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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2013: High/Low

It’s that time of year when everyone with a blog is required to take a look at the previous year and take stock.  I like this tradition.  It gives you a sense of accomplishment for the things you’ve done and also brings to mind what still needs attention.

So what happened in 2013?  So much!

I signed a contract with Conlan Press, Peter S. Beagle’s publisher.  This has already brought some very exciting things about, and there are many, many more to come!

In The Lilac Wood

I created what I consider the first “real” DreamWorld piece.  By “real” I mean a full-fledged character was brought to life with costumes and props which took months to create and inventing new ways to bring about my vision on a shoe-string budget.  The inclusion of birds would also prove to be a frequently occurring theme in DreamWorld.

The Court Of The Dryad Queen

I got to photograph Lauren Cohen, aka Maggie from AMC’s The Walking Dead.  The image also kicked off a sub-series of DreamWorld portraying the various steps along the Hero’s Journey.

Crossing The First Threshold

I also got to photograph Paul Telfer, known for his roles in NCIS, The Vampire Diaries and other roles that require buff-and-handsome men.  He perfectly portrayed the angelic kind of being you would want watching over you while you sleep.

Prayer For The Frail

This year also brought about a new, ongoing collaboration and friendship with actor/model Katie Johnson.  I could write an entire post about how wonderful it’s been to have Katie in my life, both for artistic reasons and personal ones.  I will leave it at two main points; that she is a spectacular model, equally skilled at following specific, minute directions as well as being let loose while I just try and keep up with her.  Her friendship, strength and grace have been a great boon this year, especially during some notable rough patches.  Thank you, Katie 🙂

Perennial Parasol

One of those notable rough patches was learning about the tragic deaths of the 19 Hotshot firemen in Yarnell, Arizona this summer, and that one of them had been a childhood friend of mine.

To The Lost

In a somewhat similar vein, I took my passion for animal rights to a new level after watching the documentary Blackfish.  This also meant that I finally tackled underwater photography, which I’d been quite nervous about trying.

Concrete Cell

I wrote an open letter to Jack Hanna criticizing his continued support of SeaWorld after the Blackfish allegations, which became quite successful and even garnered the attention of celebrities such as British actor Stephen Fry.

Stephen Fry Tweet

Like DreamWorld, the set of Blackfish photos has set in motion a more all-encompassing series addressing animal rights in other areas.  More of that will come in 2014!

A Drop Of Blood

In championing human causes, I got to be a part of the Kickstarter campaign for the documentary Canary In A Coal Mine, in production, about myalgic encephalomyelitis, aka ME, previously known in the United States as Chronic Fatigue Syndrome/CFS.  The Kickstarter was an INCREDIBLE success, and we can look forward to seeing the film in late 2014 or early 2015!  I’m proud to have been a small part of the movement.  I also got to work a little more on my series on living with ME with the help of model/friend Aly Darling.

Martyrs To A Name

I visited a sheep farm to take photos of lambs and goats along with friends Katie and Brooke Shaden, to create a very personal portrait of my grandmother.  This particular lamb was appropriately named Too Cute 🙂

The Shepherdess

I had the pleasure of being interviewed on The Candid Frame, The Altadena Blog, and having some of my photos appear in the self-portrait how-to book, Shooting Yourself, by Haje Jan Kamps.

I “celebrated” my 5-year anniversary with ME.  I’ve tried many new therapies this year to combat the ME, but with the exception of ART massage, it has gotten slowly worse and finally forced me to quit my day job.  In some ways this is a good thing, as my day job was doing my body no good at all, and it also means now I can concentrate fulltime on art.  But it’s also a bit frightening; will the ME get a little worse every year?  Will it level off now that I’m not pushing it trying to hold down a job?  There are many unknowns, which can be worse than knowing something bad will happen.  I try and keep a good attitude about things, but it’s also no good trying to simply ignore your fears.  They won’t go away, they’ll simply grow in the dark.

Vanity’s Murder

This TED Talk sums up my fears, hopes and trials beautifully, and I would recommend it to anyone and everyone, especially any who struggle with depression.

I am still mourning Richard Harrow’s death (this was my light-hearted way of dealing with it) and I’m working on a photo to help work through those feelings.

On a happier note, I got to save a litter of opossum babies and was deeply moved by a beautiful new book.

But perhaps very best of all was getting to photograph author Peter S. Beagle, of The Last Unicorn fame, and bring him into DreamWorld as its King.  It was such a tremendous amount of work, but that just makes the resulting photos that much more meaningful.

Beloved Of The Crown

A year ago, I never would have thought I’d find myself not only merely talking to Peter, but actually interacting with him, making a costume for him, and casting him as one of the most important characters of DreamWorld.

Aerie

If that all happened in 2013, what will 2014 bring?  I am very excited to find out!

Here’s to a great new year!

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Canary In A Coal Mine

I was contacted recently by a lovely woman named Jennifer Brea, who told me about the documentary she was making.  A documentary called Canary In A Coal Mine, which is all about ME.  She was getting ready to launch a Kickstarter to fund the project, and asked if I would be willing to donate printing rights as part of the rewards offered.  Of course I said yes 🙂

The campaign only began four days ago, and they are already almost to their base goal of $50,000.  In FOUR DAYS!  Clearly there are a lot of other people who want to see this documentary being made just as much as I do!  If they surpass their initial goal, it will only make the film better and better, so please do consider donating to their very, very worthy cause.  And you can get prints of mine as part of your reward for doing your good deed!

The series of prints in an special run on pearl paper, which gives them all a delicate, magical sheen.  I’d been toying with the idea of pearl paper for some time, and this seemed like the perfect setting to break them out, to make the reward prints even better!

Please visit the Canary In A Coal Mine page, spread the word, and donate whatever is possible for you!  I am really proud to be able to help this project in whatever way I can… it’s going to do so much good for so many who are suffering.  Check out their very moving preview below, and thank you to everyone who has or will contribute to it!

 

 

Martyrs To A Name – a semi self portrait with Aly Darling, about the harm caused when the US officially changed the name of our disease from “myalgic encephalomyelitis” to “Chronic Fatigue Syndrome.”

 

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