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Posts Tagged ‘photograph’

Let me start by saying that I’m sorry I can’t give you more actual details about what’s going on, but I’ve been advised to continue to keep them under wraps.  Those of you who follow me on social media have already heard that I’m going through a difficult time right now.  What I can tell you is that I am about to do something on the 14th which is absolutely terrifying to me and has incredible, life-altering implications.  For me, Geoff and the fur-kids.  And while I have lots of people (like all you dear, lovely folks reading this) who are loving and supporting me, it’s all going to come down to the words I speak and actions I take on the 14th.  I will be alone at the critical moment; the pressure feels crushing.

I feel like Louis Zamperini in the POW camp holding his wooden beam.  I feel like Aerin facing the giant dragon Mar.  I feel like the unicorn standing up to the Red Bull.  I feel like one of Leonidas’ 300.  Frodo off to Mordor.  Rosie and Pernicia.  Lissar and her father.  You get the idea.

One small, anxious girl going up against something far, far bigger than she is; ill-equipped for the job.  The higher the pressure, the more my brain feels scattered and forgets important details.  And it’s crucial that I remember everything, no notes allowed.  The outcome of this will have a huge impact on my financial state, which is currently pitiful.  I need this win.

To say this has been stressful would be a huge understatement.  This sincerely feels like one of the single hardest, most frightening thing I have ever had to do.  But there’s no getting around it, I HAVE to do it.  And I will do my best.

The stress is causing giant waves of discord through my body, mind and soul; causing mayhem and destruction.  For weeks now, every night, I either have stress dreams or I dream that I’m dying… the dying ones are the worst because, in my dream, it’s wonderful, beautiful, the most peaceful, joyful thing I’ve ever experienced.  And then I wake up and remember real life and it feels like a glorious gift has been snatched from my hands while the weight of life crushes down upon me again.

Despite numerous antacids of all kinds, I’m having persistent heartburn, often in the middle of the night.  My pain levels are all elevated.  And as you can imagine, my sleep is suffering in quantity and quality.

I’m not writing about this to simply throw myself a pity party.  I am asking for your support.  If you pray, please pray for a quick and overwhelmingly successful outcome.  If you do Reiki, please send as much as you can.  If you light candles, please light one for me.  Please send all the love, good thoughts and energy that you can spare, whatever your system of faith may or may not be.  I will gladly take it all!

I am determined to win this battle.  And while it traditionally takes a while to hear about the exact outcome from the fight, I am equally determined to get an overwhelmingly positive answer, right then and there.  I am visualizing myself being victorious.  As much as I am afraid, I am doing my best to catch myself when I start to go into a spiral of worry over what will happen if I fail.  When I notice those thoughts, I actively change my vision of the future to one that I want.  I don’t need to open myself up to attracting any negative energy!

One thing about all the metaphors I listed a few paragraphs ago; despite the odds, they all succeeded.  Thinking about others who have overcome incredible trials is deeply comforting to me.  If they could do it, I can do it too.

I can say one thing: this is not about a new turn in my health or anything else along those lines.  My health is fairly crappy right now, as is usual, but I have not taken a turn for the worse…  other than the spiked pain, non-stop migraines, constant tension in my whole body, wildly increased anxiety, panic attacks and depression as well as extreme exhaustion brought about by all of this.  It’s stressful to the point where I don’t even want to edit or create many days, which is an almost unheard-of low for me.  But these are clearly responses to the weeks and weeks of stress and worry.  I don’t want you guys to worry that I’m hiding some terrible new diagnosis from you.

I know I will get through this.  And I know that with Geoff, I will deal with the outcome, whatever it is.  But more than that, I know I will win.  I have to.  Knowing that doesn’t take all my fear and anxiety away, but it does give me hope to cling to.

I feel incredibly fragile in every way, but I will battle and I will be victorious.  Still, your prayers, well wishes and love would mean a great deal to me right now.  I can use all the help I can get.

I promise that I will try and let you guys know exactly what’s happening just as soon as I can.  I appreciate that you’re all being very understanding about that and respecting the fact that I simply can’t divulge much right now.

This self portrait felt especially appropriate for this post.  It serves as a reminder and inspiration to me to keep fighting, to get up when I’m knocked down, and most of all, never give up.  Thank you all so very, very much for all your support!  I cannot thank you enough.

With that said, please wish me a miraculous victory as I go into this battle.  Now, let me go find my suit of armor.

We Rise Again - © Sarah Allegra

We Rise Again – © Sarah Allegra

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***Spring Special for pet portraits going on now!!  Read on for details!***

The Lady's Doing © Sarah Allegra - featuring my darling Calantha with me

The Lady’s Doing © Sarah Allegra – featuring my darling Calantha with me

I’m sure you’ve noticed how often I incorporate animals, both pets and wild animals, into my photography.  I do it because I love animals and because their presence in my work gives an extra sense of depth and wonder to my images.

The Court Of The Dryad Queen © Sarah Allegra

The Court Of The Dryad Queen © Sarah Allegra

A surprising and unexpected offshoot of that has been that people started asking me to photograph their pets.  They want to immortalize their furbabies with the same sense of beauty and grandeur I infuse into my fine art photography.  They wanted me to capture their animals like I capture my pets.  It wasn’t something I thought of on my own, but my audience asked for it… and I have really enjoyed it, so I want to extend this idea to everyone!

Where Dreams And Shadows Lie © Sarah Allegra

Where Dreams And Shadows Lie © Sarah Allegra

Having pet parents entrust me with capturing their animal’s own natural beauty is an opportunity I take seriously and treasure.  As someone with two cats and a dog of her own, who are all like my children, I know how deep the animal-human bond can be.

Carried Away By The Wind © Sarah Allegra

Carried Away By The Wind © Sarah Allegra

I also just plain love animals; all animals!  Getting to spend time with them behind my lens is my idea of a good day 🙂

Daisy's Hill © Sarah Allegra

Daisy’s Hill © Sarah Allegra

I’m happy to announce that I am holding a Spring Special on my pet portrait services!  This special will give you a discount on my usual rate starting at $2500, now starting at only $2000!  This investment gives you completely unique, original art of your furbaby and two museum-quality prints which will last a lifetime and more.

sarahallegra.com

Jake © Sarah Allegra

Completely custom art staring your pet and two prints??  It’s an incredible value!

Of Milk And Honey

Of Milk And Honey © Sarah Allegra

Would you like a portrait of your darling?  Or do you want to see your baby featured in my DreamWorld series or another collection?  I’m more than happy to discuss details and concepts (and I offer reduced pricing for animals included in a series)!

Where She Learned About Joy 900

Where She Learned About Joy © Sarah Allegra

Interested in setting up a session?  Email me at sarah@sarahallegra.com!  We can discuss all the different options available!

Where The Brave Shall Live Forever © Sarah Allegra

Where The Brave Shall Live Forever © Sarah Allegra

 

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***Spoilers ahead for anyone who hasn’t seen the first season of Boardwalk Empire!***

Keep reading to see an animated gif showing the whole editing process I used to create this image!  Many thanks to Handy Andy Pandy for imparting his knowledge of gifs upon me!

You guys all know I LOOOOVE me some Boardwalk Empire.  Or, at least, I did, up until last season’s finale.  I’m trying to work up to forgiving the show for its horrible end before the final season starts this fall, but I’ve got a ways to go.

I had to completely put the show out of my mind for a long time but I’ve started dipping my toe back into that intoxicating water.  As I was starting the whole series over again (for the manyth time) a new character caught my eye in a way she hadn’t before: Pearl.

Pearl

Pearl

Played expertly by Emily Meade (currently on The Leftovers, also on HBO), Pearl is a prostitute at The Four Deuces in Chicago, which is where Jimmy retreats into hiding until heat from a botched robbery he and Al Capone attempted dies down.  She and Jimmy hit it off right away and form a quick, if somewhat odd, couple, shyly getting to know each other.

Jimmy_pearl

Jimmy’s ear is hurt after Al fires a gun right next to his head as a joke (seriously, who doesn’t fire dangerous weapons at their friends heads now and then?)  Pearl tries to fix him up and suggests he take opium for the pain; “It’s divine, it really is, for whatever ails you.”  Jimmy turns the offer down and the begin talking about their pasts.

Pearl, it turns out, is from Star Prairie, Wisconsin, a very small town where “Grampa was the first white man born in town, Pa was the first man got sent to state prison and Ma was the first woman run over flat by a car.  So you could say I have a lot to live up to.”

She tells Jimmy of her plan to head west to Hollywood and become an actress as soon as she saves up enough money.  Half-jokingly, she tells Jimmy he can come with her if he wants to, which he agrees to, and you can see that there’s a real affection growing between them.

But we all know, no one on Boardwalk gets to be happy for long.

Shortly after, Pearl finds herself being used as a means of sending Jimmy a message.  She had nothing to do with any of the reasons these men want to hurt Jimmy, she’s just caught in the ugly crossfire… and it costs her her face.  Warning for the squeamish, this is a bit brutal.

 

You have to think that with what little we know of her past and the fact that she’s a prostitute, life hasn’t been especially kind to this poor girl.  Not only are her acting dreams shattered, but even prostitution is taken away from her.  Jimmy feels responsible for her condition and tries to take care of her.  The Four Deuces wants to kick her out as soon as she stops making money, but Jimmy delays them.  Her face is stitched and bandaged and Jimmy spends a lot of time squeezing oranges into juice for her to take her opium in.

Pearl scar

Despite her opium haze, Pearl realizes that her future has been erased.  At one point, she forlornly asks Jimmy who will love her now?  We wonder what this poor girl will do, but she’s quite calm and collected; she seems to have it figured out.  While Jimmy is caring for her, she asks him to tell her a story.

I can’t blame Pearl for feeling that was her only option.  Life had been quite unkind to her.  She deserved much more, but I’m glad that she at least had a few beautiful moments with Jimmy before she left.

But, much as no one on Boardwalk stays happy for long, no one stays unavenged for long either.

Unknown to Liam, the face slasher, Jimmy has just met Richard Harrow, the World War One sharp shooter.  At their first meeting, Richard tells Jimmy the story of how he once stayed three days in a blind, waiting for the single moment when he could kill a German shooter, finally taking him out with one shot below his right eye.  Jimmy has a soft spot for the lonely and lost and accepts Richard readily into his life.  And they concoct a plan.

While Pearl’s death is tragic, it is the catalyst for Jimmy and Richard’s friendship, which continues for the rest of the series.  If Jimmy hadn’t needed someone to help him extract revenge upon Liam, who knows what would have become of their relationship, and who knows how it would have changed Richard’s involvement in the show?  We might have never met the man who would become one of my favorite characters on all of television.

With a new appreciation for Pearl’s character, I felt like creating an image in her memory.  And I have to say, I was very proud of myself for how little time it took me to transform myself into a Pearl-like girl; maybe 15 minutes.  If I had more energy on a daily basis, I would certainly try and bring more of the 20’s style to my daily look!  As things stand, I will have to be content with just dressing myself and either putting my hair in a ponytail or hiding it under a hat.  But maybe some day…  🙂

Geoff was very kind and helped be my human shutter release for these self portraits.  Byron helped by photobombing as often as he could.  All said, this was a quick and easy shoot and editing it was quite a delight.  My friend Robert Cornelius helped me figure out how to add the tears to the photo later, which I’d forgotten to do at the time of the shoot.  Thanks, Robert!

Please enjoy the finished image and the detail shot where you can really see the tears!  Also, HUGE thanks to Andy for showing me how to create the animated gif below!  It’s a great way to show you guys the whole creation of the image in a fun way.  I’m hoping to do more of these now that I’ve got one under my belt!

Tell Me A Happy Story

Tell Me A Happy Story

 

Tell Me A Happy Story - detail

Tell Me A Happy Story – detail

 

Watch the creation of this image from start to finish!

Watch the creation of this image from start to finish!

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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!!***

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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