2016 began under a cloud. Or perhaps I should say, in a fog.
Just after Christmas I got up and found I could no longer see across the room. I couldn’t read the clock, couldn’t read the paper or a book and I couldn’t read my emails. The faces of my family had become pale featureless blobs. A fog had descended around me.
I felt vulnerable and scared. The pressure of hiding how I felt from my family and trying to manage the most simple of day to day tasks was exhausting. I didn’t feel like me anymore and I didn’t much like this new version. I phoned the hospital and my operation date was brought forward to 16 January.
There could hardly have been a worse time for this with the Southern Health scandal continuing to break around me. I could only read emails and tweets with the greatest difficulty and the concentration needed for this task was immensely tiring and seemed to make my sight worse. It felt as if the rest of the world continued to fight for justice for our precious young people, while I was just standing on the side-lines, wearing dark glasses (quite literally) and unable to contribute.
I was afraid that people would think I had just stopped caring. I wrote a short tweet, explaining that my sight had become worse and so I was taking some time away from tweeting and blogging. I had some very nice supportive replies, wishing me well in with the operation and I was grateful for these, but I still felt cut off from the fight and alone in a very foggy place. The end of 2015 slid away without me really even noticing.
The first time it happened was the night of New Year’s Day.
I was woken in the middle of the night. Nico was calling me. I lay very still and forced myself not to jump up and run next door to his room, as I have done a thousand times. I refused to go. I refused to put myself through that torture. I knew that I would fling the door open to find a silent room and an empty bed. I had done it too many times before and I wouldn’t let myself do it again. I lay there with my heart thumping until I went back to sleep.
A couple of hours later it happened again. Nico shouted to me and I woke with a jump. I lay there, again refusing to go, refusing to let myself buy into the fantasy that I would somehow find him there. The next day was hard. I felt under the shadow of what had happened in the night all day. I told no-one what had happened. I think part of me was scared they’d say that they had heard it too.
My daughter was staying with us over the New Year. The MN was still on holiday from work and using the time to see friends and let his hair down a little. Looking back, I can see that having my daughter there was a god-send. Someone to talk to, laugh with and there was also some fairly hilarious nail painting.
I went to bed pretty tired that night but in the middle of the night I woke with a jump. Nico was calling me. I could hardly believe it was happening again. I would not run to his room because I realised I was afraid that I would find him there. I was afraid that somehow I would open that “low door in the wall” and cross over into a separate reality. Eventually I went back to sleep but it happened one more time that night and I said out loud “No, I can’t come”, but saying those words made me shake and weep.
The next day I was alone for most of the day. I wanted to tell someone what was happening at night, but there was no-one to tell. At least no-one who I felt would understand and yet not be upset. I didn’t want to take my feelings and this story and then force someone else who loved him to know about it, talk about it and have to feel this way too.
Night three. It happened again. This time I kept myself awake for the rest of the night, waiting to see what would happen. I don’t know which thought frightened me more; the thought of not finding him there or the thought of finding him there.
By night four I didn’t want to go to bed. I stayed up till almost 3.00pm, hoping to trick whatever was happening. It didn’t work and Nico called me in the cold grey dawn. It was driving me to the edge.
By night five I was going to bed telling myself it wasn’t going to happen that night. It did. By night six I realised that I wanted it to. I wanted to hear his voice. I wanted to answer him. I wanted to feel that link between us.
On night seven I was woken out of a deep sleep by Nico calling out. I woke up instantly, completely clear headed and finally I knew why he was calling me. He was telling me he needed me to keep going – that there was still so much more to be uncovered in our fight for justice. He reminded me that I wasn’t just fighting for me – I was fighting for him and he wanted everyone to know what had happened. He was telling me to get back out there and keep on fighting. So I promised him I would.
The next day Beverley Dawkins called me to tell me that some interesting information had been brought to her attention. Using the Freedom of Information act, paperwork between Ridgeway Partnership and Southern Health specifically talking about Nico’s death had been found and read. It opened up a whole new area which we hadn’t even known about before. I was instantly back in the fight.
Nico hasn’t called to me since – I hope he hasn’t needed to and a few days later I had my first eye operation.