Somehow I managed to miss the fact that January 24th was my photography birthday! I like to remember that date; it helps me see how I’m moving forward and assess my upcoming plans and projects.
Six years ago on January 24th, I took my first self portrait. I did it simply for the sake of doing it; I had an idea, so I executed it. I certainly never imagined I was starting down a new, wonderful path that would effect everything in my life.
Cultus Procul Meus Sanctus Templum – not actually my very first self portrait, but one from early on in that first year, and one which I’ve always felt was the first time I really felt like I’d started to find my own style.
I would like to take a moment and thank all the wonderful models whom I’ve had the great pleasure of working with over the last six years, especially those gluttons for art punishment who keep coming back shoot after shoot. Tom Nagal, Dedeker Winston, Sandy Moore, Aly Darling, Veronica Ricci, Katie Johnson and Travis Weinand (in chronological order) have all been repeat collaborators.
They have endured getting up before dawn, smiled through bitter cold, boiling heat and snow, accidentally stumbling into stinging nettles (while nude, no less – sorry, Dedeker!) and the most awkward and uncomfortable poses, props and costumes. They’ve balanced precariously on horses, stripped themselves of their clothes (and inhibitions), been gawked at by curious strangers, laid in freezing cold creeks, let me cover them with mud and dirt, dodged ubiquitous Frisbee golfers, covered themselves in flour, held their breath through smoke bombs, submerged themselves in water I can only describe generously as repulsive and waited patiently while I spent weeks and months editing their images.
And they do it all without every breaking character. These models are worth their weight in gold! I appreciate them all more than I can ever say and am so glad that they trust me to turn my weird-sounding ideas into something beautiful. They are people I can happily call friends. I know that I can always count on them to do their absolute best and I try just as hard to give them my absolute best.
An early image I shot with Dedeker, inspired by The Last Unicorn by Peter S Beagle.
I am still hard at work on the new chapter of DreamWorld! I got some important hunks of crystal, amethyst and fluorite in this case, from my dear friend Jessi, fellow spoonie and owner of the Etsy shops Mineralism Crystals for all your crystal needs, and The Hopeful Spoon, full of beautiful handmade jewelry. Thank you, Jessi! These are so beautiful and they’ll make a truly gorgeous prop for DreamWorld!
On a last note, Jessi’s beloved cat Simba is going through an expensive medical crisis. Jessi started a gofundme page to help pay for his treatment; please consider donating to it if you can! Even a small amount would mean a great deal. And of course, you can also help support the fund by purchasing items from Jessi’s shops! I’ve bought from them and I have LOVED what I’ve gotten!
Simba needs our help! Save this beautiful kitty!
I hope to have a new piece to show you guys soon! I’ve been working on it slowly between other DreamWorld things. 🙂
Some of you know that my birthday is quickly approaching; so quickly, in fact, that it hardly seems like it really is almost that time of year. It’s been such a crazy, non-stop year with seemingly one crisis and difficulty after another. I’m going to just ASSUME, universe, that the bad luck switch is getting reset on August 3rd and I will start the year fresh and free from more crisis.
I am just done with stress and poor health and putting out fires. So this next year is going to be different. I will it to be so.
I honestly don’t feel up to making a big fuss over my birthday, in any part of my life. The day of will probably consist of my favorite type of dinner – having something delivered to the house so I don’t have to change out of my PJs! (Well, I will put clothes on for my therapy appointment that morning, although my therapist is so great, I’m sure she wouldn’t care if I didn’t. But then I can change back into jammies as soon as I’m home.) No fancy dinners where you have to get dressed up with actual, nice clothes and make reservations and stay up past my bedtime… nope, just bring some food to my gate, toss it in and I’m a happy camper. There’s one silver lining to chronic illness; it makes you a cheap and easy date! 😉 Though I’ve tended to prefer this kind of evening for a long time.
So yes, mellow birthday for me. But I thought I could use the occasion to celebrate hobbit-style; instead of them giving me something, I’ll celebrate by giving gifts to my guests! That’s you guys!!
Since this is all virtual (and I’m broke) I’m not giving you physical gifts, but instead, the gift of sales! I don’t control the pricing and sales of every store I sell through, but the ones that allow me to, I’m giving you guys some codes to snatch up that pretty thing you’ve had your eye on at a discount 🙂
I sell museum-quality fine art prints through my Etsy shop; right now, save 30% on ALL prints!
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!
And for something even more special, I also host a very unique online photography class, INTROSPECTIVE: A Photographic Quest. Enter code INTROBDAY50 to get 30% off the course!
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!
Oh, I almost forgot, I’ve been waiting to share this new info with you guys! I recently opened a shop on Fiverr! Right now I don’t have all the gigs up I’m planning on, but there are a few up. A couple Reiki-related and others involve me giving you original textures that you can use on your photos, even commercial ones! If you’re new to Fiverr, get ready to fall in love. Fiverr is a site where people post gigs which all cost… you guessed it, $5. They may have additional features you can add on which might cost more, but the basic service they advertize always costs just $5. I’ve found them extremely helpful and useful ever since I found out it existed a few months ago. You can literally find ALMOST ANYTHING there for $5. It’s pretty amazing. So I figured I’d get in on the fun!
Since I’m still fighting off a stupid summer cold, I’ll end this here. I can tell you that any sales I can make would be hugely appreciated. Not only is it just very expensive to living day to day with chronic illnesses (and Maynard has had to go the vet a lot recently) but I’d also like to start saving up for some really needed equipment and cool projects! Please use and enjoy the coupons from now until September 1st! Celebrate my birthday with presents for you all month long 😀
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!
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.
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.
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.
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.
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.
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.
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.
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.
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:
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!
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.
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 verycareful 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.
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.
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!)
(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!
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 theMicrobe 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!
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 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!
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 createdINTROSPECTIVE!
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!!
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.
[*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.]
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 spokenquite a lotabout MEon 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.
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.
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 verycareful 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.
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.
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. 🙂
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 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!
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 theMicrobe 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!
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 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!
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 createdINTROSPECTIVE!
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!!
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.
[*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.]
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.
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.
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.
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.
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
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
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.
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!
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!
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!
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!
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
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:
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:
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!!!
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.
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.
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.
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 🙂
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.
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 🙂
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.
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.
Just a quick entry from me as I enjoy my Christmas Eve with my family and loved ones. I had a couple new features come out in the past few days, and I always try and post about them here as well as my other social media outlets. It just seems like the polite thing to do when someone goes to the trouble of talking about my work!
Firstly, we have Slovak Art Magazine. They ran a lovely feature on my work in their latest issue, #13.
There is some really outstanding artwork in the magazine, so it is well worth looking at on its own and not just to see my work 😉
Second, I’m really pleased to say that one of my images won a contest sponsored by Good Light! Magazine. The theme was People and Water, so I thought one of my underwater images from my Glass Walls series with Katie would fit well. Apparently they thought so too since they chose it as the winning image!
They wrote a feature about the image which was lovely and full of comments which make me want to blush, but I’m going to share it here anyway.
And as if that weren’t enough nice things they said, there’s also a short video where the judge talks about why he chose the winning images (and he has a lovely accent as well!)
I’ll just say that the title came first, then the image, not the other way around, but it’s easy to see how you could mistake it!
So no… this is not especially Christmasy, but I have not had a moment to put this together until just now! And while I have thanked the magazines themselves, I think it’s important to promote it online as much as possible. It’s just good photography manners.
With that all said, I hope all of you who are celebrating Christmas have an absolutely WONDERFUL one tomorrow! Make sure you get to sleep early so Santa has time to leave you something nice. And of course, the most important thing of all about Christmas… I hope it is filled with people and animals you love, that you’re able to express your love to them all and they say so to you as well.
Presents are lovely. Feasts of good food are something we should be very thankful for. But the heart of the holiday is sharing love with one another. I hope you give and receive lots of it 🙂
As we approach Black Friday, Small Business Saturday and Cyber Monday, I have another post about my wares, this time with a big, fat, site-wide discount!
Enter code MYTHIC2014 to get a whopping 20% off any and all items from my Etsy shop! This is a huge sale, the biggest I’ve ever created, so take advantage of it while it’s active! It will be good until January 31st 2015; perfect for buying holiday gifts for yourself and others, as well as spending any Christmas money you might get 🙂
Let me tell you a little bit about my prints. They are made at an extremely high-quality printer in downtown Los Angeles. My printer is not at all easy to get to; there is always traffic and I manage to get lost and the entire experience of getting there is terrible, but I wouldn’t change printers for the world. Even if I moved out of state, I’d keep using them and have them ship me my prints. The incredible quality of the prints they deliver is just that high.
Each and every image is carefully calibrated to reveal even the tiniest details. They somehow manage to keep the highlights high and the lowlights low without a single pixel’s worth of detail loss. The colors are an exact match for how I intend the images to look. These are NOT easy things! I have been through many printers before I found POV Evolving. And a special shout-out and thank you to Lauren, who always handles my orders! She is a delightful person and makes sure each and every image created is perfect.
In addition to all that, they only use archival inks and paper, making prints that are museum-quality and which will last for a lifetime! The paper they use is this thick, luscious paper, almost like watercolor paper; nothing cheap or flimsy. Every single time I have an image printed, I’m impressed with how amazing it looks, even though I’ve been seeing how great they look for several years!
In addition to the incredible quality of every print, all my images come in limited edition runs. There are a few exceptions, but generally it looks like this:
Each and every print will come signed and numbered along the white border. If you’d like a short, special message included, I’m happy to add that for you, free of charge!
One more word about my prints; the quality of them was high enough that Peter S. Beagle himself took them along legs of his The Last Unicorn screening tour.
Five of my prints along the left side of this photo (photo not taken by me)
This was extra special because not only was Peter S. Beagle, one of the biggest sources of inspiration to me and one of my two favorite authors (the other being Robin McKinley) had this adorable moment with Game Of Thrones author George RR Martin right in front of my prints:
Peter S. Beagle and George RR Martin with plushies, in front of my prints!
I’d like to say quickly that the above photo went a bit viral and I have been credited as the photographer, but I did not take this photo. I wasn’t even in the same state as they were at the time! I tweeted about the photo since it’s adorable and also in front of my prints, and then it really took off, but I did not snap the image, and though I have tried to correct news sources, they continue listing me as the photographer. So, I’m sorry to whoever did take this photo; I have tried to set the record straight!
If there is a certain image you’d like a print of, or you see an image you like but want it in a different size, just let me know! Some of my images are under contract and I am unable to sell prints of them for that reason, but the majority of the time, I will be able to accommodate you very easily!
Remember, the discount code is only good until January 31st 2015, so get ready, get set… go!! Happy shopping!
Katie Jonson being silly and posing with a framed print she modeled in
As we approach the Holiday Season, I’m dedicating the next few days to promoting my artwork-related items, which would make wonderful gifts for anyone! Whether you’re looking for straight artwork you can hang on the walls, some inexpensive stocking-stuffer/Secret Santa gifts, or something with a more practical application, I’ve got you covered 🙂
Today I’m focusing on items which can be found in my Red Bubble shop! I talked about this some in my last post, but I can go into it a little more in its own post. What do I sell in my Red Bubble shop? A LOT. All of the following can be found with my artwork on it!
I started buying Red Bubble calendars before I ever started selling any of my own and I’ve been constantly impressed with the incredibly high quality year after year! The paper is thick and lush, the inks print vividly and the design maximizes the room for artwork! I truly love having one of these in my house each year (and I get frequent requests for these as gifts for friends and family). It’s such a simple way to get 12 unique pieces of art to hang on your wall, adding beauty and magic every single day and it comes at a great price!
I have never had any issues with any of the items I’ve ordered from them myself, nor have I heard anything negative from others. Red Bubble really makes buying fun and easy! You can visit one site and take care of many people on your to-buy-for list and get your shopping done quickly! And if you’re looking for any image in particular on any item in particular, just let me know! I can very likely accommodate any requests!
As always, I sincerely thank anyone who helps support independent artists with their buying power! You guys help make what I do possible 🙂 Keep an eye on the blog for the next couple days as we approach Black Friday and Cyber Saturday/Monday! New items will be showcased and some really fantastic savings will be revealed as well!
Lady Death is another DreamWorld character I’ve had in my head for a long time before I had the chance to photograph her. Sometimes that can be frustrating to postpone your idea for so long, but in this case, I’d imagined the image for so long and in such detail that it made for an extremely easy shoot! I knew exactly where everything should go, how to light it, the pose I wanted; it was all in my head and I just had to get it shot.
Let me tell you a little bit about the inspiration of her character. Lady Death is, as her name suggests, the incarnation of death within DreamWorld, but I didn’t want her to be the common, dark, grim-reaper version of death we see portrayed frequently. The concept of how she would appear came from a mix of Deerskin, by Robin McKinley, Come Lady Death, by Peter S. Beagle and a dash of my own attitudes and ideas about death.
I’m going to quote from Robin McKinley’s Deerskin and not give you the context which this passage is happening in, for one because if you get me started talking about Deerskin, it will take up more than this entire post, and also because it’s not incredibly important for my point and I want you to be intrigued to read it for yourself. I will simply say that this all happens in the first quarter of the book, so it is not the end it sounds like.
“Lissar went on breathing as she looked, because she did not know how to stop; but as time passed she felt the cold upon her [naked] body, feeling it like a soft inquisitive touch, like the feet of tiny animals. She did not recognize pain as present experience, for such distinction was too subtle for her now; rather it was that was what there was left of her, as screaming had been her existence some time before. The creeping cold was a change, or further refinement, upon her existence. But the cold was not content to pat at her skin and then grasp her feet, her hands, her belly and thighs and face. It wormed its way inside her; but [she could not resit it]. Nor, she found, did she now want to, for the cold brought oblivion, the cessation of pain.
And then she saw its face, and it was not an animal at all, but Death, and then she welcomed it. Almost she made her split lips work to give it greeting; but her voice had fled away some time before.
I am dying, she thought, in the guttering of consciousness, I am dying, she thought, in the encroaching stillness. I am dying, and I am glad, for Ash is already dead, and it will all be over soon.”
I will quickly say that while there are some very, very dark moments in Deerskin, it has been one of my two favorite books for well over a decade. Where there is darkness, the light shines more brightly, as in the case with this book.
Inspiration part 2 came, as I stated, from a short story Peter S. Beagle wrote called Come Lady Death. In it, the grand Lady Neville, famous for her grand, opulent balls, has grown bored with her own parties. In looking for a way to up the excitement factor, she decides to invite Death to her next party. An invitation is sent out… and a positive reply comes quickly. The guests nervously await Death, wondering what he’ll look like and are surprised when “a lovely young girl in a white dress stepped gracefully into the ballroom doorway and stood there smiling.
She could not have been more than nineteen. Her hair was yellow, and she wore it long. It fell thickly upon her bare shoulders that gleamed warmly through it, two limestone islands rising out of a dark golden sea… She smiled, and Lady Neville tried to smile back, but her mouth seemed stiff. ‘Welcome,’ she said. ‘Welcome, my lady Death.’
A sigh rustled among the lords and ladies as the girl took the old woman’s hand and curtsied to her, sinking and rising in one motion, like a wave. ‘You are Lady Neville,’ she said. ‘Thank you so much for inviting me.’ Her accent was as faint and almost familiar as her perfume.”
While the two stories don’t seem to have a lot in common on the surface, and especially not in the small fragments you’ve seen here, there were a couple main points I took away from them both. Death was a being or person who was a) not frightening in appearance b) not male, as expected, and c) more warm and welcoming than anything else. This fits in nicely with my own views on death and the afterlife. Everyone has their own thoughts and views on the subject, which is fine, but I don’t view either as a scary thing, nor the end. Of course, we grieve when death separates us from those we love, but I know that I will be reunited with them some day. I suspect that the first batch of “people” I’ll see when I pass the threshold to heaven will be a menagerie of furry, feathered, barking, purring, squeaking, singing creatures I have loved 😉
Drawing from all these sources, Lady Death emerged in my head. She should be warm, inviting, welcoming, maternal. She should not be frightening, but soothing. She should be connected with nature, because death is a natural part of life. Her clothing would be dark, but there would be no black allowed anywhere in her costume. And most importantly, when you look into her eyes, you need to know that all is well, all was well, and all would forever be well. I knew I needed to bring my dear friend and mostly-retired model Aly Darling into this image to embody all these qualities.
What should Lady Death’s clothing look like? The story Come, Lady Death is set in a slightly unspecific time; several hundred years ago at least. People throw balls, wear gorgeous gowns, ride in carriages… it brings to mind the 17th-18th century for me, though I have not confirmed this with Peter Beagle to see if that was his intention. I didn’t want to make her clothing especially period-specific, but it definitely needed to have an old-fashioned feel to it. How silly would it look if Lady Death was wearing the latest looks from this season’s runways? I settled on a semi-Victorian feel, which felt both old-fashioned and classic at the same time.
Since I wanted to stay far away from the typical associations with the standard Death figure, black was not allowed anywhere in her costume. I chose a beautiful purple dress with bell sleeves (purchased on Ebay for a few dollars) and went to work creating a cape for her out of some gorgeous teal satin I found.
I based the construction of the cape off of an actual Victorian cape I own (also purchased through Ebay, but as a wrap at my wedding, not for a costume).
Victorian cape draped over a laundry basket so I could assess its shape and drape. Note the multiple layers of ruffles around the collar.
I reverse engineered a pattern from the cape and cut the pieces out of the teal satin. I gave my cape several ruffled layers of fabric around the collar also, which were then copiously covered in flowers, each one hand-glued in place. I spent months slowly gathering the appropriately colored flowers in the amount I needed. Many of these were repurposed from previous DreamWorld costumes, like Perennial Parasol, Efflorescence and In The Lilac Wood, but this will be their final spot. I love the costume too much to take it apart! But I have to say, Icertainly got my money’s worth from the flowers!
Lady Death cape from start to finish, complete with flower-festooned collars
Next came construction of Lady Death’s bonnet. I didn’t want her to have the standard hooded cloak, but I liked the idea of having her face framed in the way a cloak hood would. Given the Victorian-ish look I was going for, I built a bonnet somewhere in between a Regency bonnet and a Victorian one. When it’s your world, you get to pick and choose clothing details you like and use them however you want!
The base of the bonnet was some sheets of cardstock glued together into the general shape I wanted. I tried it on a few times and refined the shape. Next, I used spray adhesive to glue the teal satin to one side of the bonnet. This ended up leaving unexpected streaks of glue when dried (see the photo in the lower left corner below) so I quickly decided that side was the inside of the bonnet. I used a regular glue gun to edge the satin to the other side of the cardstock and the hem on the underside. I happened to have a small amount of very sparkly purple mesh which I added to the inside of the bonnet. This had the dual benefit of covering the glue streaks and adding some dimension and light within the darkness of the bonnet’s underside.
Bonnet construction
Next came the fun and slightly tedious task of decking out the bonnet! Multiple layers of ribbons, trims and flowers were added to it. And because someone already asked this, yes, I did glue those teeny tiny individual little flowers to the top and underside of the brim one by one. I was not excited to do that, but it was well worth it. You can see Maynard wanting to help in the last couple photos. A beautiful, wide, dark blue satin ribbon finished the bonnet off and looked beautiful tied under Aly’s chin!
Bonnet decorating – Maynard offering to help
I seem to have not taken any images of the staff construction, sorry about that. I must have been rushed. I’ll tell you about it though, it was pretty easy. With the abundance of sticks of all sizes within my yard, I found a good staff-sized one. I spray painted it a dark brown and kissed it gently with some metallic bronze spray paint. I already had a string of small, battery-operated LEDs which I’d stuck through the middle of some small flowers. The LEDs and flowers were taped rather roughly to the staff with masking tape, which I knew I could edit out later. I knew it would add work in post, but it seemed the best solution at the time.
The bird skeleton is an actual bird skeleton and was incredibly delicate to work with. I tried to be reverent and ask the bird’s spirit for permission to use it before I did, and so far the house doesn’t seem to be haunted by any bird ghosts, so I’m hoping that means the bird was ok with my use of it. It was attached using a mixture of masking tape and fine wire. I made a small wreath for it with the same tiny purple flowers I’d edged the bonnet with to take away a little of the creepy factor of a bird skeleton while also tying it in more directly with the overall costume.
Bird skeleton
Since Aly and I both have health problems and don’t live especially near each other, it took a while for us to find a time when we could actually shoot this image. Eventually though, the stars aligned and everything went perfectly! I absolutely loved the images straight out of camera and knew they wouldn’t need much editing. However, I forgot to take detail shots of the costume while it was on Aly… so Calantha came to the rescue! She actually enjoys it when I dress her up since she knows it means copious praise and treats.
Calantha modeling Lady Death’s cape
You can see how little she cares about the cape, she didn’t even move after I draped in on her. She didn’t like the bonnet when it flopped over her face and couldn’t see, but as long as I kept it adjusted, she was really pretty cool about it.
Such a pretty girl! She looks right at home in it.
Calantha models the bonnet, showing off the details you can’t see so well in the finished image
After all that, let’s check out the final image! Scroll down for detail shots 🙂
That closeup of Lady Death’s face makes the whole image for me. The gentleness, the kindness, the love shining out of her face shows exactly who the character is. Thank you very much to Aly for portraying her so perfectly, and to Calantha for modeling the costume after the shoot 🙂
Thanks to you for reading! What do you guys think about the afterlife? Would you find it comforting to find Lady Death escorting you to the rest of eternity?
***Want to win a free print of my latest image, The Blue Ribbon? Read on to find out how you can enter!!***
As ME Awareness Week continues, I feel it’s time to share my personal history with this disease. Catch up on the story with the first and second posts!
Most of you will have heard my own story about ME. To briefly recap for anyone new to the blog, on May 27th 2008, I came down with what I thought was food poisoning. It wasn’t fun, but I thought it would surely pass quickly. It did not. Everything got worse. Looking bad, I can see signs of ME showing up as early as my teens, but it was May 27th when it really exploded.
I have not been the same since; I have not had a pain-free day in all that time. I had three brief, beautiful days at the beginning of 2011. I was on steroids for an infected cat bite and for those three days, I wasn’t constantly dragged down by the muddy, boggy, wet-wool, bone-deep exhaustion of ME, which I commemorated with a self portrait. Outside of that, there has been no relief.
3 Good Days – a self portrait
Though there is much controversy over the subject, and I make no claims to be any kind of expert (except about my own experiences) I believe that ME, CFS and fibro are really all the same thing. Or, at the very least, they’re all branches of a “mother disease” which we have yet to identify. Either way, they all seem intrinsically connected. However, the United State’s intentionally wishy-washy definitions of CFS and fibro have led me to setting their names aside and using ME as much as possible.
ME has excellent, testable, finite guideline, though getting your doctor to agree to those tests is another matter. ME has the most scientifically sound definition, and it’s the one I connect with most of all, since it is so specific. However, since almost no one in the United States has heard of ME, including all of my doctors, I tend to use the names interchangeably depending on whom I’m talking to, to make it easiest for them to understand.
The hallmarks of ME include unreasonable fatigue that is disproportionate to how much you’ve exerted yourself. For instance, I might go to the grocery store and come home feeling like a healthy person would after running a marathon. You experience post-exertional malaise, typically worst 24 to 48 hours after said exertion. Muscle pain is key. Headaches and migraines common. Neurological symptoms begin, often in the form of tripping, falling, sudden “brain fog” where it seems like your brain has turned into oatmeal, the inability to remember words, or even your own name. Light, sound, scent, noise and touch are all heavily amplified; it’s like the volume in our brains in constantly set to 11. Every now and then this proves useful, like when I could smell the very faint gas leak at my neighbor’s house that no one else could. Usually it just means there are more things to avoid which would trigger pain and migraines. My husband Geoff and I joke that I can smell things only dogs and I can detect, but there’s a truth behind the laughter.
The Fog Rolls In – a self portrait about “brain fog”
And, ah yes, pain. Pain blends into your existence like spilled ink, no matter how you try to resist. The areas of pain vary from patient to patient, and even from day to day for each patient. I have a mystery flank pain with no identifiable cause for which I receive nerve-blocking injections a few times a year, including the latest round just this morning. The recovery period from them is usually brutal, but it’s better than not being able to have it done. If I clean the toilet too vigorously, my arm and shoulder might ache for a month. Sometimes longer. I am also extremely susceptible to every bug that comes around; I cannot get through a cold and flu season unscathed.
There is currently no cure for ME, nor many good ways to even manage the symptoms. Nor is there a clear idea of what the cause is. There are good arguments to be made for it having a neurological cause, or it could be an auto-immune disease, something viral, something bacterial, something sent by the gods to people who were very naughty as children in previous lives… it’s all up for debate.
Unjust – model: Aly Darling
Back to my image, The Blue Ribbon. It’s the latest in my photographic series called Enchanted Sleep, which visually portrays what living with ME is like.
Most illnesses and many causes have their own color ribbons these days; pink for breast cancer, fibro is purple, red for AIDS, etc. (And yes, certain colors are shared by numerous diseases and causes; purple is also used for lupus and Alzheimer’s along with quite a few others.) ME’s ribbon is blue. I photographed this image several months ago during an underwater shoot with Katie. It took me longer to get to editing it than I had planned, and by the time it was done, it was so close to May 12th, I decided to just wait to release it now.
Katie is my honorary ME-er; she’s quite the opposite of someone with ME, being full of energy and vitality all the time. But she’s been around me and other friends who do have similar illnesses that she seems to understand our struggle as much as anyone could. I have great trust in her modeling instincts, so when we shot this, I gave her a long strip of blue ribbon and just told her to do something with it. What she came up with so clearly encapsulated the physical fight you’re forced to be in every day, I knew it was the perfect visual metaphor. Thank you, Katie, for taking on our cause and helping me portray it in my images!!
Also, in honor of this day of raising awareness, I’m holding a contest to win a beautiful, 10″ x 15″, museum-quality print of my latest image, The Blue Ribbon; an underwater representation of the struggle that living with ME can be. Your print will come on beautiful, shimmering, pearlized, archival paper. And all you have to do is tweet!
The Blue Ribbon, model: Katie Johnson – enter the giveaway to win a print of this image!
Tweeting multiple statements will count as extra entries, so enter as many times as you like. However, tweeting the same statement multiple times will not count. And that will probably just annoy the people reading your feed, so don’t do it. 😉 I will choose a random winner from all entries on May 20th and announce the winner here!
Thank you to everyone for reading and participating! If you have had your own experiences with ME, CFS, fibro or any other chronic illness and you’d like to share your story, please leave it in a comment!
Mythic Pictures 