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Christmas Is Coming

I Felt It Was Glory Model: Travis Weinand © Sarah Allegra

I Felt It Was Glory
Model: © Sarah Allegra, sarahallegra.com

Well, it’s been a little while, hasn’t it?  A big part of the reason I’ve been so silent recently has been due to that bastard ME doing its usual bastardy things, just more of them and more frequently.  Sigh.  I won’t recount each and every thing, since not only would that be boring for you, but it would also take far too many spoons for me to type up.  So let’s just leave it at I was being held hostage by ME.

Between Awake and Asleep Self portait © Sarah Allegra, sarahallegra.com

Between Awake and Asleep
A self portrait, © Sarah Allegra, sarahallegra.com

Ok, I will actually tell you about one thing it’s been doing because it’s new and super annoying.  Keep in mind that I’ve lived through many winters by now, and this has never happened before.  Usually, summer in Los Angeles just about kills me each year, but the winter provides a much-needed break from the oppressive heat.  However, this winter I’ve been experiencing something very strange and it’s difficult to even put it into words.  It’s like my body is having a lot of trouble adjusting to temperature changes.  Say I go to sleep at night (as I usually do) and it gets kinda cold overnight.  I actually like things getting cold; it means it’s not hot!  But then when I wake up in the morning, the air is cold, the house is cold, so I bundle up and turn the heat on.  But then as I’m bundled up, I start to sweat, as if I’ve overdone it and now I’m too hot, only I still feel cold.  Then I’ll start sweating more, which does its job and starts cooling me off, so I feel even colder, so I pile on more clothes and heat, then I sweat more, and I get colder… and the cycle continues until I’m a tearful puddle of both ice and fire, shivering in front of the radiator, stripped down of as many clothes as I can bear, waiting painfully for my body to just figure it out.  Which might take an hour or two for it to do, and by then I’ve used up more than all my spoons for the day and it’s barely breakfast time.
Images from my 2017 calendar. Models: Teri Wyble and Dedeker Winston. © Sarah Allegra, sarahallegra.com

Images from my 2017 calendar. Models: Teri Wyble and Dedeker Winston. © Sarah Allegra, sarahallegra.com

It seems to be more of an issue when I’m stressed (thank you, Geoff, for pointing this out!) so staying calm helps, but you all know how easy it is to simply stay completely peaceful every single second of the day.  If we don’t let it get SO cold at night, that also seems to help, and if I force myself to warm up and cool down more slowly, those things help too.  But it’s just one more obnoxious way the ME toys with me and makes life more difficult.  ME, you’re a sadistic bitch.
Some time soon I will also tell you about FINALLY having another round of nerve-blocking injections after months and months of fighting with my insurance company over them and the recent developments in Calantha’s growth removals, but I’m not ready to get into any of that right now.  So, on with the show!
They Lived To See The Dawn A self portrait with Calantha, © Sarah Allegra, sarahallegra.com

They Lived To See The Dawn
A self portrait with Calantha, © Sarah Allegra, sarahallegra.com

This is the time of the year when I usually remind you guys of all the things I sell which would make excellent holiday gifts for whomever you have on your list, so I’ll keep to that tradition!

Of course, there are my fine art prints, available through my Etsy shop.  It’s not at all cost- or time-efficient to list every single image I have available in every size, so if there’s something you’d like and you don’t see it listed, just email me!

Two more images from my 2017 calendar. Model: Katie Johnson, © Sarah Allegra, sarahallegra.com

Two more images from my 2017 calendar. Model: Katie Johnson, © Sarah Allegra, sarahallegra.com

I also sell my images printed on all sorts of fun items through Red Bubble.  What kind of things?  Just about anything you could want!  Tshirts, mugs, scarves, leggins, clocks, phone and laptop skins/cases, stickers, blank greeting cards/postcards, tote bags, zippered bags… really, you name it, they probably have it!  I like Red Bubble because it gives a really wide range of prices starting just a buck or two for a sticker, so it’s workable for virtually any budget 🙂

2017 calendar, front and back. All images © Sarah Allegra, sarahallegra.com

2017 calendar, front and back. All images © Sarah Allegra, sarahallegra.com

Red Bubble is also my printer for my collectable yearly calendars!  You can get your 2017 calendar right here 🙂  These are some of my favorite things to produce, as well as some of my most popular items.  They’re practical and also give you an inexpensive way to have 12 beautiful images to display on your wall throughout the year; a great value!

I’d also like to mention that I’m really happy with the quality of what Red Bubble makes.  I’ve bought numerous items from them over the years, for myself and others, and I’m always very pleased with how they look and function!

Introspective: A Photographic Quest

Then there’s my self-discovery-through-photograhy-online-course Introspective: A Photographic Quest.  It’s still almost 50% off its normal price because I haven’t had time to figure out another hosting option for it yet (Udemy recently decided to cap all its classes at a maximum of $40 per class, regardless of the original cost).  Take advantage of that savings while you can!  This isn’t a class so much about camera functions, f-stops, shutter speeds, etc (although I provide links which explain those things to those who want to learn).  This is truly about exploring who you are as a person and portraying that through art.

The eight-week course gives you weekly prompts of things to photograph; it’s more like visual journaling than simply taking photos.  You can share the images if you want or keep them all to yourself, the choice is yours!  I built the class based on my experience with the incredible healing power of art and self portraits when I first picked up a camera; this class is completely unique and would make a wonderful gift for anyone who enjoys art and/or self reflection!
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And something new this year; I’ve also selling high-quality skin serum through my other Etsy shop!  This is a skin serum I developed while searching for the perfect serum for my own face.  I couldn’t find what I wanted anywhere, so I took matters into my own hands and made my own blend of oils!  Once I saw the wonderful results it gave me, I started giving it to friends for them to test and they also reported excellent results.  After many glowing reviews from friends and friends-of-friends, I decided to start offering it to everyone!

My serum is blended with high-quality, natural ingredients (no fragrances or fillers).  It’s 100 % vegan and cruelty-free and it is safe for all types of skin.  Each bottle is hand-made in small batches and infused with eternally loving unicorn energies!

Right now I’m offering two different versions, one for your face and one for your hands and nails, but the base of both blends are the same.  They contain rosehip seed oil (high in fatty acids, vitamins A and C, it helps to regenerate skin and stimulates cellular membrane and tissue regeneration), argan oil (an extremely healing oil overflowing with vitamins A and E and anti-oxidants, along with omega-6 fatty acids and linolec acid which helps ease inflammation while deeply moisturizing the skin) and vegan squalene oil (one of the most effective and powerful moisturizing ingredients currently known!  Because it mimics the body’s own natural moisturizers, it can penetrate the skin well and is absorbed quickly.)   And you also have the option of adding vitamin C serum to your oil blend (reduces signs of aging and is especially wonderful for eliminating sun spots or other skin discolorations.  This vitamin C serum has an infusion of enriched organic aloe and jojoba oils to provide additional healing and hydration for your skin.  These unleash powerful antioxidants while preventing the formation of free radicals which contribute to signs of aging.)

Concrete Walls Model: Katie Johnson© Sarah Allegra, sarahallegra.com

Concrete Walls
Model: Katie Johnson© Sarah Allegra, sarahallegra.com

 

So, there you go!  Now go have fun shopping!  🙂  If you choose to purchase anything from the places listed in this post, thank you very much!

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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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It’s time for all those end-of-the-year blog posts!  I admit, I kind of like this tradition.  It’s a nice way to look back on things from a larger perspective.  And I have a brand new DreamWorld image featuring Travis Weinand for those who want to just scroll to the bottom 🙂

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

* * * * *

2015 was a… challenging year, to say the least.  And it turns out I’m starting it with a fresh, new cold and fever.  It has been the worst year I’ve had, ME-wise, so far.  It didn’t help that the year began with a crunched-for-time move of houses which literally took me several months to recover from.  Medication changes gave me months of terrible headaches and migraines, which also meant that this year was the least photographically productive year I’ve had yet also.  Between feeling terrible physically and not having nearly as much access to my art therapy as I wanted, it was a very depressing, frustrating and emotionally trying year as well.  All said, I’m happy to leave 2015 behind me and have set my intentions to have a much more fulfilling 2016.

I made a short video about my experience living with ME for last year’s May 12th (ME Awareness Day).  I generally really dislike making videos, so you can see that this was important to me 😉

There was some drama in the larger world of ME as well.  The US officially changed its name from the very belittling “Chronic Fatigue Syndrome” to the vague and incredibly widely-defined “Systemic Exertion Intolerance Disease.”  Most patients and advocates were very unhappy about this and there was a big backlash, which the powers-that-be mostly ignored, as is their usual method of dealing with us.  I’m still calling it ME, which is what most of us wanted it to be changed to.

Silenced © Sarah Allegra - model: Travis Weinand

Silenced © Sarah Allegra – model: Travis Weinand

Then the Senate rubbed salt in the wound by proposing they slash ME’s funding to absolutely $0 per year.  The paltry amount we currently get is the same amount given to research hayfever, despite ME being as deadly and serious as congestive heart failure and HIV/AIDS.  I extolled people to write to their representatives in protest of this; we’ll see what comes of it.

Please save this graphic and send it to the email addresses above!

Please save this graphic and send it to the email addresses above!

I got to meet fan-turned-model-turned-friend Noemi Regalado and photograph her for DreamWorld.

Apprenticeship © Sarah Allegra, model Noemi Regalado

Apprenticeship © Sarah Allegra, model Noemi Regalado

I officially started a series dealing with mental health issues; Eternal Storms.  It seeks to help break down the stigma associated with these illnesses and show sufferers how they are not alone.

A Cry From The Darkness © Sarah Allegra - a self portrait

A Cry From The Darkness © Sarah Allegra – a self portrait

One of the first models I ever worked with, Dedeker Winston, who has continued modeling for me over the five years we’ve known each other, despite me forcing her to wake up early, pose laying in cold, slimy, creeks, regularly get naked in forests and once helping me discover what stinging nettles look like when I accidentally had her pose nude in a patch of them, left for an extended time abroad.  She is having a wonderful, life-expanding time and I’m able to keep in touch and follow her journey online and through social media and texts.  I was sad to see her leave, but glad that we’d gotten in as much shooting as we did before she left, such as the Pink Mother for DreamWorld.  Speaking unselfishly though, I’m really happy she had this chance to do so much traveling and is having such an incredible time!  But I won’t be sad when I have the chance to photograph her again 🙂

The Living Sepulcher © Sarah Allegra, model - Dedeker Winston

The Living Sepulcher © Sarah Allegra, model – Dedeker Winston

My dear friend Danica gave me a priceless chance to work with an incredible, stunning, cream-colored Gypsy Vanner stallion named Booger.  As soon as I discovered she was horse-sitting him, I began planning a shoot with Katie Johnson and him together, utilizing him in every way I could think of.  I have a LOT of his shots still on my hard drive waiting to be edited, but I did at least complete one image from that magical shoot!

Safely Through The Shadows © Sarah Allegra, model - Katie Johnson

Safely Through The Shadows © Sarah Allegra, model – Katie Johnson

I tried my hand at a more editorial style, which is fun, but not going to be the main thing I do any time soon.

Wall 8- model: Travis Weinand. © Sarah Allegra

Wall 8- model: Travis Weinand. © Sarah Allegra

Alabaster 1 - model Dedeker Winston. © Sarah Allegra SarahAllegra.com

Alabaster 1 – model Dedeker Winston. © Sarah Allegra
SarahAllegra.com

I was accepted into the online art gallery A Gallery, and also participated in a group show over the summer at the Creative Arts Group.

The summer show at the Creative Arts Group Gallery in Sierra Madre. This is how I want my work to be displayed, finished works alongside actual props and costumes.

The summer show at the Creative Arts Group Gallery in Sierra Madre. This is how I want my work to be displayed, finished works alongside actual props and costumes.

I FINALLY finished editing an image I started in 2013.

A Poisoned Sleep Of Kissless Dreams © Sarah Allegra - model: Katie Johnson

A Poisoned Sleep Of Kissless Dreams © Sarah Allegra – model: Katie Johnson

I was able to attend another screening of The Last Unicorn, which was absolutely delightful!  I dressed up as Amalthea and made a taco purse (get your own here!), which I think was the secret behind me winning the nightly costume contest.  I was also able to introduce my dear friends and ex-neighbors Donna and John to the movie for the first time (though I’d already made them fans of Peter’s writing) and they were appropriately impressed.

Taco purse available on Etsy :)

Taco purse available on Etsy 🙂

At the screening as Amalthea (with purse) and back at home.

At the screening as Amalthea (with purse) and back at home.

Sadly, shortly after this screening it became clear that Peter Beagle is not nearly as well as everyone had thought.  This is leading to a number of problems for him and his manager/publisher Conlan Press, which I’ll leave to them to discuss.  Regardless, it is sad to see him unwell and it makes the conversation I had with him at the screening last January all the more precious.

Speaking of illness, one of my favorite photographers, Ashley Lebedev, let us all know that she has struggled with a chronic illness for a long time.  It was beautiful to see people’s support and desire to help her gather funds for treatment.  I wish her a much better, healthier 2016 also!

The Weight of a Whistle Already Carved, @ Ashley Lebedev

I helped my husband (he helps me SO much with my shooting and projects, I more than owe him!) with a project that he’s been working on for a long time, which ended in his creating the dystopian, sci fi, 8-minute short film A Secret War.  You really should watch it!

My friend Jessi started an Etsy shop which has beautiful jewelry in it!  But it’s not simply pretty, much of it helps raise awareness about various invisible, chronic illnesses, such as ME.  As a spoonie herself, purchasing her jewelry is helping her support herself as well as getting something pretty 🙂

Jessi’s shop, The Hopeful Spoon

I discovered the wonder that is the film Unbroken, which is now one of my go-to stories to tell myself when I need some extra motivation to get through anything difficult.

Speaking of Peter S Beagle, Amazon released an exclusive Kindle offering of 13 of his most beloved titles for the first time in e-editions… and 6 of those titles were released with my images on their covers!  To say I was elated would be a huge understatement.  There may have been joyful tears when I first saw them in my browser window.  🙂

Go buy one of these titles! You'll thank me when you discover how magical Peter's writing is :)

Go buy one of these titles! You’ll thank me when you discover how magical Peter’s writing is 🙂

And, as always, I put out a calendar with a year’s worth of beautiful images to brighten up your walls every day!  Red Bubble does an excellent job at making beautiful, high-quality items and its calendars don’t disappoint.  Feel free to grab your own; I can promise that you’ll love it!

Sarah Allegra 2016 Calendar

Sarah Allegra 2016 Calendar

* * * * *

Since 2015 was so heavy with ME, migraines, frequent colds, injuries, deep ruts of depression and stress in ways I have seldom experienced it, an incredibly huge percentage of my physical energy was devoted to simply existing and not giving up.  It really underscored how precious my time and energy is and how I need to devote it to things that are worthwhile.  No, not just worthwhile, but things which I cannot live life without.  The things are dearest and most deeply important to me.

This has given me a lot to think about as I ponder how I’ll change my management of time and energy in 2016.  I will try and devote myself to not just ideas I like, but the ideas which I think are the best.  The most important.  I simply don’t have time to pursue anything less.  This is helping to bring my artistic goals into much sharper focus.  The dross will be burned away; the leftover gold burnished until it gleams.

I’m also making an effort to set aside more time for self-care activities, like short walks with Calantha or yoga when my body allows, meditation and reading for pleasure.  Few things enrich my life (both my actual and imaginary worlds) as much as reading does and I need to make sure I don’t let that slip away from me by being “too busy” for it.

But of course the most important things are the relationships I have with friends and loved ones.  Those will always be tended to, nurtured and cultivated as best as I can manage!  I am blessed to have many, wonderful friends in my life, online and off, who get me, support me and my art and are incredibly gracious about my health problem.  That’s something I should never forget to be grateful for or take for granted.

* * * * *

Now, as promised, here is my new DreamWorld image!

When I first met model and friend Travis Weinand, I was struck by how truly ethereal he looks.  Not simply in pictures or when in costume, he always looks like he stepped out of a comic book, collection of mythology or possibly Middle Earth.  With a quick stop-off for a dose of Viking and tattoos.  Anyway, I immediately wanted him to have wings.  I wasn’t sure how, but I knew he’d get them before we were done working together.

So at our next shoot, I asked him to sit in front of a dark backdrop and pose angelically.  He made looking strong, gentle, loving and bad-ass all at the same time look effortless.  Editing did take a while since I painted the wings myself and had to figure out exactly how I wanted these “wings made out of light” to look, but it was very worth the effort!

This character lives in DreamWorld, as you would probably guess, a centurion of sorts to DreamWorld’s Queen (whom you have not met yet, but hopefully you will soon).  He leads the Queen’s army, the Glorious Guard, but he’s more than just a devoted servant.  Part bodyguard, part lieutenant, part enforcer, part adviser, he is a dazzling embodiment of good.

The title of this image comes from one of my favorite poems of George Gordon Lord Byron, All For Love.  In it, Byron discusses love being the greatest glory one can receive, far greater than wreaths, trophies or other symbols of glory:

O Fame! if I e’er took delight in thy praises,
‘Twas less for the sake of thy high-sounding phrases,
Than to see the bright eyes of the dear one discover
She thought that I was not unworthy to love her.
 
There chiefly I sought thee, there only I found thee;
Her glance was the best of the rays that surround thee;
When it sparkled o’er aught that was bright in my story,
I knew it was love, and I felt it was glory.

That last line kept repeating and repeating through my head as I edited… thinking about the love he has for his Queen, those he protects and his glorious vestige, so I finally gave in and just used it as the title.

 

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

I Felt It Was Glory, model: Travis Weinand. © Sarah Allegra

 

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

 

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

I Felt It Was Glory, detail. Model: Travis Weinand. © Sarah Allegra

That’s it!  Everyone have a happy and meaningful 2016!  🙂

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I promised you photos from my opening reception at the Creative Arts Group opening reception and here they are!

Of course I got all caught up experiencing the show to remember to take photos once it really got going, so mostly I have photos of the exhibit itself and a few from Geoff.

IMG_1473IMG_1474We had a pretty good turn-out!  And luckily for my anxiety, I knew most of the people who came fairly well which made it much easier on me.

IMG_1475IMG_1476People seemed to really enjoy getting to see the props and costumes up close and realize they really weren’t Photoshopped.  Not, of course, that there’s anything wrong with using Photoshop, I certainly do, frequently and heavily to make the impossible possible, but when I’ve put month and months of work into something, it’s an important distinction.

IMG_1480

Me with the dress and flower footprints from Spring’s Awakening – and my awesome, retro-deer-print dress

IMG_1373IMG_1477

Antlers from Where Black Stars Rise

Antlers from Where Black Stars Rise

Chest piece from Where Black Stars Rise

Chest piece from Where Black Stars Rise

Our old neighbors, Donna and John, showed up, which was really lovely.  It’s been hard on everyone to have suddenly gone from seeing each other every day to every few weeks, so it was great to be able to have them hang out for a little while and gossip about really important topics like Game of Thrones.

John, me and Donna

John, me and Donna

I was completely exhausted afterward and crashed very hard the next day… and a couple after that too.  But it was good to have had the reception and I’m glad it happened, even if I paid for it later.

IMG_1488Maynard crawled up on me after I got home and laid on my chest, giving me sweet little kitty kisses.  I took a photo because he was being so adorable and also to document the fact that I DO still know how to apply makeup, I just don’t bother expending energy on it regularly 😉  I have better things to do with the precious little I have.

It’s been a little while since I posted a new image, and part of that is because I’ve been hard at work getting ready for the show, then recovering, then I was helping Geoff with a really fantastic short film he made.  Are you a sci fi fan?  Like stories about dystopian futures?  Give it a view!  It’s a really cool, original concept which I’m proud to have my name attached to.

Frontiers posterNow… on to my new image!

My good friend Danica is a horse trainer and I discovered she had a cream-colored gypsy vanner stallion named Booger staying with her for a few weeks.  Booger was only going to be with her for a short time, so I quickly rallied Katie and got a shoot scheduled.  Booger perfectly fit a series of images I’ve been wanting to shoot for years, but they required not only a horse, but an extremely specific-looking horse.  Luckily, Booger fit the bill!

Those images will be coming later.  For the mean time, I wanted to make as much use of him as possible, so we shot quite a few concepts.  This one was Katie’s idea, sort of a companion piece to this self portrait I shot, also on a horse (Freddie, who is extremely laid-back) belonging to Danica:

Where Dreams And Shadows Lie © Sarah Allegra

Where Dreams And Shadows Lie © Sarah Allegra

Booger did such a good job!  He’s only about two, a baby in horse years, and he had never modeled before.  It required a lot of fast thinking, re-adjusting and everyone being on their toes, but we got some really wonderful shots!  This is just the first of several which you’ll see; the others will be released as I get to them.

Thanks to Katie and Danica (who really did an incredible job of wrangling an untrained young stallion into doing the weird things we were asking of him), Booger’s owner for letting us photograph him, and especially to Booger for being such a great first-time model!  Many smooches and apples to you, my friend 🙂

Safely Through The Shadows © Sarah Allegra, model - Katie Johnson

Safely Through The Shadows © Sarah Allegra, model – Katie Johnson

Safely Through The Shadows © Sarah Allegra, model - Katie Johnson - detail

Safely Through The Shadows © Sarah Allegra, model – Katie Johnson – detail

Safely Through The Shadows © Sarah Allegra, model - Katie Johnson - detail

Safely Through The Shadows © Sarah Allegra, model – Katie Johnson – detail

Safely Through The Shadows © Sarah Allegra, model - Katie Johnson - detail.  Look at those feathery legs!!  :D

Safely Through The Shadows © Sarah Allegra, model – Katie Johnson – detail

Safely Through The Shadows © Sarah Allegra, model - Katie Johnson - detail

Safely Through The Shadows © Sarah Allegra, model – Katie Johnson – detail

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Wall 1- © Sarah Allegra

Wall 1- © Sarah Allegra

Though I’m very happy calling myself a fine art, conceptual photographer, it’s fun now and then to stretch outside of your comfort zone.  I would never consider myself a fashion or editorial photographer, but when I started working with Travis Weinand, he had a looked that just screamed “FASHION/EDITORIAL” to me, so I decided to give it a go.

Wall 2- © Sarah Allegra

Wall 2- © Sarah Allegra

And you know what?  It was fun!  It was nice to do something different, and something which didn’t require 20+ hours of editing for each image.  As I made my editing selections, I just had a gut feeling that they should be black and white.

Wall 3 - © Sarah Allegra

Wall 3 – © Sarah Allegra

I very, very rarely shoot anything that’s black and white, but, as with most of my art, I listened to my instincts.  And I love how they look!

Wall 4- © Sarah Allegra

Wall 4- © Sarah Allegra

Travis is so easy to work with and friendly, despite how he can look quite intimidating at 6′ 5″, very muscular, an American Ninja Warrior alumni, and beautifully adorned with tattoos.

Wall 5- © Sarah Allegra

Wall 5- © Sarah Allegra

He does moody and deeply thoughtful looks well, but I was also pleased to have captured several shots with him being a bit more natural; an easy grin and laughing.

Wall 6- © Sarah Allegra

Wall 6- © Sarah Allegra

It turns out that we have a shared love of Norse mythology and I’m a little jealous that Travis actually has some Norse ancestry.

Wall 7- © Sarah Allegra

Wall 7- © Sarah Allegra

I gave the images just a tiny touch of viking by braiding Travis’s hair; nothing terribly complicated, but he wore it well!

Wall 8- © Sarah Allegra

Wall 8- © Sarah Allegra

Thanks, Travis, for being such a good sport and easy to work with!  Not a lot of guys would say “sure!” when I asked if I could braid their hair 😉

Wall 9- © Sarah Allegra

Wall 9- © Sarah Allegra

I’d be interested in hearing which images are your favorites!  Feel free to let me know in a comment 🙂

Wall 10- © Sarah Allegra

Wall 10- © Sarah Allegra

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I have had this image in my head for about four or five years and the timing was just never quite right for it.  Thankfully, since I’ve been working with the multi-talented Travis Weinand, I had the chance to do it the way I’d been picturing it for so long!

Are you all familiar with the Tiananmen Square Massacre in 1989?  I’ll give you a rough summary of events.  Some of the details still remain repressed though, such as the number of people actually killed, but I’ll do my best.

In April of 1989, the death of Hu Yaobang, the former Communist Party General Secretary triggered massive protests calling for political reform.  The protests began peacefully and were led mostly by university students, who gathered in Tiananmen Square to mourn and protest.  This went on for several weeks and some of the students took to hunger strikes to express their desire for reform.  Since the entire incident has been so thoroughly repressed, it’s hard to get an inside take on what was happening in the minds of the Chinese government – you can’t very well ask about an event which never officially happened.

However, after the protests went on for weeks and showed no signs of slowing, Chinese leaders decided force was called for to disperse the protesters.  Marshall law was declared, approximately 250,000 troops were sent in; given permission to use lethal force if necessary.

And, as is so often the case, once lethal force has been approved, means for using it will be found.

By June 5th, the heavily outnumbered and out-armed protesters had been largely slaughtered.  Exact numbers remain unknown; official records report 200-300 died; earlier reports fro the Chinese Red Cross on the morning of the 4th recorded 2,600 deaths, which was later retracted.  Regardless, the students stood no chance against an armed and deadly militia with orders to make them go away, whatever it took.

And then we come to June 5th.

After weeks of unrest leading to a brutally bloody and deadly fever pitch, by the 5th, one man, at least, had had enough.  As the tanks came rolling into the square to continue to get rid of the protestors, one man made his stand in a way which still shocks and awes people today.

With nothing more than a few shopping bags in his hands, he stood in the tanks’ path and forced them to stop.  The tanks tried to maneuver around him, he stepped back in front of them.  After the massacre he had surely witnessed over the past several days, this goes beyond mere heroism.  This was fearlessness.  He was angry, and no matter that the tanks could have kept rolling and ran him over, or they could have chosen to shoot him as soon as he came into view, he stood.  And for minutes, a single man stopped an entire line of tanks.

At one point he even climbs on top of the tank, bangs on it and demands to speak to the person in charge.  After a few minutes, a group of people, who seem to be protesters also, join him and hustle him out of the way, probably fearing, with good reason, for his life.

No one knows who this man is.  The world has called him Tank Man, a fitting name.  We don’t know what happened to him.  Was he arrested, was he killed, or did he simply never know the incredible impact his act of sheer bravery had on the world?  With the extend to which the massacre has been suppressed in China, it’s quite possible he never knew his act was recorded or that it became famous.  I would love to know what happened to him, but so far no one has come forward claiming to be Tank Man or knowing who he is.

One man against a line of tanks.  He knew the events of the days before and how deadly the protests had become.  He knew that he would likely be shot or run over.

But his one act of peaceful, quiet defiance stopped an army.

That is what I wanted to celebrate in my image with Travis.  I wrapped a mantle of white flowers around his shoulders, both to symbolize purity and peace, which we typically associate them with in America, and also for its association with death in the Chinese culture.  I instructed Travis to be quietly, peacefully strong, but unshakeable, and rolled up a piece of craft foam into a tube to shoot the image through, as if you were looking down the barrel of the tank at him.  I climbed a ladder to get a view where I’d be higher up than Travis (not as easy as you’d think since he’s so tall and I’m so short!) and shot away.  Travis perfectly embodied the exact emotion and look that I’d asked for.  It doesn’t get better than that.

I hope that Tank Man is alive and well.  I hope that he knows the impact his defiance had on the world.  I hope we discover some day who he is.  Until then, he will be Tank Man, the many who stopped an army.

Tank Man © Sarah Allegra

Tank Man © Sarah Allegra

Tank Man © Sarah Allegra - detail

Tank Man © Sarah Allegra – detail

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On February 10th, the Institute of Medicine released the findings of a report it had been working on for approximately a year and spent over a million dollars on.  Their task: come up with new diagnostic guidelines for patients with myalgic encephalomyalitis/Chronic Fatigue Syndrome and decide on a new, single name to replace both ME and CFS, which are generally used interchangeably for the same disease.*  Considering that ME/CFS gets only a pitiful three million dollars in government funding per year (which may sound like a lot, but consider that male pattern baldness, which is not life-threatening, gets $16 million, and you realize how very, very little that is), this is a cost we cannot afford.

Silenced © Sarah Allegra, model Travis Weinand Read on for the full image!

Silenced © Sarah Allegra, model Travis Weinand
Read on for the full image!

The IOM’s findings are so upsetting to me, I can hardly organize my thoughts into rational sentences.  But while I may want to sob and punch a hole through the wall (which, let’s face it, I’m probably not strong enough to do anymore), I need to speak up about these incredibly vital points and I need to do so in a way that other people won’t dismiss me as merely a “hysterical woman.”

I’m going to be generous here for a minute; here are the few good things gleaned from the IOM’s 304-page report.

  • They recommend retiring the trivializing name “Chronic Fatigue Syndrome.”  I fully agree with that.  I could not agree with that more.
  • They admit that far more research needs to be done to understand ME/CFS.
  • They admit that ME/CFS is a real and physical disease.
  • They recommend that the Department of Health and Human Services should develop new, more accurate ways of diagnosing ME/CFS.

For about half a second, I was happy when I heard the IOM recommended changing the name of “Chronic Fatigue Syndrome” to what they’ve proposed: “Systemic Exertion Intolerance Disease.”  Mostly I was happy because I saw the word “disease” instead of “syndrome.”  And I will, begrudgingly, admit that their SEID is ever-so-slightly better than CFS.  If CFS is a kick in the balls, SEID is a kidney punch.  Neither is good, but I suppose if i were given the choice between the two (and I were male) I might choose the kidney punch.

Inside Looking Out © Sarah Allegra - model: Katie Johnson

Inside Looking Out © Sarah Allegra – model: Katie Johnson

Here’s what’s wrong with SEID.

The IOM complained that the name “Chronic Fatigue Syndrome” is demeaning and only focuses on one symptom.  Those are both true.  They also decided that “myalgic encephalomyalitis” was unsuitable because it also only focused on one symptom.  That is not true.  “Myalgic encephalomyalitis” literally means “muscle pain and inflammation of the brain.”  You have two symptoms being named, both of which are hallmarks of the disease and which have tons and tons of scientific proof backing them up, as well as patients’ own experiences aligning with them.  Additionally, more documentation can be found in the UK documentary Voices From The Shadows where multiple autopsies of patients who died from ME/CFS all showed inflammation in the same area of their brains.  Despite mountains of evidence to the contrary, the IOM decided that while nearly every person diagnosed with ME/CFS complains of chronic pain, that was not a general symptom for ME/CFS patients, and thus should be excluded from the name.

I know a lot of people with ME/CFS.  We are a close community as this disease ravages us in ways only other sufferers can truly understand.  We form deep online friendships since we are so often unable to interact with people in meaningful ways in the real world.  We rely on each other for advice about treatments and medications, as we almost always know more about our disease than our doctors do.  None of my doctors had ever even heard the name “myalgic encephalomyelitis” until I said it to them.  We are our own biggest support system.  And I do not know a single person with ME/CFS who does not experience chronic pain.  Personally, I have not had a pain-free day in over seven years.  To have healthy outsiders negate the 2,555+ days of pain I’ve experienced and say it’s not an important symptom is beyond a slap in the face.

A Fading Girl © Sarah Allegra - model: Brooke Shaden

A Fading Girl © Sarah Allegra – model: Brooke Shaden

But even those slights aside, “Systemic Exertion Intolerance Disease” fails their own test by simply naming only one of our other common symptoms; exertion intolerance.

Exertion intolerance is a very real thing for ME/CFS people.  And it doesn’t have to be physical exertion; mental or emotional exertions can leave us just as sick for days, or weeks, sometimes months… or forever, as physical ones.  For years and years, doctors have been advising us to exercise our disease away.  And for many illnesses, exercise does help.  But with ME/CFS, exercise can be absolutely deadly.  Push yourself too hard and you can make yourself house-bound or bed-bound… sometimes for the rest of your life.

We walk a knife’s edge every day, trying to judge what we can and cannot do.  It’s generally considered a fairly good idea within the ME/CFS community to try and remain as active as you can without overdoing it and making yourself worse.  It’s like playing a very stupid game of blackjack with your energy each day.  You don’t want to lose any ability to be active that you do have, but even hitting 21.01 could mean a week of being stuck in bed.  It’s a serious and deadly game we are forced to play every single day.

So yes, exertion intolerance is a very real and dire threat, but even given that, we’re still left with a name which merely cites one of our symptoms again.  And as I said, SEID is ever-so-slightly better than CFS simply because of trading out the word “symptom” with “disease.”  Laymen hear “syndrome” and it doesn’t sound serious; replace it with “disease” and their view shifts.  I have serious doubts that busy doctors, who have no time to read a 304-page document, will hear anything but “exercise avoidance” in place of “exertion intolerance.”  After all, exercise is a cure-all!  There’s nothing it doesn’t help!  That’s the mantra they’ve been taught again and again and it will take very dramatic events to undo those decades of conditioning.

Vanity's Muder © Sarah Allegra - a self portrait after I started experiencing ME-related hair loss

Vanity’s Muder © Sarah Allegra – a self portrait I created after starting to experience ME-related hair loss

Almost every ME/CFS sufferer I know has had at least one doctor who refused to believe there was anything physically wrong with them.  I had one of those too.  Mine decided I was simply depressed and anxious.  In a way, she was right; I was getting very depressed because I felt terrible every single day and nothing was helping it, and I was becoming increasingly anxious about my appointments with her because I was sensing she didn’t believe me.  I have experienced clinical depression.  There was one solid month in a very dark period of my life where I had to rationalize not killing myself every single day.  I know what depression looks and feels like.  It is a completely different beast than ME/CFS.

It’s like saying sharks and bears are the same threat.  Well, no, one lives in the water and generally attacks you if he mistakes you for a seal; the other lives in the woods and might attack you if she thinks you’re a threat to her cubs…  You get the picture.  Both can kill you, but trying to issue a blanket statement that they are both the same threat, coming from the same place, using the same methods to avoid them would be absurd.

The Blue Ribbon © Sarah Allegra - Model: Katie Johnson

The Blue Ribbon © Sarah Allegra – Model: Katie Johnson

ME/CFS is not “just” depression.  I put “just” in quotes because I know how serious depression can be and I never want to be dismissive of it.  It kills too.  But they are completely separate entities.  There is a tendency for people who have ME/CFS to become depressed because they have ME/CFS, but that does not mean they are one and the same.  Almost anyone with a chronic, incurable illness is going to get depressed.  You never hear people accusing cancer patients that the cancer is all in their heads; they’re just depressed and if they went for a nice jog, everything would be fine!

And lest you think I am fear-mongering and making ME/CFS out to be more than it is, let me remind you of a quote by Dr. Nancy G. Klimas, who specializes in treating both HIV/AIDS patients along with ME/CFS patients.  In 2009, she was quoted with the following: “…But I hope you are not saying that C.F.S patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.  I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”

The overwhelming majority of ME/CFS patients would have liked to have had our name officially changed to “myalgic encephalomyelitis.”  We made our preferences known loudly during the entire time the IOM worked.  ME is, after all, what most of the modern world calls it.  It was only because of one insidious man that the United States switched to “Chronic Fatigue Syndrome.”  And why was such a name invented?  To create a legal loophole where insurance companies would be able to deny sufferers coverage.  The schism between the United State’s naming of the disease and the rest of the world began with greed from insurance companies.  These are your US tax dollars at work.

And what’s even worse is that there is speculation that the IOM is intentionally confusing the issues around ME/CFS; making the definition unusably broad, ignoring patients’ wants and needs.  Once again, making sure we’re worse off than we were before they came along.

Breakable © Sarah Allegra - a self portrait

Breakable © Sarah Allegra – a self portrait

The second of the IOM’s tasks, coming up with a diagnostic criteria for ME/CFS, was also unnecessary.  Two excellent, specific and scientific definitions already exist (and are used by most of the modern world as well.)  It was loudly advocated by ME/CFS patients and specialists alike that the IOM adopt these guidelines.  In fact, 50 of the world’s leading ME/CFS experts sent letters asking that the IOM’s contract be canceled along with countless letters written and petitions signed by patients.

That brings up another salient point… who are these people chosen by the IOM for this heavy and delicate task, ripe with repercussions which will ripple through the decades?  They are 15 people, only seven of whom specialize in ME/CFS in any way.  Some are not even doctors.  How is this at all ok?  How was it allowed that a group of people who don’t have anything to do with the disease at hand would be asked to redefine it?

Let’s give them the benefit of doubt for a moment and assume they’ll really try and do a good job.  Who knows.  What did they come up with?  They decided that to be diagnosed with ME/CFS, you need only three of the following core symptoms:

  1. A substantial reduction or impairment in the ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by fatigue – which is often profound – of new or definite onset, not the result of ongoing excessive exertion and not substantially alleviated by rest.
  2. The worsening of patients’ symptoms after any type of exertion – such as physical, cognitive, or emotional stress – known as post-exertional malaise.
  3. Unrefreshing sleep.

And at least one of the two symptoms is also required:

  1. Cognitive impairment.
  2. The inability to remain upright with symptoms that improve when lying down – known as orthostatic intolerance.

Do you know how many diseases and conditions fall under this umbrella?  It’s so broad, it’s utterly useless.  You wouldn’t even need to have a physical ailment to qualify for ME/CFS.  This is a big deal.  If this new standard is adopted, this is the criteria that will be used to find patients to test new drugs and treatments.  Can you imagine how murky and confusing the results will be if your patients could potentially have almost any disease?  Answers will never be found under these guidelines.

In Between Awake and Sleep © Sarah Allegra - a self portrait

In Between Awake and Sleep © Sarah Allegra – a self portrait

As people online have pointed out, SEID backwards spells DIES.  And it’s hard to feel like that isn’t exactly what the IOM, HHS and CDC want us to do.  We are an embarrassment to them because they don’t know what our disease is, what causes it or how to fix it… and, of course, a great deal of that confusion was created intentionally; a fact they’re desperate for us to forget.  They would rather sweep us under the rug, ignore us, talk over us.  And sadly, that is very easy for them to do.  With so many patients house- and bed-bound, it’s extremely difficult to show our numbers, organize protests, or object to our treatment in any meaningful ways.

But this is what they haven’t counted on.

When you are backed into a corner by illness, you can either crumple under it or develop a steel core in the deepest part of your soul to bear it.  Some days you may flip back and forth between the two, but ultimately, your will strengthens.  The stakes are personal to us and they are very high.  Though it might take the help of our caretakers or cost us a week of energy or send us back to bed for months, we will not be silenced again.  Shifty, snakey policy-makers may have the energy and money we don’t, but they do not have this core to draw on.

We will fight.  And we will win.

Silenced © Sarah Allegra - model: Travis Weinand

Silenced © Sarah Allegra – model: Travis Weinand

Are you pissed off?  Good.  We need you to be pissed off.  We need a public outcry so loud that it simply can’t be ignored.  And we need the healthy, compassionate people of the world to join us in demanding change.

Here are some things you can do:

Pass around the image above, Silenced, on your social media platforms.  Linking to this post would be helpful!  I am giving you permission to use the Silenced image to help get our message across!  Put it on Facebook, Twitter, Instagram, Tumblr, Pinterest… wherever you hangout online!  The more people who see it and become aware of the problem, the better!

Tweet to @TheIOM, @HHSgov and @CDCgov letting them know your displeasure in the proposed name change.  We DO have the power to stop this from becoming our reality!  Please use the hashtag #MENotSEID.  Not sure what to say?  Here are a couple examples you are free to use!

.  : ME/CFS research will be useless with the name SEID.

.  : SEID is still only naming a single symptom.

.  : ME/CFS patients will not be helped by SEID, it will only hurt us further.

.  : MECFS patients reject SEID and demand the name ME!

.  : Why are we spending a million dollars redefining and renaming what doesn’t need it?

.  : ME/CFS patients WILL NOT be bullied into silence over the proposed name SEID.

Additionally, you can:

Submit answers to a survey about what you think of the IOM’s proposed name change.

Sign this petition to stop the HHS-IOM contract and accept the CCC [Canadian Consensus Criteria] definition of M.E.

Or this petition!

Every voice counts!

 

Would you also like to support me in my quest to continue making art in spite of ME’s constant presence in my life?  How lovely of you!  🙂  I have added the new Silenced image to my RedBubble shop as well as my Etsy store; you can get it (or most other images) as museum-quality prints, tshirt, stickers, covers for your phones and i-Devices, travel mugs, blank greeting cards, even pillows and tote bags!  Every purchase goes toward helping me continue to produce new art as well as spend the countless hours necessary to delve into issues like this post.  And every single purchase is hugely appreciated!

We Rise Again © Sarah Allegra - a self portrait

We Rise Again © Sarah Allegra – a self portrait

Images are from my Enchanted Sleep series, which portrays living with ME/CFS/fibro.**

Istagrammers!  Here is a square version of the image, already Instagram-friendly 🙂

Silenced © Sarah Allegra - model: Travis Weinand

Silenced © Sarah Allegra – model: Travis Weinand

*When you dig into it, no, ME and CFS are not describing the same disease, mainly because the current US diagnostic guidelines for CFS are so sloppy and wide-open.  Further information on the subject can be found here, along with countless other places online.  Since there is a lot to talk about in this post as is, for brevity’s sake, I’m using the term people are most familiar with, ME/CFS, though the definition I have in mind is the CCC and ICC definition of ME.

**Fibromyalgia is, for the most part, also used interchangeably with ME/CFS in the US.  This is not entirely accurate, much like ME and CFS are not really the same thing, but for the sake this post, when I talk about ME or CFS, I am also talking about fibro.

 

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