For most of June I had been a ghost, a shadow of myself. Unable to perform the most basic function like feeding myself or communicating in any meaningful way, I barely spoke. I was still in a place where I felt no emotion and this became more and more difficult as my brain made tiny steps towards recovery. I could think but not feel. I can’t tell you how horrible this actually was especially when I knew I should be feeling something but there was just empty blankness.
A report from the psychiatrist on the 1st July states the following:
‘I reviewed Ms Gwyther on 30th June following concern being raised by the ward staff and the Neuropsychologist with regards Ms Gwyther’s reduced affect (describing a lack of emotional reactivity on the part of an individual. It manifests as a failure to express feelings either verbally or non-verbally, especially when talking about issues that would normally be expected to engage the emotions. Expressive gestures are rare and there is little animation in facial expression or vocal inflection) and possible low mood. Ms Gwyther had been reviewed by Neuropsychology and apparently demonstrated acquired impairment across the remains of her executive functioning (Executive function refers to a set of mental skills that are coordinated in the brain’s frontal lobe. Executive functions work together to help a person achieve goals.Executive function includes the ability to manage time and attention, switch focus, plan and organize, remember details, curb inappropriate speech or behaviour, integrate past experience with present action. When executive function breaks down, behavior becomes poorly controlled). It was felt she would benefit from inpatient rehabilitation’.
And so the endless cycle of neuropsychological testing and other assessments began. With this came the first signs of fragment-me kicking out a little in miniature rebellions filtered through the brain impairment described above. You can surely by now have some idea of how this would manifest!
Neuropsych assessments – I hated them! Stroppy, stubborn, independent and determined fragment-me knew on some deep level that there was a major problem with my brain but also refused, in any way, to admit it. To engage with these tests would have meant an admission and so I rebelled in the only ways I could manage. I remember always being asked to list names of animals beginning with G or words beginning with A. ‘Asshole’ I would say, fragment-me, being a smart arse but unable to filter thoughts before they came out of my mouth. I could see the psychologist struggle not to laugh or Nova, sitting in the room with us, trying to keep a straight face. I thought the tests were stupid. I really didn’t understand why I was being asked to do these weird things or what possible relevance it had if I could copy a shape or repeat back sequences of numbers. All my body wanted was release from the torturous electrical current, not to sit in a room and be asked all these things.
Don’t even get me started on O.T. Occupational Therapy. This became the focus of my bad attitude and was the new obsession in my life. How to escape O.T. I suppose it was a lot better than the previous obsessions but very frustrating for my family. A porter would arrive with a wheelchair to take me down to O.T. and I would refuse to sit in it. I didn’t need to be in a wheelchair, I would snarl, hardly able to shuffle let alone walk. So off we would trail down the endless corridors, me in my jammies and baffies, at a snails pace. Once there the porter would park me, in the wheelchair I had ignored, in the O.T department. Please don’t get me wrong when I describe how I felt about this, the staff there were doing a brilliant job but they didn’t know that fragment me was on the up or just how much went on in my messed up brain. On the surface it appeared I was a shell with nothing inside, but that was not the case. I sat waiting for the O.T workers and looked around the room. I thought it was rubbish. I learnt tricks to play on O.T. I must have sensed that they weren’t really sure how to handle me, I was a bit of an unknown quantity and not their usual patient. The illness I had was virtually unknown. So I picked up on this slight lack of confidence and played it to my full advantage. They tried to get me to play scrabble and I think I made a few words and then announced I’d had enough and wanted to go back to my room. They would look at me uncertainly and then comply, not sure if they should push me. They tried to get me to paint, something I had done a lot of, fairly proficiently before I got ill, and I scrawled a big mess over the page. I was not impressed at being asked to paint the trees we could see from the window, unimaginative I thought. I remember the day they got me to do lino-printing. I had to cut marks in bits of lino and then using ink, print my creations onto paper. No problem, thought fragment-me, what a joke to ask me to do this. In fact, what I produced looked like some sort of demented, contorted wolf. ‘It’s a horse’ I told Nova when she came to see me there. ‘Oh really?’ she must have thought. The horse was about as impressive as the plasticine witch I had made a few days before! I knew I had struggled with the lino task. My co-ordination and strength were barely existent but still I refused to accept it.
Apart from the tests and the O.T I also received the next part of my treatment around this time. This was the plasmapheresis (Plasmapheresis is a process in which the liquid in the blood, or plasma, is separated from the cells. In sick people, plasma can contain antibodies that attack the immune system. A machine removes the affected plasma and replaces it with good plasma, or a plasma substitute. This is also known as plasma exchange. The process is similar to kidney dialysis). I had five treatments over two weeks.
I remember being told about it and asking if it would hurt. Then the machine was rolled in to my room. It was huge and reminded me of a giant children’s play kitchen or something similar. It didn’t look real, it looked ancient and in this world of tiny technology, didn’t fill me with confidence. The machine started up and I have never heard noise like it. It roared and whirred and shook like a washing machine. They told me they were going to put needles in my arms which would take out the blood and put it back in. They said I must stay completely still as these needles were big and if I moved it would hurt. I didn’t like that much. The needles were massive, about the thickness of the inside of a biro if you take it out. They went in on the inside of my elbows, where blood is usually taken from, and I was hooked up and ready to go. Each treatment took four hours. For four hours I lay, vibrating not only with the electrical current but also the sounds of the machine, and did not move a single muscle. The needles freaked me out and the thought of them stabbing further into me if I moved was petrifying. Because I was such a ‘unique’ case there was an endless stream of student nurses in the room, seeing the process and listening to the Doctor explain what was happening. I must have heard that story five times but I don’t remember what he said at all. Nova sat with me through one treatment, her mum through another and mine through another.
Nova posted an update for our friends on facebook just at the time I was beginning the plasmapheresis. Until this point I had been so ill and Nova had been so consumed and unable to explain, that many people had just known I was ill, not the true extent. This is what she wrote:
‘As you know…Sophie has been extremely ill since 15th March.
Soph has a rare, or newly discovered illness – anti-NMDA receptor encephalitis. The test for this condition was only developed in 2007 and it took 9wks for Sophie to be diagnosed. She is only the 5th case seen in Scotland, the first at Ninewells. I’ve not updated regularly because it is so difficult to when no one really knows whats happening. There is no set treatment/timing/recovery plan for this terrible condition and all cases are very different…the doctors are educating themselves at the same rate as I am (but with a better understanding..I hope!)
We hope Soph is in recovery..but recovery is a very backwards, up, down affair. She has had treatments, and surgery, and there have been improvements..but we have still a long journey ahead. Next week she starts plasma exchange treatment. Soph is still in hospital but has been getting home for weekends and is still I’m afraid, not really up for visitors. Hopefully that will change soon. I’d like to thank all our friends and families for everything..I really would’nt be coping without you.
The response to that post was indicative of the amazing support we were getting from our friends. Many messages wishing us well and me a speedy recovery.
Even after all this time and all the treatment and care I had received there was a long way to go. I had been in hospital for two months and I have to acknowledge the unbelievable patience and care I was shown by the nurses on Ward 23A at this point. They had chased me through corridors, across car parks, put up with my violence and abuse, cleaned up every time I got an IV-ripping urge and became our extended family during my time in the ward. They really cared and even though they were probably short staffed and exhausted they did all they possibly could for me.
Fragment-me was fighting back now, but the big question was whether or not I would ever fully recover. Would I be left with permanent brain damage. What would become of me and what would this mean for Nova and my family?