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.]
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.)
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! ❤
I have actually known about Forgotten Plague for a couple of years and I’ve been anxiously awaiting its release!
Now, finally, the documentary has been completed and it is available to stream through Itunes or Amazon for $4.99. That is an amount I am more than happy to give to help support one of the few existing documentaries on ME/CFS.
Forgotten Plague’s creator, fellow ME/CFS sufferer Ryan Prior, does an excellent job of explaining just what ME/CFS is (as far as we currently know), what makes it so complicated to understand and treat, how it has been stigmatized and ignored by the medical community, and hopeful glimpses of a future with answers… maybe even a cure.
Honestly, I woke up today already at the end of my energy. I feel like I can barely string words together right now, but this movie is far, far too important for me to not spread the word about it right away. We NEED movies like this. We need people who do not have ME/CFS or personally know someone with it to understand our struggle. We need healthy people to help us fight for answers. We need the stigma and misunderstandings to end. We need people to have any idea what we’re talking about when we tell them we have myalgic encephalomyelitis.
Please watch Forgotten Plague, tell your friends about it, share it on social media. This excellent film could help our community in profound ways, and we need that to happen. Everyone wants to be understood. At worst, watching this movie will help you get what my life is like.. and why I have had to slow down so greatly in all areas. And you’ll probably enjoy my Enchanted Sleep series, on living with ME/CFS, a little bit more.
Thank you to everyone who will watch it and share it. And a huge thank you to everyone who helped work on this magnificent documentary. I’m sure it was utter hell at times, trying to make a movie while having ME, but the results are brilliant. Thank you for validating our experiences.
It’s time for all those end-of-the-year blog posts! I admit, I kind of like this tradition. It’s a nice way to look back on things from a larger perspective. And I have a brand new DreamWorld image featuring Travis Weinand for those who want to just scroll to the bottom 🙂
2015 was a… challenging year, to say the least. And it turns out I’m starting it with a fresh, new cold and fever. It has been the worst year I’ve had, ME-wise, so far. It didn’t help that the year began with a crunched-for-time move of houses which literally took me several months to recover from. Medication changes gave me months of terrible headaches and migraines, which also meant that this year was the least photographically productive year I’ve had yet also. Between feeling terrible physically and not having nearly as much access to my art therapy as I wanted, it was a very depressing, frustrating and emotionally trying year as well. All said, I’m happy to leave 2015 behind me and have set my intentions to have a much more fulfilling 2016.
There was some drama in the larger world of ME as well. The US officially changed its name from the very belittling “Chronic Fatigue Syndrome” to the vague and incredibly widely-defined “Systemic Exertion Intolerance Disease.” Most patients and advocates were very unhappy about this and there was a big backlash, which the powers-that-be mostly ignored, as is their usual method of dealing with us. I’m still calling it ME, which is what most of us wanted it to be changed to.
I officially started a series dealing with mental health issues; Eternal Storms. It seeks to help break down the stigma associated with these illnesses and show sufferers how they are not alone.
One of the first models I ever worked with, Dedeker Winston, who has continued modeling for me over the five years we’ve known each other, despite me forcing her to wake up early, pose laying in cold, slimy, creeks, regularly get naked in forests and once helping me discover what stinging nettles look like when I accidentally had her pose nude in a patch of them, left for an extended time abroad. She is having a wonderful, life-expanding time and I’m able to keep in touch and follow her journey online and through social media and texts. I was sad to see her leave, but glad that we’d gotten in as much shooting as we did before she left, such as the Pink Mother for DreamWorld. Speaking unselfishly though, I’m really happy she had this chance to do so much traveling and is having such an incredible time! But I won’t be sad when I have the chance to photograph her again 🙂
My dear friend Danica gave me a priceless chance to work with an incredible, stunning, cream-colored Gypsy Vanner stallion named Booger. As soon as I discovered she was horse-sitting him, I began planning a shoot with Katie Johnson and him together, utilizing him in every way I could think of. I have a LOT of his shots still on my hard drive waiting to be edited, but I did at least complete one image from that magical shoot!
I was accepted into the online art gallery A Gallery, and also participated in a group show over the summer at the Creative Arts Group.
The summer show at the Creative Arts Group Gallery in Sierra Madre. This is how I want my work to be displayed, finished works alongside actual props and costumes.
I FINALLY finished editing an image I started in 2013.
I was able to attend another screening of The Last Unicorn, which was absolutely delightful! I dressed up as Amalthea and made a taco purse (get your own here!), which I think was the secret behind me winning the nightly costume contest. I was also able to introduce my dear friends and ex-neighbors Donna and John to the movie for the first time (though I’d already made them fans of Peter’s writing) and they were appropriately impressed.
Taco purse available on Etsy 🙂
At the screening as Amalthea (with purse) and back at home.
Sadly, shortly after this screening it became clear that Peter Beagle is not nearly as well as everyone had thought. This is leading to a number of problems for him and his manager/publisher Conlan Press, which I’ll leave to them to discuss. Regardless, it is sad to see him unwell and it makes the conversation I had with him at the screening last January all the more precious.
Speaking of illness, one of my favorite photographers, Ashley Lebedev, let us all know that she has struggled with a chronic illness for a long time. It was beautiful to see people’s support and desire to help her gather funds for treatment. I wish her a much better, healthier 2016 also!
The Weight of a Whistle Already Carved, @ Ashley Lebedev
I discovered the wonder that is the film Unbroken, which is now one of my go-to stories to tell myself when I need some extra motivation to get through anything difficult.
Since 2015 was so heavy with ME, migraines, frequent colds, injuries, deep ruts of depression and stress in ways I have seldom experienced it, an incredibly huge percentage of my physical energy was devoted to simply existing and not giving up. It really underscored how precious my time and energy is and how I need to devote it to things that are worthwhile. No, not just worthwhile, but things which I cannot live life without. The things are dearest and most deeply important to me.
This has given me a lot to think about as I ponder how I’ll change my management of time and energy in 2016. I will try and devote myself to not just ideas I like, but the ideas which I think are the best. The most important. I simply don’t have time to pursue anything less. This is helping to bring my artistic goals into much sharper focus. The dross will be burned away; the leftover gold burnished until it gleams.
I’m also making an effort to set aside more time for self-care activities, like short walks with Calantha or yoga when my body allows, meditation and reading for pleasure. Few things enrich my life (both my actual and imaginary worlds) as much as reading does and I need to make sure I don’t let that slip away from me by being “too busy” for it.
But of course the most important things are the relationships I have with friends and loved ones. Those will always be tended to, nurtured and cultivated as best as I can manage! I am blessed to have many, wonderful friends in my life, online and off, who get me, support me and my art and are incredibly gracious about my health problem. That’s something I should never forget to be grateful for or take for granted.
* * * * *
Now, as promised, here is my new DreamWorld image!
When I first met model and friend Travis Weinand, I was struck by how truly ethereal he looks. Not simply in pictures or when in costume, he always looks like he stepped out of a comic book, collection of mythology or possibly Middle Earth. With a quick stop-off for a dose of Viking and tattoos. Anyway, I immediately wanted him to have wings. I wasn’t sure how, but I knew he’d get them before we were done working together.
So at our next shoot, I asked him to sit in front of a dark backdrop and pose angelically. He made looking strong, gentle, loving and bad-ass all at the same time look effortless. Editing did take a while since I painted the wings myself and had to figure out exactly how I wanted these “wings made out of light” to look, but it was very worth the effort!
This character lives in DreamWorld, as you would probably guess, a centurion of sorts to DreamWorld’s Queen (whom you have not met yet, but hopefully you will soon). He leads the Queen’s army, the Glorious Guard, but he’s more than just a devoted servant. Part bodyguard, part lieutenant, part enforcer, part adviser, he is a dazzling embodiment of good.
The title of this image comes from one of my favorite poems of George Gordon Lord Byron, All For Love. In it, Byron discusses love being the greatest glory one can receive, far greater than wreaths, trophies or other symbols of glory:
O Fame! if I e’er took delight in thy praises, ‘Twas less for the sake of thy high-sounding phrases, Than to see the bright eyes of the dear one discover She thought that I was not unworthy to love her. There chiefly I sought thee, there only I found thee; Her glance was the best of the rays that surround thee; When it sparkled o’er aught that was bright in my story, I knew it was love, and I felt it was glory.
That last line kept repeating and repeating through my head as I edited… thinking about the love he has for his Queen, those he protects and his glorious vestige, so I finally gave in and just used it as the title.
Let me start by saying that I’m sorry I can’t give you more actual details about what’s going on, but I’ve been advised to continue to keep them under wraps. Those of you who follow me on social media have already heard that I’m going through a difficult time right now. What I can tell you is that I am about to do something on the 14th which is absolutely terrifying to me and has incredible, life-altering implications. For me, Geoff and the fur-kids. And while I have lots of people (like all you dear, lovely folks reading this) who are loving and supporting me, it’s all going to come down to the words I speak and actions I take on the 14th. I will be alone at the critical moment; the pressure feels crushing.
I feel like Louis Zamperini in the POW camp holding his wooden beam. I feel like Aerin facing the giant dragon Mar. I feel like the unicorn standing up to the Red Bull. I feel like one of Leonidas’ 300. Frodo off to Mordor. Rosie and Pernicia. Lissar and her father. You get the idea.
One small, anxious girl going up against something far, far bigger than she is; ill-equipped for the job. The higher the pressure, the more my brain feels scattered and forgets important details. And it’s crucial that I remember everything, no notes allowed. The outcome of this will have a huge impact on my financial state, which is currently pitiful. I need this win.
To say this has been stressful would be a huge understatement. This sincerely feels like one of the single hardest, most frightening thing I have ever had to do. But there’s no getting around it, I HAVE to do it. And I will do my best.
The stress is causing giant waves of discord through my body, mind and soul; causing mayhem and destruction. For weeks now, every night, I either have stress dreams or I dream that I’m dying… the dying ones are the worst because, in my dream, it’s wonderful, beautiful, the most peaceful, joyful thing I’ve ever experienced. And then I wake up and remember real life and it feels like a glorious gift has been snatched from my hands while the weight of life crushes down upon me again.
Despite numerous antacids of all kinds, I’m having persistent heartburn, often in the middle of the night. My pain levels are all elevated. And as you can imagine, my sleep is suffering in quantity and quality.
I’m not writing about this to simply throw myself a pity party. I am asking for your support. If you pray, please pray for a quick and overwhelmingly successful outcome. If you do Reiki, please send as much as you can. If you light candles, please light one for me. Please send all the love, good thoughts and energy that you can spare, whatever your system of faith may or may not be. I will gladly take it all!
I am determined to win this battle. And while it traditionally takes a while to hear about the exact outcome from the fight, I am equally determined to get an overwhelmingly positive answer, right then and there. I am visualizing myself being victorious. As much as I am afraid, I am doing my best to catch myself when I start to go into a spiral of worry over what will happen if I fail. When I notice those thoughts, I actively change my vision of the future to one that I want. I don’t need to open myself up to attracting any negative energy!
One thing about all the metaphors I listed a few paragraphs ago; despite the odds, they all succeeded. Thinking about others who have overcome incredible trials is deeply comforting to me. If they could do it, I can do it too.
I can say one thing: this is not about a new turn in my health or anything else along those lines. My health is fairly crappy right now, as is usual, but I have not taken a turn for the worse… other than the spiked pain, non-stop migraines, constant tension in my whole body, wildly increased anxiety, panic attacks and depression as well as extreme exhaustion brought about by all of this. It’s stressful to the point where I don’t even want to edit or create many days, which is an almost unheard-of low for me. But these are clearly responses to the weeks and weeks of stress and worry. I don’t want you guys to worry that I’m hiding some terrible new diagnosis from you.
I know I will get through this. And I know that with Geoff, I will deal with the outcome, whatever it is. But more than that, I know I will win. I have to. Knowing that doesn’t take all my fear and anxiety away, but it does give me hope to cling to.
I feel incredibly fragile in every way, but I will battle and I will be victorious. Still, your prayers, well wishes and love would mean a great deal to me right now. I can use all the help I can get.
I promise that I will try and let you guys know exactly what’s happening just as soon as I can. I appreciate that you’re all being very understanding about that and respecting the fact that I simply can’t divulge much right now.
This self portrait felt especially appropriate for this post. It serves as a reminder and inspiration to me to keep fighting, to get up when I’m knocked down, and most of all, never give up. Thank you all so very, very much for all your support! I cannot thank you enough.
With that said, please wish me a miraculous victory as I go into this battle. Now, let me go find my suit of armor.
Something you’ll know about me if you follow me anywhere or have read any other blog entries is my deep, abiding love for Peter S. Beagle and all of his creations. Yes, he is best known for his beloved masterpiece The Last Unicorn (the same story that was made into an animated film and you probably saw as a child, not grasping its full, profound meaning). The Last Unicorn deserves every bit of praise it gets and more. It’s the most incredible story, full of wonder and love and great sorrow… and joy, despite, or because of, the sorrow. What many people don’t know is that Peter is an exceptionally prolific writer, having written more books and short stories than I can count (A Fine and Private Place is a very close second favorite to The Last Unicorn). And every single one is just as brilliant of a masterpiece as The Last Unicorn.
I actually don’t remember a time when I didn’t know the story of The Last Unicorn. As in the book, “there has never been a time without unicorns,” so there was never a time for me without The Last Unicorn. It came out the year before I was born and I grew up knowing it. My brother and I both loved it, and to this day can still quote nearly the entire thing by heart. We would make a game out of it, seeing how long we could volley the script back and forth. As I got a little older, I started reading the book, and each time I did, I discovered new levels, new depths, new nuances that I hadn’t been old enough to understand before. It’s a common misconception that Unicorn is a children’s story, simply because the movie made from it was animated. There’s nothing wrong with children reading or seeing the movie, but it is a story for grown-ups. You can’t fully appreciate the skillful, deft writing, the terrible tragedy, the glorious splendor, the tear-inducing sacrifice, the depth of the characters until you’ve experienced more of life yourself.
It doesn’t surprise me now that I look back and remember that the very first self portrait I ever took, far before I was a “photographer” or a “self portrait artist” was inspired by the book. The character of the unicorn, magically transformed unwillingly into a human girl for much of the book, taken from immortality into a body she feels dying all around her, resonated so deeply with me. I probably don’t have to draw you a very detailed map of how it relates to my experience of living in a shitty body possessed by ME. And yet the unicorn gains something which sets her apart from all the other unicorns in the world by her ordeal. She learns regret. She learns to love. She is made more full for all her suffering. It’s a hope I cling to for myself, sometimes harder than others, but one I return to again and again.
About two and a half years ago, Peter magically discovered some of my work which had been inspired by his writing (both The Last Unicorn and other stories) and his business manager, Connor Cochran, reached out to me. There is still much under wraps and it will all be revealed in time, but we began working together, which was more than a dream come true for me. Bless him, Peter is the antithesis of the saying “never meet your heroes.” Meeting Peter only me love him and his writing more. There truly are few more kind, generous and relentlessly creative people on earth. And he is this generous with everyone. At The Last Unicorn Screening Tour (which I HIGHLY recommend you attend!!) he will stay until EVERY SINGLE PERSON who would like to meet him, hug him, have him sign their book or take a photo with him is seen. Despite the often very long lines, he doesn’t make you feel rushed, he takes his time and lets you say whatever you need to say. In the moment you’re with him, you are the only person in the entire world and you have his full attention. This does mean the screenings often end in the wee hours of night, and I don’t know how they all do it, those hours would kill me, but it’s just who Peter is.
A little while after I had signed my contract with Conlan Press, Peter’s publishing house run by Connor, I gathered up my nerve and asked Connor if I could borrow Peter and photograph him as DreamWorld‘s King when they were in town for the next screening. To my joy, Connor gave me the go-ahead. This led to a nightmarish few weeks when I frantically created Peter’s incredibly elaborate costume made almost entirely out of paper (fully documented here) but the results were worth every tearful, over-tired night I had getting ready for it. No one could be DreamWorld‘s King better than Peter.
Beloved Of The Crown – Peter as the King, with Dedeker Winston and Katie Johnson as his maids.
Why am I telling you all this? Just to illustrate what an incredibly special and remarkable person Peter truly is, and how wonderful Connor and everyone at Conlan are. They put their all into every single screening. They are genuinely all wonderful people, and Peter is everything you would hope he would be and more. I’ve been fortunate enough to have attended two of them; the first time was the same day that I photographed Peter so I had no energy for dressing up myself for the show, but the second time I went as Amalthea, as seen below (which won the costume contest that night, probably because of my handmade Have A Taco Purse, which I can make for you too!). Seeing the movie in a theater never fails to bring tears to my eyes.]
At the screening as Amalthea (with purse) and back at home.
Which, in my rambling, round-about way, leads to the main thrust of this post. The tour had planned on traveling to multiple countries in Europe this year, and while the movie will still be shown and everyone will still have a fabulous time, Peter will be unable to attend due to a non-threatening health issue. Peter is ok, there’s nothing to worry about, but still… even non-threatening health issues suck. Peter hopes to be back on the road soon, but I thought that it might cheer him up if we all rallied and showed him some love. What do you say? For our beloved author who writes the stories which make us weep simultaneously from sorrow and joy? He has given SO MUCH to the world, let’s try and give even a fraction of it back to him!
What do I mean by that? Well, feel free to leave a comment here on the blog. I’ll send them on to Connor who can forward them to Peter. Feel free to leave kind words of encouragement on his Facebook page or send him an email at contact@conlanpress.com. I’m sure he will really appreciate everyone’s show of support!
And let’s face it; we owe him. For decades of wonder, joy and poignant insight. For holding up mirrors full of fantasy which still reflect ourselves back and help us make new discoveries. For every brilliant word typed, every tear shed and every heart which grew in size because of his writing. For showing us what heroes are for. For bringing us unicorns.
This will be a short post. I wanted to share with you all a short video I made for the Microbe Discovery Project, a group using crowd-sourced funding to research myalgic encephalomyelitis, otherwise known as ME. They asked for people to share their stories of ME with them by video or text, so I did just that. I always wish I could help them in more concrete ways by giving them millions of dollars, but I’ll help with what I can; being open and honest about my experience with ME and making more people aware that they exist and could use some help.
Mythic Pictures 
Shades Of Sleep: Invisible Illness Day
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Sometimes I get a little daunted when May 12th rolls around each year, wondering what new I can say about the subject. If you didn’t know, May 12th is Invisible Illness Day; a day to bring attention and awareness to illnesses and diseases which don’t manifest obvious outward symptoms for the world to see. If someone has the measles or is in a wheelchair, you can hopefully tell that just by looking at them. Diseases like fibromyalgia*, Chronic Fatigue Syndrome*, Crohn’s Disease, multiple sclerosis, mental health problems, Complex Regional Pain Syndrome7, Celiac Disease, lupus, rheumatoid arthritis, Lyme disease and the one I have, myalgic encephalomyelitis* (ME for short) are considered invisible illnesses. This is by no means a comprehensive list, just a few examples.
According to Wikipedia and the 2002 US Census Bureau, 96% of chronic illnesses are invisible. This adds in an enormous extra challenge in obtaining proper medical care and treatment as well as being misunderstood by the population in general. If people don’t know that there are quiet, private, hellish wars being fought every day by millions of people all over the world, how can we ever expect our treatment to improve, let alone find cures?
That’s why May 12th is so important. We, the sick, need people to understand, to care, to help us advocate when our treacherous bodies won’t allow us to. Awareness is the critical first step in any change happening.
Why is it so important that we treat ME? What makes our disease so special?
It can be fatal. People die from this. If not from the disease ravaging our bodies for years and decades, then it often comes by our own hands as we can no longer endure the daily torment.
No one should have to live like this. As someone who has what’s considered only a “moderate” case of ME, I can tell you it’s a living hell. Pain is nearly constant, sometimes to the point where I’m in tears and desperately wishing to die. It takes away the plans you had for a normal, fulfilling life. Careers, hobbies and passions are taken from you. You either simply cannot expend the energy on anything non-essential, you lack the basic funds to sustain most pursuits because most of us can’t work, or your brain is compromised by what we call “brain fog” and you’re unable to focus on and accomplish anything. (More on brain fog later.)
We deserve to live happy, fulfilling lives, just like everyone else. When you’re constantly in pain, always exhausted and unable to think clearly, this doesn’t leave much room for whatever kind of life you wanted for yourself. And when I say exhausted, I don’t mean that we’re tired because we didn’t sleep well the night before. On a good day for me, it’s like how other people when they have the flu. A constant, crushing weight that makes the slightest exertion a Herculean effort. On bad days all I can do is lay in bed and drag myself to the bathroom periodically. Sometimes even feeding myself is a challenge. I might have to choose between feeding my animals or myself, because I don’t have the energy for both. And of course the animals always win; they’re my responsibility.
I am mostly house-bound and I require help with the sort of tasks I used to take for granted. Forgot something at the store? No problem, just go back tomorrow! Nope, not with ME. Any time I take a trip outside my home, I have to plan at least one full day of recovering at home from it. If it’s something late at night, very noisy and extra stimulating, plan on 2-3 days at least. (But frankly, late night, noisy, stimulating activities happen EXTREMELY rarely because of the damage they cause later.) When I do gather my strength to photograph models, that is my exertion for the entire week at least.
ME is extremely isolating. You can’t just go hang out with friends. You can rarely make it to family functions. Last year, I had to miss a surprise party thrown for my own mother, something which still upsets me today. I was just too exhausted to go, and I knew that if I REALLY pushed myself and forced myself to go, I would pay for it for a very long time.
ME is vengeful god. If you violate any of its insane decrees, you WILL be punished. Probably for a long time; sometimes forever. There have been cases where someone with ME did just a little too much one day, they spent the next day in bed… and then they were never able to leave it. At the same time though, if you try and do as little as possible, your energy supply will shrink and you’ll be worse off too. Damned if you do, damned if you don’t.
Right now ME received approximately 5 million dollars a year in funding from the US government. To put that in perspective, that’s about the same amount given to researching hayfever. Male pattern baldness gets at least four times as much. HIV/AIDS, which is comparable in both frequency in the population and severity of illness, gets about 600 times that amount. I’m not saying that HIV/AIDS patients shouldn’t receive that much; I think they should! What I’m saying is that ME needs to be recognized at all levels of society and government as the deadly, hellish disease that it is and get proper funding as well.
This year I decided to do something that was a big stretch for me physically. I planned a set of self portraits (all shot at the same time) with a rather complicated makeup look for my Enchanted Sleep series on living with ME. Doing that much makeup on myself normally would have been enough exertion for one day for me, but that plus shooting the images, even with Geoff’s generous help, put me in bed for days afterward with migraines pounding my head. But I’m not sorry. It was worth it.
Oh yes, brain fog. (Which I’ve got a bit of as I’m writing this.) It’s like when you have a fever and can’t concentrate or think clearly. Sometimes it reaches new heights where people suddenly can’t spell, remember their names or understand their native language. Most days it’s more like mentally wading through a bog, at least for me. I decided I wanted to portray this visually in the images I created since it’s such an annoyance at best and terrifying at its worst. I think it will be obvious how I incorporated that element into the images.
I have the video I took of me applying the makeup as well as the finished photos to show you, but I want to issue a challenge as well! I want you: you, who are reading this right now, to #GoBlue4ME! Why blue? Because that’s our disease’s awareness ribbon color. What does “going blue” mean? There are any number of things you could do to go blue. I created a couple images that you could use as your profile photos for May 12th, or even this whole week (or more!). You are more than welcome to download them and use them however you’d like! You could dress all in blue and post a photo of yourself with the #GoBlue4ME hashtag on any of your social media accounts. You could get a bunch of blue balloons, take a photo of them and use the hashtag on them too; anything blue works!
For makeup artists, I’m issuing a special challenge. As you’ll see in my video applying my makeup, I used ONLY blue shades for this entire look. Foundation, concealer, eyeshadows, blush, mascara, EVERYTHING. I challenge you all to do the same and post your looks using the #GoBlue4ME hashtag! If you’re on YouTube and create makeup tutorial videos, this would be perfect for you. There are so many fun makeup challenges going around YouTube, Instagram and other social media sites; let’s make this the next big trend! You’ll not only be stretching yourself, you’ll be contributing to a wonderful cause and helping us raise awareness for the whole world!
I did allow myself to use shades of teal, green and purple in my look because they’re offshoots of blue and I really thought it would make for a better overall look, so feel free to do the same. And you don’t have to make the blue tie into your foundation color as well, but bonus points to you if you do. 🙂 Let’s have some fun, create gorgeous looks and help a community in need of a lot of support by coming together!
Ready to see the video and my images? Here you go! I’ll be releasing the images individually over the course of the week leading up to May 12th, but you can always find them all here.
And please, pass these around! Share the links, video and images with anyone and everyone! We have to make a lot of noise to get the change we so desperately need. You have my full permission to share far and wide!
And please, if you take up the #GoBlue4ME challenge, let me know! Of course, I can search the hashtag and see what you guys have been up to, but I’m very excited to see what you come up with!
One last note, your going blue does NOT need to happen on or before May 12th. Keep doing it as long as you’d like to! The longer we can keep the word spreading, the better.
Thank you to absolutely everyone who has and will participate in this! You are helping so many more people than you know. I thank you from the deepest wells of my heart.
Download these images and make them your profile photos for a day!
Shades of Sleep, © Sarah Allegra. A self portrait about brain fog and living with myalgic encephalomyelitis.
Shades of Dreams, © Sarah Allegra. A self portrait about brain fog and living with myalgic encephalomyelitis.
Shades of Blur, © Sarah Allegra. A self portrait about brain fog and living with myalgic encephalomyelitis.
*[There are various theories and arguments about weather ME, CFS and fibromyalgia are all the same disease or separate. You’ll find as many different opinions as there are sufferers. It is my personal belief that they’re probably all the same thing, or at least all very closely related. Some people are extremely militant about using the “correct” name; I find it more important to help people understand by using the name they’re most familiar with. I tend to use them all interchangeably depending on the situation and who I’m talking to, but if I had my druthers, I’d simply call it ME and be done with it.]
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