Time to stop feeding the beast that is intent on eating us. I believe that until some sort of money making model is invented to reap CFS/ME, our community will be the target of and subject to parties and people whose job it is to keep us divided, traumatized and so focused on that trauma that we are rendered as politically disabled as many of us are physically disabled.
Can you see how this takes us off the playing field? The one we just really stepped on with so much hope not too long ago? We finally found our voices. The thing to remember is that these are OUR voices and they weren’t given to us by research, they were inspired by research. And research/government/science/(whatever) cannot take them away unless we give them away.
Yes, there is howling pain when there is a setback. What looks like a huge crash right now may well prove to be a really big speed bump, on the order of what I once encountered while driving around in Mexico. The dreaded “tope” (pronounced toe-pay). It’s about three times the size of our American speed bumps with sharp corners. If you’re not paying attention they can be lethal to your tires. So one person was appointed to watch and would sing out “TOPE!” in order to avoid more problems than were required on this particular trip.
I vote to call these latest events a pretty big tope. Everyone had their eyes on the horizon and were speeding up. Then bang. Now we are on the other side of it, maybe sitting on the side of the road. Damage is being assessed. There are some of us in fistfights in the back seat and it’s taking all of the attention off of the road. Yes, we’re still on the road, it was just a tope.
Pay no attention to the onlookers who are trying to tell you that the damage is so terrible that they will have to help tow your car off to the repair shop, (there to “try” to repair it and possibly even causing more problems than you arrived with in order to make that tope into such a disaster that you can’t continue on your way) even though, with careful inspection, you can see that you’ll probably be okay. It’s worth getting back in the car, quelling the uproar in the back seat, turning the key and easing back onto the road and heading further towards your destination.
We still have our voices. We’re still moving forward, even if we took a bigger hit than we thought possible to sustain. There will always be outbreaks of fighting in the back seat even after periods of relative quiet and harmony. An elbow will be thrown, someone will feel crowded, someone else really enjoys a tussle. The car keeps moving. Now and then it’s time to switch drivers. Either a driver got tired or their stop came along, a different destination than the majority in the car. We just saw a designated driver pitched out, but who says there can’t be a way to circle around and pick her back up, dust her off and cheer her amazing driving skills once again?
But guess what? We patients OWN the car and we actually do have a say in where it goes and how it gets there. Every time research/government/science/(whatever) throws a wall in front of us we can go around! What will we do when it’s actually a wall and not a tope? I say this was a terrific exercise in preparedness and courage and fortitude. Our community is diverse and filled with inventive and capable people, sick or not. A great example of that was the write-in campaign that morphed into such creative forms that it was stunning. Who knew? Who knew what we could be and do until it got started? We have deep resources in the people around us who DO care. That’s a proven thing.
I don’t know about you, but I still feel excitement in the air and movement with our community and also with investigations on the part of researchers. This is so different from the 25 years of stagnation that preceded the Science paper. Like it or not, the dam was breached and here comes a flood. I do not believe it can be stopped because there is the weight of aware and passionate people pushing ahead.
Again I say that I hold with this: he of the highest light wins.