The Huge, Glass Mountain

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

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

Spoon Theory – a self portrait

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

“…But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”

In Between Awake And Asleep – a self portrait

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

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

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

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

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

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

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

Hey, CDC, change our fucking name already.

Exoskeletonation – a self portrait

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

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

The Blue Ribbon, 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

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

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

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

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

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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

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

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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, second and third posts this week about ME.

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

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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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Rectifying Religion

Sundance Channel’s new six-episode drama last year had my attention when, during the trailers, I heard the words “from the producers of Breaking Bad,” and “How does it feel to be free but not exonerated?”  My ears were sufficiently pricked.

Starting intentionally slowly-paced, the show gives you time to warm up to it, get to know it and its characters well.  You come to love or loath them all quite intensely by the time the end of episode five comes and leaves you gasping.  The first time I watched the show, I’d recorded them on the DVR and was watching while I edited; I rarely watch TV without editing.  I was enjoying myself the whole time, but at the end of episode five, I literally stopped breathing for a few seconds.   And I was so glad I could immediately launch myself into episode six.  It was compelling enough for me to set my editing completely aside, and I wept through almost the entire second half of the last episode.  To say it hooked me would be a dramatic understatement.

Images copyright by Sundance Channel.

I kept those beautiful, perfect six episodes on the DVR for a long time.  In fact, I recall only feeling comfortable deleting them when I knew that the season would be released on DVD soon.  I was compelled to go back and watch them over and over again.  Like the very, very best story-telling, there is enough for you to grab onto the first time through, but it has so many layers and levels, you pick up new details and nuances each time you experience it again.  And good heavens, how ballsy is Ray McKinnon, the show’s creator, for waiting until the very last moments of episode five to sink that hook into your mouth?

Rectify follows the story of Daniel Holden, a man who has spent the last 19 years of his life on death row for the brutal rape and murder of his highschool girlfriend.  New DNA evidence has emerged to show that Daniel at the very least could not have been the sole perpetrator, and possibly wasn’t involved in the murder at all, so he is released from prison but his name is not truly cleared.  Back home in the imaginary small town of Paulie, Georgia, everyone has an opinion on Daniel’s guilt or innocence.  The town has been steeped in this murder for the past two decades and everyone is prepared to fight for what they believe is the truth.  Is Daniel truly guilty or innocent?  The show bravely decides to not supply the viewer with the answer outright, but leaves you with enough breadcrumbs to follow if you wish.

Images copyright by Sundance Channel.

Rectify is perfectly cast.  I was new to Aden Young, but his strikingly soulful eyes and body language say so much for him without needing words.  Daniel was always shy and not much of a talker and spending 19 years away from society hasn’t helped that any.  To those who believe he’s guilty, his awkwardness is another nail in the coffin.  To those who believe he’s innocent, anybody would be a little awkward in his situation.  One of the most brilliant bits of the show is that through some very clever plot points, Daniel himself does not know whether he’s guilty or innocent.  The waters are murky for everyone.

I have to say, I love Daniel, in a way which almost rivals my love for Richard Harrow.  There’s something similar about both of their characters too; by no means are they interchangeable, but the Venn diagrams of their personalities overlap in some significant ways.  They both have an innocence, a sweetness and purity about them, despite some of the bad thing we know (or suspect) they’ve done.  I can strongly identify with both of them for their shyness, their introversion, their outsider-ness.  But while they both seem to have hearts shining bright with solid gold, we know there’s deep pain within them both, and we’ve witnessed them doing some bad things.  Often, I would venture, for good reasons, or at least what their character believed was a good reason, but they are not fresh, untrampled flowers of purity.  I think that dichotomy is what makes them such fascinating characters.

Images copyright by Sundance Channel.

There is a religious undercurrent to almost everything in the show, and if you were raised in a Christian house like I was, you’ll pick up on them.  Ray McKinnon deftly uses these subtle metaphors and allusions to underscore various points, sometimes answering your question for you, adding extra layers of meaning, or purposely confusing things even more.  Kerwin’s declaration to Daniel that he knows Daniel is innocent “Because I know you.  Because I know you.  Because I know you,” brings to mind Peter’s thrice-over betrayal of Jesus, and subsequent thrice affirmation of his love and devotion.  Even the fact that the show takes place in exactly six shows, over six days; this brings to mind “on the sixth day, God created man.”  The story is ultimately about Daniel’s new life, his rebirth into society, so the metaphor makes perfect sense.

The clarity over what’s real and what is not is always in question and only gets murkier as the season progresses.  The Goat Man, played by W. Earl Brown, is a perfect example of both those points.  Does he represent God, wrestling with Daniel  in the wilderness, or Satan tempting Jesus in the desert?  There is no ivy on the stature the Goat Man shows to Daniel, but there is the next day when he visits it with his sister Amantha.  Was the Goat Man real or not?  If he isn’t, where did that big wad of cash Daniel has come from?  God, Satan, real, not real… I could believe that the Goat Man is all these things at once.

Images copyright by Sundance Channel.

The end of the last episode by no means wraps things up tidily, but was incredibly satisfying nonetheless.  I was ecstatic when I heard that Rectify had been picked up for a second season, this time being given an entire 10 episodes to mesmerize us and fuck with our heads.  Will we find out the truth behind the murder Daniel was convicted of next season?  I hope so.  And I have my own strong theories about what will be brought to light.  Rectify, I will be glad to see you back.

Longing For Better Days – a simple self portrait which seemed appropriate for the immense solitude Daniel has endured.

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Concrete Cell

I want to give you all a few quick updates here on the blog.  First though, I’d like to introduce my first Blackfish-inspired photo today, titled “Concrete Cell.”  It is the first in a series, but I was too excited to share this photo to wait until they’re all finished.

The often-cited comparison of SeaWorld’s whale enclosures being the equivalent size of a bathtub to you or me not only deeply saddened me, but also sparked the idea for this photo.  Imagine it.  When you’re not forced to perform, you live in this sad, colorless, sterile world of concrete and shadows.  The intelligence of these whales makes their living conditions even crueler and more heartless; sentient beings shoved into tiny compartments where they die a little more every day.

If you also agree that SeaWorld’s practices are abusive and need to be changed, please see my open letter to Jack Hanna regarding his defense of SeaWorld.  You can read more about the issues there and take action with petitions to sign!Thank you to Katie Johnson for her beautiful underwater modeling in this!  Underwater modeling is a skill unto itself and quite tricky, but she makes it look effortless.

Concrete Cell

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

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

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