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Tanks and Peace

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, 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 outnumber 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 to 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 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

Holding The Gate

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??  ;)

Medieval Octopi

As so often happens with DreamWorld, the inspiration for this set of images came close to a year ago.

The Pink Mother © Sarah Allegra

The Pink Mother series © Sarah Allegra, model: Dedeker Winston

Last summer, I had recently watched some of the BBC’s episodes of Life, their truly excellent series on all kinds of wildlife.  I was watching it while I edited other images (I rarely watch TV without doing a second activity, unless we’re talking about shows like True Detective, Breaking Bad, Boardwalk Empire, Rectify, etc, which all demand my full attention) but my editing suddenly halted when this segment came on.

I remember backing it up and watching the whole piece again, mesmerized, deeply touched and saddened by such complete, beautiful devotion from any creature to another.  As I watched it a third time, I knew a photo was going to come out of it somehow… it was resonating too deeply with me for anything else to happen.

Now, as to how the medieval elements worked themselves in… I can only give you guesses since I’m not really sure how my brain made the jump myself.  I know that part of it had to do with wanting to give her eight “tentacles” of some kind (which made its way into her hair) and wanting to give her a pouch to carry her eggs in.  For some reason, I thought of a kirtle, a medieval garment which lasted for several centuries.  The kind I was picturing were from, I believe, earlier on in the medieval period and looked more like what we might think of as over-dresses or fancy aprons.

A kirtle from a modern pattern by Burda.

A red kirtle from a modern pattern by Burda.

Researching medieval garments inevitably led to medieval hair… images like these set my brain whirling.

You can see how the braided and wrapped hair, along with beautiful headdresses leaked into my character.

As usual, I wasn’t sure how I was going to do this when I started into it.

I had a longish, dark brown wig which I’d bought very cheaply quite a while ago.  When it arrived, I realized why it had been so cheap; it was already snarled and tangled before I’d even taken it out of the package.  I halfheartedly attempted to work the same wide-tooth comb I use for my own often snarled and tangly hair and quickly realized it was a futile endeavor.  I tossed the wig into the back of the closet and mostly forgot about it.

When this project came up, I remembered it though.  Even though it poofed up like a drying poodle as I combed it, that would work in this case, since I’d be wrapping it up and looping it around.  I spent most of one afternoon just combing it out – not detangling it, mind you; there was never any hope of this wig being tangle-free.  My best hope was to get it to the point where I could separate it into eight segments.  It took all the strength in my arms and they were very unhappy with me for the next few days, but I managed to do it.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

In the meantime, I had discovered arm knitting, which I found I could do without a) using much brain power, b) quickly c) without using much muscle power and d) it had very pretty and interesting results.  The resulting squares and shapes I made from the looping yarn had such a beautiful, organic look, almost like a coral reef or some other under-sea plant/creature, that it felt completely at home with an aquatic-inspired creature.

After the combing session, I put the wig away for a day or two.  I brought it out again after my arms had regained a little strength.  Of course this also meant that it had had a couple days left completely on its own without any outside help to start tangling again, so I spent a little time re-combing it to get it back to a manageable state.  I quickly arm-knit a band of yarn which would form the circlet of my headdress and made sure it would fit.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

Then I divided it into eight more-or-less equal segments and put a hair band around each one to help keep them from getting into too much trouble.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

I put the circlet of yarn back on top of the hair and began crisscrossing the yarn (which was a beautiful, slightly metallic variegated blend of soft pinks, blues,  lavenders and silvers) over the different segments, using liberal help from my glue gun to keep everything in check.  Each segment was attached back up to the main part of the circlet after its crisscrossing was done.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

The two front, face-framing sections of hair were left for last.  I added some looping pieces of yarn between the other segments to make it more headdress-like.  The front segments got crisscrossed with their own lengths of yarn and were then attached to the very back of the circlet, forming two large loops on either side of the face, with hair tentacles hanging underneath them.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

Then was the fun part: beads!  I raided my bead stash, with an eye toward pieces from a very elaborate headdress I’d made which had recently died, spilling beads all over the floor.  I knew there were some really cool pieces which I’d used for it, so I repurposed them again in this piece.  I didn’t want it to be overwhelmingly be-jeweled and sparkly, just enough bling to make the character look a bit important; perhaps some kind of royalty.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

Moving on to her dress, I had a high-necked, sleeveless, pink chiffon dress from Ebay which I’d gotten for little more than a song.  Pink isn’t a color I’m usually drawn to that much, but since the original octopus was pink, my character was going to be pink too.  I kind of eyeballed the general shape of a kirtle from ivory tulle; a lot was going to happen to it and since it was so light and transparent, it didn’t need to be perfectly symmetrical.

I free-styled a yoke for the kirtle with more arm knitting and added some cap sleeves (which are only visible in some of the images unfortunately).  One thing I was finding with the arm knitting was that is is EXTREMELY forgiving.  Arm you within an atom bomb’s range of what you were going for?  Then it will probably work!

To unify the costume and also enhance the organic, oceanic feel, I arm knitted a piece for the bottom of the kirtle, basically a large triangle, and two smaller, upside-down triangles for either side of the egg pouch.  I left several yarn strings loose from the pouch triangles which would be used to tie the kirtle behind the back of the dress, just like a regular apron.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

The eggs were leftover from a shoot I did with Paul Telfer as the Sleeper’s Sentinel.  I’d had to buy a dozen of the super-large plastic eggs so I had PLENTY to use for other shoots!  I kept these fairly simple since there would be a lot going on visually in the images; I started with spray-painting a base coat of a semi-metallic light gold color and added flecks of bronze-black to make them look more like real eggs.  Repeat until they look right.  I knew I’d only need five or six eggs, since that was as many as would fit in the pouch I’d made so I didn’t waste any time painting extra eggs.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

I did do one thing to just one egg though…  I found a nail and a hammer and while the egg was still in two pieces, I hammered a hole through from the inside out.  Some sharp knives, pliers and more hammering later, I’d created what looked like a fracture in the egg from a chick inside starting to hatch.  Eggs = done!

I’d had my faithful model Dedeker Winston in mind for this character the whole time.  I usually cast characters in the same way I create them, just by what “feels right.”  I had not consciously remembered it, but it turned out there was a really wonderful real-world reason to have Dedeker play the octopus-mother caring for her eggs.  Dedeker has been an egg donor many times to couples who are unable to have children on their own.  In fact, one family has two children, both from Dedeker’s eggs, and they just requested a third!  It’s very unusual for a family to have so many children from the same donor, but I think it’s really lovely that all of their children will be linked in this extra way.  And clearly Dedeker produces really fantastic babies!  :)  Once I remembered that, it felt truly serendipitous that we were shooting this character together.

I knew that my wig was several shades darker than Dedeker’s hair and I had a couple thoughts on how to deal with it.  I knew she had a dark brown wig of her own which we could layer under mine, or we could totally cover all of her hair with a wig cap.  In the end though, she simply twirled her hair into a low bun, I set the wig on top of her head and since there was so much going on with the hair, it looked completely natural and blended right in.  If you looked closely, you could see that some of the hairs on her forehead were a bit lighter than the rest of her head, but I matched them up in about 30 seconds in Photoshop.  Sometimes the simplest method is the best!

We set out on a morning last summer to capture these shots of the character I’ve dubbed the Pink Mother.  We got started early and the sun was already blazing; it promised to be a miserably hot day but at the moment it was still pleasant.  I started shooting Dedeker in a dryer, dustier, yellower scene and led her along a path which gradually got greener and lusher, mirroring the octopus’ journey to find the perfect environment for her eggs to be born into.  The color pallet moved from warm and vivid to cool and less saturated, especially in regards to the Pink Mother herself.  As she nears death, the paler she becomes until the last shot, where she is very white.

She sacrificed everything she had for her eggs.  She loved them, cared for them, caressed them.  She journeyed over countless miles to find a safe, green place for them to be born.  Though it cost her everything, she never hesitated.  And, it seems, her journey was worth it.  The cracks in the eggs prove her right.  They were brought forth from the deepest love there is, and that can only be the best start to these new beings.

So thank you to Dedeker for being my medieval octopus mother and letting me share your story about your own eggs!  And thank you for trusting my vision even if it seemed questionable at the time ;)  You were the perfect, purest-loving mother to those babies!

And now enjoy the full images, some detail shots and behind-the-scenes captures!

A Journey Into Strange Lands © Sarah Allegra

A Journey Into Strange Lands © Sarah Allegra

A Journey Into Strange Lands © Sarah Allegra - detail

A Journey Into Strange Lands © Sarah Allegra – detail

A Journey Into Strange Lands © Sarah Allegra - detail

A Journey Into Strange Lands © Sarah Allegra – detail

A Journey Into Strange Lands © Sarah Allegra - detail

A Journey Into Strange Lands © Sarah Allegra – detail

 

The Air Of A Quest About Her © Sarah Allegra

The Air Of A Quest About Her © Sarah Allegra

The Air Of A Quest About Her © Sarah Allegra - detail

The Air Of A Quest About Her © Sarah Allegra – detail

The Air Of A Quest About Her © Sarah Allegra - detail

The Air Of A Quest About Her © Sarah Allegra – detail

 

Migration's Imminent End © Sarah Allegra

Migration’s Imminent End © Sarah Allegra

Migration's Imminent End © Sarah Allegra - detail

Migration’s Imminent End © Sarah Allegra – detail

Migration's Imminent End © Sarah Allegra - detail

Migration’s Imminent End © Sarah Allegra – detail

 

Her Last Act Of Devotion © Sarah Allegra

Her Last Act Of Devotion © Sarah Allegra

Her Last Act Of Devotion © Sarah Allegra - detail

Her Last Act Of Devotion © Sarah Allegra – detail

Her Last Act Of Devotion © Sarah Allegra - detail

Her Last Act Of Devotion © Sarah Allegra – detail

Her Last Act Of Devotion © Sarah Allegra - detail

Her Last Act Of Devotion © Sarah Allegra – detail

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

Silencing Again

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.

 

Several Pints

But not of beer.  Beer would have been so much better.

Well.  I’ve been meaning to tell you guys for FOREVER about the adventure I had surrounding my sinus surgery.  It’s a little bit long of a story; I will try and keep it brief but there was just a lot that happened, so I can’t promise anything.

From mid-July through the end of October, I was getting colds, repeatedly.  I’d get a cold, get over it, have about 2-3 weeks of more or less “normal” (for me) time, then get another cold.  One of these colds lasted for 3 weeks, 1 turned into strep throat and another turned into an ear infection so exquisitely painful that I gave serious thought to gouging the ear out of my head.  After a string of doctor visits, I was eventually sent to an ENT; an ear/nose/throat specialist.  I loved him right away.

He immediately agreed that this was abnormal, took a glance inside my nostrils and since there was nothing obviously wrong inside sent me off for some allergy blood tests and a CT scan of my sinuses.  The office was shockingly quick at getting this all set up; I’ve come to learn they are an extremely efficient and well-oiled, patient-loving machine.

The allergy tests showed a mild allergy to Timothy grass and mold, neither of which surprised me and both were too mild to be to blame for my illnesses.  The CT scan however showed inflammation and serious congestion in my sinuses, particularly on the right side and more toward the back of my skull.  I hadn’t ever really given a lot of thought to just HOW MANY sinus cavities you have in your body, but it’s rather a lot, as this image shows:

My ENT recommended a surgery where he would go in and clean all the cavities out (while I slept deep in anesthesia) because it clearly wasn’t going away on its own.  If I did nothing, the cycle of colds every 2-3 weeks would just continue, which was obviously not a livable option.  And it also happens that my doctor is not only an ENT specialist, but that he specializes in this exact type of surgery!  And Geoff has had this exact surgery twice!  I felt I was in very good hands with both of them taking care of me, so I agreed to have the surgery done.

Before

Before

November 4th Geoff woke up very early and drove me to the surgery center.  While I’ve had my nerve-blocking injections countless times, this was the first true, actual surgery I was going to have.  They knock me out for a short time for the injections, but it’s just a sedation, not actual anesthesia.  I was a little nervous, but mostly just excited to have the stupid sickness cycle stop.  I woke up with a sore throat; they’d had a little trouble intubating me (I’m guessing because I’m so small) and a little nauseated, but they gave me some nice drugs which cleared the nausea right away.  My ENT had taken a swab of the gunk in my sinuses and sent it to the lab to do a culture on it and see if it was anything that needed further treatment.  So other than a slightly sore throat, it was all very routine.

After - very sleepy looking

After – very sleepy looking.  Get used to the “mustache bandage” look.  I don’t know why my gown looks like it’s going to fall off at any moment.

The next couple days are a bit of a pain-filled blur in my mind.  Thankfully, Geoff stayed home with me to get me through the worst of it.  Of course, ALL my sinuses were inflamed and unhappy and my throat was really starting to hurt.  I’d expected to feel like I had a bad cold afterward but this was a whole new level of sinus and throat pain which I’d never experienced.  Geoff was able to call my doctor and explain my incredibly sore throat (talking was not going to happen from me) and he immediately prescribed the most beautiful, soothing numbing gel to gargle with.  It was a little messy, and about the consistency of pudding which made it hard to actually gargle, but oh my GOD did it work.  It turned me from the strep-throat severity of pain where breathing feels like inhaling shattered glass into something mildly uncomfortable when it wore off.  More points for my doctor!

Over the weekend, I started feeling better and better and by Monday, 6 days after my surgery, I decided I could run a short errand to my nearby craft store, since I had a really spectacular coupon which was about to expire.  As I reached for my purse (in a position I’d been in multiple times since the surgery) I felt something warm and wet in my nose.  I grabbed a paper towel, not thinking much of it until I saw I’d dripped blood onto the kitchen floor.  And then it REALLY started pouring.

I managed to grab a large wad of paper towels and run into the bathroom.  I have never bled like this in my life.  It was like all the veins in my sinuses just gave up and let loose.  It seemed to be coming mostly from the right side of my nose and very far back; if I tipped my head up or even held it level, blood waterfalled down my throat.  In a mild panic and not knowing what else to do, since I didn’t want to be swallowing all that blood, I held the paper towels to my face, leaned forward and let it drip into the bathroom sink.  And fortunately, I had my cell phone in my pocket, so I called Geoff, who had just gotten to work.  I was stuck in the “fright” of the “fright or flight” response and couldn’t think of anything else to do.

We discussed if I needed an ambulance and I just didn’t know; I did notice that after the initial panic, as I tried to slow my breathing and calm myself, the bleeding slowed a little, which gave me some hope.  Geoff called the ENT’s office and came right home, but we both knew it would be about 45 minutes before he got there.  So Geoff called John, one of my wonderful neighbors, hoping he was home.  John wasn’t home but he was close by.  He dropped everything and came rushing home to check on me until Geoff got there.  I later found out that John had been about to get his car washed and was about to send his car through the machine where the initial cleaning is done and there were people lined up behind him.  The car wash people told him it wouldn’t take long to go through the machine and then he could just leave, but John made everyone move their cars so that he could leave right that instant.  That’s the kind of people my neighbors are.  They more than have my back.

Sleight Of Hand © Sarah Allegra, featuring my neighbor John

Sleight Of Hand © Sarah Allegra, featuring my neighbor John, who will make every single damn car get moved if he needs to check on me quickly

John got home and at that point the bleeding had mostly stopped so we agreed an ambulance wasn’t needed but he sat on the bathroom floor with me and told me stories to calm and distract me until Geoff got home.  He was an angel.  (And just to be clear, my other neighbor, his wife Donna, would have been equally adept in his role.  John happened to be closest to home so he took up the task, but Donna certainly would have done the same if she’d been around.  After all, she helped me take care of the opossum littler I found!)

After I’d calmed down and the bleeding leveled off, I took a few photos of the sink to record it.  The photos look dramatic, but every person who actually saw the copious blood agrees they don’t do it justice at all; both Geoff and John said it looked like a bad Halloween party decoration.  But to give you an idea, here’s one of my cell phone captures.

It looks like a fair bit of blood, but trust me, it was much, MUCH worse in person

This photo actually came from Geoff’s camera, not mine.  His takes much better photos than mine does.  It looks like a fair bit of blood, but trust me, it was much, MUCH worse in person.  Geoff was also a saint for cleaning up the whole bathroom by himself, which I felt bad about, but I was under strict orders to REST and lay down.

So Geoff and I went back to see my ENT.  He took a look around, determined that yes, I was bleeding rather a lot and decided to pack my nose.  Apparently, he’d used a gel-like packing while I was out for the actual surgery; it was similar in texture to Jello.  I couldn’t even tell that there was anything in my nose, it was so mild and comfortable.  The new packing however was NOT pillowy and Jello-like.  I can only describe it like having an entire tampon made of broken glass and cacti bits shoved up one nostril.  And that’s after they sprayed a numbing spray inside my nose.  My eye watered and watered on that side of my face but I did not cry.

The packing was so incredibly uncomfortable that I couldn’t even talk or all the glass shards and cacti quills jabbed at me from inside my nose.  I was to keep it in for two days to really stop the bleeding, then I could have it out.  I wasn’t exactly happy, but I was glad to have the bleeding stopped.

Bandaged up with packing up my nose, taped to my cheek

Bandaged up with packing up my nose, taped to my cheek

The rest of the day, I communicated with Geoff through gestures, grunts and writing things down.  At one point I laughed quietly to myself and wrote “this is like The Leftovers,” on my pad of paper and showed it to him.  I was not in the least bit comfortable, but I didn’t worry I was dying imminently anymore and I knew that I could get through two days of pain, high though it was.  My doctor made sure that I was well stocked on painkillers before I left, because that’s the considerate kind of guy he is :)

The next morning I woke up and realized I was swallowing… and again… and again… and then I jolted upright and rushed to the bathroom because the bleeding had begun again.  Since I was sleeping on my back, slightly elevated (like I was supposed to) and the bleeding was coming from so far back, all the blood was just pouring down my throat like a thick, gross waterfall.  I had no idea how long I’d been swallowing my own blood, but I was again alarmed that I was bleeding so much, even after the packing was in.  It was coming from so far back, it was even behind the packing; it was like it wanted to run down the right side of my nose, but since that was now packed, it was overflowing down the left side and down my throat.

This time when Geoff called the ENT’s office, they told us to just come in right then, so I did, pale, woozy, feeling awful, still in my PJs, since I didn’t dare take the time to get dressed, nor make any movements which might cause my nose to bleed more.  I sat in their lobby for a few minutes, while the bleeding had blessedly stopped momentarily, with a huge ball of paper towels clutched to my face and a plastic grocery bag in my other hand in case I started dripping.  I laid my head against Geoff’s shoulder, closed my eyes and tried to forgot the lobby full of people who were staring at me in alarm.

The nurses were trying to clear a room for me when I suddenly felt the surge start back up for no reason.  Geoff alerted the nurses.  One of them brought me a kidney bowl to hold under my chin for dripping, then they were able to usher me off into a room away from the frightened eyes of the other clients.

kidney bowl small

A kidney bowl just like this!  The curved shape makes for good under-face catching.

My ENT was in the middle of surgeries of his own, so I saw one of the other doctors, who was just as lovely and kind as everyone else had been.  All the available nurses hovered around, trying to find anything to do to make me more comfortable; one wet paper towels and dabbed my forehead, another brought me some ice water to sip between procedures from the doctor.  There was one nurse in particular who stayed right by my side the entire time, no matter how gross it got.  She would frequently hold my hand or pat my knee during difficult parts and she was completely sincere about it; she wanted me to feel better and was doing any little thing she could think of.  As truly, completely awful as I felt and as unpleasant of an experience as it all was, whenever I remember that nurse, I feel a surge of the warm love she radiated.

This doctor decided to remove the packing, since all it was doing was obstructing the view of where the blood was coming from, so he pulled it out… and my god, I don’t know  which was worse, going in or coming out.  Either way, it’s not something you want inside your nose.  Removing it started a fresh flow, much of which was freely flowing down my face into the bowl under my chin.

The doctor kept needing me to tip my head back so he could see what was happening inside, which meant the blood kept going down my throat and getting swallowed.  At one point I started to feel very nauseated (more so than I had all morning).  I murmured to Geoff that I thought I might throw up and then a moment later, I was barfing up blood into my kidney bowl.  Geoff held this bowl for me under my chin as I filled it, he and the nurse did some sort of quick shuffle with bowls and I filled a second one.  If you’re ever given the choice to throw up blood or not, I would strongly recommend you choose to NOT do it.  That was probably the grossest thing that’s ever happened to me, and the whole time, Geoff and my nurse stood right by me, holding bowls (she did have gloves, but it still had to be pretty unpleasant), smiling and patting encouragements and holding my increasingly icky hands.  They are saints.

Shortly after that, the doctor was able to temporarily stop the gushing and I heard him and Geoff discussing that I would need an emergency surgery that day so they could go in and stop the bleeding for real.  I was going to be transferred to a hospital where I’d wait for my ENT to finish his current surgeries, then he’d meet me at the hospital and work on me.  They were weighing the options on either Geoff driving me over or having an ambulance come and take me when I asked if I could get up and wash my hands at the sink in the room, since they’d gotten spattered with blood and whatnot.  I made it to the sink, slowly, and I washed my hands, carefully, and then…  I’ve fainted before, I recognized the rushing deafness and darkness and knew I was about to go out so I hurried to plant my back against the cabinets and tried to slide down to the floor before I lost consciousness, thinking I’d have a shorter fall from there.  Looking back, I can see it would have been better to just say, “Hey Geoff, I’m passing out,” but of course you’re not thinking very clearly at the moment.  Luckily he saw what was happening so he leaped across the small room, nimbly avoiding expensive machines and he grabbed me before I hit the floor.  From his quick action, I never quite lost consciousness, but I was pretty well a rag doll for a few minutes.

At that point, the doctor wisely decided I should travel to the hospital by ambulance.

That was a first for me; an ambulance ride.  The medics were all very nice and clearly knew what they were doing; they got me on a saline IV before we even made it to the hospital, which was only a couple miles away.  I did decide that I didn’t like laying down and facing backwards in a moving car though, it would have made me carsick if the ride lasted much longer.  Although I don’t think that I would have had anything else to try and throw up.

The hospital got me situated in a room pretty quickly, a nice one by hospital standards; it was private, I had my own bed, bathroom and TV and there was a curtain we could draw over the glass doors.  Since at that point I was stable, we just had to wait a while for my doctor to finish his other surgeries and come over to the hospital.  So for a while, everything was surreal and strangely calm.  We watched some TV.  I saw my first episode ever of Seinfeld.  The staff came, drew blood, determined I did not need a blood transfusion, and switched out my now-empty saline bag for another one.

In my bed at the hospital, still being a trooper

In my bed at the hospital, still being a trooper.  If you look carefully you can see how pale my lips are compared to the rest of my face.

It was fairly late in the day when my ENT was able to get over to me, but he seemed as fresh and alert as if I’d been his first patient of the day.  He brought an assistant with him and they used one of the hospital’s anesthesiologists.  We spoke to the anesthesiologists for a little while before they took me into the surgery room and Geoff mentioned that they’d had trouble intubating me for the first surgery.  The anesthesiologists looked at me assessingly and said, “I don’t think I’ll have trouble,” which he did not.

For me, then it was being wheeled into different rooms and getting various IV injections; the first one made you really, really relaxed and the second made you sleep.  As a chronic insomniac, I wouldn’t mind that every night :)  As I was told later, once I was under, my doctor looked inside my nose and determined that one artery at the very back of my sinuses, where the two sides join together had simply burst for no good reason, and that was what was causing all the bleeding.  He cauterized the offending artery along with a few of its friends for good measure, filled up my right side thoroughly with the Jello packing and let me wake up.  I spent a little longer in the hospital, in a different room with Geoff.  The anesthesia had again made me a little queasy, but the nurse gave me an injection which made that stop.

Groggy and pale after the emergency surgery, but I could muster the will for a thumbs-up, goddammit

Groggy and pale after the emergency surgery, but I could muster the will for a thumbs-up, goddammit

And then we finally went home, more than 12 hours since we’d left it.  Thankfully, our neighbors had come and let Calantha outside much earlier in the day and also fed her dinner.  She and the cats were happy to see me and concerned about all the medical smells on me.  I think I stumbled around for a little bit, while Geoff feed the cats, I found PJs to wear which hadn’t just been in a hospital, all the while Geoff kept telling me to lay down; I don’t actually remember very much of this part.  But I think I fell asleep fairly quickly.  As soon as I woke up the next morning, I checked myself anxiously; did I taste blood?  Was everything ok?  And for the first time in several days, I was ok.

Geoff stayed with me for a couple of days which ended up being really needed.  I was extremely weak (and extraordinarily pale, everyone kept telling me, even considering my baseline paleness) and almost any movement made me very, very dizzy and light-headed.  Geoff made me lay down as much as he could, but I’d have to get up periodically to use the bathroom, or for some other task he couldn’t do for me.  It was a procedure though.  First, sit up in bed instead of laying down, propped up on a pile of pillows.  Let the dizziness pass.  Swing legs over side of bed and wait.  Let the dizziness pass.  Slowly stand and immediately put your hand (and probably face) on the wall while you ride out the biggest wave of dizziness.  Once you’re a little more settled, you can probably walk the 10 feet to the bathroom.  Geoff hovered anxiously every time I got up just in case I started to go down again.

I went back to see my ENT two days later and my GOODNESS, did EVERY person in that office remember exactly who I was.  I made quite the impression on them.  (Even now, as soon as I walk in, there’s a chorus of greetings from the whole staff.)  Everyone was happy that the surgery had worked and I wasn’t bleeding at all any more.  So why did the artery burst in the first place?  No one has any idea.  It’s just a mystery.  My doctor talked about how every now and then, you’ll have a patient who bleeds later on the day of the surgery, or maybe the day after, but 6 days later is unheard of.  There I go again, baffling doctors with my weird body.  I felt so, so much better compared to how I’d felt at the beginning of the week, I didn’t even really care how weak I was, I was just glad to be not bleeding, not at a medical facility, at home and not nauseated.

One of the first days I was able to stand for long on my own.  But look, I'm not at the doctor's!  I'm not at the hospital!  I'm wearing 18 layers because I have no blood, yes, but I'm home and on the mend!

One of the first days I was able to stand for long on my own. But look, I’m not at the doctor’s! I’m not at the hospital! I’m wearing 18 layers because I have no blood, yes, but I’m home and on the mend!

My doctor tells me I lost 2-3 pints of blood between the 2 days of bleeding, which is significant, especially for someone as small as I am.  And frankly, I’m still feeling the effects of it.  I learned that it takes 120 days for a blood cell to replace itself, so even though I’m taking iron supplements to help my body along, it’ll be the middle of February before all my blood is replaced.  It’s getting better, but there was a while where I could hardly do anything that involved walking for more than a few feet without getting dizzy and winded and having to sit down.  Even now, I still have to be careful.  For some reason it there’s any kind of incline I’m walking up, even a very gently sloping one, I feel like Sisyphus pushing his boulder up a hill.  I still have to take a break halfway through walking the one flight of stairs at my therapist’s office, and another breather when I get to the top.  It is getting better though, noticeably so, and my doctor assures me this is normal for the amount of blood I lost.

I also found out that the culture they’d sent in of the goo inside my sinuses had turned out to be harboring a staph infection, which the antibiotics I was on as a natural result of the surgery should get rid of also.  I ended up needing to go two rounds with the antibiotics to really clear it up but it seems to be gone now.  And I have not had a single cold since I had my surgery, which goes to prove that really was the cause of all my summer sicknesses.

Overall, this was definitely not a fun experience but there were some good things that came out of it.  I know what a caring and attentive ENT I have now, along with the entire staff.  I practiced really resting and allowing others to do things for me when I needed them to, which is hard for me to do.  I’d much rather just do it on my own even if it makes me pass out than bother anyone else.  I watched Winter’s Tale and had a lovely afternoon with my mom, who came to stay with me one of the days Geoff had to be at work.  I felt loved and cared for.  And then, of course, there’s this… my mom brought this “to cheer me up” because of who was on the cover:

Matthew McC small

Thanks, mom :)  And big thanks my neighbors, my ENT and all of his staff, the ambulance workers and everyone at the hospital, if any of them are reading this somehow.  My friends and family were very diligent about checking in with how I was feeling by text, which was perfect as that was about all the communicating I could do.

And of course big, HUGE thanks to Geoff for taking such excellent care of me!  He always does, but I always appreciate it!

Travis Fights Giants

I think I’ve told you guys a little bit about shooting with Travis Weinand for the first time recently.  He moved here fairly recently from Philadelphia, is an accomplished musician as well as visual artist and also trains and competes regularly in American Ninja Warrior.

Travis Fights Giants

His sheer size (measuring a full 6′ 5″) along with his strength and muscle control which come from hours and hours of training every day make him an ideal model.  There are so many things he can do for real which I would have to use Photoshop trickiery for anyone else (including me!)

Seriously, for real? For real.

Crazy

You can follow Travis’ training on his Instagram feed; I find it equally inspiring and humbling :)

I’m still working out exactly how to best showcase Travis’ unique skills, but I noticed that he has a really great look for a more editorial kind of shoot… which was something I’d been wanting to do recently.  Luckily, Travis came equipped with a couple suits, I gave him a dagger to add an extra element to the “fashion story.”  I explained the premise I had in mind; his character was a James Bond-type who went around doing amazing, dangerous things while looking flawless and set him loose.  Travis did not disappoint :)

I’m happy to present the first part of what will hopefully become an ongoing series, named after Travis’ Tumblr page: Travis Fights Giants.

Travis Fights Giants

Travis Fights Giants

Travis Fights Giants

Travis Fights Giants

Travis Fights Giants

Travis Fights Giants

Travis Fights Giants

And lastly, a little behind-the-scenes fun :)

bts small

I hope you enjoyed this little dip into a different genre!  I hope to have more to bring you along the same line soon :)

Turning Leaves

I think it’s fair to say that 2014 has been something of a tumultuous year.  A lot of very good things happened!  And a lot of rather shitty things have happened to.  Let’s touch on the bad first and get that out of the way.

Reuniting With The Stars - detail © Sarah Allegra

Reuniting With The Stars – detail © Sarah Allegra; read on for the full image!

There was a heavy dose of bad this year.  Some of this has been discussed on the blog; three months of colds, sinus surgery, sinus surgery having dramatic and frightening complications, etc.  A lot of it has not been discussed on the blog, however; this does not feel like the proper forum for a lot of the more personal matters, especially ones which involve people other than myself.

The Oracle  - © Sarah Allegra

The Oracle – © Sarah Allegra

Geoff and I have to move.  We are really, really, really not happy about this.  I’m not going to discus the reasons for the move here, except to say that no one did anything wrong.  We always paid our rent, etc.  This is a heartbreaking blow; our neighbors have become like true family to us.  And while we won’t live too far apart after we all move to our new homes, it will never be the same as when we all lived together on the Compound, as we called it.

We Rise Again - © Sarah Allegra

We Rise Again – © Sarah Allegra

When my first surgery complication began and I started bleeding profusely from my nose to the extent that I was truly concerned that I might need an ambulance, our neighbor John came rushing home to make sure I was ok until Geoff could get there.  Once John and I decided an ambulance wasn’t needed, he sat on the floor with me and kept me calm and distracted.

Sleight Of Hand © Sarah Allegra

Sleight Of Hand © Sarah Allegra, featuring my neighbor, John

When I found myself suddenly clutching a whole litter of baby opossums and in charge of their safety, Donna came to the rescue and helped me keep them safe.  (They were eventually taken to a no-kill shelter which would rehabilitate them then release them into the wild when they were old enough.)  These are not your average people.  When we all found out that we’d no longer be living together, everyone cried openly.

One of the baby opossums

One of the baby opossums

And good heavens, it’s been so good for Calantha to be there!  Having a “pack” next door which she can come and go from as she pleases helped her put on a needed five pounds, which she’s maintained the whole time we’ve been here.  Basically, absolutely everyone is extremely unhappy about this for a lot of reasons, but there’s nothing we can do to stop it.

Calantha, modeling the Lady Death bonnet

Calantha, modeling the Lady Death bonnet

And of course I’ve been able to do a LOT of shooting there!  There are SO MANY trees; it’s very easy to make the background look like a forest if you just frame around the tell-tale signs of human habitation.  When you’re dealing with ME, being able to do an entire shoot without leaving your yard, or even getting out of your PJs if you want, can be an incredible boon.

This has also been an extremely tight year financially for us (which a move isn’t going to help).  Again, I shouldn’t go into exact details here, but a large part of our income vanished early this year and we’ve been trying to stanch the metaphoric bleeding ever since.

The Eye Of The Storm © Sarah Allegra

The Eye Of The Storm © Sarah Allegra

Those are the biggest highlights of the bad, of the things I feel I can talk about here.  It’s been a really difficult year and there have been many times when I’ve dissolved into tears over one more bad thing happening.  The world has felt completely against us most of the year, no matter what we’re planning or how noble it might be, which of course feels terribly unfair.  I’m holding out hope that this is all happening for a reason and that things will change soon.  Some days that’s a very difficult hope to hold on to.  I’ll talk a little more about this when I discuss this year’s new image.

Let’s move on to happier topics for now.  Let’s talk about some of the good things that happened this last year!

Inside Looking Out © Sarah Allegra

Inside Looking Out © Sarah Allegra

I was able to promote a lot of awareness about myalgic encephalomyalitis, or ME, with images (which go in my Enchanted Sleep series), interviews, articles, videos and blog entries.  During ME Awareness week, I wrote a blog entry for each day of the week and held a print giveaway for those who helped spread awareness about it.  The Microbe Discovery Project asked for people to share their ME stories, so I recorded a short video for them.

I got to work with some really fantastic new models, Dan Donohue and Travis Weinand.  They were both wonderful; the kind of models who make you want to come up with new concepts just for them.  I’m looking forward to working with both of them again!

Where Black Stars Rise © Sarah Allegra

Where Black Stars Rise © Sarah Allegra

Lost Pride © Sarah Allegra

Lost Pride © Sarah Allegra

 

I lost Dedeker Winston to the FOX show Utopia for a while, and I’m selfishly glad to have her back again :)

Water For The Free © Sarah Allegra

Water For The Free © Sarah Allegra

I was really pleased to have been included in quite a few online magazines, blogs and sites.  Photo Focus named me their Photographer of the WeekMillennial Magazine gave me their Self Portrait of the Week spot.

Phlearn, one of my very favorite photography sites, included me in their Weekend Inspiration blog three times during the year, with the images Lady Death, The Shadows Lengthen and The Light Is Winning.

Lady Death © Sarah Allegra

Lady Death © Sarah Allegra

I was able to have brushes with both of my favorite authors, Robin McKinley and Peter S. Beagle.  Robin McKinley was gracious enough to let me write two guest posts for her blog and talk about DreamWorld!  In addition to the ongoing work I’ve been doing with Peter Beagle and Connor Cochran, Peter’s manager/publisher as well as my business manager, they had a special showing of The Last Unicorn in Santa Fe, NM, in a theater George RR Martin has helped restore.  Since George RR Martin was going to be at the screening, Connor asked for some of my prints to hang in the theater, which led to this amazing moment caught on camera between the two beloved authors.  While I have been credited as taking the photo, I was unable to be there in person although I would have LOVED to have been there!

Peter S. Beagle and George RR Martin with unicorn and dire wolf plushies, in front of my prints!

Peter S. Beagle and George RR Martin with unicorn and dire wolf plushies, in front of my prints!

My dear friend and frequent model Katie Johnson started a video series interviewing some of the wonderful photographers she works with called Artist Profile.  Katie was kind enough to start the series interviewing me; you can see the video below!  The series has been really interesting to watch grow and I’m very honored to be a part of it!

Many of you will have heard me talk about how intensely I love Sundance’s original show Rectify.  If you’re new to the party, I LOVE IT.  Go watch it right now.  Both seasons are streaming on Netflix!  For those who have seen it, I gathered my courage, reminded myself that it’s just a show and that these are actors, not the actual characters, and asked Jayson Warner Smith (Wendell on the show) if I could interview him for the blog.  He is actually a lovely and not at all icky, creepy person and kindly sad yes to my interview request!

Tell Me A Happy Story © Sarah Allegra

Tell Me A Happy Story © Sarah Allegra

One of my images was featured on Etsy‘s front page which made me squeal like a little girl.  Luckily I got a screen capture of it before it changed to another treasury!

Etsy's front page 08/08/2014

Etsy’s front page 08/08/2014

After I released Where Earth Meets The Sky, it was requested that I make a video showing how I’d created the image.  Happy to oblige, I made the following video:

Through the kind help of my friend Handy Andy Pandy, I learned how to make animated gifs showing the whole editing process of an image, which I’ve had a lot of fun doing!  I don’t do it for every image just for time reasons, but I think it’s fun to do when I can.  Speaking of Andy, he included me in his recommended artist list both for his part of the Blog Hop, and also on the article he wrote for FStop Lounge titled 3 Photographers You Should Follow.  I blushed and couldn’t have been prouder!

The Blue Ribbon © Sarah Allegra

The Blue Ribbon © Sarah Allegra

I wrote an article for In My Bag titled 5 Reasons Why Creative Self Portraiture Will Help You Become An Epic PhotographerBrooke Shaden was the guest judge that month and felt my article was good enough that she created a third place spot just so my article could be crowned third!  Talk about feeling good!

I’ll try and wrap up this year’s big interviews and features… there was the one Lens People did, a lovely and in-depth interview with Ezra Magazine, and another feature from Dodho Magazine.  The wonderful publication Photography Monthly included one of my self portraits in their October issue from this year.

Where Earth Meets The Sky, model Katie Johnson.  © Sarah Allegra

Where Earth Meets The Sky, model Katie Johnson. © Sarah Allegra

The esteemed Photographer’s Forum chose one of my images, Where Earth Meets The Sky, modeled by Katie Johnson, as a finalist in their 2014 Best of Photography Contest.

Photographer's Forum Best of Photography 2014 book - click here to get your own copy!

Photographer’s Forum Best of Photography 2014 book – click here to get your own copy!

Perhaps one of the best online feature I’ve had so far came this year when BoingBoing ran a feature on my “dreamy, trippy, fantasy photography” after seeing it come up in their Flickr stream!

Singed Wings © Sarah Allegra

Singed Wings © Sarah Allegra – an image to honor the Granite Mountain Hotshots

But I think the feature I’m most proud of came from winning a contest from Good Light! Magazine, hosted by Viewbug.  The contests’ theme was “People and Water.”  My image “A Drop of Blood” was chosen as the winning photo, which of course was just thrilling!  But the prizes were really meaningful to me; first, a feature on View Bug’s blog about how I captured the image.  Next was a really lovely article in Good Light!’s magazine about why the image was chosen:

Good Light Magazine Feature, image © Sarah Allegra

Good Light Magazine Feature, image © Sarah Allegra

And then my very favorite part was watching the short video where you can actually hear from the contest’s judge himself (and hear it in his lovely accent!) about why the winning images were chosen.  It was truly thrilling and embarrassing to hear someone say such nice things about my photograph!  Although I will gently note that the title came first and the image was built around it, not the other way around, but I can certainly see how it could confuse people!

Now, in less photography-related news, Geoff and I got to see the Breaking Bad House.  We also celebrated out 3-year anniversary of being married, which Geoff worked hard to made special despite me being deep in the hell of every-three-week-colds.

Happy anniversary!!!

Happy anniversary!!!

At the advice from Patti Penn, my Reiki teacher, and Geoff, I started making an important mental shift.  I realized that I was looking at my future with ME as written in stone; that it was a pre-determined fate for me to always be sick with it to some degree.  Sure, you hear about some people who go into remission, and even more rarely, are cured, but it was too painful to hope for that.  I tried to not expect that I would always get progressively worse, even though that seemed to be the direction everything was heading in, regardless of whatever diet or lifestyle changes I made.  It was less scary to expect that I’d always be dealing with it to some degree; opening myself up to the idea that I might get better some day was making myself vulnerable to extreme disappointment.

The Fragile Blossom That Opens In The Snow © Sarah Allegra

The Fragile Blossom That Opens In The Snow © Sarah Allegra

But I slowly started realizing that if I expected to always be sick, it would become a self-fulfilling prophecy and I would always be sick.  So as frightening as it might be, I had to start letting the idea of being healthy enter my life.  And it was very scary, very difficult.  Knowing you’re going to be fucked for the rest of your life is something you can adjust to, prepare for and learn to accept.  Having the possibility of healing destroyed the mental plans I’d been preparing myself for, and while it would be a very, very good thing to find myself well, the risk of shattering disappointment was so great, I didn’t want to even entertain the idea.

But I needed to embrace that idea, as terrifying as it might be.  Geoff and Patti both brought up the same idea to me, completely independent from each other and without knowing what I’d been thinking through.  It seemed like a very clear sign.  So I’m taking a deep breath and plunging into the frightening unknown.  The unknown where I could get better some day.  And if I don’t get better, it certainly will be heartbreaking.  But if I don’t allow myself to be vulnerable in this way, then I definitely will not ever get better.

Toward The Boiling Sun © Sarah Allegra

Toward The Boiling Sun © Sarah Allegra

This is one of my big plans for 2015.  Every day, instead of dwelling on what I couldn’t or didn’t do, focus on what I did do.  Even if 99.9% of me feels like complete shit, focus on that .01% where I felt good.  Instead of being frustrated, angry and disappointed with the limitations of my body and mentally say nasty, demoralizing to it, I’ll praise it for the good it did.  I’ll tell it that I know it’s working so hard, that it’s trying its best and that I appreciate all the effort it goes to.  It will take time to make this mental shift, but it’s worth making it.  And I will practice grace with myself, both in what my mental dialogue is and with however long it takes me to heal.  I believe this is the only way I have any hope of getting completely better some day… and no matter how painful that hope can be sometimes, I will commit to it.

Spring's Awakening © Sarah Allegra

Spring’s Awakening © Sarah Allegra

I’ve got a lot I’ll be working on through 2015.  I have big plans for my Glass Walls series, which explores animal rights, along with continuing to build DreamWorld.  A couple burners are being kept busy with Peter Beagle/Conlan-related plans.   And I’ve got numerous projects at various points of completion which I’ll be sharing with you when I can :)

The Light Is Winning © Sarah Allegra

The Light Is Winning © Sarah Allegra

I’ve scattered some of my favorite images taken over the past year throughout this post (many of which you can find in my 2015 calendar, on sale here!), but I wanted to leave you with something to inspire you in your own photo creations!  So, in no particular order, here are some of the photographers I recommend you start following right now, if you haven’t already!  There may be some nudity, so just keep that in mind.

Jessica Trinh/Sprinkle Happiness

David Talley

Helen Warner

Chris Arnade

Tim Andrews

Kindra Nikole

Kirsty Mitchell

Brooke Shaden

Robert Cornelius

Handy Andy Pandy

Unsinn Image

And lastly, though she is not a photographer, I highly recommend following Katie Johnson, one of the models I work with most frequently.  She writes blogs for several site which cover a variety of subjects and angles.  If you’re interested in modeling or pole dancing to gain confidence, you’ll find her a kindred spirit.  If you’re a photographer, many of her articles are directed at you and will help you improve your photographer/model relationships.  Plus, she’s just the loveliest person and one I am happy to have in my life and call a friend :)

Carried Away By The Wind © Sarah Allegra - a rare image without a human subject

Carried Away By The Wind © Sarah Allegra – a rare image without a human subject

So… this new image.  As I’ve said, it’s really been a pretty rough year, all around.  I watched a movie with my mom recently, on a day she came to visit me after my surgery and make sure I actually laid down all day (something I have trouble doing).

Winter’s Tale ended up being very much a “Sarah movie” as Geoff calls them.  Critics weren’t overly taken with it, and I can see their arguments, but at the end of the day, I still really enjoyed the movie.  It’s hard to make mythic, hopeful movies which are sweet without being cloying or heavy-handed, and I felt that Winter’s Tale balanced itself well.  It’s also very beautiful visually and several of the themes inspired new creations of my own.

Richness In Winter © Sarah Allegra

Richness In Winter © Sarah Allegra

One of the movie’s main points is that “everything happens for a reason” (even the bad things).  This has been such an incredibly trying year; right now I can’t imagine good reasons for the numerous bad things which have hounded Geoff and me this year.  This image is sort of a peace-offering in a way.  A symbol to the universe to say I don’t know what the purpose of these things could have been, but I’m going to trust that there is a reason.  And not just any reason, but a good one.  One I will look back on later and smile, thinking of all the heartache and knowing it had been worth it.

This is the attitude I want to start 2015 off with.  A humble admission that I don’t have all the answers, and never will, but that I am continuing my direction of my life in the hope that tremendous good will be found along this path.  At the moment it feels a bit like a blind faith, but I have decided this is the mindset I need to start off 2015.  I am taking my leap; I hope the universe catches me.

Reuniting With The Stars © Sarah Allegra

Reuniting With The Stars © Sarah Allegra

Thank goodness Byron was around to lend me his opinion while I edited Katie :)

Byron giving me his opinion while I edited Katie

Vegan “burger” patties, mashed garlic cauliflower and baked potato, in case you’re curious what I was eating for dinner that night :)

 

What are you holding onto for 2015?  What plans are you making?  What hopes do you have?  I’d love to hear them!

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