Sometimes I get a little daunted when May 12th rolls around each year, wondering what new I can say about the subject. If you didn’t know, May 12th is Invisible Illness Day; a day to bring attention and awareness to illnesses and diseases which don’t manifest obvious outward symptoms for the world to see. If someone has the measles or is in a wheelchair, you can hopefully tell that just by looking at them. Diseases like fibromyalgia*, Chronic Fatigue Syndrome*, Crohn’s Disease, multiple sclerosis, mental health problems, Complex Regional Pain Syndrome7, Celiac Disease, lupus, rheumatoid arthritis, Lyme disease and the one I have, myalgic encephalomyelitis* (ME for short) are considered invisible illnesses. This is by no means a comprehensive list, just a few examples.
According to Wikipedia and the 2002 US Census Bureau, 96% of chronic illnesses are invisible. This adds in an enormous extra challenge in obtaining proper medical care and treatment as well as being misunderstood by the population in general. If people don’t know that there are quiet, private, hellish wars being fought every day by millions of people all over the world, how can we ever expect our treatment to improve, let alone find cures?
That’s why May 12th is so important. We, the sick, need people to understand, to care, to help us advocate when our treacherous bodies won’t allow us to. Awareness is the critical first step in any change happening.
Why is it so important that we treat ME? What makes our disease so special?
It can be fatal. People die from this. If not from the disease ravaging our bodies for years and decades, then it often comes by our own hands as we can no longer endure the daily torment.
No one should have to live like this. As someone who has what’s considered only a “moderate” case of ME, I can tell you it’s a living hell. Pain is nearly constant, sometimes to the point where I’m in tears and desperately wishing to die. It takes away the plans you had for a normal, fulfilling life. Careers, hobbies and passions are taken from you. You either simply cannot expend the energy on anything non-essential, you lack the basic funds to sustain most pursuits because most of us can’t work, or your brain is compromised by what we call “brain fog” and you’re unable to focus on and accomplish anything. (More on brain fog later.)
We deserve to live happy, fulfilling lives, just like everyone else. When you’re constantly in pain, always exhausted and unable to think clearly, this doesn’t leave much room for whatever kind of life you wanted for yourself. And when I say exhausted, I don’t mean that we’re tired because we didn’t sleep well the night before. On a good day for me, it’s like how other people when they have the flu. A constant, crushing weight that makes the slightest exertion a Herculean effort. On bad days all I can do is lay in bed and drag myself to the bathroom periodically. Sometimes even feeding myself is a challenge. I might have to choose between feeding my animals or myself, because I don’t have the energy for both. And of course the animals always win; they’re my responsibility.
I am mostly house-bound and I require help with the sort of tasks I used to take for granted. Forgot something at the store? No problem, just go back tomorrow! Nope, not with ME. Any time I take a trip outside my home, I have to plan at least one full day of recovering at home from it. If it’s something late at night, very noisy and extra stimulating, plan on 2-3 days at least. (But frankly, late night, noisy, stimulating activities happen EXTREMELY rarely because of the damage they cause later.) When I do gather my strength to photograph models, that is my exertion for the entire week at least.
ME is extremely isolating. You can’t just go hang out with friends. You can rarely make it to family functions. Last year, I had to miss a surprise party thrown for my own mother, something which still upsets me today. I was just too exhausted to go, and I knew that if I REALLY pushed myself and forced myself to go, I would pay for it for a very long time.
ME is vengeful god. If you violate any of its insane decrees, you WILL be punished. Probably for a long time; sometimes forever. There have been cases where someone with ME did just a little too much one day, they spent the next day in bed… and then they were never able to leave it. At the same time though, if you try and do as little as possible, your energy supply will shrink and you’ll be worse off too. Damned if you do, damned if you don’t.
Right now ME received approximately 5 million dollars a year in funding from the US government. To put that in perspective, that’s about the same amount given to researching hayfever. Male pattern baldness gets at least four times as much. HIV/AIDS, which is comparable in both frequency in the population and severity of illness, gets about 600 times that amount. I’m not saying that HIV/AIDS patients shouldn’t receive that much; I think they should! What I’m saying is that ME needs to be recognized at all levels of society and government as the deadly, hellish disease that it is and get proper funding as well.
This year I decided to do something that was a big stretch for me physically. I planned a set of self portraits (all shot at the same time) with a rather complicated makeup look for my Enchanted Sleep series on living with ME. Doing that much makeup on myself normally would have been enough exertion for one day for me, but that plus shooting the images, even with Geoff’s generous help, put me in bed for days afterward with migraines pounding my head. But I’m not sorry. It was worth it.
Oh yes, brain fog. (Which I’ve got a bit of as I’m writing this.) It’s like when you have a fever and can’t concentrate or think clearly. Sometimes it reaches new heights where people suddenly can’t spell, remember their names or understand their native language. Most days it’s more like mentally wading through a bog, at least for me. I decided I wanted to portray this visually in the images I created since it’s such an annoyance at best and terrifying at its worst. I think it will be obvious how I incorporated that element into the images.
I have the video I took of me applying the makeup as well as the finished photos to show you, but I want to issue a challenge as well! I want you: you, who are reading this right now, to #GoBlue4ME! Why blue? Because that’s our disease’s awareness ribbon color. What does “going blue” mean? There are any number of things you could do to go blue. I created a couple images that you could use as your profile photos for May 12th, or even this whole week (or more!). You are more than welcome to download them and use them however you’d like! You could dress all in blue and post a photo of yourself with the #GoBlue4ME hashtag on any of your social media accounts. You could get a bunch of blue balloons, take a photo of them and use the hashtag on them too; anything blue works!
For makeup artists, I’m issuing a special challenge. As you’ll see in my video applying my makeup, I used ONLY blue shades for this entire look. Foundation, concealer, eyeshadows, blush, mascara, EVERYTHING. I challenge you all to do the same and post your looks using the #GoBlue4ME hashtag! If you’re on YouTube and create makeup tutorial videos, this would be perfect for you. There are so many fun makeup challenges going around YouTube, Instagram and other social media sites; let’s make this the next big trend! You’ll not only be stretching yourself, you’ll be contributing to a wonderful cause and helping us raise awareness for the whole world!
I did allow myself to use shades of teal, green and purple in my look because they’re offshoots of blue and I really thought it would make for a better overall look, so feel free to do the same. And you don’t have to make the blue tie into your foundation color as well, but bonus points to you if you do. 🙂 Let’s have some fun, create gorgeous looks and help a community in need of a lot of support by coming together!
Ready to see the video and my images? Here you go! I’ll be releasing the images individually over the course of the week leading up to May 12th, but you can always find them all here.
And please, pass these around! Share the links, video and images with anyone and everyone! We have to make a lot of noise to get the change we so desperately need. You have my full permission to share far and wide!
And please, if you take up the #GoBlue4ME challenge, let me know! Of course, I can search the hashtag and see what you guys have been up to, but I’m very excited to see what you come up with!
One last note, your going blue does NOT need to happen on or before May 12th. Keep doing it as long as you’d like to! The longer we can keep the word spreading, the better.
Thank you to absolutely everyone who has and will participate in this! You are helping so many more people than you know. I thank you from the deepest wells of my heart.
Download these images and make them your profile photos for a day!
*[There are various theories and arguments about weather ME, CFS and fibromyalgia are all the same disease or separate. You’ll find as many different opinions as there are sufferers. It is my personal belief that they’re probably all the same thing, or at least all very closely related. Some people are extremely militant about using the “correct” name; I find it more important to help people understand by using the name they’re most familiar with. I tend to use them all interchangeably depending on the situation and who I’m talking to, but if I had my druthers, I’d simply call it ME and be done with it.]
This was one of those self portraits that I just HAD to shoot RIGHT THEN or I was going to explode. It’s actually been a pretty rough couple of months; I’m fighting my way out of another bout of depression that came on for seemingly no reason. This does happen periodically, so I tried to just give it time and let it pass, it always will eventually… but it’s been clinging like it hasn’t in a long, long time.
As depression progresses, it gets worse, not just additionally, but exponentially. You can very quickly move from, “Ok, I don’t like this, but I’ll get through it soon,” to “Oh my god, this is going to be the rest of my life, I will never feel joy again ever; what’s even the point of living??” in shockingly short time.
For me, one of the best tools I have against depression and slowly losing my will to live is creating art, especially art that expresses how I’m feeling at the time. It’s incredibly cathartic. Working on this self portrait has been a huge help in keeping me sane lately, but the pessimistic side of me wonders if I’ll just be left right where I was before I started it, once I’m totally finished creating it. I suppose that even if it does, I’ll at least still have a new image in my roster. It hasn’t helped my depression to know that it’s been so long since I released any new images (there are far too many reasons to get into right now, but it’s been incredibly difficult to find and make time for art lately).
I was thinking about what I would say to accompany this image, which (probably obviously, belongs to both my DreamWorld and Eternal Storms series) and pondering how to explain what long-term clinical depression feels like to those who haven’t experienced it. It’s not the same as just being sad or upset, it’s a stain on your soul which you can’t ever blot out. Out, out, damn spot. A stain which not only looks ugly, but spreads like a cancer and does you actual harm, emotionally, physically and mentally.
Depression, especially when it gets really bad, feels like your brain is beating and gang-raping your soul every day while the rest of the world goes about their business, either not noticing, or at best stopping to take cell phone videos of your torment, but offering no help. And much like the unjustified stigma and shame victims of abuse feel, people who have trouble with depression and who don’t feel excited about being alive are often subject to the same kinds of judgements. We must enjoy wallowing in our own emotional filth, or else we’d just get up, dust ourselves off and go be happy, right? Or, ok, maybe it’s really a chemical imbalance thing; so just take an anti-depressant and let’s all get on with our lives, all right? And she was wearing a short skirt, so she was asking for it.
I wish it worked like that; I wish it was that easy. I can’t recall how many medications I’ve tried, not to mention the far, far greater number of alternative healing treatments, supplements, and anything else I could think of. Some help more than others, but so far nothing has completely cured me.
For anyone wondering, no, I do not believe this bout of depression is really related to the ME. The ME has been about the same as it has been since my injections kicked in, so there haven’t been any recent changes on that front. It definitely doesn’t help anything, but I don’t believe it’s the cause.
Depression lays a gray film over your life. Everything appears bleak and hopeless. There’s no point to trying, no point to doing anything. And there’s also the honest, nothing-to-do-with-depression frustration of having to be your own guinea pig as you try different treatments, often with horrible, horrible side effects, which may or may not stop after you discontinue the medication. It’s been recommended that I add a psychiatrist to my team of doctors (I have a wonderful therapist, but she’s a psychologist, so she can’t prescribe medication) which I’m not looking forward to. My depressive mind doesn’t want to go through the bother of more appointments, more co-pays, more explaining my symptoms and feeling judged, more trying new medications will probably make everything worse before it even might get better. My rational mind says I should try it anyway, but I’m not looking forward to it.
So, back to talking about this image. I chose the title even knowing it might ruffle some feathers, because I honestly don’t feel like there’s a better way to explain it to those who have been fortunate enough to never be so depressed that they feel they can’t go on another day. It is your mind raping your soul, verbally abusing you, telling you you’re worthless, a horrible person, undeserving of love or bothering another person by asking them for help. It’s a prison only you can see and feel; a prison you both hate and are afraid to leave, because it’s all you’ve known for so long. (My first memories of what was clearly depression are from my early teens, but I wonder if the terrible anxiety and nightmares I endured since I was a very young child were a precursor to this. The first time I gave serious thought to killing myself, I was 17.) A strange Stockholm-like syndrome can develop where you long to escape, but are afraid to. However, I hope it’s clear that I am in no way trying to take anything away from the trauma victims of the “regular” kind of rape suffer from. Though our hells overlap in some ways, they are not identical.
I liked the idea of using “rapeseed” in the title, not only because it catches the ear, but because I feel it works on a metaphoric level. Rapeseed is a plant which grows beautiful yellow flowers; it belongs to the mustard family from what I’ve read (and apparently the name has to do with the Latin word for root vegetables and nothing to with an act of violence). Kirsty Mitchel shot part of her Wonderland series in front of a breathtaking field of rapeseed flowers. It is also, apparently, what canola oil is made from (or at least used to be? I’m finding mixed info), around which there is some controversy if it’s truly safe for human and animal consumption. The word at once touches on horrible, horrible acts of violence and abuse, potential danger but still has immense beauty to offer the world.
In this image, I imagined a beautiful, unicorn-like creature, someone that would look completely pure and innocent, someone who looked like that would never have had a single bad day. And I just poured my emotions into the shoot, letting them all out. I’ve already said it was cathartic, but I can’t stress just how much it was. I felt lighter that day than I did in a long time. Even editing it was therapeutic. Some images seem to fight you the whole way, kicking and screaming, into what you want them to be; this one felt like it was actively working with me to help me achieve my goal. It’s one of the most gratifying feelings when art flows like that.
I have been studied makeup application a lot recently (mostly for upcoming images) and this was one of my first times being able to test just a little bit of my new knowledge out. That was fun, although tiring. But I’m pretty pleased with my first attempt at being a makeup artist! I had to search high and low for some cosmetic-grade silver glitter of the right size and color to make the glitter-tears; you really wouldn’t think it would have been so difficult, but it was! I eventually found some on either eBay or Etsy; I’ve bought some from both and now I don’t remember where this particular one came from. I already had the silver wig, so I just grayed up my eyebrows to match it better. I used Nyx’s Jumbo Pencil in Milk for the entire eye/cheekbone area along with a nice matte white eyeshadow from BH Cosmetics pallet, along with two shades of lavender and a darker purple in my crease and as blush. I contoured with another Nyx product, an eyeshadow in Taupe which is perfect for my pale skin (even paler here, so I used a very light hand). I highlighted cheekbones, lids and inner corners with Deviant Cosmetics Ghost Violet, which is just about my new favorite thing ever. It has the most gorgeous flash of purple when the light hits it, and Deviant Cosmetics has four or five colors in their Ghost line; I recommend them all! (If you’ve been eyeing the Kat Von D Alchemist Palette but don’t have the money, go see Deviant Cosmetics. Their colors are brighter, more vivid, they carry one more color than comes in KVD’s pallet, and it’s WAY less expensive! And since it’s mineral makeup, there are no weird or harmful ingredients to worry about.)
After I did my makeup and looked utterly insane in person, I set my camera up and a couple lights. I actually really hate setting up lights, so I always try and make it as minimal as possible. Luckily, this shot didn’t call for anything fancy, so I got away with only two. I taped some white, mesh fabric to the inside of my front door, and it gave me a lovely, neutral whiteish backdrop that wouldn’t distract from the main subject. I was nearly done shooting when I remembered I’d intended to wear my unicorn horn circlet from Firefly Path! I quickly shot a few more images with it on, tipping my head at different angels and planning on adding it on to the final image in post, which I did. (This is not the exact circlet that I have, my horn is silver and the crystals are lavender, but this seems to be the only one in her shop at the moment.)
Unicorns represent a lot of things to me, but innocence and purity are two big ones. If a human is sad, well, that’s… sad, but normal. If a unicorn is sad, it’s tragic. That there could be anything their magic couldn’t overcome underscores the power of whatever is causing them pain. To me at least, that emphasized the magnitude of the power depression can hold over you. The working title for this image as I tinkered on it was Sad Unicorn, because that was all I could think of when I needed to save the file for the first time. It still feels appropriate in a way.
I added the trees and birds on the background, as if perhaps the unicorn girl is longing for her forest home. I specifically chose to add crows, both because they’re one of my favorite birds (did you know they actually make and use tools and are incredibly smart?) and because Native American legends say they escort one’s soul into the afterlife. That felt very fitting giving the subject of the image. She seems like she’s in an alien land, somewhere she doesn’t truly belong, which is how I’ve felt about my time on earth just about every single day since I was born. I knew this was not my true home. My true home is where my soul resided before it decided, for whatever insane reason, to incarnate into this life. In a meditation, months ago now, I actually visited what I consider to be my true home and I sobbed and sobbed, because I was so glad to be back, even for a moment, and also because I knew I couldn’t stay. That place, that timeless, unchanging Home, is where this ethereal creature belongs too.
Now that I’ve gone on for probably far too long, I’ll finally show you the image. I felt it was very important to explain my reason for the title I gave it to give people a way in to understand it. And for anyone concerned about me, thank you, but I’ll be ok. I’ve been through worse. And I didn’t even have photography back then. I have an excellent support system, which I didn’t have nearly as much of before, including my really incredible therapist. All that said, let’s get on to the first image I’m releasing this year!
Lastly, I don’t enjoy talking about my mental health (or lack thereof) to strangers on the internet, no matter what impression this post gave you. I speak candidly and openly about it because we NEED to end the stigma around it. And the only way for that to happen is for those of us who struggle with it to speak about our experiences. A lot. In detail. Repeatedly. I do think things will change eventually, but it will take a lot of voices speaking honestly, blatantly, about it. My voice is only one drop in the ocean of voices, but to quote Cloud Atlas, what is the ocean but a multitude of drops?
Here we are at May 12th again. Another Invisible Illness Day come to bring awareness to all the illnesses and diseases which are impolite enough to leave their sufferers still appearing to be well. Of course, anyone more than casually acquainted with someone who has fibromyalgia, myalgic encephalomyelitis, chronic fatigue syndrome, complex regional pain disorder, multiple sclerosis, rheumatoid arthritis, Crohn’s disease, Lyme, lupus and many, many more illnesses can attest to how debilitating they can be. The facade of health they leave intact feels like salt in the wound; a confusion for those untouched by their cruel hand, a silent undermining force with us at every doctor’s appointment, a declaration that we are lying or greatly exaggerating our illness.
What else can I say about ME? About all the other forgotten, ignored diseases swept under the rug of modern medicine? Illnesses which embarrass our doctors with their constant reminder that we remain unhealed. Sicknesses with confusing, confounding symptoms which can morph and change like the whim of a butterfly’s flight. Maddening maladies which suck away our vitality, our joys, our passions, our lives as completely as any vampire.
I’ve written about ME extensively as it’s been an enormous part of my life for the last eight years. How I have not had a single day since late May of 2008 that was free of pain or its constant, overwhelming exhaustion. How it has progressively gotten worse each year. How the government would like to pretend we invisibly ill don’t exist. How grotesquely underfunded our research is, giving us the same amount of money for research as hayfever gets and less than 1/4 of what male pattern baldness receives. You have heard me spout the facts and statistics. You’ve heard me talk about my personal story and fight with ME. What else can I say?
I can say this: I am not beaten. I have not given up.
I am determined to get better. I am committing myself to be well, even if I have it about through sheer mental will. I will not give in to ME’s gloomy, hopeless future forecast of progressively worsening every year. I am not accepting a future of the living death that is ME.
I don’t know exactly how I will get better, but I am going to. As a sign of my determination, I changed my blog’s tagline for the first time since I started this blog years ago. “Art, photography, life and why I always feel like shit,” felt perfectly appropriate at the time. “Art, photography, life and how those are really all the same thing,” is much more appropriate now. My identity is not Sarah-who-has-ME. I am just Sarah.
As I wrote about in my last entry, my life has been pleasantly consumed recently by my spirituality. I have strongly felt how focusing on fighting ME has been feeding it. So now, I will ignore it as much as possible. I do not mean that I will forget my body’s current limits, or not honor them. Listening to my body and what it’s able to do is vital for my current and future wellbeing. But I’ve realized that I can live within the confines of my case of ME while still not letting it reign in every area of my life, and that feel incredibly freeing. This is the path I will pursue.
This also does not mean that I will not advocate for ME sufferers. I still feel very strongly that the only way we will bring about change is by demanding it. And we can only demand it if we know that it exists in the first place. But I can also advocate without allowing ME to rule every part of my soul.
As May 12th approached, I wanted to create a new image for my Enchanted Sleep series, which is all about living with ME. I asked Katie Johnson, frequent model and collaborator as well as dear friend, if she would help me bring some concepts to life and she gladly agreed to help. Through a variety of factors, I wasn’t able to shoot these images until very recently, which meant I had a very short window to edit one up and release it for Invisible Illness Day, but I got it done! Ideally, I would be releasing the whole short series we shot, but I am content with having just one to show you and help illustrate life with ME. With that, please let me present my latest image to you, Living With The Tombstones.
I probably don’t have to explain the symbolism behind shooting this image in a graveyard. ME (and many other invisible illnesses) truly can be a living, nightmarish death. Even if you’re not one of the unfortunate souls cursed with severe ME, where any touch, light or sound cannot be tolerated, you die every day to the dreams and hopes you had when you were healthy. You might discover new passions to pursue within ME’s confines, but do you ever truly forget what’s been taken from you? If you do, I am not there yet.
I took the name “invisible illness” and interpreted it quite literally, editing out any part of Katie’s body which showed outside her long, princess-like dress. And the mirrored mask felt like the perfect touch. When people look at us, they rarely see us; they see their projections of who we are. Often what they see says far more about them than us. Some will look at me and, because I can occasionally manage to put on clothes, have Geoff drive and go with him to the grocery store, refuse to believe there could be anything physically wrong with me. They don’t see the toll that those short, simple trips take on me. They don’t know that grocery shopping is my ENTIRE plan for that day, probably several days. How the lights and noise and bustle inside the stores give me migraines, panic attacks and leave me in bed for the rest of the weekend. They don’t see the weight of my illness on Geoff and my family. How if I see friends, they always have to come to me. I so often feel like a dead-weight wife, daughter and friend. The times I’m overwhelmed by the ME and can’t decide between crying and being too tired to cry. How many pills I take every day to try and make it to the next day and not be consumed by the constant pain I’m in. They just see a fairly normal-looking girl.
I can’t blame other people for not knowing that I’m sick. I don’t display the characteristic signals of someone who is unwell, so of course people assume I’m healthy. But we need to get to a place where I could tell a stranger that I have ME and they might know what I’m talking about. That if someone else said they have MS or Crohn’s or fibro, that stranger would have heard of those illnesses. That the stranger would have at least a basic idea of our struggle and the dire need for change, for research, for treatments, cures and basic respect.
We can get there. We will. One May 12th at a time.
Join in the #MillionsMissing protests in Washington DC and other locations through the world on May 25. You can participate even if you’re too unwell to join in person or if there isn’t a protest near you!
Start a discussion, link to articles, blogs, videos and/or artwork that discusses ME or other invisible illnesses that will help spread awareness. Add a #may12th hashtag to your posts!
Watch and share the video below which I made last year:
I’d like to thank everyone in my life, online and off, who has supported me during these trying past eight years. Especially Geoff, who I’d only been dating for a month when I became ill. Lesser men would have run from what he had to face, but he’s stuck with me, no matter how bad things get. And I’d also like to thank everyone for the extremely warm and receptive response you all had to my previous blog post. Your kind words and love and support are greatly appreciated, now and always! ❤
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.
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 🙂
I shot this self portrait a week or two ago after enduring months of worse-than-usual depression. Some was due to outside influences, bad news, being sick and other things that any normal, healthy person would feel depressed about. But a lot of it was that irrational, heavy, demanding, life-draining depression that is clinical depression. This is not feeling sad about things that you should feel sad about. This is round-the-clock, punishing joylessness, sucking the beauty out of everything, leaving all around you colorless and meaningless. This is clinical depression.
I’ve battled this beast since it first started manifesting in my early teens. It took me some time before I learned that what I was feeling was an actual condition, a potentially solvable problem, not just a bad mood that hung around for years. I’ve also tried more remedied to it that I can recount; anti-depressants, therapy, energy work, supplements, yoga, getting more exercise (before I had ME; over-doing exercise now could do me great harm), self-help books, seminars, journaling, art therapy… on and on and on.
And it still clings.
I decided to start a series specifically addressing mental illness; clinical depression and anxiety in particular, since those are the two I fight with most. I manage them, sometimes it’s better, sometimes it’s worse. Sometimes I want to just die. I don’t know if it will ever go away completely, thus the series title Eternal Storms.
I identify with Eeyore from Winnie the Pooh, with his constant dark cloud covering just him. I’m sure that was subconsciously part of the inspiration for this piece. When I’m going through a bout of depression, this is what it feels like to me. A dark storm raging round my head, that only I see and feel. It makes the idea of asking for help feel pointless; even if I break up this cloud, another will come. And the social stigma of admitting you need help at all, let alone help with your mental health, makes it all the worse. If I’m having a week where I have to talk myself into continuing to live each day, I can’t talk about it except for a few select, very trusted friends who have also been there, as well as my therapist.
I shot this self portrait as a way to work through the cloud I was under, yes, but more importantly, to directly address depression and its stigma. Admitting you have or struggle with depression doesn’t make you weak or unworthy. It doesn’t make you a bad person. It doesn’t mean you’re not trying hard enough, eating right or getting enough exercise. It just IS. And society needs to learn to stop judging those who do manage to ask for help.
The alternative is that we suffer in silence with our tormentor. And that can kill.
Joel Robison happened to put up an insightful blog about his own battle with depression recently, which was a happy coincidence. I’m very glad for people like him who will stand with me and admit that yes, we have depression. It may not make sense to you, you may not understand it, it might *gasp* make you uncomfortable, but that doesn’t mean it will go away.We are no less human that you. We did not ask for this fight. This is not an attention-seeking behavior. This is real, this illness is out for blood. This is just our fight. This matters. And it can be won.One storm at a time.
This series is dedicated to all the others who fight this battle with me every day. You are all so strong and so brave. Don’t let anyone ever tell you otherwise.
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 believe I’ve mentioned before that I have a rather, uh, active dream life. My nights are often filled with deeply archetypal storylines, heavy with symbolism and metaphor, which, I suppose, is probably part of why I’m drawn to creating images along the same lines.
Sometimes my dreams are quite silly upon waking, like the dream I had where I was aboard Star Trek’s Enterprise (the original show) and Spock and I had to beam down to an alien planet so I could find my gold bikini (ah la Leia, in Return of the Jedi) which we needed in order to defeat the attacking alien army (different aliens than the ones who lived on the planet my bikini was on) and save the world. I don’t think I was ever clear on how my gold bikini would do this, but it made sense in the dream.
Sometimes my dreams are very serious and are clearly working through problems and fears, current or past. I had a whopper of a dream a week or two ago which I’m going to tell you about, as it relates to my most recent image.
This dream was set in the world of The Hero And The Crown, by Robin McKinley, one of my very favorite books; one of those comfort-food books I turn to again and again, especially in times of trouble. If you haven’t read it, go and do so. I’ll wait.
I was Aerin, the heroine of the story. Geoff was Tor, whom I was betrothed to. We lived in Tor’s parent’s castle (which doesn’t make sense with the book, but never mind) and nobody in the entire kingdom liked or understood me. My only friends were Tor and Talat, my horse, along with the rest of the castle’s horses. They had an entire army of war horses who would fight in formation on their own, without the aid of any human riders. I took great comfort in visiting the stables frequently to get away from the nastiness of all the people and be with creatures who loved me.
The great dragon Maur, easily as big as the castle and made of pure evil, had come back and was laying siege to the castle along with numerous other giant, pure-evil dragon friends of his. We were hopelessly outnumbered and everyone knew there was really no chance of winning this battle, but we had to try. The dragons could only attack us at night, but in this world it became fully dark at about 1 in the afternoon and stayed dark until the regular sunrise of 5-6 in the morning. This meant each night was very long.
Interestingly, Tor already possessed the Hero’s Crown, which ought to have given him the ability to fight the dragons off, but it wasn’t working. It held them off a little, just barely, but it wouldn’t survive another night.
I visited the stables after the first night, thanking the horses, some of whom had been greatly wounded or killed, for their bravery in battle. Quite a lot of them were also pregnant and foals kept popping out every time I turned around. We had a good talk and I felt encouraged after I left them.
I found Tor and told him that I had to travel back to my family’s castle to retrieve two magic rings. If we both wore them, then we would be strong enough to vanquish the dragons. The thing was, I could only tell Tor where I was going and why. I had to keep it a secret from absolutely everyone else. At the end of the dream, I was riding off on Talat to my castle to get the rings, knowing that everyone hated me because they thought I’d just deserted them when they were most in need. Dusk was falling as Talat and I galloped along and I knew I had to really hurry to get the rings and return to Tor’s castle in time to help everyone survive.
A couple things I should point out right away; Tor’s family in the dream is NOTHING like Geoff’s actual family. His family embodies that friendly, easy-going, pull-up-a-chair sort of Midwestern charm you always hear about. They’re truly all wonderful people, so don’t think that that part of the dream had any resemblance to reality! Also, as far as I know, there aren’t any large groups of people who hate me. I suppose I could be wrong about this, but again, the dream is not representing real life in this way.
After mulling it over a lot, talking to my mom (who is especially gifted at dream interpretation), Geoff and my therapist, I came to a few conclusions.
The dragons = ME. Now, to be fair, I actually like dragons, but my brain often uses them as a symbol for big, bad, evil things. (It also often uses Calantha to represent my inner child in dreams, which is just full of Freudian symbolism.) Fighting ME every day often really does feel like you’re besieged by dragons. You’re trapped in your castle (house/body) while an unrelenting assault of badness attacks (all of my ME symptoms; pain, fatigue, etc).
I was confused about the nights being so long until I remembered something I’d said to Geoff a few days before the dream. I had realized that most days I spend 11-12 hours a day in bed sleeping, or at least trying to sleep. If I can get a solid 11 regularly, I feel much better, but since my sleep is so poor, I’m often trying to make up for the bad sleep, so the time spent in bed creeps up higher. I was startled when I realized just how much time I spent every day just trying to sleep. I’d been getting frustrated, feeling like my days were so short and there were never enough hours… and while I know that pretty much everyone feels like there aren’t enough hours in a day, I suddenly knew why it seemed like my days really were getting much shorter.
ME also really messes up your sleep. And if you do find yourself up at 4 am, watching TV, taking a cocktail of pills to try and get back to sleep, as I often do, nights can feel especially long and lonely.
I think that the Hero’s Crown was all the stuff I’ve tried already to feel better, all of which promise to work and cure you, but none ever has. The rings were a hope of future treatments or cures. Going off to get them while things were most dire represented the typical path of trying a treatment, which usually involves over-exerting yourself in some way first (going to the doctor’s office, my several-times-a-year nerve-blocking injections).
I suspect that the crowd of people who disliked and misunderstood me is my fear of people not understanding that I actually am sick, even if I don’t look like it outwardly. This is an extremely common worry from anyone with an “invisible illness;” any sort of sickness which does not manifest in outward signs. I often feel the need to make sure new people in my life know that I have ME and have a basic understanding of what it is so that they don’t think I’m lazy, or that I just didn’t want to go to their party, or have dinner with them. It’s a pretty big fear, to be honest. Almost without exception, everyone who is in my life knows what my deal is and while they invite me to things, they’re all very understanding if I can’t make it, especially if I have to cancel last minute. I really, really hate to cancel at the last minute, but sometimes your body leaves you no other choices. The secrecy of my mission to get the rings was mirroring the invisibility of my case of ME.
As for the more pleasant things about the dream, Geoff as Tor believed me, and he also supported me even though the entire rest of the kingdom wished he wouldn’t. That’s 100% Geoff. He will love and support me, in a fantasy battle with dragons, or in the real world battling insurance companies. He is a fearless protector and someone I can always count on. I also liked that for the magic rings to work, we both needed to wear them. I think that speaks to the importance of having someone caring for and supporting you through this stupid disease. I can fight it on my own, but it’s a million times better to have an ally.
And lastly, the animals will always be with me. I have had a special kinship with animals of all kinds, since before I can remember. My dad likes to tell the story of how there used to be a couple of huge Great Danes in a house behind ours and how they would bark and bay and snarl ferociously through the small gap in the fence if they saw you. One day I came inside and said, “You know those big dogs out there? They’re really friendly!” Alarmed, my dad checked to make sure I still had all my fingers, then came outside with me where he realized that the Danes were causing a fuss because they wanted attention, not because they were aggressive. Then for a while I collected snails in a bucket and kept them as “pets,” which I believe led my parents to get my first dog because it was just so pathetic that I was gathering snails to be my friends. Animals have always been a big part of my life, creatures I can trust and rely on, who are as unchanging and solid as a mountain.
As I was meditating on the dream, I kept being reminded of a few big scenes from the biggest battle in last season’s Game Of Thrones. You don’t really need a lot of context for it, just that the good guys are trying to keep the very bad guys out, and they’re horribly outnumbered and outmatched.
(Sorry, YouTube won’t let you play the videos here, but if you click the little “YouTube” button near the bottom of the video screen, it will take you directly to the videos.)
It may seem silly to those who have never experienced ME, but this is what it feels like to me. Like you’re outnumbered 1000 to 1, the other side has mammoths and giants and all you’ve got is a fairly useless sword to try and fight them all off. There is no end in sight, and barely any hope that you’ll succeed. This is also the way a lot of The Hero and the Crown goes, which is part of why it’s one of my favorite books.
It may sound silly to those who have never know chronic illness’s cruel touch, but I’m willing to bet that everyone who has dealt with it will understand at once. It’s exhausting to fight an enemy every day, who you can’t see or touch. And even more so when some people don’t believe the enemy exists.
So, as I do, I had to take a self portrait to work through my feelings on this dream. What could be more DreamWorldy than an image inspired by an actual dream? I can imagine this being a snippet of DreamWorld’s rich history, perhaps during the Yellow King’s grab for the throne. I edited it with both The Hero and the Crown and Game of Thrones in mind, lending visual inspiration.
We sick will keep fighting. We will hold the gate.
My tripod it balanced on the mattress and the camera would shift slightly whenever Calantha, also on the mattress, moved. There was just enough room between my bed, the closet and all the other things in that part of the bedroom to make this work. Who needs a studio?? 😉
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 
Shades Of Sleep: Invisible Illness Day
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Sometimes I get a little daunted when May 12th rolls around each year, wondering what new I can say about the subject. If you didn’t know, May 12th is Invisible Illness Day; a day to bring attention and awareness to illnesses and diseases which don’t manifest obvious outward symptoms for the world to see. If someone has the measles or is in a wheelchair, you can hopefully tell that just by looking at them. Diseases like fibromyalgia*, Chronic Fatigue Syndrome*, Crohn’s Disease, multiple sclerosis, mental health problems, Complex Regional Pain Syndrome7, Celiac Disease, lupus, rheumatoid arthritis, Lyme disease and the one I have, myalgic encephalomyelitis* (ME for short) are considered invisible illnesses. This is by no means a comprehensive list, just a few examples.
According to Wikipedia and the 2002 US Census Bureau, 96% of chronic illnesses are invisible. This adds in an enormous extra challenge in obtaining proper medical care and treatment as well as being misunderstood by the population in general. If people don’t know that there are quiet, private, hellish wars being fought every day by millions of people all over the world, how can we ever expect our treatment to improve, let alone find cures?
That’s why May 12th is so important. We, the sick, need people to understand, to care, to help us advocate when our treacherous bodies won’t allow us to. Awareness is the critical first step in any change happening.
Why is it so important that we treat ME? What makes our disease so special?
It can be fatal. People die from this. If not from the disease ravaging our bodies for years and decades, then it often comes by our own hands as we can no longer endure the daily torment.
No one should have to live like this. As someone who has what’s considered only a “moderate” case of ME, I can tell you it’s a living hell. Pain is nearly constant, sometimes to the point where I’m in tears and desperately wishing to die. It takes away the plans you had for a normal, fulfilling life. Careers, hobbies and passions are taken from you. You either simply cannot expend the energy on anything non-essential, you lack the basic funds to sustain most pursuits because most of us can’t work, or your brain is compromised by what we call “brain fog” and you’re unable to focus on and accomplish anything. (More on brain fog later.)
We deserve to live happy, fulfilling lives, just like everyone else. When you’re constantly in pain, always exhausted and unable to think clearly, this doesn’t leave much room for whatever kind of life you wanted for yourself. And when I say exhausted, I don’t mean that we’re tired because we didn’t sleep well the night before. On a good day for me, it’s like how other people when they have the flu. A constant, crushing weight that makes the slightest exertion a Herculean effort. On bad days all I can do is lay in bed and drag myself to the bathroom periodically. Sometimes even feeding myself is a challenge. I might have to choose between feeding my animals or myself, because I don’t have the energy for both. And of course the animals always win; they’re my responsibility.
I am mostly house-bound and I require help with the sort of tasks I used to take for granted. Forgot something at the store? No problem, just go back tomorrow! Nope, not with ME. Any time I take a trip outside my home, I have to plan at least one full day of recovering at home from it. If it’s something late at night, very noisy and extra stimulating, plan on 2-3 days at least. (But frankly, late night, noisy, stimulating activities happen EXTREMELY rarely because of the damage they cause later.) When I do gather my strength to photograph models, that is my exertion for the entire week at least.
ME is extremely isolating. You can’t just go hang out with friends. You can rarely make it to family functions. Last year, I had to miss a surprise party thrown for my own mother, something which still upsets me today. I was just too exhausted to go, and I knew that if I REALLY pushed myself and forced myself to go, I would pay for it for a very long time.
ME is vengeful god. If you violate any of its insane decrees, you WILL be punished. Probably for a long time; sometimes forever. There have been cases where someone with ME did just a little too much one day, they spent the next day in bed… and then they were never able to leave it. At the same time though, if you try and do as little as possible, your energy supply will shrink and you’ll be worse off too. Damned if you do, damned if you don’t.
Right now ME received approximately 5 million dollars a year in funding from the US government. To put that in perspective, that’s about the same amount given to researching hayfever. Male pattern baldness gets at least four times as much. HIV/AIDS, which is comparable in both frequency in the population and severity of illness, gets about 600 times that amount. I’m not saying that HIV/AIDS patients shouldn’t receive that much; I think they should! What I’m saying is that ME needs to be recognized at all levels of society and government as the deadly, hellish disease that it is and get proper funding as well.
This year I decided to do something that was a big stretch for me physically. I planned a set of self portraits (all shot at the same time) with a rather complicated makeup look for my Enchanted Sleep series on living with ME. Doing that much makeup on myself normally would have been enough exertion for one day for me, but that plus shooting the images, even with Geoff’s generous help, put me in bed for days afterward with migraines pounding my head. But I’m not sorry. It was worth it.
Oh yes, brain fog. (Which I’ve got a bit of as I’m writing this.) It’s like when you have a fever and can’t concentrate or think clearly. Sometimes it reaches new heights where people suddenly can’t spell, remember their names or understand their native language. Most days it’s more like mentally wading through a bog, at least for me. I decided I wanted to portray this visually in the images I created since it’s such an annoyance at best and terrifying at its worst. I think it will be obvious how I incorporated that element into the images.
I have the video I took of me applying the makeup as well as the finished photos to show you, but I want to issue a challenge as well! I want you: you, who are reading this right now, to #GoBlue4ME! Why blue? Because that’s our disease’s awareness ribbon color. What does “going blue” mean? There are any number of things you could do to go blue. I created a couple images that you could use as your profile photos for May 12th, or even this whole week (or more!). You are more than welcome to download them and use them however you’d like! You could dress all in blue and post a photo of yourself with the #GoBlue4ME hashtag on any of your social media accounts. You could get a bunch of blue balloons, take a photo of them and use the hashtag on them too; anything blue works!
For makeup artists, I’m issuing a special challenge. As you’ll see in my video applying my makeup, I used ONLY blue shades for this entire look. Foundation, concealer, eyeshadows, blush, mascara, EVERYTHING. I challenge you all to do the same and post your looks using the #GoBlue4ME hashtag! If you’re on YouTube and create makeup tutorial videos, this would be perfect for you. There are so many fun makeup challenges going around YouTube, Instagram and other social media sites; let’s make this the next big trend! You’ll not only be stretching yourself, you’ll be contributing to a wonderful cause and helping us raise awareness for the whole world!
I did allow myself to use shades of teal, green and purple in my look because they’re offshoots of blue and I really thought it would make for a better overall look, so feel free to do the same. And you don’t have to make the blue tie into your foundation color as well, but bonus points to you if you do. 🙂 Let’s have some fun, create gorgeous looks and help a community in need of a lot of support by coming together!
Ready to see the video and my images? Here you go! I’ll be releasing the images individually over the course of the week leading up to May 12th, but you can always find them all here.
And please, pass these around! Share the links, video and images with anyone and everyone! We have to make a lot of noise to get the change we so desperately need. You have my full permission to share far and wide!
And please, if you take up the #GoBlue4ME challenge, let me know! Of course, I can search the hashtag and see what you guys have been up to, but I’m very excited to see what you come up with!
One last note, your going blue does NOT need to happen on or before May 12th. Keep doing it as long as you’d like to! The longer we can keep the word spreading, the better.
Thank you to absolutely everyone who has and will participate in this! You are helping so many more people than you know. I thank you from the deepest wells of my heart.
Download these images and make them your profile photos for a day!
Shades of Sleep, © Sarah Allegra. A self portrait about brain fog and living with myalgic encephalomyelitis.
Shades of Dreams, © Sarah Allegra. A self portrait about brain fog and living with myalgic encephalomyelitis.
Shades of Blur, © Sarah Allegra. A self portrait about brain fog and living with myalgic encephalomyelitis.
*[There are various theories and arguments about weather ME, CFS and fibromyalgia are all the same disease or separate. You’ll find as many different opinions as there are sufferers. It is my personal belief that they’re probably all the same thing, or at least all very closely related. Some people are extremely militant about using the “correct” name; I find it more important to help people understand by using the name they’re most familiar with. I tend to use them all interchangeably depending on the situation and who I’m talking to, but if I had my druthers, I’d simply call it ME and be done with it.]
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