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! ❤

Read Full Post »

The Yellow Mythos – 5 Reasons Why True Detective Was The Best Show This Year

***WARNING: this post will contain spoilers for this season of True Detective.  Turn back now, ye who have not seen it.***

There.  With the formalities out of the way, we can settle in and chat 🙂

I don’t believe I have ever witnessed such a frenzied, overwhelming reaction to a television show in such a short amount of time.  True Detective was only eight episodes long.  I knew, for myself, that I was going to be completely obsessed with it by the second episode; I warned Geoff about it and that I was going to have to buy it on DVD the very moment it came out.  You all probably know by now how I tend to obsess over things.

For anyone unfamiliar with True Detective, it is an eight-episode series which recently ran on HBO.  It tells the story of Woody Harrelson and Matthew McConaughey, two detectives who are partnered together to solve a serial killer murder mystery.  The show jumps around from 1995, when they believe they solved the crime, and 2012, when it rapidly becomes obvious that something is amiss; the killer was not apprehended after all.

What impressed me so much was how strongly the entire internet reacted to the show.  Within those same short, first few weeks the internet exploded with True Detective interest, and by the finale, the fervor was so high that fans streaming the episode through HBO GO crashed the network’s servers.  This is the kind of rabid loyalty that usually takes years to build up, like with Breaking Bad, for example.  Both shows completely deserved the devotion given to them, but it intrigues me that True Detective was able to accomplish this in a mere eight weeks.  What is so different about this show?

Like the very best art, it’s extremely difficult to parse out exactly what makes it so special.  True Detective was pure magic, and I don’t believe it’s something that can be distilled down to a formula and repeated endlessly.  But I’m still going to take a stab at defining what I think people, including myself, are responding to so strongly.

1.  Relateable, real, unique characters.  Marty Hart and Rust Cohle, played by Woody Harrelson and Matthew McConaughey respectively, are fascinating.  They are fully realized, flawed, broken men but they still try to do good and make a difference in the world.  Whether you’re more of a Hart or a Cohle (guess which one I am – HAH), you’ll find someone to identify with.

These men both deserve Emmys and any and all awards given out to television performances for their acting.  To be honest, I’d never really gotten Matthew McConnaughey before.  True Detective completely changed my opinion of him; I was absolutely blown away.  Woody Harrelson is, of course, spectacular as well, but I went in expecting to enjoy his work.  McConnaughey’s jaw-dropping performance in scene after scene was a revelation to me.

2.  A script which treats its audience with respect.  You will not be talked down to here.  There is no spoon-feeding of the audience.  You are expected to pay attention and remember clues dropped in one episode and discovered in another.  Nothing has been dumbed-down and it’s incredibly refreshing.  I want my shows to challenge me, to engage me, to literally take me on a journey.  True Detective does all that and more.

3.  Myth and metaphor.  If you’ve seen any of the series, you’ve probably already read about how much of it was inspired by Robert W. Chambers’ 1895 classic work The King In Yellow.  The King In Yellow is a collection of short stories about a fictional play within the stories by the same name.  The first act of the made-up play is safe but it lures you into reading the second act.  Anyone who reads even a few words of the second act is shown such horrific truths about the universe that they’re driven insane.  Carcosa, The Yellow King, masks (both literal and metaphoric, masking who you truly are), black stars, the sign of the Yellow King, truth about the world bringing on madness, it all stems from The King In Yellow.  This is the kind of thing that really excites me.  And yes, I did read the entire King In Yellow between episodes just enhance my viewing pleasure.  This is the kind of loyalty the show inspires.  While it is certainly possible to watch the show and enjoy it without having delved into hundred-year-old, obscure literature, you want to for True Detective.

I have always been a proponent of the power of myth and metaphor.  Its something that I try to use as often as possible in my own work.  They are an incredibly strong force, which is rarely drawn on in television; certainly not to this degree.

Take the detectives’ names.  Marty (Martin) Hart and Rust (Rustin) Cohle.  Marty; the warm, personable, passionate, fiery, family-man-with-something-on-the-side.  Martin is derived from Mars, Roman god of war and means “warring.”  “Warring,” whether against the killer he hunts or the banalities of daily life, and “heart” are two perfect words to sum Marty up.   “Rust” and “coal” are perfect expressions of Rustin Cohle; bleak, nihilistic and emotionless.  Rust only occurs on metal, an element which is the perfect metaphor for Rust, cold and strong, but wounded, and we watch him disintegrate a little bit at a time.  Coal… I can think of nothing better to describe Rust’s heart after his young daughter’s death, which sent him down this path of meaninglessness and hopelessness.  But like real coal, there is the potential to change into something utterly different and glitteringly beautiful.

The more you pay attention to the show, the more subtleties you pick up on.  Pay attention to how the color yellow is used, for example.  Scenes that have the most to do with the killer are the most yellow.  When Rust makes Marty view the VHS tape of Marie Fontenot’s murder, not only is the whole screen is saturated in yellow, it’s a clear metaphor for Marty having read the “second act.”  And after you’ve read the second act, there is no going back.  Things can never be the same.

Myth and metaphor are so cleverly and generously used, I could go on for pages about it, but you get the idea.  I think you’ll have more fun if you watch the show and try to pick out the references yourself 🙂

4.  A beautifully shot piece of art.  Not to mention interestingly shot.  Incredibly complicated, gun-fighting, fist-fighting, dozens-of-extras, police-cars-and-helicopters, lifting-the-camera-man-over-a-fence-with-a-crane, six-minute-without-a-cut scene, anyone?

I also love how the show uses classic noir and literature traits, like showing peoples’ reactions to horror instead of the horror itself.  It’s an underused and extremely effective method of story-telling, not to mention underscores the mysterious tone of the entire show.

5. Healing and redemption – and the twist-within-a-twist ending.  You expect, this being a show about two detectives solving a crime, even though by now you know you’ll see something more than that, that the show will end on a climax of Marty and Rust catching the killer.  And they do catch their killer…  who ends up being at once creepier and more ordinary than you had expected the grand Yellow King to be, which feels like a very authentic picture of actual murderers.  Twist one.  Marty and Rust catch their Yellow King about halfway through the last episode, giving them almost another 30 minutes to fill.  Why would they need the extra time, you wonder.  To finish the story.  To really finish the real story.

What’s the real story?  As Rust says, it’s the oldest story, of light verses darkness.  Not just in the grander sense of of Marty and Rust catching their man, but of them facing the darknesses within their own lives.  For Marty, this means seeing the family he destroyed years ago with his multiple affairs.  And while things are far from all forgiven and forgotten, the show makes it clear that the fact that his ex-wife and daughters are even in the same room with him is a huge hurdle to have crossed.  Marty is not ok.  His family is not ok.  But now, finally, things can begin to heal and just maybe, they will be ok some day.

And then there’s Rust.  Rust, who began to withdraw from the world years and years ago when his young daughter was suddenly killed.  Rust, who wants to hurry up and catch their man because his entire life has been “a circle of violence and degradation as long as I can remember” and he wants to end it as soon as his work is done.  You can’t blame him for feeling that way.  I think he expected he would die in the final confrontation with the killer, which very nearly did happen, but he finds himself alive still at the other end, after awakening from the coma his wounds put him in.  What’s left for our nihilistic, philosophical, misanthropic hero?

A lot, it turns out.  Our emotionless, cerebral, steely man, who I can remember smiling only once during the whole series, breaks down sobbing.  In his coma, he had a vision of the afterlife where he encountered his father’s and daughter’s spirits, and moreover, he encountered their love.  Love which continued beyond death.  Which wiped away any disappointments his father may have had for him in life, any guilt he may have felt over his daughter’s death.  He was wrapped in pure love, something he had never experienced before.

It profoundly effected him.  When Marty, looking up at the night sky observes that the dark seems to have a lot more territory, Rust responds with “Yeah, you’re right about that… But you’re looking at it wrong… Once, there was only dark.  If you ask me, the light’s winning.”

Twist two.  The entire show wasn’t about them catching the Yellow King.  The entire thing led up to this moment, when Marty and Rust are reconciled, the healing has begun, and Rust has his first moment of optimism.  Healing and redemption.  Light verses dark.  That’s what we’d been watching this whole time.

 

So how does my self portrait tie in?  In a lot of ways actually.  Most obviously, it’s a reference to the starry night Marty and Rust philosophize under, the hope and beauty they were able to find.  The yellow is obvious as well, and since purple is yellow’s complimentary color, that seemed like a good direction to go in.  What’s hard to see in the shrunken, internet-appropriate version of the image is how the yellow fabric is sliding off my face; the mask is coming off.  And most importantly,  I wanted to portray the optimism Rust found there at the very end.  Maybe life isn’t all shit and misery.  Maybe it’s full of beauty and wonder too.  I’ll do my part to try and make that second part more and more true.

The Light Is Winning

 

The Light Is Winning – detail

The Light Is Winning – detail

The Light Is Winning – detail

The Light Is Winning – detail

Read Full Post »

Magical Birds

Many years ago now. my good friend Alex sent me a mix CD of some of his favorite songs.   That CD worked its way into a very regular rotation of my driving music, and introduced me to many new artists who I have since grown to love.  One of those artists is Wax Mannequin, a Canadian, one-man, “strange-folk” musician wonder.  His music truly defies classification, and his lyrics have inspired many photos of mine already.

It was not surprising then when I found myself in the grip of inspiration listening to his new album, and Broken Friends in particular.  I will note that while the video faithfully produces the song, the accompanying video is remarkably inharmonious with the song, and I find it downright distracting.  But it does allow you to hear the beautiful music and words.

The lyrics are so deep, mysterious, and evocative that images immediately spring to mind whenever I listen to it.  Birds are, of course, nearly always present in these images, and the song has a healing feeling to me… the kind of healing that produces pain before it gets better (like cleaning a wound), but ultimately deep healing nonetheless.  I tried to reproduce a few of these with Katie recently, who completely got what I was trying to portray.  Very observant readers make recognize the white bird as an egret shot from my day at Bolsa Chica; in my opinion the most beautiful bird, hands down.

The lyrics we were paying closest attention to come at the end of the song:

There’s a white-hot bird shooting straight over everything

cutting clear through your body with its heart at your need

there’s a night sky bird settled there in the evening

you can sleep in her body, settle down now, settle down now settle down

And here are the photos with some detail shots!

White Hot Bird

White Hot Bird – detail

White Hot Bird – detail

White Hot Bird – detail

White Hot Bird – detail

Night Sky Bird

Night Sky Bird – detail

Night Sky Bird – detail

Read Full Post »