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Shades Of Sleep: Invisible Illness Day

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.

Shades Trio

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!

ME avatar 1

ME avatar 2

Shades of Sleep

Shades of Sleep, © Sarah Allegra.  A self portrait about brain fog and living with myalgic encephalomyelitis.

Shaed of Dreams

Shades of Dreams, © Sarah Allegra.  A self portrait about brain fog and living with myalgic encephalomyelitis.

Shades of Blur

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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Rapeseed's Harvest

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!

Rapeseed's Harvest

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?

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