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Posts Tagged ‘life’

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!

Mourning Dove

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As so often happens with DreamWorld, the inspiration for this set of images came close to a year ago.

The Pink Mother © Sarah Allegra

The Pink Mother series © Sarah Allegra, model: Dedeker Winston

Last summer, I had recently watched some of the BBC’s episodes of Life, their truly excellent series on all kinds of wildlife.  I was watching it while I edited other images (I rarely watch TV without doing a second activity, unless we’re talking about shows like True Detective, Breaking Bad, Boardwalk Empire, Rectify, etc, which all demand my full attention) but my editing suddenly halted when this segment came on.

I remember backing it up and watching the whole piece again, mesmerized, deeply touched and saddened by such complete, beautiful devotion from any creature to another.  As I watched it a third time, I knew a photo was going to come out of it somehow… it was resonating too deeply with me for anything else to happen.

Now, as to how the medieval elements worked themselves in… I can only give you guesses since I’m not really sure how my brain made the jump myself.  I know that part of it had to do with wanting to give her eight “tentacles” of some kind (which made its way into her hair) and wanting to give her a pouch to carry her eggs in.  For some reason, I thought of a kirtle, a medieval garment which lasted for several centuries.  The kind I was picturing were from, I believe, earlier on in the medieval period and looked more like what we might think of as over-dresses or fancy aprons.

A kirtle from a modern pattern by Burda.

A red kirtle from a modern pattern by Burda.

Researching medieval garments inevitably led to medieval hair… images like these set my brain whirling.

You can see how the braided and wrapped hair, along with beautiful headdresses leaked into my character.

As usual, I wasn’t sure how I was going to do this when I started into it.

I had a longish, dark brown wig which I’d bought very cheaply quite a while ago.  When it arrived, I realized why it had been so cheap; it was already snarled and tangled before I’d even taken it out of the package.  I halfheartedly attempted to work the same wide-tooth comb I use for my own often snarled and tangly hair and quickly realized it was a futile endeavor.  I tossed the wig into the back of the closet and mostly forgot about it.

When this project came up, I remembered it though.  Even though it poofed up like a drying poodle as I combed it, that would work in this case, since I’d be wrapping it up and looping it around.  I spent most of one afternoon just combing it out – not detangling it, mind you; there was never any hope of this wig being tangle-free.  My best hope was to get it to the point where I could separate it into eight segments.  It took all the strength in my arms and they were very unhappy with me for the next few days, but I managed to do it.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

In the meantime, I had discovered arm knitting, which I found I could do without a) using much brain power, b) quickly c) without using much muscle power and d) it had very pretty and interesting results.  The resulting squares and shapes I made from the looping yarn had such a beautiful, organic look, almost like a coral reef or some other under-sea plant/creature, that it felt completely at home with an aquatic-inspired creature.

After the combing session, I put the wig away for a day or two.  I brought it out again after my arms had regained a little strength.  Of course this also meant that it had had a couple days left completely on its own without any outside help to start tangling again, so I spent a little time re-combing it to get it back to a manageable state.  I quickly arm-knit a band of yarn which would form the circlet of my headdress and made sure it would fit.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

Then I divided it into eight more-or-less equal segments and put a hair band around each one to help keep them from getting into too much trouble.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

I put the circlet of yarn back on top of the hair and began crisscrossing the yarn (which was a beautiful, slightly metallic variegated blend of soft pinks, blues,  lavenders and silvers) over the different segments, using liberal help from my glue gun to keep everything in check.  Each segment was attached back up to the main part of the circlet after its crisscrossing was done.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

The two front, face-framing sections of hair were left for last.  I added some looping pieces of yarn between the other segments to make it more headdress-like.  The front segments got crisscrossed with their own lengths of yarn and were then attached to the very back of the circlet, forming two large loops on either side of the face, with hair tentacles hanging underneath them.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

Then was the fun part: beads!  I raided my bead stash, with an eye toward pieces from a very elaborate headdress I’d made which had recently died, spilling beads all over the floor.  I knew there were some really cool pieces which I’d used for it, so I repurposed them again in this piece.  I didn’t want it to be overwhelmingly be-jeweled and sparkly, just enough bling to make the character look a bit important; perhaps some kind of royalty.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

Moving on to her dress, I had a high-necked, sleeveless, pink chiffon dress from Ebay which I’d gotten for little more than a song.  Pink isn’t a color I’m usually drawn to that much, but since the original octopus was pink, my character was going to be pink too.  I kind of eyeballed the general shape of a kirtle from ivory tulle; a lot was going to happen to it and since it was so light and transparent, it didn’t need to be perfectly symmetrical.

I free-styled a yoke for the kirtle with more arm knitting and added some cap sleeves (which are only visible in some of the images unfortunately).  One thing I was finding with the arm knitting was that is is EXTREMELY forgiving.  Arm you within an atom bomb’s range of what you were going for?  Then it will probably work!

To unify the costume and also enhance the organic, oceanic feel, I arm knitted a piece for the bottom of the kirtle, basically a large triangle, and two smaller, upside-down triangles for either side of the egg pouch.  I left several yarn strings loose from the pouch triangles which would be used to tie the kirtle behind the back of the dress, just like a regular apron.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

The eggs were leftover from a shoot I did with Paul Telfer as the Sleeper’s Sentinel.  I’d had to buy a dozen of the super-large plastic eggs so I had PLENTY to use for other shoots!  I kept these fairly simple since there would be a lot going on visually in the images; I started with spray-painting a base coat of a semi-metallic light gold color and added flecks of bronze-black to make them look more like real eggs.  Repeat until they look right.  I knew I’d only need five or six eggs, since that was as many as would fit in the pouch I’d made so I didn’t waste any time painting extra eggs.

The Pink Mother © Sarah Allegra - behind the scenes

The Pink Mother © Sarah Allegra – behind the scenes

I did do one thing to just one egg though…  I found a nail and a hammer and while the egg was still in two pieces, I hammered a hole through from the inside out.  Some sharp knives, pliers and more hammering later, I’d created what looked like a fracture in the egg from a chick inside starting to hatch.  Eggs = done!

I’d had my faithful model Dedeker Winston in mind for this character the whole time.  I usually cast characters in the same way I create them, just by what “feels right.”  I had not consciously remembered it, but it turned out there was a really wonderful real-world reason to have Dedeker play the octopus-mother caring for her eggs.  Dedeker has been an egg donor many times to couples who are unable to have children on their own.  In fact, one family has two children, both from Dedeker’s eggs, and they just requested a third!  It’s very unusual for a family to have so many children from the same donor, but I think it’s really lovely that all of their children will be linked in this extra way.  And clearly Dedeker produces really fantastic babies!  🙂  Once I remembered that, it felt truly serendipitous that we were shooting this character together.

I knew that my wig was several shades darker than Dedeker’s hair and I had a couple thoughts on how to deal with it.  I knew she had a dark brown wig of her own which we could layer under mine, or we could totally cover all of her hair with a wig cap.  In the end though, she simply twirled her hair into a low bun, I set the wig on top of her head and since there was so much going on with the hair, it looked completely natural and blended right in.  If you looked closely, you could see that some of the hairs on her forehead were a bit lighter than the rest of her head, but I matched them up in about 30 seconds in Photoshop.  Sometimes the simplest method is the best!

We set out on a morning last summer to capture these shots of the character I’ve dubbed the Pink Mother.  We got started early and the sun was already blazing; it promised to be a miserably hot day but at the moment it was still pleasant.  I started shooting Dedeker in a dryer, dustier, yellower scene and led her along a path which gradually got greener and lusher, mirroring the octopus’ journey to find the perfect environment for her eggs to be born into.  The color pallet moved from warm and vivid to cool and less saturated, especially in regards to the Pink Mother herself.  As she nears death, the paler she becomes until the last shot, where she is very white.

She sacrificed everything she had for her eggs.  She loved them, cared for them, caressed them.  She journeyed over countless miles to find a safe, green place for them to be born.  Though it cost her everything, she never hesitated.  And, it seems, her journey was worth it.  The cracks in the eggs prove her right.  They were brought forth from the deepest love there is, and that can only be the best start to these new beings.

So thank you to Dedeker for being my medieval octopus mother and letting me share your story about your own eggs!  And thank you for trusting my vision even if it seemed questionable at the time 😉  You were the perfect, purest-loving mother to those babies!

And now enjoy the full images, some detail shots and behind-the-scenes captures!

A Journey Into Strange Lands © Sarah Allegra

A Journey Into Strange Lands © Sarah Allegra

A Journey Into Strange Lands © Sarah Allegra - detail

A Journey Into Strange Lands © Sarah Allegra – detail

A Journey Into Strange Lands © Sarah Allegra - detail

A Journey Into Strange Lands © Sarah Allegra – detail

A Journey Into Strange Lands © Sarah Allegra - detail

A Journey Into Strange Lands © Sarah Allegra – detail

 

The Air Of A Quest About Her © Sarah Allegra

The Air Of A Quest About Her © Sarah Allegra

The Air Of A Quest About Her © Sarah Allegra - detail

The Air Of A Quest About Her © Sarah Allegra – detail

The Air Of A Quest About Her © Sarah Allegra - detail

The Air Of A Quest About Her © Sarah Allegra – detail

 

Migration's Imminent End © Sarah Allegra

Migration’s Imminent End © Sarah Allegra

Migration's Imminent End © Sarah Allegra - detail

Migration’s Imminent End © Sarah Allegra – detail

Migration's Imminent End © Sarah Allegra - detail

Migration’s Imminent End © Sarah Allegra – detail

 

Her Last Act Of Devotion © Sarah Allegra

Her Last Act Of Devotion © Sarah Allegra

Her Last Act Of Devotion © Sarah Allegra - detail

Her Last Act Of Devotion © Sarah Allegra – detail

Her Last Act Of Devotion © Sarah Allegra - detail

Her Last Act Of Devotion © Sarah Allegra – detail

Her Last Act Of Devotion © Sarah Allegra - detail

Her Last Act Of Devotion © Sarah Allegra – detail

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

The Pink Mother © Sarah Allegra

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This will be a short post.  I wanted to share with you all a short video I made for the Microbe Discovery Project, a group using crowd-sourced funding to research myalgic encephalomyelitis, otherwise known as ME.  They asked for people to share their stories of ME with them by video or text, so I did just that.   I always wish I could help them in more concrete ways by giving them millions of dollars, but I’ll help with what I can; being open and honest about my experience with ME and making more people aware that they exist and could use some help.

Hope you all enjoyed the video, and please consider donating to the Project if you have the means!

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Here’s something I’ve never done before: create an image intending for it to be black and white!  I have one other image that was converted for a magazine which required it to be black and white to print it.  I LOVE me some color.  I like using color strategically and thoughtfully.  But something made me think about doing this most recent image in black and white and I loved the idea.  It would be a bit of a challenge and a stretch for me and that’s a good thing.

This image came to be through two sources.  One was a way to help me deal with the grief I was still feeling.  The other was this astonishingly beautiful solo by Ricky Ubeda for the show So You Think You Can Dance, and the gorgeous music and poetic lyrics by David J. Roch.

Don’t lose your soul as your eyes roll shut
Don’t worry, it will be over

You know what’s to come to not accept this
Don’t lose your soul, you must fight for each breath
Don’t go quietly

My soul has flown and I am what is left
I am skin and bones

Who else can look exactly like a leaf being blown across the stage??

When I first watched this dance, it was on a day when I was heavily grieving and I started weeping uncontrollably as I watched it… and was still compelled to rewind the DVR and watch it over and over.  I’ve probably seen it 20 times now in about a week.  I immediately tracked the song down, downloaded it on Itunes and have been listening to it on repeat in the car since then.

I can’t quite verbalize what it is about this performance that moves me so much, which is part of why art exists; to give voice to that which we can’t say.  Though it brought so many tears out of me, there was a hopeful, soothing quality to it within the darkness.  And since I can’t tell you exactly how it makes me feel, the next best thing I could do was create a self portrait.

With Ricky’s evocative dance, David J. Roch’s sober lyrics and Andrew’s death rolling around inside my head, I shot a self portrait which was, as it usually is, very healing to do.  I felt lighter after it.

The “I am skin and bones” refrain immediately made me think of black and white; the visual equivalent of being reduced to simple skin and bones.  The door and handle are holding my body up, and my face is mostly in shadows to reflect both the dark lyrics and my dark emotional state.

I purposely left on my metal bracelet, which I wear every day.  It was made by a lovely person on Etsy who will hammer whatever phrase you’d like onto your bracelet.  Mine reads “That’s what heroes are for.”  A daily reminder to be brave, to continue striving, to be ready to sacrifice for that which is important.  And to me, it was vitally important to include it within this self portrait.  Though its meaning will only be known to me and those reading this, it is a flash of hope and strength at a time when it was most needed.

And that is all I can verbalize about the meaning of this image.  Editing in black and white definitely used different artistic muscles.  I enjoyed the change of pace, but I don’t see myself becoming solely a black and white photographer; I love color too much.

I hope you enjoy this experiment down the black and white lane!  And I also hope that you will vote for Ricky Ubeda in the upcoming weeks of So You Think You Can Dance; I already believe (and hope) he could win the whole contest!  Thank you to Ricky and David J. Roch for providing the art that I needed just when I needed it.  Full song lyrics are below the photo!

Skin and Bones

Skin and Bones

 

Skin and Bones - detail

Skin and Bones – detail

Skin and bones, by David J Roch:

Don’t lose your soul as your eyes roll shut
Don’t worry, it will be over
Hold on though, you’re alone, I am there with you
That much at least I can promise

You know what’s to come to not accept this
Don’t lose your soul, you must fight for each breath
Don’t go quietly

Don’t cry out for God
Just breathe in and out
Don’t cry out for God
Just breathe in and out

We are but lambs to the slaughter now
I have no fear of death itself
So don’t try and save me and please, God, forsake me
I’ll suffer alone, I just want to be left

My soul has flown and I am what is left
I am skin and bones
I am skin and bones
I am skin and bones
I am skin and bones
I am skin and bones
I am skin and bones
I am skin and bones
I am skin and bones
I am skin and bones
I am skin and bones
I am skin and bones

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During the five years of being chronically ill to the point of having to change my life to revolve around my illness, I have tried to keep my spirits up.  I’ll readily admit I’m naturally more of an Eeyore, but I also know that having a positive outlook can have a huge impact on one’s quality of life.  So I try to train my brain to be on the lookout for silver linings; for the beautiful amidst the ugly.

Of course, I can’t speak for everyone with ME, everyone with fibro, or everyone with other chronic illnesses.  These are just the shiniest of the silver linings that I have discovered personally.  Yes, there is a lot of bad along with this good, but that’s a subject for another time.  For now, I want to highlight the positives.

 

1. You Become More In Tune With Your Body

I, for example, have learned that I am quite sensitive to nearly all medications, even more than my small frame would account for.  There is a certain cold feeling I get in my stomach which is the warning for a bout of coldsweats and vomiting coming.  While I used to drink lots of caffeine and couldn’t get through an afternoon without some kind of energy dose, I now drink black tea in the morning, and rarely anything beyond that.  My body felt noticeably cleaner and fresher after I made the switch, and again when I became vegetarian.  You learn to listen harder to the signals your body gives you and take them more seriously.

Vanity's Murder

Vanity’s Murder

 

2. You Learn Who The True Friends In Your Life Are

After the fifth time in a row of my having to reschedule an outing due to the unpredictable whims of my body, most people would stop trying to make the outing happen.  I have been extremely fortunate to have wonderful people in my life who are as understanding about my forced flakiness as anyone who doesn’t have a chronic illness could be.   They know by now that evening events, large crowds and physical exertion are especially hard for me, but they continue to invite me to dinners and parties, always letting me know that it’s ok if I’m not up to it.  I love them for continuing to invite me, even when I have to say no 90% of the time, but even more for not holding it against me.

To The Lost

To The Lost

 

3. You Come To Terms With Your Mortality

Everybody dies.  That is an unavoidable fact.  I’ve found that I, along with many of my chronically ill peers, have given our lifespans much greater thought than our healthy counterparts.  Whether our disease is something known to shorten your lifespan or whether it’s a roll of the dice, we are generally able to come to peace with the knowledge we won’t be around forever much earlier in our lives than is typical.  This can even lead to what I call The Walter White Effect, which essentially says that when you have faced the fact that your life may not be as long as you had once believed, you are motivated into working much harder in the present.  It’s true, any of us could go at any time in an untold number of ways.  But there seems to be a quieter acceptance of this inevitable fate when you’ve had your body occupied with chronic illness for a long time.

All Hail The Queen

All Hail The Queen

 

4. You Life Distills Into The Most Important Components

I have days when there are only a couple hours (often scattered through the whole day) when I can actually get anything done.  Usually I’m able to get a little bit more done than that, and it helps that much of what I do can be done laying in bed with my laptop, but if you only had three or four hours to accomplish anything, what would you use that time for?  Lunch with friends?  Taking care of your pets?  Showering?  Taking photos?  Making love?  While chronic illness robs you of so much time, it also forces you to look long and hard at each of the things you do choose to engage in.  I won’t, for example, spend time editing photos which I’m less than satisfied with.  Which activities you choose to keep can say a lot about what’s truly important to you.

Beloved Of The Crown

Beloved Of The Crown

 

5. You Look At The Big Questions

Can you believe in a god who would allow you to live your life so sick with no cure?  Would that strengthen your faith or wipe any trace of it from your life?  What kind of legacy will you leave behind?  If you’re too sick to work and thus always short on cash, how do you define success in your life when society places so much emphasis on status, power and wealth?  If you, like most of the chronically ill, had to scrap your original plans for what you wanted to be when you grew up, how will you find meaning in the life you’re given?  What is the meaning of life when that life is often confined to a single room?

In Between Awake And Asleep

In Between Awake And Asleep

 

This is, of course, an extremely subjective round-up, based mainly on my own experiences.  What will my distilled, concentrated life look like?  What causes will I champion and where will my energy reserves go?  Where will yours?  Chronic illness tends to create mini philosophers, whether we will have it or not.  And while I will never have all the answers, the questions are still worth pondering.

 

Fae Light - Dedeker looks like she's pondering Big Questions.

Fae Light – Dedeker looks like she’s pondering Big Questions.

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