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Posts Tagged ‘artists’

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 have VERY BIG, GOOD NEWS.  I’ve felt like bursting from holding it in!

Where Earth Meets The Sky, model Katie Johnson.  © Sarah Allegra

Where Earth Meets The Sky, model Katie Johnson. © Sarah Allegra

My work has been accepted into A Gallery!  A Gallery is a fantastic online gallery who represents some truly stellar other artists in whose company I am proud to be.  You might know of Christy Lee Rogers or Tyler Shields, who are both extraordinary and whose work I knew before I was to be shown alongside them.  One of the most giddy, fan-girl moments though was discovery A Gallery also represents Chris Parks whose work you will know if you’ve seen one of my very favorite movies ever; The Fountain.  That magical, swirly, organic background used in so many shots (especially in clouds of stars and gas in space) are his creation.

Chris Park's dreamy, swirly, organic creations in The Fountain

Chris Park’s dreamy, swirly, organic creations in The Fountain

Chris Park's dreamy, swirly, organic creations in The Fountain

Chris Park’s dreamy, swirly, organic creations in The Fountain

*Squealing, fan-girl hopping*

Ahem.  I am VERY happy to have found such a wonderful home for my art!  I’m thrilled to be working with A Gallery’s owner, Fraser Scott; it’s going to be a really great, long-lasting relationship for everyone involved!  I can’t wait to see what this brings!!  This feels like a really big accomplishment to have checked off my life’s to-do list… and yes, there was champagne when I checked it off 🙂

Vanity's Murder - © Sarah Allegra

Vanity’s Murder, a self portrait – © Sarah Allegra

**Please do take a look at my work on their site!  If you like something, buy it!  You deserve it 🙂  And you’ll be supporting an independent artist and a fantastic gallery at the same time!**

The Shepherdess - © Sarah Allegra

The Shepherdess, model Lucea Shipler, my grandmother! – © Sarah Allegra

When you purchase a print, you will receive one of my gorgeous, luscious, limited-edition, signed and numbered museum-quality prints, printed on the thickest, most delicious fine art paper.  I am going to be printing all my images on Hahnemuhle Fine Art Pearl Paper.  It’s almost like a watercolor paper and it picks up every tiny detail for your viewing pleasure!  As a wonderful bonus, the paper itself is ever-so-slightly shimmery, which truly adds a whole other depth to the images and enhances their magical, mythical feel.  It’s been a long time searching for exactly the right paper which would give me the lifetime of quality I want along with the subtle, fae-like touch of pearl, and this paper is it.  You really have to see it to understand how gorgeous it is

Fae Light - © Sarah Allegra

Fae Light, model Dedeker Winston – © Sarah Allegra

I have sung the praises of my printers, POV Evolving, before and I’ll say it once more.  They are not close to me.  Their location is somewhere between a hassle and a nightmare to get to, I can never go without getting a little lost coming or going, and it’s a big mental and physical drain to make the trip down.  I don’t care.  Their work is so fantastic, I do not care where they are, how long it takes, how snarly the traffic is; it’s completely worth it!  Lauren, who does my printing, is also a truly lovely person who makes the trip extra worthwhile by being so pleasant when you get there.  Pleasantness aside, POV just does astonishing work which will last a lifetime and more.  I have been told by clients who have my work hung in their homes, that when people come over and see my prints for the first time, there are often gasps.  I feel immodest saying that, but that really is the level of beauty you’ll be getting!

End Of Line - © Sarah Allegra

End Of Line, model Aly Darling – © Sarah Allegra

It feels truly wonderful to have found a home gallery run by such a great person who has a commitment to my work, an emphasis on working ethically with everyone, and being in the company of such immensely talented other artists!

A Drop Of Blood, © Sarah Allegra

A Drop Of Blood, model Katie Johnson © Sarah Allegra

I’ve scattered some of Fraser’s image choices through this post, but please take a look at which images he has selected for his prestigious gallery!  And if something strikes your fancy, feel free to purchase a print for yourself or a loved one!   🙂

Hope Of Heaven When Their Lives Ain't Lived - © Sarah Allegra

Hope Of Heaven When Their Lives Ain’t Lived, model Veronica Ricci – © Sarah Allegra

I will still be selling prints through my Etsy shop; either way you will be receiving the same, incredibly high-quality item!

Again Throughout Eternity - © Sarah Allegra

Again Throughout Eternity, model Sandy Moore – © Sarah Allegra

I should have some more good new to share soon, but in the mean time, feel free to join me in having a celebratory drink of your choosing!  Cheers!

3 Good Days

3 Good Days, a self portrait – © Sarah Allegra

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