I went to see my consultant last week and got asked the same question she asks me every time; ‘in terms of percentages, how far would you say you have recovered?’
Now, my answer seems to vary from day to day. The difficulty is, that it is impossible to make a full recovery from a brain injury. You will never be exactly the same as before. Today, as I write this, I would say I am around the 70% mark. I can do much of what I could before, but there are certain aspects of my being that are nowhere near where I would want them to be.
I think it is fair to say that encephalitis takes everything from you. The Encephalitis Society calls encephalitis a ‘thief’. Not only do you have to relearn how to walk and talk, but you also have to relearn how to understand people’s emotions, and come to terms with the changes in your life. You lose friends, you lose relationships, and you lose yourself.
Before my encephalitis I was happy. I had everything that I could ever want in life. I had a doting boyfriend, I had finished my degree, and I was hopeful for whatever the future may bring. Now, it appears that I have nothing.
I want to look forward to the future, but I am constantly worrying about having a relapse. I want to have a relationship, but I lack the self-confidence to meet someone new. I want to find my purpose in life, but I struggle to find the motivation to get started.
After spending a weekend with other encephalitis sufferers it appears that I am not alone in this thought process. Whilst we are all thankful to be here today, living life and enjoying what each day brings, there is a part of us that thinks “why me?”
It is easy for me to tell you about all the positives that have come from my encephalitis. I have achieved many goals that I never would have thought possible, running a marathon, jumping out of a plane and even becoming a more rounded and understanding human being. It has brought my family together, in a way I never knew was possible.
But, what I find difficult to grasp is that I will never be who I was before.
Life will never be the same again.
In some respects, perhaps this is for the best. Whilst encephalitis has stolen some of the best parts of life, it took some of the worst with it too. Perhaps it is time for me to stop thinking that the grass is greener pre-encephalitis and to live life in the now, here, today.
I suppose in some ways it is like any robbery. Although you can never recover what has been stolen, you can start to rebuild your life from scratch. And while it may cause grief, it can bring you together against the thief, to help you form stronger relationships and help you realise what is truly important, and for me, that is what recovery is all about.
Me at 70% recovery
My Broken Brain 
Hi Liz, Thanks for writing your blog. I am reading it with some interest and it is beautifully written so kudos on that. I find your blog fascinating as I was the victim of an Acquired Brain Injury which has left me as a totally different person I was before. So it is interesting to read something from a 1st person POV that I can relate to in terms of the changes that you have gone through. I live in Dorset as well so not to far from you. I was wondering if you will respond as I am hoping to learn all I can about blogging and journalism. I am trying to become a freelance writer as a career to counter some of the obstacles my Brain Injury left me with. Below is the link to my blog. I hope you get back to me but if not keep up the good work because stories like ours need to be told and people need to be more aware of the discourse pertaining to Brain Injury/illness. Thanks again, love the blog! Tom Massey
https://lifeafterabraininjurydotorg.wordpress.com
Hi Tom. Thank you so much for getting in touch. The main reason I write my blog is so that other people can relate to something I say so it’s great to hear that you feel like that’s the case for you. I am going to take a look at your blog now, but feel free to add me on Facebook (Liz Molly Oldershaw) and we can chat through there. I’m so sorry to hear you too have an ABI, how are you doing? All the best, Liz
Hi Liz,
I have sent you a msg on Facebook but for some reason couldn’t find an option to add you. So I did send a msg on there somewhere haha. Would be great if we could maybe swap some knowledge/experiences etc. Be great to hear from you.
Regards,
Tom
I think this is probably your best post to date.
I think asking someone who has had Encephalitis what percentage recovery have you achieved is daft. Daft. If you don’t know the end point how on earth can you assess your progress towards it? And have I ever pointed this out to a consultant. Yes. At that point he gave up asking me! We agreed that my awareness that I don’t have a single point in mind as full recovery was healthy.
Personally I think a better question is how much of the recovery you have made do you think is sustainable? I can often manage to stretch myself on a temporary basis but that doesn’t mean I hit that point regularly. My confidence increased the more certainty that I had in my base position. This position shifted upwards sometimes in a leap sometimes in an itsy-bitsy crawl on a minimal gradient. Establishing that I could reliably and consistently hit 75% of the potential I experienced left me flexibility to stretch myself and if I had a bad day or days so be it. Over time as my coping strategies improved and I learned to maximise what I had this potential increased and so, therefore, did my 75% Do you think this may be a more useful way of explaining your progress, Liz?
As for working out Who Am I now versus Who I Thought I Would Be By Now that’s a tricky one. There must be a cocktail recipe somewhere for it – One Measure of Pre E Ability, Two Measures of Pre E Values, Three Measures of A New Door Opened and a Generous Splash of Determination with a Hint of Bitter Lemon aka Grass is Greener for the Sharpness.
As I say Liz really good post.
I suffered a TBI last year and receive similar feedback. Please check my blog out and see if you notice any similarities please. Thank you!
Hello. I will try to check out your blog when I get a chance, thank you for taking the time to read mine. The more awareness about brain injury the better!