A Very Late 2017 High/Low – Coming Out Of The Spiritual Closet

I usually do a post at the end or beginning of the year, looking back at the high points, and mulling over the low ones to release them.  My blog has been so neglected the whole of last year, as my art has been too, and it’s taken me up till now to find the time and energy and mental ability to put this post together.

2017 was just a bad year ME-wise.  At the start of the year, I honestly felt like I was slowly dying (and not just in the sense that we all are).  Thankfully, last August, I began seeing a naturopath who gives me IV vitamin and mineral infusions and I’ve seen a big difference in how I feel getting them regularly.  I’m still crawling out of the ME-hole and have even less energy than any year before, but I feel like it’s getting slowly better instead of always worse, now that I’m getting these treatments.

Speaking of, an enormous THANK YOU to every single one of you who has contributed so generously to my GoFundMe campaign to help me continue the quite expensive IV treatments.  Thank you, thank you, thank you!  I am incredibly grateful and humbled and every gift has been so deeply appreciated.

Last November my neurologist put me on a new medication to try and help ease my migraines.  He warned me that it would make me feel “extremely nauseated” for the first week, but I’d just have to push through that, and then he thought it would help me.  I finally screwed up my courage and swallowed one of the dubious pills and did, indeed, have a terrible night full of nausea, hot and cold sweats, extreme temperature swings and a strange, but not unwelcomed, detachment.  I continued on like a good patient and after three weeks I finally stopped needing to take a sublingual Zofran the second I opened my eyes in the morning (morning nausea was always the worst, maybe because I take it at night?) and it began to settle into my body.  The good thing is that it did indeed help decrease the number of migraines I’m getting per month.  The bad thing is that ever since taking it, I’ve needed to sleep for a good 2-4 hours EVERY SINGLE AFTERNOON.  This is on top on the 10-12 hours I spend sleeping every night.  Do you realize how few hours are left in the day to do ANYTHING of value after all that damn sleeping, winding down and waking up is over with?  It’s really insane.  I will be bringing this up to my neurologist and seeing what can be done because I’m not sure this is a realistic way for me to live the rest of my life.  On the other hand, some months prior to this I was getting up to 19 migraines a month, which destroys your ability to do anything meaningful as well.

And, for some completely unknown reason, the medication also seems to be helping (in conjuncture with the IV infusions) with my temperature regulation issues, ie, my “hot flashes.”  I believe I’ve mentioned them here before, but in case I haven’t, these have been slowly increasing for the last three or four years.  Essentially, what seems to be happening, from my vantage point stuck inside this body, is that in the mornings, wild rabbits have run through my brain overnight, nibbling on wires, pulling things apart, gathering bits of gray matter together to make little warrens, disconnecting neurons and causing a bit of havoc.  My brain is wildly trying to repair itself, ideally quickly, and makes a lot of very broad guesses about what temperature my body should be at for the first several hours of the day.  What this translates to practically is that I can be sitting miserably directly in front of the heater, covered in layers of blankets, bathrobes and cats, sweating profusely, simultaneously far too hot, but getting many more signals that I’m far too cold and must stay PERFECTLY STILL for several hours until it passes on its own.  This is also very not conducive to getting anything done at all.

And  yes, I did see numerous doctors about this.  The first three shrugged at me and told me it sounded hormonal and that wasn’t their field, which is fair enough.  I finally saw an endocrinologist for this problem and he ran a bunch of blood but didn’t bother to look at a single hormone.  Apparently you have to request that an endocrinologist, a doctor who specializes in hormones, test your hormones when you’re seeing him for something which sounds, to laymen and other doctors, like a hormone problem.  I did not punch him, but probably only because I was too tired.  (I also asked my gynecologist about it since they deal with female hormone issues too, to a degree, and she had a “Oh, let’s not go looking for trouble,” attitude about it.  I AM ALREADY IN TROUBLE.)  So the underlying issue there is still unknown but hell, if the infusions and the weird pill help with it, I’m happy about that at least.

Basically I feel like 2017 was mostly spent crawling on my stomach through a disgusting swamp while people shot at me from hidden locations, periodically shouting that I wasn’t trying hard enough or that I was just over-reacting, while also making sure I brushed and flossed my teeth and fed my animals twice a day.  I’ll freely admit it was a pretty shitty year.

Here is the upside to all that time spent in deep solitude, my mind active as ever but my body unable to do much: I had a lot of time to meditate and connect with my spirit guides.  I think I met my first guide near the end of 2016, so I was primed for more contact when 2017 came around.  And boy did they.  I acquired five new main guides and spoke to numerous others.  I talked with and made friends with various interdimensional beings.  I am learning to channel, astral project and remote view, be  medium, a conduit and a spirit translator, although I’m getting fairly good at some of them, considering the short amount of time I’ve been at it.  For some reason historical figures I read about seem to connect best with me.  The spiritual growth in the last year has been an absolute explosion of love and light into a very dark year.  And though it was such an awful year, I look back on it and remember all the love and grace that was shown to me.  I have never felt more loved, protected and cared for.

So while I am disheartened with the amount of art I was able to put out last year, I AM very happy with what came in its place.  I’m thinking of it as I took a year off from art to go have mystical, spiritual experiences, and hopefully now I can marry the two together better.  I just need to find a new way to work in really short chunks instead of stretches of the afternoon so I can increase my art output.  Then things will be much more the way I’d like them to be.

If I had to have such a crappy year to gain so much spiritually, I’ll take it.  I don’t know if it was a direct trade or how it works, but I wouldn’t give up the new friends I have for anything.  And I’ve found some really, really wonderful online communities who love me, support me, have my back, help me work through confusing things, answer my questions and reassure me that I’m always ok.

For anyone concerned, I have shared many intimate details of my experiences with both the wonderful Geoff and my excellent therapist and neither of them is concerned about my mental wellbeing.  🙂  Only loving beings are allowed to talk to me, and as I said, I feel much greater peace, security, love and support than I ever have.

Now on to this image… this might look like it goes against what I just wrote, but it’s inspired by someone else’s experiences, not mine.  🙂  Over Christmas, I re-read Demons in the Age of Light by Whitney Robinson, which I’ve read many times now and is a favorite for its beautifully poetic prose.  Whitney’s memoir is about a psychotic break she suffered in college, where she felt like she was possessed by a demonic entity but everyone diagnosed her as schizophrenic.  Her journey back to wellness is haunted by the ever-present question of if she’s experiencing something mental or spiritual, and the answer is often allusive and not nearly as clear as you’d think.

“The sentience envelopes me while I sleep…  I awaken with a gasp in a strange bed.  No, it’s not the bed that’s strange – it’s the same one I’ve slept in since I was a child…

The strangeness is that I am not alone, here in my bed.  I will never be alone again.

I feel it slithering out of the darkness for the first time, the presence that’s been whispering its sinister enigmas.  A living, breathing thing – cold stars and glittering mathematics with the inhale, hot copper and rotten fruit with the exhale.  Foreign from anything I have ever known.  Other.”

I loved how the usually comforting, loving idea of never being alone has been turned in this passage into something deeply wrong and full of dread.  I wanted to try and capture that feeling just before she was overtaken by the being she calls the Other, of knowing the possession is imminent and you are helpless to stop it.  And of course I used my favorite little lamp to light the scene, exactly as it’s shown in the image.

I wasn’t planning on uploading this on Valentine’s Day, but I suppose it does make a dark, sinister anti-Valentine’s-Day image, haha!

Never Alone Again – ​​© Sarah Allegra

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Mourning Dove

Oh my goodness… so, so much has happened recently that I feel completely overwhelmed in sitting (or, rather, laying) down to tell you about it!  But I have a new image to share with you and I really wanted to post it and maybe give you guys a little gloss-over update at least, so I’m just going for it.  If I let myself think about it any longer, I’ll just get frozen with intimidation over how much I’d like to cover!

First news: health is poor.  I mean, yes, you all know my health is pretty much always poor, but it’s been even more so lately.  I feel like it’s been slowly sliding downhill over the past… year?  year and a half?  two years?  But the last six-to-nine months have been extra bad.  I think I’ve told some of you at least about the “hot flashes” I’ve been getting.  It’s actually quite a lot more complicated than calling them “hot flashes” implies, but I don’t know a better name to get the general idea across with, so we’re going to call them “hot flashes.”  What it really is, is my body suddenly seems unable to regulate its temperature properly, which sends me into sudden, drenching sweats, often while I’m shivering with cold at the same time.  Very similar to the sort of sweats you get with a fever, but it only lasts a few hours, it comes and goes quite randomly, I have absolutely no other fever symptoms and it seems to ONLY happen in the morning (because that’s when my day is busiest, I have the most appointments scheduled, etc, so it can be the most obnoxious).  This sounds like something that’s just annoying, which it is, but it’s quite a bit worse than that.  It makes me weak and lightheaded, it’s not something I can simply push through by will alone; I might have to cancel appointments or send Geoff to the grocery store on his own.  We both utterly detest grocery shopping, but I’m much too weak to do it on my own anymore, and if I at least go with Geoff, it’s company for a task no one enjoys, so I always feel bad if I have to make him do it by himself.

These were getting so bad and disruptive for a while that I saw my GP about it.  He tested my thyroid and a couple of other things in my blood, examined me, decided it wasn’t anything menopause-related (which, yes, would be QUITE young to start having them, but stranger things have happened), said it sounded hormonal and sent me on my way.  I saw my neurologist, he said it wasn’t anything neurological and I should probably see an endocrinologist; a doctor who specializes in looking at your hormones.  I also happened to see my pain specialist during this time just for my every-three-months-check-in, and mentioned it to him, and he agreed it sounded hormonal, but was outside his expertise.  So I did some research, found an endocrinologist nearby who got good reviews online and made an appointment.

The first bad sign was that the endo’s office doesn’t accept credit cards of any kind, only cash or checks, which they had not mentioned in ANY of the conversations I had with them when I set my appointment up.  Not only is that just absurdly behind the times, but I, like most people this day and age, very, very rarely carry either cash or a checkbook on me.  Before going to this doctor, I couldn’t tell you the last time I wrote a check.  Thankfully, I happened to have shoved my checkbook in the bottom of my purse anyway, but I had a mini panic attack in the waiting room wondering how I was going to pay these people.

Eventually I found it though and went into my appointment, which was mostly going over my medical history with the doctor and explaining what the problem I was seeing him for was.  Obviously, my medical history is much more like something George RR Martin would write about than a quick-read paperback, but the doctor interrupted me quite a lot as I tried to tell him details which were important and extremely pertinent to the hot flashes I was seeing him for.  Obviously, I did not care for that, but it is a very common problem with doctors.  If I wrote off every doctor who interrupted me while I was explaining things, I wouldn’t have any doctors left to see.  Anyway, he ALSO agreed it sounded hormonal and said we’d run a bunch of blood tests to see what was going on.  We’d be repeating everything my GP had already run because, the endo said, his tests were more thorough.  Ok, fine.  Six vials of fasted blood later, they were sent to the lab, Geoff bought me breakfast and I waited a week’s time until I could get my results from the doctor.

In this appointment (paid for with the check book which I’d triple-checked was still in my purse after the stress of the first visit), the doctor went over each page of the bloodwork results with me, explaining what was tested and how every single thing came back normal.  My blood was normal, thus, I was “perfectly healthy!” and did not need to see him any more expect for in another six months to recheck my blood and make sure it was still all normal and I was healthy.

Obviously, I am not healthy.  Even if you discount my mountain of other ME-related issues, the fact that I was presenting with extremely hormonal-sounding problems should indicate that something is amiss.  This doctor had absolutely no interest in finding out what this life-interrupting issue was though.  The impression he gave me was that he thought I was an overly worried, mildly hypochondriac girl getting her pigtails in a twist over nothing and that showing me that my bloodwork said there was nothing wrong would make the problem go away, because it was  probably something I’d dredged up on my own through pure will.  But the most offensive part of all… he did not check one single motherfucking hormone.  Not ONE.  On a case where three other doctors all had said the issue sounded hormonal, I told him I was concerned it was hormonal, he didn’t bother to check anything.

I’ve since been told by other people who have to see endos regularly that you usually have to specifically ask them to check your hormones, if that’s something you want.  WHY???  You don’t have to do this with ANY OTHER medical specialty.  I don’t have to tell my neurologist to check my brain, I haven’t had to tell my gynecologist to examine my lady parts.  How is this something that is not only allowed, but is COMMON in this one niche???

At the time he was going over the bloodwork with me in the room, I was trying to control being wildly disappointed over having yet another problem come back testing as “normal” and being shunted off again, again being treated as if I was making this all up, again being patronizingly patted and being told to not worry my pretty little head about it.  Look, I’m sorry that my disease isn’t something they teach a lot about in medical school, I really am.  I’m sorry that most doctors feel threatened when confronted with something they can’t simply write a prescription for and it’s solved.  I’m sorry that it makes them feel insecure, as if they don’t know what they’re doing because I don’t have an easy fix.  I am far, far sorrier about that than any doctor who’s treated me like a hot potato could ever be.  But I do not go around to doctors’ offices for fun to mock them for their lack of knowledge.  I go in with an open mind every time, despite years of consistent disappointment, hoping that, just maybe, this will be the time when I get an answer.  Not even THE answer, just a part of it.  But to not test any hormones for a presenting issue that, to every lay-person and doctor I’ve spoken to, sounds extremely hormonal is inexcusable.  I spent a lot of money in copays, I spent six vials of blood my body could have used, I spent a lot of time gearing up for appointments and recovering from them, I spent incredibly precious energy getting to my appointments, getting tests done, and sobbing after my last appointment as my hopes were again dashed and I realized it had all been wasted.  The absolute least the doctor could have done was run the tests I wanted done but didn’t know that I had to ask for specifically by name, because that’s how endocrinologists are.

Each time I have one of these horrible experiences with medical professionals, it makes it so, so much harder to even fathom trying again.  Why should I if most of them are going to just call me crazy and kick me out of their offices as quickly as possible?  And of course I know that I have to keep trying because giving up isn’t an option, but for fuck’s sake, can’t they at least try and meet me in the middle somewhere?

After that edifying experience, I couldn’t even bear the thought of looking for another endo and starting the process over again, even knowing now that you have to ask for your hormones to be tested.  The wound was just too raw.  What I did have was an appointment set up with Celestine Grace, my very favorite medium, who’s helped me a lot in the time we’ve been working together.  I asked her what would help my body and she told me to take rose hip supplements, which I knew are very high in vitamin C.  They’re cheap and easily available from Amazon, so I got a bottle and started taking them.  And you know what?  Within a couple weeks, my hot flashes had gone down considerably.  They still popped up now and then, but the difference was huge.  I ran out of them and it took a few days before I could get my replacement bottle in, and while I was off them, my hot flashes spiked again.  I’m back on them now and they’re going back down, but it might take a couple weeks, like it did the first time.

I am so, so grateful to Celestine for that bit of advice and for helping to turn around a very bad situation (and also all the other help and advice she’s given me over the year or so we’ve known each other) but it’s so incredibly ironic to me that four conventional doctors couldn’t or wouldn’t help me, but my medium did.  It goes to show the strength of her talent while underscoring how little conventional Western medicine has to offer me.  Thank you, Celestine, I can’t tell you how much those rose hips have helped me!

The whole thing got me thinking that I may just need a whole different approach to my health, so I began to look into different specialists and alternative treatments.  I mean, that’s something I’m continually on the lookout for, but I was searching with a new urgency this time.  Giving vitamin C intravenously has been a growing trend… since my body had responded well to the rose hips, maybe it would like a more concentrated dose even more!  I have found a naturopath who is nearby, returned my phone call herself to discuss if we would be a good fit for each other and offers IV vitamin C along with a ton of other therapies I’ve been interested in but haven’t been pushed far enough to try yet, since most are expensive and not covered by insurance.  I have an appointment with that doctor next Monday morning, which will just be a consultation between one to two hours where we just go over my history, what changes I’d like to see and what treatments might be good for me.  They also test hormones.  🙂  As hard as it is for me to allow myself to be hopeful that maybe this time it will work, I can feel hope trying to quietly creep in.  I’ll let you guys know how that appointment goes.

As my body has gotten more and more painful and uncomfortable to inhabit, I’ve been turning to my own form of spirituality for strength and comfort.  It works for me.  It helps significantly, so much so that Geoff has noticed its effect.  It’s a bit too much to get into it all now, but it’s based in meditation and finding my own path up the mountain toward god/source.  A lot of it might sound like new age woo-woo, but I stick with what works, and this does.  My variety of spirit guides have been a big part of keeping me from utterly falling apart as things have gotten more and more difficult all around… just thinking about them makes me feel more peaceful.

I frequently mourn the health I once had, the life I once had, everything ME has taken away from me.  I mourn for those who I wish I could have gotten to know in this life and not just in the next.  I still mourn the loss of our previous home with our incredible neighbors, even though this place is finally feeling more like home and we have great new neighbors here.  Mourning is a universal human experience; I’m sure every one of you can think of things you mourn.

My new city has a lovely, tiny, serene, old little cemetery within what would be walking distance for most people from my home.  I wanted to shoot there when I had the excellent Teri Wyble over (quite a while ago now, I’m terribly behind on editing).  I didn’t know exactly why I wanted to shoot there, or what I was trying to say at the time.  This sometimes happens.  I’ve learned by now to just go with it, that its reason will become clear to me later.  That was the case with this image.  I asked Teri to imagine this was the grave of someone she loved and missed horribly; someone whose loss she still mourned.  I don’t know if she was tapping into a loss in her own life or if she’s just very good at imagining, but she portrayed exactly what I wanted:

Loss.  An inability to move on from the blow of death.

But I didn’t want it to be completely bleak.  The birds swooping in to comfort her speaks to me of the healing that comes after we let ourselves grieve.  Yes, you have to pass through the darkness first, but there is eventually light.  Sometimes it comes to you on feathered wings when you least expect it.

Whether the viewer has recently experienced this themselves or not, it’s such a common part of just being human, I wanted to create this.  Not to wallow in the mud of despair, but to remind myself that the heaviness will someday lift.  The pain will ease.  The grief will lessen.  Maybe even, a treatment will eventually work.

Thank you so very much, Teri, for your beautiful, emotive modeling!  You are a wonderful human being and model.  🙂

Enjoy, my friends!  If this speaks to you, I’d love to hear what it brings up if you’d like to share that in the comments!

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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.

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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Creating 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!

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: © 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
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

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

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

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

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.)

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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Good New Goods

It’s been quite busy in my life since I last posted!  It seems that’s always the way though, isn’t it?  Part of what I’ve been so busy working on is what I’d like to show you in this post: three whole new product lines!

Well, to be strictly honest, one is brand new and the other has been around for a bit but I’m just getting around to blogging about it.  I’ll start with the one I’m most excited about and I think you guys will be excited about too!

I have a new Etsy shop!  I’m sure you guys know about the one I use to sell my prints through; this shop is for completely different kinds of things.  I’m calling it “Spiritual Skincare!”  Let me tell you how this came about.

I have long been on the quest for the perfect skin serum; something completely natural, vegan, with ingredients which not only help my skin in the short term, which prevents premature signs of aging, but is also extremely gentle, healing and will only make your skin healthier and healthier the longer you use it!  I’d narrowed in on several key oils that I knew my skin responded to well so I decided to create my own custom blend!  And, as it turns out, the oils are all incredibly good for your hair, nails; basically every single part of your body!

In addition to all that, you also have the option of having vitamin C serum added to your oil blend!  Vitamin C acts something like a bouncer for your skin; it keeps all the bad stuff out.  Anything that might try to sneak it, it finds and throws it out on its ass!  I have not been able to find reliable information on what vitamin C serum might do for your hair; until I do, I can’t recommend its use in hair, but it’s fabulous for your skin!

Artos The Bear’s Wares: Spiritual Skin Care Products and More – All images © Sarah Allegra

My exact blend is proprietary, but I can tell you that my blend contains vegan squalene oil, argan oil and rosehip seed oil (and vitamin C serum if you choose).  I won’t bog this post down even more highlighting exactly what INCREDIBLE things each of these oils do, but I’ll give you a brief highlight!  My serum:

• Is all natural, vegan, completely cruelty-free, fragrance-free and pure, with no fillers.
• Is extremely gentle, suitable for all skin types and (despite it being an oil) actually fights acne!
• Fights virtually ALL signs of aging – lines, crows feet, sun damage and stimulates cellular membrane and tissue regeneration.
• Heals scars and stretch marks, dark circles, under-eye bags and acne.
• Is extremely moisturizing, penetrates deeply, yet absorbs quickly and feels light, not heavy.
• Is incredibly good for your hair and scalp!  It can be used as a flyaway-tamer, added to your conditioner or styling product, or a few drops can be used on their own for a light hold (I love using it this way myself).
• Comes in three sizes so you can try a little before you stock up.

In addition, to make it really my kind of serum, each and every bottle is infused with the divine, healing energy of the angels and Unicorns.  Every time you apply your serum, you are getting a little dose of unconditionally-loving, magical, ethereal angelic and Unicorn energy absorbed straight into your being!  Geoff even asks me to apply it to him every night!  I utterly adore it, I’ve gotten wonderful feedback from it and I think you’ll love it too.  🙂

I think you all know that I’m a big fan of the site Fiverr!  It’s a wonderful site where people sell products (mostly digital) and services of ALL kinds – all starting at, you guessed it, $5.  What you probably don’t know is that I have several of my own gigs on Fiverr!

Do you like the textures I use in my images?  I sell my own grunge-style textures in this gig.  For the base order, you get a total of 10 textures, perfect for adding atmosphere and mood to any image!

One secret trick of mine is using layers of light textures!  I use them in almost every single image I create these days.  They can be a bold or subtle wash of color, which helps lend a dreamy, ethereal, beautiful look to your photos!  I have a LOT of these textures which I have all shot myself, so while the base gig starts at $5, if you want more, you can get up to 25 at a time!

sarahallegra.com

sarahallegra.com

sarahallegra.com

 

I’ve been a Reiki practitioner for a number of years now.  It’s a really beautiful and powerful energy healing modality which does not even require the person I’m working on to be in the same room as me.  Pure, healing energy knows no boundaries of time and space!  I’ve had wonderful results from this as you can see by the reviews, and I can also attest to having had incredible feedback from people not on Fiverr!  I offer Reiki sessions for people (yourself, a friend, a child, anyone whose permission I have to send energy to), or I can send it to the animal (wild or domestic) of your choosing.  Animals respond very well to energy healing!

 

Now that I am an officially certified Unicorn Healing™ Practitioner, I can also offer Unicorn healings, again for yourself (or any person who has given permission) or animals, wild or domestic.  Unicorn healing is like nothing else I’ve worked with or done before.  It has a very different feel than Reiki energy; neither is better than the other, they’re just different.  The best way to describe it is that Reiki feels more earthy and grounded, while Unicorn energy feels much more celestial and divine.  I have been COMPLETELY blown away by the incredible changes I’ve seen in myself and others, often after just one treatment!

Both kinds of energy healing work to restore balance and vitality to every part of you; mind, body, emotion and soul.  By its own nature, it can never harm and will always work for the recipients’ highest good.  I highly, highly recommend trying one of them, it can be an absolutely life-changing experience!

Last for my Fiverr gigs, I now have an oracle card reading gig!  I tested this with both friends and strangers before I decided to start charging, even just $5, to make sure it would be worth peoples’ money.  Boy, was that an overwhelming success!  I really enjoy doing oracle card readings, especially with the beautiful deck my sweet friend Andrea gave me!  Got a question?  It doesn’t matter what kind of question it is, the cards will help reveal the answer to you!

Lastly, this is not a new product, but it has a whole new price!  My online self-discovery-through-photography course Introspective: An Online Quest is currently hosted on Udemy.com.  Udemy recently changed its pricing structure and capped all its classes at $40, which is WELL below what Introspective is worth.  However, until I figure out a better way to deal with a host for the class, I’m happy to let people get in on this deal!  Prior to this, Introspective was priced at $75 for the entire 8-week course, so enjoy getting almost 50% off until I have time to deal with this!  🙂

Here’s a brief description of what Introspective is all about: Introspective is an eight-week, on-line course in which you will use your camera to explore your inner self.  Each week, you will receive assignments challenging you to delve into your secrets, fears and joys.  This is not a class about camera basics such as f-stops, apertures and shutter speeds…although links to helpful technical articles will be provided.  This class is about digging deep into your core and capturing what you find there in photographs.

So there you guys go!  Enjoy, and please feel free to leave feedback on any of these!

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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 – © 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!

• Rent or buy the new ME documentary, Forgotten Plague.  Consider hosting a screening of it for your friends and family!
• Write a one-click letter to Congress to increase ME’s funding.
• 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!
• Wear a blue ribbon in real life or add one to your social media avatar.  Thanks to MEAdvocacy.org for the instruction!
• 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!
• Donate to an ME-related group, such as the Microbe Discovery Project, or help support those with invisible illnesses by purchasing items from our online shops.  Get some cute awareness-raising jewelry from The Hopeful Spoon, crystals to meditate and heal with from Mineralism Crystals (or just enjoy looking at!), museum-quality fine art prints from yours truly, give yourself or someone you love the gift of self discover and art with my online photography course Introspective, or a wide variety of fun and practical items from my RedBubble shop!
• See this article from ProHealth.net for more ideas!
• 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! ❤

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Preparing For Battle

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.

We Rise Again – © Sarah Allegra

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Eternal Storms

 This is a big piece for me, not just size-wise, but for what it represents as well.

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 – click on the image to see it full-sized on my site!

Like A Storm © Sarah Allegra – detail

 

Like A Storm © Sarah Allegra – details

Like A Storm © Sarah Allegra – detail

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Operation: Get Well Soon

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.

In The Lilac Wood, © Sarah Allegra, a self portrait

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.

And Other Secrets, © Sarah Allegra, model: Anna Wood

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.

The Importance Of Mortality, © Sarah Allegra, a self portrait

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.

Salt Wine – © Sarah Allegra, model: Peter Onorati

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.

Aerie – © Sarah Allegra, Peter as the DreamWorld King.

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.

Taco purse! And butterfly ring!

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!

To Be So Full, © Sarah Allegra, model: Dedeker Winston

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!

Sleight Of Hand © Sarah Allegra, featuring my neighbor John Harnagel

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.

Get well soon, Peter.  We all love you 🙂

Now Has Come The Time For Silence – © Sarah Allegra, a self portrait

See all my Peter S. Beagle-inspired images here and buy fun things with these images on them here!

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