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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.

 

Read Full Post »

Ok, guys!  You have one more day to enter the print giveaway and win your own FREE, archival, shimmery, pearlized print of The Blue Ribbon, so get those entries in!  Entering couldn’t be easier.  Simply tweet one of the ME facts below, making SURE to use the hashtags, and you’re in!  That’s it!

 

The Blue Ribbon

The Blue Ribbon, model: Katie Johnson – enter the giveaway to win a print of this image!

Ready to tweet?  Use any of the following!

Curing baldness gets 4x more funding than ME/CFS, but no one ever died of baldness    

*****

ME/CFS knows no social or economic boundaries; it affects all equally w/out mercy.    
*****
ME/CFS in not in our heads & cannot be cured with exercise & a better attitude.    
*****
ME/CFS is not a “female” disease; 20% of sufferers are male.    
*****
ME/CFS isn’t just about being “tired,” it ravages every single part of the body.    
*****

ME/CFS can be just as deadly as MS, HIV and AIDS, yet it is largely ignored.    

*****

More exercise and a better attitude will not cure ME/CFS.    

*****

We’re not chronically fatigued, @CDCgov. We have myalgic encephalomyelitis.    

Tweeting multiple statements will count as extra entries, so enter as many times as you like.  However, tweeting the same statement multiple times will not count.  And that will probably just annoy the people reading your feed, so don’t do it. 😉

I will choose a random winner from all entries on May 20th and announce the winner here!  Stay tuned!

Thank you to everyone for reading and participating!

Read Full Post »

***Want to win a free print of my latest image, The Blue Ribbon?  Read on to find out how you can enter!!***

ME Awareness Week continues!  Catch up on the story with the first, second and third posts!

Spoon Theory - a self portrait

Spoon Theory – a self portrait

For anyone not convinced of the seriousness of ME, let me present you with a quote from Dr. Nancy G. Klimas in a Q & A article from The New York Times on Chronic Fatigue Syndrome.  Dr. Klimas serves on the board of directors for The International Association for Chronic Fatigue Syndrome and treats both CFS patients as well as patients with HIV and AIDS.  In 2009, she made a comment comparing CFS to HIV and AIDS.  A reader expressed anger over her comment, calling it alarmist and saying it was making CFS sound like a much more deadly disease than it is.  Dr. Kilmas had this to say [emphasis mine]:

“…But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale 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 participate in the care of their families.

I split my clinical time between the two illnesses, 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 people in the United States alone, has had a small fraction of the research dollars directed towards it.”

In Between Awake And Asleep - a self portrait

In Between Awake And Asleep – a self portrait

This is the point in my explanations where I like to remind people (and myself) that I am lucky; I am on the mild-to-moderate end of the ME illness spectrum.  It can get much, much worse.  There are thousands of people afflicted with severe ME, on constant morphine drips, in agonizing pain, earplugs in every second of the day, unable to tolerate the slightest light or sound, unable to feed or dress themselves or even use the bathroom on their own.  People die from ME.  That is why it is so very, very dangerous when the medical community trivializes our disease, insists it’s psychosomatic, insists there’s nothing physically wrong with us.  YES.  Yes, there is, doctors.  Those who have died from ME, and there are many, many examples, frequently show the same inflamed areas in the brain when autopsied.  While I’m not sure I’m ready to say ME is purely a neurological disease, it sure seems to be a big piece of the puzzle.

When the medical community has nothing to offer you, you become your own doctor, your own detective and your own science experiment.  You try anything and everything that might help; medications, physical therapy, diet changes, supplements, “Eastern” medicine, energy healing, modifying your sleep habits, psychotherapy; anything.  One year when I was still able to work a part-time job, I spent over a quarter of my pitiful earnings on doctor copays, medications, supplements and treatments.  That amount hasn’t changed much since then.

While there have been some setbacks recently for the ME community, there has also been forward momentum.  I know of at least two ME documentaries currently in production.  I had the chance to work with one of the films, Canary In A Coal Mine, and get involved with when it was raising funds through Kickstarter by donating the printing rights to some of my ME-themed images for them to use as backer rewards.  Everyone was shocked and delighted when the Canary film more than quadrupled its initial goal in its 30-day campaign!  I take this overwhelming support as a sign that our voices are finally starting to be heard, and that, perhaps, this indicates the winds are finally starting to change.

The Fragile Blossom That Opens In The Snow - a self portrait.  "“Courage is not the towering oak that sees storms come and go; it is the fragile blossom that opens in the snow.”  – Alice M. Swaim

The Fragile Blossom That Opens In The Snow – a self portrait. “Courage is not the towering oak that sees storms come and go; it is the fragile blossom that opens in the snow.”
– Alice M. Swaim

I never write posts about subjects like this with the intent to garner pity or complain.  That is never my intention.  What I want is to bring awareness to this extremely misunderstood, unappreciated and devastating disease by speaking frankly and candidly about it.  We are suffering and dying and there are few people who know about it and even fewer who are doing anything about it.  The squeaky wheel does get the oil.  Enough noise needs to be made and enough public outrage needs to be expressed over how the medical community (as a group; there are certainly exceptions and wonderful doctors working alongside us) is ignoring us and indeed doing harm.

It can feel daunting to attack such a huge, glass mountain.  It does not matter that you are only one person and that I am only one person.  Gandhi, Nelson Mandela and Martin Luther King Jr. were each just one person.

I genuinely believe this is a problem science could solve if enough effort was made to solve it.  At the very, very least we could find treatments to alleviate the symptoms.  We have tackled other serious diseases.  But we need the funds and we need the public to demand action.  And we need a name that isn’t dismissive and demeaning.  So this last part goes to the CDC:

Hey, CDC, change our fucking name already.

Exoskeletonation - a self portrait

Exoskeletonation – a self portrait

To do my part in raising awareness about ME, 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

Also, in honor of this day of raising awareness, I’m holding a contest to win a beautiful, 10″ x 15″, museum-quality print of my latest image, The Blue Ribbon; an underwater representation of the struggle that living with ME can be.  Your print will come on beautiful, shimmering, pearlized, archival paper.  And all you have to do is tweet!

The Blue Ribbon

The Blue Ribbon, model: Katie Johnson – enter the giveaway to win a print of this image!

Ready to tweet?  Use any of the following!

Curing baldness gets 4x more funding than ME/CFS, but no one ever died of baldness    

*****

ME/CFS knows no social or economic boundaries; it affects all equally w/out mercy.    
*****
ME/CFS in not in our heads & cannot be cured with exercise & a better attitude.    
*****
ME/CFS is not a “female” disease; 20% of sufferers are male.    
*****
ME/CFS isn’t just about being “tired,” it ravages every single part of the body.    
*****

ME/CFS can be just as deadly as MS, HIV and AIDS, yet it is largely ignored.    

*****

More exercise and a better attitude will not cure ME/CFS.    

*****

We’re not chronically fatigued, @CDCgov. We have myalgic encephalomyelitis.    

Tweeting multiple statements will count as extra entries, so enter as many times as you like.  However, tweeting the same statement multiple times will not count.  And that will probably just annoy the people reading your feed, so don’t do it. 😉  I will choose a random winner from all entries on May 20th and announce the winner here!

Catch up on the story with the first, second and third posts this week about ME.

Thank you to everyone for reading and participating!  If you have had your own experiences with ME, CFS, fibro or any other chronic illness and you’d like to share your story, please leave it in a comment!

Read Full Post »

***Want to win a free print of my latest image, The Blue Ribbon?  Read on to find out how you can enter!!***

As ME Awareness Week continues, I feel it’s time to share my personal history with this disease.  Catch up on the story with the first and second posts!

Most of you will have heard my own story about ME.  To briefly recap for anyone new to the blog, on May 27th 2008, I came down with what I thought was food poisoning.  It wasn’t fun, but I thought it would surely pass quickly.  It did not.  Everything got worse.  Looking bad, I can see signs of ME showing up as early as my teens, but it was May 27th when it really exploded.

I have not been the same since; I have not had a pain-free day in all that time.  I had three brief, beautiful days at the beginning of 2011.  I was on steroids for an infected cat bite and for those three days, I wasn’t constantly dragged down by the muddy, boggy, wet-wool, bone-deep exhaustion of ME, which I commemorated with a self portrait.  Outside of that, there has been no relief.

3 Good Days

3 Good Days – a self portrait

Though there is much controversy over the subject, and I make no claims to be any kind of expert (except about my own experiences) I believe that ME, CFS and fibro are really all the same thing.  Or, at the very least, they’re all branches of a “mother disease” which we have yet to identify.  Either way, they all seem intrinsically connected.  However, the United State’s intentionally wishy-washy definitions of CFS and fibro have led me to setting their names aside and using ME as much as possible.

ME has excellent, testable, finite guideline, though getting your doctor to agree to those tests is another matter.  ME has the most scientifically sound definition, and it’s the one I connect with most of all, since it is so specificHowever, since almost no one in the United States has heard of ME, including all of my doctors, I tend to use the names interchangeably depending on whom I’m talking to, to make it easiest for them to understand.

The hallmarks of ME include unreasonable fatigue that is disproportionate to how much you’ve exerted yourself.  For instance, I might go to the grocery store and come home feeling like a healthy person would after running a marathon.  You experience post-exertional malaise, typically worst 24 to 48 hours after said exertion.  Muscle pain is key.  Headaches and migraines common.  Neurological symptoms begin, often in the form of tripping, falling, sudden “brain fog” where it seems like your brain has turned into oatmeal, the inability to remember words, or even your own name.  Light, sound, scent, noise and touch are all heavily amplified; it’s like the volume in our brains in constantly set to 11.  Every now and then this proves useful, like when I could smell the very faint gas leak at my neighbor’s house that no one else could.  Usually it just means there are more things to avoid which would trigger pain and migraines.  My husband Geoff and I joke that I can smell things only dogs and I can detect, but there’s a truth behind the laughter.

The Fog Rolls In - a self portrait about "brain fog"

The Fog Rolls In – a self portrait about “brain fog”

And, ah yes, pain.  Pain blends into your existence like spilled ink, no matter how you try to resist.  The areas of pain vary from patient to patient, and even from day to day for each patient.  I have a mystery flank pain with no identifiable cause for which I receive nerve-blocking injections a few times a year, including the latest round just this morning.  The recovery period from them is usually brutal, but it’s better than not being able to have it done.  If I clean the toilet too vigorously, my arm and shoulder might ache for a month.  Sometimes longer.  I am also extremely susceptible to every bug that comes around; I cannot get through a cold and flu season unscathed.

There is currently no cure for ME, nor many good ways to even manage the symptoms.  Nor is there a clear idea of what the cause is.  There are good arguments to be made for it having a neurological cause, or it could be an auto-immune disease, something viral, something bacterial, something sent by the gods to people who were very naughty as children in previous lives… it’s all up for debate.

Unjust - model, Aly Darling

Unjust – model: Aly Darling

Back to my image, The Blue Ribbon. It’s the latest in my photographic series called Enchanted Sleep, which visually portrays what living with ME is like.

Most illnesses and many causes have their own color ribbons these days; pink for breast cancer, fibro is purple, red for AIDS, etc.  (And yes, certain colors are shared by numerous diseases and causes; purple is also used for lupus and Alzheimer’s along with quite a few others.)  ME’s ribbon is blue.  I photographed this image several months ago during an underwater shoot with Katie.  It took me longer to get to editing it than I had planned, and by the time it was done, it was so close to May 12th, I decided to just wait to release it now.

Katie is my honorary ME-er; she’s quite the opposite of someone with ME, being full of energy and vitality all the time.  But she’s been around me and other friends who do have similar illnesses that she seems to understand our struggle as much as anyone could.  I have great trust in her modeling instincts, so when we shot this, I gave her a long strip of blue ribbon and just told her to do something with it.  What she came up with so clearly encapsulated the physical fight you’re forced to be in every day, I knew it was the perfect visual metaphor.  Thank you, Katie, for taking on our cause and helping me portray it in my images!!

The Blue Ribbon - detail

The Blue Ribbon – detail

To do my part, 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

Also, in honor of this day of raising awareness, I’m holding a contest to win a beautiful, 10″ x 15″, museum-quality print of my latest image, The Blue Ribbon; an underwater representation of the struggle that living with ME can be.  Your print will come on beautiful, shimmering, pearlized, archival paper.  And all you have to do is tweet!

The Blue Ribbon

The Blue Ribbon, model: Katie Johnson – enter the giveaway to win a print of this image!

Ready to tweet?  Use any of the following!

Curing baldness gets 4x more funding than ME/CFS, but no one ever died of baldness    

*****

ME/CFS knows no social or economic boundaries; it affects all equally w/out mercy.    
*****
ME/CFS in not in our heads & cannot be cured with exercise & a better attitude.    
*****
ME/CFS is not a “female” disease; 20% of sufferers are male.    
*****
ME/CFS isn’t just about being “tired,” it ravages every single part of the body.    
*****

ME/CFS can be just as deadly as MS, HIV and AIDS, yet it is largely ignored.    

*****

More exercise and a better attitude will not cure ME/CFS.    

*****

We’re not chronically fatigued, @CDCgov. We have myalgic encephalomyelitis.    

Tweeting multiple statements will count as extra entries, so enter as many times as you like.  However, tweeting the same statement multiple times will not count.  And that will probably just annoy the people reading your feed, so don’t do it. 😉  I will choose a random winner from all entries on May 20th and announce the winner here!

Catch up on the story with the first and second posts this week about ME, and keep an eye out tomorrow for more about this glass mountain!

Thank you to everyone for reading and participating!  If you have had your own experiences with ME, CFS, fibro or any other chronic illness and you’d like to share your story, please leave it in a comment!

Read Full Post »

***Want to win a free print of my latest image, The Blue Ribbon?  Read on to find out how you can enter!!***

Yesterday’s release of The Blue Ribbon has special meaning for me since it marks the 30th anniversary of the Incline Village outbreak in 1984.  Never heard of the Incline Village outbreak?  I hadn’t either, not until I’d been sick with ME for several years.

That ME outbreak gave birth to a medical schism between the United States and the rest of the world.  It enabled American health insurers to coin the demeaning name “Chronic Fatigue Syndrome” so they could distance themselves from covering ME patients…or even recognizing they are ill.  The most well-written, comprehensive and succinct explanation of the outbreak and its consequences comes from an excellent article written by Erica Verrillo, which I will share with you here [emphasis mine]:

Martyrs To A Name - models myself and Aly Darling

Martyrs To A Name – models myself and Aly Darling

*****

Nobody is willing to wrap their tongue around anything that requires 11 syllables. But that is not why Steven Straus at the NIH decided to “rebrand” myalgic encephalomyelitis (ME) as “chronic fatigue syndrome” in 1987. He wasn’t verbally lazy. He was nefarious.

…To understand why the department of Health and Human Services (HHS) decided to bury this illness with a silly name, we have to go back to 1934, to the Los Angeles County Hospital. In that year, a polio epidemic was raging through California, claiming hundreds of lives. In 1934, 198 staff members at the LA County Hospital were struck. But they did not develop paralysis, nor did they die. They suffered from a range of symptoms that included weakness, easy fatigability, exercise intolerance, and photophobia, all of which suggested a neurological disease – like polio. But their symptoms did not resolve over time.

It was not polio. The physician who reported this mysterious epidemic, Dr. Alexander Gilliam, called it “atypical polio.” Eventually, two of the doctors who had fallen ill sued. They each won two million dollars – an enormous amount of money in those days.

As the epidemic of “atypical polio” spread around the Northern Hemisphere, increasing numbers of people were struck. In 1955, there was an epidemic in Royal Free Hospital in London. Like the LA epidemic, there was a high attack rate among hospital personnel. The investigating physician, Dr. Melvin Ramsay, called it “myalgic encephalomyelitis,” meaning pain accompanied by inflammation in the brain and spinal column. He noted that the symptoms of ME exactly replicated those of the LA County Hospital outbreak.

Since then, there have been over 60 outbreaks of ME, but the one that drew media attention in the US was the Incline Village outbreak in 1984. Two doctors, Dr. Dan Peterson and Dr. Paul Cheney, began seeing patients with a peculiar illness. The illness caused easy fatigability, weakness, pain, sleep disorder, and a spate of neurological symptoms. It got worse with exercise. Over that summer, hundreds of people were struck. The doctors were sure that it was an epidemic, and that it was caused by a pathogen affecting the central nervous system. They called the CDC.

The CDC showed up eventually, but they refused to examine any of the patients. Steven Straus called it a disease of “depressed menopausal women.” HHS made this characterization known to the press, which then dubbed the disease “yuppie flu.”

Once it was sufficiently discredited, “CFS” could be safely shoved under the rug for three decades.

Since the 1984 Incline Village outbreak, over one million people in the US have contracted the disease. Between 17 and 20 million people have ME worldwide. The economic losses are staggering – $17-23 billion dollars annually in the US alone.

But over most of the past 30 years NIH has spent nothing on research for the disease. This year it reserved $5 million, or less than $5 per person. In contrast, the NIH is spending more than $2.7 billion on AIDS, which has a comparable prevalence.

This paucity of expenditure has slowed serious scientific research. In addition, because there is no money for research, researchers and clinicians at academic institutions are discouraged from studying the disease. Doctors in major hospitals are told not to treat it, because insurance companies won’t pay for an illness that has “no cause and no cure.” And peer-reviewed journals will not publish research papers on the illness.

In short, the illness has been blacklisted. And the reason is not simply because HHS is incompetent, or because it feared yet another AIDS-like epidemic – although those things influenced its decision to do nothing. The reason HHS has spent thirty years in denial stems from those two doctors who received $4 million after the 1934 LA County outbreak. From that point on, this illness has been on the radar of insurance companies.

It would be a mistake to think that HHS operates without input from the insurance industry. And it would be a mistake to believe that the insurance industry – which has spent 30 years refusing to cover patients with the illness, and has hired physicians to dismiss the disease as “all in your head” – is not panicked by Obamacare. With over a million sick with ME, and a quarter of those unable to get out of bed, they stand to lose billions.

*****

Breakable - a self portrait

Breakable – a self portrait

Yes, a bureaucratic trick of the insurance industry changed our name and helped keep the world ignorant to our illness.  This makes me so angry I could cry.  The sheer cruelty of it is astonishing, even for insurance companies.  Intentionally denying care, intentionally denying the existence of the disease at all; it’s unforgivable.  But we sick will NOT be forgotten.

The vast majority of the world has never even heard of ME, let alone experienced it, on their own or through others.  That ignorance is absolutely deadly to us all.  If the public does not demand, loudly, persistently, that change MUST happen, it never will.  And that cannot be allowed.  The stakes are far too high.

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

Also, in honor of this day of raising awareness, I’m holding a contest to win a beautiful, 10″ x 15″, museum-quality print of my latest image, The Blue Ribbon; an underwater representation of the struggle that living with ME can be.  Your print will come on beautiful, shimmering, pearlized, archival paper.  And all you have to do is tweet!

The Blue Ribbon

The Blue Ribbon, model: Katie Johnson – enter the giveaway to win a print of this image!

Ready to tweet?  Use any of the following!

Curing baldness gets 4x more funding than ME/CFS, but no one ever died of baldness    

*****

ME/CFS knows no social or economic boundaries; it affects all equally w/out mercy.    
*****
ME/CFS in not in our heads & cannot be cured with exercise & a better attitude.    
*****
ME/CFS is not a “female” disease; 20% of sufferers are male.    
*****
ME/CFS isn’t just about being “tired,” it ravages every single part of the body.    
*****

ME/CFS can be just as deadly as MS, HIV and AIDS, yet it is largely ignored.    

*****

More exercise and a better attitude will not cure ME/CFS.    

*****

We’re not chronically fatigued, @CDCgov. We have myalgic encephalomyelitis.    

Tweeting multiple statements will count as extra entries, so enter as many times as you like.  However, tweeting the same statement multiple times will not count.  And that will probably just annoy the people reading your feed, so don’t do it. 😉  I will choose a random winner from all entries on May 20th and announce the winner here!

Keep watch for tomorrow’s post about my own personal history with ME, and catch up with yesterday’s blog if you haven’t seen it yet!

Thank you to everyone for reading and participating!  If you have had your own experiences with ME, CFS, fibro or any other chronic illness and you’d like to share your story, please leave it in a comment!

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“I assess the power of a will by how much resistance, pain, torture it endures and knows how to turn to its advantage.” – Friedrich Nietzsche

 

Vanity's Murder

Vanity’s Murder, a self portrait

 

May 12th is called “Invisible Illness Day.”

You probably don’t know that…and that’s part of the problem.

Years ago, May 12th was chosen to be the international awareness day for chronic immunological and neurological diseases, which include everything from Gulf War Syndrome and Multiple Chemical Sensitivities to fibromyalgia (fibro), Chronic Fatigue Syndrome (CFS) and myalgic encephalomyelitis (ME).  Yet more money is spent each year trying to cure male pattern baldness than these diseases.

I’m all for a luxurious head of hair.  But, diseases like ME are taking lives.

A Fading Girl - model: Brooke Shaden.

A Fading Girl – model: Brooke Shaden

To be sure, “Invisible Illness Day” rolls off the tongue much more easily than “Myalgic Encephalomyelitis Day.”  But the name highlights one of the sources of great frustration for most of us — we often do not APPEAR outwardly sick, thus many people refuse to believe our illness is real.

Unfortunately, some of those “many people” include doctors, policy makers and insurance companies.

How do we fight an illness with no end, no cure, no treatment, no recognition?  How many people must die before the world pays attention?  How many sufferers must commit suicide from the hopelessness and misery they’re dragged through every day before change comes?  We fight it by bringing awareness of the problem, one person at a time.  Every tweet, Facebook post, blog entry, text and conversation you and I have about ME helps fight it.  Every petition we sign, documentary we watch and donation we give is a punch in ME’s face.  And here’s the latest way I’m balling up my tiny little fists.

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

Also, in honor of this day of raising awareness, I’m holding a contest to win a beautiful, 10″ x 15″, museum-quality print of my latest image, The Blue Ribbon; an underwater representation of the struggle that living with ME can be.  Your print will come on beautiful, shimmering, pearlized, archival paper.  And all you have to do is tweet!

The Blue Ribbon

The Blue Ribbon, model: Katie Johnson – enter the giveaway to win a print of this image!

Ready to tweet?  Use any of the following!

Curing baldness gets 4x more funding than ME/CFS, but no one ever died of baldness    

*****

ME/CFS knows no social or economic boundaries; it affects all equally w/out mercy.    
*****
ME/CFS in not in our heads & cannot be cured with exercise & a better attitude.    
*****
ME/CFS is not a “female” disease; 20% of sufferers are male.    
*****
ME/CFS isn’t just about being “tired,” it ravages every single part of the body.    
*****

ME/CFS can be just as deadly as MS, HIV and AIDS, yet it is largely ignored.    

*****

More exercise and a better attitude will not cure ME/CFS.    

*****

We’re not chronically fatigued, @CDCgov. We have myalgic encephalomyelitis.    

The Blue Ribbon - detail

The Blue Ribbon – detail

Tweeting multiple statements will count as extra entries, so enter as many times as you like.  However, tweeting the same statement multiple times will not count.  And that will probably just annoy the people reading your feed, so don’t do it. 😉  I will choose a random winner from all entries on May 20th and announce the winner here!

Thank you to everyone for reading and participating!

Curious how ME became an invisible disease?  Stay tuned to find out more for Invisible Illness Week!

If you have had your own experiences with ME, CFS, fibro or any other chronic illness and you’d like to share your story, please leave it in a comment!

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Poor, patient Katie shot this same concept with me three times, spanning almost a solid year from the first take to the last one.  I assured her each time we reshot it that the problem was not her, because it honestly wasn’t.  This was a case of me having a very clear vision in my head of how the image should look, but not taking the time to inspect it closely enough.  Each of the other two tries at this shoot came close, but there was always something just enough wrong with it that I knew I needed to reshoot it to be truly happy with the final images.

Flora Awakens

Flora Awakens

Here they finally are!  Flora is a DreamWorld character I’ve had in my head for a long time; an obvious statement given how many times I’ve tried to capture her visually, but much longer considering all the time I spent conceptualizing her and building her elaborate costume.

Flora was a nature spirit to me, the bringer of spring, renewal and life.  I strongly pictured that wherever she walked, flowers would grow in her footsteps.  I thought this was quite original until I remembered…

When I was young, I watched (over and over and over) an animated version of The Lion, The Witch And The Wardrobe, which remains my favorite film version of the novel to this day (it’s the only version which, in my opinion, gives Aslan a truly “golden” voice as CS Lewis describes it, for one thing).  In this take on the story, when Aslan is resurrected and romps with Lucy and Susan, flowers spring up wherever he steps, leaving a trail of paw-shaped floral clusters.

Ok, so the idea wasn’t exactly mine.  But at least I realized where I’d gotten the idea before I started calling it completely my own!

I started with a beautifully embroidered corset top at a local second-hand store.  I spent a while deciding if I would keep it as part of my personal wardrobe or use it for this costume, and the costume obviously won.  I decided I had enough pretty things that I don’t wear often enough as is, and it really added a lovely depth to the costume with its subtle ornateness.  The other base piece of clothing was a lovely, fluffy aqua-colored skirt made from layers of the lightest, softest netting.  This was another thing I had to seriously debate weather to sacrifice to the costume gods, but in the end, I decided I could always buy another one for myself.

bts10

 

Over the aqua skirt, I added an airy overskirt of ivory tulle, lifting it in two spots at the front with a small spray of flowers to hold it in place.  I added a layer of tulle around the top of the bodice as well to give flowers more to hold on to and also give it a dropped shoulder.

Creating is usually a messy process.

Creating is usually a messy process.

Next step, as it so often is, was to cover it with flowers!  My handy hot glue gun proved its worth again.  I tried to pick flowers which enhanced the shape I was creating in the clothing.  The wisteria dripping down from the shoulders seemed so perfect to me!

bts7

Once I had the front looking pretty much like how I’d pictured it, I started working on the most exciting part; the train!

bts6

This dress’ train started at the top of the back and went all the way down to the bottom of the skirt; a very old-fashioned and somewhat unusual style of train.  Since I knew I was going to have use my flowers carefully and wisely to make them cover everything I wanted them to, I hemmed and hawed over this part a lot; pinning flowers in place, moving them around, flipping this one and that one… Eventually I just had to start gluing flowers in place and trust that I would figure it out as I went.

The finished train!

The almost-finished train!

 

After I was satisfied with the dress, I started working on the flower footprints.

Fabric feet

Fabric feet

I traced the shape of my feet onto paper and then cut four pairs of feet out of some nice dark green material I had leftover from another project.  Again, the next step was to cover with flowers!

bts3

This gave me a total of eight feet.  I would have liked to have done a few more, but I was running out of flowers, so I had to make due.

bts2

Beware of hot glue drippings.  I still have a faint scar from where this guy landed a year ago.

Beware of hot glue drippings. I still have a faint scar from where this guy landed a year ago.

Apparently I didn’t take any making-of photos of the flower pieces for Katie’s face, hair and hands, which is too bad.  For the pieces in her hair, on her eyebrows and ears, I cut rough shapes from a thin sheet of plastic; I knew the glue would melt the plastic where it came in direct contact, but it would provide just enough of a frame to make my life easier.  They were very free-form creations, which I put together on my foam head to make sure the proportions were at least somewhat reasonable.  I had planned on cutting them slightly to fit Katie’s face when the shooting day came, but they ended up fitting her beautifully!  The pieces in her hair were held on with bobby pins and the ones of her face stayed on with a little help from garment tape.

bts cute

Katie being adorable and showing off her new prosthetics.

Her “hand flowers,” as I was calling them, were meant to show life just springing off her, literally dripping from her fingers.  These were only constructed the day before the third shoot, and I loved what they added to the images, so perhaps it’s lucky that the first two takes didn’t turn out 🙂  These were very, very easy to make.  I tied a loop of clear, stretchy cord to slide over Katie’s palms.  From each of these loops I tied three lengths of monofilament thread and randomly glued little petals and blossoms to them so it looked like they were falling.

bts hand flowers

At this point Katie and I shot the concept… then we reshot it… and then we finally shot it for a third time, which was the one that stuck.  It goes to show, if something doesn’t go right the first time, just try and use it as a learning experience!  With Katie, we always have a fun time, no matter what we shoot, so when concepts aren’t perfect right away, I haven’t wasted anything.  I had a good time with my friend, and I hopefully learned something about how I don’t want my final image to look!

With that said, allow me to show you the finished trio of images, with detail shots beneath each of them!

Spring's Awakening - detail

Spring’s Awakening – detail

Spring's Awakening - detail

Spring’s Awakening – detail

Spring's Awakening - detail

Spring’s Awakening – detail

Spring's Awakening - detail

Spring’s Awakening – detail

 

Spring's Awakening - detail

Spring’s Awakening – detail

Spring's Awakening - detail

Spring’s Awakening – detail

 

Joy Of Renewal

Joy Of Renewal

Joy Of Renewal - detail

Joy Of Renewal – detail

Joy Of Renewal - detail

Joy Of Renewal – detail

 

Life Eternal

Life Eternal

Life Eternal - detail

Life Eternal – detail

Life Eternal - detail

Life Eternal – detail

 

And here’s a few more detail shots to cover all my bases!

Flora shoot details

Flora shoot details

Flora shoot details

Flora shoot details

Flora shoot details

Flora shoot details

Flora shoot details

Flora shoot details

Flora Shoot detail

Flora Shoot detail

 

If you have a favorite of the three, I’d love to hear your opinion!

 

Lastly, before I go, I’d like to mention the lovely interview I did with the well-respected photography site PhotoFocus!  I was very honored to be their Photographer Of The Week 🙂

Read the interview HERE!

PhotoFocus

Thank you, PhotoFocus!!  And thank you to all my readers and supporters!  And an extra big, special thank you to Katie Johnson for being so patient and willing to keep redoing this one concept with me and knocking it out of the park every time!

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***WARNING: this post will contain spoilers for this season of True Detective.  Turn back now, ye who have not seen it.***

There.  With the formalities out of the way, we can settle in and chat 🙂

I don’t believe I have ever witnessed such a frenzied, overwhelming reaction to a television show in such a short amount of time.  True Detective was only eight episodes long.  I knew, for myself, that I was going to be completely obsessed with it by the second episode; I warned Geoff about it and that I was going to have to buy it on DVD the very moment it came out.  You all probably know by now how I tend to obsess over things.

For anyone unfamiliar with True Detective, it is an eight-episode series which recently ran on HBO.  It tells the story of Woody Harrelson and Matthew McConaughey, two detectives who are partnered together to solve a serial killer murder mystery.  The show jumps around from 1995, when they believe they solved the crime, and 2012, when it rapidly becomes obvious that something is amiss; the killer was not apprehended after all.

What impressed me so much was how strongly the entire internet reacted to the show.  Within those same short, first few weeks the internet exploded with True Detective interest, and by the finale, the fervor was so high that fans streaming the episode through HBO GO crashed the network’s servers.  This is the kind of rabid loyalty that usually takes years to build up, like with Breaking Bad, for example.  Both shows completely deserved the devotion given to them, but it intrigues me that True Detective was able to accomplish this in a mere eight weeks.  What is so different about this show?

Like the very best art, it’s extremely difficult to parse out exactly what makes it so special.  True Detective was pure magic, and I don’t believe it’s something that can be distilled down to a formula and repeated endlessly.  But I’m still going to take a stab at defining what I think people, including myself, are responding to so strongly.

1.  Relateable, real, unique characters.  Marty Hart and Rust Cohle, played by Woody Harrelson and Matthew McConaughey respectively, are fascinating.  They are fully realized, flawed, broken men but they still try to do good and make a difference in the world.  Whether you’re more of a Hart or a Cohle (guess which one I am – HAH), you’ll find someone to identify with.

These men both deserve Emmys and any and all awards given out to television performances for their acting.  To be honest, I’d never really gotten Matthew McConnaughey before.  True Detective completely changed my opinion of him; I was absolutely blown away.  Woody Harrelson is, of course, spectacular as well, but I went in expecting to enjoy his work.  McConnaughey’s jaw-dropping performance in scene after scene was a revelation to me.

2.  A script which treats its audience with respect.  You will not be talked down to here.  There is no spoon-feeding of the audience.  You are expected to pay attention and remember clues dropped in one episode and discovered in another.  Nothing has been dumbed-down and it’s incredibly refreshing.  I want my shows to challenge me, to engage me, to literally take me on a journey.  True Detective does all that and more.

3.  Myth and metaphor.  If you’ve seen any of the series, you’ve probably already read about how much of it was inspired by Robert W. Chambers’ 1895 classic work The King In YellowThe King In Yellow is a collection of short stories about a fictional play within the stories by the same name.  The first act of the made-up play is safe but it lures you into reading the second act.  Anyone who reads even a few words of the second act is shown such horrific truths about the universe that they’re driven insane.  Carcosa, The Yellow King, masks (both literal and metaphoric, masking who you truly are), black stars, the sign of the Yellow King, truth about the world bringing on madness, it all stems from The King In Yellow.  This is the kind of thing that really excites me.  And yes, I did read the entire King In Yellow between episodes just enhance my viewing pleasure.  This is the kind of loyalty the show inspires.  While it is certainly possible to watch the show and enjoy it without having delved into hundred-year-old, obscure literature, you want to for True Detective.

I have always been a proponent of the power of myth and metaphor.  Its something that I try to use as often as possible in my own work.  They are an incredibly strong force, which is rarely drawn on in television; certainly not to this degree.

Take the detectives’ names.  Marty (Martin) Hart and Rust (Rustin) Cohle.  Marty; the warm, personable, passionate, fiery, family-man-with-something-on-the-side.  Martin is derived from Mars, Roman god of war and means “warring.”  “Warring,” whether against the killer he hunts or the banalities of daily life, and “heart” are two perfect words to sum Marty up.   “Rust” and “coal” are perfect expressions of Rustin Cohle; bleak, nihilistic and emotionless.  Rust only occurs on metal, an element which is the perfect metaphor for Rust, cold and strong, but wounded, and we watch him disintegrate a little bit at a time.  Coal… I can think of nothing better to describe Rust’s heart after his young daughter’s death, which sent him down this path of meaninglessness and hopelessness.  But like real coal, there is the potential to change into something utterly different and glitteringly beautiful.

The more you pay attention to the show, the more subtleties you pick up on.  Pay attention to how the color yellow is used, for example.  Scenes that have the most to do with the killer are the most yellow.  When Rust makes Marty view the VHS tape of Marie Fontenot’s murder, not only is the whole screen is saturated in yellow, it’s a clear metaphor for Marty having read the “second act.”  And after you’ve read the second act, there is no going back.  Things can never be the same.

Myth and metaphor are so cleverly and generously used, I could go on for pages about it, but you get the idea.  I think you’ll have more fun if you watch the show and try to pick out the references yourself 🙂

4.  A beautifully shot piece of art.  Not to mention interestingly shot.  Incredibly complicated, gun-fighting, fist-fighting, dozens-of-extras, police-cars-and-helicopters, lifting-the-camera-man-over-a-fence-with-a-crane, six-minute-without-a-cut scene, anyone?

I also love how the show uses classic noir and literature traits, like showing peoples’ reactions to horror instead of the horror itself.  It’s an underused and extremely effective method of story-telling, not to mention underscores the mysterious tone of the entire show.

5. Healing and redemption – and the twist-within-a-twist ending.  You expect, this being a show about two detectives solving a crime, even though by now you know you’ll see something more than that, that the show will end on a climax of Marty and Rust catching the killer.  And they do catch their killer…  who ends up being at once creepier and more ordinary than you had expected the grand Yellow King to be, which feels like a very authentic picture of actual murderers.  Twist one.  Marty and Rust catch their Yellow King about halfway through the last episode, giving them almost another 30 minutes to fill.  Why would they need the extra time, you wonder.  To finish the story.  To really finish the real story.

What’s the real story?  As Rust says, it’s the oldest story, of light verses darkness.  Not just in the grander sense of of Marty and Rust catching their man, but of them facing the darknesses within their own lives.  For Marty, this means seeing the family he destroyed years ago with his multiple affairs.  And while things are far from all forgiven and forgotten, the show makes it clear that the fact that his ex-wife and daughters are even in the same room with him is a huge hurdle to have crossed.  Marty is not ok.  His family is not ok.  But now, finally, things can begin to heal and just maybe, they will be ok some day.

And then there’s Rust.  Rust, who began to withdraw from the world years and years ago when his young daughter was suddenly killed.  Rust, who wants to hurry up and catch their man because his entire life has been “a circle of violence and degradation as long as I can remember” and he wants to end it as soon as his work is done.  You can’t blame him for feeling that way.  I think he expected he would die in the final confrontation with the killer, which very nearly did happen, but he finds himself alive still at the other end, after awakening from the coma his wounds put him in.  What’s left for our nihilistic, philosophical, misanthropic hero?

A lot, it turns out.  Our emotionless, cerebral, steely man, who I can remember smiling only once during the whole series, breaks down sobbing.  In his coma, he had a vision of the afterlife where he encountered his father’s and daughter’s spirits, and moreover, he encountered their love.  Love which continued beyond death.  Which wiped away any disappointments his father may have had for him in life, any guilt he may have felt over his daughter’s death.  He was wrapped in pure love, something he had never experienced before.

It profoundly effected him.  When Marty, looking up at the night sky observes that the dark seems to have a lot more territory, Rust responds with “Yeah, you’re right about that… But you’re looking at it wrong… Once, there was only dark.  If you ask me, the light’s winning.”

Twist two.  The entire show wasn’t about them catching the Yellow King.  The entire thing led up to this moment, when Marty and Rust are reconciled, the healing has begun, and Rust has his first moment of optimism.  Healing and redemption.  Light verses dark.  That’s what we’d been watching this whole time.

 

So how does my self portrait tie in?  In a lot of ways actually.  Most obviously, it’s a reference to the starry night Marty and Rust philosophize under, the hope and beauty they were able to find.  The yellow is obvious as well, and since purple is yellow’s complimentary color, that seemed like a good direction to go in.  What’s hard to see in the shrunken, internet-appropriate version of the image is how the yellow fabric is sliding off my face; the mask is coming off.  And most importantly,  I wanted to portray the optimism Rust found there at the very end.  Maybe life isn’t all shit and misery.  Maybe it’s full of beauty and wonder too.  I’ll do my part to try and make that second part more and more true.

The Light Is Winning

The Light Is Winning

 

The Light Is Winning

The Light Is Winning – detail

The Light Is Winning

The Light Is Winning – detail

The Light Is Winning

The Light Is Winning – detail

The Light Is Winning - detail

The Light Is Winning – detail

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Blackfish.  The documentary about captive whales that will break your heart and move you to action.

By now, you all have probably read my open letter to Jack Hanna.  You probably saw Concrete Cell, the first of a short series of underwater photos inspired by the film.  As I do, I turned to art to help me express my thoughts.  I’ve just completed the last two photos for the series, and I’d like to share them with you here.

I set up an underwater shoot with Katie, with the intention to create something inspired by Blackfish.  Something sad and cold, that touched on the tragedy of the film.  Something that would help me work through the troubling emotions the movie had brought up, and lessen my feeling of helplessness about the plight of the whales.

It was a great shoot.  We captured everything we wanted, my camera behaved itself, and even the sudden appearance of gardeners tending to the yard around the pool was just another story to laugh about.  As she often does, Katie seemed to instantly understand what it was I wanted to express and needed very little direction.  My new wetsuit worked wonders and even though I still hated being wet at all, at least this time I wasn’t a purple, shaking mess by the time the shoot was done.

Editing the photos was another matter.  Having to visit such an emotionally dark place whenever I worked on them was not easy.  I had to take breaks and work on lighter photos.  But I’m proud of myself for sticking it out; doing what I felt I needed to do despite the difficulty of it.

In the first photo, we wanted to recreate Tilikum’s misery in this iconic photo of him, taken by Colleen Gorman, languishing alone in his solitary confinement.

Photo by Colleen Gorman; click on the photo to be taken to her excellent article on her blog The Orca Project detailing his miserable existence.

The second photo is an impression of the anguish of all the captive dolphins and whales and a memorial to all their deaths.

As this year draws to an end, I can’t help but think of what a huge impact Blackfish has already had on society.  It was only shown on CNN in October of this year.  The backlash against SeaWorld and its supporters has been immense.  Sponsors have fled, popular bands have refused to perform there.  Petitions of every kind are circulating, making demands.  Change is coming.  But it cannot come fast enough.

It’s easy to feel helpless to bring big change about.  We are all only one person after all; one drop amidst a great ocean of people.  But, as they say in Cloud Atlas, what is an ocean but a multitude of drops?

I want my drop to fall on the side of animal rights.  And I hope that 2014 brings about the ocean of change that has already begun.  I believe it can happen 🙂

Lifeless Life

Lifeless Life

A Drop Of Blood

A Drop Of Blood

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I want to give you all a few quick updates here on the blog.  First though, I’d like to introduce my first Blackfish-inspired photo today, titled “Concrete Cell.”  It is the first in a series, but I was too excited to share this photo to wait until they’re all finished.
The often-cited comparison of SeaWorld’s whale enclosures being the equivalent size of a bathtub to you or me not only deeply saddened me, but also sparked the idea for this photo.  Imagine it.  When you’re not forced to perform, you live in this sad, colorless, sterile world of concrete and shadows.  The intelligence of these whales makes their living conditions even crueler and more heartless; sentient beings shoved into tiny compartments where they die a little more every day.
If you also agree that SeaWorld’s practices are abusive and need to be changed, please see my open letter to Jack Hanna regarding his defense of SeaWorld.  You can read more about the issues there and take action with petitions to sign!Thank you to Katie Johnson for her beautiful underwater modeling in this!  Underwater modeling is a skill unto itself and quite tricky, but she makes it look effortless.
Concrete Cell

Concrete Cell

Secondly, there has been a lot of response to my post about suicide and Chronic Fatigue Syndrome/myalgic encephalomyelitis.  This is one of those topics that is very, very real, but rarely discussed in public.  Or even in private, for that matter.  There is always a correlation between any kind of chronic illness and suicide, because there is only so much a person can endure.  This post has been shared quite a bit already, but I would love for it to reach even more people, and hopefully find its way to the original person who found my blog by searching “I have Chronic Fatigue Syndrome and I want to give up.”  I understand that feeling.  My blog will rage in its way against cruelties, abuses and atrocities, but its arms are always open to the ill, the hopeless, the voiceless and those in need.  This is not a place of judgement.  This is a place of love and acceptance.

Lastly, my 2014 calendars are now available!  Printed on thick, gorgeous paper, each month features a popular new image from my most recent works, including photographs from my DreamWorld, actor portraits series and my CFS/fibro/ME series Enchanted Sleep.  So add a dose of magic to your day…or the day of someone you love…with a collectable calendar!

2014 Calendar

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