Hello everyone, everyone,
The music has been taking me to places I’m just feeling very full. I play now with my eyes shut and my glasses off. I play now where I always played and that is because I trust people I’m working with to hit the right notes and to be there. It takes an incredible amount of time to get that trust built up in a band especially incredibly hard when you’re dealing with a disability band. It’s not what they have so much as what we have to do in our minds to get it right and play it. It’s quite a journey.
This will take you to tonight’s story. This is a real story. This is my story. This is where the journey began.
And now it’s time to close our eyes and our thoughts, if only for a moment…and rest.
(A Bitch of a Story)
How do I start? It doesn’t matter; it’s only infinity.
Almost thirty years ago I lost my life for the third or fourth time. I was trying to defend my job on a strike line and a replacement worker hit me with his truck. This guy didn’t kill me but he triggered the disease that has been killing me ever since: fibromyalgia.
Getting fibro is not the issue–surviving with it is the real dance. It attacks the central nervous system, then races through the body, punching and banging all the way, pulling muscles tight. Imagine pulling a bowstring at full tension and then just letting go and letting it attack against the force. That’s how I wake up.
With fibro there are doctors and pills, and witch doctors and con artists. I’m always fighting through a maze of rituals to proceed with my day. I only know what keeps me sane after having not (one) single day in all these many many years where it just doesn’t hurt.
This disease took my life, took my career, took my sanity, and that was only the beginning of my journey. To date, there is no cure for fibromyalgia so what I tell myself is to find a way to smile and never ever give up. The trouble with fibromyalgia is that it never gives up either.
(NEVER EVER GIVE UP).