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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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The mystery image revealed!

I’m so happy so many of you have joined in my print giveaway!  There is still time for you to enter, which is free and easy to do!  Scroll down below for details, but most of the ways you enter are simply by sharing/retweeting messages onto various social media outlets – all of which are now embedded in this post!  Just head down to the very end and you’ll see all the different ways you can participate without even leaving this page!

If you missed my last post, let me summarize it for you.  Today, May 12th is Invisible Illness Day; a day we dedicate to raising awareness about illnesses and diseases which can be deadly and have devastating consequences, yet show little to no outward sign.  Every single person with any of these illnesses, such as fibromyalgia, Chronic Fatigue Syndrome,  rheumatoid arthritis, Lyme disease, lupus, multiple sclerosis and Crohn’s Disease, (and, of course, myalgic encephalomyelitis, or ME, which I have*) has been told at least once, “But you don’t look sick.”  As if that invalidates our decades of suffering.  Oh, I’m sorry I didn’t meet your criteria of what a “chronically ill” person looks like; you’re right, I’m 100% fine!  In fact, I’m going to go complete a decathlon, now that I know I’m healthy.

Ok, so clearly simply not appearing outwardly sick doesn’t mean we aren’t ill.  In fact, most people who saw me on the street would probably assume I was a perfectly healthy girl; although one who doesn’t put a lot of effort into her appearance.  The reality is that I am partially house-bound, I can only drive short distances on very good days, almost all “out of the house” errands have to be done on weekends when Geoff can drive and help me, I’m in constant pain and exhausted every single second of my life.  My energy reserves are very low and I have nothing extra to spare on “getting pretty” before I go out.  As long as I’m wearing actual clothes (you have no idea how many times I’ve almost left my house without key clothing items), that’s enough for me.  Shove on a hat so I don’t have to address my naturally curly hair and I’m good!

While I never overly cared about what I looked like in public, I do find myself missing wearing pretty things.  I put far, far more thought and effort into picking out my pajama outfits that my regular clothes outfits.  I’ve accrued quite a collection of PJs at this point, so I can at least feel like those are cute and colorful.

While worrying about one’s physical appearance would seem pretty far down on the priority list of someone with a neurological disease with no cure, and it is for me most of the time, it’s a little more than that.  It’s just one more tiny slice of normal life that chronic illness takes away from you; one more reason for you to resent it.  I don’t actually want to wear the dresses getting dusty in my closet, I want the option to choose to wear them.  That make seem like a small difference, but from this side, it feels big.

While I don’t feel like I can spare the energy for looking beautiful most of the time, beauty is still deeply important to me, and it’s important that I leave the world with more beauty in it than I found it.  It’s like when you go camping with your dad; the camp site is going to be cleaner when you leave than when you got there (or at least, that’s how it was with me dad ;)).  I’ve come to realize that beauty is a big part of why I’m so drawn to art and to create; it’s a very tangible way of leaving the world a little more beautiful.  And in this case, it’s taking the hideous ugliness of disease and transmuting it into something lovely.

With that in mind, I want to introduce my latest image to you; the one I will be giving away a 10″ x 15″ print of on May 29th!

I spoke to you a bit in my last post about why this image is so special… and I’m going that a little bit again 🙂  For one thing, this is a DreamWorld and Enchanted Sleep crossover piece; the first image of mine which belongs equally to both worlds.  It spoke to me on both levels, and when I was torn about which series to include it in, I finally decided I didn’t HAVE to choose and it could live in both.  Because, while in some ways, DreamWorld is a bit of escapism and fantasy for me, it is not all sunshine and rainbows.  Not many of its dark characters have been photographed yet, but they will be introduced over time.  Even with their benevolent protectors, their King and Queen, the creatures in DreamWorld still have problems.

At the same time, it helps me to look at ME through the lens of myth and fantasy.  Viewing it as a dragon to be slain, a mountain to climb, a thorn in my side to bear; they all help me live with the reality of ME a little more easily.

I have long felt a connection between the stories of Sleeping Beauty and my experience with ME.  A poison, an enchanted sleep (giving birth to my photo series’ title), hope of an awakening under the right conditions… there is a great deal of overlap.  With that said, let me show you the new image!

A Poisoned Sleep And Kissless Dreaming Sarah Allegra - model: Katie Johnson

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

Now, this file ended up being a composite of… I don’t even know how many images.  A LOT.  To give you an idea of the huge scale of the piece, here it is with a normal, full-sized image from another shoot with Katie on top of it.

A Poisoned Sleep And Kissless Dreams/Perennial Parisol  © Sarah Allegra - model: Katie Johnson

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

So, just roughly eyeballing it, I’d say this is, what, 5-6 times the size of an average image?  And while my camera doesn’t produce the HUGEST files imaginable, this is still pretty darn big.  It was such an enormous file, I had to wait until I’d upgraded my laptop before I could actually work on it.  Any time I tried to edit it on my old laptop, it would crash my whole computer after about 10 minutes of work.  With my new laptop, it only crashes every few days, and usually only crashes Photoshop, instead of my entire system.  Much better 🙂  All said, this took almost two years from start to finish.  I’d pick it up, do a little work, get overwhelmed and put it back down.  Then I decided it had to be done in time for the giveaway, so that gave me the motivation to finish it up.

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

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

Katie really endured a lot for this shot, poor thing.  The area I shot it in was a naturally ivy-covered area of my old yard… and unfortunately also FULL of spiders and spider webs.

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

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

I’d made a homemade spider repellent (nothing which would harm them, just something with tea tree oil to make the area less appealing to a few days) and sprayed it liberally around the shooting area in the days leading up to the shoot.

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

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

But despite it, it was a pretty intimidating place to ask any sane girl to lay down in, relax, close her eyes and pretend to be asleep.  I promised Katie that I would watch for any spiders actually crawling on her and scoot them off.  I promised no harm would come to her, and, bless her, she trusted me.

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

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

Now despite it being just covered in cobwebs and spiders, I ended up having to add all the cobwebs in Photoshop.  I downloaded a special Photoshop bundle of brushes shaped like cobwebs, which got me started.  It took a ton of manipulation of each little bunch to make it look like it way laying naturally over the different areas, adding light and shading to blend it in to the environment.

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

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

After I got Katie situated, I climbed up on a ladder and started shooting.  But I quickly realized that the ladder wasn’t tall enough to get the framing I wanted, which led to shooting about a million individual frames which I pieced together in Photoshop, which is why it’s such a huge file.  There were some challenges in making everything align since I wasn’t using a tripod, but it helped that Katie had trusted me so completely and was lying perfectly still.

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

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

I had also shot a purple smoke bomb pouring out of the bottle (separately from Katie, I didn’t think that would be good for her to breath) but then that ended up not really looking right either, leading to another element I had to create in Photoshop.

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

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

I always try to do as much work in camera as possible, but sometimes the real world just doesn’t accommodate you!

Katie’s bravery and willingness to do whatever it took to get “the shot” made me create this virtual plaque for her:Slogan 1

Thank you, Katie 🙂  This image would not exist without you.  It’s one of my very favorite images and I’m SO happy we went through all the difficulties of making it, even though I wanted to tear my hair out at times!

Another thing about this image that’s special is that it will be the first to be printed on my new, museum-quality paper of choice: Hahnemuhle pearl paper.  You really have to see it to believe it.  It is a thick, luscious paper with a bit of texture to it, similar to watercolor paper.  What pushed me over the edge into switching to this paper though, is the very subtle, pearlescent shimmer built into the paper.  It is magic.  And it compliments the ethereal nature of my work so well, it seemed we were made for each other.

And did I mention that this special new print is a $400 value?

Would you like to win this very special print for yourself?  Instructions are below!  If you already saw my first post, skip on to the info about how to enter, if not, please consider taking a moment to read it and see why I’m so passionate about promoting May 12th and my giveaway!

 

The Blue Ribbon © Sarah Allegra, Model: Katie Johnson.  ME's awareness ribbon color is blue.

The Blue Ribbon © Sarah Allegra, Model: Katie Johnson. ME’s awareness ribbon color is blue.

 

My Kingdom Of ME video –

I would like to say that I spent a great deal of reflection on coming up with the idea of my bed being my kingdom, but it was more of a response to thinking, “Shit, I have this video… now I need a name for it…”  But I think it holds true despite it’s spur-of-the-moment conception.

When you spend the vast majority of your time inside your house, it becomes your entire world.  If, on a good day, I take Calantha for a walk around the block, I feel like a Viking setting off to explore new lands (but not planning on Blood Eagle-ing anyone).  If my house is my world, my bedroom is my home, and my bed becomes my kingdom.

Though it is a queen-sized kingdom, it is a kingdom nonetheless.  This is where I am most myself, most honest, most raw, most pure.  I spend most of my time here, in my PJs, hair a mess and no makeup (because who’s going to see it, I don’t feel like putting it on, and I especially don’t feel like washing it off).  This room is most set up for my comfort and is bent to my will.  Why is there such a huge pile of stuff always on my nightstand, or next to my side of the bed?  Because then I can reach it easily, no matter what state I’m in.  Geoff’s side is spick and span, while mine is a crazy jungle, but that’s how it has to be.  In this whole world of things which cause us pain and discomfort, we need there to be someplace that is designed for us.  That is, usually, our beds.  And in my bed, I rule.

In Between Awake And Asleep - © Sarah Allegra

In Between Awake And Asleep – © Sarah Allegra, a self portrait

My art and my Enchanted Sleep series –

Some people are surprised to learn I have a chronic illness, especially one which confines me to my house and bed so much, since I seem to produce a lot of art.  It’s all the result of very careful planning of everything.  I keep my shoots very short and I plan several concepts I can shoot one right after the other while I have my model.  My shoot is usually the only major thing I have planned for the week.  Actually, it’s usually the only major thing I have planned that month.  If we’re driving to a location, my model will usually drive us since I’m often feeling too tired.  I try to bang out as many concepts as I possibly can, then I crash.  Usually the next two or three days will be awful, and I will pay dearly for my shoot.  But after that starts to wear off, I can sort through my images and work on editing them… which is only possible because I can do that with my laptop while lying in bed.  If I had to sit at a desk, I could not be a photographer.

Using my laptop and my Wacom tablet, I can create art again.  There was a while as I was getting sick where I was truly terrified that art would be taken away from me.  In one sense, that did happen, since I had to put away the pencils and paintbrushes which became too painful to wield, but art abhors a vacuum as much as nature does, and photography quickly sprang up in its place, with help from my photographer husband.

Photography has given me a voice.  But it’s more than that.  It’s given a voice to all of us who suffer from these invisible illnesses.  When I started shooting the images which would become a part of my Enchanted Sleep series, portraying what life with ME is like, I never dreamed that other people with illnesses would flock to it like they have.  I unintentionally tapped into an underserved community, and those within it have made their approval loudly known.  I didn’t set out to capture anything but my own experiences, but in doing so, I captured all of ours.

Spoon Theory - a self portrait

Spoon Theory © Sarah Allegra  –  a self portrait

This is why you should care –

ME alone effects millions across the globe.  There are millions and millions more who bear other invisible illnesses, and you might have no idea that they carry these with them everywhere they go.  Most likely, you know someone with one of these illnesses, though it might be undiagnosed.  Most of the invisible illnesses tend to be diagnoses of exclusion; meaning there’s no one test for this disease, so you have to rule out EVERYTHING else that it could be before you decide what it is.  It’s a long, grueling process, and not everyone really wants to know what’s wrong with them anyway.  For me, I couldn’t stand not knowing.

Your aunt who often complains of pain?  Your friend who frequently has to cancel plans?  Your sibling who gets migraines which always come at the worst times?  They may have one of these diseases.

The online chronic illness community (spoonies, we call ourselves) is extremely supportive, but we need to have healthy people on our side too.  We need real changes to be made in the world, and frankly, we are too ill to do it all on our own.

These are not diseases which merely dampen our fun or mildly cramp our style, these are diseases which kill.  Sometimes that death is a suicide, as the patients cannot stand the suffering any longer.  Even if left to more “natural” courses, these illnesses are evil thieves and rob us of years.  They take away our livelihood, our joys, our passions and, eventually, our lives.

How many more of us have to die before the world pays attention?

Unjust © Sarah Allegra - model: Aly Darling

Unjust © Sarah Allegra – model: Aly Darling

A Fading Girl © Sarah Allegra, model: Brooke Shaden

A Fading Girl © Sarah Allegra, model: Brooke Shaden

This is how you enter –

Here’s how this giveaway works.  It’s going to be very easy and there are quite a lot of ways for you to enter!

First thing: subscribe to my blog if you haven’t already.  There’s a button in the upper right-hand section of the screen for you to enter your email address (which you may do safely, without fear of spamming or other annoyances).  Do that, then move on to step two:

You have your choice here!  You can either:

  • Retweet the facts I’ve tweeted about ME (these are embedded at the bottom of this post to make things super easy – you can like or retweet it without even leaving this page!)
  • Like me on Facebook and share my Kingdom Of ME post on Facebook
  • Follow me on Instagram and re-Gram my Kingdom of ME Instagram post
  • (The Facebook and Instagram posts and tweets are all embedded at the bottom of this post to make things super easy – you can like, retweet or share it without even leaving this page!)
  • Like and re-blog this post if you’re a WordPress user

You can do all of those, too!  One note, if you choose to retweet any of my tweets, each new retweet will count as an entry.  I’ve given you quite a lot to choose from, mainly because I couldn’t narrow it down myself any more!  😉  So, for example, if you retweet all 11 tweets, that will count as 11 entries for you.  However, if you retweet the same tweet more than once, that does NOT count at as extra entry.  The maximum possible Twitter-related entries you can get is 11.  The same idea goes for the other social networking sites too.  If you share my Facebook post, that’s an entry.  If you share the same post twice (which I’m not sure you can do, but let’s say for argument’s sake that you can), then you still only get one entry.

And lastly, whichever social media platform you decide to use to enter the contest from, you must like/follow me there (and here on the blog) for the entry to count!

We Rise Again - © Sarah Allegra

We Rise Again – © Sarah Allegra, a self portrait

And a couple of other ways to enter –

Now, those are all very important ways for you to enter the contest to win a gorgeous print for yourself.  A large part of why the entries are based in social media is to help raise more awareness about ME (and other invisible illnesses) by word of mouth.  However, there is another way you can get more entries for yourself.

Any purchases on ANY of the items I sell from today, May 4th, through midnight, PST, May 27th will count as entries!  This means that EACH INDIVIDUAL ITEM that you buy counts as its own entry.  If you buy five t-shirts from my Red Bubble shop, that’s five extra entries for you!

And on top of the purchases going toward extra entries for you, 25 PERCENT of ALL PROFITS on ALL ITEMS purchased will be donated to the Microbe Discovery Project!  The Microbe Discovery project is a wonderful organization here in the US actively looking for a cause and cure for ME.  I strongly believe in what they do, which is why I have chosen them to benefit from my sales.

It’s a very win-win situation!  You get to buy whatever it is that you’ve had your eye on, you get extra entries into the print giveaway and ME research is supported at the same time!

On May 29th, I will randomly pick one winner from all the entries and that person will receive the print!  It will be signed and numbered and shipped to wherever you live, even if it’s the other side of the world!  🙂

One last note about purchases, if you make a purchase, please leave a comment here on the blog and tell me what you purchased and where it was from.  Some of the sites I sell through hide the buyer’s info from me, so I won’t always be able to tell who bought what.  I want to make sure your purchases are properly accounted for!

Martyrs To A Name © Sarah Allegra - models myself and Aly Darling

Martyrs To A Name © Sarah Allegra – models: myself and Aly Darling

This is what I sell –

So, that probably leaves you wondering, what is it that I sell?  Well, quite a lot of things, actually!

I sell museum-quality fine art prints both through my Etsy shop and my gallery representative.

Prices are the same regardless of where you buy, so there’s no need to worry about having “hiked-up gallery prices” 🙂  My Etsy shop also has a few pieces of “wearable art,” some of which is inspired by DreamWorld characters and some of which was inspired by The Last Unicorn!  There’s also a whole section of ME-inspired images from my Enchanted Sleep series!

Through my Red Bubble shop I sell all of the following items with my images on them:

Aly took and sent me this other lovely shot of her bag!

Aly took and sent me this lovely shot of her carrying her tote bag!  It was a bit strange at first to see my friend carrying a bag with my face in it 😉  We we both quite thrilled with the quality and according to Aly, it’s been getting tons of compliments and the straps are the perfect length!

And for something even more special, I also host a very unique online photography class,  INTROSPECTIVE: A Photographic Quest.

INTROSPECTIVE is much more about self-discovery than it is about knowing what f-stops are or having fancy equipment.  You don’t even have to have an actual camera; your phone will do perfectly well!  The course emphasizes self portraits as a way to get to know yourself better, but the definition of “self portrait” here is quite loose.  You never have to appear in an image unless you really want to.  What I mean by “self portrait” in this case is simply any photograph which shows me something about who you are as a person!
This is a very relaxed, reflective class.  There are no grades and no wrong answers!  For eight weeks, you will receive a new theme each week and your assignment will be to create an image around that theme which reflects you.  Love, joy and fears, for example, are all things you would be asked to create around.

This class is very unique!  I modeled it after my own journey of self-discovery as I started taking self portraits.  The art therapy was so helpful and healing to me that I wanted to give that back to the world in some way, so I created INTROSPECTIVE!

And as an extra bonus, here’s a special coupon code for INTROSPECTIVE!  Use the code May12ME25 to take 25 percent off the cost of the course!  Now that’s a win-win-win!!

Silenced © Sarah Allegra, model Travis Weinand

Silenced © Sarah Allegra: model Travis Weinand

Wrapping up –

I know you guys hear me talk about ME quite a lot, but here’s the thing.  It matters.  It really, really fucking matters.

There is so much confusion, misunderstanding and so many flat-out lies about ME that we all need to work extra hard to shine the light of truth on it.  It’s not all the public’s fault; after all, they’ve been lied to by medical professionals for decades.  It all came unraveling  in the 80’s when ME’s name was intentionally changed to “Chronic Fatigue Syndrome” and given the belittling nicknames of “the yuppie flu,” “the disease of depressed, menopausal women” and, more recently, “fat, lazy housewife disease,” just so insurance companies could deny patients coverage.

ME does not discriminate.  It does not target people by color ,gender, social status or age.  It attacks anyone and everyone it can.  It destroys lives.  It brings promising careers to grinding halts.  It is not a way to “get a free ride;” we struggle just to sit up and get out of bed.

It could be your sister.  It could be your boyfriend or girlfriend.

It could you.

How many more lives have to be sacrificed on the alter of insurance companies’ desires to not pay out before we get change?  How many more patients have to take their own lives in despair?  How many more seriously ill patients have to endure the most hateful slurs you can imagine being thrown at them?  How many doctors will sigh, roll their eyes and tell us there’s nothing wrong with us psychically, that our problems are all in our heads?

No more.

We cannot let this happen to one more person.  Too many have endured this already.

We have the power to make radical changes.  We have the power to change society’s view of us, to force the government to give us proper funding, to stop treating us like Cinderella instead of their own daughters.  We have the power to unlock the mystery of ME and find a cure.  We CAN do this.  But we must come together, make our voices heard and DEMAND it.  It will never be easily handed to us.  Too many huge companies are invested in not spending any money on those with ME.  But while history shows us many ugly truths, it also shows us that we, the common people, have great power in our hands to bring about the changes we want.

We just have to ask for it loudly enough.

Please join me in demanding change for patients with ME.  Things cannot continue the way they are any longer.

And as you help me advocate for invaluable change in the world, you’ll also be giving yourself a chance to win a gorgeous, fine art print 🙂  Help me with this.  And thank you.

Embedded tweets are just below!

[tweet https://twitter.com/sarahallegra/status/595063967409516545 ]

[tweet https://twitter.com/sarahallegra/status/595063916524216320 ]

[tweet https://twitter.com/sarahallegra/status/595063812086071298 ]

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My Kingdom of ME – This self portrait is actually the cover image for a
video I made about May 12th, ME and me. May 12th is known as Invisible
Illness Day. A day to raise awareness about diseases which may have
devastating impacts on peoples' lives, yet may not show any outward signs.
Diseases like ME, which I have. I'm holding a print giveaway for a brand
new image which will be revealed on the 12th to help raise awareness!
Please see my blog for info on how you can enter. It's easy and free!
https://sarahallegra.wordpress.com/2015/05/05/my-kingdom-of-me-and-a-print-giveaway/ #myalgicencephalomyelitis #ME #MECFS #chronic #fatigue #pain #disease #illness
#video #promotion #print #giveaway #blog #youtube
#selfportrait #awareness #giveaway #May12
#InvisibleIllnessDay #fibro #CFS #neurologic #migraine #raw #honest #real
#fineart #DreamWorld #change #hope #queen

A post shared by Sarah Allegra (@artosthebear) on

3 Good Days

3 Good Days © Sarah Allegra, a triple self portrait

Footnote

[*Because the United States does not officially recognize the name “myalgic encephalomyelitis,” despite decades of public outcry for change and hundreds of thousands signing petitions, they continue to stick to “Chronic Fatigue Syndrome” or “fibromyalgia.”  Depending on which doctor of mine you talk to, I may have three different diagnoses.  The US is especially complicated in how it defines – or, rather, it’s lack of definition – the differences between the three so it’s impossible to talk about one in the US without talking about all of them.  For the record, they are NOT all the same disease, but that is essentially how the US treats them.  I know that what I have is ME and not the other two, but many of my doctors had not have heard of ME until I told them about it.  ME has scientific, diagnosable guidelines, which I fit, but the country still refuses to adopt the name and its excellent guidelines.  If you’re interested in learning more about why this is, here’s an article for you, but for this post, I will leave the subject there.]

 

 

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The Blue Ribbon © Sarah Allegra, Model: Katie Johnson.  ME's awareness ribbon color is blue.

The Blue Ribbon © Sarah Allegra, Model: Katie Johnson. ME’s awareness ribbon color is blue.

May 12th – what is it?

We are rapidly approaching May 12th.

Why is that important?

May 12th is recognized across the globe as Invisible Illness Day.  Though most people are unaware of its significance… which is part of the problem.

It’s a day for bringing more awareness to diseases like fibromyalgia, Chronic Fatigue Syndrome,  rheumatoid arthritis, Lyme disease, lupus, multiple sclerosis and Crohn’s Disease, along with many others.  Diseases which can have horrific, devastating effects on the person’s life, yet may not outwardly show.  They can be completely disabling, and the patient still looks “normal” to the world.

And of course, this list includes myalgic encephalomyelitis, or ME, which I have.*

What ME is –

I’ve spoken quite a lot about ME on my blog, so a lot of you probably know the basics of it.  But for anyone new, here’s a quick summary.  ME is a neurological disease defined, in part, by:

  • Profound fatigue which is unrefreshed by rest and sleep.
  • Chronic pain, which can occur anywhere in the body, but is especially common in muscles and joints.
  • Insomnia and other sleep disturbances, despite your constant exhaustion.
  • Post-exertional malaise (meaning you feel worse after you exert yourself — and the exertion can be as simple as a trip to the grocery store or walking to your mailbox).
  • Neurological problems, a.k.a. “brain fog.”  This can manifest in the form of sudden clumsiness, tripping and falling, being unable to recall a word you knew just a second ago, suddenly forgetting how to read or write, forgetting your name… you get the idea.
  • Headaches of new or worsening kinds (I never had migraines until ME started sinking its talons into me).
  • Dysfunctional immune systems (if there’s a cold going around, I will get it).
  • Hyper-sensitivity to any and all stimuli — I describe it as the volume in my brain being turned up to “11.”  Noises are very loud to me, lights are bright, smells overwhelming… the scent sensitivity means that anything artificially fragranced makes me nauseated, but it has led to me find small, unnoticed gas leaks inside houses on several occasions.
  • Post-Exertional Neuroimmune Exhaustion (your brain functions worse in every way after even minimal efforts — mental or emotional efforts as well, not strictly physical ones).
  • Low threshold of physical and mental fatigue (lack of stamina) resulting in a substantial reduction in pre-illness activity level — things you did before you were sick are now out of the question.

And so on.  Because ME affects every system of the body, in a way somewhat similar to multiple sclerosis, the symptoms can vary from person to person, but these are the classic signposts of the disease.

I have what would be defined as a “moderate” case of ME.   A mild case would be someone who could still maintain a somewhat normal life, but would probably need extra recovery time after big events, help lifting heavy objects, etc.  Moderate, like what I have, is someone who can’t work a normal job, is partly or completely house-bound, may not be able to drive and has a great deal of their life impacted by the disease.  Their world becomes much, much smaller and quieter.  Severe cases… you wouldn’t wish them on your worst enemy.  These are people who are completely bed-bound, unable to care for themselves in the most basic ways, unable to tolerate any light, sound or touch.  They lay in dark rooms in silence, often on morphine drips for their severe pain… and this can last for decades.  It’s been described as “a living death,” and for good reason.  It’s truly horrifying.  This is often the time when patients try to take their own lives.

Vanity's Murder - © Sarah Allegra

Vanity’s Murder © Sarah Allegra, a self portrait

My Kingdom Of ME video –

I would like to say that I spent a great deal of reflection on coming up with the idea of my bed being my kingdom, but it was more of a response to thinking, “Shit, I have this video… now I need a name for it…”  But I think it holds true despite it’s spur-of-the-moment conception.

When you spend the vast majority of your time inside your house, it becomes your entire world.  If, on a good day, I take Calantha for a walk around the block, I feel like a Viking setting off to explore new lands (but not planning on Blood Eagle-ing anyone).  If my house is my world, my bedroom is my home, and my bed becomes my kingdom.

Though it is a queen-sized kingdom, it is a kingdom nonetheless.  This is where I am most myself, most honest, most raw, most pure.  I spend most of my time here, in my PJs, hair a mess and no makeup (because who’s going to see it, I don’t feel like putting it on, and I especially don’t feel like washing it off).  This room is most set up for my comfort and is bent to my will.  Why is there such a huge pile of stuff always on my nightstand, or next to my side of the bed?  Because then I can reach it easily, no matter what state I’m in.  Geoff’s side is spick and span, while mine is a crazy jungle, but that’s how it has to be.  In this whole world of things which cause us pain and discomfort, we need there to be someplace that is designed for us.  That is, usually, our beds.  And in my bed, I rule.

In Between Awake And Asleep - © Sarah Allegra

In Between Awake And Asleep – © Sarah Allegra, a self portrait

My art and my Enchanted Sleep series –

Some people are surprised to learn I have a chronic illness, especially one which confines me to my house and bed so much, since I seem to produce a lot of art.  It’s all the result of very careful planning of everything.  I keep my shoots very short and I plan several concepts I can shoot one right after the other while I have my model.  My shoot is usually the only major thing I have planned for the week.  Actually, it’s usually the only major thing I have planned that month.  If we’re driving to a location, my model will usually drive us since I’m often feeling too tired.  I try to bang out as many concepts as I possibly can, then I crash.  Usually the next two or three days will be awful, and I will pay dearly for my shoot.  But after that starts to wear off, I can sort through my images and work on editing them… which is only possible because I can do that with my laptop while lying in bed.  If I had to sit at a desk, I could not be a photographer.

Using my laptop and my Wacom tablet, I can create art again.  There was a while as I was getting sick where I was truly terrified that art would be taken away from me.  In one sense, that did happen, since I had to put away the pencils and paintbrushes which became too painful to wield, but art abhors a vacuum as much as nature does, and photography quickly sprang up in its place, with help from my photographer husband.

Photography has given me a voice.  But it’s more than that.  It’s given a voice to all of us who suffer from these invisible illnesses.  When I started shooting the images which would become a part of my Enchanted Sleep series, portraying what life with ME is like, I never dreamed that other people with illnesses would flock to it like they have.  I unintentionally tapped into an underserved community, and those within it have made their approval loudly known.  I didn’t set out to capture anything but my own experiences, but in doing so, I captured all of ours.

Spoon Theory - a self portrait

Spoon Theory © Sarah Allegra  –  a self portrait

This is why you should care –

ME alone effects millions across the globe.  There are millions and millions more who bear other invisible illnesses, and you might have no idea that they carry these with them everywhere they go.  Most likely, you know someone with one of these illnesses, though it might be undiagnosed.  Most of the invisible illnesses tend to be diagnoses of exclusion; meaning there’s no one test for this disease, so you have to rule out EVERYTHING else that it could be before you decide what it is.  It’s a long, grueling process, and not everyone really wants to know what’s wrong with them anyway.  For me, I couldn’t stand not knowing.

Your aunt who often complains of pain?  Your friend who frequently has to cancel plans?  Your sibling who gets migraines which always come at the worst times?  They may have one of these diseases.

The online chronic illness community (spoonies, we call ourselves) is extremely supportive, but we need to have healthy people on our side too.  We need real changes to be made in the world, and frankly, we are too ill to do it all on our own.

These are not diseases which merely dampen our fun or mildly cramp our style, these are diseases which kill.  Sometimes that death is a suicide, as the patients cannot stand the suffering any longer.  Even if left to more “natural” courses, these illnesses are evil thieves and rob us of years.  They take away our livelihood, our joys, our passions and, eventually, our lives.

How many more of us have to die before the world pays attention?

Unjust © Sarah Allegra - model: Aly Darling

Unjust © Sarah Allegra – model: Aly Darling

A DreamWorld/Enchanted Sleep crossover print giveaway!

I try to always do something around May 12 to help bring awareness to ME and its sister diseases.  This year, I’m going to be giving away a print of a brand-new image… one which won’t be revealed until May 12th itself.  It’s going to be a really, really great image though, I can promise you 🙂

This one will feature model Katie Johnson, and it’s so complicated, I’ve been working on it on and off for about two years.  I had to put it aside for a long time until I upgraded my laptop.  The file size was SO huge, I could only work on it for about ten minutes before it would crash my entire computer.  Obviously, that didn’t work for me.  It’s still a monster of a file, but on the new machine it only crashes Photoshop every few days, which is much better..

This image will be very unique in that it straddles both DreamWorld and Enchanted Sleep, a foot in each world like the Pillar of Hercules.  No other image of mine does this.  It will be a first on several fronts!

Another thing about this image that’s special is that it will be the first to be printed on my new, museum-quality paper of choice: Hahnemuhle pearl paper.  You really have to see it to believe it.  It is a thick, luscious paper with a bit of texture to it, similar to watercolor paper.  What pushed me over the edge into switching to this paper though, is the very subtle, pearlescent shimmer built into the paper.  It is magic.  And it compliments the ethereal nature of my work so well, it seemed we were made for each other.

Did I mention that this special new print is a $400 value?

Is your interest peaked?  Want to win the print for yourself?  Instructions are right below.  🙂

A Fading Girl © Sarah Allegra, model: Brooke Shaden

A Fading Girl © Sarah Allegra, model: Brooke Shaden

This is how you enter –

Here’s how this giveaway works.  It’s going to be very easy and there are quite a lot of ways for you to enter!

First thing: subscribe to my blog if you haven’t already.  There’s a button in the upper right-hand section of the screen for you to enter your email address (which you may do safely, without fear of spamming or other annoyances).  Do that, then move on to step two:

You have your choice here!  You can either:

You can do all of those, too!  One note, if you choose to retweet any of my tweets, each new retweet will count as an entry.  I’ve given you quite a lot to choose from, mainly because I couldn’t narrow it down myself any more!  😉  So, for example, if you retweet all 11 tweets, that will count as 11 entries for you.  However, if you retweet the same tweet more than once, that does NOT count at as extra entry.  The maximum possible Twitter-related entries you can get is 11.  The same idea goes for the other social networking sites too.  If you share my Facebook post, that’s an entry.  If you share the same post twice (which I’m not sure you can do, but let’s say for argument’s sake that you can), then you still only get one entry.

And lastly, whichever social media platform you decide to use to enter the contest from, you must like/follow me there (and here on the blog) for the entry to count!

We Rise Again - © Sarah Allegra

We Rise Again – © Sarah Allegra, a self portrait

And a couple of other ways to enter –

Now, those are all very important ways for you to enter the contest to win a gorgeous print for yourself.  A large part of why the entries are based in social media is to help raise more awareness about ME (and other invisible illnesses) by word of mouth.  However, there is another way you can get more entries for yourself.

Any purchases on ANY of the items I sell from today, May 4th, through midnight, PST, May 27th will count as entries!  This means that EACH INDIVIDUAL ITEM that you buy counts as its own entry.  If you buy five t-shirts from my Red Bubble shop, that’s five extra entries for you!

And on top of the purchases going toward extra entries for you, 25 PERCENT of ALL PROFITS on ALL ITEMS purchased will be donated to the Microbe Discovery Project!  The Microbe Discovery project is a wonderful organization here in the US actively looking for a cause and cure for ME.  I strongly believe in what they do, which is why I have chosen them to benefit from my sales.

It’s a very win-win situation!  You get to buy whatever it is that you’ve had your eye on, you get extra entries into the print giveaway and ME research is supported at the same time!

On May 29th, I will randomly pick one winner from all the entries and that person will receive the print!  It will be signed and numbered and shipped to wherever you live, even if it’s the other side of the world!  🙂

One last note about purchases, if you make a purchase, please leave a comment here on the blog and tell me what you purchased and where it was from.  Some of the sites I sell through hide the buyer’s info from me, so I won’t always be able to tell who bought what.  I want to make sure your purchases are properly accounted for!

Martyrs To A Name © Sarah Allegra - models myself and Aly Darling

Martyrs To A Name © Sarah Allegra – models: myself and Aly Darling

This is what I sell –

So, that probably leaves you wondering, what is it that I sell?  Well, quite a lot of things, actually!

I sell museum-quality fine art prints both through my Etsy shop and my gallery representative.

Prices are the same regardless of where you buy, so there’s no need to worry about having “hiked-up gallery prices” 🙂  My Etsy shop also has a few pieces of “wearable art,” some of which is inspired by DreamWorld characters and some of which was inspired by The Last Unicorn!  There’s also a whole section of ME-inspired images from my Enchanted Sleep series!

Through my Red Bubble shop I sell all of the following items with my images on them:

Aly took and sent me this other lovely shot of her bag!

Aly took and sent me this lovely shot of her carrying her tote bag!  It was a bit strange at first to see my friend carrying a bag with my face in it 😉  We we both quite thrilled with the quality and according to Aly, it’s been getting tons of compliments and the straps are the perfect length!

And for something even more special, I also host a very unique online photography class,  INTROSPECTIVE: A Photographic Quest.

INTROSPECTIVE is much more about self-discovery than it is about knowing what f-stops are or having fancy equipment.  You don’t even have to have an actual camera; your phone will do perfectly well!  The course emphasizes self portraits as a way to get to know yourself better, but the definition of “self portrait” here is quite loose.  You never have to appear in an image unless you really want to.  What I mean by “self portrait” in this case is simply any photograph which shows me something about who you are as a person!
This is a very relaxed, reflective class.  There are no grades and no wrong answers!  For eight weeks, you will receive a new theme each week and your assignment will be to create an image around that theme which reflects you.  Love, joy and fears, for example, are all things you would be asked to create around.

This class is very unique!  I modeled it after my own journey of self-discovery as I started taking self portraits.  The art therapy was so helpful and healing to me that I wanted to give that back to the world in some way, so I created INTROSPECTIVE!

And as an extra bonus, here’s a special coupon code for INTROSPECTIVE!  Use the code May12ME25 to take 25 percent off the cost of the course!  Now that’s a win-win-win!!

Silenced © Sarah Allegra, model Travis Weinand

Silenced © Sarah Allegra: model Travis Weinand

Wrapping up –

I know you guys hear me talk about ME quite a lot, but here’s the thing.  It matters.  It really, really fucking matters.

There is so much confusion, misunderstanding and so many flat-out lies about ME that we all need to work extra hard to shine the light of truth on it.  It’s not all the public’s fault; after all, they’ve been lied to by medical professionals for decades.  It all came unraveling  in the 80’s when ME’s name was intentionally changed to “Chronic Fatigue Syndrome” and given the belittling nicknames of “the yuppie flu,” “the disease of depressed, menopausal women” and, more recently, “fat, lazy housewife disease,” just so insurance companies could deny patients coverage.

ME does not discriminate.  It does not target people by color ,gender, social status or age.  It attacks anyone and everyone it can.  It destroys lives.  It brings promising careers to grinding halts.  It is not a way to “get a free ride;” we struggle just to sit up and get out of bed.

It could be your sister.  It could be your boyfriend or girlfriend.

It could you.

How many more lives have to be sacrificed on the alter of insurance companies’ desires to not pay out before we get change?  How many more patients have to take their own lives in despair?  How many more seriously ill patients have to endure the most hateful slurs you can imagine being thrown at them?  How many doctors will sigh, roll their eyes and tell us there’s nothing wrong with us psychically, that our problems are all in our heads?

No more.

We cannot let this happen to one more person.  Too many have endured this already.

We have the power to make radical changes.  We have the power to change society’s view of us, to force the government to give us proper funding, to stop treating us like Cinderella instead of their own daughters.  We have the power to unlock the mystery of ME and find a cure.  We CAN do this.  But we must come together, make our voices heard and DEMAND it.  It will never be easily handed to us.  Too many huge companies are invested in not spending any money on those with ME.  But while history shows us many ugly truths, it also shows us that we, the common people, have great power in our hands to bring about the changes we want.

We just have to ask for it loudly enough.

Please join me in demanding change for patients with ME.  Things cannot continue the way they are any longer.

And as you help me advocate for invaluable change in the world, you’ll also be giving yourself a chance to win a gorgeous, fine art print 🙂  Help me with this.  And thank you.

Embedded tweets are just below!

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3 Good Days

3 Good Days © Sarah Allegra, a triple self portrait

Footnote

[*Because the United States does not officially recognize the name “myalgic encephalomyelitis,” despite decades of public outcry for change and hundreds of thousands signing petitions, they continue to stick to “Chronic Fatigue Syndrome” or “fibromyalgia.”  Depending on which doctor of mine you talk to, I may have three different diagnoses.  The US is especially complicated in how it defines – or, rather, it’s lack of definition – the differences between the three so it’s impossible to talk about one in the US without talking about all of them.  For the record, they are NOT all the same disease, but that is essentially how the US treats them.  I know that what I have is ME and not the other two, but many of my doctors had not have heard of ME until I told them about it.  ME has scientific, diagnosable guidelines, which I fit, but the country still refuses to adopt the name and its excellent guidelines.  If you’re interested in learning more about why this is, here’s an article for you, but for this post, I will leave the subject there.]

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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

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