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Defying The Will Of ME/CFS

I won a photography award in the European Photography Contest 2022 for a series about my life with severe ME/CFS.

You can see my series of images here:

https://europeanphotoawards.com/winner-info.php?id=763

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 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 travelled 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 everyday 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.

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.

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 everyday. 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.

Hang in there everyone.

love,
Whitney

Here are the winning images, all taken post 2020. The project is called "The Living Death", from which these are but a few photographs.

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Donate to ME/CFS research at the Open Medicine Foundation to help stop the suffering of millions and end ME/CFS.








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