Holding on

Are you still with me?

It’s not a lot of fun is it?!

In previous posts I have spoken of how I held on to many things. I’ve talked about fragment-me and the fight I put up from deep within the illness. In this post I am going to talk some more about how I held on. I am sure, now, that fragment-me is the reason I remember so much because that little part just would not let go and succumb fully to the assault on my brain.

There are lots of memories of different times I tried to hold on, sometimes I only managed this for a moment or two and other times a bit longer and often it was different people who inspired the different ways I clung to reality.

In the first few weeks I spent many many days with Nova’s mum, either at her house or with her at ours. The days would start, sometimes with a hysterical crying session as I talked about in the last post, and then there would be a battle to get me to eat something for breakfast. Nova tried all sorts of combinations of tasty things to tempt me to eat but the ones I remember being successful were porridge and toasted nuts with honey. Some days I was so bad that Nova would have to just bundle me in the car, still in my jammies and dressing gown with wild bed-hair and drop me at her mum’s like that, fragment-me felt ashamed of being in that state in public. Other times I would try to get myself ready. I remember often getting into the shower and after a few minutes something similar to ‘world stops’ would happen. A great, big barrier would descend on my mind and I would completely forget what I was supposed to do. I couldn’t remember how to shower. Once I got in the shower fully clothed and at other times Nova had to shower me herself. So humiliating. Half-washed I would go to dry my hair. A few minutes of success followed by the barrier and downstairs I would come, a few strands of dry hair and the rest a tangled, wet nest. Fragment-me was trying so hard but couldn’t compete with the barrier.

Many days went like this and off we would go to Nova’s mum’s house where I would usually head straight upstairs to the bed that was mine for those horrendous weeks. I would lie there, jarring, for hours until fragment-me would have a burst of determination and I would push myself to get up and sometimes ask for something to eat or have a cigarette. Hours of bargain hunt, or so it felt, and staring vacantly at the TV waiting for Nova to come and get me. Nova’s mum played a big part in the early stages. She took me into her home day after day and saw a lot of my worst episodes. She researched the symptoms to try and find an answer as to what could possibly be happening to me and joined with Nova in the fight for answers. She also witnessed one of the worst of my seizures and some of my most horrible behaviour.

Once I came up with a formula. On this occasion my brain had begun to do the splintering and dissolving and I had somehow managed to hold on. I had stopped it, gained control. Frantically I wrote down what I had done. My writing was feathery and shaky, like a very old lady’s writing. What I wrote is this –

‘Think of situation over last few weeks – Novs, Kai, Mum, Lin, Natalie, Vivi, Lucie, Carol – right up to feeling well and then losing and again going to drag into hell forever, can’t stop. Was the worst thing for all and my doing. Then have to think of the best thing without letting mind wander. Back to work, focus on best bits of life and back to normal life’.

My heart goes out to fragment-me because this little formula, which I really believed would work each time, only worked once. But still I held on.

Once a friend came round with her kids. I was in my bed and Nova and she were outside. I went to join them and one of the kids came and asked if she could have the TV on, the Disney channel. ‘I’ll do it’ said fragment-me, determined that I could carry out the simple task of putting on the TV and finding the channel she wanted. I got as far as putting on the TV and then my brain dissolved. It was literally a feeling of dissolving, my thoughts would melt into liquid and I could go no further. I handed her the remote control and went back to bed, defeated and ashamed.

On another occasion my dad and step-mum, Gill, came to see me. They took me out and wanted to find the local garden centre to go for lunch in the café. Fragment-me tried so hard to appear normal for them, I didn’t want to hurt people and so often, through the haze, I could see the hurt and worry in my family’s eyes and it broke my heart completely. That’s what I meant in my little formula when I wrote ‘was the worst thing for all and my doing’. I was doing this to the people I loved, hurting them and I couldn’t make it better. Dad and Gill were relying on me to direct them and, predictably, we went on a slightly alternative route! We made it eventually and as we wandered through the garden centre some neighbours of mine approached. My heart sank, I was going to have to try to appear normal. Generally my approach to these types of situations was to stay quiet and smile. That is what they must have seen but inside I was grappling with the dissolving, holding on and holding on with all my might.

I held on to people too. During this terrible time in our lives the most amazing devotion and support came our way from our friends and family. Friends rallied, they did our shopping, looked after the dogs, scooped up K at difficult times to keep his life as normal as possible, spent hours and hours with me and stood beside Nova on this journey. As I already said, Nova’s mum, Nova and my mum did the bulk of ‘watching’ me but my dad and Gill, my brother and sister in law, Jamie also helped whenever they could. These people and all of our friends who helped in the background during the ten weeks at home where also what I held on to. Most of all I held on to Nova, she was the rock in the storm.

I mentioned the trip to Ninewells A&E before, when I had a ‘world stops’ episode in the back of the ambulance. Nova had called the ambulance because I had had some sort of seizure and my face had contorted in a way that could not have been within my control. The paramedics found I had a raised temperature and I was taken to Ninewells, Nova followed in the car. We arrived at the hospital before she did and I was put in the waiting room. At some point I decided to take off. It was a compulsion and I didn’t know where or why I was going. I wandered off into the hospital and found myself in a waiting area somewhere else, but this department was closed and in darkness. I lay down on the waiting room chairs and after about ten minutes set back off on my travels. I remember coming round a corner and at the end of the corridor I saw Nova. My heart sang, I knew then that I was safe and I ran into her arms. That hospital visit didn’t go well. I had a huge electrical current seizure but they couldn’t see it. They felt it was psychiatric and I had enough support in place. We left and on the way home I told Nova I was sure someone was doing voodoo on me or that I was possessed by an evil spirit. I needed someone to stop the voodoo and get rid of the spirit as soon as possible.


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