The start

I was 15, going into 4th year, and it was September so at this point school had been in commencement for about 2 weeks. The first sign of encephalitis, I only realised AFTER the entire ordeal. I was in class and suddenly I felt my body go still – I felt a wave of nausea hit me full force, my hands were shaking and I couldn’t move. I remember thinking “I need to leave, what is happening?” but I couldn’t speak – it was like I had gone catatonic.

It lasted about 30 seconds and left as fast as it came. I never thought about it again. Then about a week later everything changed. I really don’t know what happened in that week but I had gotten incredibly sick, and it was getting worse every single day. I was staying in my Mam’s bed as I was now bedridden and she was taking care of me.

They told me I cried every single day, screaming, moaning etc. I had a migraine Every Single Second Of Every Day and I’m not lying – now when I think of it, that was the infection in my brain. I had never had a migraine in my life. I had been in and out of hospital my whole life but this was nothing like I had experienced before.

So a week and a bit passed and I was out of school at this stage and had no strength or anything. Then one weekend I started feeling a little better and so we thought it was probably a really bad fever or something but I’m better now. We went shopping but had to come home a little while later because I was still a bit off. We were positive though that it would gradually go away after that day.

We couldn’t have been more wrong.

That same night, it got just as bad as it was those few weeks. It wasn’t getting better and I was so scared.

The infection

It was a Tuesday and at this point I hadn’t gotten better at all. My Mam decided it was time to go hospital. We went. I was checked for measles and I didn’t have it. They sent us home the same day. To think that they didn’t think to check or try to figure out what was happening is insane. I was still clearly unwell, and my migraines never left.

To this day, my Mam and I think about it and still shiver at the thought of what could’ve happened if we hadn’t come back the Thursday after. Thursday was probably the worst day of the infection. I had completely lost all energy – I couldn’t walk, speak or sleep. We called an ambulance but I passed out from the moment they came to get me to the time I got to the hospital.

The story

I was put in isolation for about three and a half weeks in the hospital. I don’t remember my first days. I experienced some of the scariest things in my life there. I hallucinated every day for a week. I didn’t know where I was everyday but I woke up every day with deja vu. Because I was in isolation, I was never allowed to leave my room. And when I tell you it drove me crazy, I literally went crazy. There were days where I didn’t sleep and I was sedated to keep me calm and quiet. I cried every night.

There was a day, and I’ll never forget it, but I managed to convince myself that my Mam wasn’t my Mam. I cried into oblivion.

I never really walked, only to the bathroom and back to my bed. I had mild amnesia, or at least that’s what it felt like because I never remembered anything from the day before, every day. It was really hard being so vulnerable.

I was on about nine to 12 pills a day because they didn’t know what was wrong with me. So I was taking medication for a bunch of different diseases, including tuberculosis.

I used to have moments of anger out of nowhere, like kicking in the TV in my room and slamming equipment into the walls. I made myself believe I was never leaving and that was really scary for me. I had actually accepted it and didn’t speak for a while. I gave up. There was a time I just mumbled because I had no control over my body or mind. I was pretty much disabled. There was a time where it was like I had gone catatonic – I would get visits from nurses who would tell me to move my hands or feet, and I would hear them and understand but wouldn’t be able to react for a good while. I conjured up a lot of things that weren’t real and they were really scary.

The healing

So after about three weeks, I had gotten all my memories back, and strength, as well as a bit of my speech. I was healing.

I got moved into a shared room and that was a good sign. I had many MRIs and lumbar punctures. Slowly but surely, my medication went down to a reasonable amount. I was finally getting better.

About a week later, I could finally go home. But that was only the beginning of the journey.

The recovery

Coming home was great. I could stay in my own bed, watch anything I wanted, and also not have to be woken up at 8 am every morning. But I soon realised it wasn’t going to be the same.

I cried every night for two months about things that didn’t exist. I remember my first night, crying before bed and telling my Mam, I wanted to go home… referring to heaven. I wanted to die, I didn’t know why but I just felt different and lost.

I was very blunt because I had no filter, I had become quite sensitive, I could cry on command too. I mumbled a lot as my speech had deteriorated in hospital. I couldn’t read or spell very well. My memory was better though, but that meant I remembered in detail everything that happened. I didn’t go to back to school until December (I came home on the 3rd November), but even then, I wasn’t really in school.

I was supposed to drop out for the year but I insisted on going.

In transition year, you’re not really academic so I wasn’t really missing anything. I went to school for about one hour a day for the rest of the year. It was really hard learning how to be me again.

I was a very scrawny kid growing up but I was put on steroids as a result of the infection, and gained a ton of weight as you can imagine.

Becoming 16 in a new body and mind was some of the scariest things I had gone through. I had to find myself again and that was really stressful.

As a result of the experience, my mental health opened up to a new world.  Before this, I had never experienced massive anxiety or had anxiety and panic attacks or depression – all of which I got after.

It was really hard, and after years of therapy (before and after hospital), I had dealt with a lot. My experience with encephalitis is something I really want to talk about because writing it is only a small portion of what I went through as well as the people around me.

My Mam stayed with me every single night (except the last week when I was in hospital when I had healed really well), despite the fact that she had two kids at home who were also distraught, and needing their mother (my older sisters).

She was my safety blanket and someone I will love for the rest of my life. Without my amazing friends and family, I wouldn’t have been able to get through it. There’s still a lot I want to talk about but these were the things I remember as turning points.

I didn’t even find out I had encephalitis until I got on Google and looked it up. Because I was a minor, I didn’t know much. Eventually they did mention it.

It’s so poorly recognised that even the doctors in the ER sent me home because if it wasn’t measles then it wasn’t that bad.

More research and awareness needs to go into this – the fact that it can happen to anyone should be enough to tell you it’s important.

I just wanted to share my thanks to Encephalitis International, it’s so nice to see so many stories being shared and light being focused on the infection that is so unknown and hidden.

I hope my story is one of many to allow people to understand what we’ve all gone through.

Update August 2024: A little update on me: I’m 19 now, going into my second year of college/university – which I didn’t think would happen as I had to get used to reading and writing again. I’ve become more spiritual and a lot more understanding of mental illnesses as a result. I want to help people and spread awareness about encephalitis – much more than in this post. It was a blessing in disguise in my opinion. I’m no longer on steroids and I’ve grown to love my body for what it’s changed into. I’m happy and grateful to be alive.