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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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This is one of those things that built up slowly in my head for a while, then suddenly crystallized with numerous people and sources suddenly (unaware of each other) all started giving me the same advice.  After some thought, and a little bit of regret, I’ve decided that they are right and I need to make some changes in how I approach my art.

I need to slow down.  This is very hard for me to do; art is my obsession and I want nothing more than to be producing all that I can as often as I can.

I also need to set my focus more narrowly on DreamWorld.  There is SO MUCH that you guys have no idea about yet, and I need to get to the place where I CAN show you all that stuff!

The thing is, I have to accept that for the time being, I have very limited supplies of time, energy and money.  I’m hopeful, of course, that I will eventually start feeling better, but for now, I have to accept that this how things are right now.  My energy and time allowances have shrunk every year since I first came down with ME.  My chronic pain, daily headaches and frequent migraines don’t help anything.  Since I’m dealing with far, far fewer productive hours in the day than your average person has, I need to hoard them and make the absolute most that I can with them.  None of those minutes can be wasted.

I’m still weighing things, but I may (for now at least) not edit every shoot on my hard drive.  Don’t despair, models waiting for images, I’m not saying none of them will be edited, I just have to really pare things down and only spend the time editing images which I REALLY love.

This also means that I’ll probably be putting out fewer images per year.  This makes me sad, and is the main source of my resistance to the idea of slowing down.  It’s really hard to watch all my friends and colleagues churn out fantastic image after fantastic image and have nothing even on the radar to be shown soon.  You get used to a certain amount of being left behind by the rest of the world when you’re always sick, but it doesn’t make it sting less each new time you feel it.  I love getting to show you guy a new piece!  It’s usually the highlight of my week when I post an image.  🙂  But despite this, I know that this is the right thing for me to do now.

I’m also making some big changes with a lot of DreamWorld concepts; changes which will make the images I do create even better and more impactful, but which requires quite a lot of work on my end which and won’t produce anything I can show you guys, even as a work-in-progress sort of thing.  On one hand, I feel dangerously close to being forgotten and left behind while other artists quickly turn out magnificent pieces… but again, I know that I need to do this preliminary work.  It’s going to have a ripple effect through all of DreamWorld and the images which come from it will be better than ever!  I hope you guys will be patient and not forget about me or DreamWorld in the periods when I have nothing new to show.  🙂

Thank you all for the love and support you have shown me and my work over the years.  It really means so much more than I can say!  I am so grateful for every single person who enjoys and follows my work.  Even if I can’t put out as many images as I have in the past, I can make sure that the ones I do create are the BEST that I can do.  It may frustrate me sometimes, but the extra work I’m pouring into DreamWorld is only going to make it better, brighter, tighter, more emotional and more meaningful.  Thank you for bearing with me.

You’ll notice there isn’t a new image with this post; that’s kind of the point!

And thank you, as always, to Geoff for being an unending font of wisdom, clarity and sage advice.  🙂

A Strange New World

A Strange New World © Sarah Allegra. A self portrait, one of the first images I shot for DreamWorld. I imagine this girl has just returned to our world after years of journeying through DreamWorld only to find that not a day has passed, much like Narnia. 🙂

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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 ]

[tweet https://twitter.com/sarahallegra/status/595063863587966976 ]

[tweet https://twitter.com/sarahallegra/status/595064055624151041 ]

[tweet https://twitter.com/sarahallegra/status/595064011017695232 ]

[tweet https://twitter.com/sarahallegra/status/595064131016732672 ]

[tweet https://twitter.com/sarahallegra/status/595064174079709185 ]

[tweet https://twitter.com/sarahallegra/status/595064280401084418 ]

[tweet https://twitter.com/sarahallegra/status/595064336432771072 ]

[tweet https://twitter.com/sarahallegra/status/595063767454523392 ]

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!

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

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

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

[tweet https://twitter.com/sarahallegra/status/595063863587966976 ]

[tweet https://twitter.com/sarahallegra/status/595064055624151041 ]

[tweet https://twitter.com/sarahallegra/status/595064011017695232 ]

[tweet https://twitter.com/sarahallegra/status/595064131016732672 ]

[tweet https://twitter.com/sarahallegra/status/595064174079709185 ]

[tweet https://twitter.com/sarahallegra/status/595064280401084418 ]

[tweet https://twitter.com/sarahallegra/status/595064336432771072 ]

[tweet https://twitter.com/sarahallegra/status/595063767454523392 ]

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

Reuniting With The Stars - detail © Sarah Allegra

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

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

The Oracle  - © Sarah Allegra

The Oracle – © Sarah Allegra

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

We Rise Again - © Sarah Allegra

We Rise Again – © Sarah Allegra

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

Sleight Of Hand © Sarah Allegra

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

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

One of the baby opossums

One of the baby opossums

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

Calantha, modeling the Lady Death bonnet

Calantha, modeling the Lady Death bonnet

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

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

The Eye Of The Storm © Sarah Allegra

The Eye Of The Storm © Sarah Allegra

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

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

Inside Looking Out © Sarah Allegra

Inside Looking Out © Sarah Allegra

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

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

Where Black Stars Rise © Sarah Allegra

Where Black Stars Rise © Sarah Allegra

Lost Pride © Sarah Allegra

Lost Pride © Sarah Allegra

 

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

Water For The Free © Sarah Allegra

Water For The Free © Sarah Allegra

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

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

Lady Death © Sarah Allegra

Lady Death © Sarah Allegra

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

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

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

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

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

Tell Me A Happy Story © Sarah Allegra

Tell Me A Happy Story © Sarah Allegra

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

Etsy's front page 08/08/2014

Etsy’s front page 08/08/2014

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

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

The Blue Ribbon © Sarah Allegra

The Blue Ribbon © Sarah Allegra

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

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

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

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

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

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

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

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

Singed Wings © Sarah Allegra

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

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

Good Light Magazine Feature, image © Sarah Allegra

Good Light Magazine Feature, image © Sarah Allegra

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

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

Happy anniversary!!!

Happy anniversary!!!

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

The Fragile Blossom That Opens In The Snow © Sarah Allegra

The Fragile Blossom That Opens In The Snow © Sarah Allegra

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

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

Toward The Boiling Sun © Sarah Allegra

Toward The Boiling Sun © Sarah Allegra

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

Spring's Awakening © Sarah Allegra

Spring’s Awakening © Sarah Allegra

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

The Light Is Winning © Sarah Allegra

The Light Is Winning © Sarah Allegra

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

Jessica Trinh/Sprinkle Happiness

David Talley

Helen Warner

Chris Arnade

Tim Andrews

Kindra Nikole

Kirsty Mitchell

Brooke Shaden

Robert Cornelius

Handy Andy Pandy

Unsinn Image

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

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

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

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

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

Richness In Winter © Sarah Allegra

Richness In Winter © Sarah Allegra

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

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

Reuniting With The Stars © Sarah Allegra

Reuniting With The Stars © Sarah Allegra

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

Byron giving me his opinion while I edited Katie

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

 

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

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Something a little silly and fun for today….

One of the very cool things that Geoff and I got to do over our Christmas road trip was drive by the house used as the exterior shots of Walter White’s house in Breaking Bad.  To both of us, it was a mini pilgrimage, a holy shrine dedicated to one of the best shows television has ever produced.  (Seriously; we were talking about it the other night and couldn’t think of ONE single time the show had miss-stepped even slightly in its entire run.  What other show can you say that of?)  I brought my Heisenberg hat along the entire trip just for this one moment, and it was completely worth it.

IMG_0900

I tried to be cool, but inside I was fangirling and squealing over the fact that I WAS STANDING IN FRONT OF WALTER WHITE’S HOUSE OMG.  It ended up being a very Breaking Bad Christmas all around; AMC ran a series marathon right around Christmas, and Geoff and I both gave each other some very fun Breaking Bad gifts.  His stocking contained some “blue meth” sugar candy from a great shop on Etsy 🙂

While running the marathon, AMC’s website had some really fun Breaking Bad extras for fans to enjoy, such as a quiz which would tell you which villain you were most like.  I was perversely proud and pleased when the quiz told me I was most like Gus Fring.

Copyrights belong to AMC.

Copyrights belong to AMC.

I even saved my results because they were so fun.  And you know?  I can kind of see it.  Were I to take the path of the bad guy, I probably would be that scariest kind of quiet, seemingly peaceful villain who, when the mask is dropped, threatens to kill you, your wife, your son and infant daughter, then slits a man’s throat with a box cutter in front of you just to prove his point.

So who am I?  Gus Fring?  You’re goddamn right 🙂

All Hail The Queen, my Breaking Bad homage.

All Hail The Queen, my Breaking Bad homage.

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