Tuesday, 27 November 2012

The Power of Ow: pain and the present moment

The concept of being focused on the present moment, being mindful of who we are and what we are feeling now, is seen by the Buddhists as the 1st step towards enlightenment. Now mindfulness has transcended its buddhist roots from which it came and embedded itself in Western culture, especially in the more new age and hippie parts of society. Books such as "The Power of Now" as well as those by numerous Buddhist teachers including the Dalai llama are bestsellers. Clearly people really want to live in the now.

My advice on how to be fully present in the now is to take these steps:

1. take off your right shoe
2. go into your kitchen
3. go up to a wall or kitchen unit
4. stub your toe against it with vigour.

Because of all the ways of bringing oneself into the present - meditation, sex, watching the sunset, listening to music - pain is the most foolproof way of doing it. You cannot but be in the present moment when you're in pain; up to a certain point you can distract yourself from it, but after that it will take up the whole of your mind and thoughts. You will not be able to think about the future, you will not be able to dwell in the past, your experience will be entirely dictated by its presence or absence.

It will eat you up whole, and spit out the pips of any remaining thoughts and feelings left that are your own, leaving only an acute underlying sense of fear at the knowledge that this pain is not only true for now, but may continue into the future. To know, as the Buddhists say, that there is no self all you need do is to experience strong pain that wholly encompasses you to realise this is true. 

I feel all this is true, and I feel that it is true because I frequently experience high levels of pain and discomfort - profound exhaustion, muscle and joint pain, headaches, feverishness, stiffness - that encompass my whole body pretty much from my legs to my head. This is not a fun or enjoyable experience. But pain has also been my biggest teacher - and and I take what lessons from it that I can, even if sometimes they are ones that I don't want to learn in such a harsh way.

I will go into detail about these different lessons in other blog posts, but I wanted to end with one of them:

I realised as I looked more into Buddhism and meditation, that the point of them was not as a tool to reach enlightenment, it wasn't even make you feel happy, but to work out how to deal with our current, in-the-moment, physical and emotional pain in a way that produces less suffering. You cannot circumnavigate pain and move straight to joy without going through it, and learning from it. 

And so I will be writing the sequel to “The Power of Now" called "The Power of Ow" in an attempt to make sense of the lessons learnt from my experience, and what they reflect about myself, human nature and society itself, and to make millions of pounds from it like Eckhart Tolle!

Monday, 19 November 2012

On not being Peter Stringfellow....

Here's a riddle for you:

I have 5 different people working for me, and yet do not work. What am I?

Or to make it even stranger:

I have 5 different people come in every week, most of whom I take my clothes off in front of. What am I?

The answer isn't Peter Stringfellow, nor am I an earner of money from pursuits in the horizontal position (though as the only thing I truly excel at all the time is lying down maybe I should consider it) but that i am disabled and need a lot of help with day to day things that most people do without thinking about it. 

Every week social services pay me money, so that I can employ people to help me with all the things I find difficult - getting dressed, having a shower, writing, getting me drinks and lunch etc.I get the choice of whether to employ an individual, or whether to have it through an agency. They both have their upsides and downsides. If I get someone I'd choose myself, then I can get someone I like and get on well with, but if they are ill, or they leave, I really screwed. An agency means that I'm never quite sure who is going to turn up, they tried to keep it regular people but if someone is ill then they cover it with someone else. But in the end i I chose an agency. 

This means that I have to go from saying hello to someone for the 1st time, to taking off my clothes in front of them and letting them wash my back and legs. I used to find it difficult, but having done it for a while now I quite happily strip off in front of people I've only just met. In a way this is quite freeing, this assurance that of all the people I have had no one has gone “my God, look at you!". I have the 100 carers-and-no-ones-screamed-yet, stamp of approval. Partly it's easy because most of them are in their 40s and 50s, and not the most beautiful people in the world. I imagine I'd feel differently if a young pretty woman came in and I had to take my clothes off in front of her.

But partly it's also the carers themselves - they are so used to people taking their clothes off in front of them that they don't bat an eyelid about it, and they're being comfortable about it makes me feel comfortable. I think that in our culture, nudity is generally associated with sex. We have been conditioned for nudity to be associated with sex. Just the way that some people react women breastfeeding their babies in public, even though this is obviously a completely un-sexual thing, shows this. As does the way people react when women wear things that revealing. 

And even when men do do things that reveal their body, people's reaction is entirely different. The way that women were photographed at beach volleyball, not to mention the fact that they were obliged to wear bikinis, unlike the men who could wear T-shirts, all show how for women nudity and sexualisation are inextricably linked in society. It is so accepted that within a daily newspaper there regular appear topless photos of women, in a "would you like some tits with your bacon roll sir' sort of way. 

I'm not going to go on a long feminist rant about it, although I could do, but I feel lucky to be given the opportunity to be naked, and not be judged for it, and for it not to be seen as a sexualised thing.  It's been good for my self-confidence, then no one has run screaming out the room, and given me more assurance in my body, and comfort in being naked. In the end it really isn't a big deal to take your clothes off in front of someone else unless they make it so. 

Unless we regularly have the experience of being naked in a nonsexual context, then it is hard for women, and hard for society, to break the link between sex and women's bodies. And it is hard to get past the photosshopped insanely perky breasts and concave tummies of magazines to the truth of what women's bodies are like,  unless they're actually seen

So go on, get your kit off.  For the sake of feminism. ;-)

Thursday, 8 November 2012

"Chronic Fatigue Syndrome" My Arse!

When you are ill and disabled, you end up taking on vocabulary that is not your own. This can be in the form of medical language, of Latin names, of obtuse and previously unknown parts of your anatomy which suddenly become foreign to you when spoken in this foreign tongue.

But there are also more subtle uses of language which means you end up using someone else's words. I came across this recently when I had the review from social services. I had been receiving help from what is called an enabler, which I'd never heard of before, but it is literally someone that enables you to live your life, to be yourself, and to be out in the community. I thought it was a really good title, because it was such a positive affirmation that I did not need someone to do things for me, or take care of me, I needed someone who enabled me to be myself.

However now the government has decided to mess around with the language. Someone can only be called an enabler if they are doing short-term rehabilitative work, and although I still get the same amount of money further help it is now classed as being “Daycare". When this change was made obviously no one thought what a disempowering, nonpersons centred and demeaning description this was, and how inaccurate it was in describing me all the type of help I receive. And obviously no one asked someone he was disabled how they would feel about that change, otherwise I think the resounding contempt for it would have made them change their mind.

Sometimes medical language can completely obfuscate the real experience of the person who is ill. This hit home from me recently in an article written by Scott Harris in the Guardian regarding the sad and tragic death of his friend Emily Collingringe who died from chronic fatigue syndrome. He reflected that even the doctors and the public who have finally accepted that chronic fatigue syndrome is a genuine neurological illness and not psychosomatic, even among these people the illness is still called CFS which is still a:  

“ridiculous name… which is almost as damaging to ME sufferers as the symptoms we suffer. Fatigue is what a person feels after a hard work day or an intense session at the gym. It is a gentle tiredness that makes the back ache slightly and the eyelids a little heavy. It is cured by a nap or a reviving espresso. Collingridge was beyond bedridden. She was crippled by incessant agony and dependent on morphine. She was fed through a tube and her body couldn't cope with noise, light or movement. She was doubly incontinent and experienced periods of both blindness and paralysis ... She is now dead. To call the illness that savaged her "chronic fatigue syndrome" is like calling stomach cancer "chronic upset tummy"."

The language given to something or someone shapes how they are seen. It is a filter through which the truth becomes distorted. How the medical profession see us it affects, how the public see us, it even affects how much funding we are given a research, how much drug companies invest in us, and how easy it is so get benefits such as incapacity benefit or disability living allowance.

I refuse to call my illness chronic fatigue syndrome because it does not in any way accurately express the experience I have. I think that's if it was called extreme exhaustion and unrelenting pain syndrome, it would be taken more seriously. But sadly it is usually not disabled people who create the language of their experience, it is something imposed on the. This misrepresentation is for ME sufferers "almost as damaging ... as the symptoms we suffer".

So, Chronic Fatigue Syndrome? My arse!