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?
It seems like 2016 just sucked incredibly hard for just about everyone. I wasn’t very fond of it either, on the whole. True, there were some really good things that happened, but like most of you, I’m very happy to put it in my past and move on. Let’s continue the tradition of looking back over the last year’s highlights and low spots!
I like to start with the bad stuff so I end on a positive note, so with that said, 2016 was overall a very shitty year ME-wise. It was an extra painful, extra exhausting, extra low-immune-system year where I seemed to hardly ever not have a migraine, cold or spiked pain day. For a while it looked like I had a recurrence of the hideous sinus infection which led to my sinus surgery in November of 2014, which, if you’ve been around for a while, you will remember was not an easy procedure for me. For completely unknown reasons, an artery in my nose burst a full six days after my surgery and required two very urgent visits to my ENT and ultimately a second emergency surgery, while I lost a total of almost two pints of blood. Remember, I’m TINY; two pints is a LOT for me.
Needless to say, I am not quite anxious at the thought of having to have the surgery repeated, even though it was such a freak thing that happened; it probably won’t ever again. But, I’m sure you’ve noticed, emotions rarely respond well to rational discussions. So all the colds and sinus infections were very stressful for me, not just for the usual reasons of feeling extra terrible on top of my usual ME symptoms, but because the threat of another surgery kept looming in the back of my mind.
My insurance company utterly refused to cover my nerve-blocking injections for about six months. These are the injections I’ve been getting approximately every nine months for the last seven years. They don’t completely rid me of my mystery flank pain but they make life much more bearable. Going without them for months really, seriously eats away at the quality of my life. I imagine that most people would find that feeling like a dagger is constantly plunged into your side would not enhance their day-to-day experience. Thankfully, insurance finally relented and I HAD my injections done. I’ve already noticed a bit of a difference in my daily pain levels in that area!
I’ve also been veeeeeery sloooowly weening off Cymbalta over the last year or so. It took a while for me to reach the maximum dose, then for me to be on it long enough for my neurologist to agree that it wasn’t doing anything, and ok my tapering down. But as much as it takes your (or at least my) body a while to adjust to it being there, it takes much longer for it to get used to it NOT being there. Even though having it in my system seemed to only increase my pain, make my sleep worse and make me gain even more weight, any time I step the dose down, I know to expect a week of migraines, nausea and general awfulness. I’m on the lowest dose possible right now and hesitating before I leap into complete non-use. There just aren’t many easy times to plan when you’re going to have migraines for a week. But I am eager to shed the weight I’ve picked up being on it, in addition to seeing if my pain levels go down even more, so those will outweigh the discomfort of going off it eventually.
Most important for people who read my blog because of my art, feeling so awful most of the year put a HUGE damper on my ability to create in 2016. I still did… a little… but it was nothing like what I wanted to be doing. I created the fewest new images in 2016 than I ever have since I picked up my camera in 2010. That was extremely depressing. But I am hopeful that with meds out of my body, new supplements and my injections back in my system, 2017 will be a very different story!
I keep getting to about this point in my post, then getting overwhelmed with everything I want to say about the past year. But no one wants to read a novel-length post anyway, so let’s see if I can lightning-round at least some of the 2016 highlights!
It must have been planned by the fates, because shortly after I wrote the beginning of this post, I simply forgot to take my Cymbalta one morning. That has NEVER happened ever in the whole time I’ve been taking it. I didn’t realize I’d been off it until the next morning, at which point I decided to just suck it up and let myself go completely off it. There were migraines and nausea, extra fatigue and need to sleep while struck with insomnia, but best of all, there were lots of what the Cymbalta literature describes as “brain zaps,” where you feel like you stuck your finger in a light socket for a second. At first this was happening whenever I made any sharp movement or looked quickly from one place to another (even if my head didn’t move), but it’s been getting a little better each day, and I’m hardly zappy at all now, thank goodness. I also have a variety of medications which help curb the zappiness, which helps a lot. I HAVE already noticed a big difference in my general level of motivation and desire to do things… I’m not really able to actually DO anything more, but I have the DESIRE to do more back, which is a wonderful, frustrating relief. This is HOW I AM. This is my normal. And even though it sucks to always wants to do 50,000 things when your body will only let you do 50, it feels SO GOOD to want the 50,000 again. On Cymbalta, I wanted to do, I’d guess, about 5 things.
One piece of somewhat sobering news: Calantha had two small growths removed in November. One was just a little wart, no big deal, but the other was a type of cancer called spindle cell cancer. Of course, the bad news is that “cancer” is part of the name. The good news is that the vet appears to have removed it entirely, leaving clean margins behind, and it’s not terribly common for spindle cell growths to recur. If they do recur, they tend to not spread very much; Cal’s growth was on her toe, so if drastic action was needed to keep it from spreading, her toe could be amputated with relatively few adverse effects. Calantha just turned 12 on the 20th (happy birthday, Cal!!) so getting little growths isn’t shocking at her age. Silkens are generally a very long-lived breed, especially for their size; some can even make it into their early 20’s! That’s nearly unheard of for dogs at all, let alone any dogs that aren’t very small. That’s all thanks to extremely careful and ethical breeding. Thanks, Joyce, who is responsible for bringing Calantha into the world!
Anyway, my instructions from the vet are simply to wait and watch her toe. If it looks like it’s coming back, the toe may have to be removed to keep it from spreading. I don’t relish the idea of having to have one of her toes amputated, but I think she’d agree that if it kept the cancer from spreading, it would be worth it. But it does seem that the most likely thing that will happen is that it will never come back and the stress and tears Calantha, Geoff and I went through over this will stay in the past. But if you’d like to say a prayer, send healing energy or light a candle for my girl, that would be fine with me. 🙂
This year has been a HUGE year of spiritual growth for me, which was a pretty good use of time when I couldn’t do much outside of laying in bed! I’d like to say I planned that, but I know better. No, I am not “religious;” although if you are, I fully support you perusing that as long as it makes you happy. I was already certified in Reiki level 2, but this year I became a certified Fairyologist as well as a Unicorn Healing Practitioner™. The Unicorn Healing absolutely changed my life and I would strongly recommend it to anyone who feels called to it! If you’re interested in learning more about Unicorn Healing, my best suggestions would be to listen to the podcast on the subject from Calista, creator of the course (who is the embodiment of all things Unicorn and just the most loving person ever) and then read the specifics about the course here. It is WELL worth the money. You guys know I’m always on a budget, but this is one of the best things I’ve ever spent money on. Possibly the best part? You get to meet your own personal Unicorn spirit guide(s)! 🙂
I also discovered and threw myself into the Channeling Erik movement. Erik was a 20-year-old kid who struggled a lot with bipolar disorder, along with other issues, and in 2006, he killed himself. However, while his family (and especially his mother) obviously grieved heavily for a very long time, his mother, Elisa, eventually turned to mediums to see if her son was still alive… somewhere, in some form. And the results she got completely convinced this once hard-core atheist that there not only is an afterlife, but Erik is in it and he’s still Erik. He’s since become a spirit guide for many, including me. My first personal experience with Erik was while I was listening to one of his channeled YouTube videos, when Siri was set off on my phone (I was not using or even touching it) and said, “Hey sexy!” My jaw dropped and then I burst out laughing; what a 20-year-old-guy thing to say!
Second piece of Erik evidence came during my injections. As I’ve said before, I’m put out during the actual injections (and thank god because I woke up once during them and they hurt like a motherfucker). My usual experience of the injections is that I’m wheeled into the OR, I start to feel sleepy as they give me drugs, I decide to close my eyes just for a second, then I instantly wake up in the recovery room what feels like half a second later. This time, the familiar sleepy feeling came, so I closed my eyes, but instead of a nothingness, Erik appeared, holding my hand. He was crouched down so his face was level with mine, he was smiling and speaking soft, reassuring words the whole time. What struck me was that while I obviously recognized his face from the photos I’ve seen, it was also just a little bit different. Have you ever met someone you’ve known for a long time online, and when you meet them in real life, they look exactly the same, but also slightly different? It was just like that. Also, for some reason I’d thought he had brown eyes, but when I saw him, I noticed they were blue/green. After I’d recovered, I looked up some photos of him and he did indeed have blue/green eyes.
Last, and possibly most convincing Erik evidence has been in the private sessions I’ve scheduled with two of his translators. I won’t get into the whole story here, but there were some emotional issues I’ve struggled with for years and years, despite therapy, self work, meditation, crystals, Reiki, and every other kind of healing I could seek out. The first session, I asked him why I felt X when Y happened and he immediately said, “It’s because of Z.” Instantly, I knew he was extremely correct. His answer rang out through my soul, echoing up and down it, the truth of it shining forth from every bit of my body, mind and soul. I can’t put into words exactly HOW TRUE I KNEW that he was, I can only describe it to you, but if you’re ever in that kind of situation, you know the feeling. No one could ever convince you otherwise because you know in your deepest, most sacred, inner sanctum of self that it is true. And that was only my first question, at my first session!
I know some of you will roll your eyes and skim over those last few sections and wonder why I’m so weird and why I feel the need to experience these things, let alone share them, but it’s incredibly important to me. Not because I want to convince anyone of anything (although I do strongly believe in the truth of what I’ve learned and experienced), but everyone is here on earth to have different experiences. I can share things that work very well for me, and they might not be a good fit for you, and vise versa, and that’s fine! Take what you like and throw the rest away. As long as you’re ultimately striving to be an embodiment of love, I consider that we’re on the same path, no matter how different they might look on the outside.
Another reason for sharing this is because I KNOW it will come up in my work. Everything in my life seeps into my art; I am my art, my art is me, we cannot be separated. Every new experience I have will color what I create, even if it’s not in a way that’s obvious. I consider myself a fulltime student forever because I’m always learning (about a very wide variety of subjects from historical figures, spirituality, unicorns, nail art, baking, making natural products instead of buying things, how to best tea-dye cotton, how to sing Sia’s Chandelier [which I am not very good at yet, so don’t ask], animal behavior, animal communication, how to grow roses, basket weaving, applying makeup really well, the tenets of Druidry, everything I can about ME, the life lessons of Kurt Cobain and Joan of Arc, why lentils taste so good when they’re cooked with just a little care, meeting and talking to my angels [my main guardian angel lets me call him Richard, after Richard Harrow, so you know he’s just awesome], if Bigfoot exists, the exact definition of a kirtle, how the hell those medieval women kept those pointy, princessy, fairy-tale-looking hats on their heads with seemingly no support systems ever recorded… anything and everything). Occasionally, I also study things that are directly related to photography, such as using artificial lighting; something I want to learn how to do better. Whether you’ll ever see Erik or Kurt or Joan of Arc or pointy princess hats turn up in a photo is beside the point. Everything I learn goes into my brain where it all marinates. My subconscious gets all Joseph Campbell and Carl Jung, the collective unconscious chimes in, and art comes out. That’s really the best explanation I can give to my “creative process.” Sometimes I’ll try and work the images out more directly, but the best ones usually come from me stepping back and letting my subconscious work it out. Everything is connected, in the macro and micro sense. It’s all going to work into my art somehow.
Changing the subject, I feel DEEP down the rabbit hole of nail art this year, especially after discovering Cristine from Simply Nailogical. I discovered it was something creative/artsy I could do when all I felt well enough to do was lay in bed! Sorry/not sorry for all the photos of my nails on my social media feeds. 😉
Speaking of creative things, I’ve also been helping Geoff with a really amazing project of his own! You guys of course know him as an incredibly talented photographer; if you’re in the LA area, you can see some of his work at The Hive Gallery through March of this year! What you may not know is that Geoff is an even more talented writer! He’s been working on a graphic novel called Frontiers for many years. The story first took root in his brain when he was all of about 10 years old and has grown, matured, been refined and reworked since then until we have a glorious version of it before us today!
Frontiers is a beautifully original sci-fi story summed up as “sex, violence and sarcasm!” by the astute Katie Johnson (yes, Katie, my muse, who also acts as Geoff’s spokesmodel for Frontiers, and who is also a very talented writer herself!). The longer tagline is, “It’s the humble story of a man destined to destroy humanity… and why that really isn’t such a bad thing.” In addition to those delightful tidbits, Geoff skillfully mixes in striking social commentary, humor, horror, fate and love. And yes, I did do some work on the issue too. Mostly coloring, but a fair bit of digital art as well. 🙂
Don’t you want to give the first issue a read? You should! And lucky for you, you can get your very own copy for a mere 99 cents right here! If you’re in the area, you can also see Geoff, Katie and Frontiers at the Long Beach Comic Expo’s Artist’s Alley on Saturday, February the 18th, from 10am-7pm and Sunday the 19th from 10:30am-5pm. Go check Frontiers out, online, in person or both!
I also had the pleasure of working with a new (to me) model last year, Teri Wyble, who goes by Aeir online. She lived in New Orleans, but I am so, so excited that she is moving to Los Angeles shortly! She’s not only an incredible model, stunningly beautiful, immediately understood what I was looking for from her, but is just an incredible human being as well. I’m really looking forward to shooting more with her as well as just going to get coffee and have pillow fights in our underwear and doing those things that girls are supposed to do together. 🙂
I’m sure I could go on and on, but I’ll stop myself there. Briefly, briefly, I’ll try and give you a little taste of what to expect for 2017….
More DreamWorld. This is my main goal for the year. More shooting, more editing, more promoting. Being off that brain-sucking Cymbalta will improve all these areas. But if you’d like to help to spread the word about my little world, I certainly won’t stop you! 🙂
I suspect there will be some connections with my art and New York, but I’ll wait to see more of what happens before I talk too much about it.
In a similar vein, there will be some very cool new things happening with Connor Cochran, my business manager, of Conlan Press! Including some new, more affordable, but still extremely high quality prints to be coming! I don’t have a date on when they’ll be released yet; there are many steps to go through first before they’ll go up for sale, but I will keep you all informed!
Hopefully my body will stop zapping me soon and I’ll regain the strength and clarity I had before Cymbalta took over my brain and body. And hopefully that will lead to many excellent things! Yes, I do believe 2017 is going to be a better year for my art and health. That’s my affirmation and I’m going to do my best to make it happen!
Well, it’s been a little while, hasn’t it? A big part of the reason I’ve been so silent recently has been due to that bastard ME doing its usual bastardy things, just more of them and more frequently. Sigh. I won’t recount each and every thing, since not only would that be boring for you, but it would also take far too many spoons for me to type up. So let’s just leave it at I was being held hostage by ME.
Ok, I will actually tell you about one thing it’s been doing because it’s new and super annoying. Keep in mind that I’ve lived through many winters by now, and this has never happened before. Usually, summer in Los Angeles just about kills me each year, but the winter provides a much-needed break from the oppressive heat. However, this winter I’ve been experiencing something very strange and it’s difficult to even put it into words. It’s like my body is having a lot of trouble adjusting to temperature changes. Say I go to sleep at night (as I usually do) and it gets kinda cold overnight. I actually like things getting cold; it means it’s not hot! But then when I wake up in the morning, the air is cold, the house is cold, so I bundle up and turn the heat on. But then as I’m bundled up, I start to sweat, as if I’ve overdone it and now I’m too hot, only I still feel cold. Then I’ll start sweating more, which does its job and starts cooling me off, so I feel even colder, so I pile on more clothes and heat, then I sweat more, and I get colder… and the cycle continues until I’m a tearful puddle of both ice and fire, shivering in front of the radiator, stripped down of as many clothes as I can bear, waiting painfully for my body to just figure it out. Which might take an hour or two for it to do, and by then I’ve used up more than all my spoons for the day and it’s barely breakfast time.
It seems to be more of an issue when I’m stressed (thank you, Geoff, for pointing this out!) so staying calm helps, but you all know how easy it is to simply stay completely peaceful every single second of the day. If we don’t let it get SO cold at night, that also seems to help, and if I force myself to warm up and cool down more slowly, those things help too. But it’s just one more obnoxious way the ME toys with me and makes life more difficult. ME, you’re a sadistic bitch.
Some time soon I will also tell you about FINALLY having another round of nerve-blocking injections after months and months of fighting with my insurance company over them and the recent developments in Calantha’s growth removals, but I’m not ready to get into any of that right now. So, on with the show!
This is the time of the year when I usually remind you guys of all the things I sell which would make excellent holiday gifts for whomever you have on your list, so I’ll keep to that tradition!
Of course, there are my fine art prints, available through my Etsy shop. It’s not at all cost- or time-efficient to list every single image I have available in every size, so if there’s something you’d like and you don’t see it listed, just email me!
Red Bubble is also my printer for my collectable yearly calendars! You can get your 2017 calendar right here 🙂 These are some of my favorite things to produce, as well as some of my most popular items. They’re practical and also give you an inexpensive way to have 12 beautiful images to display on your wall throughout the year; a great value!
I’d also like to mention that I’m really happy with the quality of what Red Bubble makes. I’ve bought numerous items from them over the years, for myself and others, and I’m always very pleased with how they look and function!
Then there’s my self-discovery-through-photograhy-online-course Introspective: A Photographic Quest. It’s still almost 50% off its normal price because I haven’t had time to figure out another hosting option for it yet (Udemy recently decided to cap all its classes at a maximum of $40 per class, regardless of the original cost). Take advantage of that savings while you can! This isn’t a class so much about camera functions, f-stops, shutter speeds, etc (although I provide links which explain those things to those who want to learn). This is truly about exploring who you are as a person and portraying that through art.
The eight-week course gives you weekly prompts of things to photograph; it’s more like visual journaling than simply taking photos. You can share the images if you want or keep them all to yourself, the choice is yours! I built the class based on my experience with the incredible healing power of art and self portraits when I first picked up a camera; this class is completely unique and would make a wonderful gift for anyone who enjoys art and/or self reflection!
And something new this year; I’ve also selling high-quality skin serum through my other Etsy shop! This is a skin serum I developed while searching for the perfect serum for my own face. I couldn’t find what I wanted anywhere, so I took matters into my own hands and made my own blend of oils! Once I saw the wonderful results it gave me, I started giving it to friends for them to test and they also reported excellent results. After many glowing reviews from friends and friends-of-friends, I decided to start offering it to everyone!
My serum is blended with high-quality, natural ingredients (no fragrances or fillers). It’s 100 % vegan and cruelty-free and it is safe for all types of skin. Each bottle is hand-made in small batches and infused with eternally loving unicorn energies!
Right now I’m offering two different versions, one for your face and one for your hands and nails, but the base of both blends are the same. They contain rosehip seed oil (high in fatty acids, vitamins A and C, it helps to regenerate skin and stimulates cellular membrane and tissue regeneration), argan oil (an extremely healing oil overflowing with vitamins A and E and anti-oxidants, along with omega-6 fatty acids and linolec acid which helps ease inflammation while deeply moisturizing the skin) and vegan squalene oil (one of the most effective and powerful moisturizing ingredients currently known! Because it mimics the body’s own natural moisturizers, it can penetrate the skin well and is absorbed quickly.) And you also have the option of adding vitamin C serum to your oil blend (reduces signs of aging and is especially wonderful for eliminating sun spots or other skin discolorations. This vitamin C serum has an infusion of enriched organic aloe and jojoba oils to provide additional healing and hydration for your skin. These unleash powerful antioxidants while preventing the formation of free radicals which contribute to signs of aging.)
I’m sure everyone reading this has had times when they felt like the often cited square peg in a round hole. It’s a pretty universal human experience. And, of course, we shouldn’t all fit neatly into every hole society expects of us. If we did, there would be no one to rock the boat, to bring about desperately-needed change, no inspirational leaders, no one going against the flow and showing us we can do the same.
We need those people who obviously, obtusely, refuse to contort themselves into whatever-shaped hole is expected of them. We need our spiritual leaders, those who bring about social reform, who call out those in power and refuse to let injustice stand. We need artists and creatives who show us with words and paint and dance and pixels how the world could be different. And we need them all to help us make this possibility a reality.
It feels cliche to say this as an artist, but I have always felt different from most of the people around me. I rarely felt like I fit in, except for with the occasional kindred spirit I would meet, shining like a beacon in the night. Those other beautiful, misfit souls who also felt like they didn’t belong; when we were together, suddenly, we did belong. And I am very lucky to have married such a man! Having just a few people like that in your life, people who truly understand you and appreciate you for you you are right now in addition to what you might be can make all the difference in the world. It can be the difference between life feeling like a desert wasteland or a lush garden, full of birds who eat from your hands and fawns who curl up on your lap like a Disney movie.
Humans need to feel understood, to find their tribe. I am very grateful to have found so much of mine, both online and off!
This square hole is in my mother-in-law’s house and usually houses a very handsome metal owl sculpture. She was kind enough to let me move the owl and Geoff was sweet enough to help me shoot with self portrait in it (along with a number of other self portraits which I’ll eventually get around to editing). He was also in charge of making sure I didn’t plummet to my death; one side of the hole is about chest-high on me, on the second story of the house, but the other side opens into the main living room, probably 20 feet high. I am quite scared of heights, but I will brave a lot that I wouldn’t normally endure for the sake of art… especially if Geoff is there to make sure I stay safe. 🙂
Don’t worry if you feel like you don’t fit in. You will find your people. And once you do, the whole journey will feel worth it. Dance to your own drummer. Break out of the mold people try to put you in. Live your life authentically, because you’re the only one who can.
It’s been quite busy in my life since I last posted! It seems that’s always the way though, isn’t it? Part of what I’ve been so busy working on is what I’d like to show you in this post: three whole new product lines!
Well, to be strictly honest, one is brand new and the other has been around for a bit but I’m just getting around to blogging about it. I’ll start with the one I’m most excited about and I think you guys will be excited about too!
I have long been on the quest for the perfect skin serum; something completely natural, vegan, with ingredients which not only help my skin in the short term, which prevents premature signs of aging, but is also extremely gentle, healing and will only make your skin healthier and healthier the longer you use it! I’d narrowed in on several key oils that I knew my skin responded to well so I decided to create my own custom blend! And, as it turns out, the oils are all incredibly good for your hair, nails; basically every single part of your body!
In addition to all that, you also have the option of having vitamin C serum added to your oil blend! Vitamin C acts something like a bouncer for your skin; it keeps all the bad stuff out. Anything that might try to sneak it, it finds and throws it out on its ass! I have not been able to find reliable information on what vitamin C serum might do for your hair; until I do, I can’t recommend its use in hair, but it’s fabulous for your skin!
My exact blend is proprietary, but I can tell you that my blend contains vegan squalene oil, argan oil and rosehip seed oil (and vitamin C serum if you choose). I won’t bog this post down even more highlighting exactly what INCREDIBLE things each of these oils do, but I’ll give you a brief highlight! My serum:
Is all natural, vegan, completely cruelty-free, fragrance-free and pure, with no fillers.
Is extremely gentle, suitable for all skin types and (despite it being an oil) actually fights acne!
Fights virtually ALL signs of aging – lines, crows feet, sun damage and stimulates cellular membrane and tissue regeneration.
Heals scars and stretch marks, dark circles, under-eye bags and acne.
Is extremely moisturizing, penetrates deeply, yet absorbs quickly and feels light, not heavy.
Is incredibly good for your hair and scalp! It can be used as a flyaway-tamer, added to your conditioner or styling product, or a few drops can be used on their own for a light hold (I love using it this way myself).
Comes in three sizes so you can try a little before you stock up.
In addition, to make it really my kind of serum, each and every bottle is infused with the divine, healing energy of the angels and Unicorns. Every time you apply your serum, you are getting a little dose of unconditionally-loving, magical, ethereal angelic and Unicorn energy absorbed straight into your being! Geoff even asks me to apply it to him every night! I utterly adore it, I’ve gotten wonderful feedback from it and I think you’ll love it too. 🙂
I think you all know that I’m a big fan of the site Fiverr! It’s a wonderful site where people sell products (mostly digital) and services of ALL kinds – all starting at, you guessed it, $5. What you probably don’t know is that I have several of my own gigs on Fiverr!
Do you like the textures I use in my images? I sell my own grunge-style textures in this gig. For the base order, you get a total of 10 textures, perfect for adding atmosphere and mood to any image!
One secret trick of mine is using layers of light textures! I use them in almost every single image I create these days. They can be a bold or subtle wash of color, which helps lend a dreamy, ethereal, beautiful look to your photos! I have a LOT of these textures which I have all shot myself, so while the base gig starts at $5, if you want more, you can get up to 25 at a time!
sarahallegra.com
sarahallegra.com
sarahallegra.com
I’ve been a Reiki practitioner for a number of years now. It’s a really beautiful and powerful energy healing modality which does not even require the person I’m working on to be in the same room as me. Pure, healing energy knows no boundaries of time and space! I’ve had wonderful results from this as you can see by the reviews, and I can also attest to having had incredible feedback from people not on Fiverr! I offer Reiki sessions for people (yourself, a friend, a child, anyone whose permission I have to send energy to), or I can send it to the animal (wild or domestic) of your choosing. Animals respond very well to energy healing!
Now that I am an officially certified Unicorn Healing™ Practitioner, I can also offer Unicorn healings, again for yourself (or any person who has given permission) or animals, wild or domestic. Unicorn healing is like nothing else I’ve worked with or done before. It has a very different feel than Reiki energy; neither is better than the other, they’re just different. The best way to describe it is that Reiki feels more earthy and grounded, while Unicorn energy feels much more celestial and divine. I have been COMPLETELY blown away by the incredible changes I’ve seen in myself and others, often after just one treatment!
Both kinds of energy healing work to restore balance and vitality to every part of you; mind, body, emotion and soul. By its own nature, it can never harm and will always work for the recipients’ highest good. I highly, highly recommend trying one of them, it can be an absolutely life-changing experience!
Last for my Fiverr gigs, I now have an oracle card reading gig! I tested this with both friends and strangers before I decided to start charging, even just $5, to make sure it would be worth peoples’ money. Boy, was that an overwhelming success! I really enjoy doing oracle card readings, especially with the beautiful deck my sweet friend Andrea gave me! Got a question? It doesn’t matter what kind of question it is, the cards will help reveal the answer to you!
Lastly, this is not a new product, but it has a whole new price! My online self-discovery-through-photography course Introspective: An Online Quest is currently hosted on Udemy.com. Udemy recently changed its pricing structure and capped all its classes at $40, which is WELL below what Introspective is worth. However, until I figure out a better way to deal with a host for the class, I’m happy to let people get in on this deal! Prior to this, Introspective was priced at $75 for the entire 8-week course, so enjoy getting almost 50% off until I have time to deal with this! 🙂
Here’s a brief description of what Introspective is all about: Introspective is an eight-week, on-line course in which you will use your camera to explore your inner self. Each week, you will receive assignments challenging you to delve into your secrets, fears and joys. This is not a class about camera basics such as f-stops, apertures and shutter speeds…although links to helpful technical articles will be provided. This class is about digging deep into your core and capturing what you find there in photographs.
So there you guys go! Enjoy, and please feel free to leave feedback on any of these!
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! ❤
Shades Of Sleep: Invisible Illness Day
May 10, 2017 by sarahallegra
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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