but the hospital had other ideas. The brain injury rehabilitation specialist was sent in to see me. He tried hard, this doctor, and spoke to me rather than to my mum, who was in the room too. He talked for quite a long time and I took absolutely none of it in and to be honest, I was tired of doctors and medical talk and being a patient. There was talk of me going into a rehab unit for six months and he also wanted me to be put on anti-depressants for my ‘low’ mood.
Finally Nova won this particular battle and they agreed they wouldn’t try me on anti-depressant and to stop the Haloperidol, the anti-psychotics. Nova’s argument was that, even though I was on a lower dose now, I had been on such huge amounts for such a long time that it would have built up in my system and needed a chance to wash out. The doctors were worried I would lapse back into the insane violent behaviour from before.
For weeks Nova had been coming to see me and tried every time to make me laugh or smile, respond in some way. She would play the clown and make jokes about the consultant or wind up the porters with a bit of banter. She tells me that the moment she saw a glimmer of hope was one day when she said she loved me and I responded with, I love you more. This was something I would have said before the illness took hold of me and it was the first sign that I was in there somewhere. I was becoming a little bit more aware and I remember Nova had brought in our wedding album to show the nurses. It was partly to let them see how I had been before. I got so upset. No-emotion upset but I knew I was nothing like that person any more. I knew I was a skeletal, acne ridden mess. I knew my hair was a disaster and I looked like ***t. I just wanted to be me again.
It was at this time that I was told about my step mum, Gill. She had been in my life since I was 12 and was my friend above all other things. She had been a supporter and a confidante who had seen me through all the major moments of my life to this time. I had spent the Christmas before I fell ill, with my dad, by her hospital bedside as she went through an intensive treatment. Before I became ill we had hope that this had worked and that the next course of treatment would give her and us some more precious time together. I loved her so much. Gill is very ill, I was told, she hasn’t got very long left. I knew I should be feeling something but there was just the nothingness. I can’t describe how hard I tried to feel. I lay in my bed and repeated it to myself over and over. Gill’s dying. It felt like the only way I could make sure I responded. I couldn’t feel nothing or do nothing about this, the only thing to do was to say it in my head and make it real. Make sure it was significant in my brain out of respect and love for her. I just wish I had built the bridge quicker and asked to be taken to see her but the bridge was still missing between my world and everyone else’s.
They took me off the drug and waited to see what would happen.
The most wonderful and most devastating week was upon me.