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Posts Tagged ‘metaphor’

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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Rapeseed's Harvest

This was one of those self portraits that I just HAD to shoot RIGHT THEN or I was going to explode.  It’s actually been a pretty rough couple of months; I’m fighting my way out of another bout of depression that came on for seemingly no reason.  This does happen periodically, so I tried to just give it time and let it pass, it always will eventually… but it’s been clinging like it hasn’t in a long, long time.

As depression progresses, it gets worse, not just additionally, but exponentially.  You can very quickly move from, “Ok, I don’t like this, but I’ll get through it soon,” to “Oh my god, this is going to be the rest of my life, I will never feel joy again ever; what’s even the point of living??” in shockingly short time.

For me, one of the best tools I have against depression and slowly losing my will to live is creating art, especially art that expresses how I’m feeling at the time.  It’s incredibly cathartic.  Working on this self portrait has been a huge help in keeping me sane lately, but the pessimistic side of me wonders if I’ll just be left right where I was before I started it, once I’m totally finished creating it.  I suppose that even if it does, I’ll at least still have a new image in my roster.  It hasn’t helped my depression to know that it’s been so long since I released any new images (there are far too many reasons to get into right now, but it’s been incredibly difficult to find and make time for art lately).

I was thinking about what I would say to accompany this image, which (probably obviously, belongs to both my DreamWorld and Eternal Storms series) and pondering how to explain what long-term clinical depression feels like to those who haven’t experienced it.  It’s not the same as just being sad or upset, it’s a stain on your soul which you can’t ever blot out.  Out, out, damn spot.  A stain which not only looks ugly, but spreads like a cancer and does you actual harm, emotionally, physically and mentally.

Depression, especially when it gets really bad, feels like your brain is beating and gang-raping your soul every day while the rest of the world goes about their business, either not noticing, or at best stopping to take cell phone videos of your torment, but offering no help.  And much like the unjustified stigma and shame victims of abuse feel, people who have trouble with depression and who don’t feel excited about being alive are often subject to the same kinds of judgements.  We must enjoy wallowing in our own emotional filth, or else we’d just get up, dust ourselves off and go be happy, right?  Or, ok, maybe it’s really a chemical imbalance thing; so just take an anti-depressant and let’s all get on with our lives, all right?  And she was wearing a short skirt, so she was asking for it.

I wish it worked like that; I wish it was that easy.  I can’t recall how many medications I’ve tried, not to mention the far, far greater number of alternative healing treatments, supplements, and anything else I could think of.  Some help more than others, but so far nothing has completely cured me.

For anyone wondering, no, I do not believe this bout of depression is really related to the ME.  The ME has been about the same as it has been since my injections kicked in, so there haven’t been any recent changes on that front.  It definitely doesn’t help anything, but I don’t believe it’s the cause.

Depression lays a gray film over your life.  Everything appears bleak and hopeless.  There’s no point to trying, no point to doing anything.  And there’s also the honest, nothing-to-do-with-depression frustration of having to be your own guinea pig as you try different treatments, often with horrible, horrible side effects, which may or may not stop after you discontinue the medication.  It’s been recommended that I add a psychiatrist to my team of doctors (I have a wonderful therapist, but she’s a psychologist, so she can’t prescribe medication) which I’m not looking forward to.  My depressive mind doesn’t want to go through the bother of more appointments, more co-pays, more explaining my symptoms and feeling judged, more trying new medications will probably make everything worse before it even might get better.  My rational mind says I should try it anyway, but I’m not looking forward to it.

So, back to talking about this image.  I chose the title even knowing it might ruffle some feathers, because I honestly don’t feel like there’s a better way to explain it to those who have been fortunate enough to never be so depressed that they feel they can’t go on another day.  It is your mind raping your soul, verbally abusing you, telling you you’re worthless, a horrible person, undeserving of love or bothering another person by asking them for help.  It’s a prison only you can see and feel; a prison you both hate and are afraid to leave, because it’s all you’ve known for so long.  (My first memories of what was clearly depression are from my early teens, but I wonder if the terrible anxiety and nightmares I endured since I was a very young child were a precursor to this.  The first time I gave serious thought to killing myself, I was 17.)  A strange Stockholm-like syndrome can develop where you long to escape, but are afraid to.  However, I hope it’s clear that I am in no way trying to take anything away from the trauma victims of the “regular” kind of rape suffer from.  Though our hells overlap in some ways, they are not identical.

I liked the idea of using “rapeseed” in the title, not only because it catches the ear, but because I feel it works on a metaphoric level.  Rapeseed is a plant which grows beautiful yellow flowers; it belongs to the mustard family from what I’ve read (and apparently the name has to do with the Latin word for root vegetables and nothing to with an act of violence).  Kirsty Mitchel shot part of her Wonderland series in front of a breathtaking field of rapeseed flowers.  It is also, apparently, what canola oil is made from (or at least used to be?  I’m finding mixed info), around which there is some controversy if it’s truly safe for human and animal consumption.  The word at once touches on horrible, horrible acts of violence and abuse, potential danger but still has immense beauty to offer the world.

In this image, I imagined a beautiful, unicorn-like creature, someone that would look completely pure and innocent, someone who looked like that would never have had a single bad day.  And I just poured my emotions into the shoot, letting them all out.  I’ve already said it was cathartic, but I can’t stress just how much it was.  I felt lighter that day than I did in a long time.  Even editing it was therapeutic.  Some images seem to fight you the whole way, kicking and screaming, into what you want them to be; this one felt like it was actively working with me to help me achieve my goal.  It’s one of the most gratifying feelings when art flows like that.

I have been studied makeup application a lot recently (mostly for upcoming images) and this was one of my first times being able to test just a little bit of my new knowledge out.  That was fun, although tiring.  But I’m pretty pleased with my first attempt at being a makeup artist!  I had to search high and low for some cosmetic-grade silver glitter of the right size and color to make the glitter-tears; you really wouldn’t think it would have been so difficult, but it was!  I eventually found some on either eBay or Etsy; I’ve bought some from both and now I don’t remember where this particular one came from.  I already had the silver wig, so I just grayed up my eyebrows to match it better.  I used Nyx’s Jumbo Pencil in Milk for the entire eye/cheekbone area along with a nice matte white eyeshadow from BH Cosmetics pallet, along with two shades of lavender and a darker purple in my crease and as blush.  I contoured with another Nyx product, an eyeshadow in Taupe which is perfect for my pale skin (even paler here, so I used a very light hand).  I highlighted cheekbones, lids and inner corners with Deviant Cosmetics Ghost Violet, which is just about my new favorite thing ever.  It has the most gorgeous flash of purple when the light hits it, and Deviant Cosmetics has four or five colors in their Ghost line; I recommend them all!  (If you’ve been eyeing the Kat Von D Alchemist Palette but don’t have the money, go see Deviant Cosmetics.  Their colors are brighter, more vivid, they carry one more color than comes in KVD’s pallet, and it’s WAY less expensive!  And since it’s mineral makeup, there are no weird or harmful ingredients to worry about.)

After I did my makeup and looked utterly insane in person, I set my camera up and a couple lights.  I actually really hate setting up lights, so I always try and make it as minimal as possible.  Luckily, this shot didn’t call for anything fancy, so I got away with only two.  I taped some white, mesh fabric to the inside of my front door, and it gave me a lovely, neutral whiteish backdrop that wouldn’t distract from the main subject.  I was nearly done shooting when I remembered I’d intended to wear my unicorn horn circlet from Firefly Path!  I quickly shot a few more images with it on, tipping my head at different angels and planning on adding it on to the final image in post, which I did.  (This is not the exact circlet that I have, my horn is silver and the crystals are lavender, but this seems to be the only one in her shop at the moment.)

Unicorns represent a lot of things to me, but innocence and purity are two big ones.  If a human is sad, well, that’s… sad, but normal.  If a unicorn is sad, it’s tragic.  That there could be anything their magic couldn’t overcome underscores the power of whatever is causing them pain.  To me at least, that emphasized the magnitude of the power depression can hold over you.  The working title for this image as I tinkered on it was Sad Unicorn, because that was all I could think of when I needed to save the file for the first time.  It still feels appropriate in a way.

I added the trees and birds on the background, as if perhaps the unicorn girl is longing for her forest home.  I specifically chose to add crows, both because they’re one of my favorite birds (did you know they actually make and use tools and are incredibly smart?) and because Native American legends say they escort one’s soul into the afterlife.  That felt very fitting giving the subject of the image.  She seems like she’s in an alien land, somewhere she doesn’t truly belong, which is how I’ve felt about my time on earth just about every single day since I was born.  I knew this was not my true home.  My true home is where my soul resided before it decided, for whatever insane reason, to incarnate into this life.  In a meditation, months ago now, I actually visited what I consider to be my true home and I sobbed and sobbed, because I was so glad to be back, even for a moment, and also because I knew I couldn’t stay.  That place, that timeless, unchanging Home, is where this ethereal creature belongs too.

Now that I’ve gone on for probably far too long, I’ll finally show you the image.  I felt it was very important to explain my reason for the title I gave it to give people a way in to understand it.  And for anyone concerned about me, thank you, but I’ll be ok.  I’ve been through worse.  And I didn’t even have photography back then.  I have an excellent support system, which I didn’t have nearly as much of before, including my really incredible therapist.  All that said, let’s get on to the first image I’m releasing this year!

Rapeseed's Harvest

Lastly, I don’t enjoy talking about my mental health (or lack thereof) to strangers on the internet, no matter what impression this post gave you.  I speak candidly and openly about it because we NEED to end the stigma around it.  And the only way for that to happen is for those of us who struggle with it to speak about our experiences.  A lot.  In detail.  Repeatedly.  I do think things will change eventually, but it will take a lot of voices speaking honestly, blatantly, about it.  My voice is only one drop in the ocean of voices, but to quote Cloud Atlas, what is the ocean but a multitude of drops?

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What Else Can I Say About ME?

Here we are at May 12th again.  Another Invisible Illness Day come to bring awareness to all the illnesses and diseases which are impolite enough to leave their sufferers still appearing to be well.  Of course, anyone more than casually acquainted with someone who has fibromyalgia, myalgic encephalomyelitis, chronic fatigue syndrome, complex regional pain disorder, multiple sclerosis, rheumatoid arthritis, Crohn’s disease, Lyme, lupus and many, many more illnesses can attest to how debilitating they can be.  The facade of health they leave intact feels like salt in the wound; a confusion for those untouched by their cruel hand, a silent undermining force with us at every doctor’s appointment, a declaration that we are lying or greatly exaggerating our illness.

What else can I say about ME?  About all the other forgotten, ignored diseases swept under the rug of modern medicine?  Illnesses which embarrass our doctors with their constant reminder that we remain unhealed.  Sicknesses with confusing, confounding symptoms which can morph and change like the whim of a butterfly’s flight.  Maddening maladies which suck away our vitality, our joys, our passions, our lives as completely as any vampire.

I’ve written about ME extensively as it’s been an enormous part of my life for the last eight years.  How I have not had a single day since late May of 2008 that was free of pain or its constant, overwhelming exhaustion.  How it has progressively gotten worse each year.  How the government would like to pretend we invisibly ill don’t exist.  How grotesquely underfunded our research is, giving us the same amount of money for research as hayfever gets and less than 1/4 of what male pattern baldness receives.  You have heard me spout the facts and statistics.  You’ve heard me talk about my personal story and fight with ME.  What else can I say?

I can say this: I am not beaten.  I have not given up.

I am determined to get better.  I am committing myself to be well, even if I have it about through sheer mental will.  I will not give in to ME’s gloomy, hopeless future forecast of progressively worsening every year.  I am not accepting a future of the living death that is ME.

I don’t know exactly how I will get better, but I am going to.  As a sign of my determination, I changed my blog’s tagline for the first time since I started this blog years ago.  “Art, photography, life and why I always feel like shit,” felt perfectly appropriate at the time.  “Art, photography, life and how those are really all the same thing,” is much more appropriate now.  My identity is not Sarah-who-has-ME.  I am just Sarah.

As I wrote about in my last entry, my life has been pleasantly consumed recently by my spirituality.  I have strongly felt how focusing on fighting ME has been feeding it.  So now, I will ignore it as much as possible.  I do not mean that I will forget my body’s current limits, or not honor them.  Listening to my body and what it’s able to do is vital for my current and future wellbeing.  But I’ve realized that I can live within the confines of my case of ME while still not letting it reign in every area of my life, and that feel incredibly freeing.  This is the path I will pursue.

This also does not mean that I will not advocate for ME sufferers.  I still feel very strongly that the only way we will bring about change is by demanding it.  And we can only demand it if we know that it exists in the first place.  But I can also advocate without allowing ME to rule every part of my soul.

As May 12th approached, I wanted to create a new image for my Enchanted Sleep series, which is all about living with ME.  I asked Katie Johnson, frequent model and collaborator as well as dear friend, if she would help me bring some concepts to life and she gladly agreed to help.  Through a variety of factors, I wasn’t able to shoot these images until very recently, which meant I had a very short window to edit one up and release it for Invisible Illness Day, but I got it done!  Ideally, I would be releasing the whole short series we shot, but I am content with having just one to show you and help illustrate life with ME.  With that, please let me present my latest image to you, Living With The Tombstones.

Living With The Tombstones

Living With The Tombstones – © Sarah Allegra. Model: Katie Johnson. An image to help raise awareness about ME/CFS and other “invisible illnesses.”

I probably don’t have to explain the symbolism behind shooting this image in a graveyard.  ME (and many other invisible illnesses) truly can be a living, nightmarish death.  Even if you’re not one of the unfortunate souls cursed with severe ME, where any touch, light or sound cannot be tolerated, you die every day to the dreams and hopes you had when you were healthy.  You might discover new passions to pursue within ME’s confines, but do you ever truly forget what’s been taken from you?  If you do, I am not there yet.

I took the name “invisible illness” and interpreted it quite literally, editing out any part of Katie’s body which showed outside her long, princess-like dress.  And the mirrored mask felt like the perfect touch.  When people look at us, they rarely see us; they see their projections of who we are.  Often what they see says far more about them than us.  Some will look at me and, because I can occasionally manage to put on clothes, have Geoff drive and go with him to the grocery store, refuse to believe there could be anything physically wrong with me.  They don’t see the toll that those short, simple trips take on me.  They don’t know that grocery shopping is my ENTIRE plan for that day, probably several days.  How the lights and noise and bustle inside the stores give me migraines, panic attacks and leave me in bed for the rest of the weekend.  They don’t see the weight of my illness on Geoff and my family.  How if I see friends, they always have to come to me.  I so often feel like a dead-weight wife, daughter and friend.  The times I’m overwhelmed by the ME and can’t decide between crying and being too tired to cry.  How many pills I take every day to try and make it to the next day and not be consumed by the constant pain I’m in.  They just see a fairly normal-looking girl.

I can’t blame other people for not knowing that I’m sick.  I don’t display the characteristic signals of someone who is unwell, so of course people assume I’m healthy.  But we need to get to a place where I could tell a stranger that I have ME and they might know what I’m talking about.  That if someone else said they have MS or Crohn’s or fibro, that stranger would have heard of those illnesses.  That the stranger would have at least a basic idea of our struggle and the dire need for change, for research, for treatments, cures and basic respect.

We can get there.  We will.  One May 12th at a time.

Want to do more?  I can help you with that!

I’d like to thank everyone in my life, online and off, who has supported me during these trying past eight years.  Especially Geoff, who I’d only been dating for a month when I became ill.  Lesser men would have run from what he had to face, but he’s stuck with me, no matter how bad things get.  And I’d also like to thank everyone for the extremely warm and receptive response you all had to my previous blog post.  Your kind words and love and support are greatly appreciated, now and always! ❤

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I believe I’ve mentioned before that I have a rather, uh, active dream life.  My nights are often filled with deeply archetypal storylines, heavy with symbolism and metaphor, which, I suppose, is probably part of why I’m drawn to creating images along the same lines.

Hold The Gate © Sarah Allegra - detail

Hold The Gate © Sarah Allegra – detail

Sometimes my dreams are quite silly upon waking, like the dream I had where I was aboard Star Trek’s Enterprise (the original show) and Spock and I had to beam down to an alien planet so I could find my gold bikini (ah la Leia, in Return of the Jedi) which we needed in order to defeat the attacking alien army (different aliens than the ones who lived on the planet my bikini was on) and save the world.  I don’t think I was ever clear on how my gold bikini would do this, but it made sense in the dream.

Sometimes my dreams are very serious and are clearly working through problems and fears, current or past.  I had a whopper of a dream a week or two ago which I’m going to tell you about, as it relates to my most recent image.

This dream was set in the world of The Hero And The Crown, by Robin McKinley, one of my very favorite books; one of those comfort-food books I turn to again and again, especially in times of trouble.  If you haven’t read it, go and do so.  I’ll wait.

I was Aerin, the heroine of the story.  Geoff was Tor, whom I was betrothed to.  We lived in Tor’s parent’s castle (which doesn’t make sense with the book, but never mind) and nobody in the entire kingdom liked or understood me.  My only friends were Tor and Talat, my horse, along with the rest of the castle’s horses.  They had an entire army of war horses who would fight in formation on their own, without the aid of any human riders.  I took great comfort in visiting the stables frequently to get away from the nastiness of all the people and be with creatures who loved me.

The great dragon Maur, easily as big as the castle and made of pure evil, had come back and was laying siege to the castle along with numerous other giant, pure-evil dragon friends of his.  We were hopelessly outnumbered and everyone knew there was really no chance of winning this battle, but we had to try.  The dragons could only attack us at night, but in this world it became fully dark at about 1 in the afternoon and stayed dark until the regular sunrise of 5-6 in the morning.  This meant each night was very long.

Interestingly, Tor already possessed the Hero’s Crown, which ought to have given him the ability to fight the dragons off, but it wasn’t working.  It held them off a little, just barely, but it wouldn’t survive another night.

I visited the stables after the first night, thanking the horses, some of whom had been greatly wounded or killed, for their bravery in battle.  Quite a lot of them were also pregnant and foals kept popping out every time I turned around.  We had a good talk and I felt encouraged after I left them.

I found Tor and told him that I had to travel back to my family’s castle to retrieve two magic rings.  If we both wore them, then we would be strong enough to vanquish the dragons.  The thing was, I could only tell Tor where I was going and why.  I had to keep it a secret from absolutely everyone else.  At the end of the dream, I was riding off on Talat to my castle to get the rings, knowing that everyone hated me because they thought I’d just deserted them when they were most in need.  Dusk was falling as Talat and I galloped along and I knew I had to really hurry to get the rings and return to Tor’s castle in time to help everyone survive.

A couple things I should point out right away; Tor’s family in the dream is NOTHING like Geoff’s actual family.  His family embodies that friendly, easy-going, pull-up-a-chair sort of Midwestern charm you always hear about.  They’re truly all wonderful people, so don’t think that that part of the dream had any resemblance to reality!  Also, as far as I know, there aren’t any large groups of people who hate me.  I suppose I could be wrong about this, but again, the dream is not representing real life in this way.

After mulling it over a lot, talking to my mom (who is especially gifted at dream interpretation), Geoff and my therapist, I came to a few conclusions.

The dragons = ME.  Now, to be fair, I actually like dragons, but my brain often uses them as a symbol for big, bad, evil things.  (It also often uses Calantha to represent my inner child in dreams, which is just full of Freudian symbolism.)  Fighting ME every day often really does feel like you’re besieged by dragons.  You’re trapped in your castle (house/body) while an unrelenting assault of badness attacks (all of my ME symptoms; pain, fatigue, etc).

I was confused about the nights being so long until I remembered something I’d said to Geoff a few days before the dream.  I had realized that most days I spend 11-12 hours a day in bed sleeping, or at least trying to sleep.  If I can get a solid 11 regularly, I feel much better, but since my sleep is so poor, I’m often trying to make up for the bad sleep, so the time spent in bed creeps up higher.  I was startled when I realized just how much time I spent every day just trying to sleep.  I’d been getting frustrated, feeling like my days were so short and there were never enough hours… and while I know that pretty much everyone feels like there aren’t enough hours in a day, I suddenly knew why it seemed like my days really were getting much shorter.

ME also really messes up your sleep.  And if you do find yourself up at 4 am, watching TV, taking a cocktail of pills to try and get back to sleep, as I often do, nights can feel especially long and lonely.

I think that the Hero’s Crown was all the stuff I’ve tried already to feel better, all of which promise to work and cure you, but none ever has.  The rings were a hope of future treatments or cures.  Going off to get them while things were most dire represented the typical path of trying a treatment, which usually involves over-exerting yourself in some way first (going to the doctor’s office, my several-times-a-year nerve-blocking injections).

I suspect that the crowd of people who disliked and misunderstood me is my fear of people not understanding that I actually am sick, even if I don’t look like it outwardly.  This is an extremely common worry from anyone with an “invisible illness;” any sort of sickness which does not manifest in outward signs.  I often feel the need to make sure new people in my life know that I have ME and have a basic understanding of what it is so that they don’t think I’m lazy, or that I just didn’t want to go to their party, or have dinner with them.  It’s a pretty big fear, to be honest.  Almost without exception, everyone who is in my life knows what my deal is and while they invite me to things, they’re all very understanding if I can’t make it, especially if I have to cancel last minute.  I really, really hate to cancel at the last minute, but sometimes your body leaves you no other choices.  The secrecy of my mission to get the rings was mirroring the invisibility of my case of ME.

As for the more pleasant things about the dream, Geoff as Tor believed me, and he also supported me even though the entire rest of the kingdom wished he wouldn’t.  That’s 100% Geoff.  He will love and support me, in a fantasy battle with dragons, or in the real world battling insurance companies.  He is a fearless protector and someone I can always count on.  I also liked that for the magic rings to work, we both needed to wear them.  I think that speaks to the importance of having someone caring for and supporting you through this stupid disease.  I can fight it on my own, but it’s a million times better to have an ally.

And lastly, the animals will always be with me.  I have had a special kinship with animals of all kinds, since before I can remember.  My dad likes to tell the story of how there used to be a couple of huge Great Danes in a house behind ours and how they would bark and bay and snarl ferociously through the small gap in the fence if they saw you.  One day I came inside and said, “You know those big dogs out there?  They’re really friendly!”  Alarmed, my dad checked to make sure I still had all my fingers, then came outside with me where he realized that the Danes were causing a fuss because they wanted attention, not because they were aggressive.  Then for a while I collected snails in a bucket and kept them as “pets,” which I believe led my parents to get my first dog because it was just so pathetic that I was gathering snails to be my friends.  Animals have always been a big part of my life, creatures I can trust and rely on, who are as unchanging and solid as a mountain.

As I was meditating on the dream, I kept being reminded of a few big scenes from the biggest battle in last season’s Game Of Thrones.  You don’t really need a lot of context for it, just that the good guys are trying to keep the very bad guys out, and they’re horribly outnumbered and outmatched.

(Sorry, YouTube won’t let you play the videos here, but if you click the little “YouTube” button near the bottom of the video screen, it will take you directly to the videos.)

It may seem silly to those who have never experienced ME, but this is what it feels like to me.  Like you’re outnumbered 1000 to 1, the other side has mammoths and giants and all you’ve got is a fairly useless sword to try and fight them all off.  There is no end in sight, and barely any hope that you’ll succeed.  This is also the way a lot of The Hero and the Crown goes, which is part of why it’s one of my favorite books.

It may sound silly to those who have never know chronic illness’s cruel touch, but I’m willing to bet that everyone who has dealt with it will understand at once.  It’s exhausting to fight an enemy every day, who you can’t see or touch.  And even more so when some people don’t believe the enemy exists.

So, as I do, I had to take a self portrait to work through my feelings on this dream.  What could be more DreamWorldy than an image inspired by an actual dream?  I can imagine this being a snippet of DreamWorld’s rich history, perhaps during the Yellow King’s grab for the throne.  I edited it with both The Hero and the Crown and Game of Thrones in mind, lending visual inspiration.

We sick will keep fighting.  We will hold the gate.

I’ll hold the gate.

Hold The Gate © Sarah Allegra

Hold The Gate © Sarah Allegra

My lighting setup for Hold The Gate:

Hold The Gate lighting setup

Hold The Gate lighting setup

My tripod it balanced on the mattress and the camera would shift slightly whenever Calantha, also on the mattress, moved.  There was just enough room between my bed, the closet and all the other things in that part of the bedroom to make this work.  Who needs a studio??  😉

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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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“A wall of flames 40 feet high was sweeping its way up the canyon, 400 yards away. At that point, they would have had about a minute. Since they couldn’t get to the safety zone, they had to make one of their own. Andrew Ashcraft and Travis Turbyfill, the two sawyers, started attacking the brush with their chain saws, while the rest of the guys swung their Pulaskis, frantically doing what they were trained to do: move dirt, and move dirt faster.  They dumped fuel from their drip cans around the zone they’d created, then set the chain saws at the outer perimeter, so that when they exploded no one would get hurt.

[The team’s leader,] Eric, got on the radio. The Hotshots’ escape route had been cut off, he said, and they were deploying their emergency shelters.

Eric’s voice was calm – some said the calmest they’d ever heard him. At 4:47, he radioed his last transmission: ‘Deploying.’ And then, just like they’d practiced, the Granite Mountain Hotshots climbed into their shelters.

Finally, at 6:30 – an agonizing 103 minutes later – the helicopter was able to get on the ground. The onboard medic hurried to the site where they’d seen the shelters. As he approached, he spotted the metal blade from a chain saw and a pickax with the handle burned away. The ranch house was unscathed. Everything else was a smoldering moonscape.

Experts estimate that the fire burned between 3,000 and 5,000 degrees. In the end, there wasn’t much left. But what there was told a story.

The 19 Hotshots were all together. No one panicked, no one ran. Travis Turbyfill and Andrew Ashcraft, the sawyers, were at the edge of the group, closest to the flames. They were cutting lines up until the end.

When Juliann [ed – Andrew’s wife] got Andrew’s effects back, his boots and clothes were gone. His metal belt buckle didn’t make it. His pocketknife. The journals that he kept. There was a piece of Velcro from his watchband but not the watch itself. Even the metal plate and eight screws in his leg, from when he shattered it in a rappelling accident a few years back, had disappeared.

Two things, she discovered, had somehow survived the fire. One was Andrew’s wedding ring, titanium. The other, shrunken and black, was the rubber wristband that said: be better.”

–Excerpt from an excellent and comprehensive article The Last Battle of the Granite Mountain Hotshots, by Josh Eells, for Men’s Journal.

 

Singed Wings - detail

Singed Wings – detail

I initially created today’s image to be a companion piece for this photo of Katie and I, honoring the fallen firemen in Yarnell, Arizona almost a year ago.

To The Lost

To The Lost

A childhood friend of mine, Andrew Ashcraft, had been one of the lost.  As I do with most painful things, I channeled my grief into my art.

Though it always makes me cry to think about it, there is such beauty in the men’s calm acceptance of their sacrifice, their solidarity, that they were a complete, solid unit until the very end. Josh Eell’s article says it so wonderfully.  They stuck together.  In the face of immediate, certain death, they did what they could and then turned to each other for comfort.  Shoulder to shoulder, they stuck together until the horrific last.

That unity, that love, that solidarity and bravery touched me more deeply than I could, or can, express.  The only chance I had at touching on it was through art.  I set up a shoot with Katie and Bryce to portray the doomed but brave men.  It happened that some tree branches and very tall bushes in my yard had just been cut down, forming what appeared to be a huge, natural nest.  Thinking of the Hotshots as birds with broken, burned wings helped me find the metaphor I wanted to use, a way into the truth I was trying to get at.

It was an easy shoot, what with all the branches having been set up for me by the workmen.  I lit a few smoke bombs, snapped the frames and it was done.  I loved what I had gotten from this shoot as I looked at the images later.  All the same, I found I couldn’t face editing the image.  It took many, many months before I felt like I could emotionally handle editing working it up.

I didn’t consciously realize we were coming up on the anniversary of their deaths, but I must have felt it subconsciously.  I’ve been haunted by memories of Andrew recently and finally felt that it was time, urgently time, to finish this piece.  As I finally brought the files into Photoshop and started working on them, more memories flooded my brain.  Like how Andrew, as a young child, had always said “Jee Jie Joes” instead of “GI Joes” and frequently got tripped up between “brought” and “brung.”  The trip our families took to Mount Shasta together.  Their shelties, who seem huge in my mind, but who I know were actually smallish dogs.  Drawing together, playing in the sprinklers, going to the beach, sharing snacks, going to the park, getting into fights, crying and making up again… all the things children do.

I’ve said before that one of the things I mourn in this is that I missed out on getting to know Andrew as an adult.  I’ve tried to remember that lesson and have made a point to stay in touch, or get back in touch, with people in my life.  I won’t get another chance at Andrew, but I can try and apply the lesson to other friendships.

None of these men deserved their fate.  They were true heroes, actively running into the worst, most dangerous situations.  That is what the Hotshots were there for; an elite team of firefighters comparable to Navy Seals or Spartans.  The only thing I can try and do about it is make an attempt to honor them and their sacrifice.  I know that I will always fall short in this goal, but it’s important to try nonetheless.  I am also keenly aware that this is not about me or my pain.  The pain of Andrew’s family and loved ones is something I can only imagine.

The Hotshots were trapped; birds unable to fly away.  There was no escape from the flames.  But what remained was love. Love triumphing over the flames by preserving Andrew’s wedding ring and bracelet with his personal motto.  Love for the people they were protecting, though they would never meet them.  Love for their families, though they left them behind in the line of their duty.  Love for each other.  Love for humanity.  Just love.

That love is what I wanted most to capture in this image and I hope it shines through.

Singed Wings - detail

Singed Wings

Singed Wings - detail

Singed Wings – detail

Singed Wings - detail One of the three smokey roses scattered through the photo.  I used an image I had taken of beautifully carved roses on a tombstone, which felt so fitting.  The delicacy and beauty they add are still tinged with sorrow.

Singed Wings – detail
One of the three smokey roses scattered through the photo. I used a photo I had taken of beautifully carved roses on a tombstone, which felt so fitting. The delicacy and beauty they add are still tinged with sorrow.

Singed Wings - detail

Singed Wings – detail

Singed Wings - detail

Singed Wings – detail

My heart goes out to the family and friends of all 19 fallen heroes especially as we approach the anniversary of this tragedy.  I’m sure it’s an extremely difficult time for all of them.

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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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