My personal Story: how to say NO 

To stop being a permanent patient (MAS) in my life, I started saying "no" to this fate with all its surgeries, but I couldn´t argue the NO and even worst, I couldn´t address this NO to anybody on earth - with an official Orphan disease.
Watching many Hollywood movies in my life, I gathered ideas how to look at this fate and how to deal with it - slowly figuring out who might be out there listening to this story.
Finally I had to face that I had no script in my hands, no other actors (with MAS) with me on this lonely stage, no skilled Doctors in front of me, and especially: no Director - simply, nobody to talk to nor to perform with.
My "NO" was against further surgeries and I had to defend myself in front of M.D.´s like a lawyer with zero facts......