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Posts Tagged ‘awareness’

I may have mentioned before that I often have the TV on while I’m editing.  It has to be the right kind of show; something I can mostly listen to and just glance at periodically, it has to be interesting without being too engaging.  I end up watching a lot of documentaries, nature, science and history shows.  I also catch a lot of shows about the paranormal; I love stretching my imagination entertaining the ideas they present whether or not I think they might actually be true.  Often these shows have a benefit beyond simply enhancing my editing time; I learn new things, I expose myself to new ideas.  And sometimes I learn about problems in the world and I want to do something to try and help fix whatever is wrong.

Details from today's images

Details from today’s images

I’ve known for some time about the terrible future the wild lions in Africa are facing.  Poaching and habitat loss have killed off about 80% of their population in the last 20 years.  Sadly, the traits humans find most beautiful about lions are also the things that make them genetically stronger, which means not only are people driving lions to the edge of extinction, but the lions which are left are weaker and less able to survive.

There are approximately 20,000 wild lions left in the world now.  This is a drop in the bucket from 450,000 about 30 years ago.  If nothing changes, lions could become extinct within the next decade.

Can you imagine a world without lions?  The fragile ecosystem which would be thrown into chaos by their loss?  A world where children would grow up never seeing the majestic animals?  Where lions would seem as unreal to them as dinosaurs?  Telling your child that yes, these animals all once roamed the land, but now they are gone forever.

And it is because of humans that lions are teetering on the edge of this chasm.

If people are the cause of their destruction, we have a moral obligation to try and save them.  As my close, personal friend Rustin Cohle would say, we have a debt to pay.

As is my usual first course of action, I decided to address the problem with photography.  As I began building the concept in my head, I realized it would fit in well with DreamWorld.  While most of the land is beautiful and verdant, there are less lush areas and also touches of actual evil.

It was at this time that I came across Travis Weinand.  Travis is a multi-talented transplant from Philadelphia; he models, of course, acts, sings and plays bass in his really great heavy metal band Burden (seriously, I genuinely like their music!  Give it a listen!) illustrates and paints beautiful images, he’s been a tattoo artist and has been competing in the last several seasons of American Ninja Warrior.  Travis has promised to show me how to make my voice sound evil like I’m singing in a metal band and I’m going to show him how to levitate… in a photo at least 🙂  ANW isn’t something I’d seen much of; I quickly discovered it’s really physically demanding; here’s a short video from Travis to impress your socks off:

Travis’s physical strength, size (he’s 6′ 5″, so anybody seeing us walking together must have gotten a chuckle since I am all of 4′ 11″) and blond hair made him feel like a perfect lion-man.  I decided to make a mane headdress, something more symbolic of a mane rather than something that was trying to perfectly replicate what a lion’s mane looked like.  I had some really lovely blue and brown metallic yarn that I’d gotten on sale and wasn’t sure what I was going to do with, which seemed like a good place to start.  Since Travis has brilliantly blue eyes, I decided to work some blue into the mane; this was a metaphoric mane, I decided I could bend the color rules a little.

Various amounts of blue yarn and other colors braided together

Various amounts of blue yarn and other colors braided together

It happened that, of course, I got sick again while I was getting ready for the shoot – I think I’ve told you guys this but apparently my body has decided that it’s going to have a cold every 2-3 weeks until I have sinus surgery to stop its evil plan.  My surgery is November 4th (wish me luck!) and I am so eager to have it done with.  I’m really looking forward to a time when I can go more than a few weeks without getting sick on top of already being chronically sick.

That has, of course, been very draining, but knitting is one of those activities that you can do (if you’re making up your own pattern anyway) without engaging very much of your brain.  It’s also quite soothing, the repetitive motions over and over again, and once I got through the really feverish first couple days of the cold it was a relief to have something I could work on and feel a little bit productive about.  So a lot of braiding and arm-knitting happened while I was well enough to be bored but not well enough to do much of anything else.  Above, you see the braided loops I made with varying amounts of a brighter blue yarn worked into the rest.

The under-mane

The under-mane, loops attached

Lion’s manes are typically darker close to the skin with the hair lightening as it gets longer.  I made the “under-mane” from the original blue and brown yard that had started the whole idea, arm-knitting a general idea of the shape I wanted.  I hand-tacked some of the braided pieces around the bottom to hang down decoratively.

The... main... mane

The… main… mane

The, uh, main mane was also arm-knitted, into a similar shape, but fuller and more expanded toward the bottom.  I love this brand of yarn.  I want to arm-knit everything right now.  It has such a beautifully organic look when it’s finished, even if you’re making it up as you go!

Ruffs

Ruffs

Lion manes are often majestically full right over the center of their chests, so I quickly knit up a couple filler-pieces to give extra fullness to Travis’ mane.  You’ll notice that one is a little bigger than the other.  The official reason is because it’s natural for there to be a slight asymmetry to any kind of animal markings or fur.  The real reason is because I’d run out of yarn and didn’t have money to go buy another skein.  Plus, I didn’t think it would really show in the final images, so I didn’t worry about it too much.

The beginning of a mock-up

The beginning of a mock-up

I’m including this photo because for one, Aly gave me the unicorn-on-a-stick toy so I wanted her to see it is being used and loved, and also because it just really looks ridiculous 🙂  I needed to build up a shape that was going to let me see how the mane would actually be hanging and my regular foam head wouldn’t nearly do the job.  Not only because it’s far too short and becomes unstable if I pile it high on a lot of other objects (I know this from experience) but I needed the mane to spread out so I could really see it.  So this is the unicorn-on-a-stick sandwiched between the end of my bed and the blue dresser at the end of my bed, wrapped up with a very fluffy pink bathrobe which is so long that I use it as a blanket.  In the next photo you’ll see another bathrobe draped over the unicorn’s head to give it more a human-head shape.  There’s a method to all the madness.

And if anyone is wondering, the cardboard box is there for the cats (mostly Maynard) to lay in and the big pile in the background is my Costume/Fabric/Backdrop Pile.  I’m working on a better way to store it all.  There are only so many hours in a day.

First draping

First draping

I’d been planning to braid the mane into Travis’ actual hair, which is cut in a very cool undercut style which makes me think of Jimmy from Boardwalk Empire.  I seem to be leaving a hole in the middle of the mane; that’s on purpose to allow for Travis’ hair.  You can see the under-mane some and I’d started adding extra braided bits which just hung down.

Finsihed!

Finished!

And here it is all done!  Braided loops, hanging braids, front ruffs; it’s all there.  It’s probably hard to picture how it will eventually look, but don’t worry, you’ll see very soon 🙂

I had come across some boulders in one of my walks (my doctor’s suggestion of a safe exercise for me right now, which makes me sad when I think about all the yoga, Pilates and ballet I used to do.  I like to do the walks in nature since that makes it much more interesting and enjoyable).

The plants around it, which had been brilliantly green in spring were now brown and dying, so it felt like the perfect setting for my Last Lion, as I am calling this new DreamWorld character.

I imagine that the Last Lion had a vast kingdom once where his people thrived.  During the Yellow King’s grab for power, his people and land suffered greatly when they stood up against the Yellow King.  They are fighters.  And though the Yellow King is now banished, he did real harm to the land and its people before he left.

They are fighters.  They have been greatly wounded and they could vanish forever and be a mere memory in DreamWorld as the lions could be in our world… but I think they’ll prevail.  They have not been beaten yet.

And if you would like to help our world’s lions, look into the Big Cat Initiative.  They have a really solid plan of how to get the lions back on their feet while still keeping the farmers and cattle in the region safe, promoting harmony between them.  Another very quick, simple yet effective way is to add your name to any or all of the petitions below, all working toward protecting lions from extinction:

http://www.change.org/p/save-african-lions-from-extinction-by-listing-them-as-an-endangered-species

http://www.ifaw.org/united-states/node/92726/

http://www.thepetitionsite.com/1/save-lions-from-extinction/

Harmony between man and nature.  It’s such a common theme in DreamWorld, and one we need more of in this world.

Please enjoy the Last Lion images below and consider signing a couple petitions and joining the Big Cat Initiative!

Lost Pride

Lost Pride © Sarah Allegra

Lost Pride detail © Sarah Allegra

Lost Pride detail © Sarah Allegra

Lost Pride detail © Sarah Allegra

Lost Pride detail © Sarah Allegra

 

Dying Trophies © Sarah Allegra

Dying Trophies © Sarah Allegra

 

Dying Trophies detail © Sarah Allegra

Dying Trophies detail © Sarah Allegra

 

You can look forward to seeing more of Travis soon!  I’m very excited about using his incredible physicality strategically in images; he can do things for real which I’d normally have to rely on Photoshop for.  Should be fun!  Thanks, Travis!  And thanks to all my readers 🙂

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This will be a short post.  I wanted to share with you all a short video I made for the Microbe Discovery Project, a group using crowd-sourced funding to research myalgic encephalomyelitis, otherwise known as ME.  They asked for people to share their stories of ME with them by video or text, so I did just that.   I always wish I could help them in more concrete ways by giving them millions of dollars, but I’ll help with what I can; being open and honest about my experience with ME and making more people aware that they exist and could use some help.

Hope you all enjoyed the video, and please consider donating to the Project if you have the means!

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I had originally planned on saying a little bit more in this post, but over the last couple days I’ve come down with a Serious Mega Cold with accompanying Ear Infection From Hell.  Having my reading/computer glass rest gently on top of my ear is quite painful right now, so I’ll be brief.

black dress 41Click on the poster above for more info.  You can see it sums up the project nicely; we wear black dresses on August 8th in memory of Sophia Mirza, who died from severe ME.  I cheated a little and took my photo a couple days ago (before the Hell Cold came on) but it’s an unusual photo for me.  It’s nearly straight-out-of-camera; all I did was adjust the curves a little.  And I took it while I and my “bed nest” look as much like they normally do as possible.   I did not put on makeup, brush my hair, or tidy up in any way.  I simply inserted myself into my usual surroundings with a black dress on instead of PJs.  I felt strongly that it should reflect actual daily life for me, which is also the daily life of countless others with moderate ME.

So enjoy, pass it around and if you feel so inclined, take your own photos of you in a black dress!

 

Little Black Dress - a nearly SOOC self poirtrait

Little Black Dress – a nearly SOOC self poirtrait

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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

The Clouds Will Lift - detail

The Clouds Will Lift – detail

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

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

It’s been an emotional week for me; not surprising since ME is something I deal with firsthand.  Since we’ve all walked through the more difficult parts of this disease, let’s take a break with some levity and fun!

 

From constantfuckingshit.wordpress.com

From idelhearts.com

This actually does happen to me. From invisibleillnessweek.com

 

From memgenerator.com

From icanhascheezburger.com

And lastly, one poignant one:

From PostSecret.com

Now go tweet some facts so you can win a print!! 🙂

 

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

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

The Blue Ribbon

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

Ready to tweet?  Use any of the following!

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

*****

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

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

*****

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

*****

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

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

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

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

Spoon Theory - a self portrait

Spoon Theory – a self portrait

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

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

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

In Between Awake And Asleep - a self portrait

In Between Awake And Asleep – a self portrait

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

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

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

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

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

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

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

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

Hey, CDC, change our fucking name already.

Exoskeletonation - a self portrait

Exoskeletonation – a self portrait

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

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

The Blue Ribbon

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

Ready to tweet?  Use any of the following!

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

*****

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

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

*****

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

*****

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

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

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

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

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

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

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

Martyrs To A Name - models myself and Aly Darling

Martyrs To A Name – models myself and Aly Darling

*****

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

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

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

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

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

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

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

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

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

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

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

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

*****

Breakable - a self portrait

Breakable – a self portrait

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

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

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

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

The Blue Ribbon

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

Ready to tweet?  Use any of the following!

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

*****

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

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

*****

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

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

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

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

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