Stepping stones

I was off the anti-psychotics.

There wasn’t an instant change or a dramatically noticeable moment when I got better but there were slight, tiny edgings forward over that last week in hospital. Tiny but momentous.

I wasn’t as anxious or tense. The shaking and tremors calmed down and there brief moments where I was able to hold a conversation that made some sort of sense.

I didn’t notice anything drastic. The electrical current slipped almost unnoticed away from my body but there were different things to take my focus that happened in that week.

Lucie came to visit me and for the first time in five months I engaged in a normal activity. Basic but normal. She managed to get me to play a game of snakes and ladders! Before this week it would have been inconceivable. The electrical current and overdrive body would have meant there was no way I could have concentrated or had the control over my body to do that simple thing.

There was a little bit more of a response from me and words flowed just a tiny bit more freely. If you’d have blinked you would have missed it but I was beginning to build, not a bridge, but one or two stepping stones across the abyss.

It was the 25th July and I was at my mum’s house. I think it was in the morning and we were sitting outside having a coffee. I remember exactly where I was sitting. The phone rang in the house and mum went in to answer it. I still floated in my other-world and still believed I wasn’t really alive. She came back out of the house and tears were flowing down her face. She sat down and told me that Gill was gone. I remember my words, words from the other world, the world of unreality and nothingness. I said, ‘I’m not crying but I’m crying inside’. I knew that had I been well I would have been breaking my heart into pieces, my beautiful, wonderful step-mum was gone. Mum and I went for a walk, I could now walk rather than shuffle, and I said to her that I wanted to go to the funeral. I was able to say this, to verbalise something important to me, that hadn’t happened in such a long time. Another stepping stone had been laid down. I only wish it had all happened slightly sooner so I could have asked to go and see her before the end, to say goodbye and tell her I loved her one last time but the difference of a week was great and I don’t think I would have been considered well enough to go even if I had requested it. I remember mum said that they were having a case conference at the hospital about me and we would see what they said then.

It would be months until the grief hit me, like a ton weight slamming into my body. It would take months for the part of my brain that was the emotional centre to begin to heal and for feeling to come back into my life. The nothingness was like a hell in itself.

The week moved forward and it was the 27th July. It was my mum’s birthday and I managed to tell Nova this so we could get her some flowers and a card. It was the day of the case conference too. Fragment-me had had a bit of a rebellion about it and announced I didn’t want to attend. I didn’t want to be in a room full of doctors talking about me, I was tired of having no voice. Nova had managed to persuade me though and she, mum and I trooped into the room where the doctors and neuropsychologists and nurses were sitting. I don’t really remember the conversation but towards the end of the meeting I became aware that they were talking about me going home. I could not believe what I was hearing. It was really happening. Nova and I walked out of that meeting and started to pack up my room. In two big, white bags that the hospital gave us, we stuffed all the magazines, books, cards, sweets, clothes and junk that I had accumulated in the last three months.

Three months, every second of which had been a nightmare in a different way, every second of which I had raged against and trembled in the face of. It was over. I was going home. I had believed I was trapped here forever, that I would never get out or I would die here. I had heard talk of rehab clinics and months of yet another clinical setting. But I was going home.

We walked out of the hospital and were on our way. I remember arriving home and being utterly defeated at the thought of trying to put away the stuff in the bags. I couldn’t comprehend how to start this task. I still had a long way to go.

But I was home, I went on facebook for the first time since March. I wrote simply – Sophie Gwyther….is back! What a response I got. It was a torrent of love and it still brings me to tears to look back on it.

Nova wrote this as her status –

‘The recovery from NMDA encephalitis is long, and up n down… I write this tentatively…

BUT, with a big grin on my face and tears in my eyes 🙂

Over the weekend and the past few days Sophie has improved greatly, since pheresis and with reduction in much so that I feel I have my Soph back!!!

..and, she was today discharged from hospital after the case conference 🙂 Soph will still be undergoing treatment but it looks like she’s turned a big corner!’

The first few stepping stones were down and I was back where I belonged. Fragment-me prepared for the battle ahead, the real recovery, the return to myself. I associated hospital with being ill, sick and broken. Now I was home, fragment-me was determined to defy the illness and this brought about a new set of obstacles for me and my long suffering family to overcome!


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