The Gift

I went back to work on 24th October 2011, nearly 8 months after the first symptoms appeared. 8 months sounds like just a number, it doesn’t mean much to read, but it was every second, minute, hour and day of that 8 months that Nova, my family, friends and I battled through to make it to this moment. It was the longest time. I lost the best part of a year of my life and spent it in an unimaginable hell. This post will be my last but it is not the end of the journey. This journey will not end, what happened to me changed me and my life and altered the course of my future, in this post I will try my best to summarise the past three years and the profound changes that have occurred as a direct result of our fight with NMDAR Encephalitis.

I went back to work and after a month of a phased return I was back full time and fully immersed in my role. For about a year after this I operated at 100 miles an hour. I went for it with all my might. I must have been like a juggernaut to those around me as I fired through life with all the energy of someone who thought they had lost it all. I felt my brain working, I could actually feel it whir into action when I had a problem to solve or a situation to deal with. It was the most amazing feeling in the world. I got high on it. I laughed and sang and thought and analysed and probably drove everyone half crazy. My zest for life was off the scale. I sustained this for a year and then I began to level out to a more sensible pace. The zest and joy didn’t disappear at all but they mellowed into a more relaxed and contented mode.

NMDAR had not fully left my life and there were still some hard times along the way. When I had left hospital tests showed that the level of evil anti-bodies (the ones that had been attacking my brain) in my blood was negative. Over the next year they steadily rose each time I had a test until they were back up to high positive. At one point it was suggested that I needed more treatment and I might be put back on steroids (I had come off these in November 2011). I freaked. No way on earth. Luckily the main consultant overseeing my care did not think it was necessary as I had no symptoms. Slowly the results reduced and eventually I got a test where the antibody levels were back to negative. That was a happy, happy day. I had to get regular screenings of my remaining ovary (the one that had housed the cyst had been removed during surgery) to make sure there were no further teratomas. One of these scans showed a new cyst had appeared. It was 10cm and they said it was consistent with a dermoid, a teratoma. I couldn’t believe it, surely this couldn’t happen again. They spoke about the need to remove it surgically and  I faced the prospect of losing the only hope I still had of ever having a child of my own. To say I was devastated would be a massive understatement. The consultant at the Assisted Conception Unit wanted to double check this cyst and it turned out not to be a dermoid. I could breathe again but the rollercoaster of emotions this episode produced was pretty major. I had to take the immune suppressant medication for a year after coming out of hospital. I didn’t have many side effects apart from occasional nausea and catching regular colds. Somewhere along the line the defiant, stubborn part of me appeared and made a decision to halve and then quarter that medication without telling anyone. I know this was a bad decision, it was selfish and irresponsible but I so desperately wanted to be free of drugs and in control of my life again. Luckily it didn’t have any negative effects and after a year I was medication free. About six months after going back to work I suffered with incredibly painful spasms in my back. I had never had issues with my back before and this was excruciating. I went to the doctor and got painkillers but also took myself to an osteopath for help. I could barely walk. He asked me if I had had an accident or a fall and at first I said no. Suddenly it flooded back to me, the fall over the bannisters at home, all those months ago. In tears, I told him about this and he thought that during that fall I had really injured myself and twisted my pelvis. Because I had then spent so many months lying in a hospital bed I had not felt the effects. It was only now, back on my feet and active, that it had manifested in this way. He helped me over several sessions and I haven’t had any problems since. Around about the time of my surgery, Nova spoke with some of the doctors to see if there was anyone who might be interested in using my blood or the teratoma to do research into NMDAR. Amazingly someone came forward and now, in Ninewells, there is important research going on using my removed bodily bits and bobs and I have been up to the lab to meet the team and find out about what they are doing. I am so happy that Nova had the foresight to do this as she knew I would want something positive to come of the horror we were in.

The relationships in my life were affected on so many levels it is impossible to describe but the main one is, of course, that of Nova and I. She had saved me twice now. She saved me when I met her because I knew I had met my soul mate and I could be at peace with her and she had saved my life through the endless fight she staged against this illness and the lack of knowledge in the medical world. We had already been through some pretty major traumas just to be together but this year, 2011, tested us like no other. We both came out of the darkness as changed people and our paths diverged completely. I had been in the illness, deep in the horror and misery of losing my body and mind. Nova had been on the outside, watching a nightmare unfold for the person she loved and shared her life with. The two experiences were so different and our reactions after it was over were also worlds apart. There have been times when it felt like we might not make it through but the love we have for each other has proven to be made of steel. It has been bent to breaking point by NMDAR but ultimately it couldn’t be destroyed. It has been hard, so hard at times, but three years down the line our paths have come back together so we are once again walking the same one and finally it feels as if we truly made it through.

My journey to becoming a mum to my own child did not make it through the nightmare. I had to wait a year after I came off the medication completely before I could start the process of trying again. It was a long, long wait but I held on to my dream and my hopes. In early 2013 we got the chance to try again. I had one treatment and found myself on the crazy ride of emotions once again. I so desperately wanted this, I absolutely yearned to carry my own baby and join the exclusive club of motherhood. It didn’t work and I was destroyed. The next attempt saw me start using hormone injections to stimulate the follicles and this time it worked too well, there were too many and the risk of a multiple birth was too big for the hospital to let me carry on. They advised a months break from treatment and then we could give it another go. During these few months I changed. I lost my zest for life and my joy at being alive and became consumed with worry, fear, sadness and bitterness when it didn’t work. I was so unhappy, so angry at life and what had been dealt to me. It is a pain beyond words to want a child so badly but not be able to realise that dream. During the break after the last treatment I noticed that the weight lifted off my shoulders. Because we weren’t trying I wasn’t consumed, I wasn’t thinking about it every second of the day and I became me again. I spent that summer making the hardest decision of my life. I realised that after all that had happened to me I had come through it a stronger person, a more complete person. I had coped with what happened and I hadn’t ever had a moment of falling apart. I had grabbed my second chance by the proverbials. I realised that this other battle, the one to have a child, had the potential to break me once and for all. It was the one thing I couldn’t cope with. The emotions it provoked were too strong, too much. It had been such a long fight. I didn’t want to fight any more. I made the decision to stop trying. I looked at what I had, my beautiful Nova and the boy I loved with all my heart. Our amazing life together and all the wonderful people around us and I decided to accept that this was enough. I could have carried on but I didn’t think I or my relationships would survive if it failed. This way it was my decision and as much as it broke my heart, I still think it was the right one. It has taken till now to be able to talk about it without crying but I still feel the tears welling up. I have dreamt of being a mum since I was a child myself but I accept that this was not my path. This pain is tucked away in the corner of my heart with my sorrow at losing Gill and our lack of a final goodbye.

I have learned so much from what happened to me. To pick up on previous threads I learned the magic of the relationships and people in my life. When I fell so many arms reached out to catch me and my family. I have seen a picture quote on facebook recently, all about how you find out who your true friends are when things are bad. I have to say that every single one of the people in my life was there when I needed them. Not one person let us down in any way. From my amazing family to the small circle of friends who saw me in the worst hours to those who sent cards, flowers, balloons, messages, wishes, prayers and love, I will be forever grateful. I treasure my friends now in a way that I didn’t before. I always knew the importance of friendship but now I know, sometimes your life can depend on it.

I learned one huge lesson. To feel is to be alive. Before I fell ill I would struggle with negativity, self doubt, anger and all the other crazy things we put ourselves through. Obviously I still have times when I feel angry or sad or self doubt creeps in but now I am glad to feel these things. Having been in a place where I felt nothing, just blank, empty nothingness, I know that to feel is the biggest gift we have as humans. Without it there is no reason, no point and no life. We would just be shells, empty shells. To feel is to experience all the wonder, joy, worry, anger and love that life has to offer us. When I feel angry now, I smile inside at the same time, I let the emotion be, I allow it, don’t fight it, acknowledge it and then let it go. I savour every moment of feeling.

In some ways it seems to me that the illness stripped away layers of negative emotional habits that I had built up over the years. Habits like self-hate, anxiety and catastrophic thinking. When I emerged from the nightmare it felt like I had been cleansed in some way. So many of my neurological pathways had survived intact, like playing the piano or reading a book, but the ones that had served no purpose were gone. This has been an amazing gift. I feel that I can see so much more clearly now, things seem less complicated and although I still worry about getting things wrong or hurting those I love, I feel a strength within me that I know will not be broken. I really was dragged down into hell and I survived, I came back fighting. Nothing could ever be as terrible as these few months. I know that I will face hard times in the future, I will lose people I love and have hard decisions to make. But never again will I suffer hour after hour of torture at the hands of seizures, hallucinations and a melting brain. I live with the possibility of relapse, no-one knows enough about this illness to say for sure that I am through the woods. I used to worry about it but now I just live each day as fully in the present as I can. I could drive myself mad thinking about the possibilities or what has happened before, there is no benefit to doing this so I live in the now and try to enjoy each beautiful moment. I have been given a second chance, a second chance with the overwhelmingly precious gift of realising how magical life really is.

I went on a mission over the last three years to prove to myself that I was still whole. I went back to University and did a post-graduate certificate and passed with distinction. This was my ‘back atcha’ to permanent frontal lobe damage. I became a Zumba instructor. This was my ‘back atcha’ to the me who drooled and shuffled and couldn’t even feed herself. I changed jobs and said goodbye to the colleagues who had been like a family to me over the years. I have spent the last year getting to know my new work-family and I am honoured to spend many hours each day in the company of an amazing group of women. They are kind, caring, passionate, feisty, strong-minded and all unique. Work is still hugely important to me and from the months that I was kept from it, I know that it is a fundamental part of my life. It is still a piece of my identity but I have tried to balance it a little bit more. Before I was ill there were times when it felt like it was my life. Now I am thankful for the chance to go to work each day, although I still have times I wish we would win the lottery and I didn’t have to drag myself out of bed at 5.45 am. Working is also a gift. I am grateful to work with the women who are my colleagues and the women and children we try to support each day. To be considered able and skilled enough to be in a role that is more than just a job is incredible. The job is still part of a cause and I am glad to give what I can.

I hope so much that by writing this blog I may have helped someone who has a loved one going through the illness or who has suffered it themselves. It has been very emotional to go back into the worst times of my life and relive how it felt to experience it. It has been therapeutic, I didn’t realise how much it would be when I started to write. I feel it is now time to really let go, I have told the story as best I can, the voice that was silent for all those months has had it’s chance to speak and be heard.

I thank all of you who have taken the time to read this and spread the word. All the messages of support have been amazing. I hope that what has shone through as you have read is that although this is a story about a monstrous illness, above that it is a story about love. It is a story about Nova’s love for me, my family’s love and my in-laws. It is a story of the love of friendship. It is a story about my love for all of them and how I held on to that all the way through. The love that surrounded me in the darkness was incredible and I knew it was there, I felt it and it saved me. I hope I have honoured each and every one of the people who held out their hands to me and pulled me out of the abyss. I will never be able to express my gratitude. Nova, Mum, Dad, Gill, James, Lin, Domi, Jamie, Lucie, Viv, May, my boy, the doctors and nurses at Ninewells, the registrar who ultimately diagnosed me and saved my life and everyone else – thank you from the bottom of my heart ❤

Out of the wilderness

On the 12th October Nova and I set off once again to my ‘home from home’, Ninewells. We went down to Ward 23A to say hi to all the amazing nurses who had looked after me so well. They were like an extended family now and welcomed us back with hugs and smiles. We then wound around the few corridors to the neuropsychology department for the appointment that would make or break my hopes for a return to work.

I went into this appointment on my own and began to plough my way through the word tests, the drawing shapes tests and all the others that, by now, seemed so familiar. The results were good. The doctor wrote in her summary:

‘ Sophie’s neuropsychological profile is characterised by a range of performances within the high average to superior range and well within expectation given her age and level of intellectual ability. It is very reassuring to see from today’s assessment that significant improvements have been made across the areas of spatioconstructional skills, processing speed, delayed recall of verbal and non-verbal information and executive functioning. Given that Sophie has only been out of hospital for approximately three months, her cognitive recovery is proceeding very well. Executive skills are often the last to improve due to them being very complex skills involving different areas of the brain and different networks. It is very reassuring to see today that these skills have improved vastly in Sophie’s case and over a fairly short period of time’.

She went on to say there was no reason why I could not return to work and emphasised the need for a phased return to take into account the fatigue I was likely to experience as my brain had not been functioning at a consistent level for a prolonged time period.

Fragment-me, half-me, three quarters me had WON the battle! I was now just ME. My brain was working again, there was no permanent frontal lobe damage, no need for brain injury rehabilitation. Me, Nova, my family and friends and my stubborn, defiant soul had done it all by ourselves. It really felt like a miracle. The respect I have for my body and particularly my brain, and the healing they managed to achieve, is boundless. It seemed impossible but it had happened.

I now had a date for a return to work in a few weeks, I was excited and terrified. Would I be able to do it? Would I fail? What if it was all too much? Despite all my fight and determination, I had seriously lost confidence, unsurprisingly, and I knew the only way to find out was to fling myself back in and swim for my life.

Over the next couple of weeks a couple of things stand out as significant. Only two days after the assessment I drove, by myself, to do the weekly supermarket shop. It was one of the sweetest moments for me. I felt so independent and capable again. I drove, I read my list, I found all the right items, I paid with my own card and packed all the bags into the car. Only ten weeks prior to this I had not even been able to walk, talk or dress myself. Supermarket shopping – who knew it could bring such joy!

We also went on a day trip to Landmark adventure play park with K and a friend. I managed to do the tree top rope course, despite being petrified, and this was another moment to be savoured. Tottering around on ropes in the trees…can you feel the happiness and freedom I felt right then. My body did what I wanted it to do, I had co-ordination, balance and strength again. I wanted to shout it to the world. This is a miracle, every second of every day that we can move and stretch and laugh and connect is a miracle. Don’t take it for granted, it is precious beyond belief.

October 24th dawned and with it came another ending and another beginning. It was the end of the fight for survival and recovery, it was the end of the dark, twisted nightmare, the fear and the worry. It was the beginning of the new person that I was evolving into. It was the beginning of life after NMDAR Encephalitis.

The mission

After the first month back home I had begun to make the steps I talked about in my previous post. Just little baby steps but they seemed so significant to me. As we moved into the second month, September, I took more and more steps towards full recovery.

In early August an amazing community of dance friends held a fundraiser to help Nova and I. Because I had been off work for so long I had run out of sick pay and Nova had used all her wits to keep us afloat. Things were really tight though and this was such a huge help. Even the travel and parking at the hospital when I had been in was a massive expense. At this event I danced again for the first time and Nova told the audience about the illness and how much they were helping us. We will not forget the generosity and support shown that evening.

I still read like there was no tomorrow and the living room was beginning to resemble a library as pile after pile of books sprung up all around. I took the bus into town a few times, mainly to get to a book shop to feed my insatiable thirst for words. I had been forced to surrender my driving licence due to the seizures and waiting for it to be returned to me was one of my main obsessions. To get my licence back would mean a freedom that I had been used to for the last 17 years. It was fine to get the bus but to be able to drive again would mean going places and doing things would be so much easier. It was also a crucial step in being able to go back to work.

I cooked my first meal. It was a pork casserole recipe that my mum used to make when I was younger. Another triumph in a series of mini-miracles for me.

I drew a picture that actually resembled what I had intended.

I walked like a human being again, not a zombie. I walked the dogs for miles.

I did housework. There wasn’t a lot else to fill my time apart from reading.

As my brain repaired and the miracle of recovery became more and more real, I began to itch with the desire to get back to work. I needed to use my brain, to tackle problems and find solutions. To be around people and doing what I loved best. Patience was a lesson I was being forced to learn but I didn’t take to it kindly. The last six months had been like my worst-possible nightmare coming true and I didn’t want to think about it, to look back or to deal with it at all. I wanted nothing but to accelerate into my future, into health and fulfilment and independence. I remember Nova trying to persuade me to look at the facebook support group page which had given her so much information and support, but I was having none of it. She talked to me about her worries that at some point I was going to be overwhelmed by what had happened and the magnitude of the experience and that I might crash with the emotion of it all. I wouldn’t listen. I was focused, I was well and I was going back to work, that was the sum of my view at that time.

I struggled with being on the steroids and the huge amount of weight I felt I’d put on. Considering I had been around 7 stone when I came out of hospital it was quite a lot. I felt disgusting. My hair was still thin and damaged from the drugs and fluffy, baby hair was coming in place of what I had lost. My brain began to catch up with reality but wasn’t happy with the slower pace of the rest of my body.

My emotions continued to come back and this was possibly the most magical part, for me, of the journey to recovery. Although some of the emotions were incredibly hard, to be able to FEEL again was like a gift from heaven itself. I felt the full force of grief for the loss of Gill and I cried rivers over our missed chance to say goodbye. I felt guilt for all I had put my family and friends through. I felt shame at what I had been reduced to over that time. I felt a soaring JOY beyond any words at the fact I was alive and well. I felt, nothing could ever be more normal and natural and right.

It has probably taken the last three years to absorb the impact of what happened on some of my relationships, purely due to the incredible trauma my family suffered as I was ill. One relationship that needed to be rebuilt quickly, though, was that one with my amazing step son. I had been a part of his life, virtually every day, for the past six years and I had suddenly disappeared. Nova did an incredible job, with the help of friends and family, to keep his life ticking over with some sort of normality, but it can’t have been easy for him at all. Suddenly I was back and I know he was happy about that but we had to readjust to each other again and it took time. Thank god he is an accepting, forgiving and amazing little human and, considering all that had happened, it didn’t take too long.

On the 30th September I got my licence back!!!!! I was on the road again and free as a bird!

We moved into October and I faced up to a neuropsych assessment once again. Only this time I was hoping against hope it would show that I had recovered enough to return to work.

One giant step

I spent a few weeks in this distant, rebellious, stagnant state. On reflection I think I was scared to try things, in case I couldn’t do them. I well remembered my experiences with O.T and that I had struggled to do things I would have had no issue with before. To fail or be unable wasn’t a good feeling for someone who was determined they were fine again.

Friends started to come and see me. Friends who I know had wanted to before, but couldn’t because of how very ill I had been. Some of the first were my work colleagues, that band of sisters I spoke about before. Three of them came to the house and I opened the door to the faces I had missed so much. They came with flowers and hugs and it was just a delight to see them again. It was a gentle visit, Nova hovered nearby, always watchful to make sure I was ok. My veil had become a little bit thinner and I enjoyed having some conversation with them. I was still very fragile, Nova had had to pick out clothes for me that morning. I didn’t say a lot but I could join in, if slowly and a bit hesitantly. My hair had thinned from all the drugs and I was beginning to puff up with the steroids but in just over a week of being at home I sat round the table with my friends and caught up on the work gossip.

My previous boss came to visit. I now know how much of an honour this was as she is absolutely petrified of cats! To come into our house was a big deal for her. She brought me garlic snails, remembering that I loved them from before.

We went to stay with my dad for a few days and went to Lucie’s for dinner. It was all progress but I still wasn’t there yet.

The real turning point for me came one day, when Nova’s persistence finally paid off, and, alone in the house, I picked up a book for the first time in five months and started to read. Books have always been the place I escape to when I am sad or ill or in pain. When I first fell ill one of the first things I noticed was that I couldn’t read anymore. I could see the words but they meant nothing. This time it was different. I read that book from cover to cover before Nova got home from work. My elation was probably also the first trickle of emotion coming back as well. I was so pleased with myself, so relieved. I could read. It was heaven. No more hours and hours of emptiness because now I had my books. From that day I read like a woman possessed. I read virtually every book in the house and then I bought more. It was three months from this time until I finally went back to work and I spent the majority of it reading.

Because I had had success with the book I started to try other things. I remember the first time I plucked up the courage to play the piano. I was so scared it would be forgotten to me, all those years of learning and practice undone, but when I sat down to play it flooded back into my mind and my fingers ran across the keys. I was sky-high again. As soon as Nova came through the door that evening I was in a rush to tell her. I can still play the piano.

Then there was the day I baked a cake for the first time. All by myself. I am actually crying as I write this because I remember the sheer joy of the shreds of normality that were starting to come back into my life.

I had lived in a nightmare for what felt like the longest time. I had been reduced to the absolute minimum of myself. I had lost everything that I felt made me who I was and I had suffered humiliation and shame at what I had become. Above all, I lost my dignity. To have it begin to come back is beyond description in words. Sometimes, quite a lot of the time actually, I feel that what happened to me was a gift, a horrendous, terrifying gift of course, but it gave me the ability to savour and delight in the most tiny of everyday things. Reading a book, playing the piano, having a conversation with friends, baking a cake and being at home. This has never left me in the three years I have been well. Not for one single day.

Half-me was now almost three-quarters, although I would have argued about that, and I felt I could face some of the hurdles I still had to overcome. I needed to get my driving licence back, to be told I was well enough to go back to work, to use a bank card and take care of my own finances, to go places on my own and to regain my independence. It really was a battle to try and get me to take things slowly, I was on a mission.

Denial from behind the veil

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.

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…..so 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 medication..so 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!

Reverse order

In amongst all the chaos of the last few weeks Nova and I had reached the first anniversary of our wedding. We would never have believed, as we said our vows on that sunny day, what lay just around the corner. On the day of the anniversary I was at home for the weekend. Nova made a picnic and we went to Tentsmuir beach. She was trying to make it special, to mark it in some way, on a very low key scale. We sat on the sand and I ate a few bites and the vibrating, jarring inability to sit still, relax or focus on anything overtook me. Can we go back now, I said. And so we did. I feel a poignant sadness when I think of the little scene now. We should have been celebrating in style but Nova was there on the beach with her shell of a wife who floated in a world that seemed galaxies away.

Back in the hospital some of the symptoms from the earlier stages began to reappear. It wasn’t as severe and it wasn’t exactly the same but it was horrendous on the same scale for me. The shaking and tremors were present but no-one was sure if that was the illness or the medication. The seizures got worse. I had always had the electrical current but this was something more. I would be rigid and terrified as they gripped me and they seemed to be coupled with compulsions. At my mum’s one night I was overcome with one of the episodes and the only way to cope with it was to pace and pace relentlessly. It seemed to burn some of the energy being generated by the seizures. I walked in circles round and round her cottage and I had a pain in the base of my skull and my neck that was agonising. It’s never going to stop, I remember crying to her. She tried to calm me but I kept pacing. Eventually I lay down and folded a pillow in half. It seemed to ease the pain in my neck and, exhausted, I fell asleep. I slept with a folded pillow for weeks after that.

I had more of these attacks in the hospital. Again I remember one with my mum and we walked the corridors at least twenty times before I settled. We would get up and I would shuffle as fast as I could along the winding warren till we got to a certain point and then we would turn for home, my little room. Once back I would lie on the bed for perhaps a minute or two and then I would be off again. Relentless.

It stays with me how well people responded to my behaviour. It must have looked absolutely insane to anyone on the outside but whether it was Nova, my mum, Nova’s mum, my brother or any of our family and friends no-one ever made me feel like I was mad. On those pacing sessions mum would just quietly walk with me and try to reassure me. I remember in the early days our friend Viv would sometimes look after me. She was always so calm in how she was with me and would accept whatever strange notion I came up with at the time, never making me feel bad. I appreciated this so much from all the people around me. It would have been so easy to panic or get stressed by what I was doing.

There was a new phenomena which appeared at this time. I now know this actually exists but I was having smell seizures. These are a type of seizure where you can smell odours that are not actually present. Mine were of vomit and excrement. Lovely. Needless to say I didn’t particularly enjoy this new delight and it really confused me.

I was very agitated again and had begun to moan out loud a lot and sometimes scream, out of the blue. This happened one evening with my mum and I remember the fear on her face. I really screamed loudly and the nurse came running. Why did you scream, she asked me. I didn’t know why and I couldn’t explain why. The vibration, the endless tension in my body, the rigidness, the constant electrical current pounding through my limbs was why, I had no words for it.

I had become aware of the blue pill they gave me. This was lorazepam. Lorazepam is used for the short-term treatment of anxiety, insomnia, acute seizures including status epilepticus and sedation of hospitalized patients. I started to ask for it myself whenever I would have an episode of agitation or seizure activity. I remember Lucie was once there visiting me and I asked her to get me a blue pill. It was the only medication that I actually wanted or felt I needed in the whole time I was ill.

The doctors told Nova and my family that it seemed likely that I had permanent frontal lobe damage and brain injury rehabilitation was being discussed. I became aware of this on a visit to mum’s. Being the ‘raker’ that I have always been I had a quick scan at some cards she had on her mantel piece. One was from a close friend of hers and talked about me and my frontal lobe damage hopefully not being permanent. I still had no emotional response to anything but I took this information in and it troubled me. I didn’t really understand but I didn’t like it.

In the meantime, Nova was having a debate with the doctors about the anti-psychotic medication I was still on. She wasn’t sure how much of what I was now displaying was the medication and how much the illness. She wanted a window with me off the anti-psychotics to try and get a picture of this but the hospital had other ideas. The brain injury rehabilitation specialist was sent in to see me. He tried hard, this doctor, and spoke to me rather than to my mum, who was in the room too. He talked for quite a long time and I took absolutely none of it in and to be honest, I was tired of doctors and medical talk and being a patient. There was talk of me going into a rehab unit for six months and he also wanted me to be put on anti-depressants for my ‘low’ mood.

Finally Nova won this particular battle and they agreed they wouldn’t try me on anti-depressant and to stop the Haloperidol, the anti-psychotics. Nova’s argument was that, even though I was on a lower dose now, I had been on such huge amounts for such a long time that it would have built up in my system and needed a chance to wash out. The doctors were worried I would lapse back into the insane violent behaviour from before.

For weeks Nova had been coming to see me and tried every time to make me laugh or smile, respond in some way. She would play the clown and make jokes about the consultant or wind up the porters with a bit of banter. She tells me that the moment she saw a glimmer of hope was one day when she said she loved me and I responded with, I love you more. This was something I would have said before the illness took hold of me and it was the first sign that I was in there somewhere. I was becoming a little bit more aware and I remember Nova had brought in our wedding album to show the nurses. It was partly to let them see how I had been before. I got so upset. No-emotion upset but I knew I was nothing like that person any more. I knew I was a skeletal, acne ridden mess. I knew my hair was a disaster and I looked like ***t. I just wanted to be me again.

It was at this time that I was told about my step mum, Gill. She had been in my life since I was 12 and was my friend above all other things. She had been a supporter and a confidante who had seen me through all the major moments of my life to this time. I had spent the Christmas before I fell ill, with my dad, by her hospital bedside as she went through an intensive treatment. Before I became ill we had hope that this had worked and that the next course of treatment would give her and us some more precious time together. I loved her so much. Gill is very ill, I was told, she hasn’t got very long left. I knew I should be feeling something but there was just the nothingness. I can’t describe how hard I tried to feel. I lay in my bed and repeated it to myself over and over. Gill’s dying. It felt like the only way I could make sure I responded. I couldn’t feel nothing or do nothing about this, the only thing to do was to say it in my head and make it real. Make sure it was significant in my brain out of respect and love for her. I just wish I had built the bridge quicker and asked to be taken to see her but the bridge was still missing between my world and everyone else’s.

They took me off the drug and waited to see what would happen.

The most wonderful and most devastating week was upon me.

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.

The return of the fragment

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.

Love, Nova.x’

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?