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By Penny Clare
I was mostly confined to bed in a dark room - for years, and years, and years.
At some point, in this isolated sea, I started taking photos. From my bed, in the dark. And my relationship to my illness and circumstances took on a different meaning and found creative expression. It was my way of creating movement.
The vast majority of my photos were shot with no artificial or natural daylight, though daylight was occasionally gleaned from a small opening or crack in the curtains or door.
What had been an atrocious impediment, severe light sensitivity, actually became a wonderful asset as I started to perceive different nuances and subtleties of light, depending on the time of day, season or level of my light sensitivity in any given moment. I began to explore hidden possibilities behind the mundane (awful) reality of my day-to-day existence.
In my exhaustion I made no attempt whatsoever to move objects or to compose pictures or prettify myself for the camera. The snapshots capture fleeting chinks of light and mysterious beauty that remained unseen by anything or anyone other than the camera. The highly energised and dynamic images appear as if they've come from another world. They turned the facts of my illness inside out and upside down. They express what ought to be clear to everyone but rarely is acknowledged in our culture, that the essence of a human being experiencing profound illness and disability is untouched and unconquerable. They make their statements silently, without words of frustration or protest, which by any account I was too ill to make.
I had spent what seemed interminable years in a state where living and dying had become so merged that I could not actually fulfil either condition. Creating photographic images with just a couple of seconds worth of 'energy' helped me to feel more alive, it tipped the balance giving me sensations of movement and expansion when I viewed them. There is an ancient Mayan saying "out of darkness comes light". I think of my photos and smile.
None of these photos were engineered using photoshop techniques, though 'light fill' was used to reveal what lay hidden in the shade of the room.
Crown of pillows
The bed deconstructing into its elements
A fingernail celebrates New Year
Journey to the centre of the futon I
Journey to the centre of the futon II
Sunrise over planet duvet
White flag above my bed (apologies to Dido)
Sense of self goes up in flames
Light's umbilical
Three wishes
The river runs through me
'The river runs through me' is a self-portrait: Penny's eye is in the top left corner. She said "This is the first image I took. I felt so ill it was as if I was dying and no one in the outside world could see me and I wanted a way to document the depths of suffering people can go through."
Phoenix Rising is a registered 501 (c)(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.
There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we'd love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.
And don't forget: you can always support our efforts at no cost to yourself as you shop online through the Phoenix Rising Store! To find out about more ways you can support Phoenix Rising, please visit our Donate page by clicking the button below.
View the Post on the Blog
By Penny Clare
"I stayed alone in the darkness and the impossible became possible" - anon
I was mostly confined to bed in a dark room - for years, and years, and years.
At some point, in this isolated sea, I started taking photos. From my bed, in the dark. And my relationship to my illness and circumstances took on a different meaning and found creative expression. It was my way of creating movement.
The vast majority of my photos were shot with no artificial or natural daylight, though daylight was occasionally gleaned from a small opening or crack in the curtains or door.
What had been an atrocious impediment, severe light sensitivity, actually became a wonderful asset as I started to perceive different nuances and subtleties of light, depending on the time of day, season or level of my light sensitivity in any given moment. I began to explore hidden possibilities behind the mundane (awful) reality of my day-to-day existence.
In my exhaustion I made no attempt whatsoever to move objects or to compose pictures or prettify myself for the camera. The snapshots capture fleeting chinks of light and mysterious beauty that remained unseen by anything or anyone other than the camera. The highly energised and dynamic images appear as if they've come from another world. They turned the facts of my illness inside out and upside down. They express what ought to be clear to everyone but rarely is acknowledged in our culture, that the essence of a human being experiencing profound illness and disability is untouched and unconquerable. They make their statements silently, without words of frustration or protest, which by any account I was too ill to make.
I had spent what seemed interminable years in a state where living and dying had become so merged that I could not actually fulfil either condition. Creating photographic images with just a couple of seconds worth of 'energy' helped me to feel more alive, it tipped the balance giving me sensations of movement and expansion when I viewed them. There is an ancient Mayan saying "out of darkness comes light". I think of my photos and smile.
None of these photos were engineered using photoshop techniques, though 'light fill' was used to reveal what lay hidden in the shade of the room.
Crown of pillows
The bed deconstructing into its elements
A fingernail celebrates New Year
Journey to the centre of the futon I
Journey to the centre of the futon II
Sunrise over planet duvet
White flag above my bed (apologies to Dido)
Sense of self goes up in flames
Light's umbilical
Three wishes
The river runs through me
Tweets and Facebook shares of the blog are welcome
© Copyright Penny Clare. Please do not reproduce any images without permissionPenny really wants to share this photo blog so people can get a window into the world of severe ME. So please do feel free to post an individual photo on facebook and twitter with a link back to this blog and mention Penny as the artist, (the link will be enough on twitter, given the limitations). Thanks
The blog link is http://phoenixrising.me/archives/21305
Penny no longer uses computers, but this email address wil be monitored on her behalf and messages will be passed on to her.
Phoenix Rising is a registered 501 (c)(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.
There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we'd love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.
And don't forget: you can always support our efforts at no cost to yourself as you shop online through the Phoenix Rising Store! To find out about more ways you can support Phoenix Rising, please visit our Donate page by clicking the button below.
View the Post on the Blog
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