tag:blogger.com,1999:blog-8466691337834051176.post2737350398929967959..comments2024-03-01T03:37:20.420-05:00Comments on I'M SOMEWHERE ELSE: when loving your enemies is hating yourselfAmanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-8466691337834051176.post-19668377203058305992013-11-23T19:08:47.110-05:002013-11-23T19:08:47.110-05:00I understand a very little bit about what you'...I understand a very little bit about what you're saying, and both of you write very well about it. <br /><br />My social circle is very tiny, because that's all the energy I have. Last night I went to my husband's retirement dinner, so I was with a bunch of people I didn't know, and none of them knew anything about CFS and what it is to live with, INCLUDING the nurse - and it was just so exhausting to contemplate trying to bring even her up to speed a little bit.<br /><br />I ended up giving her my card and sending her to my blog (something you might be able to do IF you think someone is well-intended but ignorant) - and being grateful I didn't have to deal with these lovely people on a regular basis - they were all so healthy and energetic.<br /><br />'Being erased' is a perfect way to put it - and I don't have ANY problems being vocal or self-advocating or speaking to large groups. I can only begin to imagine what it must be like.<br /><br />I do thank you for your words, because you are quite clear when you write. No problem understanding what you mean, and understanding why it is hard to deal with a certain kind of 'normal' person - they don't listen, don't intend to listen, and don't have the capacity to learn from listening - and yet they have power. Way too much power.<br /><br />AliciaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8466691337834051176.post-75050838957584566892013-11-21T10:50:30.507-05:002013-11-21T10:50:30.507-05:00I've been thinking about this because what you...I've been thinking about this because what you write always gets me in a place where there were no words before, which is so nurturing (thank you), and I want to relate it to an experience I just had of looking at a call for presentations at an autism conference. At first I thought I have something to say about this, and I have experience and can speak and it would be useful. Then I imagined being with those people who put these conferences on, and I got that feeling of emptiness and shame that I always get in their presence. The flier said they only would accept evidence-based presentations, and while I know that they will choose mostly presentations with no real science behind them, I also know this is a code word for only accepting presentations from the perspective that we are non-people, because accepting other people as full people is not something that can be based on evidence. So I didn't apply to present. I love the people so much who can use fighting words in these situations, who can see these "call for proposals" and the like as aggressive acts and know what words to use to fight them, and not lose themselves. But I can't - I just lose feeling altogether and disappear. My feelings are not in discrete categories with names, the way most people put their feelings. They're so defining and definitive, and I'm categorically excluded, being cloudy and not sure what I am. I'm not in any one of their categories, so I'm just not anything. When they say "parents" they mean real parents, not me. When they say ppl "with autism" they mean the real ones, not me. They are enemies, and I don't want to hate them, but they erase me. I've been so consumed with wanting to work with them, but I guess I can't work with them until I have ground to stand on and establish that they are enemies first. Starting with the presumption of friendship has not worked - that's the erasing technique.Anonymoushttps://www.blogger.com/profile/02377626500436450924noreply@blogger.com