Stonebird

It has been a beautiful Summer's Day here, my wife, Linda, though has spent it in the dark, behind thick sound proof curtains.  Her hypersensitivity to the environment has reached frightening levels . The scandal and injustice surrounding ME is a deep pain. We can only pray that maybe Severe Myalgic Encephalomyeltis Understanding & Remembrance Day next week, August 8th makes some kind of impact. To that extent I have just launched Stonebird's webpage : http://www.stonebird.co.uk/understand/html/index.html

I ran down the garden, jumped on a bench, punched the air yesterday - I had just qualified, after a year's study, as a Life Coach !! Very exciting, although physically limited by caring for my wife, there is no end to the creative ways I can build upon this experience. Wonderful, life changing learning, so overjoyed I completed the course.

Out soon

I am currently undergoing a course in Creative Computing, learning how to use an electronic sketchbook called Processing :http://www.processing.org/ . This is a film of an interactive App I have coded - it sets out to convey the passion of our often lonely stand for truth - we have been fighting for the last 20 years - alongside the horror of Severe ME. As the user clicks and moves the mouse or their finger about, the background pictures change, multi-coloured, rotating  words convey two messages : "This is love's one last stand" and "This is a stand for Severe ME" - above all though that little solitary bobbing head figure will never be extinguished - no matter how much you smear him about, he emerges still nodding, still singing his song; it's  all you can do !!  The soundtrack plays two songs- if you click the mouse - Loves Last Stand and With ME, just coming in underneath.

One of the ways I cope - survive as a carer, is through ongoing learning. But have I overdone it this time ?  Right now  I have a Life Coaching course to complete - the deadline looms, I have also started a demanding 6 week Creative Programming Course - yesterday, half way through,  the first assignment was due...plus  I am working on the revised version of my Severe ME book. Yesterday was  a day of screaming torment,  for Linda. As the deadline came and went I was a mess. I could not string together a single line of code. It was an awful place to be - on top of everything else  I badly wanted to give up. But Linda was able to perceive  that I was coming from a victim , not a true authentic position. Her wisdom, courage and encouragement pushed me on and over that concrete wall I had hit. Incredibly I  was able to sit down and write some basic  code that graphically, dynamically plays one of my songs with swirling, multicoloure...

We live in an impossible  world, normality is beyond us,  we are tortured by the simplest interaction Normal things cause us pain, deterioration, risk harming us severely We need extra help yet the price of help is often too high to pay We cannot access it for the people who would  help would hurt us with their unawareness and lack of understanding How can anyone truly understand how much pain they can cause when a whisper drills into your brain and sends pain spiders crawling round your head ? When any loud noise is a torture that feels like you are being hit  repeatedly with a sledge hammer. When banging,thudding, drilling,screeching causes your guts to go into trembling jelly spasms too indescribably horrible to convey ? When a simple wiff of perfume,deodorant  or washing powder leads you to feel utterly sick, vomit and give you a massive instant headache and intensifies your body pain unbearably? How could anyone p...