Tuesday, September 05, 2006


When my pain is bad I often find myself thinking of unusual things, tonight being no exception I was trying to fall asleep when John Merrick came to mind (for those who don't know John Merrick, and I'm not sure if I spelled his name correctly or not but, he was called the elephant man due to rare physical deformities). I went through some of the scenes in the movie, and I think I came to understand what people were afraid of beyond simply his appearance. I believe that generally people were also afraid of his possible actions or reactions, which they were unsure whether they would conform to normal socially acceptable standards. This, of course, was purely base on a preliminary judgement from appearance, but at the same time may have been true due to lack of social skills training due to that same affliction.

I was wondering why this was going on in my head when I remembered an incident in the public pool last week which involved a mentally challenged man coming to close to my arm. The situation was really very benign, the young man was simply saying hello physically instead of verbally, none the less it was still a slightly uncomfortable situation for me. I'm not saying I couldn't have physically stopped this man from touching my arm, but how would I communicate to him that he can't touch a specific appendage? I understood that he was not being aggresive, and I neither felt threatened or upset by the incident, however I did feel confused at how to express my needs in a way that would not offend or upset him.

I am really not sure what meaning or insight I am supposed to get from this yet, but I thought I should put it into words for later reflection. Right now it is a confusing jumble of social skills and graces, warped perceptions and a need for me to be actually heard when I explain what I am going through. It's not a matter of sympathy, but empathy through real understanding. I realize that people know I have some pain, but I also know they don't understand the magnitude of it. Furthermore I know now that pain is much harder to understand than I thought it was before the onset of RSD/CRPS.


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