Guest guest Posted June 1, 2000 Report Share Posted June 1, 2000 Hello All What a wonderful vigil we had. A huge thanks to Jeanine and Ellen! Over 200 people attended! Lots of news media in attendance too. Since I am a quiet protester, I must have handed out 50 copies of the NY Times article, and spoke to about 30 people on Fifth Ave., about the reason for the protest and the perils of Lyme Disease... I had a few people ask me what they can do to help, and many wished me better health soon! Believe it or not, I even got a hug from a young woman who was so moved by the protest and my story. My faith in New Yorkers remains strong! Sure hope to see some good coverage on the 11:00 news. I'm exhausted, but I also feel wonderful! I did something to make a difference and that boosted my spirit! I recommend attending rallies, vigils, protests as they have healing powers. Thanks again to all that made the vigil a success! {{{hugs}}} Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2000 Report Share Posted June 20, 2000 In a message dated 6/20/00 4:00:49 AM, lyme-aidegroups writes: << In light of Dr. Steere's claim that he is the victim of an well-oiled organized attack (I'LL GET THE EXACT QUOTE FROM THE NYT article) it is important that this example of the reality of Lyme disease organization be aired. i.e., a group of sick people protested outside a luxury hotel wherein the man who they see as being responsible for their chronic illness was being honored at a $500 a plate dinner attended by , among others, insurance company executives. ------>> Hi Now no one get mad at me... I am going to share something, said to me by a person I know that watched the newscast of the vigil. He said that it was hard to take them (us) seriously when they (us) were all yelling and looking very healthy. As he put it, it is all about marketing and sales. From where he was sitting (in his living room) we were not convincing... I think we need to remember that the media likes screaming and yelling, and they often miss critical less dramatic messages... Some food for thought for the next public demonstration. I was unable to watch the on line video, so I don't know what it looked like. Before anyone throws darts at me... Remember that I was there with you all.... Take care, Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2000 Report Share Posted June 20, 2000 Jane, No darts will be thrown! =) You and this person make a very good point. The hardest thing to explain to friends (and strangers) is that I can go ahead and do something strenuous with you today, but I'll be in bed for the next week. They don't see me in bed, just doing whatever " fun " on that one day. How do we get are point across? Maybe we need to emphasize the people who are too sick to come? Maybe those who are healthy, but have sick friends and/or loved ones, need to speak up more? The only way for someone to really understand is to live with us for a week. And who is crazy enough to do that on a volunteer basis? =) Robynn Hi Now no one get mad at me... I am going to share something, said to me by a person I know that watched the newscast of the vigil. He said that it was hard to take them (us) seriously when they (us) were all yelling and looking very healthy. As he put it, it is all about marketing and sales. From where he was sitting (in his living room) we were not convincing... I think we need to remember that the media likes screaming and yelling, and they often miss critical less dramatic messages... Some food for thought for the next public demonstration. I was unable to watch the on line video, so I don't know what it looked like. Before anyone throws darts at me... Remember that I was there with you all.... Take care, Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2000 Report Share Posted June 21, 2000 Jane, I was at this vigil and was amazed myself at the energy shown there with the crowd. For me I think the excitement came from seeing the actual *sea* of us protesting en masse! It was evident that we were truly in the midst of a real happening (sorry, old hippy speaking) and all the TV camera's added to the event! I was at the NIH in November 1999, only 6 months before, and we were lucky if there were 30 of us, which was a big deal then! Still would like to make a few points though. (1) I went to represent those who could not -- because I've been in my first remission since I became ill 4 years ago. I did lose three whole years of my life which is still much less then most people with Lyme. (2) Even though this event took place 6/1/00 well over 3 weeks ago, I still have not been able to get myself together since. I lost a lot of ground physically that day. (3) Trying to explain what it's like to have Lyme disease to the outside world if futile. Try explaining child birth to a man. (4) All I know is for the first year I was sick (96) I met about 2 people that year who *knew* someone who had Lyme. Year after year I'm hearing more and more from casual acquaintances that they *know someone* who was/is really sick with Lyme. To me our numbers have grown in an epidemic proportions just like AIDS did in the 80's. First it was a few people, then almost everyone *knew someone* who had it. (5) If your friend is not sympathetic to what is happening to people who have to exert every ounce of courage and strength to go protest against this injustice, to borrow an expression from the AIDS days -- a SCIENTIFIC FELONY -- then ... oh well. Marleen <snipped> nebneb@... writes: > Jane, > > No darts will be thrown! =) > > You and this person make a very good point. The hardest thing to explain to > friends (and strangers) is that I can go ahead and do something strenuous > with you today, but I'll be in bed for the next week. They don't see me in > bed, just doing whatever " fun " on that one day. How do we get are point > across? Receive FREE shipping and get to DONATE to charity: http://www.iGive.com/html/refer.cfm?memberid=89257 & causeid=4679 Please visit my favorite animal rescue charity: http://www.imom.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2000 Report Share Posted June 21, 2000 Dear Jane: Before the Gettysburg event, I received many e-mails, including from you, that we shouldn't act happy, we shouldn't celebrate, etc. The one thing I want to be in all of this fraudulent activity is true to myself, other lymies, and our disease by presenting ourselves the way we are. That is the only way we are doing any kind of service to ourselves or others who come after us. If we happen to be happy, so what?? Who says we can't have emotions?? Who says we can't be happy to see others who are fighting this battle with us? I happen to have NO rheumatological symptoms - I simply can't read or concentrate. WHAT DOES THAT LOOK LIKE???? WHAT IS THAT SUPPOSED TO LOOK LIKE???? Should I pretend to limp for the cameras? Or maybe carry a white cane?? Lovette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2000 Report Share Posted June 21, 2000 You and this person make a very good point. The hardest thing to explain to friends (and strangers) is that I can go ahead and do something strenuous with you today, but Regarding the vigil and looking healthy... no one has more marches or protests than those suffering from breast cancer or aids... these people dont look very ill either!! unfortunately the broadcast neglected to show those siting on the floor or across the street who could not stand anymore, who were ill (i was one of them) what could we do? lie down on the sidewalk? while i am not a chanter, I think that may have been one of the things that kept us going..kept most of us standing. It really sucks that we have to keep proving we are sick to everyone. roe __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2000 Report Share Posted June 21, 2000 Lovette wrote: <<Dear Jane: Before the Gettysburg event, I received many e-mails, including from you, that we shouldn't act happy, we shouldn't celebrate, etc. >> Lovette... I must set the record straight... I did not e-mail you about the " celebration " . Everyone.... Again I repeat... I was sharing the view of another that was watching the news cast. I was there too... I too have lost so much. I was not criticizing anyone, merely expressing a point of view from one looking in... I though it might be helpful for future demonstrations... Please don't attack the messenger! If I didn't care, I wouldn't have said anything! Jane (who was there at the vigil...) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2000 Report Share Posted June 21, 2000 my favorite saying from people who find out i have lyme is " but u look so good " ...arghhhhhh i may look good but i feel like shit.....yes i do things ......usually i pay the price for a few days....maybe the tv cameras should have followed a few people home from the rally.....and watched them be bedridden for a few days afterwards......myse4lf...i was offered a ride rite to the site....and as much as i wanted to be there,,,,well " good looking me " was to sick to attend.....g burg sent me to bed for over a week...and almost a month to be what for me is " normal now " ....no sick people do not flush ivs oin city streets do they?????i am sick not deaed yet.....by saying we look good and that because of that we are not sick is the ignorance we have been fighting all along.......cancer pts.....so not always look sick either......explain to ur friend we do not have to look bad to feel bad.......i will send him a picture and my daily itinerarie....its so much fun.....lol.....sorry jane not darts but i have fought this ignorance for 11 years and i am getting sick of it.......when i had to give up my job and business in 96 people said i can't believe ur giving all this up to stay home in bed......i made alot of $$$$$ like i just got lazy ....yea rite......just work they said ...well if god had aloowed me to i would have..... alife of little $$$$$ and collection agency's was not really in my large plan.....but thats what i got and i make the best of it........education is the key.....which is why we attend rallys to educate people....and it seems to be working as we are in the news all the time now..... Reid Quote Link to comment Share on other sites More sharing options...
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