Living with COPD

Photo: David Petch.

This should really be titled: Dying with COPD.  I'm desperately trying to find humour in this situation but there is none.

When I was a child I would, when in the bath, cover my face with a wet flannel. For some reason I got pleasure from this until breathing became difficult. I now spend 24 hours a day sucking air through that wet flannel and I cannot remove it. I cannot fill my lungs. All I can do is reminisce.

My GP has given up. The regime of drugs no longer brings much relief. I have been told that I must call an ambulance should things worsen. I'm pretty much house bound except for wheezing struggles to the local supermarket or an occasional pint at the nearest pub.  I spend my days wondering if it is now time to call that ambulance.

I've been considering the blogs and what I should, or should not, delete. I have decided to delete all save Pre-Pentimento and the poetry blog which may be of interest to a child in time. The rest is going including the video's on youtube apart from one, for the same reason. I shall be adding video diaries while I can.

I am collating letters, emails, statements and photographs relating to the past 5 years prior to publication. This is being done in order that I might have a say in explaining the shitty mess that the past couple of years have been.

More later...

Nightmare.

There is an island, at least I think it is an island, it may well be a peninsula or a land locked continental state; I crossed no borders to get there, nor any sea that I can recall, one minute I was not there and then I was there and once there I thought of it as an island but one without any sea views or any boat to escape by not that I or any-one else on that island thought of escape for there was no-where to escape to that we knew of. We often inspected an unreliable bright place in the sky that constantly changed shape or position and sometimes vanished completely leaving us with little doubt that it offered no reliable refuge and what should happen if we arrived there on a day when it chose not to be there. How silly we would feel and how silly we should look to anyone who happened to be casually glancing that way at that time. And there was not a sea between us and that bright place upon which we could launch our hastily constructed balsa wood rafts necessary for an escape. And anyway none of us could swim and what should happen to us if some tsunami chanced our way and tossed us from our rafts and caused us to regret our foolish actions.

The island is a republic, or at least I imagine it is a republic for it has as absolute ruler a fraudulently elected despot of unimaginable cruelty and sublime poor taste. 

We live in crude dwellings while the Emperor lives in a palace constructed from the bones of our dead ancestors, the chandeliers that illuminate his grand rooms are formed from the delicate skeletons of stillborn children, we light our hovels with crude oil lamps that hardly light our hovels at all.

These oil lamps are each contained in a small pink cube manufactured from some strangely terrible material that reeks of fear and whimpers. Each cube, on one facet carries a cameo of the emperor in full regalia astride an unknown beast of his own design.

We have no beasts on this island, the emperors ate them long ago so we are resigned to imagining strange beasts, invariably forged in our nightmares.

We are each responsible for our own pink cube, we must tend the lamp and trim the wick. We must ensure the lamp never falls from it single strand of silk that rots in this tropical climate and must be replaced every hour on the hour, we have no clocks so must estimate the passing of each hour, we are natural comedians in that we have an innate sense of timing. We are not permitted to laugh under any circumstances. We take our comedy very seriously indeed!

The only law that we can rely on states that should one lamp go out or should one pink cube fall and smash on the packed earth floor below then the entire population of the island (save the Emperor) will be put to death. Put to death by whom we do not know but the threat alone is enough to keep us constantly tending our pink cubes (snatching cat-naps and meals (we have no sex lives to speak of) between re-stringing and wick-trimming) to ensure that they remain aloft and alight.

Fuck this for a game of soldiers. We are all going to die anyway, is it not better to die a free man and with dignity rather than tending the pink vanity of a bully and a tyrant.

LOWKEY - GHOSTS OF GRENFELL (ft. MAI KHALIL)

Grenfell Tower one month on. Notes on a vigil.

Lost for words.


Despite living for a while in the shadow of the tower and having witnessed the unbelievable made horrifically real I felt like an intruder.

A community glued in grief came together in silence. A deafening silence. A numbing silence.

The emotional exhaustion is palpable, one senses that it is collective adrenaline alone that is holding things together. In a sense the local authorities inability to deal with the tragedy and the need for the community to take control meant that many were too busy to fall apart in the immediate aftermath of the fire.

RBKC demonstrated that it is not fit for purpose when it comes to 'Local Authority'. It has no authority here now. The only valid authority is in the collective hands of the community.

The fire insulted every sense:  Smell, touch, taste, sight, hearing and fear as well as those arcane, primeval, intangible senses that cannot even be named. As the fire died, an ember, a spark, ignited another sense: A sense that has been smouldering for centuries... A sense of injustice and enough IS enough.

At the vigil I sensed an almighty presence,  a collective ghost. Not here to haunt but to demand justice and change.

Shhhhhh.  Give it time to think and work out a plan.

Lowkey, Grenfell Tower and Portobello Radio.

A rough cut of Lowkey's Grenfell thing first aired here on Portobello Radio. At 46.30 if you cannot be arsed to listen to the entire show. Gang of Four a little later.

Listen and weep and then rage.

https://www.mixcloud.com/Portobello_Radio/portobello-radio-radio-show-ep-111-with-piers-thompson-greg-weir-love-is-the-conqueror/

Shit was the jackals last thought.

There once was a jackal, a lazy, greedy jackal who wandered the forest taking what he could find in
way of sustenance; small mammals, unwary birds and especially eggs stolen from unattended nests. It was a living but rather too much like hard work for his liking.

One afternoon the jackal came upon a peacock preening beside a pool, comparing himself favourably to Narcissus and Brad Pitt.

'Hello'. Said the jackal. 'Ding dong the dinner bell rings'.

'Hold your horses'. Said the peacock. 'I'm all feathers and sinew, all gong and no dinner, you'd find more meat on a petit four.'

'But I'm hungry'. Said the jackal. 'And I am partial to a canapé .

I have a plan said the peacock. and he explained: Let us enter the forest and while I mesmerise the beasts and the birds with my fabulous feathered fan you shall have free range of their nests and their burrows and eat to your fill.

And that is what they did, the peacock preened and recited Pam Ayers and Shelley whilst the jackal gorged.The jackal promised to look after the peacock in return.

That night the Jackal lay down with the peacock and they entertained each other with congratulations and fabulous tales of cowardice and treachery.

They carried on their symbiotic relationship for some months until one day the creatures of the forrest went to the peacock to complain about the thefts from their nests and burrows. Unbeknown to the peacock the jackal was listening from behind a bush as the peacock firmly laid the blame on the jackal.

That night the peacock lay down with the jackal. The jackal ate the peacock... Sure enough all gristle and pomp,  before choking to death on the wishbone.

'Shit'. Was the cock wielding felon's last thought.

My 'post Grenfell' Utopian dream.

One result of the Grenfell disaster must be a complete change in attitude to social housing and the people living within it. Grenfell has opened a can of worms, the can is labelled Grenfell Tower but now opened we find the contents be, not the occupants but RBKC, successive governments and a privileged elite. For decades we have been miss sold the notion that poor people are the problem. It is time to turn that notion on its head.

A tower block is a village.

Villages traditionally grew organically in places that were not accidental or random but because of a natural resource or a social need: it may have been a river crossing, a water source, geological or agricultural resources, a major crossroad, a castle, a church, a need for a staging post for weary horses and travellers... The list is endless. As villages grew in size elements arrived to support the needs of the people...  The village pump or well, the pub, the baker, the village store, the village hall, the church, the village bobby. These services were provided by enterprising villagers or incomers who themselves became part of the community. Modern transport systems and the out of town superstore have put paid to much of the self sufficiency of small communities but much is still there, most importantly the village green which is sacred.

A tower block is a village.

Through careless planning, disregard for the inhabitants and thoughtlessness over the past 70 years or so these 'villages' have been erected throughout Britain. Villages intentionally created without the infrastructure that would allow soul or character to flourish. Multi story carcass parks.

My Utopian vision:

In my tower block there is:

A village green on the roof, planted with wild flowers, a children's garden, bee hives.

Within the building on a mid level floor that is open plan, a cafe and small kids play area by day then a peaceful meeting place in the evening, perhaps a gallery space too,  a place for  children birthday parties and the like. A social place, a village pump. This must not be stigmatised by the patronising title of 'community centre'. Multi purpose spaces can work, Westbank Gallery under the Westway is a good example.

A floor for teenagers with a pool table perhaps, a pinball machine, sounds,  a soundproofed practice room for the Joe Strummers of the future... Ask them what they want and, within reason, give it to them.

A shop or two.

A women only space, a refuge from men.This is not a modern concept, the W.I has existed for generations.

Four lifts, two stairwells, one built into a central concrete core to act as fire escape.

At ground level, a double height entrance lobby, lots of plate glass to break down the barrier that exists presently in such buildings with their steel doors and blank walls. A 24 hour concierge. A seating/meeting area (in an hotel this would be called the lobby lounge and would be considered essential).  Perhaps a small cafe  also catering for a seating area outside the building.  A lavatory/washroom.  I could go on.

My tower will not be clad. It will be painted on a 5 year cycle. The design/colour scheme will be decided by a competition open to all. It will be as dazzling as a honey coloured Cotswold village in its way.

The cost and practicalities. Where is the money going to come from?

Ring fence the council tax and rental income and plough it back into the building and its occupants. Put in place additional subsidies. Scrap Trident.

The services created within the building create jobs. Give those jobs to residents and provide them with training and support if needed.

Treat people with respect and they will invariable reciprocate. Treat people with respect and they will invariably respect their environment.

Regeneration should apply to the occupants as well as the real estate. This applies to all social housing schemes, not just high rise.

Trust me... I'm a dreamer.

Sick humour.

As I am now kept alive by a cocktail of drugs should I want to end it all I would simply underdose.


Boom boom.

Stronger than the wood... Grenfell glue. Bravery and Post Traumatic Stress.

WARNING: Throughout the history of this blog I have endeavoured to speak my mind and as a result have alienated people. What follows is the contents of my mind right now. It will offend but it is not designed to offend. It is the contents of my mind.

I was informed today that I am displaying signs of post traumatic stress. I had already worked that out when I found myself walking in the middle of Ladbroke Grove defying the traffic to hit me.

I then thought of that definition of bravery: 'Grace under fire'.  

Hemingway used that definition.

Was that what he was thinking when he put the twelve bore to his head?

Grace under fire...

NO. He was thinking: 'I cannot cope'.


So I wrote this, but not to offend:


As a schoolboy in woodwork
melting unwanted bovine body parts in a crucible
to make glue
glue that bonded my shoddy magazine rack formed from raped-forest mahogany

Stronger than the wood that glue

In the crucible that was Grenfell
unwanted human body parts melted
to make glue
glue that now bonds a community

Stronger than the wood that glue.

What to do with Grenfell Tower now.

SATIRE ALERT



OPTION 1. Keep it standing, a blackened rotting tooth in this denticured gob called London... Once the horrendous task facing the counters has finished leave exactly as it is, leave the detritus, the ashes, the echoes of screams and the silhouettes of ghosts burned into the walls.

Keep it as it is save two things. Two entrances:

One marked 'The rich door' leading to an express lift to a viewing platform planted with wild flowers in memory of the dead on the roof, from where the whole of this 'fair city' and its injustices may be viewed save the tower itself. No one who is wealthy, greedy, bigoted or all three should be allowed access to this door.

The other, marked 'the poor door' leading to the single blackened stairwell that provided the only means of escape from the inferno and then into each flat, one by one and then finally to a vacant window hole on the 24th floor where there is one choice: either throw yourself from the window or throw your entire wealth save that you realistically need to live on to the good of the people. Only the wealthy, greedy and the bigoted will be granted access to this door and it will be compulsory to all.


Option 2. I lied about two options.

Justice for Grenfell. Official website.

I have cut and pasted this from Ishmahil Blagrove's Facebook post.

Thank you Mohammad Hamza for designing the Justice 4 Grenfell logo. A couple of other websites have appeared, however, the official website for the campaign is: justice4grenfell.org please share and circulate this information so that people are aware of the official site: justice4grenfell.org

Schrodinger's Nightmare. A post Grenfell Tower dream.

I don't sleep much these days... Haunted by a recurring dream:



I am standing beside a concrete structure, it is black and featureless, there are no doors or windows.  There are two tubes sprouting from it, one has a label 'IN' and the other 'OUT', a rubber bung hangs from a chain between them.

From this structure come the terrified screams of people in total distress,  I know who they are. It is unbearable to listen to but I am somehow rooted to the spot.

I have a choice, two options:

1. I can bung up the out tube in order to mute the screams from within. Condemning the occupants to eternal suffering in silence.

2: I can bung up the in tube in order to cut off the air supply. It will most certainly mean death to the occupants but it will put an end to their screams, their suffering, My suffering.

Thus far I have woken before a decision is made.

Awake now, 4.00 am, it occurs to me that I should toss a coin to determine my actions when next confronted by this nightmare and stick with that.

After all. I know that it is not real, no one will suffer. It is merely a subconscious philosophical exercise.

My inner child is shouting: 'Toss the coin'... His name is Kurtz and he is presently playing dominoes with Freud.

Scientology and Tragedy and other Grenfell Tower stories.

There was an extraordinary event yesterday under the Westway. I'll write about it later.

What I want to write about now is this:

As I walked to the event I spotted a bright yellow, high viz van parked adjacent to the flyover. The van informed me that it was the Church of Scientology.


Later as I sat in the garden of the Maxilla centre I noticed that same high viz yellow, this time on T shirts dotted among the crowds adorning those apparently part of the organisation.



The organisers of the event were wearing tags around their necks, one such man was also wearing a high viz yellow cap. I approached him, inspected his tag and asked if he was an organiser of the event. He replied to the positive. I then asked who was behind it all. He pointed to his companion's T shirt, you guessed it, high viz yellow emblazoned with the words: 'Scientology Volunteer Minister'.

I asked him to confirm that. He did.

I went back to my seat and my companion who was carrying a  professional video camera. We then sat and watched as the entire Scientology presence evaporated within seconds. They vanished.

I find this highly disturbing. The Church of Scientology is the last presence one needs in such a situation. They prey on victims, they prey on the marginalised, they prey on the weak, they prey on the confused and all they offer is the impossible. The implausibly sick impossible.

Why were they allowed anywhere near here?

To be continued