DreamWorld’s King

**Before I get into the meat of this post, I am happy to announce that I will soon start holding mythic photography workshops!  We’ll go over techniques for drawing the magical and awe-inspiring out of the ordinary.  Email me at sarah@sarahallegra.com if you’re interested and I’ll keep you up to date!**

Closeups of both finished photos.

Oh my… this is one of those posts where I have so much to say I can hardly figure out where to start!

I think pretty much everyone reading this will already be familiar with my DreamWorld series, right?  The series portraying the characters and landscape of the world we visit in our sleep?   I have become quite obsessed with it, even though the photos usually demand so much more preparation and work than other photos do.  There is something incredibly therapeutic and wonderful about imagining an entire world and breathing life into it one photo at a time.

The very first character I imagined for DreamWorld was its queen (who we will meet in the future) and eventually I thought that if there is a queen, there probably should be a King  too.  And while I imagine that the queen is really the one in charge, the King is the ultimate father figure.  Warm, approachable, unfailingly kind and wise, but still powerful and majestic.  It’s a lot to ask of one person, and I mulled over who could play him for a long time.

While I contemplated that, I thought about what the King’s costume should be like.  I wanted it to be book-inspired, both literally and metaphorically.  Carl Jung’s and Joseph Campbell’s writings have had such a big influence on my life, and on this series in particular, I wanted the King to be an homage to them and their works.  So books, paper and writing would be the main themes of the costume… and as usual, I had no idea how I was going to pull it together.

While all that was happening in my head, I learned that Peter S. Beagle would be in town as part of his world-wide “The Last Unicorn” movie screenings tour (which I HIGHLY recommend!).  I suddenly pictured Peter as the King, and once I’d done that, I couldn’t imagine anyone else doing it.  He was absolutely perfect.  He is the King.  Every single time I’ve met him, he has exuded such warmth, wisdom and kindness that I wished I could adopt him as an uncle.  And given my recent partnership with his publisher, Conlan Press, I thought it would be the mutually beneficial to everyone.   I’m very happy that Connor, Peter’s publisher and manager, agreed and was able to loan me Peter for a few hours while they were in Los Angeles.

So, casting was settled, but that left me only about three weeks to build every prop and costume I’d be using.  Which was not nearly enough time.  I’d begun working on the King’s magic book before I even got a yes and had already spent over 30 hours just building it.  It was going to be an ugly three weeks, but very, very worth it, so I launched into creation mode.

You really have to see the book in person to understand why it took so long to make. At this stage, it’s just many, many subtle layers of paint.

Peter would be wearing long robes that would transition into paper scrolls at his feet, along with a crown made from folded paper.  His collar and cuffs were lace made from tissue paper, with crinkled paper accents.  A buckle portraying a tree of life would hold the robes closed, and the part I was perhaps most excited about was the collar of paper birds taking flight.  That was the end goal… how I’d get there, let alone in three weeks, I had no idea.  But I started with what I knew, making the tunic under his robe, and the fabric part of the robe itself.

Initial sketches

The tunic and robe themselves were pretty easy, standard pieces of DreamWorld wear, so they came together quickly.  The robe was made mostly from cotton muslin, since it’s inexpensive and takes tea-dying well (which I suspected would be in its future).   The yoke was made from the most beautiful metallic gold jacquard-type fabric (I purchased it as a remnant, so I’m not sure exactly what it is, other than gorgeous).  The first introduction of paper into the robe came by using long sheets of corrugated cardboard in the place of pin-tucked fabric.  I broke a needle on my sewing machine trying to get it on before finally locating my super-heavy-duty-heavier-than-duck-and-denim-together needle, which held up.

The robe with cardboard “pin-tucking.”

I’ve never felt especially adept at sculpting, but I knew I was going to have to do at least some for the King, so I got some silicone clay which could be baked in an oven and a couple molds.  One mold featured different female faces on it, while another had branches, leaves and birds.  Leaves I though I could probably get away with on my own, but with the time I had, I didn’t want to have to try messing with making a beautiful face on my own.  Plus, the molds were on a 40% off sale, so I took it as a sign.  Most of the sculpting ended up on the cover of the book, which became quite symbolic all on its own, incorporating elements of Joseph Campbell, Peter Beagle and myself.

Beginning to sculpt. You can see the shell of the unpainted book in the upper left-hand corner too.

The King’s costume incorporated keys and locks in numerous places, a metaphor for how Peter and Joseph Campbell’s writing had unlocked so much wisdom for me.  Around the large keyhole (obtained from a wonderful architectural salvage yard) I sculpted two pieces which could look like either paths or (bull’s) horns, nods to “The Last Unicorn” and the hero’s journey.  I made my own little cloven-hoof stamp by carving the end of an eraser and covered the “paths” with a smattering of hoof prints.  Between the paths/horns was a woman’s face with long white hair and a horn coming out of her forehead; an obvious reference to “The Last Unicorn,” but also to my own own identification with the story.

For added symbolism and a little more depth, I also crafted two small anatomical hearts, alluding to the “Two Hearts” story Peter wrote as a novella sequel to”The Last Unicorn.”  Though you could never accuse “The Last Unicorn” of being shallow, “Two Hearts” adds such richness and depth to it that I feel it’s really just a continuation of the same story and not two separate ones.

Stamp, hearts, unicorn girl and hoof prints.

After the sculpting and baking came many coats of paint.

Painted pieces, along with a key I ended up not using for this photo (but which will be used eventually).

The keyhole and clay pieces were glued to the book cover and that prop, at least, was done!

At some point during the three weeks I was making all this, I pictured Peter with two ladies in waiting.  At first, I dismissed the idea since I already had more than enough work to do, but, to my annoyance, once I pictured it that way, I knew it would be lacking without them.  Damn.  I sighed and added two more costumes to my to-do list while I emailed frequent models Dedeker, Aly and Katie to see if they were available.  Unfortunately, Aly’s work schedule prevented her from joining us, but I was glad to have Katie and Dedeker along!

Turning my attention back to Peter’s robes, I used more of the corrugated cardboard t make wide cuffs.  I’d found some beautifully-dyed, crinkly paper, a little thicker than tissue paper, but not by much.  I had some in orange and some in purple, and I used the purple paper to edge the cuffs.  The inside of the cuffs was lined with an untold amount of tissue paper, cut to various widths and run through a paper punch on one side to create a look like lace.  I alternated white tissue paper with some beautiful, metallic silver tissue paper.  The white tissue paper went through the punch well, but the silver paper would utterly clog the punch up after 3-4 presses, no matter how few or how many pieces I put through at a time.  I even tried running it through at the same time as some nice, heavy cardstock, but the paper press just laughed at my attempts and clogged again.  In the end, I used less of the silver paper than I had planned, but was left with more of my sanity intact, so I thought it was a fair trade.

Tissue papers, purple crinkle paper and the cuffs coming together.

I used the orange crinkle paper to make a lapel and more of it was used as a belt.  I’d wanted to give the robes a feeling of embroidery, so I used some metallic gold paint to create swirling, organic, art nouveau-like designs on the pin-tucking.

Speaking of the belt, I wanted to have another Campbell reference, so I decided to use one of the most commonly recognized mythology symbols, the tree of life, on the buckle, quite literally bringing everything together.  The backing was made out of clay and painted with several layers of gold, green and bronze paints.  Some pretty green rafia made up the tree itself.  The untwisted ends made very convincing leaves, and the twisted ends made wonderful roots.  In the middle was another keyhole, continuing the motif.

Tree of life buckle above the paper belt.

Around this time, I started wondering how I would turn the robe ends into paper scrolls.  I spent several nights not sleeping while I contemplated it, and eventually came up with the following.  I sewed six long panels of muslin, each about two feet wide, and of varying lengths.  The sides were sewn with wire in them, and I covered both sides of the panels with torn-up paper mache.  The paper mache was made from countless pieces of tissue paper I had tea-dyed from a barely noticeable off-white to a dark cream.  I used the lightest pieces at the top and let it gradually darken toward the bottom.  I washed the panels with layers of thinned-out white glue (many, MANY thanks to my wonderful neighbor Donna for giving me a huge vat of glue!) until they were suitably stiff.  Applying paper, painting and letting them dry between took the better part of a week.  By the time they were done, it was nearly time to shoot and I didn’t know what I’d do if they didn’t work.  I breathlessly tried rolling one of them up… and it stayed.  It looked like paper!  It looked like a scroll!  I was so relieved!

I attached the panels to the end of the robe with some heavy-duty safety pins and hot glue, then added another layer of tea-dyed tissue paper, creating a gradual transition from a little below the belt of the robe with just a touch of paper, all the way to the bottom of the scrolls where it was thick paper.

I’d had a very clear vision of how I wanted the King’s crown to look, formed primarily from folded paper, dotted with keys and old quill nibs, which I found a whole bunch of on Ebay!  While it wasn’t really hard to make, it did take a lot of trial and error.  I am not much for origami, so I ended up just cutting out different shapes and experimenting with what produced the best results.  I used a cream-colored cardstock for this, quite a relief to work with after the filmy, fragile tissue paper.

Trying out different objects as stencils.

The crown ended up being my favorite part of the whole costume.  Geoff kindly took some BTS photos of me working on it.  The medallion in the middle of it was something I found in the jewelry-making section of the craft store, and it added the perfect finishing touch with the purple gem in the middle of it.

Making the crown.

Around this time I realized I also needed to make a staff for the King.  I had actually found such a good stick while I was hiking one day that I brought it home, not even having a plan for it, just knowing it would be good for something, eventually.  I spray painted the stick bronze and gold, and used several thin washes of acrylic paint in green and gold tones on a glass Christmas tree ornament (which I have a large stock of for a future project).  A very, very thin spritz with some dazzlingly-silver spray paint finished off the ornament, which I flipped upside down and anchored to the stick with a big old blob of hot glue.  I had wanted to incorporate some more flowers into the costume anyway, and having a cluster of them under the ornament hid the transition beautifully.  A key under the ornament and flowers finished it off!

Things get a little blurry as I think back on the days right before the shoot, and I honestly don’t remember the exact order of events anymore.  But in the last couple days, I sewed some easy, empire-waisted gray chiffon dresses for the girls, with long, matching chiffon sashes.  The dresses were decorated at the bustline with a fan-shaped piece of folded cardstock, tissue paper lace and flowers.

The big project for the girls, which bled over into the last of the King’s costume, were the paper birds.  Those damn, damn paper birds.  I printed untold sheets of cream and white cardstock with chains of birds (which I’d laid together in Photoshop) which then had to be cut out by hand, one by one.  I was so sick of seeing the pile of papers waiting to be cut out by the time I was done.  Days and days of cutting out birds.  So, so many birds of different sizes, shapes, angles and colors.

Sheets of cardstock with birds cut out, a pile of cut birds, the king’s collar being assembled.

Obviously, many of the birds went to making the King’s bird-and-lace collar, but the majority ended up going to the two maiden’s headdresses and arm pieces.  I loved the symbolism of the birds; they were taking off from Peter’s throat (where words take flight as well), they landed and traveled down the girls’ heads, as they take the stories and information in, then they make their way down the girls’ arms to their hands as they put the lessons they have learned to work.  Just remembering it all gives me a headache, but I really loved how it turned out, even though it was nearly midnight the night before the shoot when I glued the last string of birds together, was finally done and went to bed.

Calantha helped whenever she could.

The morning of the shoot came after not nearly enough sleep, and I knew it was going to be a very long, grueling day, but I was very excited!  Donna and John, my neighbors, had very kindly allowed me to use their dining room to shoot in, which gave me more room to move around.  I started hanging curtains and getting the set constructed while I groggily drank my tea.  Everyone helped me get the set ready, which I was very grateful for; I couldn’t have done it all on my own!  Then my lights decided they didn’t feel like working, and I had to troubleshoot that as it got closer and closer to the time of the shoot… it was quite stressful, but it all came together just in time!

Thank you, Dedeker, for these adorable furbaby pics 🙂  They are a friendly lot!

Connor pulled up and dropped off Peter and his assistant Cat, who was helping them with the tour, and then I had a most surreal moment when Peter Beagle, one of my two very favorite writers, author of “The Last Unicorn,” a story that has profoundly influenced my life, was standing in my living room.  He was just as warm and wonderful as all the other times I’d spoken to him, and he showed excellent taste in admiring Calantha and asking what kind of dog she is.

I caught Connor snuggling Maynard and made him stand there until I got a photo of it.

Peter told me he’d been instructed by Connor to be regal and majestic, which I agreed with, but also highlighted the King’s warmth and kindness.  Peter said, “So I should be regal and majestic, yet warm and approachable?”  I said yes, and he just said, “Got it,” and then he was all that, all at once.  I helped him get into his costume (with the help of Katie, Dedeker and Cat, it was really a several-person task).  I shot a few different setups; since this was not going to be a chance I’d have again, I wanted to cover all my bases.  And everything fit everyone, and it all worked and came together beautifully, and I knew that the last weeks had been more than worth it.  Katie very thoughtfully took some behind-the-scenes photos once her part in the shoot was over, which I’m so happy to have!

Thanks, Katie! 🙂

Mei Mei photobomb

Dedeker and Katie being beautiful.

Cat took this one for us; thanks, Cat!

My imagination hero and me.

After the shoot was over, we all helped Peter out of his costume and then I got to just chat with him and Cat and the girls until Connor got back from the errands he’d been running in preparation for the screening that night.  It was my first time meeting Cat; she was utterly delightful and I was honored to have them lounging in my living room.  Again I was overcome with the surreality of the situation.  Connor got back shortly, and we parted ways for the time being.  We’d all meet up again that night for the screening in Newport Beach.  The shoot was successfully checked on my list!

I have to say, though all my shoots are done on a budget, this was the most expensive one yet.  A lot of the expenses were things like the paper punch and a self-healing cutting mat (for all the damn birds) that I’ll be able to use again.  All in all, I think I spent between $100-$150; an amount that felt absolutely extravagant to me!  The total time I spent on this is really incalculable.  A couple hundred hours on pre-production, but I spent a good six weeks editing it… it’s easy to say that I spent hundreds and hundreds more on post-production.  There were many times I was cursing myself and why couldn’t I just take nice, pretty photos that edit up in an afternoon (not to mention don’t require hundreds of paper birds) but even in those moments I knew it would be worth it… and it was.  🙂

Katie was giving me a ride into Hollywood on her way home, so Geoff and I could meet up and travel in one car, so she helped me dismantle the set.  We got some lunch since we were ravenous after such an exciting morning and she left me with Geoff while she went home for a bit before also heading down to Newport Beach.

I was exhausted, but also completely wound up.  I attempted a nap in Geoff’s office, but it was pretty pointless.  It was going to be a long night though, so I thought I’d better try anyway.  With anxiety over the shoot done, I could now concentrate on being anxious about that evening.  Connor had specifically asked me to come to the Newport Beach showing and bring my portfolio with me so that he could introduce me to Peter’s fans as one of their new featured artists who will be working with them.  Gulp.

Connor under the marquee.

Geoff and I (and Katie, in her own car) battled the traffic from Los Angeles to Newport Beach and made it just in the nick of time.  I really wasn’t sure what “introducing” me meant, so I had lots of possible meanings to be worried about.  I was heartened when I got to the theater and was greeted as long-lost friends by Connor and Cat (Peter was somewhere else) and then entered the theater to find a bunch of my family there, which I was not expecting!  It was so sweet of them all to come out and support me.

There was a great Q&A session before the movie started.  There were raffles, giveaways, and the mayor of Newport Beach showed up to present Peter with a plaque.  It was really quite an event; I would heartily recommend it, of course to any fan, but just to anyone in general 🙂

The mayor giving Peter his plaque; thanks to my grandmother for taking this photo!

Just before the show started, Connor had some of the vendors who had come with their Unicorn wares stand up and pointed them out, and at the very end of all that, he had me stand up and introduced me to everyone, saying I’d be there after the show with my art.  Whew.  One hurdle down.

Then we all got to watch the movie itself in a theater, which no fans my age and younger have ever been able to do.  It was pretty amazing.  I cried, and not just because of what an emotional day I was having.  Seriously, if you get the chance to see it, GO.

After the movie, Peter was around to sign books, take photos with people and talk to them like they’re actual human beings and not just cattle being herded through a chute.  Cat and Connor set me up behind one of the tables where the wares were spread out, and I set out my portfolio and my cards.  Geoff and Katie both really stepped up and stayed the entire night with me.  It was so good having them both there with me since I’m so intensely uncomfortable a) in crowds, b) around strangers, and c) having attention drawn to me and people looking at me.  Hopefully this is something I will get more used to.  It was great having the two of them there to distract me and make me feel less alone.

Wearing Geoff’s jacket over my pretty dress – it got quite cold!

Peter was true to his word and stayed until every single fan who wanted to had a chance to say hello and have their book/DVD/whatever signed, then all the theater workers still there got their turn.  I’d told my mom I would have him sign a book for her (“The Rhinoceros Who Quoted Nietzsche And Other Odd Acquaintances,” which contains “Professor Gottesman and the Indian Rhinoceros,” the favorite short story of my mom’s, mine, Cat’s and Peter’s) and Katie and I wanted our own photos with him to cap the day off right.

Getting mom’s book signed.

Katie, Peter and me!

And then it was all over!  Months of mental planning, weeks of physical planning, all the crunching and sleepless nights and hard work… it was done.  I was relieved and disappointed, and also knew that it was going to be one of the highlights of my entire career, no matter what else happens.

We didn’t leave Newport Beach until 1:30am, and it was closer to 3 by the time I got home and went to bed.  Luckily I was so exhausted it overcame my nerves and I didn’t have too much trouble getting to sleep.  I knew the next day was going to be ugly, and it was.  You can’t throw that much work and lack of sleep at ME.  Not to mention the very long, emotional day it had been and how late I’d been up.  ME doesn’t let you get away with that kind of shit.  I planned on feeling pretty terrible, and I did.  But it was underscored by a feeling of deep satisfaction, and even more, an overwhelming sense of gratitude for everything that had happened.  I was a bit emotionally fragile by then, and I burst into tears more than once that day, just out of sheer joy and thankfulness.

I am so grateful that I get to partner with Conlan and Peter.  I am so thankful they not only agreed to let me do my photo, but were enthusiastic about it.  I am blown away by what amazing people everyone at Conlan, my friends, models, family and husband are.  They have all been so immensely supportive of me and my art and my journey…especially Geoff as I ignored him night after night in my struggle to complete everything.  I am very lucky to have wonderful neighbors who will let me conduct an entire photo shoot in their home at the drop of a hat,  Everyone who reads this, who emails me, who comments on photos, who encourages me to create, thank you all.

But most of all, thank you to Peter.  Not just for creating the measuring stick by which all other fantasy will always be compared.  Not only for ripping our hearts out with his words, and returning them back to us more whole and healed.  And not just for being willing to play the King, but for being the King.  Peter simply is all those qualities that make me love the King so much.  And I got to capture it forever in two photos in my favorite, most meaningful series.  That is unbelievably wonderful to me.  Thank you for all of it.

And with that, I present to you the DreamWorld King.  Detail shots are below each main image.  Click on them to see them larger!

Beloved Of The Crown

Beloved Of The Crown – detail

Beloved Of The Crown – detail

Beloved Of The Crown – detail

Beloved Of The Crown – detail

Beloved Of The Crown – detail

Beloved Of The Crown – detail

Beloved Of The Crown – detail

Beloved Of The Crown – detail

Beloved Of The Crown – detail

Beloved Of The Crown – detail

Beloved Of The Crown – detail

Beloved Of The Crown – detail

Beloved Of The Crown – detail

Beloved Of The Crown – detail

Beloved Of The Crown – detail

Aerie

Aerie – detail

Aerie – detail

Aerie – detail

Aerie – detail

A very quick, thankful, somewhat tear-stained selfie the day after the shoot, wearing my beautiful horn from Firefly Path, which is going to be my every day wear now. Click here to visit their Facebook page to get your own horn!

Thank you to every single person who helped make this day happen.  I will never forget it.  🙂

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5 Years of ME and Me

Yesterday, the 27h of May, marked my five-year anniversary with ME… which leads me to talking about why I call it ME verses the multitude of other names given to it, in addition to introducing my latest photo on the subject which you can WIN a print of!  Make sure you read all the way to the end to find out how to enter 🙂

A detail shot from my new photo

I’ve been wanting to address this for some time and it just keeps getting pushed down to the bottom of my blog to-do list.  But my anniversary seemed like a good time to bring it up.   In the United States, we call ME by a whole host of other names; Chronic Fatigue Syndrome (CFS), fibromyalgia (fibro), chronic fatigue immune dysfunction syndrome (CFIDS), post-viral fatigue syndrome (PVFS), Chronic Epstein-Barr virus (CEBV), and most insultingly, the “yuppie flu.”  Luckily we seem to have mostly left the “yuppie flu” label behind us, but many of the other names are not much better.  Calling it Chronic Fatigue Syndrome has been likened to calling tuberculosis “Chronic Coughing Syndrome,” or stomach cancer “Chronic Upset Tummy.”  The names are not indicative of what’s really happening in our bodies.  They are trivializing and patronizing.

I like myalgic encephalomyelitis (ME), which is what most of the rest of the world calls it.  It literally means “inflammation of the brain and spinal cord with muscle pain.”  This at least hints more accurately at what may be going on.  Muscle pain is one of the defining characteristics of reaching that diagnosis (as I can personally attest to; I woke up nearly weeping from muscle pain after a strenuous shoot yesterday) and the evidence is suggesting more and more that this is ultimately a neurological condition.  ME at least doesn’t carry the negative connotations of the other names; people are generally under the assumption that they are not “real” diseases.

In Between Awake And Asleep

I should be perfectly clear that there is still a tremendous amount of controversy over what name to give us, and if they really are all more or less the same disease.  I genuinely believe they are the same disease from everything I’ve seen and read, but there will be many who do not agree with me.  However, since the entire reason the US broke off from the rest of the world’s name in the 1980’s was to create an insurance loophole so companies could deny coverage to patients… I am reluctant to believe what anyone on that side of the table claims.

So I call it ME, though since it is a lesser-known name here in the US, I’ll often consent to referring to it as ME/CFS.  Meeting the names halfway, so to speak.

As I said, yesterday was my five-year anniversary with ME, although the signs were certainly starting to form years before that.  I was unnaturally tired all the time, I got sick and injured easily and seemed to have a little more trouble healing.  But since I barely knew ME existed, and I was young, in my late teens and early twenties, I figured it would pass.  You think horses, not zebras; you don’t automatically jump to the conclusion that you have a strange, little-known disease.

A Fading Girl

Some of you have heard the story of how I became acutely sick with ME before, so I will try and just hit the high points.  Five years ago Geoff and I went out to lunch.  We’d been dating for exactly a month.  After lunch, I felt tired so I laid down and took a nap.  When I woke up, my stomach was very upset and I thought I had food poisoning.  Though it wasn’t pleasant, I figured it would pass quickly.  Several days later I still felt nauseous, so I saw a doctor who was very unconcerned about me and suggested I take some Pepto Bismol.  How helpful.  Over the next several days the pain in my stomach gradually changed from an all-encompassing gripping, nauseous pain to an extremely sharp and localized pain in my right flank.  Appendicitis? I wondered.  The pain was higher than would be classic, but it was so sharp, extreme and had come on so suddenly, I worried nonetheless.

After 10 days of pain and nausea, I finally saw a good doctor.  They determined pretty quickly that it wasn’t my appendix, ordered an ultrasound and a LOT of bloodwork (the only reason I didn’t faint was because I was sitting down, but I felt bad enough to wish I’d fainted.)  Everything came back normal.  They thought it must be a kidney infection, so I took the antibiotics, glad that we had figured out what was wrong and that I’d be over it soon.  But the treatment didn’t do anything; I still felt terrible.

That same story repeated and repeated over the next few years.  For a long time it was thought that my crazy flank pain and my fatigue were two separate problems; at this point, I believe the evidence indicates they both stem from the same cause.  I have undergone more tests and procedures than I care to remember, I have tried every food and supplement imaginable; every Western and alternative approach.  Occasionally I find something that helps even fractionally, and I cling to it like a drowning girl.

When I think back on this time, I feel like what was happening in my body is best expressed by this scene from Akira, near the end of the movie.

Tetsuo’s grim end.

My body seemed to completely fall apart and spiral out of control, with me stuck in the middle of i.  Up until then, I had been quite consistent with doing Pilates and yoga, and enjoyed their effects on my body.  I ate pretty well, I didn’t smoke, drink or do any drugs.  I felt like I was doing things right.  But when ME finally hit, none of that mattered any more.  My body became a disgusting, horrible prison with a mind of its own, seemingly bent against me in every way.  And the fact that almost none of this showed outwardly made it even worse.  One of the things I hear from other ME people as being the most frustrating thing is having people say to them, “You don’t look sick.”  It’s true, often we don’t (until you get into the very dire, extreme cases of ME) but inwardly, that movie clip is what I felt was happening to me.

Thankfully, the flank pain has been reigned in somewhat over the years through arduous nerve-blocking injections, although it never truly goes away.  And we still have absolutely no idea what’s actually causing the pain in the first place.  But since it used to feel like I had a shard of glass trapped inside my abdomen, I’m very grateful for every bit of pain chipped away from it.  The fatigue and muscle/tendon/anything-but-my-flank pains have all gotten steadily worse over the past five years.

The Fog Rolls In

My life has become smaller and quieter each year in response to the unreasonable demands of my body, only to have it ask for even more.  To a degree, it’s generally agreed that staying as active as possible is best; that “if you don’t use it, you lose it.”  This is tempered with one of the few things known with absolute certainty about ME: if you continually push yourself past what you can handle, you WILL get worse.  And it can get much, much worse than what I experience.

The UK documentary Voices From The Shadows paints an uncomfortably vivid picture of how bad ME can really get.  It shows people completely bed-bound, in constant, wracking pain, despite morphine drips, eyes continually covered as they are unable to endure even sunlight filtered through curtains.  Ears always protected with earplugs because they are so sensitive to sound.  From my end of things, going to the grocery store is only barely tolerable.  All the light and noise, oh the cacophony of noise… people talking, carts wheeling, plastic crinkling, children crying, music playing, announcements made… I genuinely dread the necessary trip each week.  And if I feel that way about it when my case of ME is one of the mildest diagnosable forms, I can hardly imagine the miserable existence the poor souls with severe ME endure.

Unjust

I don’t want to have to know what severe ME feels like first-hand.  So I keep trying treatments and supplements.  I modify my bedtime, my sleep habits and try to rest as much as possible, without giving up any of the physical ability I still have.  I try to do gentle yoga and do more walking, which I can also use as time to scout locations.  My family and friends all know that any plans made are subject to the whims of my body and I may have to cancel at the last minute.  Very, very thankfully, they have all been extremely understanding and supportive.  It’s a hard enough battle to fight your body every day; I am sorry for those who also have to fight with their loved ones too.

People not understanding is at the core of our problems.  The medical community that doesn’t understand what our disease is or how to help us.  The public, who have been led to believe our disease is not valid.  And we ourselves who are trapped in these confusing, maddening bodies that seem to be actively working against us.

Breakable

Luckily, I do believe the tide is finally starting to turn.  More and more noise is being made about ME, and we are starting to get even a little bit of recognition and validation.  More research is being dedicated to finding out what’s really going on in our bodies.  I try to maintain a balance between being open to changes coming and breakthroughs being made without actually hoping for them.  The disappointment is too great when they don’t pan out.

Through it all, the highs and lows, the dinners I can attend and the ones I have to stay home from, the times I weep from pain and frustration and the days I walk easily through meadows, I have my art.  I’m sure you’ve all heard me talk about my Enchanted Sleep series, photos from which are scattered through this post, and how I use my photos to portray what living with ME is like.  Art has helped me keep my sanity through these last five years.  It’s something I can do, not just in a metaphoric sense and raising awareness, but it’s physically something I can do.  Walking through the woods scouting locations is good for me, body and soul.  I can still edit even when I need to lay down (which is frequent) since I work on a laptop.  Sometimes muscle or tendon pain in my right arm or wrist will force me to stop for a few days or weeks, and those are always agitating times.  I want to be creating.  That is where my soul finds meaning and pleasure.

Spoon Theory

It’s been a rough five years.  But it’s also brought some incomparable joys to my life; my discovery of photography, for example.  And most importantly, Geoff.  Geoff who stuck by me when I became very ill after we’d only known each other for two months, and been dating one month.  Lesser men would have run.  He has supported and loved me every step on this tricky road, and is always there in the dark moments when I want to give up.  He gently pulls me up and sets my feet going again.  I am so incredibly grateful for him.

To be honest, I have been depressed with this anniversary looming ahead of me.  I have heard that if you don’t go into remission within the first five years, you’re never going to.  And while intellectually I realize that’s a pretty ridiculous, sweeping statement to make (how could anyone possibly know that when we don’t even know what it is we have?) it’s made this date feel even gloomier.  I am choosing to not believe that I will automatically never go into remission, simply because it hasn’t happened yet… but it’s also ok for me to feel sad.  It’s ok for me to mourn the things I have lost.  It’s ok for me to have bad days when I just cry and burrow under the covers all day.  It’s ok to be human and have emotions.

Mourning For Things Lost

I work hard at my art, not only because it’s so deeply satisfying, but because it’s something I hope to make a career out of.  Means of employment get fewer and fewer for me every year, but I can do art.  It’s a way for me to earn money and contribute to my family’s income, things very important to my sense of identity.

I think this is going to be a good year for my art.  Not only with my recent good news, but other things are starting to happen too.  I think this is going to work.  But please feel free to support my work and pick up some blank greeting cards, limited edition prints or sign up for my online self-discovery-through-photography course.  🙂

Each journey through ME is different.  This is just my story.  I can only hope that by telling it, it adds another drop to the sea of change coming and will bring us a tiny bit closer to recognition and a cure.

Longing For Better Days

I’ll just say a few words about my latest Enchanted Sleep photo, Vanity’s Murder.   My hair has always been quite fine and refused to grow any longer than my shoulders.  No matter what I did, how often I did or didn’t cut it, nothing changed that.  While it’s always annoyed me, since I would love to grow it romantically long, it was a fact of my life that it never would.  A few months ago, I thought my hair seemed a little shorter, but I dismissed the thought.  It kept nagging at the back of my mind though, even though I hadn’t gotten it cut in months.  Finally, I looked at a photo of me from about six months ago and I was shocked by the proof of how much shorter my hair was; nearly down to chin-length.

I went in to my doctor, since hair thinning and loss is a possible side effect of almost every medication I take, but he suspected it was a response to stress, not medication.  I finally made an appointment to see my fantastic hair guy (Hurley, at The Hair Pyrates).  He agreed that the loss was probably stress-related too, but importantly mentioned that the hair I’m seeing now first started growing four to five years ago… and I think we can all agree that I started undergoing a great deal of new stress five years ago.

After everything ME has taken from my life, all the things it’s made me give up, my hair just felt like the absolute last straw.  I had no idea how much of my feminine identity was tied into my hair until its existence felt threatened.

The good thing about stress-induced hair loss is that it’s usually pretty reversible, at least in theory.   At Hurley and my doctor’s suggestions, I started taking a hair, skin and nails supplement and I was startled by how quickly I saw a difference.  It still has a ways to go, but I’m so grateful that it is coming back.  Worrying about my hair may seem like a very superficial, frivolous thing, but it wasn’t to me.  It was about having one more thing taken away from me, it was about losing control over another big factor of how I appear to the world, and the things that contribute to my identity.  There is so much about ME that is outside of my control.  I am very thankful that this time, I could fight back, and actually win a little.  Let’s hope this is a sign of things to come.

Vanity’s Murder

Vanity’s Murder – detail

Vanity’s Murder – detail

Vanity’s Murder – detail

Vanity’s Murder – detail

Lastly, let me tell you about how you can win a signed and numbered limited-edition print of Vanity’s Murder!  The very kind people heading up the ME and You fundraiser were very receptive when I wrote them and offered to donate a print to their cause if it would help them.  And while I’m sure they have more than enough on their plates, they quickly came up with a way to do this!  Want a chance to win the print?  Follow the directions below!

• Click on the ME and You button below and donate whatever amount you can through the big yellow “Donate” button on their site.
• Leave a comment on this post saying that you donated and mention that you’re entering to win Vanity’s Murder, as several artists are doing similar giveaways.  Make sure that the name you leave in your comment matches your Paypal name!
• Leave a message for the ME and You people during your Paypal  checkout, again stating that you’re entering to win Vanity’s Murder.
• A winner will be randomly selected on June 6th and I will announce the winner here!

That’s it!   This is such a win-win situation; the cause is so worthy and someone will get a beautiful print as well.  🙂  For anyone who missed it, the amazing people at ME and You are trying to raise funds to do further testing of a new drug that has shown real promise in helping to cure ME.  This is something we absolutely must study more, and hopefully, within a few years it will be approved and people all over the world will be able to try it.  And just maybe, some of them will go into total remission like some of the people who it’s been tested on.

Remission.  I can hardly imagine what that would feel like.  But I would love to find out.  If you can, please consider donating to this great cause.  And thank you very much!

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