The Living Death

I have been photographing myself living with a chronic illness for which there is no cure for the last 13 years, following the progression of my illness from being housebound to having to leave my apartment and move in with my parents in order to receive assistance with daily living, and then continuing to get worse and becoming completely bedridden in that house, unable to speak at all and needing a feeding tube and PICC line installed in my body because my stomach became paralyzed.



This project started in 2010 when I became housebound with a chronic illness called Chronic Fatigue Syndrome or Myalgic Encephalomyelitis (ME/CFS). I’ve had ME/CFS for 18 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 walking outside, so I could no longer make the kinds of photographs I was inspired to make.



But in 2010 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 be inspired to photograph if I was healthy, and that I could photograph myself.



It was revelatory for me because 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.



I never thought of these images as self portraits. I started making them as a photographer who finally gained access to a great subject. I 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 in that same room in my parent's house

4. When there is a cure, recovering and finding my humanity and place in the world again.



So this series is a glimpse of what I have made so far of part 3.