The ghost

I had now had the IVig, plasmapheresis, a whole range of tests and occupational therapy. Nothing had really changed. I was still drooling, shuffling, detached and unable to speak much. I had absolutely no social etiquette and all the main functions of my brain were impaired. Another nasty side-effect of the medication had appeared as well. I couldn’t control my shaking. Lifting a fork from the plate to my mouth often ended in a mess as my hands would shake so much. My legs would start shaking madly for no apparent reason. Of course, fragment-me was aware of this and deeply ashamed. How could I be such a wreck, physically and mentally, and yet still this tiny bit survived.

Nova, mum and everyone involved tried desperately to get me to engage in some sort of activity. They knew I needed to begin to repair my brain. All the annihilated neurological pathways needed to be rebuilt and to do this I needed to do things, try things and relearn it all from scratch. But I couldn’t and I didn’t. I was torn between two places. The outside world and recovery was, of course, my ultimate desire and deep down I knew it, but I could not build a bridge between where I wanted to go and where I was. I floated on the fringes of reality, in my dream world. It was not so much an ‘out of body’ experience as an ‘out of world’ one. I did not feel part of this world, to the point where I actually felt I was a ghost: I had died but my soul was hanging around, watching my loved ones and trying to make a connection. This feeling stayed with me so strongly until only a few days before I left the hospital. I would watch my family speaking to me and I would smile to myself. They think I’m alive, I would think. But I know that’s not true. I know that I’m dead. This is what I truly felt.

Nova tried so many things. She brought me in colouring books of amazing Mandalas, she downloaded audio books onto the I-pod and gave me travel sized board games to play. I did none of it. Not once did I colour in a Mandala or listen to the book. The TV in my little room didn’t work but even if it had I don’t think I would have watched it. Words and stories were still devoid of meaning. I understood them but there was no emotion or response attached, they were just nothings in a world of nothing.

My mum started writing up a daily timetable for me and put it on my wall. I think she thought it might help for me to have a visual structure to the day. It did to some degree but I stared at that timetable for hours as I waited for the next dent in the emptiness. Who was coming to visit, did I have the dreaded O.T?

I still found it so difficult to eat. It was the same as I have tried to explain above. I had no appetite but I knew I should eat. The bridge was again missing though and no energy or drive came through even to eat some food. Unless someone sat with me and made me eat I wouldn’t do it. The effort was so great, both mentally and physically. So that’s what they did, my family. They sat with me and made me eat. And they brought me food. Every single day. Mum would come in the morning before she started work and bring bacon in tinfoil. I had rejected the one-pot breakfast offered by the hospital but I would eat the lukewarm but crunchy little bacon parcel. She would come back at lunchtime and took to making me the most weird and wonderful filled croissants. Everything went in these miniature feasts and she would make sure I ate it all. One day she wasn’t able to stay and as soon as I was alone the croissant was in the bin. Nova brought me a hot meal every night. She would bring the food in a flask so it was usually tagine or bolognese, things that were fairly easy for me to eat. She would eat with me and made sure nothing was left. How she managed to work, try and keep K’s life normal, cook me meals and come and see me virtually every night is beyond me but I thank god she did. Between her and mum I was probably saved from a feeding tube.

As I was no longer violent or suicidal I was allowed out on pass for a couple of nights at the weekends. I absolutely lived for these trips home. Mum would come on a Friday lunchtime and coerce me into having a shower by reminding me that Nova was coming to take me home that afternoon and I needed to be clean and fresh for that. Reluctantly I would shuffle off to the cubicle down the corridor and shower in silent irritation. The shower was designed for people with mobility issues or in a chair so I had to bend in half just to get under it. I’m sure there must have been an easier way but I didn’t discover it. Mum would dry my hair and for the next couple of hours I would sit in agitated anticipation for Nova to arrive. I would see the flash of the yellow and black coat she wore to work and would be off the bed in a second. Inevitably we would have to wait for my pass script to be done and the vast sack of medication to be handed to Nova. I would be so desperate to get out of the hospital and go home that I think it triggered the electrical current to an even higher vibration. I didn’t feel excited as I felt no emotion but I would act as if I was but with no filter for my actions, like an overactive toddler eating blue sweets. I would virtually run out of the main door of the hospital. Sweet freedom just for a while. At home I would have a bath, have some food and see my babies. During the stage when I was convinced Nova, my family and the hospital were in a conspiracy together I used to often cry that they were keeping me away from my babies, the cats! I went on and on about the cats as if my life depended on them.

So I would get home and see my babies. But my body would go into overdrive. I don’t know if it was the no-emotion-excitement or the release of being out of hospital that caused it but the electrical current would escalate and I felt like my body was vibrating at a hundred miles an hour, or whatever measure vibrations are read against. I would flit from trying to do things like hang out the washing or going for a walk with the dogs to lying in bed, drooling away to myself. There was no in-between, no peaceful relaxed state. I couldn’t stay in the bath for longer than a few minutes, even when Nova put lovely scented oils and bubbles in for me and lit the candles. I couldn’t be still unless I was almost asleep. It didn’t stop me from loving the trips home though and to sit and eat a meal at a table, not lying in a bed, was a treat.

I had some trips out with my mum and friends too. Sometimes they would take me into the hospital grounds, just to get some air. Mum would take me to her house or to various tranquil locations and the ghost that I was would try and connect. Try and feel something, anything, but to no avail.

There were some cruel twists in the story yet to come, despite everything, this illness and the harshness of life were not done with me yet. As the antibodies had washed over my brain in the early stages of the illness, causing awful symptom after awful symptom, so they now began to wash out and as they did, the symptoms began to reappear in reverse order. This was something Dr Dalmau had discussed in his famous paper on the illness and I followed his case outline almost down to the letter.


3 thoughts on “The ghost

  1. I don’t know how long you have been thinking about writing this blog Sophie – but it seems to be pouring out of you in torrents as if it has been pent up for ages. It is really wonderful writing, your descriptions are so clear and the pictures you paint of the whole trauma are so vivid. As a reader I am suffering every heart wrenching moment with you, and can hardly believe that you eventually came through it all. The love and determination of Nova and your Mum and family to keep you alive is to be applauded to the skies – I have the deepest respect for their constant efforts – it must have been devastating for them to watch you. It is probably not appropriate to call your blog about this horrendous, and little understood illness a ‘page turner’, but that is what it is and I can’t wait for the next ‘instalment’ xx


    • Jane, thank you so much for your comments and words of encouragement! I had no idea how much I needed to tell this story. I guess it must have been bursting to come out but it wasn’t until I started that I realised! I didn’t think I would be able to find the words to describe it as it was so bizarre but I am so glad that it seems I am managing and people can get inside the illness and what it really felt like. I hope that I am helping others who have or have had the illness by providing an insight as I know that in the first few months there was no way I could put it into words. Thank you for your support now and then, you are a total gem xxxxxxx


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