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Posts Tagged ‘fight’

Square Hole

Square Hole: a self portrait © Sarah Allegra

I’m sure everyone reading this has had times when they felt like the often cited square peg in a round hole.  It’s a pretty universal human experience.  And, of course, we shouldn’t all fit neatly into every hole society expects of us.  If we did, there would be no one to rock the boat, to bring about desperately-needed change, no inspirational leaders, no one going against the flow and showing us we can do the same.

We need those people who obviously, obtusely, refuse to contort themselves into whatever-shaped hole is expected of them.  We need our spiritual leaders, those who bring about social reform, who call out those in power and refuse to let injustice stand.  We need artists and creatives who show us with words and paint and dance and pixels how the world could be different.  And we need them all to help us make this possibility a reality.

It feels cliche to say this as an artist, but I have always felt different from most of the people around me.  I rarely felt like I fit in, except for with the occasional kindred spirit I would meet, shining like a beacon in the night.  Those other beautiful, misfit souls who also felt like they didn’t belong; when we were together, suddenly, we did belong.  And I am very lucky to have married such a man!  Having just a few people like that in your life, people who truly understand you and appreciate you for you you are right now in addition to what you might be can make all the difference in the world.  It can be the difference between life feeling like a desert wasteland or a lush garden, full of birds who eat from your hands and fawns who curl up on your lap like a Disney movie.

Humans need to feel understood, to find their tribe.  I am very grateful to have found so much of mine, both online and off!

This square hole is in my mother-in-law’s house and usually houses a very handsome metal owl sculpture.  She was kind enough to let me move the owl and Geoff was sweet enough to help me shoot with self portrait in it (along with a number of other self portraits which I’ll eventually get around to editing).  He was also in charge of making sure I didn’t plummet to my death; one side of the hole is about chest-high on me, on the second story of the house, but the other side opens into the main living room, probably 20 feet high.  I am quite scared of heights, but I will brave a lot that I wouldn’t normally endure for the sake of art… especially if Geoff is there to make sure I stay safe.  🙂

Don’t worry if you feel like you don’t fit in.  You will find your people.  And once you do, the whole journey will feel worth it.  Dance to your own drummer.  Break out of the mold people try to put you in.  Live your life authentically, because you’re the only one who can.

Square Hole

Square Hole: a self portrait © Sarah Allegra

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What Else Can I Say About ME?

Here we are at May 12th again.  Another Invisible Illness Day come to bring awareness to all the illnesses and diseases which are impolite enough to leave their sufferers still appearing to be well.  Of course, anyone more than casually acquainted with someone who has fibromyalgia, myalgic encephalomyelitis, chronic fatigue syndrome, complex regional pain disorder, multiple sclerosis, rheumatoid arthritis, Crohn’s disease, Lyme, lupus and many, many more illnesses can attest to how debilitating they can be.  The facade of health they leave intact feels like salt in the wound; a confusion for those untouched by their cruel hand, a silent undermining force with us at every doctor’s appointment, a declaration that we are lying or greatly exaggerating our illness.

What else can I say about ME?  About all the other forgotten, ignored diseases swept under the rug of modern medicine?  Illnesses which embarrass our doctors with their constant reminder that we remain unhealed.  Sicknesses with confusing, confounding symptoms which can morph and change like the whim of a butterfly’s flight.  Maddening maladies which suck away our vitality, our joys, our passions, our lives as completely as any vampire.

I’ve written about ME extensively as it’s been an enormous part of my life for the last eight years.  How I have not had a single day since late May of 2008 that was free of pain or its constant, overwhelming exhaustion.  How it has progressively gotten worse each year.  How the government would like to pretend we invisibly ill don’t exist.  How grotesquely underfunded our research is, giving us the same amount of money for research as hayfever gets and less than 1/4 of what male pattern baldness receives.  You have heard me spout the facts and statistics.  You’ve heard me talk about my personal story and fight with ME.  What else can I say?

I can say this: I am not beaten.  I have not given up.

I am determined to get better.  I am committing myself to be well, even if I have it about through sheer mental will.  I will not give in to ME’s gloomy, hopeless future forecast of progressively worsening every year.  I am not accepting a future of the living death that is ME.

I don’t know exactly how I will get better, but I am going to.  As a sign of my determination, I changed my blog’s tagline for the first time since I started this blog years ago.  “Art, photography, life and why I always feel like shit,” felt perfectly appropriate at the time.  “Art, photography, life and how those are really all the same thing,” is much more appropriate now.  My identity is not Sarah-who-has-ME.  I am just Sarah.

As I wrote about in my last entry, my life has been pleasantly consumed recently by my spirituality.  I have strongly felt how focusing on fighting ME has been feeding it.  So now, I will ignore it as much as possible.  I do not mean that I will forget my body’s current limits, or not honor them.  Listening to my body and what it’s able to do is vital for my current and future wellbeing.  But I’ve realized that I can live within the confines of my case of ME while still not letting it reign in every area of my life, and that feel incredibly freeing.  This is the path I will pursue.

This also does not mean that I will not advocate for ME sufferers.  I still feel very strongly that the only way we will bring about change is by demanding it.  And we can only demand it if we know that it exists in the first place.  But I can also advocate without allowing ME to rule every part of my soul.

As May 12th approached, I wanted to create a new image for my Enchanted Sleep series, which is all about living with ME.  I asked Katie Johnson, frequent model and collaborator as well as dear friend, if she would help me bring some concepts to life and she gladly agreed to help.  Through a variety of factors, I wasn’t able to shoot these images until very recently, which meant I had a very short window to edit one up and release it for Invisible Illness Day, but I got it done!  Ideally, I would be releasing the whole short series we shot, but I am content with having just one to show you and help illustrate life with ME.  With that, please let me present my latest image to you, Living With The Tombstones.

Living With The Tombstones

Living With The Tombstones – © Sarah Allegra. Model: Katie Johnson. An image to help raise awareness about ME/CFS and other “invisible illnesses.”

I probably don’t have to explain the symbolism behind shooting this image in a graveyard.  ME (and many other invisible illnesses) truly can be a living, nightmarish death.  Even if you’re not one of the unfortunate souls cursed with severe ME, where any touch, light or sound cannot be tolerated, you die every day to the dreams and hopes you had when you were healthy.  You might discover new passions to pursue within ME’s confines, but do you ever truly forget what’s been taken from you?  If you do, I am not there yet.

I took the name “invisible illness” and interpreted it quite literally, editing out any part of Katie’s body which showed outside her long, princess-like dress.  And the mirrored mask felt like the perfect touch.  When people look at us, they rarely see us; they see their projections of who we are.  Often what they see says far more about them than us.  Some will look at me and, because I can occasionally manage to put on clothes, have Geoff drive and go with him to the grocery store, refuse to believe there could be anything physically wrong with me.  They don’t see the toll that those short, simple trips take on me.  They don’t know that grocery shopping is my ENTIRE plan for that day, probably several days.  How the lights and noise and bustle inside the stores give me migraines, panic attacks and leave me in bed for the rest of the weekend.  They don’t see the weight of my illness on Geoff and my family.  How if I see friends, they always have to come to me.  I so often feel like a dead-weight wife, daughter and friend.  The times I’m overwhelmed by the ME and can’t decide between crying and being too tired to cry.  How many pills I take every day to try and make it to the next day and not be consumed by the constant pain I’m in.  They just see a fairly normal-looking girl.

I can’t blame other people for not knowing that I’m sick.  I don’t display the characteristic signals of someone who is unwell, so of course people assume I’m healthy.  But we need to get to a place where I could tell a stranger that I have ME and they might know what I’m talking about.  That if someone else said they have MS or Crohn’s or fibro, that stranger would have heard of those illnesses.  That the stranger would have at least a basic idea of our struggle and the dire need for change, for research, for treatments, cures and basic respect.

We can get there.  We will.  One May 12th at a time.

Want to do more?  I can help you with that!

I’d like to thank everyone in my life, online and off, who has supported me during these trying past eight years.  Especially Geoff, who I’d only been dating for a month when I became ill.  Lesser men would have run from what he had to face, but he’s stuck with me, no matter how bad things get.  And I’d also like to thank everyone for the extremely warm and receptive response you all had to my previous blog post.  Your kind words and love and support are greatly appreciated, now and always! ❤

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Let me start by saying that I’m sorry I can’t give you more actual details about what’s going on, but I’ve been advised to continue to keep them under wraps.  Those of you who follow me on social media have already heard that I’m going through a difficult time right now.  What I can tell you is that I am about to do something on the 14th which is absolutely terrifying to me and has incredible, life-altering implications.  For me, Geoff and the fur-kids.  And while I have lots of people (like all you dear, lovely folks reading this) who are loving and supporting me, it’s all going to come down to the words I speak and actions I take on the 14th.  I will be alone at the critical moment; the pressure feels crushing.

I feel like Louis Zamperini in the POW camp holding his wooden beam.  I feel like Aerin facing the giant dragon Mar.  I feel like the unicorn standing up to the Red Bull.  I feel like one of Leonidas’ 300.  Frodo off to Mordor.  Rosie and Pernicia.  Lissar and her father.  You get the idea.

One small, anxious girl going up against something far, far bigger than she is; ill-equipped for the job.  The higher the pressure, the more my brain feels scattered and forgets important details.  And it’s crucial that I remember everything, no notes allowed.  The outcome of this will have a huge impact on my financial state, which is currently pitiful.  I need this win.

To say this has been stressful would be a huge understatement.  This sincerely feels like one of the single hardest, most frightening thing I have ever had to do.  But there’s no getting around it, I HAVE to do it.  And I will do my best.

The stress is causing giant waves of discord through my body, mind and soul; causing mayhem and destruction.  For weeks now, every night, I either have stress dreams or I dream that I’m dying… the dying ones are the worst because, in my dream, it’s wonderful, beautiful, the most peaceful, joyful thing I’ve ever experienced.  And then I wake up and remember real life and it feels like a glorious gift has been snatched from my hands while the weight of life crushes down upon me again.

Despite numerous antacids of all kinds, I’m having persistent heartburn, often in the middle of the night.  My pain levels are all elevated.  And as you can imagine, my sleep is suffering in quantity and quality.

I’m not writing about this to simply throw myself a pity party.  I am asking for your support.  If you pray, please pray for a quick and overwhelmingly successful outcome.  If you do Reiki, please send as much as you can.  If you light candles, please light one for me.  Please send all the love, good thoughts and energy that you can spare, whatever your system of faith may or may not be.  I will gladly take it all!

I am determined to win this battle.  And while it traditionally takes a while to hear about the exact outcome from the fight, I am equally determined to get an overwhelmingly positive answer, right then and there.  I am visualizing myself being victorious.  As much as I am afraid, I am doing my best to catch myself when I start to go into a spiral of worry over what will happen if I fail.  When I notice those thoughts, I actively change my vision of the future to one that I want.  I don’t need to open myself up to attracting any negative energy!

One thing about all the metaphors I listed a few paragraphs ago; despite the odds, they all succeeded.  Thinking about others who have overcome incredible trials is deeply comforting to me.  If they could do it, I can do it too.

I can say one thing: this is not about a new turn in my health or anything else along those lines.  My health is fairly crappy right now, as is usual, but I have not taken a turn for the worse…  other than the spiked pain, non-stop migraines, constant tension in my whole body, wildly increased anxiety, panic attacks and depression as well as extreme exhaustion brought about by all of this.  It’s stressful to the point where I don’t even want to edit or create many days, which is an almost unheard-of low for me.  But these are clearly responses to the weeks and weeks of stress and worry.  I don’t want you guys to worry that I’m hiding some terrible new diagnosis from you.

I know I will get through this.  And I know that with Geoff, I will deal with the outcome, whatever it is.  But more than that, I know I will win.  I have to.  Knowing that doesn’t take all my fear and anxiety away, but it does give me hope to cling to.

I feel incredibly fragile in every way, but I will battle and I will be victorious.  Still, your prayers, well wishes and love would mean a great deal to me right now.  I can use all the help I can get.

I promise that I will try and let you guys know exactly what’s happening just as soon as I can.  I appreciate that you’re all being very understanding about that and respecting the fact that I simply can’t divulge much right now.

This self portrait felt especially appropriate for this post.  It serves as a reminder and inspiration to me to keep fighting, to get up when I’m knocked down, and most of all, never give up.  Thank you all so very, very much for all your support!  I cannot thank you enough.

With that said, please wish me a miraculous victory as I go into this battle.  Now, let me go find my suit of armor.

We Rise Again - © Sarah Allegra

We Rise Again – © Sarah Allegra

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New DreamWorld image!!  I’m always happy to have a new installment for this series!

Apprenticeship © Sarah Allegra, model Noemi Regalado - detail

Apprenticeship © Sarah Allegra, model Noemi Regalado – detail

This image is a little bit “out of order,” so to speak.  The Apprentice is, obviously, an apprentice, but to someone you haven’t met yet, although you will.  In an ideal world, I would have shown you the Apprentice’s mistress first so it made more sense why she is out collecting herbs and plants and other ingredients, but you’ll have to just trust me on this for now  🙂  Hopefully I’ll be able to show you her mistress soon, but that’s going to be a pretty complicated shoot.

This image is extra special because it features a new model for me, Noemi Regalado.  Noemi is not someone who actively pursues modeling like most of the other people I work with.  She happened across my work and sent me an email asking if she could be a part of it.  Of course I said yes!  It took us a little while to find a time to shoot (which was all my fault; I think she first wrote me right around the time of my first sinus surgery and we know how that turned out.  And it seems nothing has calmed down since then!) but eventually we got a time set that worked for us both.

In a way, I’m a little glad that we had a few months to email back and forth and get to know each other a little more before the shoot although I’m sure the wait was maddening for Noemi!  (She will probably deny this because she’s very laid-back and easy going, but still.  Waiting sucks.)  In the course of our email exchange I learned that she has had her own health battles despite only being about the same age as I am.  She is a cancer survivor, currently completely in remission, and I suspect that she will stay that way.  She is a gentle soul but I know she fought that cancer out of her body.  She also participates in mud runs, something I probably would never have had the endurance for even before ME, and since her apartment only allows very small dogs, she volunteers regularly at a German Shepherd rescue group.  Every couple weeks she goes down, takes a dog out for a nice walk, socialization and a whole lot of love.  Then she repeats the process several times.  If that’s not one of the best examples of making lemonade from lemons that you’ve heard, I don’t know what to tell you 🙂  Shelter dogs have SO MUCH up against them, even the smallest gesture of love and attention can go a long, long way toward helping that dog find his or her forever home.  And so far she has been directly responsible for at least one Shepherd finding a home with a friend of hers!  I’m sure there will be more.

As you can see, Noemi is a very cool chick!  I wanted to come up with some concepts for her which would fit with her personality and her willingness to get uncomfortable and messy for a photo.  We ended up shooting two concepts; this first one that you’ll see today, as I said, is a DreamWorld image, and the second one, which I have not yet edited, will show off her willingness to do what it takes to get the shot.  And I have to say, she was a great model!  She took direction very well and had a better knack for it than some “actual” models I’ve come across 😉

So, let me tell you a little about making Noemi’s mask/headdress for this shot!  It all started with this lovely purple mask which I found at Rite Aid, of all places, on one of my many, many trips there to pick up prescriptions.  The color really caught my eye, I thought it would compliment Noemi well and I also noticed that it was less expensive than the completely blank, white masks at the craft store!  And no built-in swirls with the blank white masks either.  So that was a pretty easy decision to buy it.

Trying on the mask for research, NOT just because it was fun :)

Trying on the mask for research, NOT just because it was fun 🙂

But of course it can’t just be a basic mask, even if it looked very pretty in its basic form.  The first thing I did was cover it with a layer of lace, which happened to be a remnant cut from my wedding dress (because, surprise!, it was too long ;)).

Mask laceAfter brushing on a layer of fabric glue, I started with a layer of EXTREMELY glittery purple paint.

It doesn't look interesting wet...

It doesn’t look interesting wet…

But it dries into a really stunning color!

But it dries into a really stunning color!

Then I did some trimming on the lace to get the edges to match those of the mask itself.

At this point, I knew I wanted to put some leaves and flowers on it, but I didn’t know much more than that.  So I dragged out my fabric stash (what you’re seeing here is what I’d been able to buy during a HUGE sale!), my glue gun and just started messing around.

mask and loose flowersI knew I wanted to extend the sides of the mask with leaves, so I started there.  Maynard helpfully modeled this part for me.

Maynard is an awesome model, even when he's not facing the camera

Maynard is an awesome model, even when he’s not facing the camera

You can also see that I’d added a bit of black ink around the eye holes, rather like eyeliner.  Just a subtle touch to help draw the viewer’s eye since there was going to be a fair bit going on.

I just played around with different colored flowers and shapes, holding them in place, tweaking things here and there and then suddenly I had a finished mask!  I hadn’t planned on giving it so much vertical volume, that just sort of evolved naturally, but I liked how it looked so I went with it.  Some costumes I have planned out in precise detail before I ever start them, but others are more free-form, like this was.  Always listen to your gut 🙂

mask four small

A mask! Photos from here out are taken in the bathroom to protect it from over-eager cats.

As I looked at it the next day, I felt like it was 95% there but it needed… something.  I didn’t know what.  I mulled it over and when I woke up the next morning I knew it: mercury silver spray paint.

Krylon’s Looking Glass spray paint is no ordinary silver paint.  It has a truly magical quality to it and I end up using it in almost every costume or prop I paint.  Just the slightest mist gives it a mysterious, magical, ethereal touch.  I try to always keep a couple cans on hand because I never know when I’ll suddenly need them.

So that morning I took the mask outside and let the paint gently kiss the mask; just enough to give it that magical feeling without taking away the beautiful colors of the paint and flowers.  In the photos below (which are a little blurry, sorry, they were taken on my phone) the top photos show details of the flowers unpainted and the bottom have had their silver wash.

Flowers with and without Looking Glass paint

Flowers with and without Looking Glass paint

I filled a basket with appropriately magical-looking items and herbs but it didn’t make it into the final image.  Oh well.  You can see just a little of the vial necklace I made full of purple stones and beads and the gorgeous amulet/brooch.  Jewel tones just loved Noemi’s beautiful skin tone!

And now I’ll let you see the completely finished image along with some detail shots!  The show trees had just started blooming in the woods and the wild queen anne’s lace was bountiful.  Both made a beautiful, more neutral backdrop against Noemi’s vividly colored mask and costume.

sarahallegra.com

Apprenticeship © Sarah Allegra, model Noemi Regalado

Apprenticeship © Sarah Allegra, model Noemi Regalado - detail

Apprenticeship © Sarah Allegra, model Noemi Regalado – detail

Apprenticeship © Sarah Allegra, model Noemi Regalado - detail

Apprenticeship © Sarah Allegra, model Noemi Regalado – detail

Thanks to Noemi for being so patient through all this!  I’m very glad to have made a new friend though all this 🙂  And I’m very happy with how this turned out!  You’ll all just have to wait a little while longer to see the image where Noemi really proved her devotion to the finished image 😉

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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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******* NEW! *******

Red Bubble is holding a 15% of Stocking Stuffers Sale!  Use promo code STOCKING15 to get 15% off all stocking stuffers until 11:59pm PST on Friday, November 21 2014

I have also released my 2015 calendar, featuring 12 of my most popular images from the previous year!  I put out a new calendar every year making each one different and unique, as well as being a great value in getting 12 images to display.  Snap up this collector’s item and add a little magic and beauty to every day of 2015!

My 2015 Calendar!

My 2015 calendar!

The calendar features the beautiful models, actors and actresses Katie Johnson, Dedeker Winston, Dan Donohue, Travis Weinand and Aly Darling.  Images span many of my series’ such as DreamWorld, Enchanted Sleep, Glass Walls, Orphans Of The Mother Road and self portraits!

My Red Bubble store carries calendars, tshirts, hoodies, stickers, blank greeting cards, post cards, phone and tablet cases, laptop skin, throw pillows, tote bags, mugs (travel and regular) and even a few duvet covers, all covered in my images!  Every item they produce is extremely high quality and will last forever.  You can knock out all your holiday shopping in one stop, so come on by!  🙂

*******

It’s been a very crazy couple of weeks since my last post!  My sinus surgery is over, including an odd complication I had which caused an artery near the back of my sinuses to burst unexpectedly.  This led to me losing 2-3 pints of blood and having to have an emergency surgery last Tuesday to correct it.  I’m happy to say I seem to be all done bleeding and nothing else strange has happened since then!  I’ll tell you more about my adventure in another post; it’s a rather long story.  I’ve regained most of my strength but I’m still recovering a bit.  So let me tell you about today’s self portrait for now!

This image has been in my mind for a long time, ever since I this post.  I had discovered, in the course of looking through my blog’s stats, that someone had found my blog by searching “I have Chronic Fatigue Syndrome and I want to give up.”  My heart still breaks for this person.  I wrote a post at the time replying to them but I’ll probably never know if they saw it or what happened to them.

I’d wanted to create an image for my Enchanted Sleep series based on the idea of being beaten down by chronic illness yet getting up, but it took a while.  My first attempt was unsuccessful and I had to think for quite a while about what wasn’t working and then find time to reshoot it.  Eventually though, I had created the image I wanted to make.

While I had physical, chronic illness in mind when I was creating this, the image is certainly not limited to being interpreted just in that light.  Mental illness, for example, is another example of something you have to rise from again and again.  And it happens that I’m in a bout of depression myself right now.  The reasons are long and complicated so I won’t get into them now, but every day recently, I’ve felt like this just trying to get out of bed… never mind how I might feel physically.

Chronic illness, mental illness… they are not something you can beat in a day.  You’ll have good days and bad days.  You may have entire days, or even weeks or months where you don’t struggle with whatever it is that knocks you down.  But when it comes, you have to get back up.

Every time.

Every time.

Every time.

It can be exhausting, and you might not have anyone in your life who knows that you’re even battling like this.  Those who have a strong support system in place are fortunate; it helps, a lot.  But whether it’s something others know about or not, it’s a demon which must be faced and conquered every time it arises.

I hope that everyone reading this has their own support system to keep them going.  Friends and family, online or off, who can cheer them on.  Who can give them the push or pull they need.  We all need help from each other; there’s absolutely nothing wrong with asking for or receiving help.

Asking for help can seem more daunting than fighting the beast holding you down.  But do it.  No matter who is reading this, you have people in your life who love you, who care about you, who want you to succeed, who will extend the hand you need to get you through this.

Whether it’s an internal struggle no one else will ever see or you have countless loving people help guide you through your troubles, we must rise every time we get knocked down.

Every time.

We Rise Again - © Sarah Allegra

We Rise Again – © Sarah Allegra

If you need help and you don’t feel comfortable approaching anyone you know, you can always talk to The Samaritans.  You can call them, email them or even text them.  They have people around 24/7 to help you through whatever you’re facing and it’s completely confidential.  They are well trained and caring.  Give them a try if you’re in need of someone to talk to!  I can personally vouch for how much they help.

 

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