I want to lead the ‘not quite normal’ life of going out, appreciating graffiti, making food choices off things called ‘menu’s.’ I am a person who still laughs at highly inappropriate sex jokes from Misfits and wants to figure out where to get a VPN to watch season three. I’m still the gal saving up for her tattoo and who wants the energy to shave my pubic hair into odd shapes (do you think a Celtic knot is possible?). I want to see the southern cross. I’d love to go on a road trip.
But now, a part of me is this disease. And sometimes it creates relationship problems and survival living problems, with pain, nausea, and that’s not what I am going to spend my energy talking about. Except that respite ended with two days of vomiting and suffocating at the same time as my diaphragm failed. And I had two more days with fevers and hallucinations of the room filled with severed body parts of babies. People don’t know how much they can endure until they simply have to endure it. I am in and out of the stage where people die simply because they are too exhausted and have lost the will to go on. But those hours and the things I do aren’t ‘me’, but what I do or endure to allow the possibility of ‘me’ sometime, somehow in the future. And it seems for each trip out, or setback, there is more, longer and harder things to do and endure.
So for now, for this last week and a bit, like Thumpers father in Bambi, if I can’t say anything nice, better to say nothing at all.