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Posts Tagged ‘eyes’

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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Before I get into this post, I wanted to again thank EVERYONE who prayed, lit candles, sent me good thoughts and energy about my battle on Wednesday.  I don’t have an answer yet, and most likely won’t for a while, but it did go quite a bit better than I was expecting.  I am guardedly hopeful for a successful outcome.  And regardless, I went in, faced a terrifying situation and did my best.  Whatever happens, I can take comfort in that.  So thank you all, from the bottom of my heart; I’m sure all that good energy truly helped.  For those inclined, I wouldn’t mind your continued blessings until I hear the outcome!  And I’ll try and let you know what the outcome is as soon as I can.

Now, on to this post!

Conlan Banner

I’ve had some exciting news that I’ve been quiet about for a while, but I can finally spill the beans today!  You guys all remember how I’ve been working with Connor Cochran from Conlan Press, publisher of Peter S. Beagle, one of my two literary heroes?  It’s all coming together 🙂

LILA THE WEREWOLF AND OTHER TALES by Peter S. Beagle. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text combines 6 classic Peter S. Beagle stories with 10 new ones collected here for the first time. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Click here to be taken to Amazon!

LILA THE WEREWOLF AND OTHER TALES by Peter S. Beagle. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text combines 6 classic Peter S. Beagle stories with 10 new ones collected here for the first time. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Click here to be taken to Amazon!

Amazon is releasing an exclusive bundle of 13 of Peter’s books, in e-book editions for the first time ever!  As of the time of this writing, you can go to Amazon and pre-order as many titles as you’d like!  They officially go on sale on November 1st, but you can make sure you’re first in line to get your digital hands on them.

THE LINE BETWEEN by Peter S. Beagle. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text of Peter's 2006 story collection. Cover photo by Sarah Allegra Ashley, processing and design by Connor Cochran. Model: Katie Johnson. Click here to be taken to Amazon!

THE LINE BETWEEN by Peter S. Beagle. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text of Peter’s 2006 story collection. Cover photo by Sarah Allegra Ashley, processing and design by Connor Cochran. Model: Katie Johnson. Click here to be taken to Amazon!

And, the most exciting part for me is that six of these shiny new e-books have my images on their covers!!

 MIRROR KINGDOMS: THE BEST OF PETER S. BEAGLE by Peter S. Beagle, stories selected by Jonathan Strahan. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text reprinting 2010 Subterranean Press limited-edition hardcover collection. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Click here to be taken to Amazon!


MIRROR KINGDOMS: THE BEST OF PETER S. BEAGLE by Peter S. Beagle, stories selected by Jonathan Strahan. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text reprinting 2010 Subterranean Press limited-edition hardcover collection. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Click here to be taken to Amazon!

This is so incredibly fulfilling and amazing to me!  I began creating images inspired by Peter’s work long before I’d ever met him or had any personal interaction with him.  I just genuinely LOVE his work and it made me want to create images based on how his writing made me feel.  It’s a little surreal to now have my work on his covers, but absolutely wonderful 🙂

 SMÉAGOL, DÉAGOL, AND BEAGLE: ESSAYS FROM THE HEADWATERS OF MY VOICE by Peter S. Beagle. 2015 Conlan Press ebook edition (Kindle exclusive). Brand-new nonfiction by Peter -- a collection of original essays exploring the roots of his own voice as a writer, and the people and works that have been his greatest influences. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Model: Bryce Rankins. Click here to be taken to Amazon!


SMÉAGOL, DÉAGOL, AND BEAGLE: ESSAYS FROM THE HEADWATERS OF MY VOICE by Peter S. Beagle. 2015 Conlan Press ebook edition (Kindle exclusive). Brand-new nonfiction by Peter — a collection of original essays exploring the roots of his own voice as a writer, and the people and works that have been his greatest influences. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Model: Bryce Rankins. Click here to be taken to Amazon!

So please click on any of the above images to be taken to Amazon where you can see what titles are being offered and pick up your favorite ones!  And if you’re new to Peter S. Beagle… well, you’re in for a BIG treat.

 SLEIGHT OF HAND by Peter S. Beagle. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text of Peter's 2011 story collection. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Click here to be taken to Amazon!


SLEIGHT OF HAND by Peter S. Beagle. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text of Peter’s 2011 story collection. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Click here to be taken to Amazon!

If you’re liking the idea of this but don’t own an e-reader, don’t worry.  New hardcover editions of these titles will be available in the near future and the plan so far is for at least most of the covers to remain the same.

WE NEVER TALK ABOUT MY BROTHER by Peter S. Beagle. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text of Peter's 2009 story collection. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Model: Patrick Reid. Click here to be taken to Amazon!

WE NEVER TALK ABOUT MY BROTHER by Peter S. Beagle. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text of Peter’s 2009 story collection. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Model: Patrick Reid. Click here to be taken to Amazon!

Many, many thanks to Connor Cochran, Charlie Petit and Peter S. Beagle for choosing to use my images and working so hard to make the covers look so beautiful.  I am truly honored.  Thank all you, my dear readers and friends, for your support, any purchases you may make and extra special shout-out to Katie Johnson, Bryce Rankins and Patrick Reid for their modeling in their images!  We’re all on book covers!!

Did I mention I was excited about this?  🙂

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 This is a big piece for me, not just size-wise, but for what it represents as well.
Like A Storm © Sarah Allegra - detail

Like A Storm © Sarah Allegra – detail

I shot this self portrait a week or two ago after enduring months of worse-than-usual depression.  Some was due to outside influences, bad news, being sick and other things that any normal, healthy person would feel depressed about.  But a lot of it was that irrational, heavy, demanding, life-draining depression that is clinical depression.  This is not feeling sad about things that you should feel sad about.  This is round-the-clock, punishing joylessness, sucking the beauty out of everything, leaving all around you colorless and meaningless.  This is clinical depression.

 

I’ve battled this beast since it first started manifesting in my early teens.  It took me some time before I learned that what I was feeling was an actual condition, a potentially solvable problem, not just a bad mood that hung around for years.  I’ve also tried more remedied to it that I can recount; anti-depressants, therapy, energy work, supplements, yoga, getting more exercise (before I had ME; over-doing exercise now could do me great harm), self-help books, seminars, journaling, art therapy… on and on and on.

 

And it still clings.

 

I decided to start a series specifically addressing mental illness; clinical depression and anxiety in particular, since those are the two I fight with most.  I manage them, sometimes it’s better, sometimes it’s worse.  Sometimes I want to just die.  I don’t know if it will ever go away completely, thus the series title Eternal Storms.

 

I identify with Eeyore from Winnie  the Pooh, with his constant dark cloud covering just him.  I’m sure that was subconsciously part of the inspiration for this piece.  When I’m going through a bout of depression, this is what it feels like to me.  A dark storm raging round my head, that only I see and feel.  It makes the idea of asking for help feel pointless; even if I break up this cloud, another will come.  And the social stigma of admitting you need help at all, let alone help with your mental health, makes it all the worse.  If I’m having a week where I have to talk myself into continuing to live each day, I can’t talk about it except for a few select, very trusted friends who have also been there, as well as my therapist.

 

I shot this self portrait as a way to work through the cloud I was under, yes, but more importantly, to directly address depression and its stigma.  Admitting you have or struggle with depression doesn’t make you weak or unworthy.  It doesn’t make you a bad person.  It doesn’t mean you’re not trying hard enough, eating right or getting enough exercise.  It just IS.  And society needs to learn to stop judging those who do manage to ask for help.

 

The alternative is that we suffer in silence with our tormentor.  And that can kill.

 

Joel Robison happened to put up an insightful blog about his own battle with depression recently, which was a happy coincidence.  I’m very glad for people like him who will stand with me and admit that yes, we have depression.  It may not make sense to you, you may not understand it, it might *gasp* make you uncomfortable, but that doesn’t mean it will go away.We are no less human that you.  We did not ask for this fight.  This is not an attention-seeking behavior.  This is real, this illness is out for blood.  This is just our fight.  This matters.  And it can be won.One storm at a time.

This series is dedicated to all the others who fight this battle with me every day.  You are all so strong and so brave.  Don’t let anyone ever tell you otherwise.

Like A Storm © Sarah Allegra

Like A Storm © Sarah Allegra – click on the image to see it full-sized on my site!

Like A Storm © Sarah Allegra - detail

Like A Storm © Sarah Allegra – detail

 

Like A Storm © Sarah Allegra - details

Like A Storm © Sarah Allegra – details

Like A Storm © Sarah Allegra - detail

Like A Storm © Sarah Allegra – 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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I believe I’ve mentioned before that I have a rather, uh, active dream life.  My nights are often filled with deeply archetypal storylines, heavy with symbolism and metaphor, which, I suppose, is probably part of why I’m drawn to creating images along the same lines.

Hold The Gate © Sarah Allegra - detail

Hold The Gate © Sarah Allegra – detail

Sometimes my dreams are quite silly upon waking, like the dream I had where I was aboard Star Trek’s Enterprise (the original show) and Spock and I had to beam down to an alien planet so I could find my gold bikini (ah la Leia, in Return of the Jedi) which we needed in order to defeat the attacking alien army (different aliens than the ones who lived on the planet my bikini was on) and save the world.  I don’t think I was ever clear on how my gold bikini would do this, but it made sense in the dream.

Sometimes my dreams are very serious and are clearly working through problems and fears, current or past.  I had a whopper of a dream a week or two ago which I’m going to tell you about, as it relates to my most recent image.

This dream was set in the world of The Hero And The Crown, by Robin McKinley, one of my very favorite books; one of those comfort-food books I turn to again and again, especially in times of trouble.  If you haven’t read it, go and do so.  I’ll wait.

I was Aerin, the heroine of the story.  Geoff was Tor, whom I was betrothed to.  We lived in Tor’s parent’s castle (which doesn’t make sense with the book, but never mind) and nobody in the entire kingdom liked or understood me.  My only friends were Tor and Talat, my horse, along with the rest of the castle’s horses.  They had an entire army of war horses who would fight in formation on their own, without the aid of any human riders.  I took great comfort in visiting the stables frequently to get away from the nastiness of all the people and be with creatures who loved me.

The great dragon Maur, easily as big as the castle and made of pure evil, had come back and was laying siege to the castle along with numerous other giant, pure-evil dragon friends of his.  We were hopelessly outnumbered and everyone knew there was really no chance of winning this battle, but we had to try.  The dragons could only attack us at night, but in this world it became fully dark at about 1 in the afternoon and stayed dark until the regular sunrise of 5-6 in the morning.  This meant each night was very long.

Interestingly, Tor already possessed the Hero’s Crown, which ought to have given him the ability to fight the dragons off, but it wasn’t working.  It held them off a little, just barely, but it wouldn’t survive another night.

I visited the stables after the first night, thanking the horses, some of whom had been greatly wounded or killed, for their bravery in battle.  Quite a lot of them were also pregnant and foals kept popping out every time I turned around.  We had a good talk and I felt encouraged after I left them.

I found Tor and told him that I had to travel back to my family’s castle to retrieve two magic rings.  If we both wore them, then we would be strong enough to vanquish the dragons.  The thing was, I could only tell Tor where I was going and why.  I had to keep it a secret from absolutely everyone else.  At the end of the dream, I was riding off on Talat to my castle to get the rings, knowing that everyone hated me because they thought I’d just deserted them when they were most in need.  Dusk was falling as Talat and I galloped along and I knew I had to really hurry to get the rings and return to Tor’s castle in time to help everyone survive.

A couple things I should point out right away; Tor’s family in the dream is NOTHING like Geoff’s actual family.  His family embodies that friendly, easy-going, pull-up-a-chair sort of Midwestern charm you always hear about.  They’re truly all wonderful people, so don’t think that that part of the dream had any resemblance to reality!  Also, as far as I know, there aren’t any large groups of people who hate me.  I suppose I could be wrong about this, but again, the dream is not representing real life in this way.

After mulling it over a lot, talking to my mom (who is especially gifted at dream interpretation), Geoff and my therapist, I came to a few conclusions.

The dragons = ME.  Now, to be fair, I actually like dragons, but my brain often uses them as a symbol for big, bad, evil things.  (It also often uses Calantha to represent my inner child in dreams, which is just full of Freudian symbolism.)  Fighting ME every day often really does feel like you’re besieged by dragons.  You’re trapped in your castle (house/body) while an unrelenting assault of badness attacks (all of my ME symptoms; pain, fatigue, etc).

I was confused about the nights being so long until I remembered something I’d said to Geoff a few days before the dream.  I had realized that most days I spend 11-12 hours a day in bed sleeping, or at least trying to sleep.  If I can get a solid 11 regularly, I feel much better, but since my sleep is so poor, I’m often trying to make up for the bad sleep, so the time spent in bed creeps up higher.  I was startled when I realized just how much time I spent every day just trying to sleep.  I’d been getting frustrated, feeling like my days were so short and there were never enough hours… and while I know that pretty much everyone feels like there aren’t enough hours in a day, I suddenly knew why it seemed like my days really were getting much shorter.

ME also really messes up your sleep.  And if you do find yourself up at 4 am, watching TV, taking a cocktail of pills to try and get back to sleep, as I often do, nights can feel especially long and lonely.

I think that the Hero’s Crown was all the stuff I’ve tried already to feel better, all of which promise to work and cure you, but none ever has.  The rings were a hope of future treatments or cures.  Going off to get them while things were most dire represented the typical path of trying a treatment, which usually involves over-exerting yourself in some way first (going to the doctor’s office, my several-times-a-year nerve-blocking injections).

I suspect that the crowd of people who disliked and misunderstood me is my fear of people not understanding that I actually am sick, even if I don’t look like it outwardly.  This is an extremely common worry from anyone with an “invisible illness;” any sort of sickness which does not manifest in outward signs.  I often feel the need to make sure new people in my life know that I have ME and have a basic understanding of what it is so that they don’t think I’m lazy, or that I just didn’t want to go to their party, or have dinner with them.  It’s a pretty big fear, to be honest.  Almost without exception, everyone who is in my life knows what my deal is and while they invite me to things, they’re all very understanding if I can’t make it, especially if I have to cancel last minute.  I really, really hate to cancel at the last minute, but sometimes your body leaves you no other choices.  The secrecy of my mission to get the rings was mirroring the invisibility of my case of ME.

As for the more pleasant things about the dream, Geoff as Tor believed me, and he also supported me even though the entire rest of the kingdom wished he wouldn’t.  That’s 100% Geoff.  He will love and support me, in a fantasy battle with dragons, or in the real world battling insurance companies.  He is a fearless protector and someone I can always count on.  I also liked that for the magic rings to work, we both needed to wear them.  I think that speaks to the importance of having someone caring for and supporting you through this stupid disease.  I can fight it on my own, but it’s a million times better to have an ally.

And lastly, the animals will always be with me.  I have had a special kinship with animals of all kinds, since before I can remember.  My dad likes to tell the story of how there used to be a couple of huge Great Danes in a house behind ours and how they would bark and bay and snarl ferociously through the small gap in the fence if they saw you.  One day I came inside and said, “You know those big dogs out there?  They’re really friendly!”  Alarmed, my dad checked to make sure I still had all my fingers, then came outside with me where he realized that the Danes were causing a fuss because they wanted attention, not because they were aggressive.  Then for a while I collected snails in a bucket and kept them as “pets,” which I believe led my parents to get my first dog because it was just so pathetic that I was gathering snails to be my friends.  Animals have always been a big part of my life, creatures I can trust and rely on, who are as unchanging and solid as a mountain.

As I was meditating on the dream, I kept being reminded of a few big scenes from the biggest battle in last season’s Game Of Thrones.  You don’t really need a lot of context for it, just that the good guys are trying to keep the very bad guys out, and they’re horribly outnumbered and outmatched.

(Sorry, YouTube won’t let you play the videos here, but if you click the little “YouTube” button near the bottom of the video screen, it will take you directly to the videos.)

It may seem silly to those who have never experienced ME, but this is what it feels like to me.  Like you’re outnumbered 1000 to 1, the other side has mammoths and giants and all you’ve got is a fairly useless sword to try and fight them all off.  There is no end in sight, and barely any hope that you’ll succeed.  This is also the way a lot of The Hero and the Crown goes, which is part of why it’s one of my favorite books.

It may sound silly to those who have never know chronic illness’s cruel touch, but I’m willing to bet that everyone who has dealt with it will understand at once.  It’s exhausting to fight an enemy every day, who you can’t see or touch.  And even more so when some people don’t believe the enemy exists.

So, as I do, I had to take a self portrait to work through my feelings on this dream.  What could be more DreamWorldy than an image inspired by an actual dream?  I can imagine this being a snippet of DreamWorld’s rich history, perhaps during the Yellow King’s grab for the throne.  I edited it with both The Hero and the Crown and Game of Thrones in mind, lending visual inspiration.

We sick will keep fighting.  We will hold the gate.

I’ll hold the gate.

Hold The Gate © Sarah Allegra

Hold The Gate © Sarah Allegra

My lighting setup for Hold The Gate:

Hold The Gate lighting setup

Hold The Gate lighting setup

My tripod it balanced on the mattress and the camera would shift slightly whenever Calantha, also on the mattress, moved.  There was just enough room between my bed, the closet and all the other things in that part of the bedroom to make this work.  Who needs a studio??  😉

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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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