A mixture of pieces of writing, some recent, but many older. Some can be spoken aloud,, some from my diary, some are fragments, some are rants responding to things in the news, some are about performing, some are stories.
Something funny has been going on with my legs for some years and was becoming increasingly obvious to others, I can't run, I fall over occasionally, I lose balance if I look behind me, I am increasingly jumpy, and I was fed up with not knowing, doctors didn't know what it was. and then I was asked at one appointment,
' Do you want to know you future?'
It sounded like some oracle you have paid to consult in a fairground, not a sober request from a doctor in a day clinic in a busy hospital. I was fed up with MRI scans X-rays electrical nerve tests blood tests and doctors staring into computer screens and telling me monotonously that 'they couldn't find what was wrong with you Mr Stone.'
So I wanted to know. I told them to go ahead.
A few weeks later the results came back and I was given an appointment with a professor at the National Hospital for Neurology where I was told I had a slowly developing incurable neurological condition SCA17 (Spino Cerebral Ataxia). At first it was great to know, get an Ataxia membership card get my pack through the post, see a DVD of other people walking funny like me...
But then I realised what I had. I read an article where the life expectancy was talked about : ' people with sca17 rarely live beyond 60. I am 58 . I can look forward to losing all sensation and use of my limbs, slobber, slur my speech, have uncontrollable spasms.... Lovely! But the doctor said my case was mild and they really didn't know when it would develop- it could be soon or it could be 25 years off, and they might find a cure meanwhile. There is a lot of research happening. This disease has a sense of humour it really is a bit of a tease. The joke of the disease is:
I don't know if It will develop this year or when I am 75. Right now it is obvious in my walk, but not in my my hand eye co-ordination which is good. It is not obvious in my speech - it isn't slow and slurred. No difference really! just don't want to waste time now- its precious
but I somethings are clear - My diagnosis 'a very rare form of autosomal dominant cerebellar ataxia' I am scared, I wobble, I fall occasionally, I have withdrawn from the world and become extremely careful.(If you want to know more go to ataxia.org or ataxia.org uk and there are videos on you tube, or talk to me.)
Although its hard to accept, I think its better to know about it. If I don't, I'll worry, and better to worry knowing, than worry in a cloud of unknowing. I've done that for years-I have known something's wrong but I don't know what',meanwhile I got on with life and found a precarious balance that enabled me to survive. If you know, you can do something about it. It is, and increasingly will be, a part of my life now, so I can cannot deny it. Some say denial is a good thing- hmm maybe partially, but I cannot deny the diagnosis, but I will deny the prognosis thats my line. I intend to eat well and stay fit,do lots of body work weave it into my work, have always been drawn to music and breath and movement, balance and its relation to healing, now I have avested interest. I want to be closer and helpful to others who have ataxia. I am currently in good health and able to do everything but run and jump, I am seeeing a physio and keeping fit and just have to get on.
I hope ataxia helps me to become a better person and accept and work within my limitations. As famous doctor Osler said, quoted by Ollie Sacks said, 'ask not what disease the person has but what kind of person the disease has'. Only time will tell how I live with it. It is now part of me I hope I can learn to live well with it.
LOSE POWER GAIN SANITY - WHO IS BLUFFING WHO?
The argument re nuclear deterrent is so old - come on - everyone knows that if you say you are willing to press a button that will kill millions your are bluffing and relying on the other side bluffing, Unless your deranged enough to kill millions ..,
So why don't both sides admit they are bluffing the other and save millions, de-escalating imaginary tensions,dismantling their weapons. So what you lose in the power to kill others and bluff, you gain in sanity and understanding
I want to make a performance about the Behaviour of Experts, their behaviour, not their knowledge. Experts are often under very dubious attack by right wing politicos and populists- I am not part of this but want to understand why it happens.
Maybe because often they have lived lives inside institutions most of their lives, away from everyday life. They are protected and cloistered by the institutions that foster them, who deal with the nuts and bolts of living while they get on with studying. There is often an antiquated whiff about them, something childish. People look at them and make quick judgements about them-
‘What makes them so special? why them not me?’
Often what the expert recommend flies in the face of orthodoxy, contradicts politics, politicians need them but also don’t trust them, for experts have no respect for political expediency. For an expert, their knowledge, their expertise is their power, their solid ground. To focus on one thing is to turn away from everything else. From the politician’s view they are not one of the so called ‘normal’ people politicians are meant to appeal to.
Yes, a performance lecture by someone who assumes they are an expert in expert behaviour
Straight from my diary:
So yesterday I posted 'eek! I'm 58' on FB in angst at realising my age and loadsapeople thinking it was birthday, wished me happy birthday. I enjoyed the palaver and positivity from friends- it kept my mood up for hours and even after I told people what had happened they still carried on - some, who had read the thread knowingly, but most genuinely thought it was my birthday.
So despite appreciating what was happening, I wonder what is going on here. Most rush through FB going like like like and only those with time on their hands or the lonely or the super quick and sharp dwell for enough time to read and figure out what's going on. That is the reality of FB and most social media it is immediate, non literary or visual, it enables one to engage(or imagine engagement) with others while staying within one's own world from the safety of their aloneness in front of the computer screen.