My involvement with World Encephalitis Day (2020)

Today marks my fourth World Encephalitis Day since being diagnosed with anti Ndma receptor autoimmune encephalitis.

The first, in 2017, to be quite honest I was probably asleep for – recovering from an acquired brain injury is the most strenuous journey you will ever take, and there is no quick way of bouncing back to the person you were before.

For several months after leaving the hospital, the inside of my head was like the static on a tv and I was desperate to turn it off. Being awake was exhausting and my body was no longer my own, I had no clue who I was anymore and if I would ever exist in some sort of normality ever again.

Later that year, I would realise that I had become permanently disabled and my life would change once again.

The second, in 2018, I had just posted my first ever blog about my experiences with encephalitis after being terrified to touch my laptop out of fear or not knowing how to use it – it was here that I met so many amazing people who had also experienced the disease, through various groups and online forums.

My sister, Hannah, encouraged me to keep writing, promising me that one day the things I once knew would come back to me. Using her graphic design talents, she created ‘Lucy in the Sky with Encephalitis.’

This year, my best friend, Brad, also became my social carer, as I had become so detached and overwhelmed by the outside world, and so deeply isolated from reality, stuck only with the confusion and despair in my own head, that I would never leave the house other than for the hundreds of hospital appointments which I faced each week.

Brad helped me to be less afraid of the world. At first I couldn’t stand the noises and all the people around, but with him with me for support, it was like having a third crutch.

By World Encephalitis Day 2019, I had somehow managed to return to university. I was living by myself and it was all I could ever have dreamed of the two years previously… except it wasn’t a dream at all. Returning to uni was countless days spent sobbing into my pillow, wishing that I had stayed in the safe confines of my parents house. Every day I had to face up to the fact that I simply did not know the things that I knew before, and having to admit to myself, ‘Lucy, you’re just not as clever as you used to be. ‘

I struggled to make a single friend as everyone was younger than me and had already formed bonds, and it’s so difficult when youre clearly different to everybody else.

Thankfully, my lecturers would sit for hours at a time, whilst I had break down after break down, and talk me through the chaos.

Although most days my brain wouldn’t function, and words on pages swam around and made me dizzy, somehow, I went on to graduate with a 2:1 in July.

And that brings me to today, Saturday 22nd February 2020, and for the first time, I think I am okay. Dont get me wrong, I still have my moments where I wonder ‘why me?’, and I’m sure along the way I will have many more tears to cry over what has happened – but I’m okay. Although there were numerous times that I told my mum that I wished I had just died on that hospital bed, I am truly so thankful that I didn’t. I now have the most perfect niece, Arya, whose smile makes my heart burst with warmth. My family have supported me through everything and we have all become closer because of the ordeal.

My friendship group has shrunk significantly but the ones who stuck around, Brad, Bex, Becs, Lucy H and Laura will be in my life forever and a situation like this definitely reminds you that it is always quality over quantity.

Overall, I am now at the point where I will no longer spend World Encephalitis Day’s feeling sorry for myself, instead, I will use this day (and all my days), working to raise awareness of Encephalitis, to help stop the level of misdiagnosis and to save lives.