Loving my illness

Recently I have been umming and ahhhing as to how much of my life I should divulge. It is easy to tell people about my life when it is filled with joyous occasions and positive steps in the right direction. However, it is not so easy to describe the negative aspects, whilst trying to stay positive the whole time.

Last night I watched a documentary about a young lady, Charlie Elmore, that is living with a traumatic brain injury after having a snowboarding accident back in 2011. The documentary followed her journey down memory lane as she tried to piece together what had happened to her, and talk about the effects that she has to live with each and every day. There were other young people that had also suffered traumatic brain injuries, with interesting views on the impact a brain injury can have. I am almost certain that anyone that has suffered something even slightly similar will have found the programme somewhat harrowing.

There have been a few interesting write ups about the documentary which you may like to take a look at:

For me, it was not so much watching her relive her illness by visiting the intensive care ward and meeting the people that helped her in her recovery. For me, it was something that she said that I found difficult to get my head around.

“Today I am who I am. I love every effect that this accident has had on me…every effect”.


Charlie Elmore





How is it possible for someone to love every effect that a brain injury has had on them? In my household the effects are something that we commonly hate. Yes, there have been some positive aspects to come out of the terrible situation, but for the most part, these are insignificant in the scheme of things.

Yesterday, as I was lying on an uncomfortable mattress in hospital, with a cannula sticking awkwardly out of my arm, I could not bring myself to love every effect that my illness has had on me.


Perhaps the main difference is this. When you have suffered from a traumatic brain injury and survived, the worst is over once you leave the hospital. Yes, you have to relearn how to walk and talk and it is not until much later on in your recovery that your emotional recovery catches up, but every part of your recovery is going in the right direction. When you suffer from anti-NMDA-r encephalitis this is not the case. You may feel that everything is starting to come together and then, all of a sudden, out of the blue, your health will start deteriorating again and you are forced back to that feeling of being ‘ill’; again.

In my opinion, there is nothing worse than having to listen to someone complain about all the parts of their life they are not happy with, in particular when they are not doing anything to make their life better. I would hate to be one of those people, but sometimes I just cannot help myself.

Having encephalitis is not something that I would wish on anyone. I do not love every effect that the illness has had on me. But as said in the documentary, today I am who I am; and I would not change that for the world.


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