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 – © 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!

• Rent or buy the new ME documentary, Forgotten Plague.  Consider hosting a screening of it for your friends and family!
• Write a one-click letter to Congress to increase ME’s funding.
• Join in the #MillionsMissing protests in Washington DC and other locations through the world on May 25.  You can participate even if you’re too unwell to join in person or if there isn’t a protest near you!
• Wear a blue ribbon in real life or add one to your social media avatar.  Thanks to MEAdvocacy.org for the instruction!
• Start a discussion, link to articles, blogs, videos and/or artwork that discusses ME or other invisible illnesses that will help spread awareness.  Add a #may12th hashtag to your posts!
• Donate to an ME-related group, such as the Microbe Discovery Project, or help support those with invisible illnesses by purchasing items from our online shops.  Get some cute awareness-raising jewelry from The Hopeful Spoon, crystals to meditate and heal with from Mineralism Crystals (or just enjoy looking at!), museum-quality fine art prints from yours truly, give yourself or someone you love the gift of self discover and art with my online photography course Introspective, or a wide variety of fun and practical items from my RedBubble shop!
• See this article from ProHealth.net for more ideas!
• Watch and share the video below which I made last year:

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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Walking Dead On The Hero’s Journey

I had the great pleasure recently of shooting with Lauren Cohan, the very talented actress many of you will know as Maggie from AMC’s The Walking Dead, which has its season finale this Sunday!  She was also a special guest lead in this week’s episode of Law and Order: SVU.

I’d had a couple of concepts in mind to use with her, so let me back up a little and take you through the whole creation process.

I’ve been reading The Hero With A Thousand Faces, by my idol Joseph Campbell, in which he really delves into his concept of the Hero’s Journey. The Hero’s Journey, aka the Monomyth, is the story outline that all classic stories, folktales, myths, fairy tales and most popular movies of our day follow.   I will let him describe the basic Hero’s Journey in his own words: “A hero ventures forth from the world of common day into a region of supernatural wonder: fabulous forces are there encountered and a decisive victory is won: the hero comes back from this mysterious adventure with the power to bestow boons on his fellow man.”

Star Wars, Lord of the Rings, The Matrix… it’s easier to find examples of stories which are not variations of the Hero’s Journey than those that are.  And of course, the actual Journey he proposes is much more complex than that brief blurb could touch on; there is the Departure, Initiation, and Return, each of which have six or seven individual steps.

I’ve found the Hero’s Journey to be a fascinating concept ever since I first heard about it.  And as Joseph Campbell wrote so heavily, and influentially, about dreams, myths and the importance of both in our modern lives, I knew his work would color much of what DreamWorld is becoming.  Recently I decided I would like to do a sub-series in DreamWorld portraying each of the steps along the Hero’s Journey.  It will be a challenge, and a long journey of its own, but I felt it would make an important contribution to DreamWorld.

As I’ve been reading The Hero With A Thousand Faces, Joseph Campbell has been taking us through the Journey one step at a time, using examples from mythologies and religions all over the world.  Crossing The First Threshold  is the moment where the hero is given his first real challenge and he realizes there’s no going back (eg, taking the red pill).  In illustrating this step, Campbell talks about a story where a thunderbolt in one’s belly is used as a metaphor for a person’s essence.  It is their soul, their spiritual center, and it is what gives them the strength and intrinsic ability to overcome the challenges the Journey will throw at them.  I loved that image, so I set about figuring out how to incorporate it into my photo.

While I puzzled out the thunderbolt, I decided to start working on two pieces of my Hero’s costume; a crown and an amulet.  I made them both in a very similar easy, quick way, starting with some cardboard from a cereal box I had finished recently.

I had a large deer-head necklace that I’d been wanting to use for a while, and I thought it would make a beautiful center to the amulet.  I doodled a complimentary shape on the cardboard, traced the shape onto a piece of paper, flipped it, and gave myself a very symmetrical base.

Next I started working on the crown, using the same doodle-trace-flip method to give myself as much symmetry as possible.

Pinning and gluing the crown pieces together.

Once I had the basic shapes down, it came time to wrap them all in aluminum foil.  I just smooshed it on, not worrying about making it smooth, since having a bit of texture was going to actually be good for my purposes.

Foil-wrapped cardboard.

The next step is one I remembered learning as a kid from a library book which taught you how to make your own toys and crafts; pirate coins in this case.  Smear black paint on the whole surface, then rub most of it off with a paper towel.  The paint will stick just in the cracks and crevasses, giving a much more authentic, aged, weathered look to the pieces.

Post paint.

I added a couple of hair combs to the crown to help it stay it Lauren’s hair.  Then came the fun part; decorating them both!

I knew I wanted to use the deer necklace on he amulet so I twisted it on with a few wires, so I have the option of taking it off and using it somewhere else later (as I almost certainly will).

At the bottom is a decorative piece from a hair pin I’d gotten as a teenager and never got rid of after it broke because it was pretty. I am SUCH a magpie, but it can be a handy curse.

I dug into my bead stash and found a bag of purple and orange beads of various sizes and shapes which I thought would work really well.  I began hot-gluing them on, which is not the way to do it if you wan something really solid and lasting.  I did not.  I wanted it to hold together long enough to shoot, then be easy to take apart and use the beads again somewhere else.

Done and done!  Now on to my thunderbolt/soul piece.  I do not recall the exact chain of thoughts that led me down this path, but something about the word ego and its similarity to egg made me want to give the soul an eggy, oval shape.

This one I started with a cardboard oval, cut from more of the same giving cereal box.  I covered it with foil, then glued lot and lots of little scraps of lace (left over from my lace leaves) to give it a little dimensionality and wrapped the whole thing in plastic wrap.

Plastic-wrapped soul egg.

I painted the outline with some soft purple paints, darkening the color gradually around the perimeter.  And lastly, as a nod to the “thunderbolt” part of the story, I topped it off with a sparkly, snowflake-shaped ornament.

All that was left was the glue the egg onto a length of wide ribbon to make a belt of it, and there I was done!

The day of the shoot arrived, and Lauren was fantastic for everything; a trooper and such pleasure to shoot!  I suspected that Lauren’s acting ability would lend itself well to my concepts for her, and she did not disappoint; she was wonderful 🙂

Me trying to explain the whole concept of the Hero’s Journey, its history, meaning and subtext to Lauren… my models all have to listen to me pontificate a lot. She bore this with good humor… or rather, humour, in her case, since she’s British.

The ubiquitous Calantha bomb of the talent; she manages to work herself into the background of most photos at least once.

 

This time Calantha not only photobombed us, but she decided that my laying on the ground to get the angle I wanted was irresistible and she HAD to lay down with me.

She decided I was boring, so she took a nap.

I have another photo to work up still, but I’ll be posting those later.  Editing just this one was tough enough; I put well over 50 hours into it.  I’ll need a little break before I get to the rest!  But for now, here is Lauren Cohen Crossing The First Threshold of the Hero’s Journey!

Crossing The First Threshold

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The Power Of Myth

I use myth, symbolism and metaphor heavily in my art.  It’s just the way I’ve always been, the natural way for me to express myself visually.  When I drew or painted, the same style and language was evident, and now it has translated itself into photographs.

While everyone is allowed to have their own thoughts and feelings on art, I’m going to make the statement that myth matters.  Myth is important.   Myth retells us the stories of our lives, but in dramatic and tangible ways.  When you read a story about the young hero off on his quest, it’s easy to see the tests and trials he encounters, and what he needs to do to overcome them.  You fully believe he will succeed even against overwhelming odds.  In our own lives things become muddy.  The trials and tests are never as clear for us as our hero, and the solutions rarely so evident.  And that is when myth steps in, crosses the divider from fiction to reality and helps us.

Myths actually help us in the real world.   When I am overwhelmed and feel I cannot possibly go on, I think of Aerin in The Hero And The Crown, sent to face a dragon she cannot possibly slay herself.    When I am tired, I think of the Fellowship, walking day after day, after day, after day, to get the Ring to Mordor.  When I am hurt and am certain my wounds will leave me damanged forever, I remember the healing Lissar went through in Deerskin.

Myth matters.

Myth helps us carry on.  By looking into other worlds, we are able to see our own much more clearly.  We are able to overcome, because we saw the heroes overcome.  We believe in ourselves because we believed in them.  We can create miracles in our lives after seeing our heroes create them.

Mythology may seem like a very antiquated idea these days.  Something charming the ancients used, but which we today have evolved beyond.  I would say there’s no time we need myth more.  The capacity for good and bad has rarely been as dramatic as it is in our current times.

Myth would insert itself into my work whether I wanted it to be there or not.  It is part of me, part of how I see the world.  But I am glad it is there.  I embrace it fully and celebrate it’s existence.

And thank you, mom, for buying me a book on Greek mythology on a whim when I was 14 and opening me up to this glorious world.  I would be a lesser person without it.

Bound; feeling trapped by your past.

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