We are honored to share this touching and artistic photo series and the story behind it. ViewBug community member sarahallegra shot this inspiring set of images and shares her life story. The series is called Enchanted Sleep and it portrays what living with myalgic encephalomyelitis/Chronic Fatigue Syndrome is all about. "I have been taking photographs seriously for the past six years; in fact, I just passed my sixth “photography birthday” recently" - Sarahllegra


Silenced



Seven years ago, I became sick with myalgic encephalomyelitis (or ME). At the moment, its name in the United States is in flux; it's been called Chronic Fatigue Syndrome (CFS) since the late 80's, and the Institute of Medicine recently proposed a new name, along with new diagnostic criteria, in early February. If the IOM's suggestions are taken, ME/CFS would be called SEID: Systemic Exertion Intolerance Disease. Most patients strongly prefer ME as its name is rooted in science and it accurately describes our symptoms (and hints at a probable cause), but patients' wishes are rarely taken into consideration in situations like this.

Whatever our name will be officially, I will still call it ME. Its name is so shifting and nebulous, it is also frequently confused or combined with fibromyalgia. If you asked six of my doctors what my illness is, you would probably get six different answers. It's frustrating, but I also know the truth; what I have is ME.

 

The Blue Ribbon


Inside Looking Out


Martyrs To A Name



ME is characterized by several main symptoms and is believed to have a neurological basis; a theory which is gaining more and more proof as time goes on. Muscle pain, new or worsening headaches and/or migraines, sudden memory problems (often called “brain fog;” this can be suddenly forgetting what you walked into the room for, your dog's name or, more frighteningly, how to read). A new clumsiness is frequently seen, and all the five senses of your body seem to be turned up to 11 in your brain. Sounds are booming, smells overwhelming, lights are blinding. Any exertion, physical or mental, will drain you; sometimes for hours or days... sometimes weeks or months, and occasionally, forever.

ME is also likely to be connected to to the immune system, with our immune systems constantly stuck in “on,” fighting off both the germs it's supposed to defend us from as well as waging war against our own bodies. Between the havoc ME wreaks on our brains and our bodies, we are overwhelmingly exhausted most days. About 25% of patients with severe cases of ME are completely bed-bound, unable to care for themselves in the most basic ways. They depend on caretakers for every bathroom break, each piece of food they eat; they are unable to tolerate the slightest light or noise, they are in constant pain. They live in silent, lightless rooms on morphine drips just waiting to die. And this condition can last for decades.

I am somewhere within the “moderate” ME scale. I cannot work a regular job, but I can leave the house on my own a couple times a week. If someone else is driving, I might be able to leave the house a few more times. But every effort put out, whether physical or emotional, will be repaid with pain and exhaustion later, so you must horde your energy and expend it very wisely.

 

A Fading Girl



Despite these very real, validated and sometimes horrifying symptoms, the public still often sees us as fakers, as trying to get a free ride or attention. ME was called “the yuppie flu” behind our backs for many years, now the anonymity of the internet is emboldening people to call it “fat, lazy housewife disease” to our faces. I can assure you it is none of these things. Not any among us would wish this upon our worst enemies (even the ones calling us fat, lazy housewives). We have lost careers, livelihoods, relationships; our lives have been stripped away from us piece by piece and still many refuse to believe we are ill because we do not outwardly look very different than we did before. This disease can be very cruel.

To combat this wealth of popular misinformation, I started my series Enchanted Sleep to visually portray what living with ME is like. I have found that art has a way of cutting to the core of the matter and explaining concepts where words fail. The images hit people in a much more visceral way than if I carefully went over my daily symptoms one by one. This is the power of art.

My very first image of the series was a self portrait I took not long after first receiving my diagnosis. It was a heavy blow; there was no cure, the cause was unknown and there were no good treatments. Not much has changed in seven years. My grief and frustration came together in an image titled Incurable, showing the myriad of medications and supplements which were making up my daily life then as I tried desperately to stay in control of my body. The reaction to that one image had was eye-opening to me as a new photographer and it showed me just how powerful a tool this could be in my own campaign of raising awareness.

In Between Awake And Asleep


We Rise Again 900



I did not shoot Incurable with the intention of creating a series around it, but it quickly became clear to me that such a series was needed. Though there are many, many artists with ME, along the entire severity spectrum, it is hard to find much art created by those artists since just living can use up most of our resources.

But to me, art has always been as vital to me as air and water; I cannot be alive without at least attempting to create art. So I took more photos for the series. I tried to capture the most common symptoms and portray them in a way which would be immediately obvious, even to a viewer who had never been sick a day in his life. I'm proud to say that this series has helped change many skeptics' opinions and brought more attention to our little-known and very misunderstood disease.

Exoskeletonation



My favorite, most symbolic image in the series is another self portrait. It shows a black, iron cage growing out of my chest and weaving through my body, in and out through my skin. Over my heart rest a few flowers; wilted and slightly browned, but not dead. A few petals fall from one hand. To me, this image sums up ME perfectly. My body often feels much more life a prison than a vehicle I navigate life with. It is an unjust cage, a harsh, cold metal which I have no means to stop from coursing through me. The soft colors and flowers hint at the delicate state of my body. The flowers show the ravages of the disease with their browned, drooping edges and falling petals... but they also show something else. Despite being surrounded by an iron cage, they continue to live. They thrive as best they can in their circumstances. And they still bring beauty to the world.

ME can try to cage me, but it will never stop me from fighting it or creating art. Those are beyond even its reach.
For more information, please see: https://sarahallegra.com/ME.html