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.

Educate our Physicians!

It is perplexing to me when people tell me they can't reach an accord with their doctors. What must they be thinking? The majority of physicians are unaware of CCSVI. For us it fills our everday lives with hope and promise. As loud as we have raised our voices, we are not reaching the ears of those who can turn the tide for us. There are many dedicated, compassionate doctors being fed the same half truths we are told. 

The problem is education. My doctor was honestly impressed that I brought research and places online for her to check out the things I was telling her. We have to be assertive and let them know we are taking responsibility for our own heath care. We are our own best advocates. When physicians witness our dedication to this procedure, they understand we mean business! These are our lives on the line.

Most people with MS don't die from it, they die with it. What is a half life compared to the way we once were? As long as I am here on this earth and sucking in air, I want to be productive and contributing to my community. Have we really lost our care and concern for our fellow traveler's on this journey through Multiple Sclerosis? We are making history. In years to come people will be amazed at our struggle, survival and triumph. We are protecting our own children and grandchildren from ever having to face the beast that has been our tormentor for too long.

 We can prevail only as we come together and present ourselves as one cohesive unit. With our voices raised in unison, there can be no ear that will not hear our solidarity and determination. We must assert our right to demand this safe, simple procedure that does more within hours for symptom relief than all the years of research and useless drug therapies. It is nothing less than a crime that fortunes have been raised through funding efforts to line the pockets of those who prey upon our vulnerabilities. 

It doesn't matter which country we hail from. All of us are bound by a common cause. We share the same hopes and dreams for a quality of life others take for granted. As diverse as we are, there are no foreigners in this community . We are an elite group of fighters who deserve the same respect and optimal health care as anyone else. Those of us with Multiple Sclerosis are being branded and treated as though we were bastards at a family reunion. We have been lied to and damaged by the very people who proclaim themselves to be our healers and champions. I think we have been led down the garden path long enough. There needs to be accountability from the people who made the choice to deny us the quality of life they enjoy themselves.