[ [ w i t h i n f o u r w a l l s o f s e v e r e m . e ] ]
V s c r o l l d o w n t o v i e w e x h i b i t V
Myalgic Encephalomyelitis, also referred to as Chronic Fatigue Syndrome or ME/CFS, has been underexposed for decades, especially in its severe form.
Many doctors have no experience with treating severe ME, nor do they realise how devastating it can become. This is simply because they never see it. Patients are too unwell to leave their house and are rarely offered home visits. They’re largely bedridden, living in darkened rooms, unable to tolerate light, sound, movement or touch and cannot care for themselves. They slip away from life into the darkness and nobody knows they’re there.
This exhibit is dedicated to Whitney Dafoe, a young, adventurous, award winning photographer and film maker before developing an extremely severe form of ME/CFS. His health struggles began at age 21 and worsened after each quest to explore the world. Whitney’s health continued to deteriorate over the years before having to let go of his beloved photography career. Whitney became completely bedridden, attached to a feeding tube and an intravenous fluid line. He hasn’t spoken a word, eaten a crumb of food or sipped a drop of water in 8 years.
While trapped within a tortured body, hidden away in a darkened room, his life was stripped right down to a single purpose. To stay alive.
“Your body is so much stronger than you realize and much stronger than your mind. It will find a way to keep living. You don’t need to decide anything, you just need to let your body keep going.”
– Whitney Dafoe
Whitney’s purpose was a powerful one. By staying alive, he gave hope to millions of patients worldwide. Since Whitney’s diagnosis, his father, Ronald Davis, a professor of Biochemistry and Genetics and award winning researcher, has devoted his life to finding a cure for ME/CFS in a desperate bid to save his son and millions like him.
By staying alive, Whitney saved lives.
Paula Knight has been bedbound since 2018 as a result of Myalgic Encephalomyelitis (ME) (aka CFS), and Postural Tachycardia Syndrome (PoTS). Her photos start in 2017, and document how she sees the world - from wheelchair to 100% bedbound living a half-life in one room. They explore her exile from the outside and natural world, and her disability. Some are taken by John Austin under her direction. Some are taken remotely using a static camera-to-laptop interface. Paula now requires full-time care, and is unable to feed or wash herself, type or use a computer, and often has periods of being unable to speak due to the severity of her condition. Bedscape is an ongoing creative project.
View more of Paula's Bedscape series and her beautiful artworks and comics on her website.
Absence of Life
Energy is what gives humans and all animals life. You could define ME/CFS by calling it the absence of life. The more severe you have ME/CFS the less alive you are. Severe ME/CFS patients are literally on death’s door, clinging to a tiny corner of their body and mind that is still alive.
This needs to be understood by the public, doctors and scientists of the world. ME/CFS does not cause "tiredness". Having ME/CFS means literally being less alive but still completely conscious to experience the lack of life within you.
This is why ME/CFS causes so much profound suffering. Our lives are taken away from us physically. And yet we must bear witness to our limited state of existence. For years and decades. As the world keeps going on without us. And no one but fellow ME/CFS patients understand.
– Whitney Dafoe
Read more of Whitney’s stories on his blog.
I’ve been ill for 33 years, Severe ME, now living in a darkened 9m² room only leaving the bed to go to the toilet. I can, on good days look outside for a minute with sunglasses to get a glimpse of the world, but on most days I can’t. When it’s a dark night the curtains can be open.
– Ilse Sjouke
[ [ m i l l i o n s t r a p p e d w i t h i n f o u r w a l l s ] ]
[ [ n o t l i v i n g – o n l y e x i s t i n g ] ]
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Click on images above to view larger slide gallery | Photography by Taylor Ryan
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The great beyond
When I was severely ill I lost so much of myself. I was holding onto fragmented memories left imprinted in my mind of who I was but that person in reality didn’t exist anymore. The thought patterns and emotions and world views that created the person I was no longer existed. Yet I was still technically alive just enough to be conscious and bear witness to this state of non existence.
The suffering this causes is so profound. I can only liken it to one of the hell realms described in Tibetan Buddhism. A world full of nothing but pain, loss, agony and constant never ending challenges to holding onto what little I had left. Every mistake took me deeper into the void of nothingness.
I have recently gained back some of my mind and body. It feels like coming back from the dead. I’m in a strange state now where bits and pieces of Whitney have come back to life but most of me has not. I’m not able to get out of bed, eat or drink water or go out and feel the world again - feel that feeling that is being alive.
The experience of being on death’s door for never ending years has changed me permanently. And yet I’m still not well enough to come anywhere close to fully inhabiting my own mind and body again. So I don’t really know who I am. I’m in a sort of limbo right now. Stripped of the person I once was and would have become but not able to take the experiences I’ve had and create a new person out of them. I’m still a ghost, suddenly no longer fully transparent yet at the same time unable to actually exist in physical form.
I don’t know who I am going to become. But one thing I do know is how much the experience of losing everything has taught me. I think ME/CFS is the greatest teacher I’ve ever had. So I have hope that when better treatments and then a cure is found I will be a much more conscious, wiser, more resized being. Whoever that person is that is waiting to be reborn is an incredible person and I can’t wait to see that person and be that person and contribute to the world with my whole being.
I think this is one of the most tragic things about the high rate of suicide among ME/CFS patients. These are people who have been through something completely unique to the rest of society and have a truly unique and profound perspective to offer the human race. When an ME/CFS patient ends their life so much is lost from the world.
We have seen the other side. And we need to stay alive so that we can join the world again and share with the rest of humanity what is really out there in the great beyond. We have an incredible understanding of what life is. How precious and fleeting it is. How little time we have. And more. These are lessons that most people never learn and we need to teach the rest of humanity how sacred the life they have truly is.
– Whitney Dafoe
[ [ s o l i t a r y c o n f i n e m e n t ] ]
I always was an open minded person. Curious. I travelled a lot and loved my work, was happy meeting people. Never thought I could drown in such a painful and agonizing solitary confinement. In the middle of my life. In the middle of an ignorant society and cruel medical system. Why isn’t the media reporting about one of the biggest medical scandals of the 21st century? We need urgently specialists and researchers who get funding for ME/CFS. We need support and awareness from everywhere. And we do need people who are involved to research the whole picture of this devastating illness which is so unbelievable complex. For me its hell on earth. And you can’t escape. Not even for a second. Never.
– Sibylle Dahrendorf, July 2021
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[ [ s e a r c h i n g f o r l i g h t a n d h o p e ] ]
A reporter recently asked me, "What gives you hope?" in an interview for an article about the book The Puzzle Solver A Scientist's Desperate Quest to Cure the Illness That Stole His Son.
Hope is not something that needs to be given. You do not need permission to have hope. Hope is something that comes from within and no one and nothing can take it away. Hope comes from understanding your fundamental self and the universe. There is so much more than this life in this moment of pain. The universe is vast and full of both suffering and incredible beauty. I have hope because I see the beauty as well as the suffering. And I have hope simply because I have hope. This is a choice all of you can make.
See the beauty. Dare to hope.
– Whitney Dafoe
From Whitney’s blog.
Below is what it looks like to live with severe ME/CFS. Every image is an honest depiction of real moments and experiences.
– Whitney Dafoe
Roll over or click on images to view captions
Open Medicine Foundation supports collaborative medical research to find effective treatments and diagnostic markers, as well as supporting health care education for the highly debilitating, multi-system disease, Myalgic Encephalomyelitis, also referred to as, Chronic Fatigue Syndrome, or the acronym ME/CFS.
If you're unable to donate at this time, please share this exhibition widely to help raise funding and awareness for ME/CFS, which is in desperate need of biomedical research and support.