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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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First things first: the light.  Let’s get to the winner of The Blue Ribbon!  Drum roll please…

Congratulations, Brittany D. Perkins!!!  You have won a beautiful, 10″ x 15″ print of  The Blue Ribbon!.  Your print will come on beautiful, shimmering, pearlized, archival paper and will be hand-signed.  Please send an email to me at sarah@sarahallegra.com with your mailing address and I’ll get it to you!

What do you guys think?  Was that fun?  Something we should do again?  Did the tweeting format work for you?  Let me know your thoughts and I can fine-tune my contest process to make it better for everyone!  Don’t forget that my fundraising will continue for the entire month of May, so stock up on your art purchases now while they’ll do the most good!

Now, onto the shadows of this post….

The Exiled King Preview

The Exiled King Preview

You remember how I hinted that DreamWorld‘s first dark character was coming to life?  He has arrived.

I think I was telling you guys about the evolution of this character.  I’ve always had a thing for horns and antlers on people (see my very first self portrait as proof) and wanted to work them into DreamWorld from the beginning.  As with most mythologies, I felt there was room for a Puckish, trickster character, which is what I had in mind when I started constructing this creature.  The beginning of my work on him coincided with the beginning of True Detective, a pure coincidence, but True Detective’s ominous Yellow King bled into my concept, and before I knew it my trickster had transformed beyond a mere Puck or even Loki into the DreamWorld version of The King In Yellow.

DreamWorld is an ever-evolving place, and while this King is the first sinister character to be portrayed, there are other forces at work.  We will meet them eventually.  For now, I think it is enough to know that the King in Yellow has been sent into exile by DreamWorld’s true King for trying to usurp the throne and plunge DreamWorld into darkness.  He has been foiled for now, and is thus known as they Exiled King, though some still whisper of the King in Yellow and restoring him to his rightful, dark glory along with those who seek the same goals… but I don’t worry.  The King is strong and benevolent.  And we haven’t even met the Queen yet, though we will soon.  She also rules for good, and is not to be taken lightly.

Let the whispers and secrets travel where they will.  The King in Yellow has been sent into exile as a merciful punishment, but I doubt a second grab for the throne would be met with such leniency.

Now that you know about the Exiled King, want to see how he came to life?

My initial inspiration for the antlers was the Makhor goat’s horns, such as seen in this stock image:

© Erinpackardphotography | Dreamstime.com

 

Horns are always tricky to build for human heads.  Making them stable but light, keeping them balanced on the head while trying to appear that there’s no supporting structure at all… they’re always a nightmare to make.  And I knew these ones were going to be the largest pair I’d made yet.  As usual, I dove in without a real plan and figured it out as I went.

I started with a regular headband and some strong but light wire, wrapped around itself and twisted generously onto the headband.  I began introducing the twisted shape by wrapping it around my arm a few times.

horns1

I wrapped a thin layer of newspaper over each wire frame, adding a layer of masking tape on top to help it hold its shape and smooth it.

horns 2

Looking very lop-sided at the moment

I initially tried spraying the antlers with spray adhesive to try to help smooth the antlers further, but all it really did was make it tacky, even after it had dried.  I sighed and decided I’d try and use it to my advantage by covering the antlers with a layer of metallic gold tissue paper (which smells really weird, by the way).  I filled in some of the larger dips and gaps with hot glue and added a little more tissue paper, but I knew I’d end up having to do a little smoothing to them in post production.  I don’t remember why now, but I ended up getting these finished just the evening before my morning shoot, so I didn’t have more time to tinker with them and make them absolutely perfect.

horns 4

mantle 1

You can see here the careful support structure I created literally with toothpicks and popsicle sticks broken into smaller strips.  Sometimes the most straight-forward way is the best way 🙂  They’re also reinforced with a little bit of monofilament line to help them not bow away from each other.

mantle 2

With the antlers done, I moved onto the leaf mantle.  I used approximately a billion fake leaves for this which I’d collected over several years and a number of projects.  I still found myself nearly running out by the end and had to ration them carefully.  I concentrated on the leaves around the face first, which also conveniently covered the antler’s headband and support structures.

mantle 4

A full mantle of leaves

vest

I’ve had this one vest in my “costume” supplies for a very long time and I just love it.  It looks very rugged and home-spun and fits a very wide variety of looks and styles.  I’m pretty sure it was made for someone closer to my size than Dan’s, so I quickly added extra length to it by cutting straight through the shoulder seem and building a new shoulder strap with leaves hot glued to each other.  The yard provided a wealth of beautiful acorns to choose from and use as buttons.  And don’t worry, the squirrels still had more to eat than they ever could.

leaf1

Next was the big leaf amulet.  I’d gotten this pack of huge, very realistic leaves probably two years ago and had been holding on to them, waiting for them to become useful.  Now was their time!  This heavy chain was also in my stash for similar reasons, and became a lovely chain for what would be a leaf amulet.

amulet 3

Some smaller, gold-dusted leaves, a large gold key and an amber-colored, leaf-shaped crystal finished it off.

amulet 2

Almost done!

foot 1

Leaf slipper tops

The very last thing I made were “leaf slippers,” for lack of a better word.  They were just several leaves glued together with elastic straps to help keep them on Dan’s feet; super easy!

Leaf slipper bottoms

Leaf slipper bottoms

I also cut up some strips of a golden-brown, rustic-looking cotton to tie around Dan’s sleeves and pant legs, but that would be assembled the day of.  As far as my prep work went, I was done!  I honestly can’t remember exactly how long the whole costume took to make… several days of solid work, no sleep?  Eight weeks?  I have no idea, but it was long.  When I’m deeply involved in a project like this, time melts away for any practical use.

Before I get more into this, let me back up and tell you about Dan Donohue, who so beautifully brought my character to life.   Dan is celebrated actor, best known for his extensive theater work.  He played Scar in Disney’s Broadway version of The Lion King and left for Oregon almost immediately after our shoot to go play Henry the III at the Oregon Shakespeare Festival’s version of Henry the III, as well as the father in their production of A Wrinkle In Time.  You would never believe from meeting him that he does evil and sinister so well; he is truly one of the kindest, most enthusiastic and genuinely lovely people I’ve had the pleasure of working with.  But the moment I told him to be a villain, it all fell away and for a second I had to catch my breath because he so completely embodied The King In Yellow.  Dan is a muse if I’ve ever met one and a pure delight to work with!  He’s also very creative and funny, as I’ll get into more later.

The morning of the shoot came quickly, Dan and I found our location and the entire shoot was easy and felt effortless.  There may have been a bit more effort on Dan’s part trying to keep his antlers and mantle from toppling over if he moved his head too far in any direction, but it seemed that his theater experience really paid off and helped him manage this probably cumbersome bit of costume beautifully.

Antler wrangling

Antler wrangling

Generally when I shoot new DreamWorld characters, I edit one or two images; maybe three if I feel they’re all really compelling, but in this instance I edited five.  This is almost unprecedented.  The only other time I’ve edited more photos from a single concept, with no costume or location changes was for the Katie’s World set.  That says quite a lot about how perfectly Dan was able to become the Exiled King.  But enough talking about them.  You want to see the images, right?

You’ve seen this first one already since I used it to tease the series, but I’m posting it again so the whole set can be seen together as intended.  To set the mood, here are the two quotes which most directly influenced how I took the set, one from Robert W. Chamber’s book The King In Yellow and one from True Detective.

Along the shore the cloud waves break,
The twin suns sink beneath the lake,
The shadows lengthen

In Carcosa.
Strange is the night where black stars rise,
And strange moons circle through the skies
But stranger still is

Lost Carcosa.
Songs that the Hyades shall sing,
Where flap the tatters of the King,
Must die unheard in

Dim Carcosa.
Song of my soul, my voice is dead;
Die thou, unsung, as tears unshed
Shall dry and die in

Lost Carcosa.
–Cassilda’s Song, The King In Yellow by Robert W. Chambers
“Him who eats time.  Him robes; it’s a wind of invisible voices.  Rejoice, death is not the end!  Rejoice, death is not the end!  Rejoice, Carcosa!”
– Miss Delores, True Detective episode 7, After You’ve Gone
The Shadows Lengthen

The Shadows Lengthen

 

The Shadows Lengthen

The Shadows Lengthen – detail

The Shadows Lengthen

The Shadows Lengthen – detail.  Dan’s hand here kills me every time, it’s SO PERFECT.  I never knew a single hand could be so expressive, yet it is.

 

Pliable Reality

Pliable Reality – shot using a home-made “Lensbaby” which was the top of a water bottle

Pliable Reality - detail

Pliable Reality – detail

Pliable Reality - detail

Pliable Reality – detail

Pliable Reality - detail

Pliable Reality – detail

 

Where Black Stars Rise

Where Black Stars Rise

Where Black Stars Rise - detail

Where Black Stars Rise – detail

Where Black Stars Rise - detail

Where Black Stars Rise – detail

Where Black Stars Rise - detail

Where Black Stars Rise – detail

The Tatters Of The King

The Tatters Of The King

The Tatters Of The King - detail

The Tatters Of The King – detail

The Tatters Of The King - detail

The Tatters Of The King – detail

And perhaps my favorite of them all….

His Robe Is A Wind of Invisible Voices

His Robe Is A Wind of Invisible Voices

His Robe Is A Wind of Invisible Voices - detail

His Robe Is A Wind of Invisible Voices – detail

His Robe Is A Wind of Invisible Voices - detail

His Robe Is A Wind of Invisible Voices – detail

His Robe Is A Wind of Invisible Voices - detail

His Robe Is A Wind of Invisible Voices – detail

His Robe Is A Wind of Invisible Voices - detail

His Robe Is A Wind of Invisible Voices – detail

 

Whew, still with me?  I know that was a long post, but I had a lot of photos to cover!

He's not REALLY evil, he just pretends really well!

He’s not REALLY evil, he just pretends really well!

The only sad thing is that we never got to see how well Dan managed his leaf slippers, but trust me, he killed it like everything else.

The only sad thing is that we never got to see how well Dan managed his leaf slippers, but trust me, he killed it like everything else.

To wrap up, I’ll leave you with a couple fun things.  Dan does these really fun recreations of scenes from movies, hunting down the original locations and taking photos!  Dan’s spoof of Anthony Hopkin’s letter to Bryan Cranston about Breaking Bad (read the original letter here).  Doesn’t Dan sound exactly like Anthony Hopkins?  And lastly, if you have a chance to go see him perform at the Oregon Shakespeare Festival, do it!  You won’t be disappointed!

Dan as Richard the III - Copyright Oregon Shakespeare Festival

Dan as Richard the III – Copyright Oregon Shakespeare Festival

Thank you so much to Dan for being the perfect King in Yellow and furthermore being extremely patient as I slowly edited all of these!!  Hopefully we won’t have to wait too long to see the Exiled King’s companions and cohorts!  Dan has been invited back again whenever he returns to California, so he may pop up in more photos; I hope so  🙂

 

Us

 

*****

 

For the month of May, I am donating 50 percent of profits from all my sales to The Microbe Discovery Project, a group working to solve the mystery of ME and find a cure for those afflicted.  And what do I sell?  Well, what do you want?  Because my images come from the frameable to the wearable and in every price range.
museum-quality, fine art prints
iPad/iPhone/iPod covers
stickers
blank greeting cards
post cards
shirts and hoodies
wearable art
throw pillows
INTROSPECTIVE: my eight-week, on-line, course of self-discovery through photography.

 

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