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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The Incline Village Outbreak

***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

*****

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

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, 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!

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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The 12th of May and a Print Giveaway

“I assess the power of a will by how much resistance, pain, torture it endures and knows how to turn to its advantage.” – Friedrich Nietzsche

 

Vanity’s Murder, a self portrait

 

May 12th is called “Invisible Illness Day.”

You probably don’t know that…and that’s part of the problem.

Years ago, May 12th was chosen to be the international awareness day for chronic immunological and neurological diseases, which include everything from Gulf War Syndrome and Multiple Chemical Sensitivities to fibromyalgia (fibro), Chronic Fatigue Syndrome (CFS) and myalgic encephalomyelitis (ME).  Yet more money is spent each year trying to cure male pattern baldness than these diseases.

I’m all for a luxurious head of hair.  But, diseases like ME are taking lives.

A Fading Girl – model: Brooke Shaden

To be sure, “Invisible Illness Day” rolls off the tongue much more easily than “Myalgic Encephalomyelitis Day.”  But the name highlights one of the sources of great frustration for most of us — we often do not APPEAR outwardly sick, thus many people refuse to believe our illness is real.

Unfortunately, some of those “many people” include doctors, policy makers and insurance companies.

How do we fight an illness with no end, no cure, no treatment, no recognition?  How many people must die before the world pays attention?  How many sufferers must commit suicide from the hopelessness and misery they’re dragged through every day before change comes?  We fight it by bringing awareness of the problem, one person at a time.  Every tweet, Facebook post, blog entry, text and conversation you and I have about ME helps fight it.  Every petition we sign, documentary we watch and donation we give is a punch in ME’s face.  And here’s the latest way I’m balling up my tiny little fists.

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

The Blue Ribbon – detail

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!

Thank you to everyone for reading and participating!

Curious how ME became an invisible disease?  Stay tuned to find out more for Invisible Illness Week!

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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Wind Goddess Headdress

The people spoke, and I have listened.

The Wind Goddess Headdress available on Etsy now!!

Several people requested a headdress like what Katie wears in Where Earth Meets The Sky:

Where Earth Meets The Sky

Where Earth Meets The Sky – Headdress Detail

I made a replica of the headdress and put it in my Etsy shop.  There’s only one at the moment, so if you must have it, grab it quickly, but more will be made if there’s a demand!

Where Earth Meets The Sky Headdress

Since we’re on the subject, I have recently had requests to purchase for several pieces of costume and props.  Sometimes the originals are not for sale, either because I am saving the item for its eventual gallery showing alongside the image it was used in, or because I had to dismantle it and reuse the parts elsewhere.  However, many of these items are things I can recreate, even if the original isn’t for sale!  If there’s anything you see in my images that you would like to have, especially the DreamWorld series since so much of that is hand-made, just let me know!  I’m always happy to answer those kind of questions, so don’t hesitate if there’s something you have your eye on 🙂

Where Earth Meets The Sky Headdress Detail

That also goes for prints, by the way.  It’s not cost- or time-effective to list every single print available in every single size on Etsy, so if there is an image would like a print of, again, just let me know!

Where Earth Meets The Sky Headdress

Is a loved one’s birthday coming up?  Do you want a completely unique look for your wedding?  Is there a costume event coming up, or would you just love to wear it while you’re running errands?

Come and get it!

 

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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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Snow, Wind And Deer

First post of 2014!

How was everyone holiday and new year’s celebration?  Geoff and I had the chance to take a little road trip to see some family, which was really fun!  We got to hit some stops coming and going we’d been wanting to see for a while, so I’ll just get right into it.

First stop was the Arizona Deer Farm!  I visited the deer farm with my family when I was about 4 or 5, and I remember it quite vividly.  I was very excited to realize that not only was the place still around, it was pretty much right on our way!  It’s more of a large petting zoo than a farm per say, and they encourage photographs to be taken.  I have a series coming up which is taking a lot of inspiration from deer, so it was very much a win-win situation for me!  Thanks to Geoff for taking all the photos that have me in them!

There’s a path for people to walk on, and most of the deer mill about freely inside a large enclosure.   They have plenty of places they can go and hang out or take a nap that are well off the path, so they only are interacting with you if they want to.  And since you get a big cup of feed when you go in, many of them want to 🙂

Most of the deer are fallow deer; as you can see, they don’t get terribly large, they come in a variety of beautiful colors, and they retain their fawn-like spots into adulthood.

The price of food: one smooch on the head. This one thought it was a fair trade.

Checking my hair for edibility; sorry, buck.

Sadly, my coat is also not edible.

The males have the most stunning antlers of any deer I’ve seen!  I took lots of photos of this handsome gentleman.

Once we arrived safely in Kansas, we settled in to the cold weather.  They had an unusual amount of snow for this time of year, which was sighed at by all the locals but I rejoiced in.  We met up with Erick Riedell, a friend of Geoff’s since Junior High, who also got ordained and married us, and who is also a photographer.  In addition to being an all-around great guy, he’s a cancer survivor twice over now.  He had volunteered to be a part of DreamWorld while we were back, and I wanted to find a way to honor his battle and triumphs… hopefully I’ll be able to share the result of that shoot soon!

While we were wandering around a snow-covered wood for the shoot, I was enchanted by the fairy-world sparkle the snow gave all the plants.  I snapped this shot, which reminded me of the fairy tale of The 12 Dancing Princesses and the underground world where all the trees and fruit are made of jewels.

Little Jewels

On our way back home we stopped at the Wigwam Motel, the epitome of Route 66 kitsch.  We’d stayed there once before, and while the rooms are humble, they are so fun to stay in!  It looks like very little has changed since it opened in 1950.

A cellphone snap of our wigwam.  Those are my gloves on the car trunk, not a wad of used tissues as it appears.

As we made our way home from Arizona, we stopped at The Roadkill Cafe, another historic Route 66 stop.  They had great food (which was not at all made out of roadkill) along with a lovely hand-drawn sign honoring the fallen Hotshot firemen.  I had an unsettling moment when I saw the sign; my heart sank at the reminder of all the brave souls who were lost that day, but I loved that the cafe was honoring their lives and memories.  Regular readers will remember why the loss was hard for me.

Thank you, Roadkill Cafe, for your very sincere and personal gesture showing your gratitude to the firemen heroes.

So now… on to the first photo of the year!  As much as possible, I feel it’s important to start a year off right with my photos.  Get going on a direction that will determine a positive trajectory.  I wanted my first photo of 2014 to be one I’d look back on proudly.  This photo ended up being quite a bit more work to edit than I’d expected, but I felt waiting a little longer would be worth it.

This concept was actually one I’d shot with Katie at our very first shoot many months ago, but it just didn’t turn out quite like I’d wanted.  The concept was a DreamWorld character; a wind spirit, or perhaps wind goddess would be more appropriate.

I started by making her an art nouveau-inspired headdress.  I remember I’d been looking at one of my books on Alphonse Mucha and had wanted to make a headdress similar to what many of his women are adorned with.

I used my foam head to pin and hot glue sensual, looping ribbons into a headband shape.  The forehead and sides were decorated with masses of little white flowers and small glitter-covered styrofoam balls in a variety of sizes.

It was meant to be worn rather low over the forehead, which almost instantly gave it that art nouveau feel.

After that, I hot glued long strands of ribbon to the headband and dotted them with a few more of the styrofoam balls which would help show the blowing wind, along with making it feel more magical.

The second shoot went much better than the first one did!

Where Earth Meets The Sky

Where Earth Meets The Sky – detail

Katie always plays ethereal goddess-types so easily!  Her acting chops are so important to the kind of photography I do.  We both would like to see this kind of headdress become fashionable so we could just go around wearing them all day, at, say, the grocery store… so how about it?  Would you like a wind goddess headdress of your own to help start a trend?  🙂

Thanks to Katie for her patient modeling and to all my readers!  I hope your year has been off to a great start!

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