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ArtSunday: "trapped in our bodies" – coping with CFS through photography
Tuesday 3 April 2012
There are an unusually high number of suicides in those with Chronic Fatigue, and I can understand why. Combine the physical problems with the mental ones, plus society’s blaming you for your own disease and you have a perfect storm of hopelessness. Sometimes I think of Chronic Fatigue as nature’s form of water torture. Anyone can endure a little while of it; a day, a week, but as it drags into months and years… it can become unbearable.
At some point in either my late teens or early twenties, I developed Chronic Fatigue Syndrome. It was an insidious slide down into the disease. It crept up gradually, and I was in denial for years before I finally admitted I had it. I can only remember one time in recent memory that I didn’t feel the oppressive burden of dragging, deadweight fatigue. At the beginning of 2011, I had a nasty, infected cat bite which required antibiotics and steroids to treat. For three days on the steroids, I felt normal. I felt good. And then it slipped away again.
While calling the illness Chronic Fatigue is certainly a step up from the “yuppie flu,” as it used to be known, it really doesn’t capture the essence of it. Calling it “Chronic Fatigue” brings to mind fragile,Victorian ladies with too-tightly-laced corsets who need to have constant access to fainting couches because they are just so delicate. The reality is that we’re constantly being crushed under the burden of our tiredness. There is no escape from it. There is no respite. You are just bone-weary, soul-breakingly exhausted every day. Every day. Every day.
Chronic Fatigue is an illness which is still mostly not understood, either by the medical community or by the population in general. Currently, the best guess seems to be that it is an auto immune disorder, which would make sense to me from how I have experienced it. My body is attacking itself in a continual state of civil war. My immune system is compromised, and my body damages quickly and takes far longer to heal than normal. My muscles get strained over things that seem absurd, like driving my car, or cleaning the toilet. Activities which should not result in months-long aching muscles which refuse to ever quite heal. In a bitter irony, though I go through every day continually exhausted, sleep remains elusive. I go to bed at night and lay awake for hours, despite every pill, supplement and treatment I have tried.
We are trapped in our bodies, longing to be free and partake in the activities we once loved. I have missed so many dinners, parties, and celebrations. I have lost jobs and friendships and opportunities because of this illness. I am forced to live an exceptionally quiet life, and ration out my remaining energy as frugally as Scrooge. No energy can be wasted; I have none to spare.
Yet, as bleak as the future often looks for us, there are faint glimmers of hope. The medical community is slowly, achingly slowly, coming around to the idea that this is a real, physical condition. There are trials being done, mostly in countries outside of the US, where they are a bit more open-minded about what constitutes a disease, and some have shown positive results. I don’t know if any kind of treatment, let alone a cure, will be found in my lifetime. But I am cautiously, guardedly hopeful about it. Because the only other option is to completely give up hope and become another statistic about the high rate of suicides in Chronic Fatigue sufferers. I am not willing to do that.
In some ways, there seems to be very little I can do to help myself or the other sufferers. But what I can do is create art. It is a small thing, and it may sound impossibly lacking in usefulness, but I have found that it is the greatest weapon I possess. That’s why I started my photo series on Chronic Fatigue, called “Enchanted Sleep.” I wanted not only to document what we with Chronic Fatigue feel and go through, I wanted to do it in a way that healthy people could relate to. I wanted to validate our experiences and reflect them in a visceral way to those who had never felt them.
The series has been a challenge. I am only using models for it who have either Chronic Fatigue, or our sister disease, Fibromyalgia. That, of course, adds in difficulties of not only finding models with the illnesses, but finding times when both they and I are feeling well enough to go out and take some photos. Many of the images in this series are self portraits, not only because of the convenience of using myself as a model, but because it gives me a chance to channel my anger and sadness and frustration into something positive. Something that might help another sufferer. Something that might finally make it click for someone who has never understood before.
In the end, it comes down to hope. While I try to busy my mind and not think much about medical treatments or cures, I cannot not hope for them. Even if I bury the desire, it is there; a quiet, small ember in the core of my being. If I had no hope, there would be no art, no series. I have to hope that my photos will not only make the sufferers feel validated and understood, but increase awareness in society in general. I have to hope that someday, the population will not accuse us of not trying hard enough. I have to hope that the medical community will not misdiagnose me as depressed and anxious, and try and sweep me under the collective rug. I have to hope that some day I will feel better. I have to hope that eventually, we will all be made well again.
These are my dreams. And while sleep may forever remain an elusive, fickle beast, unwilling to be tamed, I always have my dreams. No sickness, no doctor, no day so steeped in weariness that I break down and sob, can take them away. They are mine to shelter and share. And I hope they have touched you too.
Sarah Allegra is a Los Angeles-based fine art photographer specializing in conceptual and self-portrait imagery. A self-taught photographer, she has also indulged in other forms of artistic expression – from painting to songwriting – since she could first hold a crayon. Her photography is darkly mysterious, deeply symbolic and other-worldly. Drawing inspiration from music, books, fairy tales and her own personal demons, she strives to tell compelling stories and express real emotions through her work.
Her work can be seen at her site, sarahallegra.com.
The above, with comments, originally appeared here.
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