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.'
3 comments:
Yes, this is one that won't go away, will it? I find I can accept almost everything else but the fact that my creative output has been so limited by this illness. The will that I might have used for creative endeavour has had to be employed to force myself not to do things. And of course everything slows down, becomes less limber with lack of use.
What has, I think, got me through to some extent is continuing wherever and whenever possible to keep focussing on things that I love. I don't just mean obvious things like singing, painting, writing that perhaps take too much strength when one is very weak, but the small rituals of lighting candles, painting eggs (your photos reminded me), pressing leaves, putting conkers on the window sill. For me, some kind of regular writing practice has been significant. At the time of doing it doesn't seem so, it's only after years have passed that I realise the regular notebook scratchings have stood between continuing as a writer and letting it go. I don't know what the equivalent practice for an artist would be. But taking photos, being aware of the power of image, being alive to small particulars - must count as a kind of practice, as long as you give it a certain honour and respect. Too often we belittle the little that we do because they are not things that bring worldly recognition or reward. We should know better though, shouldn't we?
Yes, I agree. The only way to feel any kind of achievement is to make tiny steps --- something sustainable ( Michael seems to have got this down to an art). That's why I do things like the eggs with the children, take the camera out on walks with the dog etc. But it still bothers and mithers me that none of this (or hardly any of it) comes to much. It remains all bits and pieces when what I really want, what I need, is to be taken out of myself, to lose myself in the creative act. It's akin to what you've been writing about in your recent post.
Absolutely. It's important not to let go of those bits and pieces though. They keep the space open.
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