Total Collapse

Before Christmas — 2016

I try to remain hopeful but my body collapsed again.

But I hate this feeling that you've been labeled, that your identity has been consumed by sickness. You are sick. When people look at you, they see sickness. You can see it by the twist of their mouths or a grimace or when they exclaim, "Oh my god! What happened?" upon seeing you. You are a body in decay. That is what you are. And nothing you can do can shake you loose from the incontrovertible fact that you are fading and fading faster than most.  

So you rebel against it. You scream and you flail and you try to prove you're here but the more you fight, the more you evaporate. Your body recoils when you work or do what you love. The primal things that animate you -- the stuff that drives you to continue living in spite of the pain -- are all turned into weapons. And the more you try to scream out art or words or even love, the more silent you become. You just crash harder, you just fade faster.

I think that the American mind -- or any mind that's absorbed Protestant beliefs through osmosis -- has difficulty accepting the ME/CFS disease process. That a disease would inflict such devastating blows to people for working hard seems unimaginable. We like to think there's an order to the universe: if you work hard you will be rewarded. We find it hard to swallow the notion that a person could be punished so brutally for simply pushing themselves just a little more, just a bit further. It’s unacceptable to think that someone can be punished for the sheer audacity of striving, not even for that extra mile, but for that extra yard.

So what if you're given better health for being "lazy"? What happens when even writing a few paragraphs can send you into a torpor for days? The guiding principles that you grew up with -- guiding principles that many people DO benefit from -- have to be thrown out. Nobody wants to believe in a world like that…where virtue is punished and "indolence" is right. And you'd be surprised, I think, how many people with me/cfs or odd autoimmune issues ignored their symptoms for a long time because they did not want to believe in that world.  Who wants to live in a world without reasons?

#mecfs #weirdautoimmuneshit #MCAS #EDS #POTS