Sunday 05th May 2013

Published 12/10/2014 by Saint

“Sunday 05th May 2013; 10:39 am. Day 17 of Ant not eating.

Totally irritated today. My mother fucking annoys me. Perpetually cleaning and doing washing!!! As I said to R if it’s not nailed down, into the bloody dishwasher or washing machine it goes! Wonder how she would cope in a world without detergents or cleaning facilities!?! Go round the bend in two days flat, I expect! ROLLEYES!!

I miss the pub. I want a drink. Several drinks, in fact.

I’m enjoying this book, writing in it. Before I started I felt pressurised about it but now I am glad I’m writing in it regularly. I miss Richard and Jessica. Also feel quite distant from both, although no-one’s fault. None of the three of us is really in the mood for talking at the moment so apart from bursts of convo here and there, we are largely silent. I’m not taking it personally cos I know from my own feelings, I have minimal energy and even less inclination to chat these days unless I am in a very good mood; and it’s the same with them, I know.

Dr. Carol came today – she says she can see how much weight Antony has lost in the intervening week. She is surprised he is lasting this long, she says. She reiterated that he is a strong and young, healthy man, apart from his tumour. She has such a gentle and kind way of approaching him and us – she’ll always stand, for instance, with her hand on Ant’s arm, while talking to us. Treats him with great dignity which is much more than I can say for the horrible and brash woman who visits from Hospice.

Although we are always keen to know when our children will be born, there is a marked reluctance – not to say fervid disinclination – to know when they’re going to die.”

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04th May 2013

Published 10/10/2014 by Saint

“Saturday 04th May, 2013, 14h00.

Drugs. Mike would be in heaven. Morphine patches, 75mg; enough to send Ant into orbit. We went to the chemist today and got liquid morphine – holding death in my hands. I’ve been elected official administrator of the liquid morphine as the law apparently states that only one person should administer it and keep a written record. Funny, when my mother heard that she first asked if I made it up and then- when I said, no, I didn’t make it up – suggested someone be elected to check me. Always knew she didn’t trust me. Probably cos I am vocal on the subject of euthanasia she thinks I plan to kill Antony. Who guards the guards? Sure there’s some profound Latin quote on the subject dating back to the Roman Empire, sometime. I’ll ask IPG – he’ll know.
It’s a frightening, exciting and powerful feeling knowing you’ve got what is essentially a bottle of poison in your possession. If I were alone in the bushes/back of beyond with Antony, would I kill him as an act of mercy? Would you?

Inasmuch as I definitely want to be here, present and awake when Antony dies (as I was when he was born) I do find the thought frightening to a degree. I wonder and worry, will his eyes start from his head, will he exclaim, scream, shout, beg, swear or just slide gently into a sleep that will never end (as the morticians like to put it) – This was written on Day 16 of Antony not eating.”

Thursday 02nd May 2013 – 09h00 Letters to Ant Part II

Published 08/10/2014 by Saint

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Dear Diary,

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

Letters to Antony, Part 1

Published 06/10/2014 by Saint

When I was given the tremendous privilege of helping look after Antony, as he was dying (with his wife, my sister and my mom), I started keeping a journal of my experiences and impressions and have decided to start blogging again, blogging excerpts from this diary.  Starting on the 29th April, 2013 which is when I started the journal.

Monday 29 April 2013 – From my journal: They say if you stop eating you live for forty days. Wonder if that’s why Jesus stayed in the desert, fasting. Woke up at ungodly hour other nite and calculation came into my head that Ant hasn’t eaten since 18 April so that means he may die on 28 May or before. Doctor Carol said can vary according to the original body weight, age and general health of the individual before food is given up. Antony is healthy and strong, apart from his Brain tumour but still, it makes me quite frightened and sad to think that in a month’s time, he’ll be dead. Life is very ironic because apart from him being too weak to stand, or sit, he is looking healthy; good colour to his skin and clear eyed; as a young baby. I wish I could still speak to him and let him know we are here; I sometimes feel sad thinking that he’s trapped in a world of silence, with only his own thoughts/imaginings to keep him company.

Sometimes I try to tap into his mind to see if I can pick up his ‘frequency’ but in the process of dying it seems the human – like the animal – withdraws increasingly as time goes by, so maybe even if he were not blind and deaf he’d still be lying here, silent and still, looking at who knows what pictures run in front of his sightless eyes. I can only hope that he’s having some form of fun and doesn’t always know he is trapped in his body which is slowly parting from him: like the opposite of two amoebas fusing,

Sometimes though he seems to have searing insights and when that happens it’s like razor blades cutting my soul. Like yesterday he was saying, ‘Look at me, look at what I’ve go!” and he lifted the sheet to show his naked body and shouted: “I’ve got NOTHING!!” I think he meant he’s got no money,no clothes,nothing, but I also feel that right at that moment he could clearly see and grasp all the devastating consequences of his illness and I could see bewilderment and pain on his face and in his eyes. At times like that, we all stand mute. For all our intelligence and theories and facility with words, such moments are searing – you know there’s fuckall you can do or say (even if he could hear you or see you) to make it better; even for a second.

As humans, we always want to fix things; as his mother I’d take on this tumour and die in his stead and I don’t say that heroically as I am just as afraid of death as the next person and wouldn’t wish to exit this world right now,but if I could make a deal with God or the Devil I would, right now.

Ja: Fixing things. When your child falls, there’s plaster, hugs, sugar water, a toy or a sweet to make him smile again. When your son looks you in the eye with a mass growing in his brain and says he’s had a good life and he’s ready to die, well, all your mothering skills, all your comforting words and everything you so confidently thought you ever knew flies right out of the goddamned window and you’re left, mute, stunned into silence by something that steals all your words, steals all your ‘self’ the same way it’s stealing your boy, except, of course, you live to tell the tale, whereas, he does not.

SUCKS FUCKING BALLS!! So will all you well meaning folks STOP ASKING ME HOW HE IS??!?!? HE IS FUCKING DYING?!?!? OK?!?!?!?!?”

Following the Waves

Published 07/09/2012 by Saint

There’s a slight sea mist and a silvery glint on the waves.
There’s a boat that’s come to shore with fishermen wading in the water, they cast a striking silhouette in the strange light.
I wonder where they live
If they’re happy
If they beat their wives
If they have affairs
If they have dreams of singing hard rock or opera
If they love the sea.

Some days are filled
With questions
Yearnings
Strange imaginings
Some days
Just drift
Like seaweed on the waves
On a still day

Some days every exchange you have
Is loaded and exciting
Some days you battle to find anything to say at all.

All life is a series of waves:
Tides coming in
Neap, high, low, spring
Currents pulling and dragging
Throwing you on the sand
Where sometimes you lie like Ursula Andress in her white bikini being kissed with lust
And other times you barely get your feet wet

But the tides carry on regardless of your involvement
With them.
They were here long before
We were born
They’ll continue long after
We are gone

I don’t know if I find that comforting
Or desolate
Does continuity recognise us
Or are we just foam
On the waves?

Impressions of Namibia

Published 14/08/2012 by Saint

I got back from two weeks in Namibia yesterday. Feeling slightly sick so for now I’ll jot down some impressions, pics and other stories will follow.

Things I loved about Namibia:

Lying down in the desert. Sun on my face, pebbles under my back. Just me and the desert and the wide blue sky. The silence was mind opening and calming.

Swakopmund; the town is quaint and charming, the sea, bilious grey sharky waters and wild. Went out to a restaurant on the end of a long pier, waves so high and wild you felt you were in the sea. Got an idea of how it must feel to surf. Saw a jellyfish and some dolphins.

Dune 7. Awesomely large and beautiful. Watched in admiration as one of our group climbed it. Amazingly hectic to do.

Etosha Safari Lodge: had to spend a night there (unscheduled). What a beautiful place; exquisite food, wonderful views, amazing staff.. The stars at night!! Wow

Huge distances

Lots of road travel

The clickety clack of the train on the track (plagiarising Neil Diamond) rocking me to sleep

Wild dancing party on the train, never danced on a train before. Getting down with the African staff was amazing, man they can move like no one’s business, we whiteys pale in comparison. Seeing one of the passengers, a doctor, do gumboot dancing was wow too!!!

Fancy dress night (the same night) – three guys in drag looked sooo good and were funny, spirits were high and we all laughed like mad!

The staff on the train, the guides, the wildnerness, the Namibian people (so friendly, answer to every ‘thank you’ is ‘you’re welcome’). South African service staff could learn a thing or two from these people.

Lovely peeps on the train!! Very friendly and funny

What’ve you lot been up to in my absence? Any eggciting adventures, murders, alien visitations? Anything I should know about? Haha!!

More later !!!