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All posts for the month October, 2014

Sad

Published 29/10/2014 by Saint

Feeling very sad and bad today. I went to the shop and left Mike to make his way to Checkers to meet me there but when he arrived he was bleeding and covered in dust. He fell out of his wheelchair as he was going down the pavement.

He’s still very shocked and now even more paranoid about bumps,holes and uneven surfaces, and I am ashamed that I left him alone. He fell in the road and some guys had to pick him up and put him back in his chair.

If a car had come past he would have been hit and that’s an image I can’t seem to erase from my mind. ¬†I try to give him space and not hover over him for two reasons, one because he needs his dignity to remain as intact as possible and two, he needs to find his independence again.

But if this is the kind of thing that’s going to happen, I can’t leave him again.

Feel crap.

It’s Richard’s Birthday!!

Published 24/10/2014 by Saint

Today, 25 years and about nine hours ago, my second child, also a son, was born at Addington Hospital in Durban, after a very long labour. He arrived at about 00:20, just as I was about to be taken up to theatre for a Caesarian.

I was attended by a lovely midwife, a woman in her late forties, who had come to midwifery late in life, so Richard was her first delivery. I’d been begging for a C-section after hours and hours of labour, but just as the doctor agreed to give me one, and set the drip up, I must have relaxed cos Richard came almost immediately after that. The midwife didn’t even have time to put her gloves on, the attending doctor told her (I later heard) “Bugger the gloves, CATCH the baby!!” ūüôā ¬†She was so overwhelmed with her first delivery she cried, and so did I and I remember her saying what a very pretty baby Richard was.

Because of t he very long labour and the fact that I had¬†a Rhesus negative problem, Richard was taken straight to neonatal ICU, a floor or two below the maternity ward at the time. His blood was tested every hour, by a needle prick on his heel, and I spent most of my time (as much as I was allowed) in the ICU. ¬†I remember the night the family came to see him, Antony was about 4 and he couldn’t get over how cute (and small) Richard’s feet were. So despite it being an anxious time with Rich being in ICU, I felt very happy and contented with my new baby. I remember when he was allowed back in the ward, feeding him at night while watching the harbour lights as I had a magnificent view from a few floors up.

Richard was always a sensitive baby who turned into an extremely friendly and happy child (he was brought up by my sister and my brother-in-law as I have said before).  He loved getting new clothes, from a very young age. I remember when his Granny Rita sent him some winter clothes Рhe was about 2 Рhow he insisted on putting them on and viewing himself in the mirror, too sweet.

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Typical of how smartly Richard liked to dress, from small

That same afternoon I took some lovely pics of him in the late afternoon sun, on his lovely long eyelashes and beautiful face, they still remain some of the best portraits I have ever taken.  I think my sister still has them, must ask her about them now that I think of them again.

Twenty five years have passed since the day he was born, in some ways those years have passed in a flash, in others the years are slowed down and appear in my mind’s eye as a film or set of photographs, of all the stages of his life. ¬†Although a highly complex individual, he’s always been a happy chappy, even tempered and steady in his ways, very loving and caring and loyal to those he loves, polite and professional in his work ethic (to a T, it may be said – whatever he does he does very, very well).

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Richard and I at his second Christmas – Widenham

He’s also one of those multi-talented people, good at whatever he turns his hand to. ¬†He’s done some beautiful pottery, is a fantastic and passionate dancer, brilliant firedancer, an excellent singer, very funny and gifted in the humour department, in fact, as Ant and I once said to one another, we don’t really think there is anything Richard cannot do, and do very well.

rich3 Firepoi on the beach

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Dancing the cha-cha to Let’s Get Loud

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Richard and Granny Rita

rich5 Richard the Model

They say the eyes are the window to the soul.

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Richard has a most beautiful, pure and caring soul and I am not saying that cos I am his mother.

Happy Birthday my sweet, talented, beautiful son!  I feel honoured that I was chosen to bring you into this world.

I’ve watched you grow into a fine young man, and although I miss you terribly since you went to the UK I think that’s the best move you could have made and I am proud of all you have achieved since you have been there, almost a year now.

I wish you every happiness for the rest of your remarkable life; can only imagine you’ll live to be a hundred and ninety, eccentric and original as all hell, as you have always been.

happy-birthday-richard-marc

Monday 06th May 2013 – Ant’s journey continued

Published 21/10/2014 by Saint

This morning after the usual routine of washing Ant and changing bedding etc, I turned him over onto his right side and suddenly he started breathing very heavily, loudly, stertorously; when I described it to Jessica, I said he sounded like a dog panting very heavily. It was very frightening. ¬†His eyes are half closed and he’s breathing open-mouthed.

Dr Carol was called, she came, took one look at him, put her hand on his arm and said to us, in kind, low tones, “Yes, it will be very soon, now”. ¬†We all stood silent. I eventually said, “When you say soon…?” ¬†And she answered, “Today or tomorrow”. ¬†Which left us even more silent, Lauren was visibly upset and shed tears.

I wrote to my friend Colleen on bbm and described his symptoms. She was a nurse and she confirmed he is in extremis, so the official death watch, if one can put it that way, has begun. ¬† ¬†Hard to know what to add to that, so I’ll just leave it at that. We’re all sitting in the room, Lauren’s playing some of Ant’s fave songs, starting with Wish you Were Here, followed by Mad World, by Gary Jules, from the Donnie Darko movie. ¬†My friend is heading for the Arctic Circle, he says. ¬†I wish I were heading for the Arctic Circle. ¬†Wonder if I would ever come back.

The tone in the room is subdued, with Antony’s heavy panting overwhelmingly loud in my ears, and very very frightening to me.

Things that will forever remind me of this death watch time with Antony are: ¬†Johnson’s Baby Powder, Vaseline, Elizabeth Anne’s shampoo (which we use to wash him), nappies (which he refuses to wear and rips off all the time til we gave up), the smell of urine, sweet smiles and crazy talk from Antony – will list a couple or a lot of these later, of the things he’s said. ¬†Bright stars, early winter skies, smoking, silence, long night watches, and him breathing. ¬†Usually he breathes so softly I get up several times a night to make sure he is still breathing (to what end I don’t know). I put my hand up against his mouth to feel his breath on my palm. I feel his pulse, remembering not to use my thumb to do so. ¬†Talking to him in the dark though he can’t hear me though I do and did strongly feel he could hear me on some spiritual plane.

Other reminders:

Chocolate, music, movies – we’re all watching loads of movies. Silence. I said silence already but I’ll say it again and I don’t only mean externally. ¬†Linen bed savers. Rust brown urine in a bag, which tells me his kidneys are failing. Facecloths, his boxer shorts, watching his eyes and hands all the time.

He often seems to point and reach towards something or someone we cannot see. ¬†He tries to sit up and seems quite intent on what/who¬†he sees; I like to think it is my dad, his “Bampa”.

The poem, High Flight comes to mind, so I’ve copied it down:

“High Flight by John Gillespie Magee

 

Oh, I have slipped the surly bonds of earth,

 And danced the skies on laughter-silvered wings;

¬†Sunward I’ve climbed and joined the tumbling mirth

¬†Of sun-split clouds ‚Äď and done a thousand things

 You have not dreamed of Рwheeled and soared and swung 

 High in the sunlit silence. Hovering there,

¬†I’ve chased the shouting wind along and flung

 My eager craft through footless halls of air,

 Up, up the long delirious burning blue

¬†I’ve topped the wind-swept heights with easy grace,

 Where never lark, or even eagle, flew;

¬†And, while with silent, lifting mind I’ve trod

 The high untrespassed sanctity of space,

¬†Put out my hand, and touched the face of God.”

Most beautiful piece of writing.  That is writing, as I said to Antony when I read it to him the other night.

Other reminders: ¬†Sounds of the sea in the silence of the night. Silence. Silence. Silence. Above all, silence. Silence of the muted tongue, silence of the suffering heart, silence so profound it feels like noise. ¬†Noise so soft it feels like silence. S I L E N C E. In death, there is silence, above,beyond and far from the sound of Antony’s laboured breathing. Nothing to be said. ¬†SILENCE

Craig, Ant’s dad, and Erica his partner are coming down from Jo’burg, Loli’s family is on the way too.

The time is at hand.

Sunday 05th May 2013 – cont

Published 20/10/2014 by Saint

Of course, when you’re pregnant, you never think of any day to come when your child may die and you certainly never envisage yourself nursing your child to death in a state that combines such deep pain it almost goes into reverse or becomes a kind of terrible numbness or lack of ability to engage with the dreadful truth of it all, so you go through the motions and help as much as you can, never forgetting for a minute – although you allow yourself to “forget” daily, really, but the truth bubbles and lurks, black and poisonous as Antony’s vomited bile, beneath your very humanness, like a coiled and deadly asp.

I think that was a somewhat convoluted sentence but what I was trying to say was: ¬†you feel and you don’t feel. ¬†You’re in pain and you’re in control. ¬†You wish people would ask you every day how Antony is and if anyone does, you get irritated, cos what kinda question is that for fuck sakes?! ¬†How is ANTONY? ¬†HOW is Antony? ¬†How IS Antony? What the FUCK?!

How do you answer such a question in any event? ¬†Can hardly say, ‘fine thanks. ¬†Much better. ¬†Getting stronger. ¬†Should be back on his feet shortly.’

So if anyone does ask I bury my immediate, in general, FUCK YOU response because most people ask cos they are nosy, very very few because they actually give a fuck, and then I answer something that sounds so odd because it’s couched in somewhat encouraging or reassuring terms (as if I somehow have to reassure the asker) such as: “Declining steadily, thanks for asking”. Which leaves the questioner dumbstruck.

Especially annoying are those who are “praying for a miracle” daily; a miracle that’ll never come, cos it’s just not medically possible for FUCK’S sakes, and why would a God who “GAVE” Antony the tumour (going along with the popular God as chessmaster theory) suddenly bloody take it away FFS!! HELLLOOOOO!!!

Richard said (we were talking about all the things that cross your mind when you’re sitting looking after someone who is dying) “Ya, I thought and think about many things I never thought I’d be thinking.” ¬†I think that pretty much sums it up, really.

Nursing to life. I thought nursing was a process whereby you assist a person – the patient – to get better. ¬†It’s only now I am beginning to understand that nursing is really a process of alleviation of suffering, so whether you’re nursing someone “to life” or nursing someone “to death” the process is the same. You alleviate suffering. As best you can.

Oh well my mother insisted I should be a nurse, when I was leaving school and I threw over the traces by falling pregnant with Ant, and so avoided being drafted into the nursing sisterhood at Jhb General in 1985 and at that time I had a deep dread of nursing, of death, of pain, pus, vomit, excrement, people screaming violently and dying in paroxysms of agony as many films had brainwashed me to expect.

(Writing was interrupted by Antony having a series of small seizures while Lauren was in the shower and I was on my own. ¬†Very scary. ¬†Had to tell myself to be calm cos you wonder again: IS THIS IT? ¬†Is this the moment he’s going to die? ¬†I don’t know why I should be so afraid of seizures, after all, they won’t distress him but we humans (or maybe just me) are so cowardly we like to think we can handle anything until it up and smacks us in the face then we (I) wanna run away screaming like a girl. ¬†Be brave, Colleen. This situation calls for more courage than you have ever needed.)

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.”

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. ¬†ūüôā

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