My encephalitis journey: coping with a re-designed mind
In December 2014, my life was going as expected. I had completed an MBA at the age of 40 in 2010, and was working as a senior manager in a large organisation. I had a beautiful fiancée and was looking forward to an incredible future – life was going well.
However, the latest role at work I had was difficult and I was failing to hit targets in a new and very challenging environment. I was finding it hard to focus and getting tired. At the time, I thought it was stress, something I’d never experienced at work before and not something I wanted to think about. As a 43-year-old man who had usually found work easy, I kept quiet and thought by working more hours things would improve.
By early January, a couple of people at work had asked if I was ok, they thought I was behaving differently; I had missed a couple of meetings and things were getting very strange. I would arrive at work and sometimes whole sections of the day would be blanked out in my mind, it was as though I’d completely shut down for hours although I’d be at my desk appearing to work.
I started to think I was getting flu although I hadn’t had it before so didn’t really know what it was. I was feeling hot and was getting headaches and stomach aches. I remember one night talking to myself in my head and asking myself was there something seriously wrong with me? This was not normal, was I going a bit crazy? Better not talk to anyone about this. I wasn’t a hypochondriac…
I knew I couldn’t stay at work, I wasn’t feeling well and thought driving to work feeling like this would be dangerous. I called work and said I was having problems with my diabetes. I’d had diabetes since I was 10, and my blood tests were all over the place. I went to the doctor and was diagnosed as having a chest infection. I wasn’t sure about that as I hadn’t got a cough and hadn’t smoked for a few years but I took the tablets. The doctors do the best they can but what chance do they have to diagnose something like encephalitis in 10 minutes with no tests!
My fiancée was getting really concerned, and based on what was happening at home this was understandable. I was getting up in the morning wearing inappropriate clothing and becoming very strange. I was telling her things that didn’t make sense – she got in from work one day and I was in the bath. She asked how I’d been and I calmly explained how the man next door had just been in the bathroom to talk about his water bill and how I had sorted it out: ‘What, while you were in the bath?!’. In my head this had happened.
I also had a weekend where I thought my brothers had visited and we had had a buffet – they both denied coming and I couldn’t understand why they would lie. These memories were ‘absolute’ in my mind and I thought there was some sort of conspiracy taking place against me. I really didn’t understand what was going on.
Another visit to the doctor, and more antibiotics for my chest infection. This time a student was sitting in with the doctor, and he said he thought I should be checked for encephalitis. I’d never heard of this before and wasn’t concerned. We left the doctor with the prescription, and the next day my fiancée called an ambulance as she was by now getting very worried.
At the hospital, I was given a CT and MRI scan. I’ll never forget the doctor giving me the results: ‘We need to get you admitted, the results show abnormalities that could be a number of things. It could be a brain tumour, brain cancer, meningitis or encephalitis’.
Now none of these things sounded good. Thankfully, the actions of my fiancée meant I was admitted, given a lumbar puncture and had encephalitis diagnosed and treated quickly. I had herpes simplex virus (HSV) encephalitis and was given acyclovir. It I had waited much longer, things could have been so much worse.
I was in hospital for about a month, and spent a good 18 hours of each day asleep. It was a very scary experience, I don’t remember large chunks – my brain was almost in hibernation. I could remember things that had happened 20-30 years before with real clarity but hadn’t got a clue what I’d had for breakfast. The crazy stories kept on coming. I’d told my fiancée that a lady who used to work in our old office in the North East was now working as a porter in the hospital in Cambridgeshire, and I would get really angry if anyone dared to question anything I said. The confident, capable manager seemed to be gone, and a child was learning to cope with basic things like going to the toilet and shaving. Performing more than two of these types of task would mean I’d be physically exhausted. You need so much support with this condition, both from the medical professionals who do an incredible job but more so from those close to you. Luckily my fiancée was there for 12 hours a day
every day when I wasn’t able to do anything for myself, and that quiet, calm love and presence made such a difference to me.
In early February, I was released from hospital and left to recover. The neuropsychologist had been great and put me through tough tests to see how I was coping after the medication had done its job. I absolutely loved the tests. There were five tests involving memory questions like naming American presidents from the present time and working backwards. I scored very highly here as I have an academic mind and facts and figures seem to not bother me at all – I went back to Jimmy Carter no problem at all. There were some trick questions like what I’d had for breakfast – after the first two tests, I realised that if I had toast every day this was a point I’d not lose again!
What was missing for me were questions about how I was feeling – not what I could remember. If I had seen a counsellor at that point I would have completely broken down. I was petrified – would I ever go back to work, would I be able to live anything like a normal life, would my fiancée want to be a carer rather than a partner if things didn’t get better?
Work were very understanding. I got full pay for 6 months and didn’t go back to work until July, seven months after being off for the first time. They gave me one simple project but within 2 weeks I realised I couldn’t cope with it and needed a longer rest. After 17 years, I knew I needed to leave and look after myself. I was offered a settlement to leave the company which allowed us to return to the North East where we are so happy.
In the following 18 months, I didn’t do paid work. I did voluntary work for Christian Aid, at a Forces Support charity shop and as a food preparation assistant in a church cafe. This wasn’t what I expected I’d be doing a year earlier but it gave me a huge amount of confidence. For the first time, I started to realise that whilst I had come through things physically, I was a very different person mentally. It was as if my mind had been re-wired, and this takes a long time to accept and adapt to.
I was much more difficult to live with I’m sure. If anyone questioned anything about me, I would get angry and frustrated. Little things like ‘Don’t shout at me’ would cause me to lose my head – certainly if I wasn’t shouting before I would be now. I was behaving like a child and would then sit and think about what a failure I was. Questioning things I believed had happened was another difficult thing to accept. My brain was giving me such clear memories of things that had happened – why would people question me? What right do people have to question me when I am so certain I am right – even when on reflection I knew these things were not possible. My brain was damaged and under a huge amount of pressure. It was trying to help me but emotionally I couldn’t deal with things.
Whilst I had lost the ability to control my temper in the same way I could before, I found myself with a really heightened sense of empathy. I got very emotional when watching the news or reading about bad things that had happened, and also became obsessive about projects that I felt were important. First there was an allotment I was given. I’d spend hours there, and started dressing and looking like a scarecrow! Nothing mattered to me as much as getting the allotment sorted, and the level of focus on the physical tasks there helped my brain cope with the things it seemed it couldn’t do at the moment. The sense of wanting to help people certainly pushed me towards the voluntary work I was doing.
2016 was a much better year and things were getting better. My short-term memory was improving, and in December we got married. My wife had never left my side throughout what was a nightmare couple of years, and she has been the one thing that kept me believing things would be okay. I know how important this level of love and support is to people coping with the challenge of encephalitis. When you go through something so difficult and serious, it’s probably easier for the person with the condition than for partners and family members. I retreated into myself, focusing on simple easy things whilst my wife was left with caring and managing everything on her own. I hope I can repay her faith and love over the rest of my life.
In 2017, I started work again for the first time as a magistrates court usher. I absolutely loved this job. I set up courts and spent my day making sure defendants, witnesses and other court users were okay, and I met some real characters, many of whom had been through much more than me over the course of sometimes very difficult lives. This suited my need to empathise with people and try and help them. After 15 months, I was given the chance to work as a police station representative, giving legal advice to people who had been arrested. Leaving the court was difficult, but the chance of earning more money and getting back some status was too alluring to turn down.
I find dealing with people a real strength now, and started a course to become an accredited police station representative working with a defence solicitor firm. I threw myself in to the course and the legal training with the obsessive personality I now have. I now understand I wasn’t ready for this level of challenge though. My mind copes so easily with words and my memory is better than ever but my ability to use some IT systems and follow processes is not what it was.
The biggest challenge for me is accepting I am not who I was, I am a completely different person. I care more, I get emotional, I have a profound sense of injustice and a level of focus that may be useful. I will never be the person I was. I won’t be able to work at the same level or earn the same income. I do voluntary work with Age UK, visiting elderly people who are lonely, as well as paid administrative work for a bank.
Accepting who you are, learning that you still have value, accepting you need help and going to the right places to get it are all things I’m still working on. I was very lucky to have got through encephalitis without serious long-term issues. I was even more lucky to be supported by a wonderful strong woman who never stopped loving me.
There will be challenges ahead, but I am confident I can meet them with the love of my wife and support: Encephalitis International do so much great work and if anyone needs any advice they can provide it or know where it is available.