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 December 31, 2008, 03:58:21 PM
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Posts: 151
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Very bad time, I have to say something to someone, but still there's very little I can say about it. A constant element in this medical nightmare of 28 years has been an inexplicable dismissiveness and/or obliviousness on the part of countless people. When you're not heard on this big a life-issue to this great an extent, it creates an ongoing, unending, damaging sense of shock and invalidation.
I had all this reawakened by an exchange with someone I've been corresponding with on tape for over a decade. That long-term ongoing shock had been receding since I've seemed to make connections with people online that had been impossible over all the years of this condition, before, and I started to "forget" not being heard for all those years. It all just came flooding back now though.
That's all for now. It seems I can't not talk about this kind of thing. Holding it in becomes disastrous. Sorry about this coming just before New Years... I hope you have a good one.
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"You're better than normal! You're ABnormal!"-- Fry to Leela, who's self-conscious about her single eye, Futurama
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January 04, 2009, 09:24:08 AM
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Posts: 151
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Jason I must say (and hope not to offend you either) but some of you posts are rather cryptic and I can't quiet figure out how to respond. Might just be me :signs002 so sorry if my replies are not what you wanting to hear, trying my best to comprehend what you life is like.  xxxx Sammy  All I can do is ask you to ask a question if something isn't clear... otherwise I won't know what to clarify or how. Sometimes something is maddeningly hard to find language for (such as neurological symptoms and EI reactions), and always it's a struggle to think and talk. Memory is impaired, so I might leave out crucial details. The last thing I want to be is cryptic, and comprehension is all that matters to me, since nothing can be addressed or solved until people understand what I'm saying first. In this case, it would be hard to say what this person I'm corresponding with said, and explain the context well enough for you to see why it had this much of an impact on me. Maybe later I can, if anyone's interested and if I'm in a more communicative state.
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"You're better than normal! You're ABnormal!"-- Fry to Leela, who's self-conscious about her single eye, Futurama
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January 10, 2009, 11:13:49 AM
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Posts: 151
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i always seem to find some way to push your buttons too.
Do you? I only remember one brief difficulty, and it's never offence with me but incomprehension, so it's not buttons being pressed but not being heard. I don't get mad, I feel helpless. You may be reading more into our exchanges than is there. People do that with me. Sam etc-- If it were a mere matter of people not understanding fully, no problem. I'm reasonable and practical. I've been at this forever now, and I wouldn't have simplistic, unrealistic expecations of people anymore by now. I happen to be in a surreal situation where people over several decades have not even begun to hear the most basic aspects of this. The extent to which what I say has not even been noticed over three decades is extreme enough to remind one of some sort of Twilight Zone episode. I can correspond for years with someone and he will think the eye problem is mild, as if I haven't spent a total of many, many hours on audiotape detailing just how severe it is. I can know someone for a decade and he thinks I'm well enough to work at a job and live a normal life. I can only hope that someone can have enough respect that he/she will realize that I wouldn't react this way if the provocation weren't something pretty big, and disturbing. It's more involved than anything I've been able to explain here.
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"You're better than normal! You're ABnormal!"-- Fry to Leela, who's self-conscious about her single eye, Futurama
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