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Tuesday, April 12, 2011 8:44 PM
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Ken Torbert
There's a lot of internet name-calling and side-taking and nasty debating going on right now. It's not productive and it takes away from thoughtful discussion. Yelling and arguing is never helpful. Why should people who suffer with the same dreadful disease be going after each other, just because some want to investigate a different disease mechanism that might be affecting their health? I don't have MS...and I'm really, really thankful for that fact. It's a terrible disease. And I don't have to tell you that. It's my husband Jeff who was diagnosed in 2007, and at his time of diagnosis there were many issues with his blood numbers that got me digging into the vascular connection to MS. But I didn't go on that path to be right, or to win arguments or start a social networking site. I did it because I had to help my brilliant husband. I was losing my soul mate, our son was losing his father, the world was losing an original musical talent -and he was my only concern. Actually, he still is. There are going to be many people who do not want to question their neurologists, and view any questioning of the auto-immune theory and EAE as the mouse model of MS as disrespectful and rude. There are also many people who never questioned their parents. I am not one of these people, as my Mom will attest to today. And if you're a fan of this page, you probably ask a lot questions, too. You probably do your own research and reading, and aren't afraid to question authority. From the moment my husband's neurologist laughed at my suggestion that there was a vascular connection to his disease, I began asking questions. That's just who I am. And that's what eventually brought me to Dr. Zamboni's research and Stanford University. The doctors at Stanford love asking questions and developing clinical trials and innovative research. That's why we went there for Jeff. Jeff's like me....he doesn't care if he's right. He just wants to hear the truth.
We can't feel responsible for changing everyone's mind. We don't have to build Rome in one day. We can fund research, support nonprofits that are dialoguing with the doctors and bringing educational forums to patients---this is the mission of CCSVI Alliance, and why I'm working for this group. We can look into local treatment for ourselves and loved ones. We can spread the word on social networking sites, through community outreach and word of mouth. And we can let the rest go. It's OK if people call us names, or yell and scream online, or use pharmaceutical funding to try and quell the research. Because the truth will eventually be elucidated by physicians who remain independent scientists and researchers.
So, next time someone calls you a &*$^ing CCSVI cult member....take a deep, vasodilating breath and send them a blessing. Don't argue about religion, politics or CCSVI. Getting angry only hurts us...and that's not really productive. xox, Joan http://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/why-arguing-never-works/10150156528792211
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