Thursday, July 14, 2011 2:46 AM
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Linda J. Rousay
Not too many years ago the average person lived and died with little notice. Your name might be in the newspaper on three occasions: When you were hatched, matched and dispatched. (born, married & died).The world was a big place and you weren't likely to see too many other inhabitants. My parents were born, raised, and married in the same little town in West Virginia. If not for World War II, they would have raised their families without ever leaving their little community, just as their parents before them. After WWII, the big move was on. The military allowed me to travel all over the world as just another average woman. I liked it that way. Now we have substantial privacy concerns. Nobody gets to live in their own little world anymore.
The past year, I have encouraged some of my friends who have had the angioplasty procedure and doing very well to join us online to share their stories, knowledge and videos. There are many reasons why they prefer to remain anonymous. Some don't have the time, others are busy trying to make up for lost time. Privacy has always been an issue as well. I don't blame them. It can be time consuming. I have to admit that it also can invoke guilt. I tried to keep my online videos to a minimum because I didn't think a weekly update was necessary or desired. It's hard to know where the line is drawn between being helpful and encouraging and making the transition into bragging, and self promotion. Ginger McQueen once wrote a blog post about the motivation we have in our online activity where MS/CCSVI is concerned. It made me stop and think about my own reasons for research and blogging as well as belonging to several groups and posting comments regularly. In retrospect, I don't think my ego has had much to do with it. Many people have been kind to me and I have made good friends. But the smiley faces and thumbs up comes with a price. Just when I feel satisfied that what me and many others are doing is helpful and worthwhile, there is always somebody ready to throw one of us under the bus again. It happens to me and I have seen it happen to many others. Egos are fragile. It only takes a couple of these incidents to blow the sails right out from under us. So for me, if I didn't want to do this for the long haul because I sincerely care, I would join some of those friends I mentioned earlier.
Several incidents that have nothing to do with me personally have happened. I don't know if it's just that some people have too much time on their hands, or just enjoy the posturing and mud slinging. In some cases, I know that there have been real concerted efforts by people who have a vested interest in MS, but don't have the disease themselves that have threatened and harassed some of us. Their motives are clear. When verbal attacks come from within our ranks, I can't help but conclude that perhaps they don't have a real life and "online CCSVI" is all they care to engage in as a hobby. In any case to protect ourselves some of us start to reconsider our friend lists and do some light housecleaning. I had to do that some months ago when my accounts were hacked repeatedly. It looks like I'll be doing that again. Sometimes being "transparent" is synonymous with being fool hardy.
The latest incident involves two friends who decided to join a Facebook group. They went to their neurologist's office to get copies of their records. The receptionist was talking while writing down the information she needed. My friend inadvertently told her what she was planning to do. She didn't elaborate, mentioning only that she wanted to join the CCSVI movement on the Internet. There was no confrontation, it was quick and friendly. This morning she got a call and was told that she could not have her records until she signed a disclaimer that she would not use any of the medical information in her records online. She also had to agree not to post any videos or before and after pictures. The other person called to tell me that he got the same phone call. Legally he has nothing to stand on. On the other hand, they don't want to be compelled to get a lawyer or file a complaint to get their records. At the moment they are too busy to shaking their heads to make any decisions. I've been going and forth with this all day so I haven't even checked my email today. Ok. Rant is over. Thanks for listening.
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