Word count 30,598
I’m finding that writing about severe ME is much harder than I thought it was going to be. Not because I don’t know what to say; but because it’s bringing up so many emotions. I don’t want the story to be depressing; but I’m finding it hard to balance the reality of being so ill with a story that is relatively pleasant to read. I have always stayed away from the thought of a fictional novel about severe ME because of this very reason and because I didn’t think I could face spending months reliving the horrors that I and so many other have and are going through.
Yesterday I went to see The Help at the cinema, it was a great film and I’ve now got the book to read. I sat there watching it thinking how many prejudices do we hold today that in forty years will seem outdated and wrong? The biggest one for me is the prejudice and discrimination against disabled people because I have personal experience of that. (I don’t really think of myself as disabled, although technically I am, it feels wrong to compare having an illness, not matter how severe; but with potential of getting better, with other people who will never get better and will probably get worse.)
The injustice that I’ve seen is the way we/they are treated and generally viewed, the judgments of lazyness or just not trying hard enough.The stares, the looks, the way people make assumptions about you and your mental state from the way you look or the mobility aides you use. The stupid jokes, tactless and hurtful comments.
I really hope that society changes over the next few decades to start understanding and appreciating disabled people, realising the severity of what they are living through and appreciating the benefits of what they can bring to society.
I don’t know where to go with the severe ME story, if there’s a way to do a smaller amount of the story and then write a longer one at a later date; but if I do that I may never get it done. I wanted to use it as a chance to raise awareness and understanding of what it’s like, if I ever did get it published, reaching an audience who may never know about it otherwise, or only know the sensational things they read in the papers or see on TV. I’ve been procrastinating with this post; but I’m going back now to bring something out of the story that will accomplish my aims of enjoyable and educational.