Whitney Dafoe

Whitney Dafoe – “Defying the Will of ME/CFS”

Whitney Dafoe won the award for documentary photography in the European Photography Contest 2022 for a series called “The Living Death” about his life with severe ME/CFS. Check out the series of images here or on his website. It’s amazing to see Whitney – so disabled – able to contribute on this level. His photographic eye clearly intact, he was able to win the award using the camera on his cell phone. He wrote:

On Winning the European Photography Contest

“There were quite a few winners in this contest so it’s not a huge deal, but thousands of people submitted work from all over the world and I am a Gold Award Winner and it is for images I took with my cell phone from bed, honestly depicting life with severe ME/CFS. I am proud of that.”

“Because it is an acknowledgment that I am doing something significant and meaningful with photography. Something significant and meaningful with my life.”

“Before ME/CFS became severe I wanted to be a documentary photographer. I saw a famous war photographer give a talk about his life and work at my school and instantly knew that was what I wanted to do with my life and furthermore felt strongly that it was what I was put on this earth to do.”

“But I simultaneously knew it was something I could not do because of ME/CFS. Because every time I traveled my health plummeted and because I didn’t have the energy or stamina that was necessary for that kind of job. But I remember him listing off all these sacrifices he had to make to live the life he lived – sacrifices that most people would not make, like family, comfort, home, security, children, etc – and I remember feeling like if I could sign up right then I would. I was ready. But my body was not.”

“When I became housebound with ME/CFS in an apartment in Berkeley, CA, I could no longer go out photographing and it broke my heart. I got so desperate to make photographs it was truly painful and a huge weight on my heart. I eventually had a breakthrough when I realized that my story was one that I would like to photograph if I was healthy and that I could photograph myself. So I started making images of things I did and experienced every day stuck at home. I made thousands of images of myself housebound in that apartment and continued the project as I had to move into my parent’s house and continued to get worse.”

Whitney Dafoe

From “Severe ME/CFS Awareness Day”.

“Now here I am bedridden. In 2013 I had to stop the project because I could no longer photograph. For 7 long years, i was too sick to even use a phone or computer let alone a camera of any kind. To sick to communicate in any way even in the way that was instilled so deeply in me. Photographs. But I got a bit better in 2020 and was able to use a phone and I immediately resumed photographing my life, making documentary photographs of my life with ME/CFS as best I could with a phone and limited mobility – limited ability to get the angles and perspectives and light that I really wanted and envisioned to truly capture what my life was like. But I worked on it anyways and made the best images I could.”

“And here they are winning an award. It means a lot to me because it feels like I am defying the will of ME/CFS. It has taken everything it can take from me and yet I am still living my dream of being a documentary photographer.

No, I’m not dodging bullets in Ukraine with nothing but a few changes of clothes and my camera on my back. I would rather be there doing that. I still feel like that’s what I’m supposed to be doing. But I’m here in bed and instead of bullets I’m dodging the minefield of ME/CFS and living a severely limited life. And that’s what I’m documenting.”

“It’s a universal story of suffering and chronic illness, but it’s also specifically about ME/CFS.”

I hope to use the images not only as works of art that stand on their own but to spread awareness of ME/CFS. Photography is a powerful form of visual art because we store memories as still images. So Photography is able to slip into our own consciousness almost as if it was something we lived or witnessed ourselves.”

Whitney Dafoe J-tube

One of Whitney’s award-winning images.

“The awards limited how much I could write for the project description and I, unfortunately, didn’t have space to write about what ME/CFS is or why it is important to learn about because I had to explain the project, which is very unique to the art world and needs an introduction.”

“Hopefully, I can continue to use photography to spread awareness about ME/CFS. I hope to get more publicity with this work so people see what it is like, see what we live every day. And I want to have a vast body of work ready for when the cure is found and ME/CFS is completely legitimized and made known to the public in hopes that this work will act as a visual record of what we have all been through for decades of neglect and repression by society.”

Living Life – Whatever it Brings

While the series was called “the Living Death”, perhaps in order to get across just how serious ME/CFS can be, Whitney is clearly committed to living life – even in a terribly debilitated body – to the fullest extent possible. A major goal of his has been to help others – particularly those with severe ME/CFS – to find a way to make it through.

In that way, Whitney reminds me of people like Stephen Hawkins or Christopher Reeves – who’ve endured great physical debilitation yet who’ve managed to find value and joy in life. Through his writings, Whitney has been a reminder that what happens matters, somewhere in the pain, the strangeness, the confusion, the fear that comes along with ME/CFS – that an unvarnished self still exists.

Whitney Dafoe - update on my health

From “Update on My Health”.

Of course, it’s not easy. A downturn in his health left Whitney wanting to scream at his new limitations:

“So my brain/mind is much, much worse than it was a year ago, and cannot sustain working on things or sometimes cannot at all. Which is devastating for me…. I feel frustrated most of the time these days, wanting so badly to be able to work on things even if I’m stuck here in bed. Sometimes I want to scream at the heavens: “is it not enough to keep me bedridden??!! Can I not find some kind of life here in bed??!!!”

In the end, though, he finds some kind of acceptance:

“It is ME.”

It will do what it does. Our challenge is to find a way to accept it – again and again, and again. A more recent blog post,  “Feelings are Vistors”, suggested he had found a way.

Whitney Dafoe Feelings

From Whitney’s “Feelings are Visitors” blog.

In it, Whitney asserted he is not his disappointments, his fears, his upsets. Toni Bernhardt, whose books, “How to Be Sick“, and “How to Live Well with Chronic Pain and Illness: A Mindful Guide”, approached having ME/CFS from a Buddhist perspective, could not have said it better. From Whitney:

“The way I feel does not define me. I am not my feelings. They are but visitors. They will come and go, and I will remain. This feeling too will leave and I will remain. My spirit and awareness is still here and will emerge again.”

“We are not ME/CFS, we have ME/CFS. We are not sick, we have sickness. We are not tired we have tiredness right now. We are not sad or lonely, or desperate, we have these things, and in the future we will give them away.”

“We are not our emotions, they are only visitors that come and go. Remember that they will go and take note of when they do.”

“Whatever you feel will pass in time as well. And something new will come along and visit you.”

A Message of Defiance – to Severe ME/CFS

Then, on Severe ME Day came what can only be described as a message of defiance to severe ME/CFS: “You can take just about everything but you can’t take me, my ability to love, my sense of self-worth, my creativity, my experience of beauty, my joy. You will never define me – I will find a way to rise above you.”

Whitney Dafoe - severe ME/CFS“Dear Severe ME/CFS,

You can’t have my life, and you can’t have me. I can withstand anything you have to give and more. I will always rise above you.

You can take my friends and relationships, but you can never take my love.

You can take my career, but you can never take my worth.

You can take my ability to make things, but you can never take creativity from me.

You can take food away from me, but you can never take self-nourishment.

You can keep me in bed, but you can never confine me.

You can disable me, but you can never define me.

You can take the functionality of my brain, but you can never take my mind.

You can take away my ability to move, but you can never stop me.

You can inflict immeasurable pain that never ends, but you can never take the peace I hold within.

You can instill fear in all of my senses that makes me cower from the world, but you can never take away the beauty of the world.

You can take all things meaningful to me, but you can never take my purpose.

You can make me suffer, but you can never stop the joy I hold in my heart.

You can make me wish, but you can never make me beg.

You can take everything but my life, but I will always endure.

Because I am better than you. You will linger for a time and you will try your best to stop me and end me, but I am boundless. I will rise while you fall to ashes and one day cease to exist. You think you’re a monster? I am the monster. I will conquer you and destroy you. I am master of all things. I am life. Endless life.

I am a Severe ME/CFS Patient and I have never been stronger than in this moment right now. I am an all-powerful, living, breathing, soul. You will never stomp me out.


Whitney Dafoe”

Congratulations to Whitney on his award, and thanks for the reminders.

Whitney’s website

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