Life after encephalitis 

Pretty much as soon as I started sharing my story with the world, I became inundated with people messaging me for advice. The queries could vary from something along the lines of “how long did it take you to ‘get better’?” to something more open ended such as “how has encephalitis affected you?”.

Throughout my journey through recovery, I truly believe that by being able to share my knowledge of my own personal story has enabled me to gain a better understanding into my own illness.

From an early stage I was told about the recovery process. If recovery was to be represented in a graph it would start with a very rapid increase, which after about six months started to level off. I was always aware (well as soon as I was recovered enough to be aware) that I would make the most progress in the first half of the year, and then after that, progress would come to something of a standstill.

This was the advice that I would relay to those people that were coming to me, seeking answers. It was what I truly believed would happen, and what I thought had, until recently.
If someone was to ask me now, what it is like to recover from encephalitis, my answer would have changed.

Although I would still agree that most of the ‘physical’ progress is made in the first six months, what I believe to be the more important progress was made in the years to come.
When I awoke from my coma it was like starting all over again with a blank canvas. I had to learn to talk, to walk, to write and read. My brain was bombarded with all these new processes, my brain had no time to think about emotions or personality.
I was a shell of a person, with my key objectives wholly physical.

It was not until a few months after leaving rehab that I started to even comprehend reading other people’s emotions. For many months the only two emotions I could read in a face would be ‘happy’ and ‘angry’. Even to this day, my ability to understand a person’s emotions is somewhat faltered, but it is something I am working on and hoping to change.

Over the last five years my recovery has astounded me. I can still remember a time where I truly believed that I would be living in Devon for the rest of my life, unable to work, unable to form relationships, unable to live a life. Whilst you are living through this time it is hard to imagine how you can ever have enough energy to not need to nap most of the day, how you will ever have the confidence to meet anyone new or how you will ever learn how to be in a noisy, hectic environment and it not turn into a meltdown.

But looking back over these past few years, my graph has changed.

There have been spikes where I have achieved more than I ever dreamed would be possible, such as running a marathon, doing a ski season or working a 50hour weeks. Then there has been slumps, where I have relapsed, depression has taken over, or I have retracted to a child-like state once more.

So I suppose really my graph would be more of a wavy line, slowly edging upwards, closing in on the outcome I so desperately want.

And then Ben Archer came along.

And my graph rocketed.

The line soared like never before.

I will never be able to say if he came along and filled me with confidence or if it was because I had finally found my inner confidence which made him come along. But whatever the reason, meeting Ben has been the best thing to ever happen for my recovery. The best thing to ever happen for me.

When you have suffered from a brain injury you are always worrying about what other people think of you. You’re different to other people. People can’t understand.

No one understands.

But when I met Ben, none of this mattered anymore. Ben loves me for who I am post-encephalitis. Ben didn’t know who I was before, he doesn’t know the person I was striving to be, and yet he still loves me.

Being of part of something so special has made me realise that there is life after encephalitis.
My recovery has been a long one and although I may not be back to the person I was before, having someone to plan a future with is so much more important than spending everyday reminiscing about the past.

So next time someone asks me how long it took me to ‘get better’ I will tell them that it is a long slow process but thanks to my Ben I am nearly there.

6 thoughts on “Life after encephalitis 

  1. Hello,My father is suffering from encephalitis. It has been two months. He is not able to understand what we are speaking to him.He has started showing little movements of hands and legs. I am very worried about his recovery.

    • Hello Sonia. I’m so sorry to hear about your father. I hope you are still finding he is improving now. Keep strong for him and you never know, he may able to understand just unable to respond yet. Talking to your loved ones about just general life is important at this time. I still remember things people told me when I was completely unresponsive. You and your family are in my thoughts x

  2. I am an encephalitis survivor myself unfortunately I don’t remember a thing of who I used to be given that I was only 2 years old at the time when I became infected. I am still struggling to find myself and deal with the social environment and constant mood swings and none of it makes sense…I have read survivors have changed their life for the better but I don’t know where to go from here at age 17. Your personal narrative amazes me however. You all make it look so easy.

    • Hi Jessilyn. Believe me, life isn’t easy. I use this blog as a way of trying to show the positives so that when people feel down they have some hope. I’m so sorry to hear that you are struggling, just try to take every day as it comes and remember that it is ok to not feel amazing all the time. Life is full of struggles and the fact that you have insight into your problems can only be a positive. Wishing you all the luck in the world x

  3. My husband is currently battling encephalitis. He’s able to walk, talk, read, and even watch tv for short bursts of time. But he doesn’t always know I’m his wife. He sometimes thinks it’s 1997. I’m hopeful that he will recover soon but I’m sad and I miss my partner and friend. Thank you for sharing your story with me. It’s my hope that my husband will be strong like you are.

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