Tuesday, 12 June 2018

Apparently ...

Apparently if you smile you run faster.

That's fine, only I can't really run any more 
so why should I smile?

'yes but maybe if you smiled...'

Monday, 4 June 2018

Blogpost for Ataxia UK


After genetic testing, I was diagnosed with SCA17 after genetic testing, in March last year. I have been coming to terms with my diagnosis since then and going through fear (I am 59- a fact sheet informed me that SCA17 people rarely live beyond 60) to acceptance to action.’Its best to deny you diagnosis’ a friend erroneously advised.There were various Ataxia FB groups I joined - its good to be in touch with other who are going through some of the same  things. As it is degenerative and currently there is no cure, then Ataxia in all its forms is  understandably depressing.
For me coming to terms with my diagnosis has been about maintaining mental balance even on bad days and staying buoyant in my spirits and physiology. 
There are many stories of humour and bravery by Ataxians but understandably, a depressive energy sometimes surfaces on those forums.There is sometimes an expectation that doctors will deliver a miracle cure and meanwhile, Ataxians are told to exercise and diet. That is treatment as much as any drug or expert advice. The only way I can come to terms with this dreadful diagnosis is to accept it and self manage in collaboration with the doctors. Even if the doctors know more facts, the Ataxian has to deal day to day with its effects. You  and the doctors both are experts, so is your family or anyone who knows you and helps. Its a collaboration but you,  the Ataxian has to deal with it. Live with it but don’t let it stop you living your life. If you are prescribed exercise and diet as the best thing for you -yes thats treatment! go for it! Its likely to be better physically and psychologically than waiting helplessly for a miracle drug to come along. That may or may not be going to happen— if it does its wonderful - but it doesn’t seem wise to rely on something that isn’t there yet. Learning to stay buoyant and optimistic on bad days is treatment. Anything that makes your situation more bearable is treatment.

Making a new show has been part of my way of coping with my situation. I have been wanting to do this for a long time. My diagnosis with Ataxia meant I’d better make it soon while I still can.This is just my story; everyone with Ataxia will have their own story to tell; of how their Ataxia develops, how they coped, how their family and loved ones coped, how they adapted, denied or whatever. Although their are similarities of symptoms across the range of Ataxians, no -one’s stories are the same, and everyone needs to be heard. I am lucky, in that my case is milder than some and I am able to articulate my experience and put it into a show, but remember that every Ataxian, however ill they are, those unable to speak, those whose condition has made it harder to communicate, have as rich particular, funny, varied and personal story to tell. 
Wot drama!  


if you have insight
you can use it cynically
and reject most things
decide why not and be separate

but maybe your insight 
enables you to take a view 
where you can see the next step

Saturday, 5 May 2018

Pelotons become Flocks

 This sunny blue morning i got out my house to exercise, get calm, clear my fuzzy head and had to cross a road to get to park but could not because of a huge peloton of sweaty men, 30 of them bombing round on bike fast. The paunchy sweaty pelotons are getting bigger and bigger and beginning to resemble flocks of birds.

Thursday, 26 April 2018

I left house at 6.30am and as I walked down the street I overhead some passers by- trendy girls on their way to school, talking in English hip hop language but posh-like’get down with the Streetz ‘we iz’ mixed with ‘ok yaah’. But our voices say where we’re really from... or maybe it’s aspirational? Dunno but posh English hip hop it most definitely was.(language change and development is unpredictable, always surprises and cannot be legislated or controlled, but...

Saturday, 21 April 2018

Not sure why I am posting this ...Habit? Hmm a stab at futurology? Who knows?  Here goes...

Everyone admits they exist simultaneously in parallel universes urbanely but will not talk from within one universe about that universe... no-one wants to admit who they are. 
Maybe old versions of what were thought of as realities of who one is no longer exist.
It’s difficult to find the language.
Everyone lives in several bubbles and those that believe in bubbles inhabit a bubble of their own

Friday, 13 April 2018

Be More Decisive than your gadgets

Part of the way humans allow computers to get the upper hand is by being floaty and indecisive; 
Mindless surfing means you get led by algorithms that will get increasingly accurate. 
They will develop far quicker than a floaty habit blind human.
You are an algorithm with heart and smell