Done and dusted. Onward and upward

Well Mohammed has been to the mountain and returned from whence he came. Two and a half hours of going through every tiny detail of my life from when I was 3.....50 odd years; scraping about under my carapace until I feel like a crab shell in the dustbin of seafood store. Hope he got what he wanted and, no doubt, though he was a very nice fellow he will now go back and write what he would have written even if he'd never met me face to face i.e. that if I just have the right sort of CBT and the right sort of GET then I can be reinvigorated ready to resume my career and pay my own bloody pension premiums. We shall see. Thankfully there are some trick-cyclists who recognise that M.E. is not a psychiatric disorder, or depression or all about fatigue and I thank Dr Speedy and good old Nasim for pointing me in the direction of this psychiatric sage. Trouble is she (the sage trickie) is in Canada and that's a bl**dy long way for someone with M.E. who finds it mega hard to even get to Ipswich U.K. Never mind. All part Of life's rich tapestry....cliche, cliche, cliche.............

On a much lighter and more positive note I would also direct your esteemed attention to a very uplifting project. The lovely Kirrily Anderson in (I think,) Australia has brought together a whole bunch of creative types who also happen to have M.E. and gathered their work into a very well-produced online magazine/book. Take a look at Creativeforasecond and you can download a free copy for browsing or buy a hard copy. Great positive stuff and more of what we PWME need.

Fear, foreboding, loathing and courage

After my last post I received an interesting post from the splendid Ana who paints the most beautiful images and also has an interest in dreams and myth.

I was thinking about the recurrent dreams of my life and, in particular the one I had as a child which, amongst other things, involved large machines. Ever since I have had a kind of fear, dread, almost phobia about large machinery. I can deal with it but I have to really steal myself to be near ships, diggers, planes, the sorts of machinery they exhibit in museums etc etc. They really unsettle me and fill me with a kind of foreboding.

A few weeks ago I was involved in quite a long discussion at Seats for Landing about the pros and cons of various, apparently miraculous cures for ME/CFS which involve retraining the way one views the possibility for recovery, action etc. This led to a discussion in my head about the extent to which fear and foreboding prevents PWME from moving on.

For my part I honesty believe that the mind and body are inextricably linked and that, whilst the symptoms of ME/CFS are biologically/physiologically/neuroligically based, there is a point at which the mind can enable one to move forward a little further. This is not always easy or possible, but there are times when I have believed, in all sincerity, that I feel too ill and too weak to do something and then, for one reason or another, have had to try and found it was possible after all.

I cannot believe that my mind alone will enable me to overcome my physical symptoms to the extent where I could once again work a 50 hour week, travelling the length and breadth of East Anglia, runnning workshops, leading training sessions, making new artwork but I am coming to a point where I think I have to challenge my own preconceptions about what is possible for me and look towards activities and challenges more positively.

I have no real conclusions to offer but just wanted to share my thoughts. When I look at other people with M.E. (or other disabled friends) who have achieved their dreams despite their condition, I look forward with hope. One such friend is the Dutch artist Corina Duyn. Another is Amanda and then there's Michael and Azirca, Signs and NMJ . They all hold fast to their creativity and hang on in.

Missing You Already.....again

Last week I wrote a piece about the losses that are encountered by someone who acquires a disability. Today I received a comment on that post from my 'cyber chum' Amanda which I found very moving. This has encouraged me to return to the topic.

Here is part of what Amanda said:
'.........when I visited your blog and read this post, it stirred up so many feelings.................
Sometimes I think I live in denial. It is great to create art, but when I lose touch with the fact that I have cfs and what it has done to my life, I do find I can mislay my sense of wonder at what I do have. .........'

I think it is terribly difficult to be a creative person and have a chronic illness or acquired disability which holds you back and changes your whole way of being and working. When I first became ill again, 7 years ago, it was impossible to even think about creative endeavours. I simply existed on a moment to moment basis and prayed that I could get through another day without too much pain or suffering and without being too much trouble to anyone else. As things subsided I'd have vaguely creative ideas but no possibility of actually carrying them out. Over the years my condition has come to a point where I am 'up and down' but generally I manage in a limited way.

Creatively, having a chronic illness like ME feels to me like driving a car with a limiter attached. Before I was ill the ideas came thick and fast and I would have difficulty in getting them down fast enough. Being creative was about a rush of ideas and activity and then the honing of that initial exubernace so that something new could be formed and delivered.

The ongoing recovery from the worst days of illness have heralded the odd spark of inspiration, but now there is no rush and when I try to write down ideas the process is hindered by loss of memory, blurred perception, 'foggy' thinking; never mind trying to get ideas down before a new one comes up -- I can barely retain the one idea long enough. The energy to execute the idea is different too. My old way of working was very focused, very quick. There was a spontaneity, a freedom like flying. Now I'm more earth bound, more shackled.

In the end I suppose it's about trying to find new ways of working, new ways of being in the world. I think about other artists (famous or otherwise) who have had to contend with disability: Monet with his ensuing blindness, de Kooning with Alzheimer's or even people I know such as Corina Duyn or Michael Nobbs who have found ways round their ME to move forward.

It's an ongoing struggle to maintain balance between energy, reasonable health ( such as it is), domestic and relationship responsibilties and the creative urge that won't go away and needs to be fulfilled: the need to express something about how it is to be me, living this life.

As Amanda says:'.............my happiest times are when I manage to strike a balance and not go off the deep end, it seems I need to keep returning to it over and over.'