1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Science to Patients: Talking ME, Exercise and the Mitochondria - with Dr Charles Shepherd
The latest video release from the Dutch group ME/cvs Vereniging, with Dr Charles Shepherd from the UK ME Association, and announcing a live chat session to be held Thursday, April 10, 2014...
Discuss the article on the Forums.

Out of Darkness Comes Light - mysteriously beautiful photographs from a bedbound sufferer

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 23, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    649
    Likes:
    993
    View the Post on the Blog

    By Penny Clare

    [​IMG]


    "I stayed alone in the darkness and the impossible became possible" - anon

    [​IMG]
    The bedsheets take flight I

    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.

    [​IMG]
    The bedsheets take flight II
    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.




    [​IMG]
    Crown of pillows





    [​IMG]
    The bed deconstructing into its elements





    [​IMG]
    A fingernail celebrates New Year





    [​IMG]
    Journey to the centre of the futon I





    [​IMG]
    Journey to the centre of the futon II





    [​IMG]
    Sunrise over planet duvet





    [​IMG]
    White flag above my bed (apologies to Dido)





    [​IMG]
    Sense of self goes up in flames





    [​IMG]
    Light's umbilical





    [​IMG]
    Three wishes





    [​IMG]
    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."



    Tweets and Facebook shares of the blog are welcome :)
    © Copyright Penny Clare. Please do not reproduce any images without permission


    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.

    [​IMG]

    View the Post on the Blog
    Last edited by a moderator: Dec 25, 2013
    ibenagnes, Ren, ahimsa and 9 others like this.
  2. Nielk

    Nielk

    Messages:
    5,052
    Likes:
    4,507
    Queens, NY
    How beautiful and amazing. This is such a breath of fresh air. Having had to deal with so much in the past few months, it is so magical to see this work of light and art from a dark room. I can't explain the feelin except to say that it is very uplifting. Thank you Penny for sharing this.
  3. Chris

    Chris Senior Member

    Messages:
    578
    Likes:
    174
    Victoria, BC
    I too am awestruck at this coming, as it does, from a world I can barely imagine, let alone comprehend. Thank you Penny.
    Simon likes this.
  4. S.A.

    S.A.

    Messages:
    37
    Likes:
    44
    Missouri
    Beautiful and essential.
    Simon and beaker like this.
  5. Lynne B

    Lynne B Senior Member

    Messages:
    103
    Likes:
    95
    sydney, australia
    Penny,
    it's inspirational that you could make these radiantly lovely and ethereal images with such minimal means. They are worthy of comparison with the work of any other artist. I hope you gained emotional nourishment and a feeling of self fulfilment in making them.
    Best wishes for your health,
    Lynne.
    Simon, beaker and taniaaust1 like this.
  6. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,776
    Thank you! I find these photos to be even more exquisite against a dark background. (Try clicking on them to enjoy that effect.)
    Simon and beaker like this.
  7. beaker

    beaker CFS/ME 1986

    Messages:
    382
    Likes:
    552
    USA
    Thank you for sharing your artistry. It's stunning and deeply felt.

    Merry Christmas,


    Simon likes this.
  8. beaker

    beaker CFS/ME 1986

    Messages:
    382
    Likes:
    552
    USA
    I don't get a dark background when I do that. Do I need to do something special ? Or is it maybe the difference in computers ? Thanks
  9. Kati

    Kati Patient in training

    Messages:
    1,808
    Likes:
    839
    Well done, Penny. These images touched me. I will be sharing on Twitter and Facebook with your name with it. I believe it can do some awareness, keeping your copyright in mind. Best wishes.
    beaker and Simon like this.
  10. AndyPandy

    AndyPandy Making the most of it

    Messages:
    96
    Likes:
    214
    Australia
    So beautiful and uplifting. Thank you.
    beaker and Simon like this.
  11. Simon

    Simon

    Messages:
    1,191
    Likes:
    3,533
    Monmouth, UK
    I really do think these photos are amazing, so full of life and light despite the desperate conditons in which they were made.

    Phoenix Rising doesn't get a huge amount of traffic at this time of year so if you like these photos, and this blog, please do share them.

    Sharing on Phoenix Rising for the uninitated (me, until a few months ago)
    blindingly obvious for the rest

    You can only share from the blog itself, not from the Article thread page.

    1. Click on the "Share" tab that floats down the left hand side
    2. Click again to share on facebook, twitter etc
    share.gif
    Thank you!

    If you want to send a picture tweet, you could just retweet mine.

    Disclosure: as well as being a fan of these pics, I'm a friend of Penny's and first saw these pictures year ago. I'm so pleased they are finally reaching a wider audience.

    Happy Christmas all.
    Svenja, S.A., beaker and 1 other person like this.
  12. Firestormm

    Firestormm Senior Member

    Messages:
    5,753
    Likes:
    5,783
    Cornwall England
    Just click on a picture and it will open on a separate page with a black background :)
  13. Bob

    Bob

    Messages:
    7,359
    Likes:
    8,405
    England, UK
    Penny, these photos are both attractive and intriguing.
    And it's a thought provoking project that you've carried out.

    It's a great collection of photos, and I have two individual favourites:

    Sunrise over planet duvet
    Journey to the centre of the futon II

    I'd be happy to have these framed and hung on my walls.
    (Apart from being great photos they'd also provoke interesting discussions.)

    I'd love to see these photos gain a wide audience.
    Last edited: Dec 24, 2013
    beaker, Valentijn and Simon like this.
  14. Simon

    Simon

    Messages:
    1,191
    Likes:
    3,533
    Monmouth, UK
    From Penny
    Ren, brenda, S.A. and 6 others like this.
  15. beaker

    beaker CFS/ME 1986

    Messages:
    382
    Likes:
    552
    USA
    mine opens in another window and is white background and the photo is up on the upper left of the page.
    Maybe it's a mac thing ?
    Thanks anyways.
    I enjoy them very nicely here : )
    Bob likes this.
  16. Bob

    Bob

    Messages:
    7,359
    Likes:
    8,405
    England, UK
    I think it might be a browser thing.
    Firefox shows the images in the centre of the screen on a dark background.
    All the other browsers seem to show them in the top-left hand corner using a white background.
    But still enjoyably, however they're viewed.
    beaker likes this.
  17. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,912
    Likes:
    2,949
    N. California
    The photos are amazing and inspiring. Creativity can do wonders for the soul. And this statement says it all:

    Yes!
    rosie26, Nielk, Simon and 1 other person like this.
  18. Simon

    Simon

    Messages:
    1,191
    Likes:
    3,533
    Monmouth, UK
    Penny said
    Dreambirdie likes this.
  19. Hanna

    Hanna Senior Member

    Messages:
    296
    Likes:
    203
    Jerusalem, Israel
    Thank you Penny, those images are a true gift for us. I am touched by their beauty and elevation. Very spiritual.
    Simon and Nielk like this.
  20. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,912
    Likes:
    2,949
    N. California
    Definitely, they did.

    Remembering "my essence" has kept me afloat through some very turbulent waters, and expressing my inner process creatively has saved my life.
    rosie26, Simon and Nielk like this.

See more popular forum discussions.

Share This Page