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
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
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;