I am probably going to feel like shit for the rest of my life (unless something dramatically changes) because “research takes time” when you fund it with the change you found under the @NIHDirector’s sofa cushions.
And I have a lot of life left. Granted, probably less than I thought I did when I was 20 but who really knows because we know absolutely nothing about the course of this disease over a life, what the long run effects are of having non-functioning natural killer cells...
Maybe getting diagnosed with cancer at 28? But I digress...
What I am feeling this morning is the fundamental absurdity of my situation. A sort of double bind. If I don’t take everything I have and am and fight like hell, I am never going to have even the hope of the life I want.
And if I do take everything I have and am and fight like hell, I am also never going to have the life I want. I want to be a filmmaker. If I devoted myself to filmmaking, I think I could become a really, really good one. I don’t want to be an activist. I have to be an activist.
And so @NIHDirector you have killed me twice. First you killed my body with your indifference. And now that same indifference is killing the person I was meant to be. Over actual pennies.
It would be so easy to find real money. It would be so easy to mention #mecfs ever time you talk about the future of the brain. It would be so easy to inspire (and incentivize) scientists to join this field. You choose not to. @NIHDirector
And everyday that choice destroys my chance at a life @NIHDirector
With every award you accept, every ribbon you cut, every photo op that is not a trip to visit and truly understand our post-apocalypse is you saying my life is worthless or at least worth less than the lives you choose to value @NIHDirector
