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.'
Monday, April 30, 2007
Friday, April 27, 2007
St Theresa's Prayer
I was recently sent a Round Robin email which contained St Theresa's prayer with a list of instructions about how to send it on and good things will befall me. You know the usual stuff.
It was curious because in this house, through the trials and tribulations of births, illnesses and deaths old Theresa has made herself quite felt as a presence. I've no idea how it started. I did go through a phase of buying religious statuary just because I love the imagery and because there was a funny shop that imported stuff from French and Belgian flea markets and somehow, in the darkest days, these things spoke to me. One I bought was, I thought, of Our Lady and it was only when I got home I realised that the bottom of the statue/buts was covered in roses. It was a bust of St Theresa of the Roses from France. She lived at the end of the 19th century and was quite a tough cookie in her way.
I cannot stand organised religion but I am quietly spiritual and whatever the beliefs I find a certain stillness and something to admire in this woman.
I sent off the email to 6 people as instructed. Not one has responded. Either they don't care, they don't like anything religious or the Subject line 'St Theresa's Prayer' has sent the message straight into the spam tray.
For myself I am pleased that my friend sent me the message and I have been reminded of the prayer.
It was curious because in this house, through the trials and tribulations of births, illnesses and deaths old Theresa has made herself quite felt as a presence. I've no idea how it started. I did go through a phase of buying religious statuary just because I love the imagery and because there was a funny shop that imported stuff from French and Belgian flea markets and somehow, in the darkest days, these things spoke to me. One I bought was, I thought, of Our Lady and it was only when I got home I realised that the bottom of the statue/buts was covered in roses. It was a bust of St Theresa of the Roses from France. She lived at the end of the 19th century and was quite a tough cookie in her way.
I cannot stand organised religion but I am quietly spiritual and whatever the beliefs I find a certain stillness and something to admire in this woman.
I sent off the email to 6 people as instructed. Not one has responded. Either they don't care, they don't like anything religious or the Subject line 'St Theresa's Prayer' has sent the message straight into the spam tray.
For myself I am pleased that my friend sent me the message and I have been reminded of the prayer.
St. Theresa's Prayer
May today there be peace within.
May you trust that you are exactly where you are meant to be.
May you not forget the infinite possibilities that are born of faith.
May you use those gifts that you have received, and pass on the love that has been given to you.
May you be content.
Let this presence settle into your bones,
and allow your soul the freedom to sing, dance, praise and love.
It is there for each and every one of you.
Tuesday, April 24, 2007
Pretty pictures from Suffolk
I often take the camera when I walk Tiffin.
He's slow.
I'm slow.
We fit like hand in glove.
Saturday, April 21, 2007
Missing you already
Partner and children have gone to big annual arts day. It's for all ages and all abilities. Involves about 500 people and lasts all day -- 10a.m. til 10p.m. This feels strange because I used to organise it ....before I was ill. I cannot fathom how I did it now, in terms of energy: the whole long run up from 10 months before, the organisation, publicity, catering, entertainment, the contracts, budgets, fundraising, volunteer drive. Then on the day I'd be there from 8a.m.to organise, rally the troops, meet and greet, jolly along etc.
One of our friends who has also gone with her child, asked if I would be going today. No. For one I couldn't possibly last more than half the morning and then wouldn't have the energy to drive back. Usually my partner would drive us there and back so I could be with the kids for at least the morning. Apart from that it's still too raw to be faced so directly with what I cannot do anymore. I know if I went I'd meet lots of people I haven't seen for, maybe, 6 or 7 years. They've moved on and so have I but in completely different spheres.
Most of the time I can block it all out. I can listen to my own and others' good advice about moving forward and not looking back. Sometimes the past catches up and I can't help but feel sad and miss the energetic person who was full of ideas and, yes, quite dynamic in my own small way.
I have learnt to appreciate the small things; learnt to love the same small patch of land I pace with the dog because I can't drive to the sea anymore; learnt to 'smell the roses'; learnt to appreciate the extra time my illness gives me with the children ('I bet they love having you at home so much') but sometimes, just sometimes, I yearn to be a grown up participating out in the world. It's all part of the shifting bereavement of acquired disability
One of our friends who has also gone with her child, asked if I would be going today. No. For one I couldn't possibly last more than half the morning and then wouldn't have the energy to drive back. Usually my partner would drive us there and back so I could be with the kids for at least the morning. Apart from that it's still too raw to be faced so directly with what I cannot do anymore. I know if I went I'd meet lots of people I haven't seen for, maybe, 6 or 7 years. They've moved on and so have I but in completely different spheres.
Most of the time I can block it all out. I can listen to my own and others' good advice about moving forward and not looking back. Sometimes the past catches up and I can't help but feel sad and miss the energetic person who was full of ideas and, yes, quite dynamic in my own small way.
I have learnt to appreciate the small things; learnt to love the same small patch of land I pace with the dog because I can't drive to the sea anymore; learnt to 'smell the roses'; learnt to appreciate the extra time my illness gives me with the children ('I bet they love having you at home so much') but sometimes, just sometimes, I yearn to be a grown up participating out in the world. It's all part of the shifting bereavement of acquired disability
Friday, April 20, 2007
Fashionable names, fashionable attitudes and the reality behind them
Reading some more of the Griff R-J book and struck by the ordinariness of all the boys names. When did things change ?
Back in my days of school we all had solid traditional names: Janet, John, Michael, Brian, Melanie, Guy, Linda. Julie, Sarah. Now at my childrens' school there's hardly a name we would have recognised in 1964. Who had ever heard of a child called India, Tiffany, Saffron, Harmony, Darla or Sabian. Who would have given their child such an old fashioned name as Edward, Harry, Cecily, as Henry in 1964. It would have seemed absurd and pompous.
What was it like in the 60s to have an unusual name or a 'foreign' name ? I remember one girl called Mignon (great name, I think) who was teased relentlessly. So was one of my friends who had a Finnish Mum and ate 'strange' soup and rye bread at home. Personally I loved it. I loved going to his house and speaking to his Mum and I loved the glamorous Italian woman who lived 3 doors up and whose house had shiny marble or wood floors instead of carpet. Her kitchen always had different smells to ours and her daughters were dressed immaculately.
Now everyone seems to be more tolerant and ready to experiment with different names, cuisine etc. but I wonder if underneath, that much has changed. I talk to our Polish window cleaner and hear how his grandchildren (who go to my daughter's school) are apparently accepted and yet he himself is exploited and ripped off by his employer. I think of the Portugese people who were attacked in Thetford last year (not a million miles from here). I think of walking down Woodbridge Thoroughfare a few years back. We were with my brother-in-law's then-girlfriend and her two little boys. All three are black -- not pale 'acceptable' honey colour, but black black. She was very fashionable, very elegant and very beautiful with a serene way about her. Her boys were well behaved handsome chaps. I asked my partner who is born and bred Woodbridge if people were looking at us. I had this uncanny feeling we were being gawped at. Was I paranoid or was it real ? 'They're looking at her and the boys' said my partner. We were a spectacle in that sleepy Suffolk market town --- even though for years there had been a US base not 5 miles away with GIs of every hue. We went to a little pub and ate lunch and still the stares remained. It was that day that I got an tiny inkling of how it must be to be apparently different.
Why is it that people can't just see people as people, good bad and in between, regardless of colour or race or religion. I just don't get it and never have.
Back in my days of school we all had solid traditional names: Janet, John, Michael, Brian, Melanie, Guy, Linda. Julie, Sarah. Now at my childrens' school there's hardly a name we would have recognised in 1964. Who had ever heard of a child called India, Tiffany, Saffron, Harmony, Darla or Sabian. Who would have given their child such an old fashioned name as Edward, Harry, Cecily, as Henry in 1964. It would have seemed absurd and pompous.
What was it like in the 60s to have an unusual name or a 'foreign' name ? I remember one girl called Mignon (great name, I think) who was teased relentlessly. So was one of my friends who had a Finnish Mum and ate 'strange' soup and rye bread at home. Personally I loved it. I loved going to his house and speaking to his Mum and I loved the glamorous Italian woman who lived 3 doors up and whose house had shiny marble or wood floors instead of carpet. Her kitchen always had different smells to ours and her daughters were dressed immaculately.
Now everyone seems to be more tolerant and ready to experiment with different names, cuisine etc. but I wonder if underneath, that much has changed. I talk to our Polish window cleaner and hear how his grandchildren (who go to my daughter's school) are apparently accepted and yet he himself is exploited and ripped off by his employer. I think of the Portugese people who were attacked in Thetford last year (not a million miles from here). I think of walking down Woodbridge Thoroughfare a few years back. We were with my brother-in-law's then-girlfriend and her two little boys. All three are black -- not pale 'acceptable' honey colour, but black black. She was very fashionable, very elegant and very beautiful with a serene way about her. Her boys were well behaved handsome chaps. I asked my partner who is born and bred Woodbridge if people were looking at us. I had this uncanny feeling we were being gawped at. Was I paranoid or was it real ? 'They're looking at her and the boys' said my partner. We were a spectacle in that sleepy Suffolk market town --- even though for years there had been a US base not 5 miles away with GIs of every hue. We went to a little pub and ate lunch and still the stares remained. It was that day that I got an tiny inkling of how it must be to be apparently different.
Why is it that people can't just see people as people, good bad and in between, regardless of colour or race or religion. I just don't get it and never have.
Thursday, April 19, 2007
Surburban heritage
When I was at Art School I did a whole tranche of work about growing up in suburbia. I didn't get to Art School until I was nearly 30 and in my younger days there was a kind of shame or embarassment about growing up in such bland surroundings. I felt I should either come from a more sophisticated background or something more feral and grungy. In other words I should have the cache of being posh or the cache of being working class and down with the kids. I wanted to be cool and where I came from wasn't cool. I grew up in quite a nice semi and was brought up with the same nice middle class aspirations as many of my neighbours and friends but that didn't cut the mustard when I was 17. My heroes were David Bowie and Warhol and the Velvet Underground, Alice Cooper, Nico. Surley they hadn't come from 'nice' houses and held their knife and fork properly, said please and thank you and watched variety shows on TV with their Mum and Dad on a Saturday night. Surely their parents hadn't had a slight distain for programmes on the 'commercial channel' ----there was only one then !
At Art School I began to reassess. Then I realised that many of the people I revered came from similar backgrounds to myself and the idea of coming from such an ordinary place seemed OK.
At the moment I am really enjoying reading Griff Rhys Jones biography 'Semi-Deatched'. With a surname like his I had assumed that he was from Wales and, indeed, he is of Welsh stock, but it turns out he actually came not a million miles from where I lived. He is three years older than me but many of his memories are mine: places, people, music, parties and he has a wonderful way of providig a space in your head where you could almost be really sitting enjoying a strawberry Mivvi whilst you read. Even his father reminds me of my father. His was a doctor. Mine was a Headmaster: the same clubbability of the professions; the same formal attire for small children of the 50s and 60s; the same lessons in how to attend grown ups' parties and hold a sensible conversation with an adult when you were 8 years old whilst trying hard not to drop the sausgae roll and vol au vent off your plate.
The best bit was always later when you had shown you were there, spoken politely to the grown ups and then they'd lost interest in you and were swapping stories and gossip with each other. One of my fondest memories is of sitting under the grand piano at my parents' posh friend's house, with a plate of nibbles and all the other kids: little girls in sticky out party frocks with bunny wool boleros and little boys in tailored short trousers and collar and ties with tartan patterns or cowboys.
At Art School I began to reassess. Then I realised that many of the people I revered came from similar backgrounds to myself and the idea of coming from such an ordinary place seemed OK.
At the moment I am really enjoying reading Griff Rhys Jones biography 'Semi-Deatched'. With a surname like his I had assumed that he was from Wales and, indeed, he is of Welsh stock, but it turns out he actually came not a million miles from where I lived. He is three years older than me but many of his memories are mine: places, people, music, parties and he has a wonderful way of providig a space in your head where you could almost be really sitting enjoying a strawberry Mivvi whilst you read. Even his father reminds me of my father. His was a doctor. Mine was a Headmaster: the same clubbability of the professions; the same formal attire for small children of the 50s and 60s; the same lessons in how to attend grown ups' parties and hold a sensible conversation with an adult when you were 8 years old whilst trying hard not to drop the sausgae roll and vol au vent off your plate.
The best bit was always later when you had shown you were there, spoken politely to the grown ups and then they'd lost interest in you and were swapping stories and gossip with each other. One of my fondest memories is of sitting under the grand piano at my parents' posh friend's house, with a plate of nibbles and all the other kids: little girls in sticky out party frocks with bunny wool boleros and little boys in tailored short trousers and collar and ties with tartan patterns or cowboys.
Wednesday, April 18, 2007
Time to try again
I've been following four blogs ( readingthesigns/and velo-gubbed-legs and confessionsofapsychotherapistand michaelnobbs ) for the past six months and decided it's time to try and go back to blogging for myself again.
I feel frustrated and sad that I didn't manage to maintain it before. This was meant to be a space for me to be me without all the baggage of my condition (M.E.) but, inevitably, the illness got in the way and life became hectic and I just couldn't keep it up. I realise now (in part thanks to reading those blogs) that it's OK to be someone with M.E. and still write about other stuff: that one doesn't necessarily exclude the other. I can't escape the illness, even in a virtual world, so I may as well get on with it and be more honest with myself and about myself. All sorts of stuff has happened with regard to a diagnosis and many of my fears and intuitions have been confirmed in the last two years. This initially led me to a place of graet anger and frustration but I'm gradually coming to terms with things again.
Recently 'Reading the Signs' has been trying to find a way to express in words, through a poem, how it is to have M.E. Her recent comments inspired me ---- well they didn't actively inspire, they kind of seeped into my unconscious so that I woke this morning with this verse in my head.
I'm not usually taken to words like this - my head works more visually, but I know how I feel about the illness. Many people, paricularly women, seem to envisage the illness as some kind of seedy man who preys and stalks. I've been stalked in real life and it isn't that feeling for me. It's much more parasitical....................
Blessed curse,
No dripping blood for me.
Insidious lover
Attendant on my misery.
Hands that grab and prey and pull me down,
thrusting, clawing, pawing.
Drown.
I feel frustrated and sad that I didn't manage to maintain it before. This was meant to be a space for me to be me without all the baggage of my condition (M.E.) but, inevitably, the illness got in the way and life became hectic and I just couldn't keep it up. I realise now (in part thanks to reading those blogs) that it's OK to be someone with M.E. and still write about other stuff: that one doesn't necessarily exclude the other. I can't escape the illness, even in a virtual world, so I may as well get on with it and be more honest with myself and about myself. All sorts of stuff has happened with regard to a diagnosis and many of my fears and intuitions have been confirmed in the last two years. This initially led me to a place of graet anger and frustration but I'm gradually coming to terms with things again.
Recently 'Reading the Signs' has been trying to find a way to express in words, through a poem, how it is to have M.E. Her recent comments inspired me ---- well they didn't actively inspire, they kind of seeped into my unconscious so that I woke this morning with this verse in my head.
I'm not usually taken to words like this - my head works more visually, but I know how I feel about the illness. Many people, paricularly women, seem to envisage the illness as some kind of seedy man who preys and stalks. I've been stalked in real life and it isn't that feeling for me. It's much more parasitical....................
Blessed curse,
No dripping blood for me.
Insidious lover
Attendant on my misery.
Hands that grab and prey and pull me down,
thrusting, clawing, pawing.
Drown.
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