Staying alive

The Bee Gees cover concert was fun. I had a great view from the wheelchair – don’t know about the person behind me, but I was level with the stage, and I could see over the whole audience. People were up and dancing at their seats, in the aisles. I did lots of wheelchair dancing, which I’m sure was very good for my knee, although both my feet are more puffed up today, from being kept in more normal positions and used, last night and today.  

So that was much better than being in hospital. The crowd was even dancing in the interval to ‘Simply the best’. And Staying Alive was a very good song for me. We’ve had the Bee Gees playing in the car today.  

All of us went shopping for some Easter chocolates today, and I went to watch my son play basketball, and we got to the pool, even though it rained just when we were going to go.  

Very active, very lively.


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On chanting and the best of all possible worlds

I chant the Lotus Sutra, nam-myoho-renge-kyo, which is part of many Buddhist traditions, but I have learned it through SGI Buddhism. To me, what it stands for is the divine perfection of everything. When I chant nam-myoho-renge-kyo, the primary focus I have is that everything is perfect as it is, and also perfect in how it continuously changes. A vision that everything is happening at exactly the right time, and is always happening as it is meant to be. All I have to do is be open to this. It is always there, it is my attunement to it that varies. Everything is always changing, and always perfect in the same way.  

A friend was talking to me about whether there were ‘unchanging truths’, going along with what I wrote about all truth being temporary. When I was writing that all truth was temporary, I meant more my individual perception of what I believe, who I am, how I interpret my experience from moment to moment. But I do believe there are larger universal truths. Most of which are paradoxical, such as all things being both perfect and perfectly changing. All time being eternally present.  

Sometimes when I chant I also focus on what I would like to happen, how I would like perfection to be. This is part of the tradition I have learned the chanting from. But I find the greatest peace comes from allowing the idea that the perfection already is, and that I am part of it, more than from intensely focusing on my own version. My own version still induces a feeling of attachment, desire, potential suffering from non-realization of something. Seeing the perfection that already is is much more liberating.  

From a philosophical persperctive, I have read Voltaire’s Candide, where he makes a mockery of the theory that ‘all is for the best in the best of all possible worlds’. He puts the poor innocent Candide, who has been taught this by a philosopher called Pangloss, through all kinds of torments, until Candide gives up on this ludicrous idea, and decides the only way to cope with life is to ‘cultivate one’s own garden’.  

I can see why the theory appears ludicrous. Of course the world is full of torment and horror. Often I feel this way. Often I feel this way about my own life. I can’t say that I am always filled with that spirit of nam-myoho-renge-kyo. But I do know I can feel that way, and it is overwhelmingly beautiful. It is similar to the sense of peace in meditation. But it is different means of accessing that sense. It is easier to access through chanting from a state of emotional disruption. I was feeling that way last night, when I realized I’d be spending either last night or today up at the hospital getting a potassium infusion instead of going out for lunch with Mike on my one appointment free day.  

But today hasn’t been so bad. I have been up at the chemo unit having the potassium, reading, and mostly sleeping. I thought we might still get to the pool with the kids afterwards, but there was a thunderstorm. Anyway, although the potassium was supposed to renew my energy, I feel tired from it. I hope to be rested enough for Mike and I to go to see the Bee Gees cover band tonight. My leg is certainly in a much better state for going out than it was for St Patricks’ Day two weeks ago.  

So is everything in a state of divine perfection?I know that great gurus say ‘nothing ever goes wrong in my world’. I have read also that people who have had Near Death Experiences also have a sense that everything that ever happened, ever has happened, was always just right, there was never anything wrong.  There is also a rational position that this is the best of all possible worlds, because there is no other possible world than the one that is. But rationality is not the source I am coming from. Rather perception.


There is so much peace and love in focusing on the perfection of this moment in space and time. It is hard to maintain on a moment to moment basis. But having chanting and meditation and making the time to keep accessing and training with these is a blessing that fills my spirit with light and purity. And it is true. I can feel it.

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No final decisions yet on next week, for there is still this week to go through…I had blood tests today and at 5pm got a call to go up to the hospital because I had low potassium levels. I put it off until tomorrow because I would have been there all night.  

Before I had been feeling energetic and well and my legs, both of them, had been feeling stronger and more flexible. We went to the pool again this afternoon, and my son came too and played in the water while I was walking up and down. We had fun. I was thinking, perhaps I’ll be walking soon, I feel like I can.  

Then I get the phone call, and am told how low potassium ‘can cause all kinds of problems’. So now what? Just lie down again? I did at first, and felt deflated. So I have done a little moving around still. For in what way am I different? How can a number on a blood printout make a difference to how I am feeling? It doesn’t. I do still feel well, I do still have energy. But I’ll take it easy. And do tomorrow when it comes.

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Photographs and memories

Thinking about early memories, I realize how photographs have a big impact on what I remember. There are some photographs of me, about 1 year old, stout in a (duffel?) coat, a coat with those oblong buttons that go through loops on the outside. My hair is still soft and short. I am holding the big teddy I got for my first birthday or Christmas. A black and white photo. I am outside, in the snow, going to Granny’s house in Daddy’s car, with a teddy nearly as big as I am. But I am holding it very seriously. That is my task at the moment. Move through the snow with the teddy.  

Do I remember this happening? I feel like I do. How do I know where I was going? I suppose Mum probably told me when I saw the photo. Anyway, where else would I have been going? It was a big occasion, though. The newness of the bear, all fluffy and soft. I feel like I can smell that new furriness.  He is still in my cupboard now, that bear, here in
Darwin. I don’t think I have anything else from that time, but he is there. Flat. Stitched up at the back with red thread. A yellowish grey colour, he folds in the middle. Probably smells a bit mouldy right now, with all the rain we’ve been having – but that’ll wear off in the Dry Season.

He is still important, now, as he was then, when I was making a big trip. Going in the car. During the week, Mum and I went to Granny’s – and everywhere else – on the buses.  

Although now I remember – when I was very little, we lived with Granny, in

Tates Avenue

. I wonder when we moved to

Park? I’ll have to ask. It was a big step. I will write about that, too. Where you live in
Belfast is seen as a significant identifier. But my parents didn’t fit in with the crowd. As always, they lived and did things in their own way.

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To face reality or to look away?

How much is it necessary, right now (or next week), to face up to exactly what is happening in my body? I would rather wait. I would rather nothing was changing too, but it is…but is it changing urgently enough that I need to find out now? Couldn’t I wait and see, seeing as it all still bearable, and I can still live with it? I could just see if it stays bearable for next week, and the week of family, without having major new information from the extensive CT scan booked for next Tuesday. I can put it off. It is up to me.  

But then again, perhaps we’d all be better off with new information? Would it be better if we all knew exactly how everything is now? What is better? What way will we all be happier together? What way will we all have ‘better quality of life’? What is that, ‘quality of life’? Maybe sometimes quality of life is not looking at what it is still possible to ignore while it is still possible to hide from it… 

One thing I don’t accept is that the new information should decide whether or not I continue on Herceptin. I don’t think we’ve given it enough time.   

I did get to the pool this morning, and walked in the water. That was wonderful.

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Letting go of little things

Today was about letting small changes flow naturally into my time, letting go of the resistance. It wasn’t easy, but it did evolve, with degrees of acceptance. It increased my awareness of how letting go of little things on a moment to moment basis makes a big difference to enjoying and being in the present. 

I didn’t sleep all that well. I kept thinking about waking up, because someone was calling at 8.30am, and coming around at 9am. Now, there is no need to wake up through the night to reflect on that, is there? But I did. Then I struggled to wake up. Then I got cranky waiting to eat – it was a short time, but I got cranky anyway, because I was tired, and because I thought ‘I would run out of time’ before the arrival. I ate. I got ready. No call yet. And I realised it didn’t matter. It was okay.  

The call and visit did come, later, and were very good and enriching. But the challenge was the initial letting go.  

In the afternoon, the physio adds new exercises to my program, and suggests I go walking in the public pool. I am delighted with this, but again – my mind sees problems. I want to go now! I have to hurry up! But today we have someone coming to fix things at home. Tomorrow I have a visitor at 10.30am, I have doctors’ appointments at 1pm, the kids need Mike to take them places in the afternoon. So when I come back from the physio, I spend most of my meditation time reflecting on when I can get to the pool. Try to change today? Cancel tomorrow morning? What shall I do, what shall I do? It goes round and round my head, I feel teary. All I want to do is go to the pool, why should it be so hard? Then again, why do I need to hurry? Oh, but I do, I do, I need my legs to get better… 

So the thoughts and feelings go round and round. But gradually, I feel the still centre is there. I can go there, even though the other thoughts still flit and jump. I can watch them come and go, the worry, the attachment to doing now, to fitting in, to trying to do everything – because that is there too – if I go to the pool, I mightn’t have time to write my blog, write my stories, do the other neck exercises I planned to do…perhaps also I am not sitting in the right way to meditate, perhaps I am doing it wrong, not maximising my healing, trying to do too many things at once…and then it all lets go…it doesn’t matter…it’s all right…what I am doing is all right, it is what I am doing…it is what I am… 

So the afternoon was peaceful. Listening to my son practise his trumpet (perhaps not everyone’s idea of peaceful…). Talking to my daughter and doing the leg (but not yet the neck) exercises.  

When I check on the receding gum in my mouth, I feel a chalky space/texture under the gum line. It reminds me. I must enjoy now. I have enjoyed today. It would have been hard to enjoy if that tooth had broken. But it hasn’t broken, it doesn’t hurt. I didn’t go to the pool, but my leg is better. I let go of resistance. I keep enjoying today.

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A bird of chaos

I remember being in the kitchen of our flat in
Park in
Belfast, Northern Ireland, where I was born. I am sitting at the table, my feet dangling down from the chair. Suddenly there is something noisy and unusual happening. Beating swirls through the air, sudden movement in front, behind, all around. What is it?

“Oh, a bird!” my mother says.  

A bird.  But birds are quiet things. I see them outside. They fly silently, they hop, they peck, they fit smoothly into the nature of things.  

Now here is a bird of chaos, all wrong, just because it is in the wrong place. I wonder at it. I am delighted and a little bit afraid. The random dashing movement through the air is hard to see. It is hard to understand. A bird? This is not what that word means!  

My mother runs around the kitchen as the bird swoops and dives and bumps. Why is she doing that? It is exciting and puzzling.  

And then it’s quiet again.  

“It’s gone,” says my mother.  The kitchen is just a kitchen. 

This is what I ‘remember’ as being my earliest memory.  It’s hard to know what is an early memory: sequence and order not being that significant in the mind of a child. How old was I? In what I see, I feel small, everything else is big. Part of why I identify it as being so early is the sense of wonder and surprise that something I had definite associations with was ‘being’ something else, it was a world view re-making.

So my earliest memory is of surprise, curiosity, wonder at the world and how it changes.


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