Monday, 31 December 2012

The Power of Ow - Pain = Insane

There is a rather wonderful poem by Robert Frost that goes like this-

The Armful

For every parcel I stoop down to seize
I lose some other off my arms and knees,
And the whole pile is slipping, bottles, buns --
Extremes too hard to comprehend at once,
Yet nothing I should care to leave behind.
With all I have to hold with hand and mind
And heart, if need be, I will do my best
To keep their building balanced at my breast.
I crouch down to prevent them as they fall;
Then sit down in the middle of them all.
I had to drop the armful in the road
And try to stack them in a better load. 

I found it in an equally wonderful anthology “Being Human" last week, and it's been on my mind since because it seems to entirely encapsulates what it feels like to be in pain.

The type of pain and symptoms I experience are a bit like an orchestra; the string section are covering the fibro type pains, which range around all my body. I feel like the cellos are maybe just above my knees, the violins kick in just above my arms, with viola's making persistence high pitched notes around my neck. Exhaustion is probably lower end of the horn section, with sensory oversensitivity on percussion, and headaches provided by the piccolo's shriek. Lastly add to that the emotional impact of my symptoms on my life, (which would probably be the wind section) and the orchestra is complete.

Together they make a symphony, a symptom cacophony, blasting into my consciousness pretty much all of the time. Sometimes it is relatively quiet, sometimes I can hear it but I can tune it out to a certain extent, and sometimes I want to reach for the earplugs or run out the door.

The problem is is that the best way to deal with pain is actually to listen to it. It is to expand your consciousness so that you can hear all of the bits of the orchestra, but• also try and make room for all the other things you are experiencing. To thoughts, and feelings, to what I'm eating, to sitting on the train, to watching the view across the estuary. It isn't that the orchestra gets quieter, it's more like developing your ears so they can hear all the other noises, the cleaner whistling in the corridor, the traffic outside, your heartbeat.

But it means that I often feel overwhelmed, because sometimes it's just too loud and it drowns out everything else, even the things that are good. It is like constantly trying to balance, like in the Robert Frost poem, “extremes too hard to comprehend at once". 

This can make it seem like I'm insane. Because life gives you more parcels all the time. People give you parcels will be time. And they put a little one on top, that to them wouldn't have much effect, and that topples everything over. Things that someone without pain could deal with, completely floor me and I get very upset and very quickly sometimes. And people can't understand why I have such a strong reaction, but it's because I'm already at parcel holding capacity.

It makes me become stressed, easily upset and angered, reactive, and tends to lead to a lot of crying. I used to think that there was something wrong with me because I used to react like this, some deficiency that meant I couldn't cope, but and in the end I realised that it wasn't my fault. That doesn't stop it from affecting me or my friendships and relationships with the people around me, I have lost and damaged them sometimes irreconcilably, but I have stopped hating myself for it. 

But it also taught me emotional resilience, to try and process feelings quickly, to apologise to the person I've just been crazy at, to check all the packages for damage, and to start the slow process of picking them all up again. Sometimes I can hear above the orchestra to the quiet calm in my heart, and that is a special and wonderful feeling. Sometimes, like parcels, everything balances, and there is peace among the cacophony. Sometimes. But if you see the conductor, shoot him!

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!

Wednesday, 24 October 2012

Finding the language of illness....

"Where are the words/to speak this thing in me" Lamb

I've decided to resurrect my blog, after being inspired by Anthony Wilson, who I saw at the Exeter poetry Festival. He read from his collection called riddance which is about his own experience of finding out that he has cancer, his journey through the emotional seesaw of treatment and prognosis, and into remission.

I found his reading very moving, especially because many of the thoughts and feelings he touched upon I could relate to because of my own illness. I talked to him afterwards and told him how I felt, and said how hard I find to write about my own illness, even though it is the biggest thing that ever happened to me, and the most defining thing in my life.

He said that he also found it hard to write about something so big, and I could relate that, for how do I write about something that is so much a part of me, so much a constant, and so much (unless someone has lots of disabled friends) that is often an experience other people don't share?

It's strange, there is so much poetry about emotional pain-regret, loss, jealousy, unrequited love, uncertainty-but there is very little about physical pain. Chronic illness, disability and pain are often conspicuously absent from all art forms- whether the visual arts, writing, poetry or film. Love is a red red rose but what is the feeling of pain that runs like a red river down your arm, like a cold fire? The only language that there is for pain or illness is medical language - tender points, neuropathic pain, chemotherapy, metastasising, pituitary gland, inflamed, spasm - but these are not my language, only the language given to my experience by other people.

Anthony Wilson said that I should try and find my own language, an analogousI have made myself, and pointed me towards  Julia Darling (whose poem I have included, along with mine, and at the bottom). So that's what I'm trying to do at the moment, trying to find my own language for my experience.

And one of the 1st steps of that for me was reading out a poem at the Exeter poetry slam about what it is like to be chronically ill. I was very nervous about doing it, and I didn't get past the 1st round, but I got something better than that: at the end of the night 2 people who are also ill came up to me and said how much they were moved by the poem, and even that it made them cry! Now I don't want to go around making people cry, but being told that I could put something of their experience into words, especially if they found it hard to find the words for it themselves, did feel like a gift.

And right at the end, another woman came up to me, and said that although she wasn't ill, she understood how it felt for things always be an uphill struggle, and that was a gift to for me because it meant that someone shared my experience and that was possible even if they weren't ill.

So that's what I'm trying to do now, to find my own language, and here to make a start is the poem I wrote the slam:

There was no church, no graveside grief
no mourners in black, no funeral wreath
but it was still a death of the self
though its passing went unmarked.

Parts of my brain stopped firing,
whilst others fired too much.
A cowboy electrician had fucked up
the wiring, ridden off on hi-ho
into the horizon’s red glow
ending the life I had known

Some say there are parallel universes,
realities folded like paper dolls,
for each one we see a thousand
fan out over parallel worlds.

And that makes sense
cause in my head there lives another me,
that can walk the length of a street,
have a job and a house, who’s free
to live the life of what could
and should and would have been. 

You think your journeys all planned out,
but fate is a dodgy sat nav
steering you down unmarked roads
twisting lanes you don’t want to go,
destination: unknown.

But this other self grew heavy,
an albatross around my neck
calling the “what if’s”
over and over again.
So I let it fly
kissed it goodbye,
and made peace with life as it is.

And I know that sounds sad,
like giving up,
but its more how the stone
accepts the water that wears it away
cause it knows one day
its shape will fit the river’s flow.

And so I let the current of my life
carve me with pain,
till I sit snug in its grip
smooth in its palm. 

I     In the tsunamis that grab our lives
and drag them into the sea,
what survives in what’s left behind
are the strongest parts of you and me.

So whilst at the drop of a hat
I’d have all I missed back
and would drop one more
to catch a break from the pain ahead,

I’ll take the challenge to walk the line
between the pebble worn to dust,
and one worn smooth by the tide.

And sometimes this is what I want to say
When friends ask “How are you today?”
but the truth is often easier to downplay
and I hide behind “Yeah, I’m okay.”

and Julia Darling's poem:


I did not imagine being bald
at forty four. I didn’t have a plan.
Perhaps a scar or two from growing old,
hot flushes. I’d sit fluttering a fan.

But I am bald, and hardly ever walk
by day, I’m the invalid of these rooms.
stirring soups, awake in the half dark,
not answering the phone when it rings.

I never thought that life could get this small,
that I would care so much about a cup,
the taste of tea, the texture of a shawl,
and whether or not I should get up.

I’m not unhappy. I have learnt to drift
and sip. The smallest things are gifts.