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Posts Tagged ‘dress’

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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I have new images for you as well as some updates about my personal life!  Since most of my personal life ends up coloring my images in some way or another, I suppose that makes everything relevant, right?  🙂

Mountain Dweller teaser - © Sarah Allegra

Mountain Dweller series teaser – © Sarah Allegra

I recently had a shoot with a model who was new to me, the lovely Teri Wyble!  Sadly for me, she does not live in Los Angeles, but she does travel here now and then and we’ve already made plans to do more shooting next time she’s in town.  She was such a joy to work with; she’s not in modeling just to look pretty or puff up her ego, she’s interested in telling compelling stories.  She has a natural grace and beauty which lend themselves perfectly to my kind of photography.  On top of that, Teri is also just a really wonderful soul, full of love and kindness, and we share many of the same interests.  It was a perfect collaboration!

I’m also going to be sharing a bit of my spiritual journey with you guys here.  For anyone who’s curious, I am a lightworker, but I don’t define my spirituality much beyond that.  Organized religion does not work for me, but I know many people who love their branch of it.  If it’s a good fit for you, stick with it!  If not, you’re still ok and you can still be a spiritual person.

Mountain Dweller 1 - © Sarah Allegra. Model: Teri Wyble.

Mountain Dweller 1 – © Sarah Allegra. Model: Teri Wyble.

I believe in an unconditionally-loving higher power, which I like to refer to as Source.  “God” brings to mind all sorts of connotations which I personally find hindering.  I believe that everyone and everything is made up of energy, as physics teaches us, and since energy cannot be destroyed, it’s most logical to me that life continues beyond death.  I have no doubts about this.  I have spoken to and had contact with those who have passed over… which would have been enough on its own to convince me of our eternal life, but I do feel science supports this idea as well.

Toward the beginning of the year, I experienced an EXTREMELY powerful guided meditation with a lovely woman named Mojo.  If you’re interested in her services, you can find her page on Fiverr here!  She currently doesn’t advertise her guided meditations, which she does live over the phone with you, but if you contact her, she can arrange it for you.

Mountain Dweller 2 - © Sarah Allegra. Model: Teri Wyble.

Mountain Dweller 2 – © Sarah Allegra. Model: Teri Wyble.

During this guided meditation, I actually got to meet and speak with my two main guardian angels.  Prior to this, I had believed in angels in a vague sort of way, but despite how much I would have liked it, I never felt that I could successfully connect with any of them.  I have also done other guided meditations which are supposed to introduce you to your angel without much success other than feeling more centered afterward, like with any meditation.  My point is, the meditation with Mojo was very different.  I could actually feel and sense my angels; I could hear and even see them in my mind.  I know now that they have always been with me every second of my life, and they will for the rest of my time on earth.  I am never alone and they are a great comfort to me.

This new connection with my angels led me to buy a handful of books about angels; I wanted to learn EVERYTHING that I POSSIBLY could about them!  As I’m sure you all know, my passions are all-consuming.  When a new one ignites, my life becomes focused on that and only that until I feel I have a grasp on it.  For anyone else interested in learning more about angels, I recommend Angels In My Hair by Lorna Byrne, and The Angel Therapy Handbook by Doreen Viture.  Both are fascinating, well-written and impart excellent knowledge.  Angels In My Hair is more of a memoir while the Angel Therapy Handbook is more of a textbook.  I feel they compliment each other well.

Mountain Dweller 3 - © Sarah Allegra. Model: Teri Wyble.

Mountain Dweller 3 – © Sarah Allegra. Model: Teri Wyble.

I mentioned being a lightworker a little bit ago.  What I mean by that is that I am certified at level 2 in Reiki.  I do energy work, sending positive energy to people, animals, places, situations, objects, whatever you want.  It’s healing and can never be used to harm.  I also began meditating much more regularly this year.  In the past, when I’d try meditating, I would always enjoy the effects of it, but I had a lot of trouble making myself do it with any consistency.  I’m not sure what changed, but for some reason, this year I was able to push past that.  Once I got over that initial block, I discovered that I LOVE meditating!  It’s incredibly healing and healthy for your body, mind and soul.  I found it was a bit like starting to work out.  At first, you don’t really want to do it, but after a little while of making yourself stick with it, you like it and actually begin craving it.  I now have meditation (guided and not) as a regular part of my life and I’d highly recommend it to absolutely everyone!  One thing I discovered are the millions of meditation tracks on YouTube; literally something for absolutely everyone and every interest.  There are also long tracks of nature sounds and/or music, some with binaural beats in them, some lasting up to eight hours, so you could listen to them all night while you sleep.  I’ve been learning a great deal about crystals as well from my dear friend Jessi who owns the shop Mineralism Crystals.  I HIGHLY recommend her if you’re in the market for anything!  Even if you don’t see something in her online shop, chances are, she has it.  I’ve placed numerous orders with her and they always exceed my expectations!  Also, she is a fellow spoonie, so your money goes to help support her as she’s unable to work a “regular” job; win-win!

As all these new revelations were opening up to me, meditation, angels, being able to “hear” animals more clearly when I contacted them energetically (for example, I was able to help one very special cat overcome his abandonment fears when he was newly adopted, something I was honored to have been a part of), Teri came along and we had our shoot.  I knew that I wanted some of this deeper spirituality to be reflected in something we shot, but I wasn’t really sure how.  However, I did know that I wanted to photograph Teri in a beautiful lace dress I had… that combined with feeling inspired by some images Geoff shot recently with a back-lit model that made me decide I would shoot an “angelic” look with the gauzy white fabric and light behind her.  (Although really, just try and make her NOT look angelic; that would be a far more difficult job.)

Mountain Dweller 4 - © Sarah Allegra. Model: Teri Wyble.

Mountain Dweller 4 – © Sarah Allegra. Model: Teri Wyble.

As I suspected, Teri made the perfect angel.  Sorting through the images later, I realized that I was creating a new race of DreamWorld beings.  The Aethereans, as I called them, are DreamWorld’s angels.  They live high in the mountains, away from the more populated areas so they can be focus on devoting themselves to spiritual studies.  They are very wise from their decades of pursuing the truth in every facet of life, as well as skilled and compassionate healers.  Many of the other DreamWorld inhabitants send their young to train with the Aethereans for several years, where they are taught empathy, love, plant and animal care, healing, sacred geometry and the mysteries of the universe.  I thought that the Aethereans needed some kind of uniform or mark that visually informed everyone of who they are and the spiritual life they have chosen for themselves, so I decided they would all have a flower of life symbol on their foreheads.  I wish I’d thought to actually apply this in real life to Teri, but this idea only came later.  Thankfully, Photoshop made it possible to add it to all the images!

Teri did such a spectacular job modeling, she made it so very difficult to choose which images to work up!  I ended up editing quite a few more photos than I typically would pick because I simply could not narrow my selections down any more.  It took a bit longer to finish these because of the volume I had to work through, but also because of a couple other wonderful new journeys I was taking…

Mountain Dweller 5 - © Sarah Allegra. Model: Teri Wyble.

Mountain Dweller 5 – © Sarah Allegra. Model: Teri Wyble.

Through a very miraculous series of events, I discovered Calista Ascension.  Calista is one of those very rare spiritual teachers who actually embodies and lives everything she preaches; I have met very few more accepting, genuinely loving and wise people in my life.  She offers numerous classes which I was lusting after, but when I saw that she created her own Unicorn Healing System which I could take online from the comfort of my home, I was hooked.  I had to take it.  Immediately.

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I’ll let Calista explain the course in her own words:

Unicorn Healing™ is a hands-on healing modality for empowerment and wellness, but also a development tool that can awaken your Souls’ gifts and purpose. It can be used as a stand-alone therapy or complemented with other energy practices.

Brought forward in 2009, direct from the Unicorn realm via Calista, it is a very sacred modality that can provide all that you are ready to receive.This is a course for those who are ready to step-up, break-through and arise in their POWER!

Just as you have a Guardian Angel that walks with you so to you have a Guardian Unicorn. Once regarded as the fabric of fairytales, Unicorns are very much real. They have walked with us since the times of Atlantis and are now returning to our awareness to help us awaken to love and the infinite potential we hold within.

As this is a distant learning course, you can set your own pace and progression. A commitment is required however as this course is deeply transformational – the more you put in, the more you will receive. The Unicorns are ever-present to those who wish to better themselves and assist Mother Earth to ascend with grace. 

Yes.  Unicorns.  REAL Unicorns.  As I mentioned earlier, I am well-versed with Reiki energy, which, I learned, is apparently an earth-based energy.  The Unicorns however hail from another planet (bear with me here) so their energy is cosmically-based.  (For those interested, Calista recorded an excellent podcast all about who and what the Unicorns are, where they come from, etc, with much more detail than I’m giving in this post, which you can listen to here.)  I hadn’t expected their energies to feel particularly different from each other; I just hadn’t thought about it.  You may believe that these Unicorns are simply a pretty fantasy I’m escaping to in my imagination (which I’ll freely admit is an escape I would likely pick!) but OH MY GOD – once you’ve felt their energy, there is NO mistaking them.  They are every bit as real as we are, and their energy is incredibly powerful… yet also full of the most unconditional love I’ve ever experienced.  It’s nearly impossible to describe how energy feels in words, but the ones that keep coming to mind when I think about my Unicorns are high, clear, clean, bright, powerful, silvery, shimmery, penetrating, deep, beautiful, wise, loving, celestial, ethereal, and immense.  I love Reiki, but the Unicorns really kicked things up a huge notch for me.

Mountain Dweller 6 - © Sarah Allegra. Model: Teri Wyble.

Mountain Dweller 6 – © Sarah Allegra. Model: Teri Wyble.

As part of my studying, I went through an attunement with their energy, where I met my three guardian Unicorns, who all serve different roles, and who are all equally exquisitely beautiful.  I spent 30 consecutive days meditating and communing with them every day in different ways so we could really get to know each other.  And I also practiced doing healings with the Unicorn energy, both in person and across distance, much like you do with Reiki.  The Unicorn healings I’ve done so far have been the most powerful I’ve yet witnessed in my life.  Problems that have bothered people for very long times suddenly lose their sting, allowing the people to let go of them.  Hurts are overcome, trauma is healed.  They are truly miraculous.  And my guides assure me that I will become physically healthy myself in time.

My guides… yes, I should mention the other guides too.  Meeting the Unicorns as well as my angels has opened my mind up to the idea of there being more spiritual guides for us in the universe than I had previously realized.  Currently, in addition to my guardian angels and Unicorns, I also have a dragon guide, a pegasus guide and a mermaid guide, although I have not worked with them nearly as long or as deeply as the Unicorns.  I’ve also started to sense and sometimes communicate with the elementals all around me.  The trees in my yard, for example, will remind me if the bird feeder has gotten low or the plants need watering.  I’m becoming a MUCH better gardener with their help!  🙂

Mountain Dweller 7 - © Sarah Allegra. Model: Teri Wyble.

Mountain Dweller 7 – © Sarah Allegra. Model: Teri Wyble.

Then, right on the heels on my finishing up my Unicorn Healing course, I began taking Doreen Virtue’s Fairyologist course!  This is more or less what it sounds like; you learn all about the various fairies that exist, what they’re about (the fairies are mostly concerned with environmental and animal issues, but certain groups emphasize different causes), how to communicate and work with them.  At the end, you take a quiz and, assuming you pass, you become a certified Fairyologist.  As I’m also in the process of having all my Unicorn work reviewed by Calista as we speak, I’m on the cusp of becoming both a certified Unicorn Healer and a certified Fairyologist… both are NOT things I expected that I’d be saying if you’d asked me at the beginning of this year!

I’m telling you guys about all this for several reasons.  One, working with my guides and walking my spiritual journey is becoming an ever-more-present, ever-larger part of my life.  I wanted to just lay it all out there in one go and not feel like I had to tiptoe around it on my own blog.  Two, everything in my personal life effects my art.  Case in point, the images I’m releasing today.  I probably wouldn’t have even shot them if I hadn’t met my guardian angels, and I certainly wouldn’t have added the Flower of Life symbol to the Aethereans (who would not exist) without having learned more about sacred geometry in my studies.  In my life, there is very little separation between the real world and my art.  It’s all one big pot of stew where each ingredient enhances all the others.

Mountain Dweller 8 - © Sarah Allegra. Model: Teri Wyble.

Mountain Dweller 8 – © Sarah Allegra. Model: Teri Wyble.

And lastly, I’d like to invite all of you to explore your own spirituality.  When you find what works for you, there is very, very little in life that is as rewarding!  There are many charlatans both online and off, so you must be discerning in who you choose to listen to.  A strong connection to your intuition and sense of truth will help you navigate the waters.  Any of the people or authors I’ve mentioned in this post have gotten the thumb’s up from me if you’d like to start there!

Mountain Dweller 9 - © Sarah Allegra. Model: Teri Wyble.

Mountain Dweller 9 – © Sarah Allegra. Model: Teri Wyble.

I am an energy worker.  I work with Unicorns and angels.  I talk to animals, fairies and elementals.  I am a creator.  I collect crystals.  I am an empath.  I am a photographer.  I am clairvoyant and clairsentient.  I am a fulltime student of truth.  I am a healer.  I am a woman.  I am an artist.  I am Sarah.  I am me.  I don’t apologize for any of that.  You go be you, and don’t apologize for any of it either.  🙂

Mountain Dweller 10 - © Sarah Allegra. Model: Teri Wyble.

Mountain Dweller 10 – © Sarah Allegra. Model: Teri Wyble.

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This is one of those things that built up slowly in my head for a while, then suddenly crystallized with numerous people and sources suddenly (unaware of each other) all started giving me the same advice.  After some thought, and a little bit of regret, I’ve decided that they are right and I need to make some changes in how I approach my art.

I need to slow down.  This is very hard for me to do; art is my obsession and I want nothing more than to be producing all that I can as often as I can.

I also need to set my focus more narrowly on DreamWorld.  There is SO MUCH that you guys have no idea about yet, and I need to get to the place where I CAN show you all that stuff!

The thing is, I have to accept that for the time being, I have very limited supplies of time, energy and money.  I’m hopeful, of course, that I will eventually start feeling better, but for now, I have to accept that this how things are right now.  My energy and time allowances have shrunk every year since I first came down with ME.  My chronic pain, daily headaches and frequent migraines don’t help anything.  Since I’m dealing with far, far fewer productive hours in the day than your average person has, I need to hoard them and make the absolute most that I can with them.  None of those minutes can be wasted.

I’m still weighing things, but I may (for now at least) not edit every shoot on my hard drive.  Don’t despair, models waiting for images, I’m not saying none of them will be edited, I just have to really pare things down and only spend the time editing images which I REALLY love.

This also means that I’ll probably be putting out fewer images per year.  This makes me sad, and is the main source of my resistance to the idea of slowing down.  It’s really hard to watch all my friends and colleagues churn out fantastic image after fantastic image and have nothing even on the radar to be shown soon.  You get used to a certain amount of being left behind by the rest of the world when you’re always sick, but it doesn’t make it sting less each new time you feel it.  I love getting to show you guy a new piece!  It’s usually the highlight of my week when I post an image.  🙂  But despite this, I know that this is the right thing for me to do now.

I’m also making some big changes with a lot of DreamWorld concepts; changes which will make the images I do create even better and more impactful, but which requires quite a lot of work on my end which and won’t produce anything I can show you guys, even as a work-in-progress sort of thing.  On one hand, I feel dangerously close to being forgotten and left behind while other artists quickly turn out magnificent pieces… but again, I know that I need to do this preliminary work.  It’s going to have a ripple effect through all of DreamWorld and the images which come from it will be better than ever!  I hope you guys will be patient and not forget about me or DreamWorld in the periods when I have nothing new to show.  🙂

Thank you all for the love and support you have shown me and my work over the years.  It really means so much more than I can say!  I am so grateful for every single person who enjoys and follows my work.  Even if I can’t put out as many images as I have in the past, I can make sure that the ones I do create are the BEST that I can do.  It may frustrate me sometimes, but the extra work I’m pouring into DreamWorld is only going to make it better, brighter, tighter, more emotional and more meaningful.  Thank you for bearing with me.

You’ll notice there isn’t a new image with this post; that’s kind of the point!

And thank you, as always, to Geoff for being an unending font of wisdom, clarity and sage advice.  🙂

A Strange New World

A Strange New World © Sarah Allegra. A self portrait, one of the first images I shot for DreamWorld. I imagine this girl has just returned to our world after years of journeying through DreamWorld only to find that not a day has passed, much like Narnia. 🙂

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“I assess the power of a will by how much resistance, pain, torture it endures and knows how to turn to its advantage.” – Friedrich Nietzsche

 

Vanity's Murder

Vanity’s Murder, a self portrait

 

May 12th is called “Invisible Illness Day.”

You probably don’t know that…and that’s part of the problem.

Years ago, May 12th was chosen to be the international awareness day for chronic immunological and neurological diseases, which include everything from Gulf War Syndrome and Multiple Chemical Sensitivities to fibromyalgia (fibro), Chronic Fatigue Syndrome (CFS) and myalgic encephalomyelitis (ME).  Yet more money is spent each year trying to cure male pattern baldness than these diseases.

I’m all for a luxurious head of hair.  But, diseases like ME are taking lives.

A Fading Girl - model: Brooke Shaden.

A Fading Girl – model: Brooke Shaden

To be sure, “Invisible Illness Day” rolls off the tongue much more easily than “Myalgic Encephalomyelitis Day.”  But the name highlights one of the sources of great frustration for most of us — we often do not APPEAR outwardly sick, thus many people refuse to believe our illness is real.

Unfortunately, some of those “many people” include doctors, policy makers and insurance companies.

How do we fight an illness with no end, no cure, no treatment, no recognition?  How many people must die before the world pays attention?  How many sufferers must commit suicide from the hopelessness and misery they’re dragged through every day before change comes?  We fight it by bringing awareness of the problem, one person at a time.  Every tweet, Facebook post, blog entry, text and conversation you and I have about ME helps fight it.  Every petition we sign, documentary we watch and donation we give is a punch in ME’s face.  And here’s the latest way I’m balling up my tiny little fists.

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.    
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ME/CFS in not in our heads & cannot be cured with exercise & a better attitude.    
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ME/CFS is not a “female” disease; 20% of sufferers are male.    
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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.    

The Blue Ribbon - detail

The Blue Ribbon – detail

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!

Thank you to everyone for reading and participating!

Curious how ME became an invisible disease?  Stay tuned to find out more for Invisible Illness Week!

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!

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First post of 2014!

How was everyone holiday and new year’s celebration?  Geoff and I had the chance to take a little road trip to see some family, which was really fun!  We got to hit some stops coming and going we’d been wanting to see for a while, so I’ll just get right into it.

First stop was the Arizona Deer Farm!  I visited the deer farm with my family when I was about 4 or 5, and I remember it quite vividly.  I was very excited to realize that not only was the place still around, it was pretty much right on our way!  It’s more of a large petting zoo than a farm per say, and they encourage photographs to be taken.  I have a series coming up which is taking a lot of inspiration from deer, so it was very much a win-win situation for me!  Thanks to Geoff for taking all the photos that have me in them!

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There’s a path for people to walk on, and most of the deer mill about freely inside a large enclosure.   They have plenty of places they can go and hang out or take a nap that are well off the path, so they only are interacting with you if they want to.  And since you get a big cup of feed when you go in, many of them want to 🙂

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Most of the deer are fallow deer; as you can see, they don’t get terribly large, they come in a variety of beautiful colors, and they retain their fawn-like spots into adulthood.

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The price of food: one smooch on the head. This one thought it was a fair trade.

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Checking my hair for edibility; sorry, buck.

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Sadly, my coat is also not edible.

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The males have the most stunning antlers of any deer I’ve seen!  I took lots of photos of this handsome gentleman.

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Once we arrived safely in Kansas, we settled in to the cold weather.  They had an unusual amount of snow for this time of year, which was sighed at by all the locals but I rejoiced in.  We met up with Erick Riedell, a friend of Geoff’s since Junior High, who also got ordained and married us, and who is also a photographer.  In addition to being an all-around great guy, he’s a cancer survivor twice over now.  He had volunteered to be a part of DreamWorld while we were back, and I wanted to find a way to honor his battle and triumphs… hopefully I’ll be able to share the result of that shoot soon!

While we were wandering around a snow-covered wood for the shoot, I was enchanted by the fairy-world sparkle the snow gave all the plants.  I snapped this shot, which reminded me of the fairy tale of The 12 Dancing Princesses and the underground world where all the trees and fruit are made of jewels.

Little Jewels

Little Jewels

On our way back home we stopped at the Wigwam Motel, the epitome of Route 66 kitsch.  We’d stayed there once before, and while the rooms are humble, they are so fun to stay in!  It looks like very little has changed since it opened in 1950.

A cellphone snap of our wigwam.

A cellphone snap of our wigwam.  Those are my gloves on the car trunk, not a wad of used tissues as it appears.

As we made our way home from Arizona, we stopped at The Roadkill Cafe, another historic Route 66 stop.  They had great food (which was not at all made out of roadkill) along with a lovely hand-drawn sign honoring the fallen Hotshot firemen.  I had an unsettling moment when I saw the sign; my heart sank at the reminder of all the brave souls who were lost that day, but I loved that the cafe was honoring their lives and memories.  Regular readers will remember why the loss was hard for me.

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Thank you, Roadkill Cafe, for your very sincere and personal gesture showing your gratitude to the firemen heroes.

So now… on to the first photo of the year!  As much as possible, I feel it’s important to start a year off right with my photos.  Get going on a direction that will determine a positive trajectory.  I wanted my first photo of 2014 to be one I’d look back on proudly.  This photo ended up being quite a bit more work to edit than I’d expected, but I felt waiting a little longer would be worth it.

This concept was actually one I’d shot with Katie at our very first shoot many months ago, but it just didn’t turn out quite like I’d wanted.  The concept was a DreamWorld character; a wind spirit, or perhaps wind goddess would be more appropriate.

I started by making her an art nouveau-inspired headdress.  I remember I’d been looking at one of my books on Alphonse Mucha and had wanted to make a headdress similar to what many of his women are adorned with.

I used my foam head to pin and hot glue sensual, looping ribbons into a headband shape.  The forehead and sides were decorated with masses of little white flowers and small glitter-covered styrofoam balls in a variety of sizes.

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It was meant to be worn rather low over the forehead, which almost instantly gave it that art nouveau feel.

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After that, I hot glued long strands of ribbon to the headband and dotted them with a few more of the styrofoam balls which would help show the blowing wind, along with making it feel more magical.

The second shoot went much better than the first one did!

Where Earth Meets The Sky

Where Earth Meets The Sky

Where Earth Meets The Sky - detail.

Where Earth Meets The Sky – detail

Katie always plays ethereal goddess-types so easily!  Her acting chops are so important to the kind of photography I do.  We both would like to see this kind of headdress become fashionable so we could just go around wearing them all day, at, say, the grocery store… so how about it?  Would you like a wind goddess headdress of your own to help start a trend?  🙂

Thanks to Katie for her patient modeling and to all my readers!  I hope your year has been off to a great start!

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To give credit where it’s due, I have to say that I originally got the idea to shoot my grandmother for DreamWorld from Ashley Lebedev’s beautiful portrait of her grandmother.  It immediately struck a chord with me, and I began brainstorming concepts for my grandmother right away.

My Gramma is a really cool lady. She’s led a fascinating life and has been a inspiration to me of being a strong, spiritual, independent, loving woman. She taught kindergarten for 30+ years (and is endlessly patient and cheerful, as you would expect), is well read and recently got her first Iphone. I have such fond memories growing up with her, and I am so glad to have her in my life! I wanted this photo to celebrate her, and all that she is to me… or at least all that I can cram into one photo 🙂

My grandfather tragically died quite suddenly of a heart attack when I was 17. He was the love of her life… and really, the love of everyone who he came into contact with. He was a truly remarkable man, and I will tell you more about him one day when I finally get the photo honoring his memory shot in a way that I’m satisfied with. But for now we can say that he was extraordinary, and everyone was shaken by his loss, most of all my grandmother. I can only imagine how incredibly difficult and painful that must have been.

But Gramma handled it with such grace and strength, I was deeply impressed, even at my young age. She delivered a celebratory and wonderful eulogy at his memorial which left everyone smiling through their tears. And since then, though we all miss him greatly, his memory has been kept alive in a spirit of appreciation and love.

After my grandfather’s death, Gramma became even more involved with her church and eventually became a deaconess! For many years she helped lead a support group for those who had lost loved ones, something she could draw on her own experiences of her path to healing and let others know that it was possible to get through, no matter how dark it looked at the time.

So when I sat down to figure out what I wanted her photo to be like, I tried to distill Gramma’s essence into a single image. I saw her as a gentle leader, always leading by example, indescribably warm and accepting, looking for the best in people, and of course someone who is quite spiritual as well. It seemed like a shepherdess would be the best way to portray all of these qualities. I especially wanted to play up her radiating light in a world that is often dark, so I began to think of ways I could show that as well. A crown of light, I eventually decided, would be just perfect.

So, now to build a crown of light. After Googling a lot, I discovered electroluminescent (EL) wire! It’s wire that comes in a wide range of sizes and colors and every bit of it glows. It’s not just a string of LEDs in a plastic tube, this stuff actually produces solid light all on its own with a handy little battery pack. Perfect! I ordered some and eagerly waited for it to arrive.

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I wanted to give it a little bit of an art nouveau flavor, since that’s one of my favorite visual styles.  I started building a light wire frame, enforcing it as I went.

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After I had the frame fairly sturdy, I started adding in nouveau-like swirls with the EL wire.  You can see one of my Mucha books under the crown for inspiration as I went along.

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Ok!  It was a little rough, but the general shape was there and it definitely glowed!

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At that point I strung along some very small, light, and also battery-powered LEDs, which I would encase in a small flower.  You can see one here covered with a flower while the rest are bare.

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The finished crown!  I knew I’d be doing some adjusting of it once I actually saw it on Gramma’s head, so I didn’t worry about making it 100% perfect right then, but the bones were all laid.  Now there was the problem of finding a lamb….

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Google again came to my rescue by connecting me with Terry from Task Farms.  Terry is just a sweetheart of a man.  He runs the farm just out of the pure pleasure of it and has lots of sheep and goats.  None of the animals end up on anyone’s dinner plate, which made it an even more perfect place to shoot!  I ended up getting several photos taken that day, but you’ll hear more about the farm in detail when I get the rest of the images worked up.  As it happened, he had an adorable and very silly little lamb named Too Cute who was just perfect.  Task Farms is out near Palmdale, which is a bit of a drive from here, so Katie, Brooke, Meredith (who wanted to take behind-the-scenes photos) and I all drove out together.   I had Katie put on the costume Gramma would be wearing, chose a neutral location and let Katie be Gramma’s stand-in.

Thanks to Meredith Lynn for coming along and taking great behind-the-scenes photos like these!

Thanks to Meredith for coming along and taking great behind-the-scenes photos like these!

Once I had the photos of Too Cute, I set up a shoot with Gramma, which was delightful.  She is a natural model, and I found out during this that she had been a live model for art classes while she was in college!  What a fun fact to know about her 🙂

So what do these photos convey to me?  They show my grandmother being the strong, gentle, and completely loving woman that she is.  She is a ray of light in darkness, someone who always lifts you up, cares for you and supports you.  She has been one of the most supportive people in my life when it comes to my art, always encouraging me and loving what I do… and I sincerely think it’s not just because she’s my grandmother and she has to like whatever I do, but because she genuinely believes in me and loves what I do.

So please meet my grandmother, Lucea, a truly wonderful and remarkable woman who I am so thankful to have in my life, and to have had the chance to photograph her!

The Shepherdess

The Shepherdess

The Shepherdess - detail

The Shepherdess – detail

The Shepherdess - detail

The Shepherdess – detail

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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.

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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.

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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.

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

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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.

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.

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).

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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.

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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.

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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.

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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.

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.

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

 

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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.

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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

Crossing The First Threshold

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