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 – © 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!

• Rent or buy the new ME documentary, Forgotten Plague.  Consider hosting a screening of it for your friends and family!
• Write a one-click letter to Congress to increase ME’s funding.
• Join in the #MillionsMissing protests in Washington DC and other locations through the world on May 25.  You can participate even if you’re too unwell to join in person or if there isn’t a protest near you!
• Wear a blue ribbon in real life or add one to your social media avatar.  Thanks to MEAdvocacy.org for the instruction!
• Start a discussion, link to articles, blogs, videos and/or artwork that discusses ME or other invisible illnesses that will help spread awareness.  Add a #may12th hashtag to your posts!
• Donate to an ME-related group, such as the Microbe Discovery Project, or help support those with invisible illnesses by purchasing items from our online shops.  Get some cute awareness-raising jewelry from The Hopeful Spoon, crystals to meditate and heal with from Mineralism Crystals (or just enjoy looking at!), museum-quality fine art prints from yours truly, give yourself or someone you love the gift of self discover and art with my online photography course Introspective, or a wide variety of fun and practical items from my RedBubble shop!
• See this article from ProHealth.net for more ideas!
• Watch and share the video below which I made last year:

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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Silencing Again

On February 10th, the Institute of Medicine released the findings of a report it had been working on for approximately a year and spent over a million dollars on.  Their task: come up with new diagnostic guidelines for patients with myalgic encephalomyalitis/Chronic Fatigue Syndrome and decide on a new, single name to replace both ME and CFS, which are generally used interchangeably for the same disease.*  Considering that ME/CFS gets only a pitiful three million dollars in government funding per year (which may sound like a lot, but consider that male pattern baldness, which is not life-threatening, gets $16 million, and you realize how very, very little that is), this is a cost we cannot afford.

Silenced © Sarah Allegra, model Travis Weinand
Read on for the full image!

The IOM’s findings are so upsetting to me, I can hardly organize my thoughts into rational sentences.  But while I may want to sob and punch a hole through the wall (which, let’s face it, I’m probably not strong enough to do anymore), I need to speak up about these incredibly vital points and I need to do so in a way that other people won’t dismiss me as merely a “hysterical woman.”

I’m going to be generous here for a minute; here are the few good things gleaned from the IOM’s 304-page report.

• They recommend retiring the trivializing name “Chronic Fatigue Syndrome.”  I fully agree with that.  I could not agree with that more.
• They admit that far more research needs to be done to understand ME/CFS.
• They admit that ME/CFS is a real and physical disease.
• They recommend that the Department of Health and Human Services should develop new, more accurate ways of diagnosing ME/CFS.

For about half a second, I was happy when I heard the IOM recommended changing the name of “Chronic Fatigue Syndrome” to what they’ve proposed: “Systemic Exertion Intolerance Disease.”  Mostly I was happy because I saw the word “disease” instead of “syndrome.”  And I will, begrudgingly, admit that their SEID is ever-so-slightly better than CFS.  If CFS is a kick in the balls, SEID is a kidney punch.  Neither is good, but I suppose if i were given the choice between the two (and I were male) I might choose the kidney punch.

Inside Looking Out © Sarah Allegra – model: Katie Johnson

Here’s what’s wrong with SEID.

The IOM complained that the name “Chronic Fatigue Syndrome” is demeaning and only focuses on one symptom.  Those are both true.  They also decided that “myalgic encephalomyalitis” was unsuitable because it also only focused on one symptom.  That is not true.  “Myalgic encephalomyalitis” literally means “muscle pain and inflammation of the brain.”  You have two symptoms being named, both of which are hallmarks of the disease and which have tons and tons of scientific proof backing them up, as well as patients’ own experiences aligning with them.  Additionally, more documentation can be found in the UK documentary Voices From The Shadows where multiple autopsies of patients who died from ME/CFS all showed inflammation in the same area of their brains.  Despite mountains of evidence to the contrary, the IOM decided that while nearly every person diagnosed with ME/CFS complains of chronic pain, that was not a general symptom for ME/CFS patients, and thus should be excluded from the name.

I know a lot of people with ME/CFS.  We are a close community as this disease ravages us in ways only other sufferers can truly understand.  We form deep online friendships since we are so often unable to interact with people in meaningful ways in the real world.  We rely on each other for advice about treatments and medications, as we almost always know more about our disease than our doctors do.  None of my doctors had ever even heard the name “myalgic encephalomyelitis” until I said it to them.  We are our own biggest support system.  And I do not know a single person with ME/CFS who does not experience chronic pain.  Personally, I have not had a pain-free day in over seven years.  To have healthy outsiders negate the 2,555+ days of pain I’ve experienced and say it’s not an important symptom is beyond a slap in the face.

A Fading Girl © Sarah Allegra – model: Brooke Shaden

But even those slights aside, “Systemic Exertion Intolerance Disease” fails their own test by simply naming only one of our other common symptoms; exertion intolerance.

Exertion intolerance is a very real thing for ME/CFS people.  And it doesn’t have to be physical exertion; mental or emotional exertions can leave us just as sick for days, or weeks, sometimes months… or forever, as physical ones.  For years and years, doctors have been advising us to exercise our disease away.  And for many illnesses, exercise does help.  But with ME/CFS, exercise can be absolutely deadly.  Push yourself too hard and you can make yourself house-bound or bed-bound… sometimes for the rest of your life.

We walk a knife’s edge every day, trying to judge what we can and cannot do.  It’s generally considered a fairly good idea within the ME/CFS community to try and remain as active as you can without overdoing it and making yourself worse.  It’s like playing a very stupid game of blackjack with your energy each day.  You don’t want to lose any ability to be active that you do have, but even hitting 21.01 could mean a week of being stuck in bed.  It’s a serious and deadly game we are forced to play every single day.

So yes, exertion intolerance is a very real and dire threat, but even given that, we’re still left with a name which merely cites one of our symptoms again.  And as I said, SEID is ever-so-slightly better than CFS simply because of trading out the word “symptom” with “disease.”  Laymen hear “syndrome” and it doesn’t sound serious; replace it with “disease” and their view shifts.  I have serious doubts that busy doctors, who have no time to read a 304-page document, will hear anything but “exercise avoidance” in place of “exertion intolerance.”  After all, exercise is a cure-all!  There’s nothing it doesn’t help!  That’s the mantra they’ve been taught again and again and it will take very dramatic events to undo those decades of conditioning.

Vanity’s Muder © Sarah Allegra – a self portrait I created after starting to experience ME-related hair loss

Almost every ME/CFS sufferer I know has had at least one doctor who refused to believe there was anything physically wrong with them.  I had one of those too.  Mine decided I was simply depressed and anxious.  In a way, she was right; I was getting very depressed because I felt terrible every single day and nothing was helping it, and I was becoming increasingly anxious about my appointments with her because I was sensing she didn’t believe me.  I have experienced clinical depression.  There was one solid month in a very dark period of my life where I had to rationalize not killing myself every single day.  I know what depression looks and feels like.  It is a completely different beast than ME/CFS.

It’s like saying sharks and bears are the same threat.  Well, no, one lives in the water and generally attacks you if he mistakes you for a seal; the other lives in the woods and might attack you if she thinks you’re a threat to her cubs…  You get the picture.  Both can kill you, but trying to issue a blanket statement that they are both the same threat, coming from the same place, using the same methods to avoid them would be absurd.

The Blue Ribbon © Sarah Allegra – Model: Katie Johnson

ME/CFS is not “just” depression.  I put “just” in quotes because I know how serious depression can be and I never want to be dismissive of it.  It kills too.  But they are completely separate entities.  There is a tendency for people who have ME/CFS to become depressed because they have ME/CFS, but that does not mean they are one and the same.  Almost anyone with a chronic, incurable illness is going to get depressed.  You never hear people accusing cancer patients that the cancer is all in their heads; they’re just depressed and if they went for a nice jog, everything would be fine!

And lest you think I am fear-mongering and making ME/CFS out to be more than it is, let me remind you of a quote by Dr. Nancy G. Klimas, who specializes in treating both HIV/AIDS patients along with ME/CFS patients.  In 2009, she was quoted with the following: “…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.”

The overwhelming majority of ME/CFS patients would have liked to have had our name officially changed to “myalgic encephalomyelitis.”  We made our preferences known loudly during the entire time the IOM worked.  ME is, after all, what most of the modern world calls it.  It was only because of one insidious man that the United States switched to “Chronic Fatigue Syndrome.”  And why was such a name invented?  To create a legal loophole where insurance companies would be able to deny sufferers coverage.  The schism between the United State’s naming of the disease and the rest of the world began with greed from insurance companies.  These are your US tax dollars at work.

And what’s even worse is that there is speculation that the IOM is intentionally confusing the issues around ME/CFS; making the definition unusably broad, ignoring patients’ wants and needs.  Once again, making sure we’re worse off than we were before they came along.

Breakable © Sarah Allegra – a self portrait

The second of the IOM’s tasks, coming up with a diagnostic criteria for ME/CFS, was also unnecessary.  Two excellent, specific and scientific definitions already exist (and are used by most of the modern world as well.)  It was loudly advocated by ME/CFS patients and specialists alike that the IOM adopt these guidelines.  In fact, 50 of the world’s leading ME/CFS experts sent letters asking that the IOM’s contract be canceled along with countless letters written and petitions signed by patients.

That brings up another salient point… who are these people chosen by the IOM for this heavy and delicate task, ripe with repercussions which will ripple through the decades?  They are 15 people, only seven of whom specialize in ME/CFS in any way.  Some are not even doctors.  How is this at all ok?  How was it allowed that a group of people who don’t have anything to do with the disease at hand would be asked to redefine it?

Let’s give them the benefit of doubt for a moment and assume they’ll really try and do a good job.  Who knows.  What did they come up with?  They decided that to be diagnosed with ME/CFS, you need only three of the following core symptoms:

1. A substantial reduction or impairment in the ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by fatigue – which is often profound – of new or definite onset, not the result of ongoing excessive exertion and not substantially alleviated by rest.
   
2. The worsening of patients’ symptoms after any type of exertion – such as physical, cognitive, or emotional stress – known as post-exertional malaise.
   
3. Unrefreshing sleep.
   

And at least one of the two symptoms is also required:

1. Cognitive impairment.
   
2. The inability to remain upright with symptoms that improve when lying down – known as orthostatic intolerance.

Do you know how many diseases and conditions fall under this umbrella?  It’s so broad, it’s utterly useless.  You wouldn’t even need to have a physical ailment to qualify for ME/CFS.  This is a big deal.  If this new standard is adopted, this is the criteria that will be used to find patients to test new drugs and treatments.  Can you imagine how murky and confusing the results will be if your patients could potentially have almost any disease?  Answers will never be found under these guidelines.

In Between Awake and Sleep © Sarah Allegra – a self portrait

As people online have pointed out, SEID backwards spells DIES.  And it’s hard to feel like that isn’t exactly what the IOM, HHS and CDC want us to do.  We are an embarrassment to them because they don’t know what our disease is, what causes it or how to fix it… and, of course, a great deal of that confusion was created intentionally; a fact they’re desperate for us to forget.  They would rather sweep us under the rug, ignore us, talk over us.  And sadly, that is very easy for them to do.  With so many patients house- and bed-bound, it’s extremely difficult to show our numbers, organize protests, or object to our treatment in any meaningful ways.

But this is what they haven’t counted on.

When you are backed into a corner by illness, you can either crumple under it or develop a steel core in the deepest part of your soul to bear it.  Some days you may flip back and forth between the two, but ultimately, your will strengthens.  The stakes are personal to us and they are very high.  Though it might take the help of our caretakers or cost us a week of energy or send us back to bed for months, we will not be silenced again.  Shifty, snakey policy-makers may have the energy and money we don’t, but they do not have this core to draw on.

We will fight.  And we will win.

Silenced © Sarah Allegra – model: Travis Weinand

Are you pissed off?  Good.  We need you to be pissed off.  We need a public outcry so loud that it simply can’t be ignored.  And we need the healthy, compassionate people of the world to join us in demanding change.

Here are some things you can do:

Pass around the image above, Silenced, on your social media platforms.  Linking to this post would be helpful!  I am giving you permission to use the Silenced image to help get our message across!  Put it on Facebook, Twitter, Instagram, Tumblr, Pinterest… wherever you hangout online!  The more people who see it and become aware of the problem, the better!

Tweet to @TheIOM, @HHSgov and @CDCgov letting them know your displeasure in the proposed name change.  We DO have the power to stop this from becoming our reality!  Please use the hashtag #MENotSEID.  Not sure what to say?  Here are a couple examples you are free to use!

.@TheIOM @HHSgov @CDCgov: ME/CFS research will be useless with the name SEID. #MENotSEID

.@TheIOM @HHSgov @CDCgov: SEID is still only naming a single symptom. #MENotSEID

.@TheIOM @HHSgov @CDCgov: ME/CFS patients will not be helped by SEID, it will only hurt us further. #MENotSEID

.@TheIOM @HHSgov @CDCgov: MECFS patients reject SEID and demand the name ME! #MENotSEID

.@TheIOM @HHSgov @CDCgov: Why are we spending a million dollars redefining and renaming what doesn’t need it? #MENotSEID

.@TheIOM @HHSgov @CDCgov: ME/CFS patients WILL NOT be bullied into silence over the proposed name SEID. #MENotSEID

Additionally, you can:

Submit answers to a survey about what you think of the IOM’s proposed name change.

Sign this petition to stop the HHS-IOM contract and accept the CCC [Canadian Consensus Criteria] definition of M.E.

Or this petition!

Every voice counts!

 

Would you also like to support me in my quest to continue making art in spite of ME’s constant presence in my life?  How lovely of you!  🙂  I have added the new Silenced image to my RedBubble shop as well as my Etsy store; you can get it (or most other images) as museum-quality prints, tshirt, stickers, covers for your phones and i-Devices, travel mugs, blank greeting cards, even pillows and tote bags!  Every purchase goes toward helping me continue to produce new art as well as spend the countless hours necessary to delve into issues like this post.  And every single purchase is hugely appreciated!

We Rise Again © Sarah Allegra – a self portrait

Images are from my Enchanted Sleep series, which portrays living with ME/CFS/fibro.**

Istagrammers!  Here is a square version of the image, already Instagram-friendly 🙂

Silenced © Sarah Allegra – model: Travis Weinand

*When you dig into it, no, ME and CFS are not describing the same disease, mainly because the current US diagnostic guidelines for CFS are so sloppy and wide-open.  Further information on the subject can be found here, along with countless other places online.  Since there is a lot to talk about in this post as is, for brevity’s sake, I’m using the term people are most familiar with, ME/CFS, though the definition I have in mind is the CCC and ICC definition of ME.

**Fibromyalgia is, for the most part, also used interchangeably with ME/CFS in the US.  This is not entirely accurate, much like ME and CFS are not really the same thing, but for the sake this post, when I talk about ME or CFS, I am also talking about fibro.

 

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Caught In The Clouds

I actually shot the images for this self portrait back in 2012 sometime, as I recall, and it just kept getting pushed down on my list of photos to edit.  I generally prioritize images which have other people modeling in them, since they took the time and energy to come model for me, so sometimes my self portraits get a little forgotten.  This was one which I definitely did not want to let get completely forgotten though, so as soon as I had the time, I eagerly jumped into editing it!

I don’t think many of you will be surprised when I say I’ve had my share of troubles with clinical depression.  Even as a teenager, the seeds were being sewn.  It’s something I’ve struggled with on and off for most of my life.  I’ve been to many therapists, tried countless treatments, medications, alternative therapies, read books, talked it out, journaled, and, of course, done art therapy.  Art therapy and submerging myself in nature, with animals and my friends and loved ones are the things that seem to work best for me, but everyone is different.  I have mostly accepted that it will probably be with me to some degree for most of my life, which is an easier future for me to face than one where I’m constantly disappointed by finding myself under its shadow again.

***Side note: ME/CFS/fibro are often tried to dismiss as simply depression or other mental health problems.  They are absolutely NOT the same thing.  I have experienced both and they are completely different.  Where it gets tricky is that people with ME/CFS and fibro often develop depression secondarily to their physical illness, but it’s usually because they feel terrible every day, many people refuse to believe they’re actually sick and they suddenly lose huge, important parts of their life to their illness.  I challenge anyone to not become depressed in those conditions.  What drives me crazy is that no one suggests that patients with cancer, for example, who develop secondary depression are “simply” mentally ill, but it’s an extremely common conclusion for doctors to jump to regarding ME/CFS and fibro patients.  I’ve had doctors tell me the problems were all in my head.

None of this is to say that mental health problems are somehow less important or real than physical health problems, they are simply two distinct things and require completely different treatments.  The simplest explanation I’ve come across to illustrate the differences between the two is this: ask a person with depression what she would want to do the next day if she woke up feeling completely well.  She’d probably have trouble answering you.  Depression robs you of all joy and motivation.  Ask someone with ME/CFS or fibro the same question and they’d give you an entire list of things they’d like to do.  ME robs your body of the ability to do things, but doesn’t take away the desire to do them.***

Since the severity of my depression waxes and wanes, I tend to think of it as an entity which I am periodically under the attack of.  Sometimes I imagine it as a malevolent cloud, sometimes a huge dragon; something which is dark and dangerous and can completely envelop me.  When I find myself thus enveloped, I repeat a mantra over and over to myself; “The clouds will lift.  The clouds will lift.”  It might be hours, days, weeks or months, but I know that at some point this battle will be over and I’ll have made it through to the other side.

I’ve written about him before, but Andrew Soloman’s incredible Ted Talk on depression bears repeating.  It’s beautifully insightful, hopeful, even when I’m under the darkest cloud and most importantly, lets me know I’m not alone in how I feel.  It’s also supremely excellent at explaining clinical depression to those who have never experienced it firsthand; an invaluable gift.  As Mr. Soloman states, “half the purpose of art is to describe [depression.]”  I could not agree more.

I don’t know whether we’re friends because we all share the same demons, or if I just happen to have a large percentage of good friends who have their own mental health struggles, but I wanted to create this image to show not just my battle, but theirs… and indeed, the battle everyone with depression finds themselves flung into.

When you’re in the throws of it, you don’t feel strong or brave, but I know that we are.  We bear terrible burdens which can break the human soul and every time we don’t succumb to it, we should celebrate.  But mental health is still greatly stigmatized in our culture, so there is rarely any celebration; there is rarely any acknowledgement of the battle that rages at all.  I feel it’s important and part of my job as an artist to discuss these issues which we would like to pretend don’t exist.  If we deny depression, then we will lose the battle.  The only way you can fight it is by first saying that yes, it exists; yes, I am under its cloud; no, that does not me a less worthy person; yes, I am brave and strong even though I don’t feel like it right now.

So this image is dedicated to all my dear friends who have been under that same cloud.  To my friends who have not experienced the cloud themselves, but support us when we’re in the throws of it.  Who love us, accept us and keep us going.  Shame and secrecy feeds the depression monster.  Truth and soul baring disarm it, love and strength defeats it.   Many, many thanks to my dear friends and loved ones who help me through these battles.  I just hope I can do the same for them.

Let’s take a step toward making the world a better place.  Let’s finally let the stigma around mental illness die.  No one would ever, ever choose to be like this.  We fight unimaginable battles to overcome it.  Instead of shaming those covered in battle scars, let’s celebrate their success.  They made it through.  There may be more fights, but they will make it through them too.  They will if we start supporting them instead of shaming them.

To everyone who knows this malevolent cloud firsthand, you are beautiful and strong.  And the clouds will lift.

The Clouds Will Lift

The Clouds Will Lift – detail

The Clouds Will Lift – detail – I made custom bat wing brushes to construct the clouds

The Clouds Will Lift – detail

If anyone would like to share stories of their own mental health struggles, please share it in a comment!  Talking openly about these problems is the first step to erasing the stigma.

*****

Just a few more days!!

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

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Shadows and Light

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

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.

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.

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.

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.

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.

A full mantle of leaves

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.

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.

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

Almost done!

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

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

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 – detail

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

Pliable Reality – detail

Pliable Reality – detail

Pliable Reality – detail

 

Where Black Stars Rise

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 – 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 – 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!

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

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  🙂

 

 

*****

 

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

 

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My ME Story

***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 – 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 specific.  However, 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”

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

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

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, 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 http://wp.me/p17spB-EX #MEAwareness #CFS #SAPrintGiveaway

*****

ME/CFS knows no social or economic boundaries; it affects all equally w/out mercy. http://wp.me/p17spB-EX #MEAwareness #CFS #SAPrintGiveaway

*****

ME/CFS in not in our heads & cannot be cured with exercise & a better attitude. http://wp.me/p17spB-EX #MEAwareness #CFS #SAPrintGiveaway

*****

ME/CFS is not a “female” disease; 20% of sufferers are male. http://wp.me/p17spB-EX #MEAwareness #CFS #SAPrintGiveaway

*****

ME/CFS isn’t just about being “tired,” it ravages every single part of the body. http://wp.me/p17spB-EX #MEAwareness #CFS #SAPrintGiveaway

*****

ME/CFS can be just as deadly as MS, HIV and AIDS, yet it is largely ignored. http://wp.me/p17spB-EX #MEAwareness #CFS #SAPrintGiveaway

*****

More exercise and a better attitude will not cure ME/CFS. http://wp.me/p17spB-EX #MEAwareness #CFS #SAPrintGiveaway

*****

We’re not chronically fatigued, @CDCgov. We have myalgic encephalomyelitis. http://wp.me/p17spB-EX #MEAwareness #CFS #SAPrintGiveaway

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!

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Flora Awakens

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

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.

 

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.

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!

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

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 almost-finished train!

 

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

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!

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.

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.

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.

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

 

Joy Of Renewal

Joy Of Renewal – detail

Joy Of Renewal – detail

 

Life Eternal

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 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!

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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The Shadows Lengthen In DreamWorld

Along the shore the cloud waves break,

The twin suns sink beneath the lake,

The shadows lengthen

In Carcosa.

This is a preview of a new set I’m currently editing for DreamWorld. This set will be important to the entire series as it marks the entrance of the first non-benevolent character.

At first I had envisioned this character, whom we only get a glimpse of for the moment, as a more Puckish, trouble-maker character, but as I worked on the costume and planned the shoot, I was also watching the first few weeks of True Detective. True Detective (one of the most original, mythic, challenging, well-acted and completely-fabulous-in-every-way show I’ve seen in a long time) had already begun making dark allusions toward The King In Yellow, and I found it seeped into what I was doing. And the darker I took the character, the more right it felt, so it was perfect timing on the part of the universe.

My model for this shoot is the incomparable Dan Donohue, an actor known for his extensive stage work, including just about every Shakespeare play you can think of and Scar, in Disney’s Broadway production of The Lion King.  Dan is currently rehearsing for the Oregon Shakespeare Festival where he will play Richard the III in Richard the III, along with Mr. Murry in A Wrinkle In Time.  While Dan himself is one of the sweetest, sincerest, most lovely and generous people I’ve had the pleasure to work with, he has the magical ability to summon inner darkness on whim. I had him start the shoot a little more Puckish and less evil, and let him get more and more dangerous as we progressed. And, of course, I ended up loving the darkest shots the best.

I have the wonderful problem of having too many wonderful images to choose from, but I’ll get by somehow. I wanted to send this one out into the world today, not only to harken the rest of the set, but to celebrate Dan’s appearance on Brooklyn 99 tonight!  It’s a fantasic comedy in its own right, and Dan will be a great addition.  He’s one of those all-talented people who is good at just about everything. It should be a lot fun to watch, especially since Stephanie Beatriz, aka Rosa is his real-life girlfriend!  Think Rosa will warm up to him?  Let’s find out by watching tonight!  🙂

* * * * *

In other news, there are some new ME/CFS developments which could be incredibly damaging to how the medical communities, and in a trickle down way, the public in general, think of us and treat us.  The short story is that the government has hired a new commitee to come up with a new definition for ME/CFS.  Not only is this completely unnecessary as we already have two extremely comprehensive definitions in the International Consensus Criteria and the Canadian Consensus Critera (both PDFs), but because the team of 15 people they have assembled is comprised of only 8 ME specialists.  I’m having trouble finding the data at the moment, but the remaining specialists in the team may not all even be doctors.  This does NOT seem like the optimal group.

With the pittance given to ME research in the US, it seems absurd to spend nearly 1/4 of it reinventing the criteria wheel, and even more absurd when so many of them had no prior knowledge of ME as an illness.  The ineptitude of the group can be read about in the sample letter below.

There is something we can do to combat this nonsense.  You can go to: http://www.contactingthecongress.org/, type in your zip code and find your representatives.  Email them the following:

Recently, the IOM released its report on Gulf War Illness recommending that the illness be named “Gulf War Illness” and that the two existing case definitions be used.  In short, the IOM has done exactly nothing since they were hired four years ago– for $840,000 – to come up with a case definition.

The illness, they said had “too many symptoms.”  HHS has now hired IOM to “define” Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – another complex illness with many symptoms – to the tune of 1 million dollars. And, like the committee hired to review GWI, the IOM committee for ME/CFS is primarily composed of non-experts – people who have no research or clinical experience with the disease. 

Fifty of the world’s top ME/CFS experts have formally protested the IOM contract to Secretary Sebelius. They have pointed out that there already is a case definition for ME/CFS designed by experts, the Canadian Consensus Criteria, and that having non-experts devise a new definition will set research and patient care back by decades.  These experts are backed by thousands of patients, some of whom publicly voiced their opposition to the contract on January 27, 2014 at the IOM public meeting. 

Jim Binns, chair of the Research Advisory Committee on Gulf War Veterans’ Illnesses says, “The conclusions of the report show that it was a waste of money. The committee never had the expertise or the process to do a case definition.”  The current IOM process to review and redefine ME/CFS is an even bigger waste of money. It also a waste of time, which patients who are desperately ill with this disease cannot afford to lose. 

Please support us by asking HHS to cancel the IOM Review of Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and to follow the recommendation made by the experts: Immediate adoption of the Canadian Consensus Criteria for ME/CFS.

The implications of what this group decides could be devastating to the already disadvantaged ME/CFS sufferers.  You can, of course, add your own details, but the letter above is a good sample.  One thing we have seen is that this group can respond to public pressure and outcry, so let’s make them respond!

My deepest thanks to anyone who is willing to do this!

The Shadows Lengthen

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Kicking Cancer’s Ass With The Yellow Knight

I have known Erick Reidell for several years, but he and Geoff go way back to high school.  Erick has always been an adventurous, creative, gregarious person, and we found a lot of artistic common ground to talk about when I first met him as Geoff’s new girlfriend a little over five years ago.  Which was a relief to me, since I just wanted Geoff’s friends to like me!

It was a shock to everyone when he was diagnosed with cancer that same year.  Cancer cruelly seems to always pick on the best, most wonderful people.  Erick would not be anyone’s “typical” cancer patient.  He doesn’t smoke, lives healthfully and is always full of optimism and cheer.  That first year Geoff and I were dating, Erick had a seven-pound tumor removed from his abdomen.  There were many breathless months while Erick endured chemo and treatments and recovered from surgery.  I vividly remember the night Erick’s wife called Geoff to tell him that the most recent scan had come back clear, and for the time being at least, Erick was in remission.  Everyone was, of course, extremely relieved.

Since then I’ve gotten the chance to get to know Erick better myself, and I can say he is one hell of a guy.  Hard-working, artistic, funny, a great husband and dad and always ready to face the next challenge his body throws at him.  He is such a lovely man that I suggested he become ordained online so Geoff and I could have him marry us at our wedding, which he did.  The wedding was, of course, a wonderful, beautiful blur of a day, but it will always mean so much more looking back and remembering it was our dear friend, and not some stranger, who performed the ceremony.

Alex/my man of honor, me, Erick, Geoff and Geoff’s dad/best man, Larry.

Late winter, after several years of being clear, Erick’s cancer once again returned, and once again, he beat it.  Not without great effort from him and his doctors, but he did it.  When we knew we’d be seeing each other over Christmas, Erick asked to be a part of DreamWorld, which I gladly said yes to.  I also felt that a very serious charge had been given to me.  I wanted to make sure I did something special for Erick, something true to DreamWorld, something that spoke of his struggles and also something that would ring true to other cancer sufferers.

Out of these swirling thoughts came the Yellow Knight.  Yellow, since that color is associated with cancer-awareness ribbons, LiveStrong bracelets and the like.  His armor is made out of little bits and swirls of ribbon (or paper, as it ended up, but it looks like ribbon) much like the awareness ribbons.  Though ribbon would seem like a frail and flimsy defense, he defeats the horrible cancer-monster.

I’ll talk briefly about how I made Erick’s costume on, again, a next-to-nothing budget.  His cloak was the same one I’d used in Paul Telfer’s Sleeper’s Sentinel photos, so that was already made.  I wanted to make a chestplate and bracers for Erick’s armor.  Ihough I’d originally planned to use actual ribbon, I was dissatisfied with the ribbon selection both in my ribbon drawer and the craft store, so I decided to use paper instead.  That was also quite a bit less expensive, so double win!

For the chestplate, I stared by gluing two layers of cardstock together to give it a firm, stiff base, and covered one side in muslin for a more “polished” finish.

Matching up cardstock and fabric shapes.

Cardstock back of the chestpiece.

And fabric front, with a slight seam down the center to help shape it.

You can see my black and red suitcase on the floor, which just shows how hurriedly I was trying to put this together before we left for our trip.  I got the bracers made too; fabric shapes with cardstock bones to give them sturdiness.  I was planning on just tying the bracers on with ribbon, and I figured I’d do the same for the chestpiece since you wouldn’t be able to see the back or sides anyway, so the problem of keeping them on was easily solved.

Bracer with cardstock bones.

At this point, we really had to leave, so I just cut lengths of paper and used my rotary cutter to slice nice, straight even strips into them.  I packed my glue gun and other supplies I might need and we hit the road.

Our time visiting family was short, so we decided to shoot right after Christmas.  I spent one long afternoon of our trip bent over the chestpiece and bracers, hot gluing the ribbon strips to them as quickly as I could.  I alternated the colors, types and thicknesses  the papers frequently to give it more depth, using cardstocks, vellum and tissue paper.  Unfortunately, I was so busy feeling stressed about getting it done before the shoot the next morning, I completely forgot to take photos of the gluing-on process.  But you can probably imagine what a slightly-crazed woman wielding a glue gun in one hand, paper ribbon strips in the other, muttering dark curses under her breath, hunched over fabric/paper constructs and commanding the glue gun to heat up faster and just GLUE looks like.

The morning of the shoot came, and I’d managed to finish the costume (though my lower back was still complaining from having hunched for so many hours).  I knew I’d be doing a lot of work to the cancer-monster in post, so I simply had one black trash bag bunched up into a ball which Erick could punch, and I’d made a very, very rough wire frame for another black trash bag into something that was somewhat wing-shaped.

I scotch-taped the bags as needed to hold their shapes and let Erick pummel the central mass of the creature.  Geoff helped tremendously with flipping the cloak and holding the wings up for me to photograph separately and composite into the final image.  All said, it took perhaps half an hour.  The park we were in was just beautiful and quite deserted given the very cold weather and early hour, and I couldn’t resist taking some snapshots of plants covered in jewel-like snow.  I’ve said it before, but as a California-native, snow is UTTERLY MAGICAL to me whenever I encounter it.

Little Jewels

Erick looked incredibly noble and at home in his costume, and I’m so glad Geoff reminded me to take a portrait of him not in action.  They’re quite different shots, but I think a lot of Erick’s quiet, inner strength and grace shows through, especially in the second portrait.

After that, we all had a lovely breakfast at a local cafe and warmed up with hot food and coffee.  A successful shoot!

I hope these image can be an inspiration to others fighting their own battles; perhaps simply reminders to not give up quite yet.  If you have had experiences with cancer or other long illnesses yourself, I would love to hear from you!  I hope I can make the cancer community proud.

And with that, let’s see the finished photos!

The Yellow Knight

The Yellow Knight -detail

Ribbon Armor

Ribbon Armor – detail

Thank you, Erick, for coming to play in DreamWorld!  🙂

This is not the time or place to get into it all, but it seems I will be heading into another of my own health battles, of the bureaucratic nature this time, and any well wishes and prayers would be appreciated!

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An Artist Profile By Katie Johnson And A New ME Photo

My dear friend and frequent collaborator Katie Johnson has recently started a new video series which profiles the artists she works with frequently.  I was honored to be featured in the first of her videos!  She put a great piece together which includes an interview with me and lots of behind-the-scenes peeks into how we work.

Take a look!

I often think of lines from the song the princess sings in Peter S. Beagle’s legendary work The Last Unicorn:

“Oh, I am a king’s daughter
And I grow old within
The prison of my person
The shackles of my skin

And I would run away
And beg from door to door
Just to see your shadow
Just once and nevermore”

“The prison of my person, the shackles of my skin” perfectly describes how I feel about my physical body most days.  Though I doubt Mr. Beagle had ME in mind when he wrote it, it resonates so strongly with me.  And I’m sure people with other chronic illnesses will be able to identify with it; it’s a pretty universal problem across the chronically ill spectrum.

Feeling so trapped has always made me instantly know something of what Amalthea felt at finding herself in human form.  I imagine it was even harder for her though.  The disharmony we chronically ill feel with our body was something I’d wanted to express in my Enchanted Sleep series for quite a while and I was glad to finally bring the image to life!

There’s something more visceral about images than you often can’t replicate with words.  Words are powerful, they can build and tear down mountains, but the visual world offers the same information in a different form.  One that, if used well, can strike like a snake and bring instantaneous understanding.  That’s my hope with this series; to illustrate the life of a person with myalgic encephalomyelitis in a way that reaches where words cannot.

I will admit… I’d beg from door to door just to catch a glimpse of a unicorn’s shadow too 🙂

Here’s a look at the final image from our shoot:

Inside Looking Out

And a detail shot:

Inside Looking Out – detail

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Editing A Wind Spirit

Don’t forget!  The Modern Fantasy Summit featuring Peter S. Beagle, George R. R. Martin and my art (as well as the art of others’) will be exhibited tomorrow, the 25th, at the Jean Cocteau Cinema in Santa Fe, New Mexico!  See my last post for more info about it.  I would kill to be able to see those two interview each other live!  And if anyone can get some snapshots of my pieces up on the wall, I will love you forever 🙂

* * * * *

A few days ago when I posted my recent photo, Where The Earth Meets The Sky, reader Addie Talley requested a behind-the-scenes look at how I’d edited the image.  Since I’d been meaning to do more videos like that anyway, it seemed like the perfect occasion!

Please check out the video I made below!

I’d like to mention that this is another example of not needing expensive props or costumes to create something special.  Planning and hard work, yes, but money, no.

And also… happy photography birthday to me!  I’ve been shooting for four years as of today 🙂  I think I will celebrate by trying to kick the cold I’ve come down with.  Champagne has to be good for you when you’re sick; it kills germs, right?  🙂

Where Earth Meets The Sky – click to follow the link and see me much larger!

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