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Thursday 16 January 2014

A Musing, A Ramble and Thoughts on M.E.

For those of you living without a chronic disability, the chances are you won't really get excited in the same way I'm about to.

Today I started reading the next book on my ever growing TBR (to be read) pile. It's a women's literature book and I've only read the first few chapters, but I just had to share a few sentences. The first sentence is from the end of the first chapter:

Five years ago Eileen had been diagnosed as suffering from M.E. and ... there was a limit to what she could do.
Eileen is the main character's mother, so while she's not (so far) a big part of the story, she is in the main group of characters in my mind. So when I read the above sentence, I actually had to stop and reread it. Surely I had got it wrong. Surely the author didn't mean the same M.E. that is the debilitating and life-changing (and not usually in the good way) chronic disability that I live with.

And later on:
Eileen wasn't getting enough rest, and if that went on for too long, Harriet (the main character) knew her mother would be stuck in bed for days. ... Just as soon as she started to feel well and her energy levels increased she invariably overdid it and was back to where she'd started, feeling ill again.
And my favourite:
...before M.E. sneaked its way into her life and sapped her energy...
So why did these references surprise me so much? Because, other than books that are specifically written about M.E., I have never come across it in fiction before, and definitely not so casually added to the story. And as you know, I've read a lot of books.

While this book isn't 'new' (2004), I can't help but feel a surge of hope at seeing M.E. included in a book this way. It marks, at least to me, the idea that people in general are becoming more aware of it. When you live online, talking mostly to people with chronic disabilities, it's easy to forget that the rest of the world doesn't have much of a clue of what is happening to us.

In some small way it also felt like a validation. I know it shouldn't have, I know what I live with and what it has done to my life and to others' lives, but seeing it in print made it suddenly seem more real. While this may not be a bad thing, especially if M.E. starts to be seen as 'real' by many who currently disagree, it has made the little bit of hope that this is just a bad dream die a little more. Just to be clear, I'm still hopeful and positive about improving. And I'm not so blind as to think that I can just wipe these years out of my mind. But it is pretty overwhelming and ignoring my reality is sometimes the only way I can cope.

Okay, so this post ended up going in a completely different direction from what I planned, but hey, that sometimes happens. And if you're curious, the book is 'Love and Devotion' by Erica James. Is it bad that I'm thinking I'll have to read more of her books just because of this?


leelaplay said...

Thanks so for the encouraging news Tamara. I have always felt that the inclusion of accurate ME info as a sidebar may be one of most effective awareness raising tools.

I'm so glad to see this today, as I just had the opposite experience and am quite upset. I read 'A Death to Record' by Rebecca Tope, and it is the opposite. It includes a minor character who is said to have ME, and is depicted as being a slacker, pretender, lazy, not really being sick...... and many more negative elements implied.

I have written Rebecca Tope, the author, and hope she will make amends in some way - a comment in an interview that she wishes she hadn't written on ME before knowing what it is, a book with a new character accurately depicted.... I included references to the CCC, MEICC (with links) and Invest in ME, MERUK and Julia Newton for UK people to contact.

I hope she will respond responsibly. She is an author I thought I would like to read, but is she is so wrong on ME, that alone stops it, and makes me question any other references in her writing.

If she does not make right in some way, she and her publisher have lost me as a reader and purchaser, and I will also spread the news.

I sure hope she will step up!


Anonymous said...

Leela, the problem with M.E, is there is no definitive 'proof' that someone has it, maybe the author had an experience with someone who was really just lazy and saw M.E. as a 'get out of jail free' card. I really hope they see the truth now though. (Keep bugging them if not :P)

Tamara, I'm really glad that you found a book that includes an M.E. sufferer. I know how it feels not to be included in fiction (and at least I can imagine that every man is actually a transman and it's just not important to the story)

Lots of love