Recently I have come to take stock of myself and how I fit in to this whole CCSVI movement. After close inspection of myself and some other CCSVI advocates I see that many of us are driven by either greed or ego or both. Since I am not affiliated with any clinics my reason has to be ego.
I believe there is a very fine line that we advocates must walk lest we lose sight of our original goal of spreading the news about CCSVI treatment. I lost sight of this due to my ego and I apologize. My goal when I first got involved with CCSVI was to help other MS patients get the true information about CCSVI so they could decide if treatment was a viable option for them. Now there are MS patients being paid finders fees and referral fees by treatment clinics. Some patients even volunteer or work at a particular clinic.
We lose our objectivity when we align ourselves with one Dr. or clinic or accept gifts and payment for referrals. I am not saying this is evil. Who works for free? Why do many feel that every person involved with CCSVI should be an altruist? What I am saying is that if we are truly interested in helping other MS pathttp://www.blogger.com/img/blank.gifients make educated, unbiased choices about their MS treatments then we must truly be disconnected from any one Doctor or clinic. Furthermore we should not allow our egos to get in the way, as gratifying as it is helping other people.
I am going to take a step back from the CCSVI arena for awhile, to get a better view of the forest, so to speak. I need time to decide where and how I can best fit in and actually help the movement rather than just boost my ego.
Subscribe to:
Post Comments (Atom)
Ginger, it was through your knowledge, encouragment and bravery, that I was able to do what I did - In short, I couldn't have/wouldn't have done it without you as ONE of my back-up encouragers, and this has changed my life - Thank you Ginger xoxox
ReplyDeleteHi Ginger,
ReplyDeleteI totally see where you're coming from, however, I have NEVER once had the impression that you had an inflated ego....never once.
I agree wholeheartedly in what you are saying though. The cause, and peoples' quality of life, is so much more important then money or time spent or "5 minutes of fame"!
I have "followed" your posts since the beginning of my quest for knowledge about CCSVI and the Liberation Treatment, and I have never found you to be egocentric. I applaud your efforts, and I applaud your energy and selflessness. You are truly a special woman.
I must say that so far on this journey, not only with my own MS and Liberation, I have discovered that MSers have the biggest hearts! When we were diagnosed with MS, we unwittingly became elite members of an organization of people that CARE, that HELP, that SHARE. How fantastic is that? It is said that when one sense is gone (for example the sense of hearing) that all the others become sharper....well, the same is true in MSers. When our brains start to short circuit and stop sending information correctly to the rest of our body, our heart and souls kick in to make up the difference!
Hear me, fellow MS sufferers, we are there for each other - when the government is not, when the doctors are not - we support each other, we need each other!
Ginger, take your sabbatical. You have worked long and hard and tirelessly. Its not your ego you feel, it is your heart. You are one of US and we love you!!
Heather Dixon
Ginger, it has nothing to do with your ego. You started this from an honest place,a want-to-do something place. If you stop you will be hurting the movement. So, in order to be cruel to be kind, get over yourself and carry on! Love ya.
ReplyDeleteHi Ginger, I promised my self that I would fight alongside you when I was liberated and I am fighting with all the MSers. I do not like this position but it needs to be done. I understand that you need a break, however, until the government and healthcare recognize that treatment for CCSVI helps MS patients, our fight NEEDS to continue. Please rejuvenate and come back when you realize what you add to our group. God bless You!
ReplyDeleteYou have been an inspiration to many, and in my opinion, you were fighting for the cause, not your own ego. Hope to have you back whenever you decide so.
ReplyDeleteYou have nothing to apologize for! You inspired me and gave me the courage to seek treatment. You graciously answered any and all my questions. You motivated me to fight and help others, and be totally honest about it. I thank you sincerely.
ReplyDeleteMaria Dekleer
I hear you Ginger, load and clear. We/you are not driven by ego...ego is a very immature state of being.
ReplyDeleteWe are advocates and I agree, we cannot align ourselves financially or otherwise with anyone but simply help those we can. Otherwise, are we not pushing the wrong way and as guilty of "greed" as we continually say the nay sayers are...?
Hope to see you back soon Ginger...your MS family needs you. xo
First of all Ginger you have been an inspiration for all of us!
ReplyDeleteRight from the very begining , I have wanted dearly to help others..i am 57 and my children are grown and i can rest, if I want.....but so many people are so young and it's a hard road for anyone , and i would not want anyone to have to ge through, what I did. I was liberated on June 5 and 75% of my wish of getting better is to prove it works so it can help others. It just makes me cry to think that people have to suffer needlessly. I did not regain all my powers but, i know it has helped me. My reselution for 2010 was to do everything in my power to bring this treatment to MSers in Canada, started a FB page for my province. wrote 100's of letters, did interviews, organized rallys, took phone calls etc... For 2011, I think the best thing I can do is to get better , to prove the point and be stronger to help everyone...We are all in this together!
It took courage to say that. You speak a truth that I have seen happening. So far I have read/heard of NO documented person with documented DX of MS, who had the surgery and is "cured." Many I see say how great it was for their MS were only diagnosed with MS less than 10 years. Over 10 years ANYONE (and the majority DO) can go from legal blindness/wheelchair/the worst--to 100% back to normal. I did, along with millions of others. It is called: MS. What I see happening is what happened in 1990, everyone racing to get the DMD drugs and being SOO thrilled to get them. "Gave me my life back!" They would say. But after time plays out, they see that MS moves on and they dump the drug for another, then another and so on. Now the latest greatest is CCSVI. And once again, greed steps in, money is t be made from testimonials from people with MS who remitted. I hope I am wrong, but only time will tell. Thank you for speaking this. I know it could not have been easy. You obviously are a good person.
ReplyDeleteGinger,
ReplyDeleteIf it were not for you whom I see as a human aftershock (that is a compliment), following the Zamboni earthquake, there would still be many people suffering needlesssly and still are. It takes the Gingers, the Diane Gordons, Denises, Steve Garvies, Pat Farrells, Christophers, Tim Donovans, Amys and the other precious leaders in this cause, hugs endlessly to you all and to the many I have left out!!! I have had faith that we would get it in Canada soon but now feel defeated and plan to get on a waiting list, some which I have turned away from because I was too busy trying to get awareness activity booming and successful, and with the idea that I didn't really want to dig a pauper's hole to some day settle into. Now, I plan to go to the US and get 'er done. You are an angel and whatever you do, you have turned a very thick page of the Canadian history book. Thank you and everybody involved.
I remember your line "after my treatment, I'm more angry now than before". HUH? What do you mean Ginger? Your explanation sealed the deal for me! This has been tattooed in my mind. I think of it every time I see your name. You have no ego complex. You have a drive to help and give proper information from the heart. That's how I see it. I'll accept your apology for future use .... If needed!! You are loved and a huge inspiration to many. Take a step back and pat yourself on your back!
ReplyDeleteShirley
XOXO
I think what you're doing is smart - very wise. Take some time, put in perspective. Take care of yourself first, and then you can figure out what you need to do...
ReplyDeleteBest,
Susie
Kathleen Lynch said it the best
ReplyDeletehttp://www.youtube.com/watch?v=YY1wYGVegCU
I dont make a habit of going to NMSS web sites but a friend sent me this link and I had to respond:
ReplyDeletehttp://www.facebook.com/topic.php?uid=70484114314&topic=19869
Hey guys, dont know how you came to the gross misunderstanding that I ever took money for CCSVI. My post was referring to people who get paid by certain clinics for referring patients for treatments. I have never done this and never will. I... do not believe it is ethical. My blog was about me questioning the motivations of myself and humans in general. I was getting majorly disillusioned with many folks who seem to be solely motivated by greed and or ego. Because I enjoy helping people I realized that part of my motivation for being a CCSVI advocate was my ego and i was ashamed so I stepped back for a few days of reflection. Once I realized that there was no harm in feeling good about helping people I came back. Plain and simple.
I dont know how some people read that post and misunderstood it so badly!!! EEEEK!!!