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. 🙂
It’s time for all those end-of-the-year blog posts! I admit, I kind of like this tradition. It’s a nice way to look back on things from a larger perspective. And I have a brand new DreamWorld image featuring Travis Weinand for those who want to just scroll to the bottom 🙂
2015 was a… challenging year, to say the least. And it turns out I’m starting it with a fresh, new cold and fever. It has been the worst year I’ve had, ME-wise, so far. It didn’t help that the year began with a crunched-for-time move of houses which literally took me several months to recover from. Medication changes gave me months of terrible headaches and migraines, which also meant that this year was the least photographically productive year I’ve had yet also. Between feeling terrible physically and not having nearly as much access to my art therapy as I wanted, it was a very depressing, frustrating and emotionally trying year as well. All said, I’m happy to leave 2015 behind me and have set my intentions to have a much more fulfilling 2016.
There was some drama in the larger world of ME as well. The US officially changed its name from the very belittling “Chronic Fatigue Syndrome” to the vague and incredibly widely-defined “Systemic Exertion Intolerance Disease.” Most patients and advocates were very unhappy about this and there was a big backlash, which the powers-that-be mostly ignored, as is their usual method of dealing with us. I’m still calling it ME, which is what most of us wanted it to be changed to.
I officially started a series dealing with mental health issues; Eternal Storms. It seeks to help break down the stigma associated with these illnesses and show sufferers how they are not alone.
One of the first models I ever worked with, Dedeker Winston, who has continued modeling for me over the five years we’ve known each other, despite me forcing her to wake up early, pose laying in cold, slimy, creeks, regularly get naked in forests and once helping me discover what stinging nettles look like when I accidentally had her pose nude in a patch of them, left for an extended time abroad. She is having a wonderful, life-expanding time and I’m able to keep in touch and follow her journey online and through social media and texts. I was sad to see her leave, but glad that we’d gotten in as much shooting as we did before she left, such as the Pink Mother for DreamWorld. Speaking unselfishly though, I’m really happy she had this chance to do so much traveling and is having such an incredible time! But I won’t be sad when I have the chance to photograph her again 🙂
My dear friend Danica gave me a priceless chance to work with an incredible, stunning, cream-colored Gypsy Vanner stallion named Booger. As soon as I discovered she was horse-sitting him, I began planning a shoot with Katie Johnson and him together, utilizing him in every way I could think of. I have a LOT of his shots still on my hard drive waiting to be edited, but I did at least complete one image from that magical shoot!
I was accepted into the online art gallery A Gallery, and also participated in a group show over the summer at the Creative Arts Group.
The summer show at the Creative Arts Group Gallery in Sierra Madre. This is how I want my work to be displayed, finished works alongside actual props and costumes.
I FINALLY finished editing an image I started in 2013.
I was able to attend another screening of The Last Unicorn, which was absolutely delightful! I dressed up as Amalthea and made a taco purse (get your own here!), which I think was the secret behind me winning the nightly costume contest. I was also able to introduce my dear friends and ex-neighbors Donna and John to the movie for the first time (though I’d already made them fans of Peter’s writing) and they were appropriately impressed.
Taco purse available on Etsy 🙂
At the screening as Amalthea (with purse) and back at home.
Sadly, shortly after this screening it became clear that Peter Beagle is not nearly as well as everyone had thought. This is leading to a number of problems for him and his manager/publisher Conlan Press, which I’ll leave to them to discuss. Regardless, it is sad to see him unwell and it makes the conversation I had with him at the screening last January all the more precious.
Speaking of illness, one of my favorite photographers, Ashley Lebedev, let us all know that she has struggled with a chronic illness for a long time. It was beautiful to see people’s support and desire to help her gather funds for treatment. I wish her a much better, healthier 2016 also!
The Weight of a Whistle Already Carved, @ Ashley Lebedev
I discovered the wonder that is the film Unbroken, which is now one of my go-to stories to tell myself when I need some extra motivation to get through anything difficult.
Since 2015 was so heavy with ME, migraines, frequent colds, injuries, deep ruts of depression and stress in ways I have seldom experienced it, an incredibly huge percentage of my physical energy was devoted to simply existing and not giving up. It really underscored how precious my time and energy is and how I need to devote it to things that are worthwhile. No, not just worthwhile, but things which I cannot live life without. The things are dearest and most deeply important to me.
This has given me a lot to think about as I ponder how I’ll change my management of time and energy in 2016. I will try and devote myself to not just ideas I like, but the ideas which I think are the best. The most important. I simply don’t have time to pursue anything less. This is helping to bring my artistic goals into much sharper focus. The dross will be burned away; the leftover gold burnished until it gleams.
I’m also making an effort to set aside more time for self-care activities, like short walks with Calantha or yoga when my body allows, meditation and reading for pleasure. Few things enrich my life (both my actual and imaginary worlds) as much as reading does and I need to make sure I don’t let that slip away from me by being “too busy” for it.
But of course the most important things are the relationships I have with friends and loved ones. Those will always be tended to, nurtured and cultivated as best as I can manage! I am blessed to have many, wonderful friends in my life, online and off, who get me, support me and my art and are incredibly gracious about my health problem. That’s something I should never forget to be grateful for or take for granted.
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Now, as promised, here is my new DreamWorld image!
When I first met model and friend Travis Weinand, I was struck by how truly ethereal he looks. Not simply in pictures or when in costume, he always looks like he stepped out of a comic book, collection of mythology or possibly Middle Earth. With a quick stop-off for a dose of Viking and tattoos. Anyway, I immediately wanted him to have wings. I wasn’t sure how, but I knew he’d get them before we were done working together.
So at our next shoot, I asked him to sit in front of a dark backdrop and pose angelically. He made looking strong, gentle, loving and bad-ass all at the same time look effortless. Editing did take a while since I painted the wings myself and had to figure out exactly how I wanted these “wings made out of light” to look, but it was very worth the effort!
This character lives in DreamWorld, as you would probably guess, a centurion of sorts to DreamWorld’s Queen (whom you have not met yet, but hopefully you will soon). He leads the Queen’s army, the Glorious Guard, but he’s more than just a devoted servant. Part bodyguard, part lieutenant, part enforcer, part adviser, he is a dazzling embodiment of good.
The title of this image comes from one of my favorite poems of George Gordon Lord Byron, All For Love. In it, Byron discusses love being the greatest glory one can receive, far greater than wreaths, trophies or other symbols of glory:
O Fame! if I e’er took delight in thy praises, ‘Twas less for the sake of thy high-sounding phrases, Than to see the bright eyes of the dear one discover She thought that I was not unworthy to love her. There chiefly I sought thee, there only I found thee; Her glance was the best of the rays that surround thee; When it sparkled o’er aught that was bright in my story, I knew it was love, and I felt it was glory.
That last line kept repeating and repeating through my head as I edited… thinking about the love he has for his Queen, those he protects and his glorious vestige, so I finally gave in and just used it as the title.
Wow, it feels like FOREVER since I finished my last piece! This year has not been conducive to creating art. I’ve done my best despite the circumstances which kept popping up (moving, medications, long ME flares, devoting a ton of time to the gallery show, stress from my recent battle among other things) but it’s felt like a very dry year creatively. All I can do is my best though, and even when the ME really cramps my style, I still manage to get pieces finished… just much more slowly than I would like.
It was in this depressed feeling of “I haven’t created anything in the longest time imaginable” that today’s image was born. When my regular creative outlets are blocked to me (by, say, solid weeks of migraines as I adjust to each new medication dosage), I become despondent and depressed. Life slowly loses its flavor and color and if I’m not careful, I’ll sink into a pit of despair just like Artax in The Neverending Story. Luckily, I have Geoff and my friends and family around to cheer me on and make sure I never sink too low, but much of it is outside of anyone’s control.
As I mentally pictured how I felt, this was it. A big, ugly cloud of despair, depression, worthlessness, swirling around my head. But this time, unlike my last self portrait which explored a similar theme, I wanted to show a bit of hope at the same time. The cloud is surrounded, penetrated and pierced by beautiful, golden rays of light. They stream in through the darkness, weaving through its thick blackness. The darkness cannot survive in the light. It will be broken up and dissipate. And while I know this will probably not be my last battle with depression, I also know that each round will eventually be over… and once again, the light will have won. That is the hope I cling to when the clouds cover me.
I’d like to mention my friend and very talented photographer Robert Cornelius’s Dust to Dust series as it provided some inspiration in my planning out of the darkness cloud. Thanks, Robert! 🙂 He’s an incredible photographer and all-around cool dude, so check out his work if you’re not familiar with it!
This image belongs to my Eternal Storms series on depression, anxiety and other mental health issues. These topics are still seen as quite taboo to discuss, something I hope to help with by portraying what living with them is like openly and honestly. Silence and shame never helped a single illness get cured. We need to be able to speak openly about our experiences, without judgement or fear, if we’re ever going to healed from them.
Do you have depression? Try being a little more honest next time a trusted friend asks how you are. You don’t have to go into excruciating detail, but try to avoid the temptation to simply answer “fine,” unless you actually are. And if you have friends or family who you suspect or know suffer from any kind of mental ailment? Invite them to tell you about it, ask some questions, assuring them that talking to you is safe and you will not judge them or call them crazy. It is crucialthat you answer whatever they tell you with love. It is incredibly hard for people to open up and talk to others about these problems, so take their trust very seriously and treat it with the gentlest and greatest respect.
As we approach Thanksgiving, let’s be thankful for the help and support we have. For the people dedicated to helping us win our fight. For the people who will listen to us with only love and understanding in their hearts. The people who give us hope. The inner strength we are able to find when we think we’ve exhausted it all. Those extra beams of light when we need them the most. We need more people like this in the world. Let’s try and all be them to each other. The simple fact that there are people in the world who try to reach this goal is something I am very thankful for!
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.]
The following was originally posted on Unsinn Image’s Instant Chaos blog on Tumblr and is reprinted with his permission. I very, very, very rarely post other people’s writing on my blog; in fact, this may be a first. But it’s an important subject, and one I felt he summed up much better than I could have. Please check out the rest of his blog!
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This image was created for my social justice passion project “Nakedly Obvious.” The model is the incomparable Playboy model Stephy C.
The Supreme Court is currently hearing arguments for and against gay marriage.
One of the Court’s considerations is whether we should upset a heterosexual tradition of marriage which has persisted for thousands of years.
But, how has that tradition been perpetuated? Through religion.
Religion…which has no place in a secular debate about civil rights.
Remove the illogical, archaic, religious doctrine from the debate and there is absolutely no justification to deny adults of sound mind the right to be legally bound by their love.
Define a group in any other way, then try and make the argument they shouldn’t marry. You would sound ridiculous.
BANK TELLERS shouldn’t be allowed to marry.
FARMERS shouldn’t be allowed to marry.
LEFT-HANDED PEOPLE shouldn’t be allowed to marry.
CHRISTIANS shouldn’t be allowed to marry.
Would anyone in their right mind go all the way to the Supreme Court to defend the position that Christians shouldn’t be allowed to marry? You’d be laughed out the front door. And that is exactly what should happen to those who oppose gay marriage.
This question is, and has always been, a matter of equal protection and civil rights. And when history reflects on this era in our social evolution — as it has over past judicial missteps involving segregation and slavery — it will judge us most harshly if we fail to insure equal protection and civil rights to all of our citizens.
And rightfully so.
Two people in love committing to each other is not harmful to marriage. That is what marriage IS…or at least, what it should be. Defending the right of one person to marry and denying the same right to a similarly-situated person is unlawful discrimination. Period. And if the Justices can keep clear eyes and heads and not be blinded by religious fervor, defending the rights of EVERYONE to marry who they love will be an inevitable outcome.
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.
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
It’s been a very crazy couple of weeks since my last post! My sinus surgery is over, including an odd complication I had which caused an artery near the back of my sinuses to burst unexpectedly. This led to me losing 2-3 pints of blood and having to have an emergency surgery last Tuesday to correct it. I’m happy to say I seem to be all done bleeding and nothing else strange has happened since then! I’ll tell you more about my adventure in another post; it’s a rather long story. I’ve regained most of my strength but I’m still recovering a bit. So let me tell you about today’s self portrait for now!
This image has been in my mind for a long time, ever since I this post. I had discovered, in the course of looking through my blog’s stats, that someone had found my blog by searching “I have Chronic Fatigue Syndrome and I want to give up.” My heart still breaks for this person. I wrote a post at the time replying to them but I’ll probably never know if they saw it or what happened to them.
I’d wanted to create an image for my Enchanted Sleep series based on the idea of being beaten down by chronic illness yet getting up, but it took a while. My first attempt was unsuccessful and I had to think for quite a while about what wasn’t working and then find time to reshoot it. Eventually though, I had created the image I wanted to make.
While I had physical, chronic illness in mind when I was creating this, the image is certainly not limited to being interpreted just in that light. Mental illness, for example, is another example of something you have to rise from again and again. And it happens that I’m in a bout of depression myself right now. The reasons are long and complicated so I won’t get into them now, but every day recently, I’ve felt like this just trying to get out of bed… never mind how I might feel physically.
Chronic illness, mental illness… they are not something you can beat in a day. You’ll have good days and bad days. You may have entire days, or even weeks or months where you don’t struggle with whatever it is that knocks you down. But when it comes, you have to get back up.
Every time.
Every time.
Every time.
It can be exhausting, and you might not have anyone in your life who knows that you’re even battling like this. Those who have a strong support system in place are fortunate; it helps, a lot. But whether it’s something others know about or not, it’s a demon which must be faced and conquered every time it arises.
I hope that everyone reading this has their own support system to keep them going. Friends and family, online or off, who can cheer them on. Who can give them the push or pull they need. We all need help from each other; there’s absolutely nothing wrong with asking for or receiving help.
Asking for help can seem more daunting than fighting the beast holding you down. But do it. No matter who is reading this, you have people in your life who love you, who care about you, who want you to succeed, who will extend the hand you need to get you through this.
Whether it’s an internal struggle no one else will ever see or you have countless loving people help guide you through your troubles, we must rise every time we get knocked down.
If you need help and you don’t feel comfortable approaching anyone you know, you can always talk to The Samaritans. You can call them, email them or even text them. They have people around 24/7 to help you through whatever you’re facing and it’s completely confidential. They are well trained and caring. Give them a try if you’re in need of someone to talk to! I can personally vouch for how much they help.
It occurs to me that Cacti and Sinuses sounds like a weird band name 🙂
Here we have another True Detective-inspired image for my Pop Culture set of images. This one was inspired more directly by the song used in the show’s title sequence, Far From Any Road, by The Handsome Family. The song’s lyrics tell the story of a cactus which blooms once every thousand years. Anyone who witnesses the rare event is driven mad by it. Which, considering how much inspiration the show took from Robert W. Chambers’ The King In Yellow, a short story collection about a fictitious play which will drive any viewers or readers insane, feels perfectly fitting. It also is a brilliant pairing in mood and style for the show; the images and beautiful double exposures all work in such harmony… it’s the most beautiful pairing of music and television.
I don’t think my imagination is anywhere near being done inspired by True Detective though! It’s the show that just keeps giving and giving 🙂
I’d like to clarify that I did not actually force Katie Johnson to sit nude in the middle of a cactus pile. No models were harmed in the making of this image! I composited an image I shot of Katie from a high angle with images I shot of my neighbor Donna’s cacti and blended them together in Photoshop. Thanks to Geoff for steadying the ladder I was on shooting the cacti and helping to make sure I didn’t get stuck by any of their needles!
Changing the subject; at this point, I’ve had eight colds since the end of July, one of one which lasted for 3 weeks, two ear infections with the colds and strep throat another time, so I am having sinus surgery tomorrow. Apparently my sinuses aren’t draining like they’re supposed to, the germs are never really leaving and they keep taking over my body again and again. Despite my generally poor health with the fibro and ME, my sinuses haven’t really ever been an issue up till now, so I’m hopeful that the surgery will clear things out and this will stop being an issue. On average, I’ve only had about two to three weeks between colds for the last three and a half months and I can’t tell you how VERY TIRED I am of having colds. Lots of acute illnesses of top of chronic illness feels terribly unfair.
The last couple months have been rough health-wise, but I’m very eager to let the doctor clean me out and hopefully set me down headed the right direction! I’ve been told to expect to feel extra crappy for a while after the surgery, and I was able to get a few simpler images edited before today in case I’m feeling really terrible for a while, so there shouldn’t be any big break in images being posted. I will also have my wonderful husband Geoff to help me through my recovery; he has had this exact surgery before, which I’m sure will be very handy to help me figure out how to best deal with whatever negative effects I feel from it. He’ll be with me the whole day of my surgery and the next, and after that I should be ok to be on my own. But I’ve got my wonderful neighbors right next door in case anything comes up!
I’m chomping at the bit to get the surgery over with so I can start actually feeling better, but of course I’m also a little nervous about it. So wish me luck; your good thoughts and energy will be very welcome! I’ll try and update the blog when I’m feeling up to it.
One of the things I love about working with Katie is how her heavy dance background translates so beautifully into her modeling. She is just always so graceful and effortlessly aware of every part of her body, able to emote even through her fingers and toes. With that said, please enjoy Katie’s beautiful work in this latest image of her!
She was one of the first models I worked with and we clicked so well that we’ve been working together ever since. She is one of my go-to models, one of the best and most reliable I have.
She instinctively understands what I’m wanting from a shoot and she delivers every time. Of course, I adore my other models too, I have the best group of ladies and gents willing to pose for me, but this post is specifically about Dedeker.
Because, you see, Dedeker was chosen to be on Fox’s new reality show Utopia, which airs tonight. Their sites describes the show’s premise well, so I’ll let them explain it:
“Behold UTOPIA, a bold new series based on the hit Dutch program. Watch what happens as 14 pioneering Americans wave goodbye to the lives they’ve known, move to a remote location, and set out to create a society from scratch. They’ve got limited supplies, wildly diverse backgrounds, and zero bathrooms.
What could go wrong — besides everything?
The Utopians will make every decision about how they live and work. Will they choose democracy or dictatorship? Capitalism or socialism? Fidelity or free love? Which religion, if any, will prevail? Will they punish or forgive? Keep or share?
Are those chickens friends….or food? If not now, when?
It is all up to them.
This is not a game. There is no prize. This is UTOPIA: reality TV in its truest form.”
One of the unique qualities about the show is how long-running it’s intended to be; the contestants have to be willing to stay there for up to a year; perhaps even longer. While no one is guaranteed to stay that long, it’s a possibility. And I’ll admit, I was very sad to think about not having one of my favorite girls around to shoot spontaneously as the desire came up.
But I’m more interested in supporting Dedeker. This sounds like a really unique opportunity for her and she’ll definitely come out with the story of a lifetime to tell!
So in the spirit of supporting her and promoting her being on the show, I decided to put together a post with some of my favorite Dedeker images from the last four years of partnership!
All of the Utopia contestants have their own catch phrase/tagline for lack of a better term. Dedeker has been billed as the professionally-belly-dancing, polyamorous, nude model who has no fears of being naked – a trait I can personally attest to. I have many images of her, both clothed and unclothed, but for the purpose of this post, I’m going to celebrate more of her nude work.
She is equally skilled at both kinds of modeling, even when it involves wearing hand-made, noxious-smelling, tea-dyed dresses, heavy crowns of branches which have to be strapped to her body to support them, with decorative ribbons biting into her flesh because her photographer was too busy focusing on other details and she was too much of a pro to complain.
The Court Of The Dryad Queen
Dedeker has been instrumental in the building of my most-beloved photography series, DreamWorld (my own Utopia, if you will). She has portrayed countless characters, including dryads, oracles and deer-people to name a few.
Mythic Pictures 