Wednesday 4 July 2012

Barclay's Diamond or Monarch, we are all just Little Lives

If you have a severe, long term illness, you've almost certainly learnt a skill I learnt. Maybe you have other reasons for learning it.

As the long, long needle is thrust deep, deep into your spine or head or chest, you go to that other place. As your heart fails and you drift away, you mutter a few words to your soul. "I will be or I will not."

As the anaesthetic seeps into your blood and you wonder "Will I wake up?" you remind yourself from somewhere else that sleep is sleep. Either way, you won't care.

As the tube goes deeper into bowel or nose or vein, you step out of yourself and look on impartially. The other you starts a chat or shows you images so beautiful you forget. She is tough and true. When you tell her you might die, she nods and agrees. "We all die." she reminds you.

When you think you can't bear any more, she reminds you that you have to.

When you scream "I can't" she replies "you will"

You drift above yourself and learn to not be there.

In time, you can do it at will. Every new ordeal, every new unbearable is just another moment. The other you appraises the situation coolly, detached from the here and now. "You are small, a little life. This is just a blink of time in a life amongst billions of lives."

And you go to that other place and you wait.

Mostly you have learnt to wait in peace, because peace gives you the best chance of survival of all.


I often think of the skills chronically ill or disabled people can bring to the world.

We learn to survive. We learn to do it in a world often ill equipped to deal with us and unwilling to empathise with us. We learn to be reasonable when all we want to do is scream. We learn to endure when most would believe endurance impossible. We learn to believe in ourselves when no-one else will.

But this gift of detachment, this ability to stand aside and judge ourselves with cool appraisal has been troubling me lately.

Sick and disabled people often live as "the other" they are used to looking at the rest of society and stripping away the "can't" and the "won't" and the "too scared" and the "too selfish"

Surely, it can't only be me that lately finds herself more and more detached, watching the last gasps of a crumbling corrupt order? That sees debauched Roman emperors or megalomaniac monarchs or precarious empires?

Daily, like a parade from history they line up - disgraced politicians,  power-crazed media moguls, criminal financiers, greedy businessmen, corrupt police chiefs, despotic dictators, the head of this and the CEO of that on rape or corruption charges. Expenses cheats and tax evaders and Ponzi scheme charmers.

Their day has come and gone and they can't see it. Their own greed and selfishness and stupidity has gobbled them up. They had it all, there, in the palms of their hands and like every time before, they gambled it all away.

Got just a little too lazy, just a little too weak. A little too bloated and comfortable. Forgot they were privileged and started to believe that they were special. Forgot that they were lucky and started to believe that they were entitled.

The daily me fights them and tries to expose them, but more and more, the other me watches them from a distance and sees them for what they are. More and more I wonder if we really need to do anything at all but watch them crumble.


  1. I agree with what you say Sue, but I could never put it so well.

  2. If we wait long enough Sue

  3. I have a larder. I have skills to survive; I know bushcraft even if I'd struggle to do most of it. Let Rome burn...I do not live in Rome.

    I have been watching 2012 and thinking "It wasn't the Calendar that ended. That's not what the Mayans meant - it meant the world as we know it ending." And they were right. It is. However just because that world is ending doesn't mean the World is gone. The sunrises come. I have berries in the garden.

    My son yells and makes a fuss and today has been one of the worst in a long time, but I have learned to breathe deep, and to shake off what would crush other people to pulp. The other me recites the Litany Against Fear made famous in "Dune":

    I must not fear, fear is the mindkiller. Fear is the little death that brings total obliteration. I will face my fear; I will permit it to pass over me and through me. And when it has gone past, I will turn the inner eye to see its path. Where the fear has gone, there will be nothing. Only I will remain."

    So we must.

  4. Oh the rich and powerful they need to learn that life can change on the flip of a coin.

    The work you/we do is still important even if they fall without you , you help speed it up otherwise it could take years.

  5. western capitalism certainly seems to be on it's last legs.

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  7. I believe Carl Jung called this state of being individuation? Don't fully understand it but your thoughts struck a chord. It's where you become distinct in your own self and apart from the collective whole. I think anyone who has been detached, excluded, marginalised or is not able to take full part in society probably understands this concept. Being unwell gives you an opportunity to stand back and take a long objective look at yourself in relation to everyone else and society as a whole. When you've not so busy being told what to do and when and where, you can take a moment to contemplate what really matters to you. I don't like what I'm seeing one bit. I'm finding myself rejecting a lot of things other people value. Most especially I feel disconnected but even more so disgusted by those given the privilege of powerful positions in society. Politicians who rather than representing the people who gave them their jobs, abuse their positions for personal ideology and personal gain.

    Seems to me that society is built around making and spending as much money as possible and few care what they destroy in their quest to obtain it. Once they have it a lot don't like sharing it either. I'm sure most people, working or not will be wondering how on earth these corrupt, greedy and selfish individuals have so much influence over our daily lives.

    Stand back and watch Rome fall. Though I won't stop shouting at them until it does.

  8. Yeah I get this. Took me a while to realise it wasn't a part of Autism and can be experienced by anyone in such persistent circumstances for a very long time.

    Individually those who have it all and then disgrace themselves might be entirely the authors of their own destruction, without any help from the likes of us. Emma Harrison for example did not have a brush with oblivion because of any blog-post, any investigation or argument. All those things happened, but ultimately what happened with her and her company did so because she held herself tightly to the passive-aggressive political welfare revolutionaries since the 90s and then when she decided finally that they might be taking it a little too far she was punished for her dissent. There is no loyalty among a scourge, only blind relentless purpose.

    But there is always another to take their place. Individuals might Darwin themselves, but the system that creates and nurtures them lives on. That does require people like us to deal with. I feel important.

  9. We do need to do more than just watch these people crumble, because our government has a vested interest in preventing justice being done.

    That's the difference between a Tory government and any other - corrupt politicians exist in all parties, corrupt officials rise to the public eye during all administrations. But only Conservative governments are quite so determined to sweep it all under the carpet this thoroughly, to maintain the corrupt, inefficient, damaging, callous status quo.

    That's what 'conservative' means, after all.

    It's our job to make sure that these events don't happen invisibly or without consequence, and that these people are dragged into the light so that the general public know what has happened on our government's watch - and so that we can at least try to stop it happening again.

    1. I have to take issue on your main point. None of the main parties have anything to be proud of. It would be delusional to trust labour as it was they who thought ESA was a good idea - so despite introducing the now laughable Disability Discrimination Act - they set up the means to discriminate. The Tories have made things worse with a punative approach bordering on nazism.

      For all it is acceptable that disabled people are ridiculed, scorned, disbelieved and oppressed. Despite what is happening to the banks and the Barclay's resignations disabled people having the bloody cheek to claim benefits is the main reason that the economy has implodeded. They have to secure their income and their future before anybody elses. So it is in the interests of the politicos to keep branding us scroungers - all of them against all of us!!!

      That's what we are up against.

  10. Yes, I feel as if I am witnessing some kind of apocalypse that noone else seems to really be noticing... sometimes scary and other times almost comforting as this is also an indication of change.
    I think we need to have the wisdom and capacity to do both of these things... watch the chaos crumble through its own momentum, and do whatever we can to create more positive conditions for what arises in that space.

  11. One of the guys on my site has been thinking along the same lines...'course, he's taken a few more words to say it :-)

  12. I just don't think they care that we can see it. Soon, they'll be living in special domes or underground palaces or whatever, while the rest of us are outside in a raped world that's gone to hell in a handcart. Sorry.

  13. Brian McAlorum (Dr Jings)5 July 2012 at 19:57

    Dear Sue,

    I thoroughly enjoyed this post – highly enlightening, inspirational, and as always informative! I always look forward to and appreciate reading through all your posts, though I don’t often get the chance to leave a comment.

    However, I also enjoy reading through the comments left by many the good folks on your website. Steve cracks me up with his arse-crack patter and makes me laugh, though I feel his pain and can truly relate… Fourbanks is a wise old crooner and not paranoid at all by any means! Oya’s Daughter certainly has glimpsed the beyond and it’s enriching to read her comments.

    Of course there are many illuminating, guiding and helpful comments on your blog Sue, and to read these along with your posts are all very REFRESHING!!

    After reading this post of yours Sue I was pondering the thought if I may leave something – A Short Essay on “PAIN”. I will post it below but “please” just remove it if it’s inappropriate!

    As always “thank you” for keeping us posted, and for your insights on your journey through the desert of the real – amazing…

    My very best and kind wishes to you…

  14. Brian McAlorum5 July 2012 at 20:04

    A short essay
    Written by Brian McAlorum

    (Part 1.)

    "Pain" – a word that describes much more than its dictionary definitions of physical discomfort and mental suffering when it becomes long-term and chronic. Like a spiders lair the effects of pains’ far reaching fibres can turn navigating through life into a complicated web of intricate engineering. To be lost in pain is to find living in this world often unbearable, especially when we may not have the ability or capacity yet to be able to cope adequately with our share.

    At times we may find ourselves treated along the way like an inferior species, sometimes in family and in a changing society. In the animal kingdom the “Mangy Monkey” is run out of town or faces being killed or eaten by the group when he becomes ill and vulnerable. What else can this mean when our world drastically changes – when you find yourself living more on the outer edges of a world you find it hard to fit into – when your dreams are lost to nightmares – when you feel isolated, vulnerable and alone?

    A good man once said, "You have to lose yourself to find yourself" – and with the right guidance and software installed and used on a regular basis that pain may not only be the nemesis that breaks us, but also the salvation that makes us. There is a saying that goes something like, “There are 10,000 ways up the same mountain”, and it’s our job, our responsibility, maybe even our destiny to find one or more of those ways up this mountain – and to find the suitable software and programme that will allow us to tread this bumpy path. For pain can be a doorway just off the familiar corridor of the perceived normality of our world where grace and the essence of life dwells – a beautiful place... What lies at the other side of this door may have otherwise never been glimpsed if it were not through suffering.

    Though the fear, anxiety and the consequences of loss, and the difficulties that come with living each day in pain may for the most part obscure us from this truth. Though through an essential acceptance and surrender the door unlocks and begins to open. But we time and again wrestle with surrender. Why? Because it means accepting the enormous responsibility and all that comes with living in “Pain”. For to willingly accept pain, limitation and suffering is to often accept the very things we loath and want to be rid of the most – and of course this doesn’t make sense to our minds at first, or to large parts of the society in which we live. Eckhart Tolle puts this simply by saying, “The problems of the mind cannot be solved on the level of the mind”.

  15. Brian McAlorum5 July 2012 at 20:07

    (Part 2.)

    Pain may also cause wider loss: having to give up circumstances that we are most familiar with and anxious to keep (take your pick!) – our plans, desires and dreams that are being disintegrated and forgotten by a more immediate and prevalent cause and effect. Being in some way different from the rest of the tribe may mean we are treated with indifference (and maybe with feelings such as e.g. of not being good enough or worthy) – and of course we tend not to really want to be any further isolated than we feel already when we are in so much pain, and maybe feeling quite alone and misunderstood by this experience. In the tribe we may have once found a level of security and shelter, and other needs being met – now we may find ourselves trying desperately hard to cling on to our perceived reality and relationships, our health, our survival as we see it and would like it to be, our job and income etc…

    If we are to let go of these things, situations and ultimately the thoughts created by them, we must first let go of our state of mind that has been fighting for its survival – and to accept things just as they are, just this moment…

    When we let go into this moment, this space, something beyond words and of profound feeling can be activated and come forth from deep inside, and begin to dissolve our defended duality of life as we once knew it. We begin ever so subtly to let go of worry and of trying to conform and contort ourselves into the internal and external worlds that we may have little or even no control over. Worlds where we may have struggled to fit into, or be accepted for who we are or have become. Even death outside this control becomes something less rigid, and equally, compassion becomes you. Surrender often reminds me of what Leonardo Da Vinci once said, “While I thought I have been learning how to live, I have been learning how to die”. Through this elusive and all feeling door of surrender is a way of transforming into an innate oneness of forgiveness, compassion and love. But there still remains the physical world where living on the edge may still be our reality and indeed our very work… and we all know what dwells here, but now, there’s something more?

    I believe there is still significant purpose and hope in having to endure life’s adversities, no matter what the nature of pain you find yourself dealing with – and whatever the diverse dimensions of the cross you may be carrying on your way through life. I also believe that either in sickness or in health that: “You are enough”.

    “I am looking for nothing else but the truth, if only I can stomach the fear”.

  16. found this, thought it was great