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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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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Square Holes and Human-Shaped Pegs

Square Hole: a self portrait © Sarah Allegra

I’m sure everyone reading this has had times when they felt like the often cited square peg in a round hole.  It’s a pretty universal human experience.  And, of course, we shouldn’t all fit neatly into every hole society expects of us.  If we did, there would be no one to rock the boat, to bring about desperately-needed change, no inspirational leaders, no one going against the flow and showing us we can do the same.

We need those people who obviously, obtusely, refuse to contort themselves into whatever-shaped hole is expected of them.  We need our spiritual leaders, those who bring about social reform, who call out those in power and refuse to let injustice stand.  We need artists and creatives who show us with words and paint and dance and pixels how the world could be different.  And we need them all to help us make this possibility a reality.

It feels cliche to say this as an artist, but I have always felt different from most of the people around me.  I rarely felt like I fit in, except for with the occasional kindred spirit I would meet, shining like a beacon in the night.  Those other beautiful, misfit souls who also felt like they didn’t belong; when we were together, suddenly, we did belong.  And I am very lucky to have married such a man!  Having just a few people like that in your life, people who truly understand you and appreciate you for you you are right now in addition to what you might be can make all the difference in the world.  It can be the difference between life feeling like a desert wasteland or a lush garden, full of birds who eat from your hands and fawns who curl up on your lap like a Disney movie.

Humans need to feel understood, to find their tribe.  I am very grateful to have found so much of mine, both online and off!

This square hole is in my mother-in-law’s house and usually houses a very handsome metal owl sculpture.  She was kind enough to let me move the owl and Geoff was sweet enough to help me shoot with self portrait in it (along with a number of other self portraits which I’ll eventually get around to editing).  He was also in charge of making sure I didn’t plummet to my death; one side of the hole is about chest-high on me, on the second story of the house, but the other side opens into the main living room, probably 20 feet high.  I am quite scared of heights, but I will brave a lot that I wouldn’t normally endure for the sake of art… especially if Geoff is there to make sure I stay safe.  🙂

Don’t worry if you feel like you don’t fit in.  You will find your people.  And once you do, the whole journey will feel worth it.  Dance to your own drummer.  Break out of the mold people try to put you in.  Live your life authentically, because you’re the only one who can.

Square Hole: a self portrait © Sarah Allegra

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Angels, Unicorns and Faeries… In DreamWorld And Not

I have new images for you as well as some updates about my personal life!  Since most of my personal life ends up coloring my images in some way or another, I suppose that makes everything relevant, right?  🙂

Mountain Dweller series teaser – © Sarah Allegra

I recently had a shoot with a model who was new to me, the lovely Teri Wyble!  Sadly for me, she does not live in Los Angeles, but she does travel here now and then and we’ve already made plans to do more shooting next time she’s in town.  She was such a joy to work with; she’s not in modeling just to look pretty or puff up her ego, she’s interested in telling compelling stories.  She has a natural grace and beauty which lend themselves perfectly to my kind of photography.  On top of that, Teri is also just a really wonderful soul, full of love and kindness, and we share many of the same interests.  It was a perfect collaboration!

I’m also going to be sharing a bit of my spiritual journey with you guys here.  For anyone who’s curious, I am a lightworker, but I don’t define my spirituality much beyond that.  Organized religion does not work for me, but I know many people who love their branch of it.  If it’s a good fit for you, stick with it!  If not, you’re still ok and you can still be a spiritual person.

Mountain Dweller 1 – © Sarah Allegra. Model: Teri Wyble.

I believe in an unconditionally-loving higher power, which I like to refer to as Source.  “God” brings to mind all sorts of connotations which I personally find hindering.  I believe that everyone and everything is made up of energy, as physics teaches us, and since energy cannot be destroyed, it’s most logical to me that life continues beyond death.  I have no doubts about this.  I have spoken to and had contact with those who have passed over… which would have been enough on its own to convince me of our eternal life, but I do feel science supports this idea as well.

Toward the beginning of the year, I experienced an EXTREMELY powerful guided meditation with a lovely woman named Mojo.  If you’re interested in her services, you can find her page on Fiverr here!  She currently doesn’t advertise her guided meditations, which she does live over the phone with you, but if you contact her, she can arrange it for you.

Mountain Dweller 2 – © Sarah Allegra. Model: Teri Wyble.

During this guided meditation, I actually got to meet and speak with my two main guardian angels.  Prior to this, I had believed in angels in a vague sort of way, but despite how much I would have liked it, I never felt that I could successfully connect with any of them.  I have also done other guided meditations which are supposed to introduce you to your angel without much success other than feeling more centered afterward, like with any meditation.  My point is, the meditation with Mojo was very different.  I could actually feel and sense my angels; I could hear and even see them in my mind.  I know now that they have always been with me every second of my life, and they will for the rest of my time on earth.  I am never alone and they are a great comfort to me.

This new connection with my angels led me to buy a handful of books about angels; I wanted to learn EVERYTHING that I POSSIBLY could about them!  As I’m sure you all know, my passions are all-consuming.  When a new one ignites, my life becomes focused on that and only that until I feel I have a grasp on it.  For anyone else interested in learning more about angels, I recommend Angels In My Hair by Lorna Byrne, and The Angel Therapy Handbook by Doreen Viture.  Both are fascinating, well-written and impart excellent knowledge.  Angels In My Hair is more of a memoir while the Angel Therapy Handbook is more of a textbook.  I feel they compliment each other well.

Mountain Dweller 3 – © Sarah Allegra. Model: Teri Wyble.

I mentioned being a lightworker a little bit ago.  What I mean by that is that I am certified at level 2 in Reiki.  I do energy work, sending positive energy to people, animals, places, situations, objects, whatever you want.  It’s healing and can never be used to harm.  I also began meditating much more regularly this year.  In the past, when I’d try meditating, I would always enjoy the effects of it, but I had a lot of trouble making myself do it with any consistency.  I’m not sure what changed, but for some reason, this year I was able to push past that.  Once I got over that initial block, I discovered that I LOVE meditating!  It’s incredibly healing and healthy for your body, mind and soul.  I found it was a bit like starting to work out.  At first, you don’t really want to do it, but after a little while of making yourself stick with it, you like it and actually begin craving it.  I now have meditation (guided and not) as a regular part of my life and I’d highly recommend it to absolutely everyone!  One thing I discovered are the millions of meditation tracks on YouTube; literally something for absolutely everyone and every interest.  There are also long tracks of nature sounds and/or music, some with binaural beats in them, some lasting up to eight hours, so you could listen to them all night while you sleep.  I’ve been learning a great deal about crystals as well from my dear friend Jessi who owns the shop Mineralism Crystals.  I HIGHLY recommend her if you’re in the market for anything!  Even if you don’t see something in her online shop, chances are, she has it.  I’ve placed numerous orders with her and they always exceed my expectations!  Also, she is a fellow spoonie, so your money goes to help support her as she’s unable to work a “regular” job; win-win!

As all these new revelations were opening up to me, meditation, angels, being able to “hear” animals more clearly when I contacted them energetically (for example, I was able to help one very special cat overcome his abandonment fears when he was newly adopted, something I was honored to have been a part of), Teri came along and we had our shoot.  I knew that I wanted some of this deeper spirituality to be reflected in something we shot, but I wasn’t really sure how.  However, I did know that I wanted to photograph Teri in a beautiful lace dress I had… that combined with feeling inspired by some images Geoff shot recently with a back-lit model that made me decide I would shoot an “angelic” look with the gauzy white fabric and light behind her.  (Although really, just try and make her NOT look angelic; that would be a far more difficult job.)

Mountain Dweller 4 – © Sarah Allegra. Model: Teri Wyble.

As I suspected, Teri made the perfect angel.  Sorting through the images later, I realized that I was creating a new race of DreamWorld beings.  The Aethereans, as I called them, are DreamWorld’s angels.  They live high in the mountains, away from the more populated areas so they can be focus on devoting themselves to spiritual studies.  They are very wise from their decades of pursuing the truth in every facet of life, as well as skilled and compassionate healers.  Many of the other DreamWorld inhabitants send their young to train with the Aethereans for several years, where they are taught empathy, love, plant and animal care, healing, sacred geometry and the mysteries of the universe.  I thought that the Aethereans needed some kind of uniform or mark that visually informed everyone of who they are and the spiritual life they have chosen for themselves, so I decided they would all have a flower of life symbol on their foreheads.  I wish I’d thought to actually apply this in real life to Teri, but this idea only came later.  Thankfully, Photoshop made it possible to add it to all the images!

Teri did such a spectacular job modeling, she made it so very difficult to choose which images to work up!  I ended up editing quite a few more photos than I typically would pick because I simply could not narrow my selections down any more.  It took a bit longer to finish these because of the volume I had to work through, but also because of a couple other wonderful new journeys I was taking…

Mountain Dweller 5 – © Sarah Allegra. Model: Teri Wyble.

Through a very miraculous series of events, I discovered Calista Ascension.  Calista is one of those very rare spiritual teachers who actually embodies and lives everything she preaches; I have met very few more accepting, genuinely loving and wise people in my life.  She offers numerous classes which I was lusting after, but when I saw that she created her own Unicorn Healing System which I could take online from the comfort of my home, I was hooked.  I had to take it.  Immediately.

I’ll let Calista explain the course in her own words:

Unicorn Healing™ is a hands-on healing modality for empowerment and wellness, but also a development tool that can awaken your Souls’ gifts and purpose. It can be used as a stand-alone therapy or complemented with other energy practices.

Brought forward in 2009, direct from the Unicorn realm via Calista, it is a very sacred modality that can provide all that you are ready to receive.This is a course for those who are ready to step-up, break-through and arise in their POWER!

Just as you have a Guardian Angel that walks with you so to you have a Guardian Unicorn. Once regarded as the fabric of fairytales, Unicorns are very much real. They have walked with us since the times of Atlantis and are now returning to our awareness to help us awaken to love and the infinite potential we hold within.

As this is a distant learning course, you can set your own pace and progression. A commitment is required however as this course is deeply transformational – the more you put in, the more you will receive. The Unicorns are ever-present to those who wish to better themselves and assist Mother Earth to ascend with grace. 

Yes.  Unicorns.  REAL Unicorns.  As I mentioned earlier, I am well-versed with Reiki energy, which, I learned, is apparently an earth-based energy.  The Unicorns however hail from another planet (bear with me here) so their energy is cosmically-based.  (For those interested, Calista recorded an excellent podcast all about who and what the Unicorns are, where they come from, etc, with much more detail than I’m giving in this post, which you can listen to here.)  I hadn’t expected their energies to feel particularly different from each other; I just hadn’t thought about it.  You may believe that these Unicorns are simply a pretty fantasy I’m escaping to in my imagination (which I’ll freely admit is an escape I would likely pick!) but OH MY GOD – once you’ve felt their energy, there is NO mistaking them.  They are every bit as real as we are, and their energy is incredibly powerful… yet also full of the most unconditional love I’ve ever experienced.  It’s nearly impossible to describe how energy feels in words, but the ones that keep coming to mind when I think about my Unicorns are high, clear, clean, bright, powerful, silvery, shimmery, penetrating, deep, beautiful, wise, loving, celestial, ethereal, and immense.  I love Reiki, but the Unicorns really kicked things up a huge notch for me.

Mountain Dweller 6 – © Sarah Allegra. Model: Teri Wyble.

As part of my studying, I went through an attunement with their energy, where I met my three guardian Unicorns, who all serve different roles, and who are all equally exquisitely beautiful.  I spent 30 consecutive days meditating and communing with them every day in different ways so we could really get to know each other.  And I also practiced doing healings with the Unicorn energy, both in person and across distance, much like you do with Reiki.  The Unicorn healings I’ve done so far have been the most powerful I’ve yet witnessed in my life.  Problems that have bothered people for very long times suddenly lose their sting, allowing the people to let go of them.  Hurts are overcome, trauma is healed.  They are truly miraculous.  And my guides assure me that I will become physically healthy myself in time.

My guides… yes, I should mention the other guides too.  Meeting the Unicorns as well as my angels has opened my mind up to the idea of there being more spiritual guides for us in the universe than I had previously realized.  Currently, in addition to my guardian angels and Unicorns, I also have a dragon guide, a pegasus guide and a mermaid guide, although I have not worked with them nearly as long or as deeply as the Unicorns.  I’ve also started to sense and sometimes communicate with the elementals all around me.  The trees in my yard, for example, will remind me if the bird feeder has gotten low or the plants need watering.  I’m becoming a MUCH better gardener with their help!  🙂

Mountain Dweller 7 – © Sarah Allegra. Model: Teri Wyble.

Then, right on the heels on my finishing up my Unicorn Healing course, I began taking Doreen Virtue’s Fairyologist course!  This is more or less what it sounds like; you learn all about the various fairies that exist, what they’re about (the fairies are mostly concerned with environmental and animal issues, but certain groups emphasize different causes), how to communicate and work with them.  At the end, you take a quiz and, assuming you pass, you become a certified Fairyologist.  As I’m also in the process of having all my Unicorn work reviewed by Calista as we speak, I’m on the cusp of becoming both a certified Unicorn Healer and a certified Fairyologist… both are NOT things I expected that I’d be saying if you’d asked me at the beginning of this year!

I’m telling you guys about all this for several reasons.  One, working with my guides and walking my spiritual journey is becoming an ever-more-present, ever-larger part of my life.  I wanted to just lay it all out there in one go and not feel like I had to tiptoe around it on my own blog.  Two, everything in my personal life effects my art.  Case in point, the images I’m releasing today.  I probably wouldn’t have even shot them if I hadn’t met my guardian angels, and I certainly wouldn’t have added the Flower of Life symbol to the Aethereans (who would not exist) without having learned more about sacred geometry in my studies.  In my life, there is very little separation between the real world and my art.  It’s all one big pot of stew where each ingredient enhances all the others.

Mountain Dweller 8 – © Sarah Allegra. Model: Teri Wyble.

And lastly, I’d like to invite all of you to explore your own spirituality.  When you find what works for you, there is very, very little in life that is as rewarding!  There are many charlatans both online and off, so you must be discerning in who you choose to listen to.  A strong connection to your intuition and sense of truth will help you navigate the waters.  Any of the people or authors I’ve mentioned in this post have gotten the thumb’s up from me if you’d like to start there!

Mountain Dweller 9 – © Sarah Allegra. Model: Teri Wyble.

I am an energy worker.  I work with Unicorns and angels.  I talk to animals, fairies and elementals.  I am a creator.  I collect crystals.  I am an empath.  I am a photographer.  I am clairvoyant and clairsentient.  I am a fulltime student of truth.  I am a healer.  I am a woman.  I am an artist.  I am Sarah.  I am me.  I don’t apologize for any of that.  You go be you, and don’t apologize for any of it either.  🙂

Mountain Dweller 10 – © Sarah Allegra. Model: Teri Wyble.

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5 Years of ME and Me

Yesterday, the 27h of May, marked my five-year anniversary with ME… which leads me to talking about why I call it ME verses the multitude of other names given to it, in addition to introducing my latest photo on the subject which you can WIN a print of!  Make sure you read all the way to the end to find out how to enter 🙂

A detail shot from my new photo

I’ve been wanting to address this for some time and it just keeps getting pushed down to the bottom of my blog to-do list.  But my anniversary seemed like a good time to bring it up.   In the United States, we call ME by a whole host of other names; Chronic Fatigue Syndrome (CFS), fibromyalgia (fibro), chronic fatigue immune dysfunction syndrome (CFIDS), post-viral fatigue syndrome (PVFS), Chronic Epstein-Barr virus (CEBV), and most insultingly, the “yuppie flu.”  Luckily we seem to have mostly left the “yuppie flu” label behind us, but many of the other names are not much better.  Calling it Chronic Fatigue Syndrome has been likened to calling tuberculosis “Chronic Coughing Syndrome,” or stomach cancer “Chronic Upset Tummy.”  The names are not indicative of what’s really happening in our bodies.  They are trivializing and patronizing.

I like myalgic encephalomyelitis (ME), which is what most of the rest of the world calls it.  It literally means “inflammation of the brain and spinal cord with muscle pain.”  This at least hints more accurately at what may be going on.  Muscle pain is one of the defining characteristics of reaching that diagnosis (as I can personally attest to; I woke up nearly weeping from muscle pain after a strenuous shoot yesterday) and the evidence is suggesting more and more that this is ultimately a neurological condition.  ME at least doesn’t carry the negative connotations of the other names; people are generally under the assumption that they are not “real” diseases.

In Between Awake And Asleep

I should be perfectly clear that there is still a tremendous amount of controversy over what name to give us, and if they really are all more or less the same disease.  I genuinely believe they are the same disease from everything I’ve seen and read, but there will be many who do not agree with me.  However, since the entire reason the US broke off from the rest of the world’s name in the 1980’s was to create an insurance loophole so companies could deny coverage to patients… I am reluctant to believe what anyone on that side of the table claims.

So I call it ME, though since it is a lesser-known name here in the US, I’ll often consent to referring to it as ME/CFS.  Meeting the names halfway, so to speak.

As I said, yesterday was my five-year anniversary with ME, although the signs were certainly starting to form years before that.  I was unnaturally tired all the time, I got sick and injured easily and seemed to have a little more trouble healing.  But since I barely knew ME existed, and I was young, in my late teens and early twenties, I figured it would pass.  You think horses, not zebras; you don’t automatically jump to the conclusion that you have a strange, little-known disease.

A Fading Girl

Some of you have heard the story of how I became acutely sick with ME before, so I will try and just hit the high points.  Five years ago Geoff and I went out to lunch.  We’d been dating for exactly a month.  After lunch, I felt tired so I laid down and took a nap.  When I woke up, my stomach was very upset and I thought I had food poisoning.  Though it wasn’t pleasant, I figured it would pass quickly.  Several days later I still felt nauseous, so I saw a doctor who was very unconcerned about me and suggested I take some Pepto Bismol.  How helpful.  Over the next several days the pain in my stomach gradually changed from an all-encompassing gripping, nauseous pain to an extremely sharp and localized pain in my right flank.  Appendicitis? I wondered.  The pain was higher than would be classic, but it was so sharp, extreme and had come on so suddenly, I worried nonetheless.

After 10 days of pain and nausea, I finally saw a good doctor.  They determined pretty quickly that it wasn’t my appendix, ordered an ultrasound and a LOT of bloodwork (the only reason I didn’t faint was because I was sitting down, but I felt bad enough to wish I’d fainted.)  Everything came back normal.  They thought it must be a kidney infection, so I took the antibiotics, glad that we had figured out what was wrong and that I’d be over it soon.  But the treatment didn’t do anything; I still felt terrible.

That same story repeated and repeated over the next few years.  For a long time it was thought that my crazy flank pain and my fatigue were two separate problems; at this point, I believe the evidence indicates they both stem from the same cause.  I have undergone more tests and procedures than I care to remember, I have tried every food and supplement imaginable; every Western and alternative approach.  Occasionally I find something that helps even fractionally, and I cling to it like a drowning girl.

When I think back on this time, I feel like what was happening in my body is best expressed by this scene from Akira, near the end of the movie.

Tetsuo’s grim end.

My body seemed to completely fall apart and spiral out of control, with me stuck in the middle of i.  Up until then, I had been quite consistent with doing Pilates and yoga, and enjoyed their effects on my body.  I ate pretty well, I didn’t smoke, drink or do any drugs.  I felt like I was doing things right.  But when ME finally hit, none of that mattered any more.  My body became a disgusting, horrible prison with a mind of its own, seemingly bent against me in every way.  And the fact that almost none of this showed outwardly made it even worse.  One of the things I hear from other ME people as being the most frustrating thing is having people say to them, “You don’t look sick.”  It’s true, often we don’t (until you get into the very dire, extreme cases of ME) but inwardly, that movie clip is what I felt was happening to me.

Thankfully, the flank pain has been reigned in somewhat over the years through arduous nerve-blocking injections, although it never truly goes away.  And we still have absolutely no idea what’s actually causing the pain in the first place.  But since it used to feel like I had a shard of glass trapped inside my abdomen, I’m very grateful for every bit of pain chipped away from it.  The fatigue and muscle/tendon/anything-but-my-flank pains have all gotten steadily worse over the past five years.

The Fog Rolls In

My life has become smaller and quieter each year in response to the unreasonable demands of my body, only to have it ask for even more.  To a degree, it’s generally agreed that staying as active as possible is best; that “if you don’t use it, you lose it.”  This is tempered with one of the few things known with absolute certainty about ME: if you continually push yourself past what you can handle, you WILL get worse.  And it can get much, much worse than what I experience.

The UK documentary Voices From The Shadows paints an uncomfortably vivid picture of how bad ME can really get.  It shows people completely bed-bound, in constant, wracking pain, despite morphine drips, eyes continually covered as they are unable to endure even sunlight filtered through curtains.  Ears always protected with earplugs because they are so sensitive to sound.  From my end of things, going to the grocery store is only barely tolerable.  All the light and noise, oh the cacophony of noise… people talking, carts wheeling, plastic crinkling, children crying, music playing, announcements made… I genuinely dread the necessary trip each week.  And if I feel that way about it when my case of ME is one of the mildest diagnosable forms, I can hardly imagine the miserable existence the poor souls with severe ME endure.

Unjust

I don’t want to have to know what severe ME feels like first-hand.  So I keep trying treatments and supplements.  I modify my bedtime, my sleep habits and try to rest as much as possible, without giving up any of the physical ability I still have.  I try to do gentle yoga and do more walking, which I can also use as time to scout locations.  My family and friends all know that any plans made are subject to the whims of my body and I may have to cancel at the last minute.  Very, very thankfully, they have all been extremely understanding and supportive.  It’s a hard enough battle to fight your body every day; I am sorry for those who also have to fight with their loved ones too.

People not understanding is at the core of our problems.  The medical community that doesn’t understand what our disease is or how to help us.  The public, who have been led to believe our disease is not valid.  And we ourselves who are trapped in these confusing, maddening bodies that seem to be actively working against us.

Breakable

Luckily, I do believe the tide is finally starting to turn.  More and more noise is being made about ME, and we are starting to get even a little bit of recognition and validation.  More research is being dedicated to finding out what’s really going on in our bodies.  I try to maintain a balance between being open to changes coming and breakthroughs being made without actually hoping for them.  The disappointment is too great when they don’t pan out.

Through it all, the highs and lows, the dinners I can attend and the ones I have to stay home from, the times I weep from pain and frustration and the days I walk easily through meadows, I have my art.  I’m sure you’ve all heard me talk about my Enchanted Sleep series, photos from which are scattered through this post, and how I use my photos to portray what living with ME is like.  Art has helped me keep my sanity through these last five years.  It’s something I can do, not just in a metaphoric sense and raising awareness, but it’s physically something I can do.  Walking through the woods scouting locations is good for me, body and soul.  I can still edit even when I need to lay down (which is frequent) since I work on a laptop.  Sometimes muscle or tendon pain in my right arm or wrist will force me to stop for a few days or weeks, and those are always agitating times.  I want to be creating.  That is where my soul finds meaning and pleasure.

Spoon Theory

It’s been a rough five years.  But it’s also brought some incomparable joys to my life; my discovery of photography, for example.  And most importantly, Geoff.  Geoff who stuck by me when I became very ill after we’d only known each other for two months, and been dating one month.  Lesser men would have run.  He has supported and loved me every step on this tricky road, and is always there in the dark moments when I want to give up.  He gently pulls me up and sets my feet going again.  I am so incredibly grateful for him.

To be honest, I have been depressed with this anniversary looming ahead of me.  I have heard that if you don’t go into remission within the first five years, you’re never going to.  And while intellectually I realize that’s a pretty ridiculous, sweeping statement to make (how could anyone possibly know that when we don’t even know what it is we have?) it’s made this date feel even gloomier.  I am choosing to not believe that I will automatically never go into remission, simply because it hasn’t happened yet… but it’s also ok for me to feel sad.  It’s ok for me to mourn the things I have lost.  It’s ok for me to have bad days when I just cry and burrow under the covers all day.  It’s ok to be human and have emotions.

Mourning For Things Lost

I work hard at my art, not only because it’s so deeply satisfying, but because it’s something I hope to make a career out of.  Means of employment get fewer and fewer for me every year, but I can do art.  It’s a way for me to earn money and contribute to my family’s income, things very important to my sense of identity.

I think this is going to be a good year for my art.  Not only with my recent good news, but other things are starting to happen too.  I think this is going to work.  But please feel free to support my work and pick up some blank greeting cards, limited edition prints or sign up for my online self-discovery-through-photography course.  🙂

Each journey through ME is different.  This is just my story.  I can only hope that by telling it, it adds another drop to the sea of change coming and will bring us a tiny bit closer to recognition and a cure.

Longing For Better Days

I’ll just say a few words about my latest Enchanted Sleep photo, Vanity’s Murder.   My hair has always been quite fine and refused to grow any longer than my shoulders.  No matter what I did, how often I did or didn’t cut it, nothing changed that.  While it’s always annoyed me, since I would love to grow it romantically long, it was a fact of my life that it never would.  A few months ago, I thought my hair seemed a little shorter, but I dismissed the thought.  It kept nagging at the back of my mind though, even though I hadn’t gotten it cut in months.  Finally, I looked at a photo of me from about six months ago and I was shocked by the proof of how much shorter my hair was; nearly down to chin-length.

I went in to my doctor, since hair thinning and loss is a possible side effect of almost every medication I take, but he suspected it was a response to stress, not medication.  I finally made an appointment to see my fantastic hair guy (Hurley, at The Hair Pyrates).  He agreed that the loss was probably stress-related too, but importantly mentioned that the hair I’m seeing now first started growing four to five years ago… and I think we can all agree that I started undergoing a great deal of new stress five years ago.

After everything ME has taken from my life, all the things it’s made me give up, my hair just felt like the absolute last straw.  I had no idea how much of my feminine identity was tied into my hair until its existence felt threatened.

The good thing about stress-induced hair loss is that it’s usually pretty reversible, at least in theory.   At Hurley and my doctor’s suggestions, I started taking a hair, skin and nails supplement and I was startled by how quickly I saw a difference.  It still has a ways to go, but I’m so grateful that it is coming back.  Worrying about my hair may seem like a very superficial, frivolous thing, but it wasn’t to me.  It was about having one more thing taken away from me, it was about losing control over another big factor of how I appear to the world, and the things that contribute to my identity.  There is so much about ME that is outside of my control.  I am very thankful that this time, I could fight back, and actually win a little.  Let’s hope this is a sign of things to come.

Vanity’s Murder

Vanity’s Murder – detail

Vanity’s Murder – detail

Vanity’s Murder – detail

Vanity’s Murder – detail

Lastly, let me tell you about how you can win a signed and numbered limited-edition print of Vanity’s Murder!  The very kind people heading up the ME and You fundraiser were very receptive when I wrote them and offered to donate a print to their cause if it would help them.  And while I’m sure they have more than enough on their plates, they quickly came up with a way to do this!  Want a chance to win the print?  Follow the directions below!

• Click on the ME and You button below and donate whatever amount you can through the big yellow “Donate” button on their site.
• Leave a comment on this post saying that you donated and mention that you’re entering to win Vanity’s Murder, as several artists are doing similar giveaways.  Make sure that the name you leave in your comment matches your Paypal name!
• Leave a message for the ME and You people during your Paypal  checkout, again stating that you’re entering to win Vanity’s Murder.
• A winner will be randomly selected on June 6th and I will announce the winner here!

That’s it!   This is such a win-win situation; the cause is so worthy and someone will get a beautiful print as well.  🙂  For anyone who missed it, the amazing people at ME and You are trying to raise funds to do further testing of a new drug that has shown real promise in helping to cure ME.  This is something we absolutely must study more, and hopefully, within a few years it will be approved and people all over the world will be able to try it.  And just maybe, some of them will go into total remission like some of the people who it’s been tested on.

Remission.  I can hardly imagine what that would feel like.  But I would love to find out.  If you can, please consider donating to this great cause.  And thank you very much!

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