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Shades Of Sleep: Invisible Illness Day

Sometimes I get a little daunted when May 12th rolls around each year, wondering what new I can say about the subject.  If you didn’t know, May 12th is Invisible Illness Day; a day to bring attention and awareness to illnesses and diseases which don’t manifest obvious outward symptoms for the world to see.  If someone has the measles or is in a wheelchair, you can hopefully tell that just by looking at them.  Diseases like fibromyalgia*, Chronic Fatigue Syndrome*, Crohn’s Disease, multiple sclerosis, mental health problems, Complex Regional Pain Syndrome7, Celiac Disease, lupus, rheumatoid arthritis, Lyme disease and the one I have, myalgic encephalomyelitis* (ME for short) are considered invisible illnesses.  This is by no means a comprehensive list, just a few examples.

Shades Trio

According to Wikipedia and the 2002 US Census Bureau, 96% of chronic illnesses are invisible.  This adds in an enormous extra challenge in obtaining proper medical care and treatment as well as being misunderstood by the population in general.  If people don’t know that there are quiet, private, hellish wars being fought every day by millions of people all over the world, how can we ever expect our treatment to improve, let alone find cures?

That’s why May 12th is so important.  We, the sick, need people to understand, to care, to help us advocate when our treacherous bodies won’t allow us to.  Awareness is the critical first step in any change happening.

Why is it so important that we treat ME?  What makes our disease so special?

It can be fatal.  People die from this.  If not from the disease ravaging our bodies for years and decades, then it often comes by our own hands as we can no longer endure the daily torment.

No one should have to live like this.  As someone who has what’s considered only a “moderate” case of ME, I can tell you it’s a living hell.  Pain is nearly constant, sometimes to the point where I’m in tears and desperately wishing to die.  It takes away the plans you had for a normal, fulfilling life.  Careers, hobbies and passions are taken from you.  You either simply cannot expend the energy on anything non-essential, you lack the basic funds to sustain most pursuits because most of us can’t work, or your brain is compromised by what we call “brain fog” and you’re unable to focus on and accomplish anything.  (More on brain fog later.)

We deserve to live happy, fulfilling lives, just like everyone else.  When you’re constantly in pain, always exhausted and unable to think clearly, this doesn’t leave much room for whatever kind of life you wanted for yourself.  And when I say exhausted, I don’t mean that we’re tired because we didn’t sleep well the night before.  On a good day for me, it’s like how other people when they have the flu.  A constant, crushing weight that makes the slightest exertion a Herculean effort.  On bad days all I can do is lay in bed and drag myself to the bathroom periodically.  Sometimes even feeding myself is a challenge.  I might have to choose between feeding my animals or myself, because I don’t have the energy for both.  And of course the animals always win; they’re my responsibility.

I am mostly house-bound and I require help with the sort of tasks I used to take for granted.  Forgot something at the store?  No problem, just go back tomorrow!  Nope, not with ME.  Any time I take a trip outside my home, I have to plan at least one full day of recovering at home from it.  If it’s something late at night, very noisy and extra stimulating, plan on 2-3 days at least.  (But frankly, late night, noisy, stimulating activities happen EXTREMELY rarely because of the damage they cause later.)  When I do gather my strength to photograph models, that is my exertion for the entire week at least.

ME is extremely isolating.  You can’t just go hang out with friends.  You can rarely make it to family functions.  Last year, I had to miss a surprise party thrown for my own mother, something which still upsets me today.  I was just too exhausted to go, and I knew that if I REALLY pushed myself and forced myself to go, I would pay for it for a very long time.

ME is vengeful god.  If you violate any of its insane decrees, you WILL be punished.  Probably for a long time; sometimes forever.  There have been cases where someone with ME did just a little too much one day, they spent the next day in bed… and then they were never able to leave it.  At the same time though, if you try and do as little as possible, your energy supply will shrink and you’ll be worse off too.  Damned if you do, damned if you don’t.

Right now ME received approximately 5 million dollars a year in funding from the US government.  To put that in perspective, that’s about the same amount given to researching hayfever.  Male pattern baldness gets at least four times as much.  HIV/AIDS, which is comparable in both frequency in the population and severity of illness, gets about 600 times that amount.  I’m not saying that HIV/AIDS patients shouldn’t receive that much; I think they should!  What I’m saying is that ME needs to be recognized at all levels of society and government as the deadly, hellish disease that it is and get proper funding as well.

This year I decided to do something that was a big stretch for me physically.  I planned a set of self portraits (all shot at the same time) with a rather complicated makeup look for my Enchanted Sleep series on living with ME.  Doing that much makeup on myself normally would have been enough exertion for one day for me, but that plus shooting the images, even with Geoff’s generous help, put me in bed for days afterward with migraines pounding my head.  But I’m not sorry.  It was worth it.

Oh yes, brain fog.  (Which I’ve got a bit of as I’m writing this.)  It’s like when you have a fever and can’t concentrate or think clearly.  Sometimes it reaches new heights where people suddenly can’t spell, remember their names or understand their native language.  Most days it’s more like mentally wading through a bog, at least for me.  I decided I wanted to portray this visually in the images I created since it’s such an annoyance at best and terrifying at its worst.  I think it will be obvious how I incorporated that element into the images.

I have the video I took of me applying the makeup as well as the finished photos to show you, but I want to issue a challenge as well!  I want you: you, who are reading this right now, to #GoBlue4ME!  Why blue?  Because that’s our disease’s awareness ribbon color.  What does “going blue” mean?  There are any number of things you could do to go blue.  I created a couple images that you could use as your profile photos for May 12th, or even this whole week (or more!).  You are more than welcome to download them and use them however you’d like!  You could dress all in blue and post a photo of yourself with the #GoBlue4ME hashtag on any of your social media accounts.  You could get a bunch of blue balloons, take a photo of them and use the hashtag on them too; anything blue works!

For makeup artists, I’m issuing a special challenge.  As you’ll see in my video applying my makeup, I used ONLY blue shades for this entire look.  Foundation, concealer, eyeshadows, blush, mascara, EVERYTHING.  I challenge you all to do the same and post your looks using the #GoBlue4ME hashtag!  If you’re on YouTube and create makeup tutorial videos, this would be perfect for you.  There are so many fun makeup challenges going around YouTube, Instagram and other social media sites; let’s make this the next big trend!  You’ll not only be stretching yourself, you’ll be contributing to a wonderful cause and helping us raise awareness for the whole world!

I did allow myself to use shades of teal, green and purple in my look because they’re offshoots of blue and I really thought it would make for a better overall look, so feel free to do the same.  And you don’t have to make the blue tie into your foundation color as well, but bonus points to you if you do. 🙂  Let’s have some fun, create gorgeous looks and help a community in need of a lot of support by coming together!

Ready to see the video and my images?  Here you go!  I’ll be releasing the images individually over the course of the week leading up to May 12th, but you can always find them all here.

And please, pass these around!  Share the links, video and images with anyone and everyone!  We have to make a lot of noise to get the change we so desperately need.  You have my full permission to share far and wide!

And please, if you take up the #GoBlue4ME challenge, let me know!  Of course, I can search the hashtag and see what you guys have been up to, but I’m very excited to see what you come up with!

One last note, your going blue does NOT need to happen on or before May 12th.  Keep doing it as long as you’d like to!  The longer we can keep the word spreading, the better.

Thank you to absolutely everyone who has and will participate in this!  You are helping so many more people than you know.  I thank you from the deepest wells of my heart.

Download these images and make them your profile photos for a day!

ME avatar 1

ME avatar 2

Shades of Sleep

Shades of Sleep, © Sarah Allegra.  A self portrait about brain fog and living with myalgic encephalomyelitis.

Shaed of Dreams

Shades of Dreams, © Sarah Allegra.  A self portrait about brain fog and living with myalgic encephalomyelitis.

Shades of Blur

Shades of Blur, © Sarah Allegra.  A self portrait about brain fog and living with myalgic encephalomyelitis.

*[There are various theories and arguments about weather ME, CFS and fibromyalgia are all the same disease or separate.  You’ll find as many different opinions as there are sufferers.  It is my personal belief that they’re probably all the same thing, or at least all very closely related.  Some people are extremely militant about using the “correct” name; I find it more important to help people understand by using the name they’re most familiar with.  I tend to use them all interchangeably depending on the situation and who I’m talking to, but if I had my druthers, I’d simply call it ME and be done with it.]

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This is one of those things that built up slowly in my head for a while, then suddenly crystallized with numerous people and sources suddenly (unaware of each other) all started giving me the same advice.  After some thought, and a little bit of regret, I’ve decided that they are right and I need to make some changes in how I approach my art.

I need to slow down.  This is very hard for me to do; art is my obsession and I want nothing more than to be producing all that I can as often as I can.

I also need to set my focus more narrowly on DreamWorld.  There is SO MUCH that you guys have no idea about yet, and I need to get to the place where I CAN show you all that stuff!

The thing is, I have to accept that for the time being, I have very limited supplies of time, energy and money.  I’m hopeful, of course, that I will eventually start feeling better, but for now, I have to accept that this how things are right now.  My energy and time allowances have shrunk every year since I first came down with ME.  My chronic pain, daily headaches and frequent migraines don’t help anything.  Since I’m dealing with far, far fewer productive hours in the day than your average person has, I need to hoard them and make the absolute most that I can with them.  None of those minutes can be wasted.

I’m still weighing things, but I may (for now at least) not edit every shoot on my hard drive.  Don’t despair, models waiting for images, I’m not saying none of them will be edited, I just have to really pare things down and only spend the time editing images which I REALLY love.

This also means that I’ll probably be putting out fewer images per year.  This makes me sad, and is the main source of my resistance to the idea of slowing down.  It’s really hard to watch all my friends and colleagues churn out fantastic image after fantastic image and have nothing even on the radar to be shown soon.  You get used to a certain amount of being left behind by the rest of the world when you’re always sick, but it doesn’t make it sting less each new time you feel it.  I love getting to show you guy a new piece!  It’s usually the highlight of my week when I post an image.  🙂  But despite this, I know that this is the right thing for me to do now.

I’m also making some big changes with a lot of DreamWorld concepts; changes which will make the images I do create even better and more impactful, but which requires quite a lot of work on my end which and won’t produce anything I can show you guys, even as a work-in-progress sort of thing.  On one hand, I feel dangerously close to being forgotten and left behind while other artists quickly turn out magnificent pieces… but again, I know that I need to do this preliminary work.  It’s going to have a ripple effect through all of DreamWorld and the images which come from it will be better than ever!  I hope you guys will be patient and not forget about me or DreamWorld in the periods when I have nothing new to show.  🙂

Thank you all for the love and support you have shown me and my work over the years.  It really means so much more than I can say!  I am so grateful for every single person who enjoys and follows my work.  Even if I can’t put out as many images as I have in the past, I can make sure that the ones I do create are the BEST that I can do.  It may frustrate me sometimes, but the extra work I’m pouring into DreamWorld is only going to make it better, brighter, tighter, more emotional and more meaningful.  Thank you for bearing with me.

You’ll notice there isn’t a new image with this post; that’s kind of the point!

And thank you, as always, to Geoff for being an unending font of wisdom, clarity and sage advice.  🙂

A Strange New World

A Strange New World © Sarah Allegra. A self portrait, one of the first images I shot for DreamWorld. I imagine this girl has just returned to our world after years of journeying through DreamWorld only to find that not a day has passed, much like Narnia. 🙂

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I have had this image in my head for about four or five years and the timing was just never quite right for it.  Thankfully, since I’ve been working with the multi-talented Travis Weinand, I had the chance to do it the way I’d been picturing it for so long!

Are you all familiar with the Tiananmen Square Massacre in 1989?  I’ll give you a rough summary of events.  Some of the details still remain repressed though, such as the number of people actually killed, but I’ll do my best.

In April of 1989, the death of Hu Yaobang, the former Communist Party General Secretary triggered massive protests calling for political reform.  The protests began peacefully and were led mostly by university students, who gathered in Tiananmen Square to mourn and protest.  This went on for several weeks and some of the students took to hunger strikes to express their desire for reform.  Since the entire incident has been so thoroughly repressed, it’s hard to get an inside take on what was happening in the minds of the Chinese government – you can’t very well ask about an event which never officially happened.

However, after the protests went on for weeks and showed no signs of slowing, Chinese leaders decided force was called for to disperse the protesters.  Marshall law was declared, approximately 250,000 troops were sent in; given permission to use lethal force if necessary.

And, as is so often the case, once lethal force has been approved, means for using it will be found.

By June 5th, the heavily outnumbered and out-armed protesters had been largely slaughtered.  Exact numbers remain unknown; official records report 200-300 died; earlier reports fro the Chinese Red Cross on the morning of the 4th recorded 2,600 deaths, which was later retracted.  Regardless, the students stood no chance against an armed and deadly militia with orders to make them go away, whatever it took.

And then we come to June 5th.

After weeks of unrest leading to a brutally bloody and deadly fever pitch, by the 5th, one man, at least, had had enough.  As the tanks came rolling into the square to continue to get rid of the protestors, one man made his stand in a way which still shocks and awes people today.

With nothing more than a few shopping bags in his hands, he stood in the tanks’ path and forced them to stop.  The tanks tried to maneuver around him, he stepped back in front of them.  After the massacre he had surely witnessed over the past several days, this goes beyond mere heroism.  This was fearlessness.  He was angry, and no matter that the tanks could have kept rolling and ran him over, or they could have chosen to shoot him as soon as he came into view, he stood.  And for minutes, a single man stopped an entire line of tanks.

At one point he even climbs on top of the tank, bangs on it and demands to speak to the person in charge.  After a few minutes, a group of people, who seem to be protesters also, join him and hustle him out of the way, probably fearing, with good reason, for his life.

No one knows who this man is.  The world has called him Tank Man, a fitting name.  We don’t know what happened to him.  Was he arrested, was he killed, or did he simply never know the incredible impact his act of sheer bravery had on the world?  With the extend to which the massacre has been suppressed in China, it’s quite possible he never knew his act was recorded or that it became famous.  I would love to know what happened to him, but so far no one has come forward claiming to be Tank Man or knowing who he is.

One man against a line of tanks.  He knew the events of the days before and how deadly the protests had become.  He knew that he would likely be shot or run over.

But his one act of peaceful, quiet defiance stopped an army.

That is what I wanted to celebrate in my image with Travis.  I wrapped a mantle of white flowers around his shoulders, both to symbolize purity and peace, which we typically associate them with in America, and also for its association with death in the Chinese culture.  I instructed Travis to be quietly, peacefully strong, but unshakeable, and rolled up a piece of craft foam into a tube to shoot the image through, as if you were looking down the barrel of the tank at him.  I climbed a ladder to get a view where I’d be higher up than Travis (not as easy as you’d think since he’s so tall and I’m so short!) and shot away.  Travis perfectly embodied the exact emotion and look that I’d asked for.  It doesn’t get better than that.

I hope that Tank Man is alive and well.  I hope that he knows the impact his defiance had on the world.  I hope we discover some day who he is.  Until then, he will be Tank Man, the many who stopped an army.

Tank Man © Sarah Allegra

Tank Man © Sarah Allegra

Tank Man © Sarah Allegra - detail

Tank Man © Sarah Allegra – detail

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Time for another DreamWorld character!

The Eye Of The Storm - detail

The Eye Of The Storm – detail

I like to think of the Storm-Bringer as the counterpoint to the Wind Goddess:

Where Earth Meets The Sky

Where Earth Meets The Sky

They have similar powers and both rule over the sky, but one brings the weather we like, while the other brings that which we don’t like.  Which is not to say that the Storm-Bringer is an evil character; not at all.  Storms are useful to the world in a variety of ways; bringing rain is just one of them.  While me might prefer one over the other, both are needed and they balance each other.

This image was actually not one I’d set out to create.  Katie and I were shooting something else entirely, which had nothing to do with DreamWord, but when I sorted through the raw images, one of them really caught my eye.  I was shooting about Katie (from the second story of my mom’s house) and an image where she was flipping her hair around sparked something in me.  I looked at the next few frames where her hair continued its circular flip and thought it would look cool if I blended them all together.

Just for the hell of it, I brought the images into Photoshop and started playing around… and I played some more… and some more, and then I had a finished piece which I really loved!  As I looked at the finished image, I realized I’d created a new DreamWorld character without having planned it, but her story quickly formed inside my head.

We cannot have a world where there are only beautiful, sunny days.  Even an imaginary world.  The dark needs the light and the light needs the shadow, otherwise it would be a flat, saccharine depthless place.  DreamWorld started initially as an escape, and more importantly, not something I expected to turn into such a long, rich, detailed place as it has.  It is still my escape, but I can now fill in some of the darker areas along with the joy and sunlight.  A story isn’t a story without a conflict, without a villain.  Using a religious metaphor pioneered by Carl Jung and Joseph Campbell, a trinity (father, son, holy spirit) is inherently incomplete.  And one more facet to it, making it a quaternity (father, son, holy spirit and devil) and it becomes complete and self-sustaining.  The dark and the storms enhance the light, but the light will always defeat the dark.

Though, if we’re speaking purely of wish-fulfillment, I would never have a bright, sunny day.  I would fit in very well somewhere like Portland or Seattle, since my favorite days are the gray, overcast ones, a little on the cool side.  In my perfect world, every day would be like that, but even I realize the need for a storm now and then to shake things up 🙂

Check out the making-of gif below the main image!

The Eye Of The Storm

The Eye Of The Storm

The Eye Of The Storm gif

The Eye Of The Storm gif

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