Lyme Policy Wonk: Beam me up, Scotty. See you after the jump!
Why do we do what we do? Sometimes we win, but there are many, many (too many) bumps in the road on the way to success. How do we keep our perspective in the face of an adversary that seems unrelenting—vested, no entrenched, in a medical dogma that leaves patients on the side of the road? A medical society that believes that the views of patients are really–(really?) not relevant to the question at hand? I, for one, want to walk the road of other diseases that have been abandoned and forsaken by the medical establishment. But my road (and those of other illnesses), leads to success. And success–is all about the journey. Touching lives one by one until our day in the sun.
I spoke at the annual patient advocacy training session. The theme of my talk was from a book on social activism by Bill Moyer entitled “Doing Democracy”. I spoke before a group that understand the importance of the work we are doing. How lucky is that? A group of people trying to make a difference. The Lyme community has more activists per square mile than any other illness. Is it any wonder?
My talk focused in on another group that had gone through a similar struggle—breast cancer. I was astonished at the overlay of Lyme and breast cancer. Did you know that women with breast cancer passed laws in 17 states (really!) to secure the right to a lumpectomy against an entrenched medical establishment that did not understand why patients should have any say in treatment. Now think about that. And then think about how a lumpectomy is not controversial anymore. Not at all. That is a future worth creating. I hope to see you after that jump. Beam me up, Scotty!