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Posts Tagged ‘reality’

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

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!

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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I first met Dedeker Winston over four years ago, when I was just starting out as a photographer.

Yggdrasil - © Sarah Allegra

Yggdrasil – © Sarah Allegra

She was one of the first models I worked with and we clicked so well that we’ve been working together ever since.  She is one of my go-to models, one of the best and most reliable I have.

All Of Winter In A Day - © Sarah Allegra

All Of Winter In A Day – © Sarah Allegra

She instinctively understands what I’m wanting from a shoot and she delivers every time.  Of course, I adore my other models too, I have the best group of ladies and gents willing to pose for me, but this post is specifically about Dedeker.

Mark of Cain - © Sarah Allegra

Mark of Cain – © Sarah Allegra

Because, you see, Dedeker was chosen to be on Fox’s new reality show Utopia, which airs tonight.  Their sites describes the show’s premise well, so I’ll let them explain it:

La Belle Dame Sans Merci - © Sarah Allegra

La Belle Dame Sans Merci – © Sarah Allegra

“Behold UTOPIA, a bold new series based on the hit Dutch program. Watch what happens as 14 pioneering Americans wave goodbye to the lives they’ve known, move to a remote location, and set out to create a society from scratch. They’ve got limited supplies, wildly diverse backgrounds, and zero bathrooms.

What could go wrong — besides everything?

The Utopians will make every decision about how they live and work. Will they choose democracy or dictatorship? Capitalism or socialism? Fidelity or free love? Which religion, if any, will prevail? Will they punish or forgive? Keep or share?

Are those chickens friends….or food? If not now, when?

It is all up to them.

This is not a game. There is no prize. This is UTOPIA: reality TV in its truest form.”

Shades We Weave - © Sarah Allegra

Shades We Weave – © Sarah Allegra

It will certainly be interesting to watch how the show evolves.  And of course I’ll be watching to support my girl Dedeker 🙂

Wings For Marie - © Sarah Allegra

Wings For Marie – © Sarah Allegra

One of the unique qualities about the show is how long-running it’s intended to be; the contestants have to be willing to stay there for up to a year; perhaps even longer.  While no one is guaranteed to stay that long, it’s a possibility.  And I’ll admit, I was very sad to think about not having one of my favorite girls around to shoot spontaneously as the desire came up.

Alone In The Wilderness - © Sarah Allegra

Alone In The Wilderness – © Sarah Allegra

But I’m more interested in supporting Dedeker.  This sounds like a really unique opportunity for her and she’ll definitely come out with the story of a lifetime to tell!

Are You The Beast Again? - © Sarah Allegra

Are You The Beast Again? – © Sarah Allegra

So in the spirit of supporting her and promoting her being on the show, I decided to put together a post with some of my favorite Dedeker images from the last four years of partnership!

Potion - © Sarah Allegra

Potion – © Sarah Allegra

All of the Utopia contestants have their own catch phrase/tagline for lack of a better term.  Dedeker has been billed as the professionally-belly-dancing, polyamorous, nude model who has no fears of being naked – a trait I can personally attest to.  I have many images of her, both clothed and unclothed, but for the purpose of this post, I’m going to celebrate more of her nude work.

Water Birth

Water Birth – © Sarah Allegra

She is equally skilled at both kinds of modeling, even when it involves wearing hand-made, noxious-smelling, tea-dyed dresses, heavy crowns of branches which have to be strapped to her body to support them, with decorative ribbons biting into her flesh because her photographer was too busy focusing on other details and she was too much of a pro to complain.

The Court Of The Dryad Queen

The Court Of The Dryad Queen

Dedeker has been instrumental in the building of my most-beloved photography series, DreamWorld (my own Utopia, if you will).  She has portrayed countless characters, including dryads, oracles and deer-people to name a few.

Water For The Free - © Sarah Allegra

Water For The Free – © Sarah Allegra

The Oracle  - © Sarah Allegra

The Oracle – © Sarah Allegra

So good luck to all the Utopians!  But most of all to Dedeker 🙂

Coming Over Like A Storm - © Sarah Allegra

Coming Over Like A Storm – © Sarah Allegra

And De, let me know when you’re back so we can shoot again!!

Fledgling - © Sarah Allegra

Fledgling – © Sarah Allegra

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