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.
* * * * *
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.
First, let me quickly update those of you who are regular readers. You may remember my Preparing For Battle post where I talked about… well, preparing for the big battle I was about to face. I was sick with stress and worry about it; it was honestly one of THE hardest things I have ever had to do.
But guess what? I WON!!! I’m afraid I still can’t give many details about the nature of the fight, but this is a huge, wonderful victory for me and will help make my life a little bit easier. So thank you VERY much to each and every one of you who said a prayer for me, lit a candle, sent Reiki or good thoughts… they all melded together and produced one hell of a win for me!
Now, with that’s said, let me tell you about my calendars!
Sarah Allegra 2016 Calendar
These guys are always a favorite; they’re probably my single best-selling item. And with good reason! Red Bubble packs a ton of quality into these babies with thick paper, almost like a heavy cardstock or watercolor paper. The pages have a subtle sheen without being shiny. The daily squares are big enough to make notes in. I still have calendars (both my own and from other artists) from years ago which hold up beautifully, even after years of flipping through them to see the lovely pictures!
Sarah Allegra 2016 Calendar
This also brings something else up: getting this calendar is like buying 12 small prints of my work! Each year’s images are different, making each year a unique and collectible item. And if you want to keep the calendar after the year is over, like I do, to enjoy the images whenever you want to pull it out? That’s fine! Red Bubble does a great job at printing the images and making them look the way I want them too; this is a solid buy! You’ll get images which span across my series, from my DreamWorld, Enchanted Sleep, Eternal Storms to self portraits, which feature Katie Johnson, Dedeker Winston, Travis Weinand, Noemi Regalado as well as the beloved author of The Last Unicorn, Peter S. Beagle!
Also, while I was uploading a diptych of Travis for one month of the calendar, I noticed that it made a really awesome pattern for Red Bubble’s leggings. So get your Travis-printed leggings now! 😀
Travis Leggings
All of us independent artists and craftmakers REALLY appreciate your purchases, whether it’s for Small Business Saturday, Cyber Monday, regular holiday shopping, something for yourself, or any other reason you might have! Please keep shopping small in mind during this holiday season!
And don’t forget to check out my friend Jessi’s Etsy shop, The Hopeful Spoon, full of beautiful, hand-made earrings (and other jewelry pieces coming soon!) full of lovely semi-precious stones at very reasonable prices.
Actually, they were available to download on the first, but I’m just posting about it now. My neurologist changed my medication again which led to the longest string of migraines and general barfiness and feeling awful yet. I’m just so glad I can edit again. The lack of outlet was REALLY driving me crazy.
I have to say that it’s magical, wonderful, fulfilling, surreal and fills me with overwhelming joy and gratitude that I and my art get to be a part of Peter’s art. His work has had such a deep influence on my whole life in a way that I will never be able to properly put into words, but it is something I will cherish forever. Thank you, Connor Cochran, for making this happen!!
Also, I wanted to let you all know what my friend and fellow spoonie Jessi has been up to! While traditionally, she’s been a painter, her severe fibro symptoms are not allowing much of that right now. Thankfully, she discovered that she can make jewelry even while laying in bed! She just opened an Etsy shop filled with beautiful earrings, suitable for every day wear as well as special awareness ribbons and colors for various invisible illnesses. Do stop by her shop and pick up a pair! They’re very reasonably priced and make gorgeous gifts. The holidays are almost upon us 🙂
Before I get into this post, I wanted to again thank EVERYONE who prayed, lit candles, sent me good thoughts and energy about my battle on Wednesday. I don’t have an answer yet, and most likely won’t for a while, but it did go quite a bit better than I was expecting. I am guardedly hopeful for a successful outcome. And regardless, I went in, faced a terrifying situation and did my best. Whatever happens, I can take comfort in that. So thank you all, from the bottom of my heart; I’m sure all that good energy truly helped. For those inclined, I wouldn’t mind your continued blessings until I hear the outcome! And I’ll try and let you know what the outcome is as soon as I can.
Now, on to this post!
I’ve had some exciting news that I’ve been quiet about for a while, but I can finally spill the beans today! You guys all remember how I’ve been working with Connor Cochran from Conlan Press, publisher of Peter S. Beagle, one of my two literary heroes? It’s all coming together 🙂
LILA THE WEREWOLF AND OTHER TALES by Peter S. Beagle. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text combines 6 classic Peter S. Beagle stories with 10 new ones collected here for the first time. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Click here to be taken to Amazon!
THE LINE BETWEEN by Peter S. Beagle. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text of Peter’s 2006 story collection. Cover photo by Sarah Allegra Ashley, processing and design by Connor Cochran. Model: Katie Johnson. Click here to be taken to Amazon!
And, the most exciting part for me is that six of these shiny new e-books have my images on their covers!!
MIRROR KINGDOMS: THE BEST OF PETER S. BEAGLE by Peter S. Beagle, stories selected by Jonathan Strahan. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text reprinting 2010 Subterranean Press limited-edition hardcover collection. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Click here to be taken to Amazon!
This is so incredibly fulfilling and amazing to me! I began creating images inspired by Peter’s work long before I’d ever met him or had any personal interaction with him. I just genuinely LOVE his work and it made me want to create images based on how his writing made me feel. It’s a little surreal to now have my work on his covers, but absolutely wonderful 🙂
SMÉAGOL, DÉAGOL, AND BEAGLE: ESSAYS FROM THE HEADWATERS OF MY VOICE by Peter S. Beagle. 2015 Conlan Press ebook edition (Kindle exclusive). Brand-new nonfiction by Peter — a collection of original essays exploring the roots of his own voice as a writer, and the people and works that have been his greatest influences. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Model: Bryce Rankins. Click here to be taken to Amazon!
So please click on any of the above images to be taken to Amazon where you can see what titles are being offered and pick up your favorite ones! And if you’re new to Peter S. Beagle… well, you’re in for a BIG treat.
SLEIGHT OF HAND by Peter S. Beagle. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text of Peter’s 2011 story collection. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Click here to be taken to Amazon!
If you’re liking the idea of this but don’t own an e-reader, don’t worry. New hardcover editions of these titles will be available in the near future and the plan so far is for at least most of the covers to remain the same.
WE NEVER TALK ABOUT MY BROTHER by Peter S. Beagle. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text of Peter’s 2009 story collection. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Model: Patrick Reid. Click here to be taken to Amazon!
Many, many thanks to Connor Cochran, Charlie Petit and Peter S. Beagle for choosing to use my images and working so hard to make the covers look so beautiful. I am truly honored. Thank all you, my dear readers and friends, for your support, any purchases you may make and extra special shout-out to Katie Johnson, Bryce Rankins and Patrick Reid for their modeling in their images! We’re all on book covers!!
Let me start by saying that I’m sorry I can’t give you more actual details about what’s going on, but I’ve been advised to continue to keep them under wraps. Those of you who follow me on social media have already heard that I’m going through a difficult time right now. What I can tell you is that I am about to do something on the 14th which is absolutely terrifying to me and has incredible, life-altering implications. For me, Geoff and the fur-kids. And while I have lots of people (like all you dear, lovely folks reading this) who are loving and supporting me, it’s all going to come down to the words I speak and actions I take on the 14th. I will be alone at the critical moment; the pressure feels crushing.
I feel like Louis Zamperini in the POW camp holding his wooden beam. I feel like Aerin facing the giant dragon Mar. I feel like the unicorn standing up to the Red Bull. I feel like one of Leonidas’ 300. Frodo off to Mordor. Rosie and Pernicia. Lissar and her father. You get the idea.
One small, anxious girl going up against something far, far bigger than she is; ill-equipped for the job. The higher the pressure, the more my brain feels scattered and forgets important details. And it’s crucial that I remember everything, no notes allowed. The outcome of this will have a huge impact on my financial state, which is currently pitiful. I need this win.
To say this has been stressful would be a huge understatement. This sincerely feels like one of the single hardest, most frightening thing I have ever had to do. But there’s no getting around it, I HAVE to do it. And I will do my best.
The stress is causing giant waves of discord through my body, mind and soul; causing mayhem and destruction. For weeks now, every night, I either have stress dreams or I dream that I’m dying… the dying ones are the worst because, in my dream, it’s wonderful, beautiful, the most peaceful, joyful thing I’ve ever experienced. And then I wake up and remember real life and it feels like a glorious gift has been snatched from my hands while the weight of life crushes down upon me again.
Despite numerous antacids of all kinds, I’m having persistent heartburn, often in the middle of the night. My pain levels are all elevated. And as you can imagine, my sleep is suffering in quantity and quality.
I’m not writing about this to simply throw myself a pity party. I am asking for your support. If you pray, please pray for a quick and overwhelmingly successful outcome. If you do Reiki, please send as much as you can. If you light candles, please light one for me. Please send all the love, good thoughts and energy that you can spare, whatever your system of faith may or may not be. I will gladly take it all!
I am determined to win this battle. And while it traditionally takes a while to hear about the exact outcome from the fight, I am equally determined to get an overwhelmingly positive answer, right then and there. I am visualizing myself being victorious. As much as I am afraid, I am doing my best to catch myself when I start to go into a spiral of worry over what will happen if I fail. When I notice those thoughts, I actively change my vision of the future to one that I want. I don’t need to open myself up to attracting any negative energy!
One thing about all the metaphors I listed a few paragraphs ago; despite the odds, they all succeeded. Thinking about others who have overcome incredible trials is deeply comforting to me. If they could do it, I can do it too.
I can say one thing: this is not about a new turn in my health or anything else along those lines. My health is fairly crappy right now, as is usual, but I have not taken a turn for the worse… other than the spiked pain, non-stop migraines, constant tension in my whole body, wildly increased anxiety, panic attacks and depression as well as extreme exhaustion brought about by all of this. It’s stressful to the point where I don’t even want to edit or create many days, which is an almost unheard-of low for me. But these are clearly responses to the weeks and weeks of stress and worry. I don’t want you guys to worry that I’m hiding some terrible new diagnosis from you.
I know I will get through this. And I know that with Geoff, I will deal with the outcome, whatever it is. But more than that, I know I will win. I have to. Knowing that doesn’t take all my fear and anxiety away, but it does give me hope to cling to.
I feel incredibly fragile in every way, but I will battle and I will be victorious. Still, your prayers, well wishes and love would mean a great deal to me right now. I can use all the help I can get.
I promise that I will try and let you guys know exactly what’s happening just as soon as I can. I appreciate that you’re all being very understanding about that and respecting the fact that I simply can’t divulge much right now.
This self portrait felt especially appropriate for this post. It serves as a reminder and inspiration to me to keep fighting, to get up when I’m knocked down, and most of all, never give up. Thank you all so very, very much for all your support! I cannot thank you enough.
With that said, please wish me a miraculous victory as I go into this battle. Now, let me go find my suit of armor.
Something you’ll know about me if you follow me anywhere or have read any other blog entries is my deep, abiding love for Peter S. Beagle and all of his creations. Yes, he is best known for his beloved masterpiece The Last Unicorn (the same story that was made into an animated film and you probably saw as a child, not grasping its full, profound meaning). The Last Unicorn deserves every bit of praise it gets and more. It’s the most incredible story, full of wonder and love and great sorrow… and joy, despite, or because of, the sorrow. What many people don’t know is that Peter is an exceptionally prolific writer, having written more books and short stories than I can count (A Fine and Private Place is a very close second favorite to The Last Unicorn). And every single one is just as brilliant of a masterpiece as The Last Unicorn.
I actually don’t remember a time when I didn’t know the story of The Last Unicorn. As in the book, “there has never been a time without unicorns,” so there was never a time for me without The Last Unicorn. It came out the year before I was born and I grew up knowing it. My brother and I both loved it, and to this day can still quote nearly the entire thing by heart. We would make a game out of it, seeing how long we could volley the script back and forth. As I got a little older, I started reading the book, and each time I did, I discovered new levels, new depths, new nuances that I hadn’t been old enough to understand before. It’s a common misconception that Unicorn is a children’s story, simply because the movie made from it was animated. There’s nothing wrong with children reading or seeing the movie, but it is a story for grown-ups. You can’t fully appreciate the skillful, deft writing, the terrible tragedy, the glorious splendor, the tear-inducing sacrifice, the depth of the characters until you’ve experienced more of life yourself.
It doesn’t surprise me now that I look back and remember that the very first self portrait I ever took, far before I was a “photographer” or a “self portrait artist” was inspired by the book. The character of the unicorn, magically transformed unwillingly into a human girl for much of the book, taken from immortality into a body she feels dying all around her, resonated so deeply with me. I probably don’t have to draw you a very detailed map of how it relates to my experience of living in a shitty body possessed by ME. And yet the unicorn gains something which sets her apart from all the other unicorns in the world by her ordeal. She learns regret. She learns to love. She is made more full for all her suffering. It’s a hope I cling to for myself, sometimes harder than others, but one I return to again and again.
About two and a half years ago, Peter magically discovered some of my work which had been inspired by his writing (both The Last Unicorn and other stories) and his business manager, Connor Cochran, reached out to me. There is still much under wraps and it will all be revealed in time, but we began working together, which was more than a dream come true for me. Bless him, Peter is the antithesis of the saying “never meet your heroes.” Meeting Peter only me love him and his writing more. There truly are few more kind, generous and relentlessly creative people on earth. And he is this generous with everyone. At The Last Unicorn Screening Tour (which I HIGHLY recommend you attend!!) he will stay until EVERY SINGLE PERSON who would like to meet him, hug him, have him sign their book or take a photo with him is seen. Despite the often very long lines, he doesn’t make you feel rushed, he takes his time and lets you say whatever you need to say. In the moment you’re with him, you are the only person in the entire world and you have his full attention. This does mean the screenings often end in the wee hours of night, and I don’t know how they all do it, those hours would kill me, but it’s just who Peter is.
A little while after I had signed my contract with Conlan Press, Peter’s publishing house run by Connor, I gathered up my nerve and asked Connor if I could borrow Peter and photograph him as DreamWorld‘s King when they were in town for the next screening. To my joy, Connor gave me the go-ahead. This led to a nightmarish few weeks when I frantically created Peter’s incredibly elaborate costume made almost entirely out of paper (fully documented here) but the results were worth every tearful, over-tired night I had getting ready for it. No one could be DreamWorld‘s King better than Peter.
Beloved Of The Crown – Peter as the King, with Dedeker Winston and Katie Johnson as his maids.
Why am I telling you all this? Just to illustrate what an incredibly special and remarkable person Peter truly is, and how wonderful Connor and everyone at Conlan are. They put their all into every single screening. They are genuinely all wonderful people, and Peter is everything you would hope he would be and more. I’ve been fortunate enough to have attended two of them; the first time was the same day that I photographed Peter so I had no energy for dressing up myself for the show, but the second time I went as Amalthea, as seen below (which won the costume contest that night, probably because of my handmade Have A Taco Purse, which I can make for you too!). Seeing the movie in a theater never fails to bring tears to my eyes.]
At the screening as Amalthea (with purse) and back at home.
Which, in my rambling, round-about way, leads to the main thrust of this post. The tour had planned on traveling to multiple countries in Europe this year, and while the movie will still be shown and everyone will still have a fabulous time, Peter will be unable to attend due to a non-threatening health issue. Peter is ok, there’s nothing to worry about, but still… even non-threatening health issues suck. Peter hopes to be back on the road soon, but I thought that it might cheer him up if we all rallied and showed him some love. What do you say? For our beloved author who writes the stories which make us weep simultaneously from sorrow and joy? He has given SO MUCH to the world, let’s try and give even a fraction of it back to him!
What do I mean by that? Well, feel free to leave a comment here on the blog. I’ll send them on to Connor who can forward them to Peter. Feel free to leave kind words of encouragement on his Facebook page or send him an email at contact@conlanpress.com. I’m sure he will really appreciate everyone’s show of support!
And let’s face it; we owe him. For decades of wonder, joy and poignant insight. For holding up mirrors full of fantasy which still reflect ourselves back and help us make new discoveries. For every brilliant word typed, every tear shed and every heart which grew in size because of his writing. For showing us what heroes are for. For bringing us unicorns.
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.
Mythic Pictures 