What Else Can I Say About ME?

Here we are at May 12th again.  Another Invisible Illness Day come to bring awareness to all the illnesses and diseases which are impolite enough to leave their sufferers still appearing to be well.  Of course, anyone more than casually acquainted with someone who has fibromyalgia, myalgic encephalomyelitis, chronic fatigue syndrome, complex regional pain disorder, multiple sclerosis, rheumatoid arthritis, Crohn’s disease, Lyme, lupus and many, many more illnesses can attest to how debilitating they can be.  The facade of health they leave intact feels like salt in the wound; a confusion for those untouched by their cruel hand, a silent undermining force with us at every doctor’s appointment, a declaration that we are lying or greatly exaggerating our illness.

What else can I say about ME?  About all the other forgotten, ignored diseases swept under the rug of modern medicine?  Illnesses which embarrass our doctors with their constant reminder that we remain unhealed.  Sicknesses with confusing, confounding symptoms which can morph and change like the whim of a butterfly’s flight.  Maddening maladies which suck away our vitality, our joys, our passions, our lives as completely as any vampire.

I’ve written about ME extensively as it’s been an enormous part of my life for the last eight years.  How I have not had a single day since late May of 2008 that was free of pain or its constant, overwhelming exhaustion.  How it has progressively gotten worse each year.  How the government would like to pretend we invisibly ill don’t exist.  How grotesquely underfunded our research is, giving us the same amount of money for research as hayfever gets and less than 1/4 of what male pattern baldness receives.  You have heard me spout the facts and statistics.  You’ve heard me talk about my personal story and fight with ME.  What else can I say?

I can say this: I am not beaten.  I have not given up.

I am determined to get better.  I am committing myself to be well, even if I have it about through sheer mental will.  I will not give in to ME’s gloomy, hopeless future forecast of progressively worsening every year.  I am not accepting a future of the living death that is ME.

I don’t know exactly how I will get better, but I am going to.  As a sign of my determination, I changed my blog’s tagline for the first time since I started this blog years ago.  “Art, photography, life and why I always feel like shit,” felt perfectly appropriate at the time.  “Art, photography, life and how those are really all the same thing,” is much more appropriate now.  My identity is not Sarah-who-has-ME.  I am just Sarah.

As I wrote about in my last entry, my life has been pleasantly consumed recently by my spirituality.  I have strongly felt how focusing on fighting ME has been feeding it.  So now, I will ignore it as much as possible.  I do not mean that I will forget my body’s current limits, or not honor them.  Listening to my body and what it’s able to do is vital for my current and future wellbeing.  But I’ve realized that I can live within the confines of my case of ME while still not letting it reign in every area of my life, and that feel incredibly freeing.  This is the path I will pursue.

This also does not mean that I will not advocate for ME sufferers.  I still feel very strongly that the only way we will bring about change is by demanding it.  And we can only demand it if we know that it exists in the first place.  But I can also advocate without allowing ME to rule every part of my soul.

As May 12th approached, I wanted to create a new image for my Enchanted Sleep series, which is all about living with ME.  I asked Katie Johnson, frequent model and collaborator as well as dear friend, if she would help me bring some concepts to life and she gladly agreed to help.  Through a variety of factors, I wasn’t able to shoot these images until very recently, which meant I had a very short window to edit one up and release it for Invisible Illness Day, but I got it done!  Ideally, I would be releasing the whole short series we shot, but I am content with having just one to show you and help illustrate life with ME.  With that, please let me present my latest image to you, Living With The Tombstones.

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

I probably don’t have to explain the symbolism behind shooting this image in a graveyard.  ME (and many other invisible illnesses) truly can be a living, nightmarish death.  Even if you’re not one of the unfortunate souls cursed with severe ME, where any touch, light or sound cannot be tolerated, you die every day to the dreams and hopes you had when you were healthy.  You might discover new passions to pursue within ME’s confines, but do you ever truly forget what’s been taken from you?  If you do, I am not there yet.

I took the name “invisible illness” and interpreted it quite literally, editing out any part of Katie’s body which showed outside her long, princess-like dress.  And the mirrored mask felt like the perfect touch.  When people look at us, they rarely see us; they see their projections of who we are.  Often what they see says far more about them than us.  Some will look at me and, because I can occasionally manage to put on clothes, have Geoff drive and go with him to the grocery store, refuse to believe there could be anything physically wrong with me.  They don’t see the toll that those short, simple trips take on me.  They don’t know that grocery shopping is my ENTIRE plan for that day, probably several days.  How the lights and noise and bustle inside the stores give me migraines, panic attacks and leave me in bed for the rest of the weekend.  They don’t see the weight of my illness on Geoff and my family.  How if I see friends, they always have to come to me.  I so often feel like a dead-weight wife, daughter and friend.  The times I’m overwhelmed by the ME and can’t decide between crying and being too tired to cry.  How many pills I take every day to try and make it to the next day and not be consumed by the constant pain I’m in.  They just see a fairly normal-looking girl.

I can’t blame other people for not knowing that I’m sick.  I don’t display the characteristic signals of someone who is unwell, so of course people assume I’m healthy.  But we need to get to a place where I could tell a stranger that I have ME and they might know what I’m talking about.  That if someone else said they have MS or Crohn’s or fibro, that stranger would have heard of those illnesses.  That the stranger would have at least a basic idea of our struggle and the dire need for change, for research, for treatments, cures and basic respect.

We can get there.  We will.  One May 12th at a time.

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

• Rent or buy the new ME documentary, Forgotten Plague.  Consider hosting a screening of it for your friends and family!
• Write a one-click letter to Congress to increase ME’s funding.
• Join in the #MillionsMissing protests in Washington DC and other locations through the world on May 25.  You can participate even if you’re too unwell to join in person or if there isn’t a protest near you!
• Wear a blue ribbon in real life or add one to your social media avatar.  Thanks to MEAdvocacy.org for the instruction!
• Start a discussion, link to articles, blogs, videos and/or artwork that discusses ME or other invisible illnesses that will help spread awareness.  Add a #may12th hashtag to your posts!
• Donate to an ME-related group, such as the Microbe Discovery Project, or help support those with invisible illnesses by purchasing items from our online shops.  Get some cute awareness-raising jewelry from The Hopeful Spoon, crystals to meditate and heal with from Mineralism Crystals (or just enjoy looking at!), museum-quality fine art prints from yours truly, give yourself or someone you love the gift of self discover and art with my online photography course Introspective, or a wide variety of fun and practical items from my RedBubble shop!
• See this article from ProHealth.net for more ideas!
• Watch and share the video below which I made last year:

I’d like to thank everyone in my life, online and off, who has supported me during these trying past eight years.  Especially Geoff, who I’d only been dating for a month when I became ill.  Lesser men would have run from what he had to face, but he’s stuck with me, no matter how bad things get.  And I’d also like to thank everyone for the extremely warm and receptive response you all had to my previous blog post.  Your kind words and love and support are greatly appreciated, now and always! ❤

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Tanks and Peace

I have had this image in my head for about four or five years and the timing was just never quite right for it.  Thankfully, since I’ve been working with the multi-talented Travis Weinand, I had the chance to do it the way I’d been picturing it for so long!

Are you all familiar with the Tiananmen Square Massacre in 1989?  I’ll give you a rough summary of events.  Some of the details still remain repressed though, such as the number of people actually killed, but I’ll do my best.

In April of 1989, the death of Hu Yaobang, the former Communist Party General Secretary triggered massive protests calling for political reform.  The protests began peacefully and were led mostly by university students, who gathered in Tiananmen Square to mourn and protest.  This went on for several weeks and some of the students took to hunger strikes to express their desire for reform.  Since the entire incident has been so thoroughly repressed, it’s hard to get an inside take on what was happening in the minds of the Chinese government – you can’t very well ask about an event which never officially happened.

However, after the protests went on for weeks and showed no signs of slowing, Chinese leaders decided force was called for to disperse the protesters.  Marshall law was declared, approximately 250,000 troops were sent in; given permission to use lethal force if necessary.

And, as is so often the case, once lethal force has been approved, means for using it will be found.

By June 5th, the heavily outnumbered and out-armed protesters had been largely slaughtered.  Exact numbers remain unknown; official records report 200-300 died; earlier reports fro the Chinese Red Cross on the morning of the 4th recorded 2,600 deaths, which was later retracted.  Regardless, the students stood no chance against an armed and deadly militia with orders to make them go away, whatever it took.

And then we come to June 5th.

After weeks of unrest leading to a brutally bloody and deadly fever pitch, by the 5th, one man, at least, had had enough.  As the tanks came rolling into the square to continue to get rid of the protestors, one man made his stand in a way which still shocks and awes people today.

With nothing more than a few shopping bags in his hands, he stood in the tanks’ path and forced them to stop.  The tanks tried to maneuver around him, he stepped back in front of them.  After the massacre he had surely witnessed over the past several days, this goes beyond mere heroism.  This was fearlessness.  He was angry, and no matter that the tanks could have kept rolling and ran him over, or they could have chosen to shoot him as soon as he came into view, he stood.  And for minutes, a single man stopped an entire line of tanks.

At one point he even climbs on top of the tank, bangs on it and demands to speak to the person in charge.  After a few minutes, a group of people, who seem to be protesters also, join him and hustle him out of the way, probably fearing, with good reason, for his life.

No one knows who this man is.  The world has called him Tank Man, a fitting name.  We don’t know what happened to him.  Was he arrested, was he killed, or did he simply never know the incredible impact his act of sheer bravery had on the world?  With the extend to which the massacre has been suppressed in China, it’s quite possible he never knew his act was recorded or that it became famous.  I would love to know what happened to him, but so far no one has come forward claiming to be Tank Man or knowing who he is.

One man against a line of tanks.  He knew the events of the days before and how deadly the protests had become.  He knew that he would likely be shot or run over.

But his one act of peaceful, quiet defiance stopped an army.

That is what I wanted to celebrate in my image with Travis.  I wrapped a mantle of white flowers around his shoulders, both to symbolize purity and peace, which we typically associate them with in America, and also for its association with death in the Chinese culture.  I instructed Travis to be quietly, peacefully strong, but unshakeable, and rolled up a piece of craft foam into a tube to shoot the image through, as if you were looking down the barrel of the tank at him.  I climbed a ladder to get a view where I’d be higher up than Travis (not as easy as you’d think since he’s so tall and I’m so short!) and shot away.  Travis perfectly embodied the exact emotion and look that I’d asked for.  It doesn’t get better than that.

I hope that Tank Man is alive and well.  I hope that he knows the impact his defiance had on the world.  I hope we discover some day who he is.  Until then, he will be Tank Man, the many who stopped an army.

Tank Man © Sarah Allegra

Tank Man © Sarah Allegra – detail

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Medieval Octopi

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

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 red kirtle from a modern pattern by Burda.

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

From http://sites.tufts.edu/putajewelonit/2011/09/21/glossary-of-english-hairstyles-headdress/

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

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

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

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 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

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

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 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

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 – 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 – detail

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

 

Migration’s Imminent End © Sarah Allegra

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 – 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

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DreamWorld: Lady Death

Lady Death is another DreamWorld character I’ve had in my head for a long time before I had the chance to photograph her.  Sometimes that can be frustrating to postpone your idea for so long, but in this case, I’d imagined the image for so long and in such detail that it made for an extremely easy shoot!  I knew exactly where everything should go, how to light it, the pose I wanted; it was all in my head and I just had to get it shot.

Lady Death © Sarah Allegra – detail

Let me tell you a little bit about the inspiration of her character.  Lady Death is, as her name suggests, the incarnation of death within DreamWorld, but I didn’t want her to be the common, dark, grim-reaper version of death we see portrayed frequently.  The concept of how she would appear came from a mix of Deerskin, by Robin McKinley, Come Lady Death, by Peter S. Beagle and a dash of my own attitudes and ideas about death.

I’m going to quote from Robin McKinley’s Deerskin and not give you the context which this passage is happening in, for one because if you get me started talking about Deerskin, it will take up more than this entire post, and also because it’s not incredibly important for my point and I want you to be intrigued to read it for yourself.  I will simply say that this all happens in the first quarter of the book, so it is not the end it sounds like.

“Lissar went on breathing as she looked, because she did not know how to stop; but as time passed she felt the cold upon her [naked] body, feeling it like a soft inquisitive touch, like the feet of tiny animals.  She did not recognize pain as present experience, for such distinction was too subtle for her now; rather it was that was what there was left of her, as screaming had been her existence some time before.  The creeping cold was a change, or further refinement, upon her existence.  But the cold was not content to pat at her skin and then grasp her feet, her hands, her belly and thighs and face.  It wormed its way inside her; but [she could not resit it].  Nor, she found, did she now want to, for the cold brought oblivion, the cessation of pain.

And then she saw its face, and it was not an animal at all, but Death, and then she welcomed it.  Almost she made her split lips work to give it greeting; but her voice had fled away some time before.

I am dying, she thought, in the guttering of consciousness, I am dying, she thought, in the encroaching stillness.  I am dying, and I am glad, for Ash is already dead, and it will all be over soon.”

I will quickly say that while there are some very, very dark moments in Deerskin, it has been one of my two favorite books for well over a decade.  Where there is darkness, the light shines more brightly, as in the case with this book.

Inspiration part 2 came, as I stated, from a short story Peter S. Beagle wrote called Come Lady Death.  In it, the grand Lady Neville, famous for her grand, opulent balls, has grown bored with her own parties.  In looking for a way to up the excitement factor, she decides to invite Death to her next party.  An invitation is sent out… and a positive reply comes quickly.  The guests nervously await Death, wondering what he’ll look like and are surprised when “a lovely young girl in a white dress stepped gracefully into the ballroom doorway and stood there smiling.

She could not have been more than nineteen.  Her hair was yellow, and she wore it long.  It fell thickly upon her bare shoulders that gleamed warmly through it, two limestone islands rising out of a dark golden sea…  She smiled, and Lady Neville tried to smile back, but her mouth seemed stiff.  ‘Welcome,’ she said.  ‘Welcome, my lady Death.’

A sigh rustled among the lords and ladies as the girl took the old woman’s hand and curtsied to her, sinking and rising in one motion, like a wave.  ‘You are Lady Neville,’ she said.  ‘Thank you so much for inviting me.’  Her accent was as faint and almost familiar as her perfume.”

While the two stories don’t seem to have a lot in common on the surface, and especially not in the small fragments you’ve seen here, there were a couple main points I took away from them both.  Death was a being or person who was a) not frightening in appearance b) not male,  as expected, and c) more warm and welcoming than anything else.  This fits in nicely with my own views on death and the afterlife.  Everyone has their own thoughts and views on the subject, which is fine, but I don’t view either as a scary thing, nor the end.  Of course, we grieve when death separates us from those we love, but I know that I will be reunited with them some day.  I suspect that the first batch of “people” I’ll see when I pass the threshold to heaven will be a menagerie of furry, feathered, barking, purring, squeaking, singing creatures I have loved 😉

Drawing from all these sources, Lady Death emerged in my head.  She should be warm, inviting, welcoming, maternal.  She should not be frightening, but soothing.  She should be connected with nature, because death is a natural part of life.  Her clothing would be dark, but there would be no black allowed anywhere in her costume.  And most importantly, when you look into her eyes, you need to know that all is well, all was well, and all would forever be well.  I knew I needed to bring my dear friend and mostly-retired model Aly Darling into this image to embody all these qualities.

What should Lady Death’s clothing look like?  The story Come, Lady Death is set in a slightly unspecific time; several hundred years ago at least.  People throw balls, wear gorgeous gowns, ride in carriages… it brings to mind the 17th-18th century for me, though I have not confirmed this with Peter Beagle to see if that was his intention.  I didn’t want to make her clothing especially period-specific, but it definitely needed to have an old-fashioned feel to it.  How silly would it look if Lady Death was wearing the latest looks from this season’s runways?  I settled on a semi-Victorian feel, which felt both old-fashioned and classic at the same time.

Since I wanted to stay far away from the typical associations with the standard Death figure, black was not allowed anywhere in her costume.  I chose a beautiful purple dress with bell sleeves (purchased on Ebay for a few dollars) and went to work creating a cape for her out of some gorgeous teal satin I found.

I based the construction of the cape off of an actual Victorian cape I own (also purchased through Ebay, but as a wrap at my wedding, not for a costume).

Victorian cape draped over a laundry basket so I could assess its shape and drape.  Note the multiple layers of ruffles around the collar.

I reverse engineered a pattern from the cape and cut the pieces out of the teal satin.  I gave my cape several ruffled layers of fabric around the collar also, which were then copiously covered in flowers, each one hand-glued in place.  I spent months slowly gathering the appropriately colored flowers in the amount I needed.  Many of these were repurposed from previous DreamWorld costumes, like Perennial Parasol, Efflorescence and In The Lilac Wood, but this will be their final spot.  I love the costume too much to take it apart!  But I have to say, Icertainly got my money’s worth from the flowers!

Lady Death cape from start to finish, complete with flower-festooned collars

 

Next came construction of Lady Death’s bonnet.  I didn’t want her to have the standard hooded cloak, but I liked the idea of having her face framed in the way a cloak hood would.  Given the Victorian-ish look I was going for, I built a bonnet somewhere in between a Regency bonnet and a Victorian one.  When it’s your world, you get to pick and choose clothing details you like and use them however you want!

The base of the bonnet was some sheets of cardstock glued together into the general shape I wanted.  I tried it on a few times and refined the shape.  Next, I used spray adhesive to glue the teal satin to one side of the bonnet.  This ended up leaving unexpected streaks of glue when dried (see the photo in the lower left corner below) so I quickly decided that side was the inside of the bonnet.  I used a regular glue gun to edge the satin to the other side of the cardstock and the hem on the underside.  I happened to have a small amount of very sparkly purple mesh which I added to the inside of the bonnet.  This had the dual benefit of covering the glue streaks and adding some dimension and light within the darkness of the bonnet’s underside.

Bonnet construction

 

Next came the fun and slightly tedious task of decking out the bonnet!  Multiple layers of ribbons, trims and flowers were added to it.  And because someone already asked this, yes, I did glue those teeny tiny individual little flowers to the top and underside of the brim one by one.  I was not excited to do that, but it was well worth it.  You can see Maynard wanting to help in the last couple photos.  A beautiful, wide, dark blue satin ribbon finished the bonnet off and looked beautiful tied under Aly’s chin!

Bonnet decorating – Maynard offering to help

 

I seem to have not taken any images of the staff construction, sorry about that.  I must have been rushed.  I’ll tell you about it though, it was pretty easy.  With the abundance of sticks of all sizes within my yard, I found a good staff-sized one.  I spray painted it a dark brown and kissed it gently with some metallic bronze spray paint.  I already had a string of small, battery-operated LEDs which I’d stuck through the middle of some small flowers.  The LEDs and flowers were taped rather roughly to the staff with masking tape, which I knew I could edit out later.  I knew it would add work in post, but it seemed the best solution at the time.

The bird skeleton is an actual bird skeleton and was incredibly delicate to work with.  I tried to be reverent and ask the bird’s spirit for permission to use it before I did, and so far the house doesn’t seem to be haunted by any bird ghosts, so I’m hoping that means the bird was ok with my use of it.  It was attached using a mixture of masking tape and fine wire.  I made a small wreath for it with the same tiny purple flowers I’d edged the bonnet with to take away a little of the creepy factor of a bird skeleton while also tying it in more directly with the overall costume.

Bird skeleton

Since Aly and I both have health problems and don’t live especially near each other, it took a while for us to find a time when we could actually shoot this image.  Eventually though, the stars aligned and everything went perfectly!  I absolutely loved the images straight out of camera and knew they wouldn’t need much editing.  However, I forgot to take detail shots of the costume while it was on Aly… so Calantha came to the rescue!  She actually enjoys it when I dress her up since she knows it means copious praise and treats.

Calantha modeling Lady Death’s cape

You can see how little she cares about the cape, she didn’t even move after I draped in on her.  She didn’t like the bonnet when it flopped over her face and couldn’t see, but as long as I kept it adjusted, she was really pretty cool about it.

Such a pretty girl! She looks right at home in it.

Calantha models the bonnet, showing off the details you can’t see so well in the finished image

After all that, let’s check out the final image!  Scroll down for detail shots 🙂

Lady Death © Sarah Allegra

Lady Death © Sarah Allegra – detail

Lady Death © Sarah Allegra – detail

 

Lady Death © Sarah Allegra – detail

Lady Death © Sarah Allegra – detail

Lady Death © Sarah Allegra – detail

That closeup of Lady Death’s face makes the whole image for me.  The gentleness, the kindness, the love shining out of her face shows exactly who the character is.  Thank you very much to Aly for portraying her so perfectly, and to Calantha for modeling the costume after the shoot 🙂

Thanks to you for reading!  What do you guys think about the afterlife?  Would you find it comforting to find Lady Death escorting you to the rest of eternity?

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A Dropped Strand

***Spoilers ahead for anyone who hasn’t seen the first season of Boardwalk Empire!***

Keep reading to see an animated gif showing the whole editing process I used to create this image!  Many thanks to Handy Andy Pandy for imparting his knowledge of gifs upon me!

You guys all know I LOOOOVE me some Boardwalk Empire.  Or, at least, I did, up until last season’s finale.  I’m trying to work up to forgiving the show for its horrible end before the final season starts this fall, but I’ve got a ways to go.

I had to completely put the show out of my mind for a long time but I’ve started dipping my toe back into that intoxicating water.  As I was starting the whole series over again (for the manyth time) a new character caught my eye in a way she hadn’t before: Pearl.

Pearl

Played expertly by Emily Meade (currently on The Leftovers, also on HBO), Pearl is a prostitute at The Four Deuces in Chicago, which is where Jimmy retreats into hiding until heat from a botched robbery he and Al Capone attempted dies down.  She and Jimmy hit it off right away and form a quick, if somewhat odd, couple, shyly getting to know each other.

Jimmy’s ear is hurt after Al fires a gun right next to his head as a joke (seriously, who doesn’t fire dangerous weapons at their friends heads now and then?)  Pearl tries to fix him up and suggests he take opium for the pain; “It’s divine, it really is, for whatever ails you.”  Jimmy turns the offer down and the begin talking about their pasts.

Pearl, it turns out, is from Star Prairie, Wisconsin, a very small town where “Grampa was the first white man born in town, Pa was the first man got sent to state prison and Ma was the first woman run over flat by a car.  So you could say I have a lot to live up to.”

She tells Jimmy of her plan to head west to Hollywood and become an actress as soon as she saves up enough money.  Half-jokingly, she tells Jimmy he can come with her if he wants to, which he agrees to, and you can see that there’s a real affection growing between them.

But we all know, no one on Boardwalk gets to be happy for long.

Shortly after, Pearl finds herself being used as a means of sending Jimmy a message.  She had nothing to do with any of the reasons these men want to hurt Jimmy, she’s just caught in the ugly crossfire… and it costs her her face.  Warning for the squeamish, this is a bit brutal.

 

You have to think that with what little we know of her past and the fact that she’s a prostitute, life hasn’t been especially kind to this poor girl.  Not only are her acting dreams shattered, but even prostitution is taken away from her.  Jimmy feels responsible for her condition and tries to take care of her.  The Four Deuces wants to kick her out as soon as she stops making money, but Jimmy delays them.  Her face is stitched and bandaged and Jimmy spends a lot of time squeezing oranges into juice for her to take her opium in.

Despite her opium haze, Pearl realizes that her future has been erased.  At one point, she forlornly asks Jimmy who will love her now?  We wonder what this poor girl will do, but she’s quite calm and collected; she seems to have it figured out.  While Jimmy is caring for her, she asks him to tell her a story.

I can’t blame Pearl for feeling that was her only option.  Life had been quite unkind to her.  She deserved much more, but I’m glad that she at least had a few beautiful moments with Jimmy before she left.

But, much as no one on Boardwalk stays happy for long, no one stays unavenged for long either.

Unknown to Liam, the face slasher, Jimmy has just met Richard Harrow, the World War One sharp shooter.  At their first meeting, Richard tells Jimmy the story of how he once stayed three days in a blind, waiting for the single moment when he could kill a German shooter, finally taking him out with one shot below his right eye.  Jimmy has a soft spot for the lonely and lost and accepts Richard readily into his life.  And they concoct a plan.

While Pearl’s death is tragic, it is the catalyst for Jimmy and Richard’s friendship, which continues for the rest of the series.  If Jimmy hadn’t needed someone to help him extract revenge upon Liam, who knows what would have become of their relationship, and who knows how it would have changed Richard’s involvement in the show?  We might have never met the man who would become one of my favorite characters on all of television.

With a new appreciation for Pearl’s character, I felt like creating an image in her memory.  And I have to say, I was very proud of myself for how little time it took me to transform myself into a Pearl-like girl; maybe 15 minutes.  If I had more energy on a daily basis, I would certainly try and bring more of the 20’s style to my daily look!  As things stand, I will have to be content with just dressing myself and either putting my hair in a ponytail or hiding it under a hat.  But maybe some day…  🙂

Geoff was very kind and helped be my human shutter release for these self portraits.  Byron helped by photobombing as often as he could.  All said, this was a quick and easy shoot and editing it was quite a delight.  My friend Robert Cornelius helped me figure out how to add the tears to the photo later, which I’d forgotten to do at the time of the shoot.  Thanks, Robert!

Please enjoy the finished image and the detail shot where you can really see the tears!  Also, HUGE thanks to Andy for showing me how to create the animated gif below!  It’s a great way to show you guys the whole creation of the image in a fun way.  I’m hoping to do more of these now that I’ve got one under my belt!

Tell Me A Happy Story

 

Tell Me A Happy Story – detail

 

Watch the creation of this image from start to finish!

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Skin and Bones

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 – 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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Singed Wings: The Granite Mountain Hotshots Tribute

“A wall of flames 40 feet high was sweeping its way up the canyon, 400 yards away. At that point, they would have had about a minute. Since they couldn’t get to the safety zone, they had to make one of their own. Andrew Ashcraft and Travis Turbyfill, the two sawyers, started attacking the brush with their chain saws, while the rest of the guys swung their Pulaskis, frantically doing what they were trained to do: move dirt, and move dirt faster.  They dumped fuel from their drip cans around the zone they’d created, then set the chain saws at the outer perimeter, so that when they exploded no one would get hurt.

[The team’s leader,] Eric, got on the radio. The Hotshots’ escape route had been cut off, he said, and they were deploying their emergency shelters.

Eric’s voice was calm – some said the calmest they’d ever heard him. At 4:47, he radioed his last transmission: ‘Deploying.’ And then, just like they’d practiced, the Granite Mountain Hotshots climbed into their shelters.

Finally, at 6:30 – an agonizing 103 minutes later – the helicopter was able to get on the ground. The onboard medic hurried to the site where they’d seen the shelters. As he approached, he spotted the metal blade from a chain saw and a pickax with the handle burned away. The ranch house was unscathed. Everything else was a smoldering moonscape.

Experts estimate that the fire burned between 3,000 and 5,000 degrees. In the end, there wasn’t much left. But what there was told a story.

The 19 Hotshots were all together. No one panicked, no one ran. Travis Turbyfill and Andrew Ashcraft, the sawyers, were at the edge of the group, closest to the flames. They were cutting lines up until the end.

When Juliann [ed – Andrew’s wife] got Andrew’s effects back, his boots and clothes were gone. His metal belt buckle didn’t make it. His pocketknife. The journals that he kept. There was a piece of Velcro from his watchband but not the watch itself. Even the metal plate and eight screws in his leg, from when he shattered it in a rappelling accident a few years back, had disappeared.

Two things, she discovered, had somehow survived the fire. One was Andrew’s wedding ring, titanium. The other, shrunken and black, was the rubber wristband that said: be better.”

–Excerpt from an excellent and comprehensive article The Last Battle of the Granite Mountain Hotshots, by Josh Eells, for Men’s Journal.

 

Singed Wings – detail

I initially created today’s image to be a companion piece for this photo of Katie and I, honoring the fallen firemen in Yarnell, Arizona almost a year ago.

To The Lost

A childhood friend of mine, Andrew Ashcraft, had been one of the lost.  As I do with most painful things, I channeled my grief into my art.

Though it always makes me cry to think about it, there is such beauty in the men’s calm acceptance of their sacrifice, their solidarity, that they were a complete, solid unit until the very end. Josh Eell’s article says it so wonderfully.  They stuck together.  In the face of immediate, certain death, they did what they could and then turned to each other for comfort.  Shoulder to shoulder, they stuck together until the horrific last.

That unity, that love, that solidarity and bravery touched me more deeply than I could, or can, express.  The only chance I had at touching on it was through art.  I set up a shoot with Katie and Bryce to portray the doomed but brave men.  It happened that some tree branches and very tall bushes in my yard had just been cut down, forming what appeared to be a huge, natural nest.  Thinking of the Hotshots as birds with broken, burned wings helped me find the metaphor I wanted to use, a way into the truth I was trying to get at.

It was an easy shoot, what with all the branches having been set up for me by the workmen.  I lit a few smoke bombs, snapped the frames and it was done.  I loved what I had gotten from this shoot as I looked at the images later.  All the same, I found I couldn’t face editing the image.  It took many, many months before I felt like I could emotionally handle editing working it up.

I didn’t consciously realize we were coming up on the anniversary of their deaths, but I must have felt it subconsciously.  I’ve been haunted by memories of Andrew recently and finally felt that it was time, urgently time, to finish this piece.  As I finally brought the files into Photoshop and started working on them, more memories flooded my brain.  Like how Andrew, as a young child, had always said “Jee Jie Joes” instead of “GI Joes” and frequently got tripped up between “brought” and “brung.”  The trip our families took to Mount Shasta together.  Their shelties, who seem huge in my mind, but who I know were actually smallish dogs.  Drawing together, playing in the sprinklers, going to the beach, sharing snacks, going to the park, getting into fights, crying and making up again… all the things children do.

I’ve said before that one of the things I mourn in this is that I missed out on getting to know Andrew as an adult.  I’ve tried to remember that lesson and have made a point to stay in touch, or get back in touch, with people in my life.  I won’t get another chance at Andrew, but I can try and apply the lesson to other friendships.

None of these men deserved their fate.  They were true heroes, actively running into the worst, most dangerous situations.  That is what the Hotshots were there for; an elite team of firefighters comparable to Navy Seals or Spartans.  The only thing I can try and do about it is make an attempt to honor them and their sacrifice.  I know that I will always fall short in this goal, but it’s important to try nonetheless.  I am also keenly aware that this is not about me or my pain.  The pain of Andrew’s family and loved ones is something I can only imagine.

The Hotshots were trapped; birds unable to fly away.  There was no escape from the flames.  But what remained was love. Love triumphing over the flames by preserving Andrew’s wedding ring and bracelet with his personal motto.  Love for the people they were protecting, though they would never meet them.  Love for their families, though they left them behind in the line of their duty.  Love for each other.  Love for humanity.  Just love.

That love is what I wanted most to capture in this image and I hope it shines through.

Singed Wings

Singed Wings – detail

Singed Wings – detail
One of the three smokey roses scattered through the photo. I used a photo I had taken of beautifully carved roses on a tombstone, which felt so fitting. The delicacy and beauty they add are still tinged with sorrow.

Singed Wings – detail

Singed Wings – detail

My heart goes out to the family and friends of all 19 fallen heroes especially as we approach the anniversary of this tragedy.  I’m sure it’s an extremely difficult time for all of them.

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Blackfish Momentum

Blackfish.  The documentary about captive whales that will break your heart and move you to action.

By now, you all have probably read my open letter to Jack Hanna.  You probably saw Concrete Cell, the first of a short series of underwater photos inspired by the film.  As I do, I turned to art to help me express my thoughts.  I’ve just completed the last two photos for the series, and I’d like to share them with you here.

I set up an underwater shoot with Katie, with the intention to create something inspired by Blackfish.  Something sad and cold, that touched on the tragedy of the film.  Something that would help me work through the troubling emotions the movie had brought up, and lessen my feeling of helplessness about the plight of the whales.

It was a great shoot.  We captured everything we wanted, my camera behaved itself, and even the sudden appearance of gardeners tending to the yard around the pool was just another story to laugh about.  As she often does, Katie seemed to instantly understand what it was I wanted to express and needed very little direction.  My new wetsuit worked wonders and even though I still hated being wet at all, at least this time I wasn’t a purple, shaking mess by the time the shoot was done.

Editing the photos was another matter.  Having to visit such an emotionally dark place whenever I worked on them was not easy.  I had to take breaks and work on lighter photos.  But I’m proud of myself for sticking it out; doing what I felt I needed to do despite the difficulty of it.

In the first photo, we wanted to recreate Tilikum’s misery in this iconic photo of him, taken by Colleen Gorman, languishing alone in his solitary confinement.

Photo by Colleen Gorman; click on the photo to be taken to her excellent article on her blog The Orca Project detailing his miserable existence.

The second photo is an impression of the anguish of all the captive dolphins and whales and a memorial to all their deaths.

As this year draws to an end, I can’t help but think of what a huge impact Blackfish has already had on society.  It was only shown on CNN in October of this year.  The backlash against SeaWorld and its supporters has been immense.  Sponsors have fled, popular bands have refused to perform there.  Petitions of every kind are circulating, making demands.  Change is coming.  But it cannot come fast enough.

It’s easy to feel helpless to bring big change about.  We are all only one person after all; one drop amidst a great ocean of people.  But, as they say in Cloud Atlas, what is an ocean but a multitude of drops?

I want my drop to fall on the side of animal rights.  And I hope that 2014 brings about the ocean of change that has already begun.  I believe it can happen 🙂

Lifeless Life

A Drop Of Blood

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7 Richard Harrow Spin-Offs The Boardwalk Empire Writers Never Considered

WARNING: this post contains major plot spoilers from the last season of Boardwalk Empire.  Turn back now if you haven’t seen it all!!

*******

My regular blog readers will know that Jack Huston’s “Richard Harrow” is my absolute favorite character on BOARDWALK EMPIRE.  And I was in disbelief when Richard died last week in the fourth season finale.

I recently read a quote from Huston that the writers killed off Richard because there was nowhere left to take the role.  I disagree. Did they for a moment even consider a Richard spin-off?  For example….

1. THE FACTS OF RICHARD

Richard becomes the house mother to a group of precocious boarding school girls.  Just imagine Richard guiding them through boy troubles or explaining the beauty of their first period.  “I’ve shot.  A lot of people.  But none of them ever took seven days.  To bleed out.” he would say in the stop-and-go cadence of his gravelly, yet reassuring, voice.

“Don’t let those boys. Pressure you into anything. You don’t want to do. If they do. I’ll kill their mother and sisters.  To draw them out.  Then I’ll kill them.“

2. RICHARD AND SHIRLEY

Richard moves to Milwaukee to work at a beer bottling plant… even though it’s still Prohibition.  There he meets a spunky roommate and moves into a basement apartment where he sews a giant “R” on each of his shirts, when not working on his scrapbook.

“Schlemiel!  Schlimazel!  Hasenpfeffer.  Incorporated!”

RICHARD AND SHIRLEY

3. RICHARD

Radio is becoming a big thing in 1924 and Richard is leading the pack.  He moves to Seattle and uses his raspy, soothing voice to dispense homespun psychiatric advice to people contacting him through the equally on-the-rise technology of the telephone:  “Your husband doesn’t.  Understand you?  Have you ever considered.  Shooting him in the face?  I once waited three days.  To shoot a German sniper.”

“I’ve been told that.  My voice is very.  Soothing.“

4. RICH

Richard leaves his friends behind and moves to Hollywood to pursue his dream of being in silent pictures.  However, once they realize how limiting it is to only be able to film the right side of his face, the spin-off is cancelled after three episodes…which means it lasted just a little longer than JOEY.

“How you. Doin’?“

6. HARROW

Richard moves to a small New England town where he opens a bed and breakfast, surrounded by a colorful cast of characters.  In the last episode, he wakes up in bed next to Nucky Thompson and realizes it was all just a beautiful dream.

“Nucky, I had. The strangest dream.”

7. RICHARD LOVES CHACHI

Is musical success in the cards for Richard when he and Chachi move to Chicago to start a band?  In spite of Richard’s angelic singing voice, the answer is, sadly, no.

It’s just as well.  Chicago is Al Capone’s territory anyway.

“Chachi, you’re. The love of my life.“

Come on, BOARDWALK writers.  Surely you could think of more gold to mine from such a rich, complex and utterly unique character!  In a spirit of hopefulness, I’ll leave you with my photo Cote of Arms.  This particular photo was inspired by BOARDWALK; Katie and I dressed up in vintage lingerie and pretended to be poor, cold, soiled doves from the show’s era.  Despite the bad situation they seem to be in, I see hope in it, and that they will take care of each other.  So I’ll hope that the writers will come to their senses and we’ll find out next season that Richard wasn’t really dead.

Though I ran it back and looked really close…and he wasn’t breathing.

Cote of Arms

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My Top 5 Silver Linings Of Chronic Illness

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

 

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

 

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

 

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

 

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

 

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.

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