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It’s time for all those end-of-the-year blog posts!  I admit, I kind of like this tradition.  It’s a nice way to look back on things from a larger perspective.  And I have a brand new DreamWorld image featuring Travis Weinand for those who want to just scroll to the bottom 🙂

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

* * * * *

2015 was a… challenging year, to say the least.  And it turns out I’m starting it with a fresh, new cold and fever.  It has been the worst year I’ve had, ME-wise, so far.  It didn’t help that the year began with a crunched-for-time move of houses which literally took me several months to recover from.  Medication changes gave me months of terrible headaches and migraines, which also meant that this year was the least photographically productive year I’ve had yet also.  Between feeling terrible physically and not having nearly as much access to my art therapy as I wanted, it was a very depressing, frustrating and emotionally trying year as well.  All said, I’m happy to leave 2015 behind me and have set my intentions to have a much more fulfilling 2016.

I made a short video about my experience living with ME for last year’s May 12th (ME Awareness Day).  I generally really dislike making videos, so you can see that this was important to me 😉

There was some drama in the larger world of ME as well.  The US officially changed its name from the very belittling “Chronic Fatigue Syndrome” to the vague and incredibly widely-defined “Systemic Exertion Intolerance Disease.”  Most patients and advocates were very unhappy about this and there was a big backlash, which the powers-that-be mostly ignored, as is their usual method of dealing with us.  I’m still calling it ME, which is what most of us wanted it to be changed to.

Silenced © Sarah Allegra - model: Travis Weinand

Silenced © Sarah Allegra – model: Travis Weinand

Then the Senate rubbed salt in the wound by proposing they slash ME’s funding to absolutely $0 per year.  The paltry amount we currently get is the same amount given to research hayfever, despite ME being as deadly and serious as congestive heart failure and HIV/AIDS.  I extolled people to write to their representatives in protest of this; we’ll see what comes of it.

Please save this graphic and send it to the email addresses above!

Please save this graphic and send it to the email addresses above!

I got to meet fan-turned-model-turned-friend Noemi Regalado and photograph her for DreamWorld.

Apprenticeship © Sarah Allegra, model Noemi Regalado

Apprenticeship © Sarah Allegra, model Noemi Regalado

I officially started a series dealing with mental health issues; Eternal Storms.  It seeks to help break down the stigma associated with these illnesses and show sufferers how they are not alone.

A Cry From The Darkness © Sarah Allegra - a self portrait

A Cry From The Darkness © Sarah Allegra – a self portrait

One of the first models I ever worked with, Dedeker Winston, who has continued modeling for me over the five years we’ve known each other, despite me forcing her to wake up early, pose laying in cold, slimy, creeks, regularly get naked in forests and once helping me discover what stinging nettles look like when I accidentally had her pose nude in a patch of them, left for an extended time abroad.  She is having a wonderful, life-expanding time and I’m able to keep in touch and follow her journey online and through social media and texts.  I was sad to see her leave, but glad that we’d gotten in as much shooting as we did before she left, such as the Pink Mother for DreamWorld.  Speaking unselfishly though, I’m really happy she had this chance to do so much traveling and is having such an incredible time!  But I won’t be sad when I have the chance to photograph her again 🙂

The Living Sepulcher © Sarah Allegra, model - Dedeker Winston

The Living Sepulcher © Sarah Allegra, model – Dedeker Winston

My dear friend Danica gave me a priceless chance to work with an incredible, stunning, cream-colored Gypsy Vanner stallion named Booger.  As soon as I discovered she was horse-sitting him, I began planning a shoot with Katie Johnson and him together, utilizing him in every way I could think of.  I have a LOT of his shots still on my hard drive waiting to be edited, but I did at least complete one image from that magical shoot!

Safely Through The Shadows © Sarah Allegra, model - Katie Johnson

Safely Through The Shadows © Sarah Allegra, model – Katie Johnson

I tried my hand at a more editorial style, which is fun, but not going to be the main thing I do any time soon.

Wall 8- model: Travis Weinand. © Sarah Allegra

Wall 8- model: Travis Weinand. © Sarah Allegra

Alabaster 1 - model Dedeker Winston. © Sarah Allegra SarahAllegra.com

Alabaster 1 – model Dedeker Winston. © Sarah Allegra
SarahAllegra.com

I was accepted into the online art gallery A Gallery, and also participated in a group show over the summer at the Creative Arts Group.

The summer show at the Creative Arts Group Gallery in Sierra Madre. This is how I want my work to be displayed, finished works alongside actual props and costumes.

The summer show at the Creative Arts Group Gallery in Sierra Madre. This is how I want my work to be displayed, finished works alongside actual props and costumes.

I FINALLY finished editing an image I started in 2013.

A Poisoned Sleep Of Kissless Dreams © Sarah Allegra - model: Katie Johnson

A Poisoned Sleep Of Kissless Dreams © Sarah Allegra – model: Katie Johnson

I was able to attend another screening of The Last Unicorn, which was absolutely delightful!  I dressed up as Amalthea and made a taco purse (get your own here!), which I think was the secret behind me winning the nightly costume contest.  I was also able to introduce my dear friends and ex-neighbors Donna and John to the movie for the first time (though I’d already made them fans of Peter’s writing) and they were appropriately impressed.

Taco purse available on Etsy :)

Taco purse available on Etsy 🙂

At the screening as Amalthea (with purse) and back at home.

At the screening as Amalthea (with purse) and back at home.

Sadly, shortly after this screening it became clear that Peter Beagle is not nearly as well as everyone had thought.  This is leading to a number of problems for him and his manager/publisher Conlan Press, which I’ll leave to them to discuss.  Regardless, it is sad to see him unwell and it makes the conversation I had with him at the screening last January all the more precious.

Speaking of illness, one of my favorite photographers, Ashley Lebedev, let us all know that she has struggled with a chronic illness for a long time.  It was beautiful to see people’s support and desire to help her gather funds for treatment.  I wish her a much better, healthier 2016 also!

The Weight of a Whistle Already Carved, @ Ashley Lebedev

I helped my husband (he helps me SO much with my shooting and projects, I more than owe him!) with a project that he’s been working on for a long time, which ended in his creating the dystopian, sci fi, 8-minute short film A Secret War.  You really should watch it!

My friend Jessi started an Etsy shop which has beautiful jewelry in it!  But it’s not simply pretty, much of it helps raise awareness about various invisible, chronic illnesses, such as ME.  As a spoonie herself, purchasing her jewelry is helping her support herself as well as getting something pretty 🙂

Jessi’s shop, The Hopeful Spoon

I discovered the wonder that is the film Unbroken, which is now one of my go-to stories to tell myself when I need some extra motivation to get through anything difficult.

Speaking of Peter S Beagle, Amazon released an exclusive Kindle offering of 13 of his most beloved titles for the first time in e-editions… and 6 of those titles were released with my images on their covers!  To say I was elated would be a huge understatement.  There may have been joyful tears when I first saw them in my browser window.  🙂

Go buy one of these titles! You'll thank me when you discover how magical Peter's writing is :)

Go buy one of these titles! You’ll thank me when you discover how magical Peter’s writing is 🙂

And, as always, I put out a calendar with a year’s worth of beautiful images to brighten up your walls every day!  Red Bubble does an excellent job at making beautiful, high-quality items and its calendars don’t disappoint.  Feel free to grab your own; I can promise that you’ll love it!

Sarah Allegra 2016 Calendar

Sarah Allegra 2016 Calendar

* * * * *

Since 2015 was so heavy with ME, migraines, frequent colds, injuries, deep ruts of depression and stress in ways I have seldom experienced it, an incredibly huge percentage of my physical energy was devoted to simply existing and not giving up.  It really underscored how precious my time and energy is and how I need to devote it to things that are worthwhile.  No, not just worthwhile, but things which I cannot live life without.  The things are dearest and most deeply important to me.

This has given me a lot to think about as I ponder how I’ll change my management of time and energy in 2016.  I will try and devote myself to not just ideas I like, but the ideas which I think are the best.  The most important.  I simply don’t have time to pursue anything less.  This is helping to bring my artistic goals into much sharper focus.  The dross will be burned away; the leftover gold burnished until it gleams.

I’m also making an effort to set aside more time for self-care activities, like short walks with Calantha or yoga when my body allows, meditation and reading for pleasure.  Few things enrich my life (both my actual and imaginary worlds) as much as reading does and I need to make sure I don’t let that slip away from me by being “too busy” for it.

But of course the most important things are the relationships I have with friends and loved ones.  Those will always be tended to, nurtured and cultivated as best as I can manage!  I am blessed to have many, wonderful friends in my life, online and off, who get me, support me and my art and are incredibly gracious about my health problem.  That’s something I should never forget to be grateful for or take for granted.

* * * * *

Now, as promised, here is my new DreamWorld image!

When I first met model and friend Travis Weinand, I was struck by how truly ethereal he looks.  Not simply in pictures or when in costume, he always looks like he stepped out of a comic book, collection of mythology or possibly Middle Earth.  With a quick stop-off for a dose of Viking and tattoos.  Anyway, I immediately wanted him to have wings.  I wasn’t sure how, but I knew he’d get them before we were done working together.

So at our next shoot, I asked him to sit in front of a dark backdrop and pose angelically.  He made looking strong, gentle, loving and bad-ass all at the same time look effortless.  Editing did take a while since I painted the wings myself and had to figure out exactly how I wanted these “wings made out of light” to look, but it was very worth the effort!

This character lives in DreamWorld, as you would probably guess, a centurion of sorts to DreamWorld’s Queen (whom you have not met yet, but hopefully you will soon).  He leads the Queen’s army, the Glorious Guard, but he’s more than just a devoted servant.  Part bodyguard, part lieutenant, part enforcer, part adviser, he is a dazzling embodiment of good.

The title of this image comes from one of my favorite poems of George Gordon Lord Byron, All For Love.  In it, Byron discusses love being the greatest glory one can receive, far greater than wreaths, trophies or other symbols of glory:

O Fame! if I e’er took delight in thy praises,
‘Twas less for the sake of thy high-sounding phrases,
Than to see the bright eyes of the dear one discover
She thought that I was not unworthy to love her.
 
There chiefly I sought thee, there only I found thee;
Her glance was the best of the rays that surround thee;
When it sparkled o’er aught that was bright in my story,
I knew it was love, and I felt it was glory.

That last line kept repeating and repeating through my head as I edited… thinking about the love he has for his Queen, those he protects and his glorious vestige, so I finally gave in and just used it as the title.

 

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

I Felt It Was Glory, model: Travis Weinand. © Sarah Allegra

 

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

 

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

That’s it!  Everyone have a happy and meaningful 2016!  🙂

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Just a quick entry from me as I enjoy my Christmas Eve with my family and loved ones.  I had a couple new features come out in the past few days, and I always try and post about them here as well as my other social media outlets.  It just seems like the polite thing to do when someone goes to the trouble of talking about my work!

Firstly, we have Slovak Art Magazine.  They ran a lovely feature on my work in their latest issue, #13.

SAM Contests smallThere is some really outstanding artwork in the magazine, so it is well worth looking at on its own and not just to see my work 😉

SAM feature bottom smallSecond, I’m really pleased to say that one of my images won a contest sponsored by Good Light! Magazine.  The theme was People and Water, so I thought one of my underwater images from my Glass Walls series with Katie would fit well.  Apparently they thought so too since they chose it as the winning image!

They wrote a feature about the image which was lovely and full of comments which make me want to blush, but I’m going to share it here anyway.

Good Light Magazine Site Top

Good Light Magazine Site small

And as if that weren’t enough nice things they said, there’s also a short video where the judge talks about why he chose the winning images (and he has a lovely accent as well!)

I’ll just say that the title came first, then the image, not the other way around, but it’s easy to see how you could mistake it!

So no… this is not especially Christmasy, but I have not had a moment to put this together until just now!  And while I have thanked the magazines themselves, I think it’s important to promote it online as much as possible.  It’s just good photography manners.

With that all said, I hope all of you who are celebrating Christmas have an absolutely WONDERFUL one tomorrow!  Make sure you get to sleep early so Santa has time to leave you something nice.  And of course, the most important thing of all about Christmas… I hope it is filled with people and animals you love, that you’re able to express your love to them all and they say so to you as well.

Presents are lovely.  Feasts of good food are something we should be very thankful for.  But the heart of the holiday is sharing love with one another.  I hope you give and receive lots of it 🙂

Merry Christmas!!

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First things first: the light.  Let’s get to the winner of The Blue Ribbon!  Drum roll please…

Congratulations, Brittany D. Perkins!!!  You have won a beautiful, 10″ x 15″ print of  The Blue Ribbon!.  Your print will come on beautiful, shimmering, pearlized, archival paper and will be hand-signed.  Please send an email to me at sarah@sarahallegra.com with your mailing address and I’ll get it to you!

What do you guys think?  Was that fun?  Something we should do again?  Did the tweeting format work for you?  Let me know your thoughts and I can fine-tune my contest process to make it better for everyone!  Don’t forget that my fundraising will continue for the entire month of May, so stock up on your art purchases now while they’ll do the most good!

Now, onto the shadows of this post….

The Exiled King Preview

The Exiled King Preview

You remember how I hinted that DreamWorld‘s first dark character was coming to life?  He has arrived.

I think I was telling you guys about the evolution of this character.  I’ve always had a thing for horns and antlers on people (see my very first self portrait as proof) and wanted to work them into DreamWorld from the beginning.  As with most mythologies, I felt there was room for a Puckish, trickster character, which is what I had in mind when I started constructing this creature.  The beginning of my work on him coincided with the beginning of True Detective, a pure coincidence, but True Detective’s ominous Yellow King bled into my concept, and before I knew it my trickster had transformed beyond a mere Puck or even Loki into the DreamWorld version of The King In Yellow.

DreamWorld is an ever-evolving place, and while this King is the first sinister character to be portrayed, there are other forces at work.  We will meet them eventually.  For now, I think it is enough to know that the King in Yellow has been sent into exile by DreamWorld’s true King for trying to usurp the throne and plunge DreamWorld into darkness.  He has been foiled for now, and is thus known as they Exiled King, though some still whisper of the King in Yellow and restoring him to his rightful, dark glory along with those who seek the same goals… but I don’t worry.  The King is strong and benevolent.  And we haven’t even met the Queen yet, though we will soon.  She also rules for good, and is not to be taken lightly.

Let the whispers and secrets travel where they will.  The King in Yellow has been sent into exile as a merciful punishment, but I doubt a second grab for the throne would be met with such leniency.

Now that you know about the Exiled King, want to see how he came to life?

My initial inspiration for the antlers was the Makhor goat’s horns, such as seen in this stock image:

© Erinpackardphotography | Dreamstime.com

 

Horns are always tricky to build for human heads.  Making them stable but light, keeping them balanced on the head while trying to appear that there’s no supporting structure at all… they’re always a nightmare to make.  And I knew these ones were going to be the largest pair I’d made yet.  As usual, I dove in without a real plan and figured it out as I went.

I started with a regular headband and some strong but light wire, wrapped around itself and twisted generously onto the headband.  I began introducing the twisted shape by wrapping it around my arm a few times.

horns1

I wrapped a thin layer of newspaper over each wire frame, adding a layer of masking tape on top to help it hold its shape and smooth it.

horns 2

Looking very lop-sided at the moment

I initially tried spraying the antlers with spray adhesive to try to help smooth the antlers further, but all it really did was make it tacky, even after it had dried.  I sighed and decided I’d try and use it to my advantage by covering the antlers with a layer of metallic gold tissue paper (which smells really weird, by the way).  I filled in some of the larger dips and gaps with hot glue and added a little more tissue paper, but I knew I’d end up having to do a little smoothing to them in post production.  I don’t remember why now, but I ended up getting these finished just the evening before my morning shoot, so I didn’t have more time to tinker with them and make them absolutely perfect.

horns 4

mantle 1

You can see here the careful support structure I created literally with toothpicks and popsicle sticks broken into smaller strips.  Sometimes the most straight-forward way is the best way 🙂  They’re also reinforced with a little bit of monofilament line to help them not bow away from each other.

mantle 2

With the antlers done, I moved onto the leaf mantle.  I used approximately a billion fake leaves for this which I’d collected over several years and a number of projects.  I still found myself nearly running out by the end and had to ration them carefully.  I concentrated on the leaves around the face first, which also conveniently covered the antler’s headband and support structures.

mantle 4

A full mantle of leaves

vest

I’ve had this one vest in my “costume” supplies for a very long time and I just love it.  It looks very rugged and home-spun and fits a very wide variety of looks and styles.  I’m pretty sure it was made for someone closer to my size than Dan’s, so I quickly added extra length to it by cutting straight through the shoulder seem and building a new shoulder strap with leaves hot glued to each other.  The yard provided a wealth of beautiful acorns to choose from and use as buttons.  And don’t worry, the squirrels still had more to eat than they ever could.

leaf1

Next was the big leaf amulet.  I’d gotten this pack of huge, very realistic leaves probably two years ago and had been holding on to them, waiting for them to become useful.  Now was their time!  This heavy chain was also in my stash for similar reasons, and became a lovely chain for what would be a leaf amulet.

amulet 3

Some smaller, gold-dusted leaves, a large gold key and an amber-colored, leaf-shaped crystal finished it off.

amulet 2

Almost done!

foot 1

Leaf slipper tops

The very last thing I made were “leaf slippers,” for lack of a better word.  They were just several leaves glued together with elastic straps to help keep them on Dan’s feet; super easy!

Leaf slipper bottoms

Leaf slipper bottoms

I also cut up some strips of a golden-brown, rustic-looking cotton to tie around Dan’s sleeves and pant legs, but that would be assembled the day of.  As far as my prep work went, I was done!  I honestly can’t remember exactly how long the whole costume took to make… several days of solid work, no sleep?  Eight weeks?  I have no idea, but it was long.  When I’m deeply involved in a project like this, time melts away for any practical use.

Before I get more into this, let me back up and tell you about Dan Donohue, who so beautifully brought my character to life.   Dan is celebrated actor, best known for his extensive theater work.  He played Scar in Disney’s Broadway version of The Lion King and left for Oregon almost immediately after our shoot to go play Henry the III at the Oregon Shakespeare Festival’s version of Henry the III, as well as the father in their production of A Wrinkle In Time.  You would never believe from meeting him that he does evil and sinister so well; he is truly one of the kindest, most enthusiastic and genuinely lovely people I’ve had the pleasure of working with.  But the moment I told him to be a villain, it all fell away and for a second I had to catch my breath because he so completely embodied The King In Yellow.  Dan is a muse if I’ve ever met one and a pure delight to work with!  He’s also very creative and funny, as I’ll get into more later.

The morning of the shoot came quickly, Dan and I found our location and the entire shoot was easy and felt effortless.  There may have been a bit more effort on Dan’s part trying to keep his antlers and mantle from toppling over if he moved his head too far in any direction, but it seemed that his theater experience really paid off and helped him manage this probably cumbersome bit of costume beautifully.

Antler wrangling

Antler wrangling

Generally when I shoot new DreamWorld characters, I edit one or two images; maybe three if I feel they’re all really compelling, but in this instance I edited five.  This is almost unprecedented.  The only other time I’ve edited more photos from a single concept, with no costume or location changes was for the Katie’s World set.  That says quite a lot about how perfectly Dan was able to become the Exiled King.  But enough talking about them.  You want to see the images, right?

You’ve seen this first one already since I used it to tease the series, but I’m posting it again so the whole set can be seen together as intended.  To set the mood, here are the two quotes which most directly influenced how I took the set, one from Robert W. Chamber’s book The King In Yellow and one from True Detective.

Along the shore the cloud waves break,
The twin suns sink beneath the lake,
The shadows lengthen

In Carcosa.
Strange is the night where black stars rise,
And strange moons circle through the skies
But stranger still is

Lost Carcosa.
Songs that the Hyades shall sing,
Where flap the tatters of the King,
Must die unheard in

Dim Carcosa.
Song of my soul, my voice is dead;
Die thou, unsung, as tears unshed
Shall dry and die in

Lost Carcosa.
–Cassilda’s Song, The King In Yellow by Robert W. Chambers
“Him who eats time.  Him robes; it’s a wind of invisible voices.  Rejoice, death is not the end!  Rejoice, death is not the end!  Rejoice, Carcosa!”
– Miss Delores, True Detective episode 7, After You’ve Gone
The Shadows Lengthen

The Shadows Lengthen

 

The Shadows Lengthen

The Shadows Lengthen – detail

The Shadows Lengthen

The Shadows Lengthen – detail.  Dan’s hand here kills me every time, it’s SO PERFECT.  I never knew a single hand could be so expressive, yet it is.

 

Pliable Reality

Pliable Reality – shot using a home-made “Lensbaby” which was the top of a water bottle

Pliable Reality - detail

Pliable Reality – detail

Pliable Reality - detail

Pliable Reality – detail

Pliable Reality - detail

Pliable Reality – detail

 

Where Black Stars Rise

Where Black Stars Rise

Where Black Stars Rise - detail

Where Black Stars Rise – detail

Where Black Stars Rise - detail

Where Black Stars Rise – detail

Where Black Stars Rise - detail

Where Black Stars Rise – detail

The Tatters Of The King

The Tatters Of The King

The Tatters Of The King - detail

The Tatters Of The King – detail

The Tatters Of The King - detail

The Tatters Of The King – detail

And perhaps my favorite of them all….

His Robe Is A Wind of Invisible Voices

His Robe Is A Wind of Invisible Voices

His Robe Is A Wind of Invisible Voices - detail

His Robe Is A Wind of Invisible Voices – detail

His Robe Is A Wind of Invisible Voices - detail

His Robe Is A Wind of Invisible Voices – detail

His Robe Is A Wind of Invisible Voices - detail

His Robe Is A Wind of Invisible Voices – detail

His Robe Is A Wind of Invisible Voices - detail

His Robe Is A Wind of Invisible Voices – detail

 

Whew, still with me?  I know that was a long post, but I had a lot of photos to cover!

He's not REALLY evil, he just pretends really well!

He’s not REALLY evil, he just pretends really well!

The only sad thing is that we never got to see how well Dan managed his leaf slippers, but trust me, he killed it like everything else.

The only sad thing is that we never got to see how well Dan managed his leaf slippers, but trust me, he killed it like everything else.

To wrap up, I’ll leave you with a couple fun things.  Dan does these really fun recreations of scenes from movies, hunting down the original locations and taking photos!  Dan’s spoof of Anthony Hopkin’s letter to Bryan Cranston about Breaking Bad (read the original letter here).  Doesn’t Dan sound exactly like Anthony Hopkins?  And lastly, if you have a chance to go see him perform at the Oregon Shakespeare Festival, do it!  You won’t be disappointed!

Dan as Richard the III - Copyright Oregon Shakespeare Festival

Dan as Richard the III – Copyright Oregon Shakespeare Festival

Thank you so much to Dan for being the perfect King in Yellow and furthermore being extremely patient as I slowly edited all of these!!  Hopefully we won’t have to wait too long to see the Exiled King’s companions and cohorts!  Dan has been invited back again whenever he returns to California, so he may pop up in more photos; I hope so  🙂

 

Us

 

*****

 

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

 

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Ok, guys!  You have one more day to enter the print giveaway and win your own FREE, archival, shimmery, pearlized print of The Blue Ribbon, so get those entries in!  Entering couldn’t be easier.  Simply tweet one of the ME facts below, making SURE to use the hashtags, and you’re in!  That’s it!

 

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!  Stay tuned!

Thank you to everyone for reading and participating!

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

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

 

From constantfuckingshit.wordpress.com

From idelhearts.com

This actually does happen to me. From invisibleillnessweek.com

 

From memgenerator.com

From icanhascheezburger.com

And lastly, one poignant one:

From PostSecret.com

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

 

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

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

The Blue Ribbon

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

Ready to tweet?  Use any of the following!

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

*****

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

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

*****

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

*****

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

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

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!!***

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!!***

As ME Awareness Week continues, I feel it’s time to share my personal history with this disease.  Catch up on the story with the first and second posts!

Most of you will have heard my own story about ME.  To briefly recap for anyone new to the blog, on May 27th 2008, I came down with what I thought was food poisoning.  It wasn’t fun, but I thought it would surely pass quickly.  It did not.  Everything got worse.  Looking bad, I can see signs of ME showing up as early as my teens, but it was May 27th when it really exploded.

I have not been the same since; I have not had a pain-free day in all that time.  I had three brief, beautiful days at the beginning of 2011.  I was on steroids for an infected cat bite and for those three days, I wasn’t constantly dragged down by the muddy, boggy, wet-wool, bone-deep exhaustion of ME, which I commemorated with a self portrait.  Outside of that, there has been no relief.

3 Good Days

3 Good Days – a self portrait

Though there is much controversy over the subject, and I make no claims to be any kind of expert (except about my own experiences) I believe that ME, CFS and fibro are really all the same thing.  Or, at the very least, they’re all branches of a “mother disease” which we have yet to identify.  Either way, they all seem intrinsically connected.  However, the United State’s intentionally wishy-washy definitions of CFS and fibro have led me to setting their names aside and using ME as much as possible.

ME has excellent, testable, finite guideline, though getting your doctor to agree to those tests is another matter.  ME has the most scientifically sound definition, and it’s the one I connect with most of all, since it is so specificHowever, since almost no one in the United States has heard of ME, including all of my doctors, I tend to use the names interchangeably depending on whom I’m talking to, to make it easiest for them to understand.

The hallmarks of ME include unreasonable fatigue that is disproportionate to how much you’ve exerted yourself.  For instance, I might go to the grocery store and come home feeling like a healthy person would after running a marathon.  You experience post-exertional malaise, typically worst 24 to 48 hours after said exertion.  Muscle pain is key.  Headaches and migraines common.  Neurological symptoms begin, often in the form of tripping, falling, sudden “brain fog” where it seems like your brain has turned into oatmeal, the inability to remember words, or even your own name.  Light, sound, scent, noise and touch are all heavily amplified; it’s like the volume in our brains in constantly set to 11.  Every now and then this proves useful, like when I could smell the very faint gas leak at my neighbor’s house that no one else could.  Usually it just means there are more things to avoid which would trigger pain and migraines.  My husband Geoff and I joke that I can smell things only dogs and I can detect, but there’s a truth behind the laughter.

The Fog Rolls In - a self portrait about "brain fog"

The Fog Rolls In – a self portrait about “brain fog”

And, ah yes, pain.  Pain blends into your existence like spilled ink, no matter how you try to resist.  The areas of pain vary from patient to patient, and even from day to day for each patient.  I have a mystery flank pain with no identifiable cause for which I receive nerve-blocking injections a few times a year, including the latest round just this morning.  The recovery period from them is usually brutal, but it’s better than not being able to have it done.  If I clean the toilet too vigorously, my arm and shoulder might ache for a month.  Sometimes longer.  I am also extremely susceptible to every bug that comes around; I cannot get through a cold and flu season unscathed.

There is currently no cure for ME, nor many good ways to even manage the symptoms.  Nor is there a clear idea of what the cause is.  There are good arguments to be made for it having a neurological cause, or it could be an auto-immune disease, something viral, something bacterial, something sent by the gods to people who were very naughty as children in previous lives… it’s all up for debate.

Unjust - model, Aly Darling

Unjust – model: Aly Darling

Back to my image, The Blue Ribbon. It’s the latest in my photographic series called Enchanted Sleep, which visually portrays what living with ME is like.

Most illnesses and many causes have their own color ribbons these days; pink for breast cancer, fibro is purple, red for AIDS, etc.  (And yes, certain colors are shared by numerous diseases and causes; purple is also used for lupus and Alzheimer’s along with quite a few others.)  ME’s ribbon is blue.  I photographed this image several months ago during an underwater shoot with Katie.  It took me longer to get to editing it than I had planned, and by the time it was done, it was so close to May 12th, I decided to just wait to release it now.

Katie is my honorary ME-er; she’s quite the opposite of someone with ME, being full of energy and vitality all the time.  But she’s been around me and other friends who do have similar illnesses that she seems to understand our struggle as much as anyone could.  I have great trust in her modeling instincts, so when we shot this, I gave her a long strip of blue ribbon and just told her to do something with it.  What she came up with so clearly encapsulated the physical fight you’re forced to be in every day, I knew it was the perfect visual metaphor.  Thank you, Katie, for taking on our cause and helping me portray it in my images!!

The Blue Ribbon - detail

The Blue Ribbon – detail

To do my part, 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 and second posts this week about ME, and keep an eye out tomorrow for more about this glass mountain!

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 »

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