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<fontfamily><param>Times New Roman</param><bigger>Dear listmembers, I 'll add something to the thread about (in)visibility, that was discussed on the list some time ago. I told in my mail of yesterday that my equilibrium is disturbed and I it happens that I fall and need help to stand up again. When that happened in my own neighbourhood I learned just how much people, that I don't know at all do know me, and know exactly were I live. So it seems my visibility is not lower but higher than that of others. But this is visibility of another kind than Denis Greene wrote about in his "ghost story" in which visibility stands for the extent that people see you as the person you are in spite of the symptoms. Anyway, their reactions are helpfull. It is a situation in which it is clear what is expected of them and in which the initiative is theirs, and they hardly feel embarrassed. Before my surgery it happened sometimes that I was in town (in the Hague ) and I was going "off" and could not walk any more. I entered the most nearby shop, explained in a few words what was going on and asked to call a taxi. This siuation brought about the same helpfull reaction. More difficult were situations in which I travelled by train and became dyskinetic, a situation in which other people are confronted with me without being expected to do something. In situations like that there is much embarassment, and other people made me feel as if I had some highly contagious and disgusting disease. I also experienced this same reaction in other public places like supermarkets. People often stare at me, but immediately turn away when I look back and they startle when I come too close. As a PWP with clearly manifest symptoms I have been in many other European countries. Everywere people behaved about the same way to me, with one exception: Turkey. We had decided to go there in the spring of 1995 for a holiday because I wanted to see the remnants of Greec culture, which exist in large quantities (and high qualities) along he coasts of Turkey. That has for me a bit of extra significance, because I learned classical Greec in my youth, and did read Homer in original untranslated text. We had never gone so far south because Andre, my husband, hates heat and we could go there only when the children had finished their school and we could leave for a holiday in april or may. The way people reacted to me was so amazing different. People in Turkey drink always tea and one is invited everywhere to drink tea with them, for exampe after buying something in a shop. As soon as I am not in my best phase of the med's cycle, I am not able to take a cup and bring it to my mouth. Seeing that, people started to fix up a seat for me were the tea could be put near my mouth and cunjured up a straw, which was exactly what I did need. If people stared at me and I looked back they did not turn away, but came to me and were eager to find something to help me without even the slightest trace of embarassment. Because of that they did not cause me to feel my symptoms as something frightening or disgusting.=20 I gather this difference in culture has some relation to the extent in which society as a whole takes care of the diseased and invalidated and people as individuals feel as a consequence they are not supposed to do something on their own. If that is true, the conclusion is sad; one can not have both caring authorities and caring individuals. But for me, having been politically always more on the left than on the right side, confusing as these concepts have turned out to be ( Dennis, in Europe nobody knows to differentiate left from right any more now communism has lost its power ) it is for me not a conclusion I like to stick to.=20 I am interested in the experiences and thoughts of others in these matters. Regards, Ida Kamphuis, Holland </bigger></fontfamily> -------------------------------------------------------------- Vriendelijke Groeten / Kind regards, Ida Kamphuis mailto: [log in to unmask]