Friday, December 10, 2010

Finding Common Ground

Things are hectic for everyone right now and I’m no exception. I have fallen back on my blogging to work on Christmas projects. Today I decided to go to an MS meeting, not something I have done in a very long time. I was invited by a friend from the CCSVI Locator group who lives close by. We had never met in person and communicated only a few times on the internet . I didn’t know what to expect or how I would be received. My plan was to sit, listen and speak only if spoken to. Except for the person who extended the invitation, I was the only person who had the CCSVI angioplasty procedure. A year ago, I would have felt right at ease with a group of people who were using wheelchairs, walkers, canes and crutches. Now I felt out of place. Rick came with me and we sat down out of the way. It was awkward for about two minutes, then everyone began to welcome us and introduce themselves. My friend Roy and his wife came in right before the meeting was to start, and of course I didn’t know him from Adam, until one of the members of the group gave me a heads up. There wasn’t time for chit chat before they began the meeting. Someone had brought a couple boxes of Avonex with her to share. The local National Multiple Sclerosis Society representative was introduced and I began thinking of ways I could quietly slide under the table unnoticed. I started to feel like a sheep being led to slaughter. Had I been set up again? After all, I’ve had my Facebook, Twitter and email accounts hacked , a lawsuit filed against me from a neurologist and numerous confrontations over CCSVI in the very recent past. My words against the NMSS are written all over the internet as I’m sure most of you know. After a short presentation from the nice MS Society lady, Roy was asked to give his presentation about CCSVI. I figuratively wiped the sweat off my forehead when I realized that I would probably leave without being stoned and perhaps my dignity intact. I needn’t have worried, everyone was listening to Roy intently. Most of them knew very little about CCSVI, in fact one lady in a familiar looking power chair had never even heard about it all. Color me majorly surprised. I had no idea I would be asked to speak so therefore prepared nothing. I brought a few pictures with me to show Roy. I knew he had seen my videos on Youtube, but thought he might like to see the difference before and after so he could judge for himself. He told everyone some general information that was well received. The next thing I knew, their chairperson asked me to tell my “story”. Well that took care of any trepidation on my part. My original plan of staying in the background quickly dissipated as I started to speak at length, actually. They were wonderful! They asked questions and were keenly interested in all I had to say. Most of them didn’t notice Rick and I when we walked in, so as I explained my MS journey and level of disability, you could hear a pin drop. A few jaws dropped also. There were some dicey moments when questions about the reticence of neurologists to accept CCSVI, the MS societies’ stand, and of course the drug companies. I wanted to be tactful, but I told them how I feel about all three. The MS society rep. didn’t say a single word for the entire hour after her presentation. She got up and left for a few minutes and came back in the room and sat down.

The normal time to close was ignored and there was considerable chit chat after the meeting was concluded. I think it went extremely well. Most of them asked for my phone number and email address before we left. I decided to share this experience because it gave me some important things to think about. It may seem to many of us that most people with MS are familiar with at least basic information about CCSVI. If today was an example of the reality of this issue, those of us immersed in the entire theory of the venous connection to MS and the Liberation procedure are indeed in the minority. Clearly, education and exposure for CCSVI is sorely lacking in the overall MS community, which may explain in part, the reason that the “Big Three” have been able to sweep us under the rug. I believe that no person or group of people will continue to enjoy their opposition to the angioplasty that is turning the MS world upside down. We are not merely frustrating annoyances anymore and have become a force to be reckoned with. People are tired of the lies, greed and suffering they have been forced to endure and even the most timid are speaking out. We have reached a turning point in our fight for the right to have a better quality of life. In one short year, we have achieved remarkable success though it may not seem that way to most of us as we tackle one obstacle after another. It is happening! We are fighting the good fight and victory is the only logical conclusion.
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