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28 Aug 2010

Post 234: My new brain

I wish I had something new, exciting and positive to talk about but if you've been paying any attention (and who am I to tell anyone to pay attention?!) the chances of those three things happening on the same day are as remote as the Hubble Telescope has of finding god. When I started this long journey I never asked to go on, my emphasis was on recovering so having this stroke would have been nothing more than a blip on a more or less ok life, like a broken arm that temporarily inconveniences you but you recover from. And this is what I said to my therapists in the Frank Cooksey rehab unit in 2006, and none of them said 'you're having a laugh Dom, your life is completely ruined forever, you're unlikely to ever walk or feel normal ever again!' In a way, I'm glad they didn't because some form of suicide would have been very tempting not that it solves anything. There was a time when I didn't want different treatment to anyone able-bodied but this was bravado, I now judge people on how well they seem to understand (or try to understand) what I'm going through. My #1 goal is to try and feel normal again, that is to not feel tired and no-one seems to have a clue how to do this so I approach all tiring activities with some antipathy while at the same time realising that I have to do some things to have some quality of life. Physical therapy is backbreaking and I approach most sessions with the sort of foreboding a 40 a day smoker would feel about a visit to the gym!
I have just watched a documentary I recorded off Channel 4 called 'my new Brain' about a 21 year old lad called Simon who fell off a wall. His experience exactly mirrors mine except all of his deficits are cognitive, he can no longer think properly or hold onto a thought properly. In his injury he lost the thinking/analytical part of his brain but he is absolutely certain he is not the same person he was before his accident, I share the same sense of loss -whereas his mum says it is like 'having a 4 year old around again' in a way I am glad that although my stroke has knocked me sideways in terms of depression and energy I'm mentally the same guy, my voice and face have changed a bit but the big difference is I no longer have the energy to do most things and my voice and face are somewhat affected. So in a strange kind of way, I am able to be the same as I was but in the same way it kind of smashed home the point that I need to let go of any hope that I might be able to get back to my old self, something I have probably repeatedly tried to do, but I don't think I've ever quite succeeded in doing. It's difficult when so much of my personality was because of my physical being, I was a confident guy who could do most things I set my mind to so even though this bloke (Simon) could walk around and go where he wanted including being able to go home, he didn't always know why he wanted to but like me, he really hated rehab, not because of the people, who actually make it bearable but because of almost feeling like you were back at school again and being treated like a kid again, with none of your time being your own. What it did tell me was that no matter what form your injury takes it's normal to be thoroughly dissatisfied with your post brain injury self.

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