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What Else Can I Say About ME?

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

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

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

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

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

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

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

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

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

Living With The Tombstones

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

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

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

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

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

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

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

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Hey guys!  2016 calendars are HERE!!

First, let me quickly update those of you who are regular readers.  You may remember my Preparing For Battle post where I talked about… well, preparing for the big battle I was about to face.  I was sick with stress and worry about it; it was honestly one of THE hardest things I have ever had to do.

But guess what?  I WON!!!  I’m afraid I still can’t give many details about the nature of the fight, but this is a huge, wonderful victory for me and will help make my life a little bit easier.  So thank you VERY much to each and every one of you who said a prayer for me, lit a candle, sent Reiki or good thoughts… they all melded together and produced one hell of a win for me!

Now, with that’s said, let me tell you about my calendars!

Sarah Allegra 2016 Calendar

Sarah Allegra 2016 Calendar

These guys are always a favorite; they’re probably my single best-selling item.  And with good reason!  Red Bubble packs a ton of quality into these babies with thick paper, almost like a heavy cardstock or watercolor paper.  The pages have a subtle sheen without being shiny.  The daily squares are big enough to make notes in.  I still have calendars (both my own and from other artists) from years ago which hold up beautifully, even after years of flipping through them to see the lovely pictures!

Sarah Allegra 2016 Calendar back

Sarah Allegra 2016 Calendar

This also brings something else up: getting this calendar is like buying 12 small prints of my work!  Each year’s images are different, making each year a unique and collectible item.  And if you want to keep the calendar after the year is over, like I do, to enjoy the images whenever you want to pull it out?  That’s fine!  Red Bubble does a great job at printing the images and making them look the way I want them too; this is a solid buy!  You’ll get images which span across my series, from my DreamWorld, Enchanted Sleep, Eternal Storms to self portraits, which feature Katie Johnson, Dedeker Winston, Travis Weinand, Noemi Regalado as well as the beloved author of The Last Unicorn, Peter S. Beagle!

Also, while I was uploading a diptych of Travis for one month of the calendar, I noticed that it made a really awesome pattern for Red Bubble’s leggings.  So get your Travis-printed leggings now!  😀

Travis Leggings

Travis Leggings

All of us independent artists and craftmakers REALLY appreciate your purchases, whether it’s for Small Business Saturday, Cyber Monday, regular holiday shopping, something for yourself, or any other reason you might have!  Please keep shopping small in mind during this holiday season!

And remember if you want to support my art with your purchases, there are always museum-quality prints of my images that you can buy, my online self-discovery-through-photography class Introspective, the Peter S Beagle e-books that have my images on their covers (but buy his other books too!), along with Red Bubble which has a myriad of other items with my images on them.  Everything from stickers to leggings to mugs to laptop/iPhone covers.  There’s really something there for everyone 🙂

A smattering of offerings from my Red Bubble shop

A smattering of offerings from my Red Bubble shop

And don’t forget to check out my friend Jessi’s Etsy shop, The Hopeful Spoon, full of beautiful, hand-made earrings (and other jewelry pieces coming soon!) full of lovely semi-precious stones at very reasonable prices.

One of Jessi’s many offerings!

She also has a section dedicated to raising awareness about different illnesses, which would be perfect for the spoonie in your life!

The Hopeful Spoon

Thanks to everyone for your patronage!  Artists like myself could not survive without help from people like you 🙂

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As so often happens with DreamWorld, the inspiration for this set of images came close to a year ago.

The Pink Mother © Sarah Allegra

The Pink Mother series © Sarah Allegra, model: Dedeker Winston

Last summer, I had recently watched some of the BBC’s episodes of Life, their truly excellent series on all kinds of wildlife.  I was watching it while I edited other images (I rarely watch TV without doing a second activity, unless we’re talking about shows like True Detective, Breaking Bad, Boardwalk Empire, Rectify, etc, which all demand my full attention) but my editing suddenly halted when this segment came on.

I remember backing it up and watching the whole piece again, mesmerized, deeply touched and saddened by such complete, beautiful devotion from any creature to another.  As I watched it a third time, I knew a photo was going to come out of it somehow… it was resonating too deeply with me for anything else to happen.

Now, as to how the medieval elements worked themselves in… I can only give you guesses since I’m not really sure how my brain made the jump myself.  I know that part of it had to do with wanting to give her eight “tentacles” of some kind (which made its way into her hair) and wanting to give her a pouch to carry her eggs in.  For some reason, I thought of a kirtle, a medieval garment which lasted for several centuries.  The kind I was picturing were from, I believe, earlier on in the medieval period and looked more like what we might think of as over-dresses or fancy aprons.

A kirtle from a modern pattern by Burda.

A red kirtle from a modern pattern by Burda.

Researching medieval garments inevitably led to medieval hair… images like these set my brain whirling.

You can see how the braided and wrapped hair, along with beautiful headdresses leaked into my character.

As usual, I wasn’t sure how I was going to do this when I started into it.

I had a longish, dark brown wig which I’d bought very cheaply quite a while ago.  When it arrived, I realized why it had been so cheap; it was already snarled and tangled before I’d even taken it out of the package.  I halfheartedly attempted to work the same wide-tooth comb I use for my own often snarled and tangly hair and quickly realized it was a futile endeavor.  I tossed the wig into the back of the closet and mostly forgot about it.

When this project came up, I remembered it though.  Even though it poofed up like a drying poodle as I combed it, that would work in this case, since I’d be wrapping it up and looping it around.  I spent most of one afternoon just combing it out – not detangling it, mind you; there was never any hope of this wig being tangle-free.  My best hope was to get it to the point where I could separate it into eight segments.  It took all the strength in my arms and they were very unhappy with me for the next few days, but I managed to do it.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

In the meantime, I had discovered arm knitting, which I found I could do without a) using much brain power, b) quickly c) without using much muscle power and d) it had very pretty and interesting results.  The resulting squares and shapes I made from the looping yarn had such a beautiful, organic look, almost like a coral reef or some other under-sea plant/creature, that it felt completely at home with an aquatic-inspired creature.

After the combing session, I put the wig away for a day or two.  I brought it out again after my arms had regained a little strength.  Of course this also meant that it had had a couple days left completely on its own without any outside help to start tangling again, so I spent a little time re-combing it to get it back to a manageable state.  I quickly arm-knit a band of yarn which would form the circlet of my headdress and made sure it would fit.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

Then I divided it into eight more-or-less equal segments and put a hair band around each one to help keep them from getting into too much trouble.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

I put the circlet of yarn back on top of the hair and began crisscrossing the yarn (which was a beautiful, slightly metallic variegated blend of soft pinks, blues,  lavenders and silvers) over the different segments, using liberal help from my glue gun to keep everything in check.  Each segment was attached back up to the main part of the circlet after its crisscrossing was done.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

The two front, face-framing sections of hair were left for last.  I added some looping pieces of yarn between the other segments to make it more headdress-like.  The front segments got crisscrossed with their own lengths of yarn and were then attached to the very back of the circlet, forming two large loops on either side of the face, with hair tentacles hanging underneath them.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

Then was the fun part: beads!  I raided my bead stash, with an eye toward pieces from a very elaborate headdress I’d made which had recently died, spilling beads all over the floor.  I knew there were some really cool pieces which I’d used for it, so I repurposed them again in this piece.  I didn’t want it to be overwhelmingly be-jeweled and sparkly, just enough bling to make the character look a bit important; perhaps some kind of royalty.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

Moving on to her dress, I had a high-necked, sleeveless, pink chiffon dress from Ebay which I’d gotten for little more than a song.  Pink isn’t a color I’m usually drawn to that much, but since the original octopus was pink, my character was going to be pink too.  I kind of eyeballed the general shape of a kirtle from ivory tulle; a lot was going to happen to it and since it was so light and transparent, it didn’t need to be perfectly symmetrical.

I free-styled a yoke for the kirtle with more arm knitting and added some cap sleeves (which are only visible in some of the images unfortunately).  One thing I was finding with the arm knitting was that is is EXTREMELY forgiving.  Arm you within an atom bomb’s range of what you were going for?  Then it will probably work!

To unify the costume and also enhance the organic, oceanic feel, I arm knitted a piece for the bottom of the kirtle, basically a large triangle, and two smaller, upside-down triangles for either side of the egg pouch.  I left several yarn strings loose from the pouch triangles which would be used to tie the kirtle behind the back of the dress, just like a regular apron.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

The eggs were leftover from a shoot I did with Paul Telfer as the Sleeper’s Sentinel.  I’d had to buy a dozen of the super-large plastic eggs so I had PLENTY to use for other shoots!  I kept these fairly simple since there would be a lot going on visually in the images; I started with spray-painting a base coat of a semi-metallic light gold color and added flecks of bronze-black to make them look more like real eggs.  Repeat until they look right.  I knew I’d only need five or six eggs, since that was as many as would fit in the pouch I’d made so I didn’t waste any time painting extra eggs.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

I did do one thing to just one egg though…  I found a nail and a hammer and while the egg was still in two pieces, I hammered a hole through from the inside out.  Some sharp knives, pliers and more hammering later, I’d created what looked like a fracture in the egg from a chick inside starting to hatch.  Eggs = done!

I’d had my faithful model Dedeker Winston in mind for this character the whole time.  I usually cast characters in the same way I create them, just by what “feels right.”  I had not consciously remembered it, but it turned out there was a really wonderful real-world reason to have Dedeker play the octopus-mother caring for her eggs.  Dedeker has been an egg donor many times to couples who are unable to have children on their own.  In fact, one family has two children, both from Dedeker’s eggs, and they just requested a third!  It’s very unusual for a family to have so many children from the same donor, but I think it’s really lovely that all of their children will be linked in this extra way.  And clearly Dedeker produces really fantastic babies!  🙂  Once I remembered that, it felt truly serendipitous that we were shooting this character together.

I knew that my wig was several shades darker than Dedeker’s hair and I had a couple thoughts on how to deal with it.  I knew she had a dark brown wig of her own which we could layer under mine, or we could totally cover all of her hair with a wig cap.  In the end though, she simply twirled her hair into a low bun, I set the wig on top of her head and since there was so much going on with the hair, it looked completely natural and blended right in.  If you looked closely, you could see that some of the hairs on her forehead were a bit lighter than the rest of her head, but I matched them up in about 30 seconds in Photoshop.  Sometimes the simplest method is the best!

We set out on a morning last summer to capture these shots of the character I’ve dubbed the Pink Mother.  We got started early and the sun was already blazing; it promised to be a miserably hot day but at the moment it was still pleasant.  I started shooting Dedeker in a dryer, dustier, yellower scene and led her along a path which gradually got greener and lusher, mirroring the octopus’ journey to find the perfect environment for her eggs to be born into.  The color pallet moved from warm and vivid to cool and less saturated, especially in regards to the Pink Mother herself.  As she nears death, the paler she becomes until the last shot, where she is very white.

She sacrificed everything she had for her eggs.  She loved them, cared for them, caressed them.  She journeyed over countless miles to find a safe, green place for them to be born.  Though it cost her everything, she never hesitated.  And, it seems, her journey was worth it.  The cracks in the eggs prove her right.  They were brought forth from the deepest love there is, and that can only be the best start to these new beings.

So thank you to Dedeker for being my medieval octopus mother and letting me share your story about your own eggs!  And thank you for trusting my vision even if it seemed questionable at the time 😉  You were the perfect, purest-loving mother to those babies!

And now enjoy the full images, some detail shots and behind-the-scenes captures!

A Journey Into Strange Lands © Sarah Allegra

A Journey Into Strange Lands © Sarah Allegra

A Journey Into Strange Lands © Sarah Allegra - detail

A Journey Into Strange Lands © Sarah Allegra – detail

A Journey Into Strange Lands © Sarah Allegra - detail

A Journey Into Strange Lands © Sarah Allegra – detail

A Journey Into Strange Lands © Sarah Allegra - detail

A Journey Into Strange Lands © Sarah Allegra – detail

 

The Air Of A Quest About Her © Sarah Allegra

The Air Of A Quest About Her © Sarah Allegra

The Air Of A Quest About Her © Sarah Allegra - detail

The Air Of A Quest About Her © Sarah Allegra – detail

The Air Of A Quest About Her © Sarah Allegra - detail

The Air Of A Quest About Her © Sarah Allegra – detail

 

Migration's Imminent End © Sarah Allegra

Migration’s Imminent End © Sarah Allegra

Migration's Imminent End © Sarah Allegra - detail

Migration’s Imminent End © Sarah Allegra – detail

Migration's Imminent End © Sarah Allegra - detail

Migration’s Imminent End © Sarah Allegra – detail

 

Her Last Act Of Devotion © Sarah Allegra

Her Last Act Of Devotion © Sarah Allegra

Her Last Act Of Devotion © Sarah Allegra - detail

Her Last Act Of Devotion © Sarah Allegra – detail

Her Last Act Of Devotion © Sarah Allegra - detail

Her Last Act Of Devotion © Sarah Allegra – detail

Her Last Act Of Devotion © Sarah Allegra - detail

Her Last Act Of Devotion © Sarah Allegra – detail

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

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Perhaps he had traveled.  Now she would, too…  He’d been missing too long for things to be wholly right.  Nothing knew of him in the yard.  Nothing in the house.  All of it forgetting, slowly, slowly, she could feel it, and one could only last so long separated from the essence.

A quest waited in those circumstances, always.

The traveler was almost there.  If this one knew nothing, she would ask the next.  And the next one.  One of them would know…. She stood broadside in the gravel and turned her head and asked her question.

Asked if it had seen her boy.  Her essence.  Her soul.

But if the traveler understood, it showed no sign.

I recently finished reading for the first time The Story of Edgar Sawtelle, which my wonderful neighbor Donna gave me.  I loved it; it’s beautifully written, evocative, expertly tackles some tough story elements and leaves a mark on your heart.  I’m going to talk a bit more about the book, what I thought and how this self portrait fits in, but there will be some small spoilers.  Consider this your warning 🙂

* * * * *

Well now.  Let’s get started!  Edgar Sawtelle is set in a rural, mid-western small town.  The Sawtelles have been breeding dogs for generations, but instead of breeding for typical canine traits they breed for cognitive thought, creating what Edgar’s father likes to call the next dog.

There is a strong, intentional undercurrent of Hamlet woven into the story, which wouldn’t seem to mesh well with a tale about dog breeders, but it comes together beautifully.

The heart of the story is the relationship between Edgar and his closest dog, Almondine.  As a reader, you come to know and love her just as deeply as Edgar does.  Edgar is born mute, and thus often struggles communicating with people.  But with dogs, you don’t need words.  Almondine and Edgar understand each other perfectly.

When, as in Hamlet, Edgar is banished from his home for a time, circumstances prevent him from taking Almondine with him; a problem which bothers him much more than just being banished.  He longs to go back and get her, but he is prevented from it, and he misses her even more than his mother.  But Almondine is a Sawtelle dog.  She sets out to find Edgar herself.

After I’d finished the book and was reading reviews and commentaries online about it, I realized just how closely Edgar’s story mirrors Hamlet’s.  Each main character in Edgar Sawtelle is a counterpart to someone in Hamlet.  Edgar, of course, is Hamlet, his mother Trudy is queen Gertrude, his uncle Claude is Claudius, etc.  And I finally realized that Almondine is Ophelia.

Edgar and Almondine love each other deeply.  They are soulmates, not of a romantic kind, but simply two halves of one whole.  Of course, Ophelia is a tragic figure, and just like her Shakespearean counterpart, when she finally takes matters into her own hands (or paws) she dies because of it.

Yet all is not lost.  Edgar and Almondine reunite, and when she sees him for the first time she says, “You didn’t have to come back.  I would have found you.”  And she would have.  She would have walked to the ends of the earth to find him, and even death couldn’t keep her from accomplishing her goal.  Her strength and tenacity amaze me.  She would never, ever have stopped looking for him.  I find her and their relationship so beautiful and moving, I cried on more than one occasion.

I felt so moved by the characters, I knew I had to do something photographically with it or I’d just burst.  I wanted to portray Almondine, but also nod toward her Ophelia roots.  I chose a dress that has a timeless feel to it, and is a bit more practical; something I’d imagine a dog might choose if they suddenly found themselves a person.  I went minimal on makeup and adornments, except for the clutch of flowers, since there is such a strong tie between them and Ophelia.  I wanted the photo to be about Almondine’s love and strength, so I chose to take a close-up shot and really concentrate on expressing emotion.

The tear was something I’ve been wanting to try for a while.   At some point during one of my crafting sessions, I noticed that the little blogs of hot glue that form while it’s hot and waiting for you to use it looked quite a lot like tears, so then I tried intentionally making a few.  It ended up being quite quick and easy, and looked very natural, even in person.

The colors and editing choices I made are a very slight nod to Darren Aronofsky’s The Fountain, one of my very favorite movies.  Yes, I know, it’s a terribly controversial film which people either loath or adore, but I am firmly in the adoration camp.  It also has themes of love transcending death, and as I edited, I kept seeing flashes of the film in my mind and hearing its music playing, so I finally just went that direction.  Once I did, I realized it fit perfectly and I should have trusted myself on that right away 🙂

A screen capture of Rachel Weisz in The Fountain.

There’s something really special about self portraits.  There’s a level of therapy and catharsis I have not found in any other form of art.  I highly recommend it 🙂  Click on the image to see it larger!

I Will Find You

I Will Find You

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