Saturday, 15 December 2018

miniature imaginings

If my desire is to become a powerless performer whose judgement and intelligence is not taken seriously I have already part written the script. Maybe I have failed. So what?
Echoes of that film I saw about a film director building a city that was the contents of his imagination and falling apart as others wouldn't buy his vision-  and a Belgian theatre piece I saw many years ago, about an imaginary model world in miniature created by a man who could have been a Dickhead Dictator Director, but chose not to build a hierarchy  and bark orders, so he made a miniature version of what he obsessively saw in his head that delighted many and upset no-one.

Friday, 14 December 2018

When head and heart act together

Whatever I am feeling, it won't change the logic of a potential action, but the fact remains that up til now, feelings dominate my motivation- if I am not feeling it, even if its a sound idea, I won't do it. Is that a bad thing? Dunno. It’s head against heart and head loses(despite it’s constant  activity and the way that chattering thought dominates my moment to moment consciousness). 
But when quiet heart and calm head act together that immovable determination is found

Thursday, 13 December 2018

Wilful forgetting becomes habitual forgetting.

Everyday I work things out afresh, riding roughshod over what I’ve ‘decided’ the previous day, which I convert into an onerous todo list. And then, when I look at list to see what I should do, I lose the reason to do the action on the list. But the obligation remains, weighing heavy on me as a meaningless chore that must be done, so I leap on the freedom and freshness of the thing I’ve just worked out and forget the list and wander further away from coherence. I do this everyday! Bluddyhell!
It’s always ‘feel good today  and defer obligations for tomorrow when I can forget them or avoid them when new optimistic things come along
So wilful forgetting becomes habitual forgetting.

Whatever I am feeling it doesn't change the logic of a potential action, but the fact remains that up til now, feelings dominate my motivation- if I am not feeling it, even if its a sound idea, I won't do it. It’s head against heart and head despite it’s constant  activity that dominates my moment to moment consciousness loses.

Thursday, 6 December 2018

Stillness, Shouldness and Creayshun

 It’s easy to mistake stillness for negativity. Some feel emptiness is boring and needs to be filled with action but very often what, at first seems to be empty is, if paid attention to, listened to, full of tiny movement, little sounds; be still and let the action emerge ...
‘that’s all very nice, but it ain’t gonna pay the rent or feed my family, is it?’ 
but but...I...I...I have no answer to that position but.. er... I am assuming you to be in a situation where you have the luxury of being able to function beyond your biological imperatives. 
I know I know, I should be different. But I kind of agree .. For me, when I am looking at emptiness I am looking at a depressing void, and what will stop me being sucked into that void is action.  Whether it’s an idea, a distraction, a child or dog, a real life drama- a problem to solve, someone to help- something outside the void. I wouldn’t make a very good monk. I should like solitude but it makes me feel alone. I can't stand the stillness without hearing the shouldness. 
But maybe that shouldness is a wonderful thing, the place from where imagination emerges, the birth, the mirth of all creashun. Bluddy Hell

Saturday, 1 December 2018

Difference between Doubt and Undermining

I just had a minor setback. kept me awake. I should be able to shrug it off and move to next step. 
Early morning mind whirs ...There has to be a difference between DOUBT and UNDERMINING-let's draw the line: Doubt questions but strengthens, UNDERMINING judges and weakens. DOUBT asks 'Am I doing something wrong? How could I do better?, UNDERMINING says' You ARE doing something wrong! stop it! Stop kidding yourself! give up! do something else!
DOUBTING is present. Its a whole process that concludes with a 'so if that's so, what now ...', UNDERMINING is past. It says 'you've made a mistake. Admit it! Give up!'
The past is dangerous territory. The present is always fertile.
UNDERMINING is negative. its stagnant. It stops you doing anything
DOUBTING can be positive, it can happen while you are moving
Right .. get up get out. must get going, its my 60th birthday soon! Lovel

Friday, 30 November 2018

Questions asked by Ataxia UK for an article in their magazine. Their questions (in bold), my answers



You’ve done a wonderful job in capturing mind-set as treatment; I wonder if you could write a bit more for us about how having a creative process/hobby might help people with ataxia reach that mindset? Unfortunately not everyone with ataxia can control their worry or fears that come with the condition, so it would be lovely to have something to share that’s worked for you.
In terms of physical symptoms I am lucky compared to some with Ataxia - I limp, I use a stick sometimes but I am not in a wheelchair, I fall sometimes but am not in constant pain. I used to be very fit and run a lot, but I often can walk unaided, I would hate to suggest that anyone can deal with it if they set their mind to it, but whatever you condition, mindset, focus is important. 
Each case of  ataxia is unique and each person's tale about how they deal with this horrible condition is a different and individual story that deserves complete respect. All I can do is say what works for me. It is very easy to become despairing or turn to alcohol or medication or get frustrated at doctors, or expect a miracle cure or rage at the moon to distract you attention from your Ataxia but making this show- unpicking my thoughts, playing music has for me provided a welcome distraction from dwelling on my Ataxia. 
Making this show, practising a musical instrument  working on balance and co-ordination and clear speech works on strengthening the things that  Ataxia acts to disintegrate. But any hobby, any activity which takes your whole attention has got to be good thing. If you think of Ataxia as a bloodthirsty destructive animal that sees you as prey and  wants to pull you into its grip and make you feel like a helpless victim A hobby or activity counteracts this and helps you escape, focuss
You can't deny  Ataxia but if you accept it  as part of you and  then focus on what you can do, physically and mentally you are much better equipped to deal with its debilitating aspects.

·         What musical instrument do you play? I sing and play string and keyboard instruments

·         How long have you played it for? I played classical guitar when young, bass guitar in rock group when a teenager and then after studying theatre and dance and being a performer and deviser of performance for many years, I got into singing and making music with other dancers and performers in New York and London

·         Do you write your own music? I make music! -don't really 'write'music, firstly because for me its always about  the physical activity of making sound and listening, and secondly cos I am largely self taught musically. I like working with people hearing their voice hearing what they can do and building things around them.  I have composed ('made up? ' music for the bands I have been in and made scores for theatre and dance . Now I make my own songs -  I have about 30 of them,  I try to remember them all in my head and fingers but when I practice one I'll forget another - that when I really wish I could 'write' music! 

·         Has ataxia affected your ability to play?  Fortunately (touch wood) the ataxia has not affected the touch, movement and sensitivity of my fingers and clarity of my voice although I do need to concentrate harder, but when I was diagnosed, they did not know if it will develop soon or over the next few years. It made me very nervous and scared at first and want to play as much as possible before my motor activity really degenerates

·         When were you diagnosed with ataxia, and what type? Did you have any symptoms beforehand?  My diagnosis is SCA17, and I was diagnosed after genetic testing in  March 2017. I had  physical examinations, X rays, electrical nerve tests. PET scans, MRI scans before they finally diagnosed me. I limp, don't like stairs crowds or noisy places and fall over sometimes. I have always been a bit clumsy, easily distracted and had a short attention span, I used to run and be very physically fit and active but then I am not young anymore, so maybe its partly just getting older.

·         Tell us about your show: what did you get up to, and how did it make you feel? what topics will this show cover? 
It tells the story of my diagnosis and use of  a walking stick, riding abike succeeding then falling, gaining confidence, losing it.. its about using the time and energy I have and includes many of my own songs using words, whistles, humming, vocal sound and invented languages. I wonder if I am dramatising just by talking about it, but given the dilemma of either denying it or on one hand or allowing it to depress me, I believe the only path is to be conscious of it and then carry on regardless. I am waiting to hear about funding now. I believe everyone  involved in live performanceshould be paid for their work, that includes performers, tech staff, lighting and set designers, costume, and management. we are all professionals, giving expertise and time to making the show happen in front of a paying audience!

·         Do you think creating something like you have has helped your mind set and helped you cope with your ataxia diagnosis? Yes it has helped me come to terms with my diagnosis, examine my fears and stopped me plunging into the pit of despair,. Hopefully it has also raised lot of laughs and moved a few hearts. A diagnosis of Ataxia is a frightening thing and can easily draw you into despair. Making this show fights and lightens this, and raises awareness of the condition  While I have my faculties ( sounds dramatic!) I want to make something people can remember.




Falling off my bike/ 'Risk Assessment'

I fell off my bike a couple of days ago and cut and bruised myself. What has has me falling off my bike got to do with risk assessment?
I was full of physical confidence  to get over my Ataxia so I wore  tracksuit trousers and sweatshirt and thought 'cycle to park and get strong' None of this physical and mental safetyfirst timidity and so I got on bike. I was stationary at a junction with busy road, waiting for aspace in the traffic near Balcombe Street and fell sideways inexplicably and lay in road for a few seconds, I tried to get up, thinking I haven't hurt myself really and I tried to stand up from road but couldn't get up, my brain sent message to my arms and legs to get up, but they didn't respond a nearby pedestrian ran over to me as a number82 bus avoided me, and helped me to my feet, I felt a little silly and thanked but assured him I was ok, but as I walked on I thought I had better get checked over. I locked my bike up- I wasn't going to cycle again and went to an nearby co-op supermarket and asked to use their first aid kit.  I rolled up my trouser leg to reveal a very bloody knee -the fall had knocked  off a scab from my previous fall. I was cleaned and bandaged up by the bloke in the supermarket. I felt well lookedafter and limped out of the shop, confidence severely dented.
I haven't dared to get on the bike since. That was 3 days ago and have been thinking about how to get confidence  back but without physical risk.
Many achievements come from just going for it and ignoring worry and caution. I have found that when I  list dangers the sensible option seems to be don't try anything. How do you draw the line between a debilitating worry and a genuine risk?
Maybe I can get fit and strong without the 'risk' of cycling. But  a voice in the back of my head cries 'wuss' at me,  but it is always possible to be out of you comfort zone, extend your possiblities without risking fragile flesh on tarmac. Brute reality: flesh is softer than tarmac. I am mostly fine but unpredictably lose all coordination and balance.
so much as though I love hurtling along carefree on a bike, cycling for me is off the menu, but I hope I don't become too timid.
Hmm maybe I should go into risk assessment - "Assessing risk for a big company is easy. Its like falling off your bike ....'