The whirlwind nightmare had come to an end. The ever present horror and terror for me and my family was over. It was replaced by new challenges in the weeks that followed my ‘release’ from hospital, (This was my terminology, I had been released). It is hard to describe how you go about picking up the pieces from an ordeal on that scale, both for me and for those who had cared for me all the way through. I don’t think any one of us came out of it the same people we were before.
I had made enough progress to be allowed home and now I had been off the Haloperidol for a few days there was quite a change. Nova says it is like I ‘woke up’. I don’t remember it happening, I just know that I wasn’t on the other side of an abyss any more. The stepping stones had become a bridge and now I was so close to the other side, to reality, but there was a veil between it and me. So close I could almost touch it but still separate, still alone in my place. I remember the first time Viv came to see us when I came home. She brought a bottle of champagne and she had written our names on it in biro. I noticed that. I sat outside with her and Nova and I listened to the conversation. I couldn’t really join in yet, from behind my veil, but I could listen and I could understand. The whole world wasn’t a vibrating, confusing place any more. It still felt quite far away and my thoughts moved slowly but I knew when to smile or nod and I took things in. I remember my sister-in-law Jamie coming round for the first time too. She cried when she saw me and I was not sure why. I now know it was because the life had come back into my eyes. I actually looked like Sophie again.
I went into denial soon after my release. As I described in my previous post, I associated the hospital with the ill, damaged me. Now I was home I refused to accept that there was still anything wrong with me at all. I insisted I was better and began to kick out at my family for treating me otherwise. I didn’t want to be watched all the time and have people with me to take care of me. I didn’t want to stay at my mum’s for a few nights, not because I didn’t like being there or with her, but because I wanted to be at home and well again. I clearly wasn’t anywhere near well again. Yes, I had made progress, but I was still unable to do basic things like choose my clothes, Nova would pick out outfits for me in the early days which was a challenge as I was still very thin. I was still on a mountain of medication – Zopiclone (for sleep), Omeprazole (a counter to the steroids), Prednisilone (steroids), Lorazepam (my trusty blue pill) and Mycophenolate (an immune suppressant). I slept A LOT. I guess my brain must have needed it to heal and my sleep had been such an issue throughout that I had a lot of catching up to do. I fell into a pattern. I would go bed but struggle to fall asleep. Now that I had stopped the anti-psychotic drugs the steroids really took effect, I was ravenous. I would get up in the early hours and go downstairs and eat a big bowlful of cereal. I would then fall asleep on the sofa and when Nova got up in the morning she would send me back up to bed. There I would sleep until I was woken, usually by my mum, at around eleven and I would reluctantly get up. Mum took to taking me out for lunch and we visited many nice places over those few weeks.
I still did nothing though, no activity other than sleep, eat, go wherever I was taken and walk the dogs. That was my life. Nova would try and give me a push and tell me that I needed to be doing things to help my brain recover. There was nothing wrong with my brain, according to me, and I was perfectly fine. It must have been so frustrating.
I think it must have been a protective measure that my body put in place, this denial. I did not want to think about being ill, about what I had just been through, let alone talk about it. I had spent months being this other person, another Sophie, a sick, crazy, scared and vile Sophie. I didn’t want to and couldn’t go there yet. Fragment-me had grown into maybe half-me and was utterly determined and focused on the future, going back to work, driving again (I had had to surrender my licence due to the seizures associated with NMDAR) and above all else, being INDEPENDENT. I did not want to need anybody. I had been a capable and functioning adult before all of this and that is what I wanted back. So Nova would try and help me along, encourage me to do these ‘normal’ things but half-me would refuse as I was fine. We were stuck.
I still had no emotions at all. Unless stubborn bloody-mindedness counts as an emotion? The only time in all these weeks that I showed any feeling other than terror or rage, was at Gill’s funeral. I am not going to talk about my memories of that day as it is and was a time for the family, but as we listened to the beautiful eulogies being read out a single tear rolled down my cheek. Just one. The only shred of emotion, in a little droplet, I saved it for Gill.
I began to have times when I was left alone in the house. It must have taken an awful lot for Nova and my family to feel safe enough to do that. They had been through such immense trauma watching all this and fighting for me, living on nerves and the fear they may lose me. I spent those times doing nothing, nothing at all. My days were still empty and bleak but I couldn’t seem to do anything to help myself. I didn’t know where to start. Where to begin rebuilding the whole of myself that had been ripped to pieces by this illness. It was overwhelming but half-me wasn’t the type to give up, any more than fragment-me had been and little by little I began to move forward.