Hey Tim,
“This is going off track…” A little maybe, but I think the sharing of experiences on this neuro journey is paramount. If something touches a chord with you, then you comment. Fortunately, not everybody travels this route, unfortunately, we do and it can be EXTREMELY isolating. Prior to me finding Ben’s Friends I thought I was one of the only people having these oddball symptoms post neurosurgery. The dr’s were making it all sound like it was just me. I really was questioning my own sanity. I went looking for answers and found these people saying ‘Yea, me too’. I cannot tell you how much of a ‘phew’ moment that was for me “So I’m not the only one”.
Ohh yea. I get that too ‘But, You look OK…’. As I often tell others ‘You want to have a look from this side’ what they can see is a micron of what I’m dealing with. I have these ‘Masks’. I can put on a happy mask most of the time and can get through a day. When people see me looking like hell what I’m ‘trying’ to manage is 100X worse than what they see, even my masks don’t hide it all.
I’ve often explained it like this
Some days I can leap a tall building in a single bound(OK, so a bit of exaggeration)
But some days I’m lucky to be able to crawl out of bed.
I just never know what today will throw at me.
When it comes to rare conditions we have to learn to manage the best way we can around our conditions. Others may not comprehend it all (as if we understand it all ourselves) but I have given up on meeting other people’s expectations. If I can reach my own expectations, I’m having a good day, that’s enough for me.
Now, please understand it has taken me a L.O.N.G. time to get to that point of acceptance. I fought against it, something terrible, for years. I never wanted to accept THIS but the reality is I have no choice. I now have to play the game with the cards I’ve been dealt (even though, I still think the deck is rigged).
I have no choice.
Merl from the Modsupport Team
P.S.
I can’t even ride a bike now. My balance is such a mess, I’d keep falling off the damn thing 