Tuesday, 21 October 2008

So, what haven't I been telling you?

Ah well, I bet some of you guessed. All this focussing on poor Lucy - could it be allegorical?, I’ve heard the voices cry. And I have to answer, oh yes. Of course. At least half of it is a cover-up for my own sorry state – even to myself.

But, then again, it’s not really one story to tell another [allegory] but, rather, one story (Lucy’s) running parallel to another (my own). Neither of us “enjoying good health” at the moment – oh, okay, the past couple of months! Since Tom left. There, I said it. Since Tom left, Lucy and I have been going, kind-of, downhill. But hey, has anyone reached the bottom yet - crashed (there’s a word the MS Nurse likes!) and made a conscious decision to stop trying? Hell no – there’s a light at the top of that hill and, I hope with Lucy following, I’m still aiming for it. Even if, only metaphorically!

And so, what have you got now? Well, to be honest, two cripples, limping (Tom trod on Lucy the other day and ripped another [he’s done it before - Vet says: “common accident”!] long nail from her paw (oh, muchos blood!)), and I – on top of my normal spastic gait – have a twisted foot after rushing after Tom – who had whisked L. to the Vet the next morning without a coat or carrier – and tripping over the metal threshold of the kitchen door! Lucy’s head is still “shaking” (see previous post), and I, who have also developed asthmatic or COPD problems and nearly died the other week, haven’t had a shower for… a while.

We do not have carers. Nor even a social worker (did I tell you how “H.” wrote me a letter, in July, telling me that due to her promotion [manager] she could no longer be my s.w. but that no one has taken over or will get on with it when I call? Heck, that should be a whole newspaper article one day – and shame on me for not doing it yet.)

The trouble is, as you know (and so do they!), I can’t tolerate “carers” (I prefer the name “helpers” – no body cares) beause of their perfumes and my Multi Chemical Sensitivity (MCS) . I wish I could sue Procter and Gamble [Ariel/Bold washing powders; etc.] for a start!). You know, I wouldn’t be writing now – or any time – if I was having to breathe that in all day. I’d be in a much worse mess, physically and mentally.

The problems with not having them (carers - see how annoying that word gets?), of course, are that: it’s much harder for me physically (that’s not an oxymoron with above) and might be impossible one day; I have to spend more time humanly alone – and nowadays that seems to cause panic and asthma; Lucy misses Tom and gets spoiled when he’s here so that she’s even sadder when he goes again (ditto me?!), and the worst thing: Tom is desperate to get rid of the whole schibang (my situation – me), ergo, he’s getting mean.

And there’s a boy who started off as a saint. Really. Always the kindest person (as child and adult) anyone could wish to meet. It’s the tragedy of MS and diseases like it - where no one gets better nor ever will (degenerative) - that truly, the rewards for any care-givers are invisible. If they don’t have a religious faith they will not see that their efforts are appreciated but only feel impotent as the patient’s condition worsens. And it will be soul-destroying. (No wonder in this secular society of ours euthanasia is being so touted as the right way to [pun] go!)…

Ah, but what if the patient were actually smiling? If not on the outside then inside, filled with joy? Who’s to judge whether anyone – no matter how hopeless their state seems to be – because of, and with, their own beliefs, might not be perfectly content (as long as comfortable) to leave this world and move on to the next? In an atheist’s language: to be dying. No one can know that isn’t how it is – on the inside. Happy!

And that is why euthanasia is so wrong. And why a care-giver should always have hope.

And so one tries! Surrounded as I am by the paintings and statues of the Christian tradition – reminders of the family we strive to be near and the Heaven we long to be home in, one day. I try to be a witness to their assistance in my struggles and to keep smiling – visibly, to show my gratitude to Tom and convince him of the value of his help and prove I don’t mind.

But, of course, this is MS. With all it’s emotional lability (which, literally, is brain-damage) and it ain’t always pretty! In fact it can be positively nasty: laughing/crying for all the wrong reasons; neurotic; panicky; quick to explode in temper (pain doesn’t help!); loud/timid/exceptionally nervous; insecure; anxious; afraid. It goes on and it’s difficult for anyone to deal with. It is often unrecognisable, even to the patient – in this case to me.

As someone who does have a faith, this, can only be the work of the Enemy.

To others unjustified, it leaves you looking like a hypocrite, feeling guilty, and very alone.

This is multiple sclerosis, in all it’s sclerotic glory: eating away at the essence of who you are and maybe finishing only when there’s nothing left of worth.

Except what God can find in your intrinsic dignity and the prayer you leave behind on the silent air-waves.

I guess what I’m trying to say – in case you thought I’d lost it and got my blogs mixed up (I do have a quiet one called Pure Catholic)! – is that, no matter what happens to me - or how - no matter if poor, little Lucy has to go and live somewhere else because I can’t cope (but I’ll do whatever I can to prevent that!), then this will have been worth while.

Tom should be a saint, for how much he’s tried. (Oh yes, and last night, as he cooked another of my favourite fish curries, I sensed all would be well when we were discussing – as one does – the media and verbal engineering, and he told me [I paraphrase] that a NIB he read stated (allegedly!): “When this country was religious, people used to care for each other; now, in the modern age, nobody does…” – as if to say, there is no religion any more. God has disappeared as being an old-fashioned figment of our imaginations. No one believes. And Tom was incensed by this, by the message it put across: “I’d like to ask them to imagine a society where, truly, there is no religion. Can you imagine the anarchy and nihilism then? Oh I think,” he continued, “they’d have to admit, there are a lot of religious people now!” Good point, I thought. Clever… Yes, I see a lot of hope for Tom!)

And I am looking forward – though I don’t long for it/need it hastened – to the end, which, I believe, will be a beginning. No worries when I’m gone.


Right, I’m off to work on the MS blog for a bit – the “MonSter” having finally got me! And I might even try to write the novel I meant to write (NaNoWriMo in November!) so I’ll be away for a while.

But, even if I never come back, know it’ll be all right. And I love you.

God bless.