Tuesday, 26 December 2017

‘Carry on as normal’ is not the same as denial; with denial you pretend that the reality doesn’t exist as opposed to ‘carry on ...’ where you accept the reality but don’t give in to the anxiety it provokes, not letting that dictate your actions or limit your horizons.
With the Ataxia  I accept the diagnosis whereas I don’t worry about the prognosis; I cannot live my life now how I imagine it might be at some point in the future; so 76% of cases of SCA17 develop dementia, statistics inform me.  That means 24% don’t! Yes it makes me anxious and makes me wonder if every forgetful moment is the first sign but I dismiss that notion because I am learning (yes still learning!) not to let worry rule me and feel fine. 
Accept the diagnosis
Live your own prognosis



 I am making a new show in March, to be directed by the excellent Jack Klaff.

The brooding photo below was taken by the excellent Ros Hobley.

Thanks to the funds raised so far I will be travelling to Köln in Germany on Jan 2 to work with the excellent Ekki Maas in his recording studio on the music for the show

The far from excellent working title is by me.


Sunday, 17 December 2017

The practioners of the past become the philosophers of the present

Listening to a podcast about the history of post modern dance the speaker, once a dancer and player in the final decades of the last century loses his audience because they cannot understand the language he uses, and he can’t understand the world has moved on and people are not interested, the language has changed. The interviewer struggles to be between The speaker and his audience in order to translate what he has to say, to make it relevant to modern ears. But what was resonant about the Dance work we did at Dartington, and felt crucial, was in the doing of it then, not the talking about it now. I have not heard of an account of the work at that time that translates the seeming importance of the Dance work to modern ears. Maybe documentation?The practioners of the past become philosophers of the present as they age, but the world has moved on and different issues are crucial

Saturday, 9 December 2017

YesterdayWhenIwasatthePianomyGuitarfelloverputtingitOutofTune -music or performance? eye or ear?

  Yesterday when I was at the piano my guitar fell over and when I played it moments later it was out of tune. The fall knocked some keys. I played some  tunes on guitar later and I was
1. trying to play,
2. talking  about how to perform the song that I was trying to play
3. trying to retune at the same time. I got confused and completely lost my poise, my ear and ability to be in tune.
It mattered to me intensely that I was in tune. Of course it’s part of the humour of the situation that I am out of tune; to the performer’s eyes its funny, the more intense I am the funnier or it doesn’t matter, but to the listener’s ears it’s horrible. I can play to the gallery and make the performance ‘funny’, but I lose it musically. When in doubt make the audience laugh then I am reassured that they like me,  and that is more important than being in tune.

Maybe that’s why that scene in Altman’s Nashville resonated so strongly for me. To recap:

 A wannabe country singer, a young woman, comes to Nashville with dreams of making it big and ends up doing a freebie gig in an almost empty bar except for a couple of bored punters. Midsong, she realises that no-one is listening, so she stops playing, looks at the bored audience, and starts taking off her clothes- a striptease. ( that’s interesting- in my memory it was an empty bar. I watched the film again - it’s a big smoky bar full of drunk men- maybe it’s the appalling emptiness of the scene that has distorted my memory - the emptiness of the room becomes an empty bar in my memory. (3 hours later))

To me, it was the saddest, most humiliating scene. About wanting to perform askill to an audience with a dream of being applauded, recognized, appreciated, but that not being wanted so you go LCD to win the audience. its an excruciating scene. I felt for her. Moving from the musical performance where the ear is most important, to the eye, where spectacle is the most important - playing to the gallery - in her case bored men.

audiences are either ear or eye dominant
- if ear or music dominant  then being out of tune is excruciating.
- if eye or performance dominant, then tuning is irrelevant. As long as the performer keeps the audience on side.

Wednesday, 6 December 2017

gripping tensing and holding

Years ago, when learning dance improvisation, when improvising with a partner you were taught not to hold, not to grip- because it was fear driven - fear of falling, fear of momentum, fear of communication and gripping expressed nervousness, desire to control, to own; whenever there was  flow, gripping stopped, constricted, inhibited
"...follow the point of contact, don't hold on, stay relaxed,
no coercion, let go of thought of where to go next, l
let go of the desire to lead and be flexible to what is happening." 
if a fall happens let it, learn how to fall and recover, it was meant to be…

gripping tensing is  wanting to control, own. Desire to grip, to hold has many of the same attributes as  as the desire to copyright and market oneself as a holder, possessor of knowledge, a spasm of tightening, tensing
And letting go, allowing flow is similar to having a  non copyright, open access approach.

I hear stories of people wanting to  copyright things as their own- ways and means of unownable things like kinds of movement, actors training, ways of making music or traditions of training from Tai'Chi to voice work and see how the act of copyrighting, trying to own processes and traditions they have no right to own, prevents flow and prevents creativity. This  seems to inflate the copyright owner into becoming an untouchable expert. In order to copyright it helps to have a suspicious mind- assume that the world is out to exploit you,  the world will not celebrate and acknowledge your inventiveness, your wits, your nous.
Maybe having a risk averse approach inhibits play, discovery and invention?
A suspicious untrusting copyrighting mind
is the same as the tense gripping controlling body
which is the same as the mentality of the little nationalist who is scared of thebig bad world outside, scared of the other,.
Is this what makes someone want to build walls?

Yes, protect what's precious but maybe too much gripping and pushing away is not good.

Wednesday, 29 November 2017

Maybe all People

Maybe all people who ascend hierarchies and
crave position and power are inevitable liars, hippokrits,
And have to defend positions they don’t believe in
But then most people are hippokritts anyway
whether they know it or not
(Including lil’ol’ me)
Particularly if they pretend the world is totally rational
and makes sense

Tuesday, 28 November 2017

Monday, 27 November 2017

Living books

Books are just oblong inanimate objects.
Only when  holding attention of a reader do the thoughts ideas stories and images of a book become something.
There is an old spiritual idea that if there is no listener then music does not exist
A musician without an audience is nothing,
likewise  a book resting forever on a shelf gathering dust does not 
When it draws the attention of a reader,
when it gets picked out, opened and perused and affects the actions of a reader,
when a book is used, 
it lives.

Sunday, 26 November 2017

Still smile

it annoys me 
when people say 'don't worry'
about something that is screamingly obvious 
that they are trying to deny

 I'm not worried 
I can still smile
but I'm not going to pretend its not there

Sunday, 5 November 2017

Holiday in England

It is about 9:15am I am talking to 'Don', the  roughsleeping man from New Zealand for a long long time by the bench near his temporary bench top home by the lake in Regent’s Park  He asked me to go and meet him for a cup of tea later at the lakeside cafe later. I didn’t want to waste time. I had a long to do list that wasn’t that urgent unless I made it so and was thinking this is not a good way to spend my day but he seems fairly jovial. 
I go and have a cup of tea with him later in the cafe by the side of the lake.
He sits down outside.
I go inside and order a tea. 
He comes inside and says’ do you want something to eat?’ ‘No I’m ok ‘ I say, 
he insists and gets me 2 croissant filled with ham and cheese. I can’t say I’m not grateful.

He tells me that he bought a van to live in before he left NZ. It should be waiting for him back in NZ. He hopes. I don’t know what his true story is. Do I care? I sense a lot of what he is telling me is true, even though he monologues constantly. He trusts me. I don’t sense any threat from him, nor he from me. I feel he has chosen me as his confessor
 I ate and sipped my tea as I listened to him monologue: he is a retired professor, 68, I checked out the uni he mentioned: It rings true: he has deep vein thrombosis he tells me when I notice, shocked, that his right leg is purple, the skin is scaly and there is a bloody wound on his shin. Is the flight back to NZ on Oct 30th going to be Ok for his leg? He insisted yes and showed me his blood thinning tablets. Will they let him on the flight? He claimed his leg wasn't hurting, and all was ok. Was he denying his condition? was he likely to be stranded in England?  Compassion? Worry? He seemed to have it all figured out, he insisted and I believed him.
 His sister is in the security services, he tells me, and guards political heavyweights in NZ, both local and travelling. He mentioned both Clinton and Obama. He was brought up on a sheep farm: he talks fondly of his dad, his childhood, he doesn’t mention his mum. He knows a lot about being at sea, sailing from islands in the Pacific Ocean to NZ. He definitely knew how to survive, how to rough it, he was neat, he slept on benches but always tidied away the cardboard he slept on, taciturn and polite, talked about the good people and bad people he had met in the park - he referred this time of rough sleeping in the park as his 'holiday' and was surprised how nice most english  people were here - his impression of the English he had met in NZ is that they were very snotty and distant, not what he had found here, but occasionally when annoyed by the English he resorted to ‘we helped you guys out in the war. And lost a lot of lives.’
He remarked of boorishness and officious little Hitler of some park security  at night. And he berated a nasty woman in the cafe  who told police he might be an 'overstayer' - someone who stays beyond the dates specified in their visa.
He stinks, he thinks it is just his feet but it’s  him, it’s partly why people leave him alone. He amiable, homeless.and smelly. Olefactory self defence. its why I don’t want to go within a few feet of him. He honks. His smell lingers. I still get occasional whiffs. He is going to the barber today to have his beard cut off and head shaved, a preparation for his trip back to NZ on Wednesday 

When underground once and he was scared and didn’t like it, so he came back to where he felt safe: on a bench in the open air possibly the most beautiful spacious place  in london. Location location location! hotel developers would pay lots for a view like that.

The next day, in the afternoon, I bumped into him at Marylebone station looking all clean shaven scrubbed and smily. He hasn’t gone home yet. ‘I’ve booked into the Travelodge’ he said. I looked t him and then asked him round for dinner. ‘I don’t smell do I? I’ve had a shower and bought some new shoes.’
 I didn’t smell anything at the station but when he came round there was an aroma. He struggled up the stairs he said it took him half an hour to get his new shoes on. He seemed disoriented and withdrawn. It turns out I was the only English person who had invited him into their home in his 6 months in England . He told me all his family smell, they have smelly sweat he doesn’t like crowds; he panics and sweats when he panics. Then people notice the smell and look at him and move away, and he is lame and diabetic. He doesn’t stay long,he is awkward but grateful. He mumbles that he has to go. I walk him back to his hotel. I hope they let him on the flight and he gets home ok before the nights turn cold here. He said he is looking forward to going home. Mad? Probably. Bad? No.

Friday, 27 October 2017

Autumn Angels

So amidst dealing krappily with the krapp that I bin delt

 I take a walk and some pictures-

its nice out there,

and its good to remember that the nether world is full of hidden angels

 and it’s ower job apparently to make them appere in our world as we live. 

Rilke said that. 

But the shy etheral buggers generally don't.

Maybe we are blind

Meanwhile sun smiles on autumn

Friday, 13 October 2017

Near and far

Jedburgh. So it’s 3 am it’s dark I can hear the wind outside and I am alone in my parents house with a load of books.
 Feeling fragile and alone? Well not really ; I cannot feel alone and fragile because I feel connected to people precious  to me across the world who with strength and optimism are dealing with the effects of natural catastrophes: Pilar and Pedro in Puerto Rico Stephen in California with a houseful of refugees from the fire there and on the train up here from London I was talking with 2 young women from Houston Texas who seemed on one level very naive white Texan but were both nurses who had been working in hospitals in the city dealing with people impacted by Hurricane Irma. 
So who am I to feel sad for my plight? I have known this situation has been coming, and can  feel hard done by because  of my  ataxia, my teeth, my economic situation, not having seen my daughter, my parents my aloneness but really, count my blessings, when this world is suffering. Fires, hurricanes, plastic in the food chain ...I know we can only deal with our own situation but

Sunday, 1 October 2017

Why are we arty personnnes?

Ficktiones dreames and imaginings enable recoverie from warres, disasteres and shocke.

If we cannot imagine a betta future, how else is it gonna happen? 

The imagining, the dreaming gives energie and  focus to actiones 


 the number of times

 I go to contact on phone or computer 

a specific person about a specific thing 

and look for their address or a specific thing to communicate 

because I want to and  then I get  distracted by something else

into something else and a 'you can, you can' mentality- 

wasteful disillusioning and mind numbing

and then time has gone

and I forget what I was trying to do

Tuesday, 12 September 2017

Something survives from before

Just as things constantly change and  nothing is final, 

and there is always something pretend about revolutionary change, 

change that denies the past

there is always something left, something that survives of before

of previous culture, 

of previous way of being, 

whether a thing, 

A scrap of paper,

A belief,

A habit,

the wave of a hand

A breath

Sunday, 3 September 2017

2 Rats

Practising balance and stillness in the park- I was approached by 2 big  inquisitive rats this morning- 

This park has loads of vermin lurking. If your noisy they stay hidden and you'd never know. 

But balancing on one leg, the  stiller I am, the more nervousness rustling, rattling and rats I sense.

I am discovering the benefits of stillness and quiet - it is NOT being passive; it is actively listening. 

If you are making less noise then the world around you, 

comes out to play ...

Thankyou oh yukky rat

but stay away 

from me

Sunday, 27 August 2017

An Epic

Maybe I'm slightly biased but the love story of Gillian and Ralph Stone is one of THE great untold love stories, an epic spanning seventy years since they met just after the chaos of world war 2 through the second half of the 20th century, until now amidst the chaos of 2017.

Sunday, 13 August 2017

Families, seeds and flowers

Families expect domestic bliss and togetherness to continue for ever,

but familiar forms fall apart and the child leaves the family. 

Carrying the essence of what they know as a hidden seed,

 like a burr brushed past caught coincidentally and carried  on a sock.

It will flower sometime in the future

The child doesn't choose  its parents

Sunday, 6 August 2017

The Story of the Wandering Goodie

Do you see that tallman?' she said, as a doctor approached a nearby patient on nearby bed,
' he' she said secretively, 'is a wandering goodie'
The phrase 'This hospital is full of wandering goodies' came into my head.
I laughed at the thought - it sounded like guardian angels or wandering souls. I imagined these nomadic spirits wandering around the world looking for a place to help people and congregating around  hospitals.

Later, wanting to write more but in a quandary because she had triggered the image,
I said to her 'can we make a collaboration?'
 I imagined a story around the idea of the Wandering Goody.
 She inspired it but I would write it.
'You don't have to ask me to collaborate ' she said as she lay weakly semiconscious on her hospital bed,
she had probably forgotten that she even said 'wandering goodie'

Wednesday, 2 August 2017


You may tick more than one box if they apply. Think and be
Do you like tickbox questionnaires?
     Yes, but with reservations
     No but they are useful sometimes

Do you use tickboxes?
     Very often

Do you like yes/no questions?

Thats alright then isn’t it?
     I strongly agree
     I strongly disagree

Do you agree with this statement: “If it was always good i’d
be much happier”
     I agree
     I disagree
     I nearly agree
     I nearly disagree
     Nothing is perfect
Do you like it when things go wrong?
     Very often
Generally, do things chug along nicely for you?
     Very often

Do you want it to be perfect?
     Very often

And when is it perfect?
     More often if I worked at it
How often do you think?
     Very often
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How do you feel?
     I don’t
     I can’t explain

If I was to ask you an open ended question how would you
     An open ended question?

Are you positive?

Is this a joke?
You’re weird
Don’t be silly. A box is a box is a box
Do we know more about you than when we started this
     Yes, I feel robbed, naked and ripped off
     Depends on what algorithm you are using to assess the
     No, I am an unknowable fortress and mystery even to my
closest friends
     Who me? I’ve got nothing to hide

Complete the following sentence using one of the following
Tickboxes ________
     1)______  magically sum up what I was thinking anyway
     2) _____ are rubbish.Who cares? I just tick any box and
     move on
     3) _____are great because they distil all my thoughts
     into a simple yes no decision thereby circumventing
     much  angst and verbal diarrhoea enabling the assessor
     to see how  I truly truly feel
     4).___ are  a bit freaky because I don’t know how who
     is going to see them
     5)If you truly cared for me you would give me a big box
     like the one below where I could explain exactly how I
     truly am.
6) I don’t understand this form of question. I want a tickbox please (ok)
please read this survey aloud to friends
Please put any other comments or feelings in the box
Thankyou for completing this survey.
 Please return to jonijonjon@mac.com

3 photos



Sunday, 30 July 2017

with Mad People in Power

How polished and efficient it all is,
How trimmed the lawns are,
How lumberingly efficient the big bureaucracy is (well at least its there),
but how thin this veneer of civilisation is.
Is it sturdy? could it all just crumble?
What if ..it just stopped working?

30th July 645 am Sunday. oh what a beautiful morning! What should I do? If I had chickens I would give them a nice chlorine bath in the sun and sell them to a gullible country! Things to do on a Sunday morn!

Friday, 28 July 2017

Visiting Grenfell. No Photos

Although I live near, less than 2miles from Grenfell Tower and though I remember hearing about it at 4.30am when I awoke, while it was happening, I have never had an inclination to go there. I remember that morning wondering whether to go down and help, and deciding not to when I heard they were swamped with helpers. I had no idea of the enormity of the event, but knew there was going to be big reverberations about it. Today, 28th July, was the first time I had wanted to go near Grenfell. I had seen enough images of the burnt out tower. It was in the news again today -the police reckon they now have enough evidence to sue Kensington and Chelsea Council for ‘corporate manslaughter.' Today,for the first time I felt the urge to go there. 
I caught the tube from Edgware Road and travelled the 4stops to Latimer Road station. It only took a few minutes and I thought of my few encounters with out of control fire and fear.

I remember when I was 15 the church a few doors up caught fire in the early morning  and although I couldn’t see the window there was a red glow on the wall and my father shouting get up and get out the house!
I remember when I was a young boy being near a heathfire at Blackbushe Aerodrome  watching these wild flames consuming land and I remember being scared whether to watch or move as the wind blew the wild flames unpredictably.
I remember sitting by the warm fireside and hearth at home, staring into the flames of burning logs and learning  from my father how to build fires.
I remember  as an 11 year-old as schoolboy prank starting a small fire that got out of hand, setting fire to about 100 yards of railway embankment.
I remembered the last time of being in NYC in July 2001 and from the roof of our place on 2nd Avenue between 4th and 5th and seeing the top of the Empire StateBuilding  in midtown round to the two towers of the World Trade Centre and couldn’t imagine that those towers has less than 2 months left.

And now heading to Grenfell I had that same sick feeling only fire and tragedy can arouse. 
Coming out of the tube station at Latimer Road and looking up at the burnt out block, a familiar image but its always small in a newspaper or on a screen and it does not prepare you for the enormity of the looming dark presence towering above you and I couldn’t look without imagining the hell what was now such a still shel. That area will not beging to recover until it is demolished
The eerie quiet in the streets around, a lot of flowers, (some old, some fresh) yellow ribands tied round trees, railings, candles and lanterns in pavement corners knitted tributes everywhere, shop windows had hurriedlly printed pictures of people missing. the area had obviously been inundated with visitors who trampled and gawped - a sign saying ‘Please keep off- we’re growing a garden here’ the residents resigned sad and resentful with that tired knowing slow look. A couple of police officers walking slowly around. On a deserted street corner with the burnt out block behind them a tv crew and besuited reporter stuck out like an inevitable sore thumb. A man came up to me and complained that he couldn’t get close enough to get a good picture ‘I bet there were many good pics on the night’ he said not realising how gross he sounded  he used to work in the area he said. The sadness of the place was bigger than his sickness. I couldn't judge him. What was I doing there?I didn’t want to stay long, but I needed to witness this, I needed to  be there. I was glad to leave the area. It's sad and suffocating. I  returned to the tube to get out and directed a woman with a big bunch of flowers to where other had laid theirs.

Sunday, 23 July 2017

No Difference, I just have to be Better

 I realised this morning I have always been mildly Ataxic and unbalanced by others or drawn into their world and lost touch with my own world. 
Become disorientated, a bit clumsy, out of step.  
"That's just who you are"
The only difference is now I have  been diagnosed  with Ataxia and it is developing and visible. 
I cannot deny it, so have to be more conscious of my every move and how I survive as it becomes more obvious, as  I become clumsier, iller. 
In other words, carry on as before, but more intensely, less reactive more proactive, I just have to be better.

Wednesday, 12 July 2017

Feeling and Rationality

Even though it can't admit it,
  to be effective, strong and sane, 
rational thought and logic are a tool 
at the service of the  
warmth kindness and connectivity of the heart

Tuesday, 11 July 2017

Imaginary performance 1

What if …
 Everyone developed a syndrome where everyone thought everyone else was mad so they  moved away from everone else,
 refused to acknowledge anyone and became increasingly isolated. 
They felt better than anyone around them. 
Everyone thought they were obviously right and everyone else was obviously wrong
There were no conversations in public places. 
No strangers met, no chance encounters. 
The world of people was increasingly predictable. 
Whenever anyone said anything or did anything they were thought weird and insensitive for disturbing the quiet status quo
Loud voices, big gestures were sure signs of madness. 
What if …
Into this world came a man with a wobbly walk, a stutter, and involuntary twitches, a man who talked to strangers
What if  …
They all wore hats and veils and dark glasses, except the outsider ...

Saturday, 8 July 2017

Warm Ground

I witnessed a weird climate phenomenon: the air was a  cooler this morning, I wondered why I was wearing a T-shirt- there were goose pimples on my arms but  in the park  it felt warmer. I felt the ground, it was warmer than the air above it - the ground must have absorbed so much from hot weather over past few days- nachrul thermal heating

Friday, 7 July 2017


From diary in April ;
So I can suspend ego and be all holier than thou when learning something but when I achieve a certain level of competence, ego kicks in and I start playing to and finding any audience I can. Ay Ay Ay! the trials and tribulations of being a performer! where handling unruly ego is bound up in PRACTISING YOUR CRAFT, because your craft is training your body and becoming adept at communicating with an audience.

After  you've been trying and trying again and not getting better, the anxious thought comes in ' what a waste of time! Why not just give up you are obviously not meant for this others are much better but the only thing that makes you continue is ego determination ' now will ignore the anxiety and  carry on ...'

When I allow anxiety to reach me  I am unbalanced mentally, and that unbalances me physically, so I work physically on improving my balance. work on breath, mental focus on weight and movement There is no barrier between mental and physical. why is it so obvious to anyone who works with their body but 'woo woo' and hard to test to convince scientists and rational types. And so I  get calm. (Er yes but that don't do anything about my rent arrears.)

Thursday, 6 July 2017


Once you get to know them

Everyone is mad 

only some manage it better than others

or rather, everyone has their little madnesses, 

which with varying degrees of success and invisibility

they weave into their day to day living.

Sunday, 2 July 2017


It's the story about potential perceived but never quite realised,
A story of people, place and love
A story of frayed edges and bright ideas,
Initially  embraced,initially energetic but without the critical mass to push it through to transformation.
A story of love  that was right for them for their time and place
They created much, but who knows where their  creations may flower- elsewhere elsewhere
the world is big
Maybe there was always too much this, to little that;
who cares- it was what it was,
post-mortems make no sense the energy went,
and so I move on ...

Cheat or Real?

I go into a pound shop with my daughter and say ‘you can have anything you want’
Am I being magnanimous on a low budget or mean?
well its true that she can have anything in the shop and its true I’m poor.and its true that most of the stuff in there is er not great.,
and then Re acting: is is just  cheating and pretending? while others see it as a craft to perceive and  act as if there are other realities?
Other realities than the prevailing norm?
I am remembering years ago being introduced to this: '

Chuang Tsu dreamt he was a butterfly and when he woke up he didn’t know whether he was Chuang Tsu or a butterfly  dreaming he was Chuang Tsu'

and so is the creation of other realities and working out the steps, the whys the wheres the when, the how to get there, to be there - craft or cheating? Behaving ‘as if’?
Now in a world where everyone think there is an idea of ’Normal’, this act of imagining is more likely to be seen as cheating, shifty. Hence the phrase ‘be abit creative’.
The rich have always been able to create and live their own dream: that is what everyone aspires to- (but according to the prevailing norm) you have got to earn the right, (ie makes stacks of moolah) to live your own reality. Only the rich can live their own reality. Everyone else is dysfunctional.

In the naïve ‘safe western world, pre 9-11 world,  it was possible for blurred realities and for performance/theatre to be interested in it and make a craft of it. And it saw increased security as very big brotherish, but in a world of terrorism and increasing random acts of violence against the public, the horror of public beheadings and graphic new reporting, fears of any disrupting of the norm blurred realities are not wanted,;theatre reverts to entertainment, unreality, fantasy safe escapes in safe places, it retreats from public spaces into the safe boundaries of theatres where the audience knows the contract, while the public outside don’t have their feathers ruffled. Blurred realities and looking at how they are created is seen  as underhand; shifty and not trusted or wanted.
The prevailing norm is for clear lines. I cannot knock that - it is the world we live in: a more dangerous world, a more orthodox world, a more ‘normal’ world. 
As an idealistic young theatre student I believed that theatre was reality and could trigger people into wakefulness, nudge the world into changing
As an older person I know that theatre in this society, no matter how seriously it takes itself, is entertainment., and this world, this dangerous, serious world doesn’t like being tricked. Society wants to creats sureness of ground underfoot.
The expression ‘as if’,ican be taken two ways, serious or cynical -
Serious: ’act as if what you do makes a difference. It does’ (William James),. 

Cynical: It has become  ‘a slang expression used by unimpressed teenagers implying that something is far fetched or never going to happen’(www,your dictionary.com) -said sarcastically with a tut or roll of the eyes,’as if’


I can't hide the fact that I have been diagnosed with genetic Ataxia. Thats why I walk funny. It is such a part of my life now.
my day to day existence whether I die this year or in 20 years is determined by it.I  can only do what I can do. Obviously, but have been pretending otherwise for too long. Denial is not an option. I have to admit it to get past it
from April diary

So I can suspend ego and be all holier than thou when learning something but when I achieve a certain level of competence, ego kicks in and I start playing to and finding any audience I can. Ay Ay Ay! the trials and tribulations of being a performer! where handling unruly ego is bound up in PRACTISING , because my craft is training your body and becoming adept at communicating with an audience.

But then... what if all human endeavour all scientific discovery achievement of any sort, empire building that requires big concentration and attention is a monumental act of egomania? where you somehow delude yourself that  what you want to do  is somehow for the common good?  Is anything you do,  an  assumption of power, duty, responsibility, is it inevitably a deluded egotistical act? Or are you recognising other people's helplessness and a desire to help? What a fine line.This is why I am in rent arrears and in danger of losing my home. This is  the path that relearning to juggle takes me down.

After a certain kind of failure, when you've been trying and trying again and not getting better the anxious thought comes in ' what a waste of time! Why not just give up you are obviously not meant for this, others are much better' but the only thing that makes you continue is ego determination ' no, I  will ignore the anxiety ,and carry on ...'
Yes when I allow anxiety to reach me, or events unsettle me, I am unbalanced mentally, and that unbalances me physically, so I work physically on improving my balance. No separation between the mental and physical obvious to anyone who works with their body - work on one and it works on the other but 'woo woo' and hard to test to convince scientists and rational types. And so I  get calm physically. This is my future. (Er yes but that don't do anything about my rent arrears. No not yet...)

Did I develop this in 2002? I had cramps and seizures in bed and didn't think anything of it, and didn't go to a doctor.  - according to something about SCA 17 there is lif expectancy of between five and twenty years after onset so if my  onset was 2002, twenty years would take us up to 2022- t years from now. This realisation has taken the wind out of my sails. I want to find out more.  I

Easter Monday.4.30am awake worried about mortality and notice to quit- how to convert my fear into a simple request for a bailout to cover rent arrears dental work, water cred cards, website
Shit hits the fan. I want family to unite

930 pm I am wanting sleep and bed more and more. My bed is comfy I like being here
I prefer it to facing the world and doing what I need to do . I don't want to be alone

April 18
The joke this disease is playing on me is that I don't know if will get bad tomorrow or in 25 years when i am old anyway. Ataxia- loss of control, yes in more ways than one. Common sense says carry on as normal, but I cannot with the knowledge of what I have got - it is increasingly going to determine my choices. Do I really go for performing and music while I have use of my limbs? and what kind of music. Now it makes sense for me of being in interested in music and healing - why I was drawn to the story of Tarantism, why I did Opal Lorbin, way way, many years before I knew why.

Yes Ive joined the Ataxia club; got my Ataxia UK club card but have just left the bigger club of everyone else able bodied.

Financially managing but on a precipice

I don't know if I just attach more significance to every symptom now but I worry it's getting worse; I had 2 small pinpricks in my left foot that made me jump and I think the numbness in my toes has spread. I used to just shrug these things of in a cloud of unknowing.

Watch when relentless optimism swamps clarity and reality and you end up accepting the bad when you could improve your situation

21 April

I feel I am in a dream where the world around me is the same, the street outside, the flat inside, the sky, the sounds of the city, but I am changed;