Random Thoughts on CFIDSI just finished reading all the issues of CATHARSIS that I could get hold of. I had been meaning to get to them for quite a while; it was today that I chose to. God. What has been created?
I remember watching a documentary on CFS. I recall very deep feelings afterward. Feelings of fear. Not for myself, but for those I love. I love many people who have acquired this syndrome. Since I started reading through the disABILITY RoundTable on GEnie, and in particular the Chronic Fatigue Syndrome CATegory, I've grown very attached to a few people, three in particular, though I do not know if you could point yourselves out or not, as I have said very little.
I came to the CFS CATegory because of a friend. A friend who had acquired this illness, and my friendship made me want to learn all I could about this illness that strikes at her life. I am now there for myself. I have always been a supporter of people--it's my nature--but this is not that. I am very unused to finding this many quality good people in one place. I lurk most of the time through the area, and when I stick my head in, I usually feel somewhat out of place. I am not "one of you" but I don't feel unwelcome.
CFS in the last 6 months of my life has gone from something I had not heard of to something I feel very strongly about. I tell people about it. I find myself explaining this epidemic to those who knew nothing about it.
Then what am I ... a messenger? No, that is not my calling. A supporter? No, because while I'd like to support, I am here for me, because these people make my life more full.
The one piece in all of the CATHARSIS Issues that sticks in my head most is a short essay by Matt. It's a serious side of Matt, I think it was called "A Few Words," but I could be wrong. It got me to thinking, as you can imagine. I think of CFS often. I love someone with CFS, so it does play a role in my life. But I guess, I haven't really thought of CFS at all.
In many ways I have. In many ways. I can't know (though part of me wishes I could), so I could support better, or know the pain so I could use that pain in my voice when I explain CFIDS to someone else--to let them understand, where now all I can do is make them hear.
Pain. I want to understand it, but I can't say I want it. I want to support, but pain scares. I want to tell of it, but pain scars. So what am I? As I sit here, with a cold in my head and a pulled muscle in my back, feeling badly--yet feeling as healthy as I have ever felt in my entire life. I believe I am society. Go back in time six months and ask me what CFS was, and I would have been able to look you straight in the face and say "a country fried steak sandwich" and wouldn't have blinked. It took five of the most wonderful months of my life to learn what CFIDS was. It took five of the hardest months of my life to learn what CFIDS was.
Those five months are five months most of the rest of society did not have. Others were able to go about their daily lives, quite content in their ignorance. I am much more content in my awareness. It is time for CFIDS to become a priority. It can no longer be dismissed as a "disease of the mind." What we have here is real and pressing. The ignorance about this disease in society is frightening. However, what is more frightening is how much about this illness we do not know. How it is transmitted? Why does it attack who it attacks? These questions, and many more, need answers.
I can try to be a messenger, but when I speak, I speak words. When I have heard those with this illness, I hear pain. It is the pain, experience, first hand knowledge that is necessary to make people react, to find a hope for tomorrow. My hopes rest in a better tomorrow for all of you. I believe that hope starts with knowledge. I will do what I can to inform as many as I can about what is going on, but the burden of this responsibility must fall to you. Those that are most closely involved--for only these people have the experience and pain from which to speak. And I will be the first to stand and applaud when the first person listens.
I love all of you.
© Daniel Poppe, 1996
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