Sorry I haven’t written in you for two days. Somehow the idea of writing in a diary seems more demanding/intimidating than writing in a blog. Maybe cos you know you’re likely, or perhaps BOUND to be more forthcoming in a diary than in a blog.
Poignant moment with Antony last night that brought tears to my heart and to my eyes. I put eyedrops in his eyes and he said, ‘No,not that now.’ Then he seemed to look right at me, as he often does, and said, ‘We can play later, OK?’ That sentence, so childlike in its simplicity and the kind of reassuring/particularly appealing tone he said it in (as someone who is very tired but trying his best to accommodate his young friend) moved me deeply. Part of it is cos I know he’ll never play again, but largely cos of the tremendous pathos that small sentence contained.
Antony’s always been considerate and polite – and that childlike innocence made me see him at the age of two or three again.
I wonder if this tumour’s been growing in his since he was born, and if so, oh, how blissfully ignorant all of us were. Never knowing the dark shadow that was going to cover our lives before our son was thirty – discussing death, helping him to die.
My sister’s psychologist said we must see ourselves as facilitating Antony’s death, now. Irritating turn of phrase, I thought, even if it’s true – sounds like organising a fucking conference of some kind! Facilitate! I mean, fuck!! I know what she means but easy for her to say sitting in her 750/hr rooms being paid to talk kak to people who think they can’t manage their own lives. I’d like to see her ‘facilitating’ Ant’s death when you can’t even fucking make yourself heard to the man cos he can’t hear and can’t see. People talk trite tripe.
Grey and overcast here today. I’ve been very bad on my diet. Eating chocolate every day, still, I am not putting on any weight.
FOURTEEN DAYS since Antony last ate a meal. In between he’s had some yoghurt and a couple of grapes but based on the 40 days, that still puts us at 28th May.
I have been saying why doesn’t God take Antony and let him leave this world, but I guess it’s not for me to say whether he stays or goes. I don’t know that I believe in a God who sits ‘up there’ and pulls random numbers reclaiming his people on Earth (as the gravestones like to say) on some basis unknown and unknowable to ordinary mortals like us. My thinking has always inclined to the universe being random; fate deals the cards we must play, so I don’t actually think God’s going, ‘Hmmmm Antony’s lived past the two weeks he was given in January so now it’s time for him to come home’. No,not at all. We are creatures of the physical realm, firstly, and we decay like any dying dog on the side of any road – we have no special claim to a spiritual kind of dying or a special kind of process whereby a loving God who’s apparently missed us so much during our short sojourn on Earth suddenly craves our company to such an extent he has to whip us up to heaven, pronto, careless of those who remain behind.
If there is a God, I don’t see him as being that sort, bent on a kind of “life as a short term loan” with interest that is so stringent that it claim our very lives and I don’t know quite why the majority of people seem to want to see death in this way.
Maybe it comforts them to think of an entity who’s going to take their loved ones to his bosom and rock them gently for all eternity rather than accepting the idea that all life and all death is random and un-chosen. I mean I could cross the road going to PNP just now and get run over by a car, or I could live to be a hundred; no one knows, and certainly God doesn’t. If God does get involved in human affairs at all I can’t understand why he would allow suffering and hatred and violence and death if he could put a stop to it all. And I don’t respond well to things that make no sense, that have no logic. Therefore I am out of step with the rest of the world on this, as I am on so many things. Either I am an advanced life form or I am an incurable cynic but I just don’t see that these popular theories of death hold any water whatsoever.
In fact the more I hang around on FB reading the self-serving crap people like to spew, the more I realise that people are primarily in the business of fooling themselves and lulling themselves into false senses of security for the purposes of their own mental wellbeing/ability to carry on functioning in a world devoid of logic or any kind of sense at all.
It’s also noted how the phones stop ringing the longer Antony lives. People just can’t sustain an interest unless they’re caught up in the immediacy of a dramatic moment like someone ACTUALLY dying instead of being busy dying. Certain exceptions continue to touch us with their continued involvement and interest, and the previous sentence is not aimed at any one of them at all.
Antony is s scientist, first. He’s been defying medical science since January when he was supposed to have been exiting, stage left, almost to the minute the doctors made their pronouncement. Dr Carol as well as the neuro at Constantia have declared themselves baffled. Trust Ant to go on his own terms and not be told when he’s leaving. 🙂
The idea that he may linger like this for months troubles me – on the one hand cos maybe he is suffering and is aware that he’s stuck in a bed living a life that’s good for no-one and certainly not for him. On the other hand I don’t believe he is suffering. Sometimes he is anxious or irritable but on the whole his eyes are clear of inner turmoil and physically he is definitely pain free (free of HECTIC pain, that is). The morphine must be making him trip balls and maybe he is in fact living the FEAR AND LOATHING life/moments he’s always craved, inside his skull. I certainly hope so.
Who knows what it all means or where it might lead? ANTONY: I think you’re COMFORTABLY NUMB. Gran seems anxious that you’re in pain, and worries a lot about that, but I think you’re OK.
Off to play Comfortably Numb for you, my boy, in my earphones. I LOVE YOU XXX