The Living Death

Whitney Dafoe
2010-2024

I have been photographing myself living with a chronic illness for which there is no cure for the last 13 years, following my progression of 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 leave the house and walk, which is an integral part of my photographic process. So I went for a long time without being able to photograph at all, which was a dark time for me emotionally. Photography has been my main creative outlet since high school and without it I felt lost.

But in 2010, I had a 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 be inspired to photograph and show the world 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 for me 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 subject. I decided I would make a photograph of myself everyday, depicting everyday moments and experiences.

I did a lot of mental work to think of images that were true representations of real moments in my life, or honest depictions of things I was going through. It is difficult to have the perspective to do this with yourself, 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. I split my mind into photographer and subject and thought about both separately. I always called them "documentary photographs of myself".

This project continued in that apartment in Berkeley, California for 2 years, and followed my life as I got worse with ME/CFS, eventually having to move into a room in my parents house. I continued photographing my life housebound in my parent’s house for another year before I suddenly got much worse, becoming bedridden and unable to communicate in any way or use a camera, computer or phone at all. At this point I had to stop photographing again and the project was put on hold.

A dark period followed for about 7 years where I could not speak, or communicate in any way, I could not eat or drink a crumb of food or drop of water due to a paralyzed stomach (severe gastroparesis). All food was pumped into my stomach by a Jtube and I got all fluids from a PICC line (like a permanent IV) in my shoulder. For much of this time I could not even move, moving even a muscle made my symptoms worse. I had to lie completely still in bed and was left with nothing but my thoughts and memories which were very foggy due to cognitive issues commonly caused by ME/CFS. Much of the time I lived in a thoughtless, feeelingless void that is worse than anything I ever could have imagined. The illness is sometimes referred to by patients as "The Living Death" because you are stripped of everything that once defined being alive, but left alive to bear witness to this state.

Then in 2020 a miracle happened. I took an experimental drug that was helping some ME/CFS patients and I slowly started getting a little bit better. I was still bedridden, and could not speak, eat or drink anything, but I started being able to use my phone and computer again and move around in bed a little bit. I soon realized that I could resume the photography project that had been on hold for so many years with my cell phone and even though the image quality and photographic process would not be the same, it meant I could photograph again. I later bought a DSLR and continued photographing using both my phone and when I had the energy, my DSLR.

I see this project as eventually having 4 parts. (1) Housebound in my apartment in Berkeley, California (2) Housebound in my parent’s house in Palo Alto, California (3) Bedridden in a room in my parent’s house (4) [when/if there is a cure] recovering and then re-joining the world again. The images seen here are a glimpse of parts 1, 2 and 3. But the project is vast and covers many more aspects of my life than I am able to include in such a limited number of photographs. I hope to someday publish a book for each part of this project.

In making these images, I hope to not only make interesting, provocative works of art that speak to people about the nature of human suffering and chronic illness, and evoke emotion and inspiration in viewers without explanation, but also spread awareness about ME/CFS.

Introductory information about ME/CFS:

The Symptoms of ME/CFS vary from patient to patient. The most fundamental symptom is debilitating fatigue that worsens after physical or mental exertion. But fatigue is much too mild a word. I literally did not have the energy to process thoughts with my brain or move a single muscle for many years. I still do not have the energy to speak, walk, work on very much even in bed, or have company in my room because it requires too much energy in processing everything that is going on. "Total body shut down" would be a better phrase because you are at a point where your body and mind physically do not have the energy to keep going.

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis affects 4 million Americans. Twenty-five percent are estimated to be severely affected, being bedridden with little to no functioning. This population has been shown in studies to have the lowest functioning of any chronic illness, comparable to end-stage AIDS or end-stage renal failure. There is no known cause or cure though researchers have found unique abnormalities in the immune system, circulation system, ATP (energy) production, physical response to exercise, and autopsy findings report dorsal root ganglionitis - a type of inflammation of the spinal cord. The vast majority of severe patients are bed-bound for decades. It is estimated that 4% of those with severe ME/CFS have any type of recovery.

To die of this illness is atypical; however, to hover in an in-between state where one experiences a 'living death' for years or decades is quite typical.

Despite the ravages of ME/CFS, it is one of the least funded illnesses. Multiple Sclerosis is thought to be on average less severe in it's impact on patients' quality of life, and effects half the number of people. Yet it receives 100 million dollars per year from the Government for research while ME/CFS received $15 million last year. HIV receives $28 billion per year. With so little funding, there is no hope for the millions of people suffering from this illness.

"My H.I.V. patients for the most part are healthy and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or care for their families... I split my clinical time between the two illnesses [AIDS and CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million [to 4 million] people in the United States alone, has had a small fraction of the research dollars directed towards it." —Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami

"[CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades." —Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University

As a nation, we need to invest in ME/CFS. It costs America an estimated 25 billion dollars per year in lost productivity and medical care. ME/CFS destroys millions of lives, tears families apart and shatters dreams as people are isolated in bedrooms, nursing homes or left homeless with very little medical or societal understanding or support. All genders, races, ages, and socio-economic backgrounds are effected. Anyone could wind up sick and just drop off the map. And we will likely loose everything that person would have become or contributed to the world.

To learn more about ME/CFS please visit the ME/CFS page on my website here

Whitney Dafoe
Severe ME/CFS patient, artist, creative, and advocate