The Living Death

I have been working on this project for 12 years, since 2010. It started when I became housebound with a chronic illness called Chronic Fatigue Syndrome or Myalgic Encephalomyelitis (ME/CFS). I’ve had ME/CFS for 17 years, or since I was 21. But it has gradually become more and more severe and in 2010 I became housebound.



I could no longer go out walking, so I couldn’t make the kinds of photographs I was inspired to make. Photography has been my main creative outlet since high school and without it I felt lost.



But in 2010 after my frustration reached a boiling point, I had a kind of breakthrough. I realized that my story of living with such a severe chronic illness for which there was no cure was the exact kind of story I would love to photograph if I was healthy, and that I could photograph myself. So I started making images of myself doing things I did everyday.



It was revelatory because not only was I able to make portraits again, but since I was the subject, I was able to decide to let the camera into my life completely without question, which is any photographer’s dream. But I never thought of these images as self portraits. I started making them as a photographer who finally gained access to a great subject. So I kind of split my mind into photographer and subject and thought about both separately. I liked to call them "documentary photographs of myself".



This work represents this latest part of this project, which I see as eventually having 4 parts. 1. Housebound in my apartment 2. Housebound in a room in my parent’s house 3. bedridden 4. (when/if there is a cure) recovering and then re-joining the world again. So this series is a glimpse of what I have made so far of part 3.



In making these photographs, I hope to not only make interesting, provocative works of art that speak to people without any backstory, but also spread awareness about the ME/CFS.