Encephalitis and Me - My speech

I'm posting this here as I know that a few people have asked me to share what I spoke about. The reality is, it was filmed and will, at some point, be online (and I will share it here too) but just in case you fancy a read of what I talked about, here it is:

"It’s strange to be standing here today talking. Strange because it’s almost 2 years to the day that I became poorly with encephalitis.  I’m a teacher and It was half term. As a family we’d planned to go and see a children’s ballet with our daughter, India, in Leeds, and had decided to stay in Harrogate. I was exhausted as the September/October half term always makes me feel, and so when we travelled up to Harrogate, I was tired and felt like I was coming down with the flu. As the day went on, I felt more exhausted and ‘fluey’ to the point that we arranged an emergency appointment with a GP in Harrogate who was pretty convinced it was nothing more than the flu but that I needed lots of rest. So, instead of staying, we decided to drive home so that I could sleep in my own bed and not worry about the ballet in the morning. The following morning my husband, Paul, took me to my own GP whose words were “I think you are my first ‘real’ flu case of the year” – so I went home with paracetamol and an order of rest. 

The following 24 hours I barely remember. I vaguely recall going to a car garage just outside of Nottingham, but it’s all jumbled up in my head, and then the next 24 hours becomes a blur. Apparently I was making little sense – talking ‘gobbledegook’ and not being at all logical with my speech. I vaguely remember trying to explain things and what I said had no relevance to what I was thinking. I do remember the GP telling Paul that there wasn’t anything that they could do and to take me to the hospital, but beyond that point, I don’t remember a lot: A *very* busy A & E; lots of beds; closing my eyes a lot as my head hurt as much as it did when I’d had meningitis the year before. (The doctors wondered if it was meningitis, but that would have been sheer bad luck, given that I’d already had it once.) But they, apparently, did all the tests/ECGs/lumbar punctures etc. to see what was going on. Apart from fragments of all of that, I don’t really recall much else. I know that I ended up on one ward, then was transferred to another. I didn’t know what was wrong with me and I think I slept more than I was awake. They treated me for meningitis with the drug Aciclovir – which was fortunate because when my lumbar puncture results came back they showed that I had acute herpes simplex encephalitis – and the treatment is the same. I have vague recollections of the first week, then I have more vivid recollections of the second week in hospital; I remember a group of doctors standing around me and talking in a foreign (medical speak) language, and me not really knowing what was going on – not even really what the matter was with me. I just either slept or ‘pretended’ that I was fine, even though I couldn’t find the words for things when they asked me questions (to establish where I was in terms of cognition and whether I had any significant brain damage.)

I can’t narrate the rest of that stay. It was emotional in some ways, I just wanted to be at home with India, but I was also so ill in that they wouldn’t let me come home when I petitioned them to let me go. Nearly a month later, and when they’d finished the extended course of Acyclovir; I was released. It felt unreal. My friend Isla picked me up from the hospital and drove me home at 9pm so that Paul didn’t have to bring India with him to do the same job. As for the next few weeks – I was adamant that I was ok, that I wanted to go back to work ASAP; I didn’t really have any sense of what encephalitis was, or how it had affected me – I just knew I had to keep going and I needed to get back to work. Paul, on the other hand, had other ideas. He’d looked online and researched encephalitis; he knew the effects it could have and the high mortality rate of the illness and I know now that he was terrified. Meanwhile, I just felt like I was letting everyone down. India, Paul, School, My family. I had no real concept of what I’d been through, or the lasting impact it was going to have on me.

Those immediate months after being in hospital were not straight forward. Whilst I wanted to be ‘normal’. I suffered from daily, mini, intense migraines – sometimes 3 times a day, and there was a question mark over whether these were epileptic micro-seizures. As a result I’d been given a treatment drug for epilepsy that has known capacity for causing low mood – definitely not what I needed.  Fortunately, and in retrospect, these migraines were just that: migraines. And my brain recovering from the damage it had suffered with the encephalitis. Fortunately, I rarely get migraines anymore and I haven’t taken the anti-epileptic medication for well over a year now – a more recent EEG scan showed no visible signs of epilepsy, thankfully. 

Other noticeable after-effects that I found really frustrating were ‘losing track’ of what I was saying mid-sentence. Almost like my brain had been wiped and I had no sense of where I came from and where I was heading with what I was saying. Perhaps particularly frustrating for someone whose ‘strength with words’ has always been a key part of my identity. And, on top of all this: an overwhelming fatigue. Don’t get me wrong, I’ve always needed a ‘good night’s sleep’ – but I suddenly needed naps in the day and early nights (bed by 9 every night) and to some extent this is something I’m still battling to this day.

3 months after my discharge from Queens Medical Centre and the intense HSV treatment that I’d had; I saw a private specialist via Paul’s work health insurance (I cannot fault the NHS, but I think encephalitis is so uncommon they didn’t really know which path to take, and so there was a lot of shuffling going on) – and I think for the first time it hit me how severely unwell I’d been. The doctor I saw was, strangely, the father of a little girl I had taught, so we’d met before – which was a bit strange realising that he could see my medical history and everything that entailed – fortunately he was incredibly professional and empathic too, which was a relief. He ordered a brain scan, which showed significant brain damage as a result of the infection, and I think this marked the beginning of a real downward spiral – I felt broken, lost and pointless and I don’t think I’ve ever felt so low in my life. I felt like a shadow of who I had been. I felt (and still feel this) that I had lost the one thing that was unwavering in my past; my intelligence. I couldn’t communicate with anyone about how I was feeling and this just came out as self-hatred and general negativity towards life. When I tried, and failed, to go back to work after Easter 2018, I was in the lowest point in my life. I had to keep on being a mummy, but apart from that I was a complete failure and felt totally broken.

It's hard, because I wanted this talk to be positive, but I also feel that I need to be honest about what I’ve been through. Encephalitis has knocked me for six, and there isn’t a day go by where I don’t actively notice the impact it’s had on me. My undergraduate degree was in English from Cambridge University – and never have I said this as many times as I have done since the encephalitis. I never used to ‘brag’ about this academic achievement, and so, as a primary teacher, few people knew this about me until the last couple of years – but now I say it more frequently than I’ve ever said it; to prove that I was, once, clever.  Post encephalitis, as a primary school teacher, there have been numerous hurdles to overcome. And the biggest one; the one that trips me up every day, is learning names. Once upon a time I could learn 32 names in little over 24 hours – I felt that it was important to be able to recognise the children in my class and talk to them like they matter. Fast forward to post-encephalitis, and this is something that I find incredibly difficult. 30 children in front of me and my short-term memory struggles to recall their names from one minute to the next. One minute I will know it; the next it’s gone. I find it so frustrating.

But. And here’s the ‘but’. I’m finding ways to cope. I have steadily realised that my visual memory is better than my auditory memory and so I’m using this. In my classroom, on a door opposite my desk, and behind where I teach them on the carpet, I have pictures of all of the children in the class. They are pictures that I took, which feels like it’s important, as I created the images. Under their pictures are their names; large enough that I can read them easily. Somehow this is helping enormously. Not because I constantly have to check ‘who is who’ but because SEEING their names next to their pictures becomes an image that I can see in my head even when I can’t see the board. For example; a little boy in my class called George; his picture is of him smiling ‘cheekily’ but every time I forget his name (which happens all the time) I can visualise in my head that photo and his name written under it and all of a sudden I know it again. Having been back at work for nearly a year now, this is a ‘new learning’ for me, but it’s a positive and one that I’m pretty pleased with myself about.

Even this is not without its challenges. I can’t tell you how many five-year olds have giggled at me over the last half term because when we were reading Snow White and retelling the story, I kept calling Snow White Goldilocks or Cinderella or another name from another fairy tale. The children couldn’t see into my mixed-up brain whereas I could practically feel these nouns swimming around in there! But children are remarkable. They laugh at me, but in a nice way, and this makes it feel alright. It’s not without its struggles, but I feel like I’m getting there. 

The encephalitis society have been amazing for us as a family.  In that first period post illness, they were there on the phone whenever we needed it and have sent us some invaluable information that has really helped. Unfortunately, they can’t cure the lasting (and fairly significant) damage to my brain, but it has helped enormously to know there are other people out there going through the same thing.  

Encephalitis has rocked my world. It’s rocked my family’s world. I’m not the same person I was before I had it and that hasn’t been easy to adjust to. My family have been amazing, but it hasn’t been without its complications. My daughter was only 2 when it happened. Now she’s just turned 4. There are things that I struggle with: remembering what nursery tell me she’s done that day; remembering what she’s just done and explaining this – short term memory can be an issue. Encephalitis has challenged us as a family – at points post encephalitis I was so low that I couldn’t see a future, and the frustration that I felt often made itself felt in conflicts with my husband, Paul. It has challenged *us* to the edge of what we can cope with, but I feel like we’re getting there. I won’t ever forgive encephalitis for damaging my brain, my self-esteem or the impact that this had on our family dynamic. Paul became a ‘carer’ and our balance was thrown off-kilter. I can say all this now, and I haven’t really talked about it openly, but we – as a married couple – have been to the edge. Fortunately, I can add ‘and back again’ to that – but not without focused ‘repair’. We’ve been incredibly lucky to be able to see an amazing counsellor through ‘Relate’ who gets us, she really does. She can see how the imbalance in our relationship has been created by not just encephalitis but other things too and she challenges us to adjust our expectations, relations and outcomes as a result. I don’t think *we* would be here, at this conference today if it weren’t for her insight and compassion. She’s brought us back from breaking point; a breaking point that was at least partly caused by encephalitis. Because Paul has been there for me throughout, but the imbalance at times has been difficult to adjust to – Paul, at times, has been the carer, and me the cared for. And whilst I appreciate this, it’s also not easy to accept, and has left me feeling powerless at times. But. And I repeat this. We have come a long way. We have worked hard together with some amazing support from Jasmine, our counsellor, amongst others. We are more of a team now; a balanced team. The encephalitis has not and will not destroy our relationship or our family, but it’s not been easy.

I wanted to come here today and talk about it. Encephalitis. Answer questions. Try to be positive. But it’s massive. There are good days and bad days. There are longer term implications of acquired brain injury and the exhaustion that I’m left with, but I’m getting through and that’s a got to be something."