The plain fact is, I can’t do anything much. That’s part of the problem. Vampires are meant to be so glamorous and powerful, but I’m here to inform you that being a vampire is nothing like that. Not one bit. On the contrary, it’s like being stuck indoors with the flu watching daytime television, forever and ever. If being a vampire were easy, there wouldn’t have to be a Reformed Vampire Support Group.
Jennifer Brea has been suffering from an un-treatable and not-yet-properly-identified neurological disease. She has been given diagnosis (e.g.: chronic fatigue syndrome) that basically mean nothing and was told it was ‘all in her head.’ This woman has been through the proverbial fire.
Yet, despite extremely difficult physical and social barriers, she has persevered, created a film about her experiences and pursued a life of activism, acting as a voice for all people suffering from invisible and un-diagnosed illnesses.
From her TED talk, you can see her strength, attitude and remarkable good will, as she expresses her hope that one day the medical community will learn how to face a disease like her own and speak the honest truth: I don’t know what is wrong with you.
I have to agree with her statement that this ability to be able to admit to not having an answer is a key step in eventually finding an answer.
Sometimes, you read a book and it fills you with this weird evangelical zeal, and you become convinced that the shattered world will never be put back together unless and until all living humans read the book. And then there are books like An Imperial Affliction, which you can’t tell people about, books so special and rare and yours that advertising your affection feels like a betrayal.
“I’m in love with you, and I’m not in the business of denying myself the simple pleasure of saying true things. I’m in love with you, and I know that love is just a shout into the void, and that oblivion is inevitable, and that we’re all doomed and that there will come a day when all our labor has been returned to dust, and I know the sun will swallow the only earth we’ll ever have, and I am in love with you.”
“That’s what I believe. I believe the universe wants to be noticed. I think the universe is improbably biased toward consciousness, that it rewards intelligence in part because the universe enjoys its elegance being observed. And who am I, living in the middle of history, to tell the universe that it—or my observation of it—is temporary?”
“I thought of my dad telling me that the universe wants to be noticed. But what we want is to be noticed by the universe, to have the universe give a shit what happens to us—not the collective idea of sentient life but each of us, as individuals.”