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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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Christmas Is Coming

I Felt It Was Glory Model: Travis Weinand © Sarah Allegra

I Felt It Was Glory
Model: © Sarah Allegra, sarahallegra.com

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.

Between Awake and Asleep Self portait © Sarah Allegra, sarahallegra.com

Between Awake and Asleep
A self portrait, © Sarah Allegra, sarahallegra.com

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.
Images from my 2017 calendar. Models: Teri Wyble and Dedeker Winston. © Sarah Allegra, sarahallegra.com

Images from my 2017 calendar. Models: Teri Wyble and Dedeker Winston. © Sarah Allegra, sarahallegra.com

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!
They Lived To See The Dawn A self portrait with Calantha, © Sarah Allegra, sarahallegra.com

They Lived To See The Dawn
A self portrait with Calantha, © Sarah Allegra, sarahallegra.com

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!

Two more images from my 2017 calendar. Model: Katie Johnson, © Sarah Allegra, sarahallegra.com

Two more images from my 2017 calendar. Model: Katie Johnson, © Sarah Allegra, sarahallegra.com

I also sell my images printed on all sorts of fun items through Red Bubble.  What kind of things?  Just about anything you could want!  Tshirts, mugs, scarves, leggins, clocks, phone and laptop skins/cases, stickers, blank greeting cards/postcards, tote bags, zippered bags… really, you name it, they probably have it!  I like Red Bubble because it gives a really wide range of prices starting just a buck or two for a sticker, so it’s workable for virtually any budget 🙂

2017 calendar, front and back. All images © Sarah Allegra, sarahallegra.com

2017 calendar, front and back. All images © Sarah Allegra, sarahallegra.com

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!

Introspective: A Photographic Quest

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!
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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.)

Concrete Walls Model: Katie Johnson© Sarah Allegra, sarahallegra.com

Concrete Walls
Model: Katie Johnson© Sarah Allegra, sarahallegra.com

 

So, there you go!  Now go have fun shopping!  🙂  If you choose to purchase anything from the places listed in this post, thank you very much!

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What Else Can I Say About ME?

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.

Living With The Tombstones

Living With The Tombstones – © Sarah Allegra. Model: Katie Johnson. An image to help raise awareness about ME/CFS and other “invisible illnesses.”

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.

Want to do more?  I can help you with that!

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! ❤

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 This is a big piece for me, not just size-wise, but for what it represents as well.
Like A Storm © Sarah Allegra - detail

Like A Storm © Sarah Allegra – detail

I shot this self portrait a week or two ago after enduring months of worse-than-usual depression.  Some was due to outside influences, bad news, being sick and other things that any normal, healthy person would feel depressed about.  But a lot of it was that irrational, heavy, demanding, life-draining depression that is clinical depression.  This is not feeling sad about things that you should feel sad about.  This is round-the-clock, punishing joylessness, sucking the beauty out of everything, leaving all around you colorless and meaningless.  This is clinical depression.

 

I’ve battled this beast since it first started manifesting in my early teens.  It took me some time before I learned that what I was feeling was an actual condition, a potentially solvable problem, not just a bad mood that hung around for years.  I’ve also tried more remedied to it that I can recount; anti-depressants, therapy, energy work, supplements, yoga, getting more exercise (before I had ME; over-doing exercise now could do me great harm), self-help books, seminars, journaling, art therapy… on and on and on.

 

And it still clings.

 

I decided to start a series specifically addressing mental illness; clinical depression and anxiety in particular, since those are the two I fight with most.  I manage them, sometimes it’s better, sometimes it’s worse.  Sometimes I want to just die.  I don’t know if it will ever go away completely, thus the series title Eternal Storms.

 

I identify with Eeyore from Winnie  the Pooh, with his constant dark cloud covering just him.  I’m sure that was subconsciously part of the inspiration for this piece.  When I’m going through a bout of depression, this is what it feels like to me.  A dark storm raging round my head, that only I see and feel.  It makes the idea of asking for help feel pointless; even if I break up this cloud, another will come.  And the social stigma of admitting you need help at all, let alone help with your mental health, makes it all the worse.  If I’m having a week where I have to talk myself into continuing to live each day, I can’t talk about it except for a few select, very trusted friends who have also been there, as well as my therapist.

 

I shot this self portrait as a way to work through the cloud I was under, yes, but more importantly, to directly address depression and its stigma.  Admitting you have or struggle with depression doesn’t make you weak or unworthy.  It doesn’t make you a bad person.  It doesn’t mean you’re not trying hard enough, eating right or getting enough exercise.  It just IS.  And society needs to learn to stop judging those who do manage to ask for help.

 

The alternative is that we suffer in silence with our tormentor.  And that can kill.

 

Joel Robison happened to put up an insightful blog about his own battle with depression recently, which was a happy coincidence.  I’m very glad for people like him who will stand with me and admit that yes, we have depression.  It may not make sense to you, you may not understand it, it might *gasp* make you uncomfortable, but that doesn’t mean it will go away.We are no less human that you.  We did not ask for this fight.  This is not an attention-seeking behavior.  This is real, this illness is out for blood.  This is just our fight.  This matters.  And it can be won.One storm at a time.

This series is dedicated to all the others who fight this battle with me every day.  You are all so strong and so brave.  Don’t let anyone ever tell you otherwise.

Like A Storm © Sarah Allegra

Like A Storm © Sarah Allegra – click on the image to see it full-sized on my site!

Like A Storm © Sarah Allegra - detail

Like A Storm © Sarah Allegra – detail

 

Like A Storm © Sarah Allegra - details

Like A Storm © Sarah Allegra – details

Like A Storm © Sarah Allegra - detail

Like A Storm © Sarah Allegra – detail

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New DreamWorld image!!  I’m always happy to have a new installment for this series!

Apprenticeship © Sarah Allegra, model Noemi Regalado - detail

Apprenticeship © Sarah Allegra, model Noemi Regalado – detail

This image is a little bit “out of order,” so to speak.  The Apprentice is, obviously, an apprentice, but to someone you haven’t met yet, although you will.  In an ideal world, I would have shown you the Apprentice’s mistress first so it made more sense why she is out collecting herbs and plants and other ingredients, but you’ll have to just trust me on this for now  🙂  Hopefully I’ll be able to show you her mistress soon, but that’s going to be a pretty complicated shoot.

This image is extra special because it features a new model for me, Noemi Regalado.  Noemi is not someone who actively pursues modeling like most of the other people I work with.  She happened across my work and sent me an email asking if she could be a part of it.  Of course I said yes!  It took us a little while to find a time to shoot (which was all my fault; I think she first wrote me right around the time of my first sinus surgery and we know how that turned out.  And it seems nothing has calmed down since then!) but eventually we got a time set that worked for us both.

In a way, I’m a little glad that we had a few months to email back and forth and get to know each other a little more before the shoot although I’m sure the wait was maddening for Noemi!  (She will probably deny this because she’s very laid-back and easy going, but still.  Waiting sucks.)  In the course of our email exchange I learned that she has had her own health battles despite only being about the same age as I am.  She is a cancer survivor, currently completely in remission, and I suspect that she will stay that way.  She is a gentle soul but I know she fought that cancer out of her body.  She also participates in mud runs, something I probably would never have had the endurance for even before ME, and since her apartment only allows very small dogs, she volunteers regularly at a German Shepherd rescue group.  Every couple weeks she goes down, takes a dog out for a nice walk, socialization and a whole lot of love.  Then she repeats the process several times.  If that’s not one of the best examples of making lemonade from lemons that you’ve heard, I don’t know what to tell you 🙂  Shelter dogs have SO MUCH up against them, even the smallest gesture of love and attention can go a long, long way toward helping that dog find his or her forever home.  And so far she has been directly responsible for at least one Shepherd finding a home with a friend of hers!  I’m sure there will be more.

As you can see, Noemi is a very cool chick!  I wanted to come up with some concepts for her which would fit with her personality and her willingness to get uncomfortable and messy for a photo.  We ended up shooting two concepts; this first one that you’ll see today, as I said, is a DreamWorld image, and the second one, which I have not yet edited, will show off her willingness to do what it takes to get the shot.  And I have to say, she was a great model!  She took direction very well and had a better knack for it than some “actual” models I’ve come across 😉

So, let me tell you a little about making Noemi’s mask/headdress for this shot!  It all started with this lovely purple mask which I found at Rite Aid, of all places, on one of my many, many trips there to pick up prescriptions.  The color really caught my eye, I thought it would compliment Noemi well and I also noticed that it was less expensive than the completely blank, white masks at the craft store!  And no built-in swirls with the blank white masks either.  So that was a pretty easy decision to buy it.

Trying on the mask for research, NOT just because it was fun :)

Trying on the mask for research, NOT just because it was fun 🙂

But of course it can’t just be a basic mask, even if it looked very pretty in its basic form.  The first thing I did was cover it with a layer of lace, which happened to be a remnant cut from my wedding dress (because, surprise!, it was too long ;)).

Mask laceAfter brushing on a layer of fabric glue, I started with a layer of EXTREMELY glittery purple paint.

It doesn't look interesting wet...

It doesn’t look interesting wet…

But it dries into a really stunning color!

But it dries into a really stunning color!

Then I did some trimming on the lace to get the edges to match those of the mask itself.

At this point, I knew I wanted to put some leaves and flowers on it, but I didn’t know much more than that.  So I dragged out my fabric stash (what you’re seeing here is what I’d been able to buy during a HUGE sale!), my glue gun and just started messing around.

mask and loose flowersI knew I wanted to extend the sides of the mask with leaves, so I started there.  Maynard helpfully modeled this part for me.

Maynard is an awesome model, even when he's not facing the camera

Maynard is an awesome model, even when he’s not facing the camera

You can also see that I’d added a bit of black ink around the eye holes, rather like eyeliner.  Just a subtle touch to help draw the viewer’s eye since there was going to be a fair bit going on.

I just played around with different colored flowers and shapes, holding them in place, tweaking things here and there and then suddenly I had a finished mask!  I hadn’t planned on giving it so much vertical volume, that just sort of evolved naturally, but I liked how it looked so I went with it.  Some costumes I have planned out in precise detail before I ever start them, but others are more free-form, like this was.  Always listen to your gut 🙂

mask four small

A mask! Photos from here out are taken in the bathroom to protect it from over-eager cats.

As I looked at it the next day, I felt like it was 95% there but it needed… something.  I didn’t know what.  I mulled it over and when I woke up the next morning I knew it: mercury silver spray paint.

Krylon’s Looking Glass spray paint is no ordinary silver paint.  It has a truly magical quality to it and I end up using it in almost every costume or prop I paint.  Just the slightest mist gives it a mysterious, magical, ethereal touch.  I try to always keep a couple cans on hand because I never know when I’ll suddenly need them.

So that morning I took the mask outside and let the paint gently kiss the mask; just enough to give it that magical feeling without taking away the beautiful colors of the paint and flowers.  In the photos below (which are a little blurry, sorry, they were taken on my phone) the top photos show details of the flowers unpainted and the bottom have had their silver wash.

Flowers with and without Looking Glass paint

Flowers with and without Looking Glass paint

I filled a basket with appropriately magical-looking items and herbs but it didn’t make it into the final image.  Oh well.  You can see just a little of the vial necklace I made full of purple stones and beads and the gorgeous amulet/brooch.  Jewel tones just loved Noemi’s beautiful skin tone!

And now I’ll let you see the completely finished image along with some detail shots!  The show trees had just started blooming in the woods and the wild queen anne’s lace was bountiful.  Both made a beautiful, more neutral backdrop against Noemi’s vividly colored mask and costume.

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Apprenticeship © Sarah Allegra, model Noemi Regalado

Apprenticeship © Sarah Allegra, model Noemi Regalado - detail

Apprenticeship © Sarah Allegra, model Noemi Regalado – detail

Apprenticeship © Sarah Allegra, model Noemi Regalado - detail

Apprenticeship © Sarah Allegra, model Noemi Regalado – detail

Thanks to Noemi for being so patient through all this!  I’m very glad to have made a new friend though all this 🙂  And I’m very happy with how this turned out!  You’ll all just have to wait a little while longer to see the image where Noemi really proved her devotion to the finished image 😉

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I promised you photos from my opening reception at the Creative Arts Group opening reception and here they are!

Of course I got all caught up experiencing the show to remember to take photos once it really got going, so mostly I have photos of the exhibit itself and a few from Geoff.

IMG_1473IMG_1474We had a pretty good turn-out!  And luckily for my anxiety, I knew most of the people who came fairly well which made it much easier on me.

IMG_1475IMG_1476People seemed to really enjoy getting to see the props and costumes up close and realize they really weren’t Photoshopped.  Not, of course, that there’s anything wrong with using Photoshop, I certainly do, frequently and heavily to make the impossible possible, but when I’ve put month and months of work into something, it’s an important distinction.

IMG_1480

Me with the dress and flower footprints from Spring’s Awakening – and my awesome, retro-deer-print dress

IMG_1373IMG_1477

Antlers from Where Black Stars Rise

Antlers from Where Black Stars Rise

Chest piece from Where Black Stars Rise

Chest piece from Where Black Stars Rise

Our old neighbors, Donna and John, showed up, which was really lovely.  It’s been hard on everyone to have suddenly gone from seeing each other every day to every few weeks, so it was great to be able to have them hang out for a little while and gossip about really important topics like Game of Thrones.

John, me and Donna

John, me and Donna

I was completely exhausted afterward and crashed very hard the next day… and a couple after that too.  But it was good to have had the reception and I’m glad it happened, even if I paid for it later.

IMG_1488Maynard crawled up on me after I got home and laid on my chest, giving me sweet little kitty kisses.  I took a photo because he was being so adorable and also to document the fact that I DO still know how to apply makeup, I just don’t bother expending energy on it regularly 😉  I have better things to do with the precious little I have.

It’s been a little while since I posted a new image, and part of that is because I’ve been hard at work getting ready for the show, then recovering, then I was helping Geoff with a really fantastic short film he made.  Are you a sci fi fan?  Like stories about dystopian futures?  Give it a view!  It’s a really cool, original concept which I’m proud to have my name attached to.

Frontiers posterNow… on to my new image!

My good friend Danica is a horse trainer and I discovered she had a cream-colored gypsy vanner stallion named Booger staying with her for a few weeks.  Booger was only going to be with her for a short time, so I quickly rallied Katie and got a shoot scheduled.  Booger perfectly fit a series of images I’ve been wanting to shoot for years, but they required not only a horse, but an extremely specific-looking horse.  Luckily, Booger fit the bill!

Those images will be coming later.  For the mean time, I wanted to make as much use of him as possible, so we shot quite a few concepts.  This one was Katie’s idea, sort of a companion piece to this self portrait I shot, also on a horse (Freddie, who is extremely laid-back) belonging to Danica:

Where Dreams And Shadows Lie © Sarah Allegra

Where Dreams And Shadows Lie © Sarah Allegra

Booger did such a good job!  He’s only about two, a baby in horse years, and he had never modeled before.  It required a lot of fast thinking, re-adjusting and everyone being on their toes, but we got some really wonderful shots!  This is just the first of several which you’ll see; the others will be released as I get to them.

Thanks to Katie and Danica (who really did an incredible job of wrangling an untrained young stallion into doing the weird things we were asking of him), Booger’s owner for letting us photograph him, and especially to Booger for being such a great first-time model!  Many smooches and apples to you, my friend 🙂

Safely Through The Shadows © Sarah Allegra, model - Katie Johnson

Safely Through The Shadows © Sarah Allegra, model – Katie Johnson

Safely Through The Shadows © Sarah Allegra, model - Katie Johnson - detail

Safely Through The Shadows © Sarah Allegra, model – Katie Johnson – detail

Safely Through The Shadows © Sarah Allegra, model - Katie Johnson - detail

Safely Through The Shadows © Sarah Allegra, model – Katie Johnson – detail

Safely Through The Shadows © Sarah Allegra, model - Katie Johnson - detail.  Look at those feathery legs!!  :D

Safely Through The Shadows © Sarah Allegra, model – Katie Johnson – detail

Safely Through The Shadows © Sarah Allegra, model - Katie Johnson - detail

Safely Through The Shadows © Sarah Allegra, model – Katie Johnson – detail

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