Fit to hear and ease my care

An interesting debate/row has been going on in the Finnish cultural/literary/whatever world/media, concerning the ethical rights of novelists and other authors of fiction (the Finnish term kaunokirjallisuus covers a larger range than the English word fiction, so just try to live with that). It all started with a writer, Riikka Ala-Harja, being accused – in an interview given to the biggest national daily – by her sister and brother-in-law of utilising their no doubt enormously painful and harrowing experiences as parents of a child with leukemia, without their consent, as material for her latest novel. (You will not be surprised to learn that the novel is selling like the proverbial hotcakes, after the extra publicity it's received.)

The question is an interesting one, of course. An author's personal experiences will always somehow seep into her writing, surely, as her experiences are what make her who she is, and she writes as herself, from and with her knowledge. But is there a line that shouldn't be crossed, when it comes to either utilising the experiences of, or writing about one's family members? Or indeed, friends, acquaintances…where does it end…any "real" people…what if you accidentally write something that's actually happened to somebody…?

A lot can be said for both sides of the argument – and against. I am not going to get into that debate here, however (those of you who are disappointed with this choice may start a fist-fight or a more elegant ethical debate in the comments section, should you feel that way inclined). The reason I brought the thing up is that I'm wanting (yes, right now, right here) to go on about aspects of my own life, which I hitherto haven't gone into in great deal, given that, well, I haven't felt sure if it's ethical or not. No, really; I know not a single person in my family reads my blog, and only very few people who know me "on the outside". So it shouldn't matter (it's not like my publisher is having multiple orgasms at my – our – increased sales and the multiple reprints we are going to make and sell). Yet it somehow does (and I'll let it slip that I am on the "writer's right to write what she likes" side of the argument I mentioned earlier, if pressed to pick a side).

This'll all be about my mum, of course. She is, as I said somewhere down there, dying. What she has is a slow killer, an in-the-end-complete debilitator of the body (her mind should remain unaffected – although show me whose mind would be totally unaffected by her body breaking down, quite literally, around the said mind). It's affecting her speaking, breathing, eating apparatus before anything else. What at Epiphany sounded like a bad chesty cold making her a bit hoarse has marched relentlessly on to make her speech a gross, grotesque growly grunting. It is nearly impossible to understand her any longer – even for me who sees her nearly daily, and knows her speech, let alone others. The misery is of course made worse by the fact that most of us people don't know what to make and how to take disability, disabilities, disabled people – and yes, I'm now branding my mother a vocally-disabled person. People daren't say, I'm sorry, I didn't understand – and the warm, brave, clever ones who do, still feel they have to apologise to me – why me? – afterwards: God, I'm so sorry, I hope I didn't upset your mum when I said I didn't understand. Yet it is, of course, infinitely worse and more offending when people – good enough people, right, not accusing them of anything, merely noting their clumsiness around the physical fall-apart of a fellow human – yes, when people, not knowing what else to do and pretending they understood my mother's guttural grunts, produce that exaggerated "oh yes, I agree completely" look and make some theatrically-enthusiastic-yet-non-committal sound, which can be interpreted as yes or no or whatever.

(Seriously, some super fucking painfully funny sketches await writing here:

 Anna's Mum: …and I am still taking part in the world intellectually, you know, I keep up with the world, the illness is only destroying my voice, not my mind.

 Fellow Conversationalist: Ahm! Hmmm…hm. Mmmmh. Yheees. Hm hm. Hm? Oh! Ha-ha, sorry, couldn't quite hear you. Half past two. ) 

We've had the diagnosis for some seven months now; I wish I would have kept a diary of how I feel and have felt, over this time. My various experiences and emotions would make dead brilliant material for my breakthrough novel, what-what. (See, all this looney raving does sorta disjointedly join up, in the end.)

(Years ago, whilst living in fair Wales, I used to follow Desert Island Discs with a fervour close to religiousness. I loved everything about it, including (and possible particularly, although not limited to) the way people were somehow coaxed by - Sue Lawley, was it? Christ, I'll have to google that now. Yes it was her. Brilliant. Excellent – yes, somehow coaxed by Sue Lawley to reveal things of themselves, more than the records did. You will note I haven't forgotten in a hurry that Britt Ekland, then certainly in her fifties, giggled and asked if she could bring "a man" as her luxury item.

But please God let me get off all these tangents – this post was, after all, meant to be about my mother and has landed up being about all fucking sorts. The reason (the legendary, the wonderful) Desert Island Discs was brought into this splat of a post is that I also recall Joan Baez choosing to bring one of her own recordings as one of the eight songs (and eight songs only, ladies and gentlemen) she would like to have to listen to for the rest of her life. Peculiar, no? And even – and this irked me more than it should have, I think, at the time of hearing – somehow superlatively self-satisfied. But, you know, live and learn; Joan gave the reason that "if I one day were to lose my voice, I could listen to this song and remember it" (or words to that effect); and now that my mother's voice is forever, forever, forever gone from this world, whilst she was, bless her, never a great singer at all; these things combine to make me see the sense in Joan's choice, and I forgive her for her apparent folly of choosing a song of her own. This song, in fact. Oh aren't I just super magnanimously forgiving?)