la_vie_noire | (no subject)

Amazing post about terminal illness: Time to die? Plus Assembly, bunnies, PJ's and a lovely coffin!

People often have two responses when I talk about my disease and the pain, one is to ignore, like I never talked. The idea that it hey it is just Elizabeth, 'EFM' after all, and her condition is weird and painful (and thus somehow pain is okay..for ME). This is set up socially in terminal disease culture where immediately the HEALTHY person is given counseling, has a stack of books of dealing with THEIR pain. There aren’t really any books on dealing with pain of terminal levels, or the path one has to take in order to live while dying. The attitude is, ‘They will be dead so….’ – what is unspoken is, ‘so YOUR pain, you healthy people, at their loss needs to be addressed as does the horror of those late nights of groans and agony we will never know’. For those who HAVE the groans and agony, the idea that only the person NOT in pain is having 'issues' is a rather hurtful one emotionally.

[...] But every time a person tells me, and they do every day, that ‘there is no way they can understand what I am going through’ it only makes me feel further and further from humanity. When in fact, I AM the face of human. We are born, we die, we live, and so we suffer. And while you may not be terminal, that does not make YOUR pain or chronic disease any less! Nor do I try to stop trying to understand it, and to treat YOU as I would want to be treated, with that dignity and understanding (I screw up sometimes, please help me when I do, as you can).

For me, I am just asking others to stop pushing me away verbally, because I feel like I am out in outer space at the edge of a black hole sucking me down into silence. And on the edge of the black hole are people who, with their language and words, push me further and further into that black hole, from which I am alone, forever until the end.

[...] It will never be funny. Because the dignity you take away as they sob, is the dignity which you will be stripped of by the next generation when it is your turn...unless we stop doing this and admit that we are going to die. And treat those who are dying better: Try to understand, respect the efforts they spend and sometimes, realize that we ALL HATE visiting the hospital. But also that time spent going out for coffee could be giving a person who has seen no one face to face for over a week, ten minutes of being treated as an equal human, in an accommodating and loving way.