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 ❤