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?
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.]
Here’s something I’ve never done before: create an image intending for it to be black and white! I have one other image that was converted for a magazine which required it to be black and white to print it. I LOVE me some color. I like using color strategically and thoughtfully. But something made me think about doing this most recent image in black and white and I loved the idea. It would be a bit of a challenge and a stretch for me and that’s a good thing.
This image came to be through two sources. One was a way to help me deal with the grief I was still feeling. The other was this astonishingly beautiful solo by Ricky Ubeda for the show So You Think You Can Dance, and the gorgeous music and poetic lyrics by David J. Roch.
Don’t lose your soul as your eyes roll shut Don’t worry, it will be over
You know what’s to come to not accept this Don’t lose your soul, you must fight for each breath Don’t go quietly
My soul has flown and I am what is left I am skin and bones
Who else can look exactly like a leaf being blown across the stage??
When I first watched this dance, it was on a day when I was heavily grieving and I started weeping uncontrollably as I watched it… and was still compelled to rewind the DVR and watch it over and over. I’ve probably seen it 20 times now in about a week. I immediately tracked the song down, downloaded it on Itunes and have been listening to it on repeat in the car since then.
I can’t quite verbalize what it is about this performance that moves me so much, which is part of why art exists; to give voice to that which we can’t say. Though it brought so many tears out of me, there was a hopeful, soothing quality to it within the darkness. And since I can’t tell you exactly how it makes me feel, the next best thing I could do was create a self portrait.
With Ricky’s evocative dance, David J. Roch’s sober lyrics and Andrew’s death rolling around inside my head, I shot a self portrait which was, as it usually is, very healing to do. I felt lighter after it.
The “I am skin and bones” refrain immediately made me think of black and white; the visual equivalent of being reduced to simple skin and bones. The door and handle are holding my body up, and my face is mostly in shadows to reflect both the dark lyrics and my dark emotional state.
I purposely left on my metal bracelet, which I wear every day. It was made by a lovely person on Etsy who will hammer whatever phrase you’d like onto your bracelet. Mine reads “That’s what heroes are for.” A daily reminder to be brave, to continue striving, to be ready to sacrifice for that which is important. And to me, it was vitally important to include it within this self portrait. Though its meaning will only be known to me and those reading this, it is a flash of hope and strength at a time when it was most needed.
And that is all I can verbalize about the meaning of this image. Editing in black and white definitely used different artistic muscles. I enjoyed the change of pace, but I don’t see myself becoming solely a black and white photographer; I love color too much.
I hope you enjoy this experiment down the black and white lane! And I also hope that you will vote for Ricky Ubeda in the upcoming weeks of So You Think You Can Dance; I already believe (and hope) he could win the whole contest! Thank you to Ricky and David J. Roch for providing the art that I needed just when I needed it. Full song lyrics are below the photo!
Skin and Bones
Skin and Bones – detail
Skin and bones, by David J Roch:
Don’t lose your soul as your eyes roll shut Don’t worry, it will be over Hold on though, you’re alone, I am there with you That much at least I can promise
You know what’s to come to not accept this Don’t lose your soul, you must fight for each breath Don’t go quietly
Don’t cry out for God Just breathe in and out Don’t cry out for God Just breathe in and out
We are but lambs to the slaughter now I have no fear of death itself So don’t try and save me and please, God, forsake me I’ll suffer alone, I just want to be left
My soul has flown and I am what is left I am skin and bones I am skin and bones I am skin and bones I am skin and bones I am skin and bones I am skin and bones I am skin and bones I am skin and bones I am skin and bones I am skin and bones I am skin and bones
Mythic Pictures 
Shades Of Sleep: Invisible Illness Day
Posted in Uncategorized, tagged #GoBlue4ME, above, adobe, adult depression., advocate, androgyny pallet, angel, antidepressant, anxiety, art, art series, art therapy, artist, auto immune, awareness, beauty, beauty killer pallet, bed, bed bound, ben nye, BH cosmetics, blue, blue hair, blue lipstick, blue makeup, blue wig, blur, blurry, blush, braid, brain fog, bunny, cathartic, Celiac, CFS, challenge, chronic, Chronic Fatigue, chronic illness, chronic pain, cognitive dysfunction, collaboration, colored eyebrows, colorful, conceptual, condition, contour, cream, Crohn's Disease, cruelty free makeup, D810, debilitating, depression, Deviant Cosmetics, disability, disabling, disease, Disequilibrium, dizzy, dreamworld, dreamy, editorial, emotional, enchanted sleep, ethereal, exhausted, exhaustion, eyeshadow, faint, fatigue, fibro, fibromyalgia, fine art, fog, Ghost Violet, girl, glitter, grav3yardgirl, graveyard girl, health, hidden disabilities, high fashion, hopeless, house bound, human guinea pig, illness, insomnia, invisible disability, Invisible Illness, jeffree star, lace, lavender, lensbaby effect, lilac, lipstick, los angeles, magic, makeup, makeup artist, makeup challenge, makeup collab, matte, may 12, ME, ME/CFS, medical, medication, mental state, metaphor, mineral makeup, MUA, myalgic encephalomyelitis, neuro immune, neurological, nikkie tutorials, nikkietutorials, nikon, Nyx, only blue, pain, pallet, personal, photo series, photographer, photography, photoshop, physical, pillow, portrayal, powerful, purple, raise, raising, robe, sarah allegra, self portrait, self portrait artist, self taught, shadows, shot, sick, sickness, sleeping beauty, social commentary, social stigma, spin, spoonie, spoons, stigma, suffer, sufferer, swamp queen palette, teal, therapy, tired, vegan makeup, victim, violet, wig, woman, youtube, youtuber on May 10, 2017| Leave a Comment »
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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