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Posts Tagged ‘Microbe Discovery Project’

What Else Can I Say About ME?

Here we are at May 12th again.  Another Invisible Illness Day come to bring awareness to all the illnesses and diseases which are impolite enough to leave their sufferers still appearing to be well.  Of course, anyone more than casually acquainted with someone who has fibromyalgia, myalgic encephalomyelitis, chronic fatigue syndrome, complex regional pain disorder, multiple sclerosis, rheumatoid arthritis, Crohn’s disease, Lyme, lupus and many, many more illnesses can attest to how debilitating they can be.  The facade of health they leave intact feels like salt in the wound; a confusion for those untouched by their cruel hand, a silent undermining force with us at every doctor’s appointment, a declaration that we are lying or greatly exaggerating our illness.

What else can I say about ME?  About all the other forgotten, ignored diseases swept under the rug of modern medicine?  Illnesses which embarrass our doctors with their constant reminder that we remain unhealed.  Sicknesses with confusing, confounding symptoms which can morph and change like the whim of a butterfly’s flight.  Maddening maladies which suck away our vitality, our joys, our passions, our lives as completely as any vampire.

I’ve written about ME extensively as it’s been an enormous part of my life for the last eight years.  How I have not had a single day since late May of 2008 that was free of pain or its constant, overwhelming exhaustion.  How it has progressively gotten worse each year.  How the government would like to pretend we invisibly ill don’t exist.  How grotesquely underfunded our research is, giving us the same amount of money for research as hayfever gets and less than 1/4 of what male pattern baldness receives.  You have heard me spout the facts and statistics.  You’ve heard me talk about my personal story and fight with ME.  What else can I say?

I can say this: I am not beaten.  I have not given up.

I am determined to get better.  I am committing myself to be well, even if I have it about through sheer mental will.  I will not give in to ME’s gloomy, hopeless future forecast of progressively worsening every year.  I am not accepting a future of the living death that is ME.

I don’t know exactly how I will get better, but I am going to.  As a sign of my determination, I changed my blog’s tagline for the first time since I started this blog years ago.  “Art, photography, life and why I always feel like shit,” felt perfectly appropriate at the time.  “Art, photography, life and how those are really all the same thing,” is much more appropriate now.  My identity is not Sarah-who-has-ME.  I am just Sarah.

As I wrote about in my last entry, my life has been pleasantly consumed recently by my spirituality.  I have strongly felt how focusing on fighting ME has been feeding it.  So now, I will ignore it as much as possible.  I do not mean that I will forget my body’s current limits, or not honor them.  Listening to my body and what it’s able to do is vital for my current and future wellbeing.  But I’ve realized that I can live within the confines of my case of ME while still not letting it reign in every area of my life, and that feel incredibly freeing.  This is the path I will pursue.

This also does not mean that I will not advocate for ME sufferers.  I still feel very strongly that the only way we will bring about change is by demanding it.  And we can only demand it if we know that it exists in the first place.  But I can also advocate without allowing ME to rule every part of my soul.

As May 12th approached, I wanted to create a new image for my Enchanted Sleep series, which is all about living with ME.  I asked Katie Johnson, frequent model and collaborator as well as dear friend, if she would help me bring some concepts to life and she gladly agreed to help.  Through a variety of factors, I wasn’t able to shoot these images until very recently, which meant I had a very short window to edit one up and release it for Invisible Illness Day, but I got it done!  Ideally, I would be releasing the whole short series we shot, but I am content with having just one to show you and help illustrate life with ME.  With that, please let me present my latest image to you, Living With The Tombstones.

Living With The Tombstones

Living With The Tombstones – © Sarah Allegra. Model: Katie Johnson. An image to help raise awareness about ME/CFS and other “invisible illnesses.”

I probably don’t have to explain the symbolism behind shooting this image in a graveyard.  ME (and many other invisible illnesses) truly can be a living, nightmarish death.  Even if you’re not one of the unfortunate souls cursed with severe ME, where any touch, light or sound cannot be tolerated, you die every day to the dreams and hopes you had when you were healthy.  You might discover new passions to pursue within ME’s confines, but do you ever truly forget what’s been taken from you?  If you do, I am not there yet.

I took the name “invisible illness” and interpreted it quite literally, editing out any part of Katie’s body which showed outside her long, princess-like dress.  And the mirrored mask felt like the perfect touch.  When people look at us, they rarely see us; they see their projections of who we are.  Often what they see says far more about them than us.  Some will look at me and, because I can occasionally manage to put on clothes, have Geoff drive and go with him to the grocery store, refuse to believe there could be anything physically wrong with me.  They don’t see the toll that those short, simple trips take on me.  They don’t know that grocery shopping is my ENTIRE plan for that day, probably several days.  How the lights and noise and bustle inside the stores give me migraines, panic attacks and leave me in bed for the rest of the weekend.  They don’t see the weight of my illness on Geoff and my family.  How if I see friends, they always have to come to me.  I so often feel like a dead-weight wife, daughter and friend.  The times I’m overwhelmed by the ME and can’t decide between crying and being too tired to cry.  How many pills I take every day to try and make it to the next day and not be consumed by the constant pain I’m in.  They just see a fairly normal-looking girl.

I can’t blame other people for not knowing that I’m sick.  I don’t display the characteristic signals of someone who is unwell, so of course people assume I’m healthy.  But we need to get to a place where I could tell a stranger that I have ME and they might know what I’m talking about.  That if someone else said they have MS or Crohn’s or fibro, that stranger would have heard of those illnesses.  That the stranger would have at least a basic idea of our struggle and the dire need for change, for research, for treatments, cures and basic respect.

We can get there.  We will.  One May 12th at a time.

Want to do more?  I can help you with that!

I’d like to thank everyone in my life, online and off, who has supported me during these trying past eight years.  Especially Geoff, who I’d only been dating for a month when I became ill.  Lesser men would have run from what he had to face, but he’s stuck with me, no matter how bad things get.  And I’d also like to thank everyone for the extremely warm and receptive response you all had to my previous blog post.  Your kind words and love and support are greatly appreciated, now and always! ❤

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I think it’s fair to say that 2014 has been something of a tumultuous year.  A lot of very good things happened!  And a lot of rather shitty things have happened to.  Let’s touch on the bad first and get that out of the way.

Reuniting With The Stars - detail © Sarah Allegra

Reuniting With The Stars – detail © Sarah Allegra; read on for the full image!

There was a heavy dose of bad this year.  Some of this has been discussed on the blog; three months of colds, sinus surgery, sinus surgery having dramatic and frightening complications, etc.  A lot of it has not been discussed on the blog, however; this does not feel like the proper forum for a lot of the more personal matters, especially ones which involve people other than myself.

The Oracle  - © Sarah Allegra

The Oracle – © Sarah Allegra

Geoff and I have to move.  We are really, really, really not happy about this.  I’m not going to discus the reasons for the move here, except to say that no one did anything wrong.  We always paid our rent, etc.  This is a heartbreaking blow; our neighbors have become like true family to us.  And while we won’t live too far apart after we all move to our new homes, it will never be the same as when we all lived together on the Compound, as we called it.

We Rise Again - © Sarah Allegra

We Rise Again – © Sarah Allegra

When my first surgery complication began and I started bleeding profusely from my nose to the extent that I was truly concerned that I might need an ambulance, our neighbor John came rushing home to make sure I was ok until Geoff could get there.  Once John and I decided an ambulance wasn’t needed, he sat on the floor with me and kept me calm and distracted.

Sleight Of Hand © Sarah Allegra

Sleight Of Hand © Sarah Allegra, featuring my neighbor, John

When I found myself suddenly clutching a whole litter of baby opossums and in charge of their safety, Donna came to the rescue and helped me keep them safe.  (They were eventually taken to a no-kill shelter which would rehabilitate them then release them into the wild when they were old enough.)  These are not your average people.  When we all found out that we’d no longer be living together, everyone cried openly.

One of the baby opossums

One of the baby opossums

And good heavens, it’s been so good for Calantha to be there!  Having a “pack” next door which she can come and go from as she pleases helped her put on a needed five pounds, which she’s maintained the whole time we’ve been here.  Basically, absolutely everyone is extremely unhappy about this for a lot of reasons, but there’s nothing we can do to stop it.

Calantha, modeling the Lady Death bonnet

Calantha, modeling the Lady Death bonnet

And of course I’ve been able to do a LOT of shooting there!  There are SO MANY trees; it’s very easy to make the background look like a forest if you just frame around the tell-tale signs of human habitation.  When you’re dealing with ME, being able to do an entire shoot without leaving your yard, or even getting out of your PJs if you want, can be an incredible boon.

This has also been an extremely tight year financially for us (which a move isn’t going to help).  Again, I shouldn’t go into exact details here, but a large part of our income vanished early this year and we’ve been trying to stanch the metaphoric bleeding ever since.

The Eye Of The Storm © Sarah Allegra

The Eye Of The Storm © Sarah Allegra

Those are the biggest highlights of the bad, of the things I feel I can talk about here.  It’s been a really difficult year and there have been many times when I’ve dissolved into tears over one more bad thing happening.  The world has felt completely against us most of the year, no matter what we’re planning or how noble it might be, which of course feels terribly unfair.  I’m holding out hope that this is all happening for a reason and that things will change soon.  Some days that’s a very difficult hope to hold on to.  I’ll talk a little more about this when I discuss this year’s new image.

Let’s move on to happier topics for now.  Let’s talk about some of the good things that happened this last year!

Inside Looking Out © Sarah Allegra

Inside Looking Out © Sarah Allegra

I was able to promote a lot of awareness about myalgic encephalomyalitis, or ME, with images (which go in my Enchanted Sleep series), interviews, articles, videos and blog entries.  During ME Awareness week, I wrote a blog entry for each day of the week and held a print giveaway for those who helped spread awareness about it.  The Microbe Discovery Project asked for people to share their ME stories, so I recorded a short video for them.

I got to work with some really fantastic new models, Dan Donohue and Travis Weinand.  They were both wonderful; the kind of models who make you want to come up with new concepts just for them.  I’m looking forward to working with both of them again!

Where Black Stars Rise © Sarah Allegra

Where Black Stars Rise © Sarah Allegra

Lost Pride © Sarah Allegra

Lost Pride © Sarah Allegra

 

I lost Dedeker Winston to the FOX show Utopia for a while, and I’m selfishly glad to have her back again 🙂

Water For The Free © Sarah Allegra

Water For The Free © Sarah Allegra

I was really pleased to have been included in quite a few online magazines, blogs and sites.  Photo Focus named me their Photographer of the WeekMillennial Magazine gave me their Self Portrait of the Week spot.

Phlearn, one of my very favorite photography sites, included me in their Weekend Inspiration blog three times during the year, with the images Lady Death, The Shadows Lengthen and The Light Is Winning.

Lady Death © Sarah Allegra

Lady Death © Sarah Allegra

I was able to have brushes with both of my favorite authors, Robin McKinley and Peter S. Beagle.  Robin McKinley was gracious enough to let me write two guest posts for her blog and talk about DreamWorld!  In addition to the ongoing work I’ve been doing with Peter Beagle and Connor Cochran, Peter’s manager/publisher as well as my business manager, they had a special showing of The Last Unicorn in Santa Fe, NM, in a theater George RR Martin has helped restore.  Since George RR Martin was going to be at the screening, Connor asked for some of my prints to hang in the theater, which led to this amazing moment caught on camera between the two beloved authors.  While I have been credited as taking the photo, I was unable to be there in person although I would have LOVED to have been there!

Peter S. Beagle and George RR Martin with unicorn and dire wolf plushies, in front of my prints!

Peter S. Beagle and George RR Martin with unicorn and dire wolf plushies, in front of my prints!

My dear friend and frequent model Katie Johnson started a video series interviewing some of the wonderful photographers she works with called Artist Profile.  Katie was kind enough to start the series interviewing me; you can see the video below!  The series has been really interesting to watch grow and I’m very honored to be a part of it!

Many of you will have heard me talk about how intensely I love Sundance’s original show Rectify.  If you’re new to the party, I LOVE IT.  Go watch it right now.  Both seasons are streaming on Netflix!  For those who have seen it, I gathered my courage, reminded myself that it’s just a show and that these are actors, not the actual characters, and asked Jayson Warner Smith (Wendell on the show) if I could interview him for the blog.  He is actually a lovely and not at all icky, creepy person and kindly sad yes to my interview request!

Tell Me A Happy Story © Sarah Allegra

Tell Me A Happy Story © Sarah Allegra

One of my images was featured on Etsy‘s front page which made me squeal like a little girl.  Luckily I got a screen capture of it before it changed to another treasury!

Etsy's front page 08/08/2014

Etsy’s front page 08/08/2014

After I released Where Earth Meets The Sky, it was requested that I make a video showing how I’d created the image.  Happy to oblige, I made the following video:

Through the kind help of my friend Handy Andy Pandy, I learned how to make animated gifs showing the whole editing process of an image, which I’ve had a lot of fun doing!  I don’t do it for every image just for time reasons, but I think it’s fun to do when I can.  Speaking of Andy, he included me in his recommended artist list both for his part of the Blog Hop, and also on the article he wrote for FStop Lounge titled 3 Photographers You Should Follow.  I blushed and couldn’t have been prouder!

The Blue Ribbon © Sarah Allegra

The Blue Ribbon © Sarah Allegra

I wrote an article for In My Bag titled 5 Reasons Why Creative Self Portraiture Will Help You Become An Epic PhotographerBrooke Shaden was the guest judge that month and felt my article was good enough that she created a third place spot just so my article could be crowned third!  Talk about feeling good!

I’ll try and wrap up this year’s big interviews and features… there was the one Lens People did, a lovely and in-depth interview with Ezra Magazine, and another feature from Dodho Magazine.  The wonderful publication Photography Monthly included one of my self portraits in their October issue from this year.

Where Earth Meets The Sky, model Katie Johnson.  © Sarah Allegra

Where Earth Meets The Sky, model Katie Johnson. © Sarah Allegra

The esteemed Photographer’s Forum chose one of my images, Where Earth Meets The Sky, modeled by Katie Johnson, as a finalist in their 2014 Best of Photography Contest.

Photographer's Forum Best of Photography 2014 book - click here to get your own copy!

Photographer’s Forum Best of Photography 2014 book – click here to get your own copy!

Perhaps one of the best online feature I’ve had so far came this year when BoingBoing ran a feature on my “dreamy, trippy, fantasy photography” after seeing it come up in their Flickr stream!

Singed Wings © Sarah Allegra

Singed Wings © Sarah Allegra – an image to honor the Granite Mountain Hotshots

But I think the feature I’m most proud of came from winning a contest from Good Light! Magazine, hosted by Viewbug.  The contests’ theme was “People and Water.”  My image “A Drop of Blood” was chosen as the winning photo, which of course was just thrilling!  But the prizes were really meaningful to me; first, a feature on View Bug’s blog about how I captured the image.  Next was a really lovely article in Good Light!’s magazine about why the image was chosen:

Good Light Magazine Feature, image © Sarah Allegra

Good Light Magazine Feature, image © Sarah Allegra

And then my very favorite part was watching the short video where you can actually hear from the contest’s judge himself (and hear it in his lovely accent!) about why the winning images were chosen.  It was truly thrilling and embarrassing to hear someone say such nice things about my photograph!  Although I will gently note that the title came first and the image was built around it, not the other way around, but I can certainly see how it could confuse people!

Now, in less photography-related news, Geoff and I got to see the Breaking Bad House.  We also celebrated out 3-year anniversary of being married, which Geoff worked hard to made special despite me being deep in the hell of every-three-week-colds.

Happy anniversary!!!

Happy anniversary!!!

At the advice from Patti Penn, my Reiki teacher, and Geoff, I started making an important mental shift.  I realized that I was looking at my future with ME as written in stone; that it was a pre-determined fate for me to always be sick with it to some degree.  Sure, you hear about some people who go into remission, and even more rarely, are cured, but it was too painful to hope for that.  I tried to not expect that I would always get progressively worse, even though that seemed to be the direction everything was heading in, regardless of whatever diet or lifestyle changes I made.  It was less scary to expect that I’d always be dealing with it to some degree; opening myself up to the idea that I might get better some day was making myself vulnerable to extreme disappointment.

The Fragile Blossom That Opens In The Snow © Sarah Allegra

The Fragile Blossom That Opens In The Snow © Sarah Allegra

But I slowly started realizing that if I expected to always be sick, it would become a self-fulfilling prophecy and I would always be sick.  So as frightening as it might be, I had to start letting the idea of being healthy enter my life.  And it was very scary, very difficult.  Knowing you’re going to be fucked for the rest of your life is something you can adjust to, prepare for and learn to accept.  Having the possibility of healing destroyed the mental plans I’d been preparing myself for, and while it would be a very, very good thing to find myself well, the risk of shattering disappointment was so great, I didn’t want to even entertain the idea.

But I needed to embrace that idea, as terrifying as it might be.  Geoff and Patti both brought up the same idea to me, completely independent from each other and without knowing what I’d been thinking through.  It seemed like a very clear sign.  So I’m taking a deep breath and plunging into the frightening unknown.  The unknown where I could get better some day.  And if I don’t get better, it certainly will be heartbreaking.  But if I don’t allow myself to be vulnerable in this way, then I definitely will not ever get better.

Toward The Boiling Sun © Sarah Allegra

Toward The Boiling Sun © Sarah Allegra

This is one of my big plans for 2015.  Every day, instead of dwelling on what I couldn’t or didn’t do, focus on what I did do.  Even if 99.9% of me feels like complete shit, focus on that .01% where I felt good.  Instead of being frustrated, angry and disappointed with the limitations of my body and mentally say nasty, demoralizing to it, I’ll praise it for the good it did.  I’ll tell it that I know it’s working so hard, that it’s trying its best and that I appreciate all the effort it goes to.  It will take time to make this mental shift, but it’s worth making it.  And I will practice grace with myself, both in what my mental dialogue is and with however long it takes me to heal.  I believe this is the only way I have any hope of getting completely better some day… and no matter how painful that hope can be sometimes, I will commit to it.

Spring's Awakening © Sarah Allegra

Spring’s Awakening © Sarah Allegra

I’ve got a lot I’ll be working on through 2015.  I have big plans for my Glass Walls series, which explores animal rights, along with continuing to build DreamWorld.  A couple burners are being kept busy with Peter Beagle/Conlan-related plans.   And I’ve got numerous projects at various points of completion which I’ll be sharing with you when I can 🙂

The Light Is Winning © Sarah Allegra

The Light Is Winning © Sarah Allegra

I’ve scattered some of my favorite images taken over the past year throughout this post (many of which you can find in my 2015 calendar, on sale here!), but I wanted to leave you with something to inspire you in your own photo creations!  So, in no particular order, here are some of the photographers I recommend you start following right now, if you haven’t already!  There may be some nudity, so just keep that in mind.

Jessica Trinh/Sprinkle Happiness

David Talley

Helen Warner

Chris Arnade

Tim Andrews

Kindra Nikole

Kirsty Mitchell

Brooke Shaden

Robert Cornelius

Handy Andy Pandy

Unsinn Image

And lastly, though she is not a photographer, I highly recommend following Katie Johnson, one of the models I work with most frequently.  She writes blogs for several site which cover a variety of subjects and angles.  If you’re interested in modeling or pole dancing to gain confidence, you’ll find her a kindred spirit.  If you’re a photographer, many of her articles are directed at you and will help you improve your photographer/model relationships.  Plus, she’s just the loveliest person and one I am happy to have in my life and call a friend 🙂

Carried Away By The Wind © Sarah Allegra - a rare image without a human subject

Carried Away By The Wind © Sarah Allegra – a rare image without a human subject

So… this new image.  As I’ve said, it’s really been a pretty rough year, all around.  I watched a movie with my mom recently, on a day she came to visit me after my surgery and make sure I actually laid down all day (something I have trouble doing).

Winter’s Tale ended up being very much a “Sarah movie” as Geoff calls them.  Critics weren’t overly taken with it, and I can see their arguments, but at the end of the day, I still really enjoyed the movie.  It’s hard to make mythic, hopeful movies which are sweet without being cloying or heavy-handed, and I felt that Winter’s Tale balanced itself well.  It’s also very beautiful visually and several of the themes inspired new creations of my own.

Richness In Winter © Sarah Allegra

Richness In Winter © Sarah Allegra

One of the movie’s main points is that “everything happens for a reason” (even the bad things).  This has been such an incredibly trying year; right now I can’t imagine good reasons for the numerous bad things which have hounded Geoff and me this year.  This image is sort of a peace-offering in a way.  A symbol to the universe to say I don’t know what the purpose of these things could have been, but I’m going to trust that there is a reason.  And not just any reason, but a good one.  One I will look back on later and smile, thinking of all the heartache and knowing it had been worth it.

This is the attitude I want to start 2015 off with.  A humble admission that I don’t have all the answers, and never will, but that I am continuing my direction of my life in the hope that tremendous good will be found along this path.  At the moment it feels a bit like a blind faith, but I have decided this is the mindset I need to start off 2015.  I am taking my leap; I hope the universe catches me.

Reuniting With The Stars © Sarah Allegra

Reuniting With The Stars © Sarah Allegra

Thank goodness Byron was around to lend me his opinion while I edited Katie 🙂

Byron giving me his opinion while I edited Katie

Vegan “burger” patties, mashed garlic cauliflower and baked potato, in case you’re curious what I was eating for dinner that night 🙂

 

What are you holding onto for 2015?  What plans are you making?  What hopes do you have?  I’d love to hear them!

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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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***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!

Read Full Post »

***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.    
*****
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!

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!

Read Full Post »

“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

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.

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

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.    

The Blue Ribbon - detail

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!

Read Full Post »

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