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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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Actually, they were available to download on the first, but I’m just posting about it now.  My neurologist changed my medication again which led to the longest string of migraines and general barfiness and feeling awful yet.  I’m just so glad I can edit again.  The lack of outlet was REALLY driving me crazy.

This will be a short post, I just wanted to let everyone know that they can now download Peter S. Beagle’s magnificent works to their Kindles and read them to their hearts content!  And, of course, that six of the said book covers proudly bear my images, which you can see below 🙂

Go get yourself one of these titles from the Amazon-exclusive release!  You’ll thank me profusely when you discover how magical Peter’s writing is.

I have to say that it’s magical, wonderful, fulfilling, surreal and fills me with overwhelming joy and gratitude that I and my art get to be a part of Peter’s art.  His work has had such a deep influence on my whole life in a way that I will never be able to properly put into words, but it is something I will cherish forever.  Thank you, Connor Cochran, for making this happen!!

Special thanks to Katie Johnson, Patrick Reid and Bryce Rankins for their modeling in these images!

Also, I wanted to let you all know what my friend and fellow spoonie Jessi has been up to!  While traditionally, she’s been a painter, her severe fibro symptoms are not allowing much of that right now.  Thankfully, she discovered that she can make jewelry even while laying in bed!  She just opened an Etsy shop filled with beautiful earrings, suitable for every day wear as well as special awareness ribbons and colors for various invisible illnesses.  Do stop by her shop and pick up a pair!  They’re very reasonably priced and make gorgeous gifts.  The holidays are almost upon us 🙂

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Before I get into this post, I wanted to again thank EVERYONE who prayed, lit candles, sent me good thoughts and energy about my battle on Wednesday.  I don’t have an answer yet, and most likely won’t for a while, but it did go quite a bit better than I was expecting.  I am guardedly hopeful for a successful outcome.  And regardless, I went in, faced a terrifying situation and did my best.  Whatever happens, I can take comfort in that.  So thank you all, from the bottom of my heart; I’m sure all that good energy truly helped.  For those inclined, I wouldn’t mind your continued blessings until I hear the outcome!  And I’ll try and let you know what the outcome is as soon as I can.

Now, on to this post!

Conlan Banner

I’ve had some exciting news that I’ve been quiet about for a while, but I can finally spill the beans today!  You guys all remember how I’ve been working with Connor Cochran from Conlan Press, publisher of Peter S. Beagle, one of my two literary heroes?  It’s all coming together 🙂

LILA THE WEREWOLF AND OTHER TALES by Peter S. Beagle. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text combines 6 classic Peter S. Beagle stories with 10 new ones collected here for the first time. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Click here to be taken to Amazon!

LILA THE WEREWOLF AND OTHER TALES by Peter S. Beagle. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text combines 6 classic Peter S. Beagle stories with 10 new ones collected here for the first time. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Click here to be taken to Amazon!

Amazon is releasing an exclusive bundle of 13 of Peter’s books, in e-book editions for the first time ever!  As of the time of this writing, you can go to Amazon and pre-order as many titles as you’d like!  They officially go on sale on November 1st, but you can make sure you’re first in line to get your digital hands on them.

THE LINE BETWEEN by Peter S. Beagle. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text of Peter's 2006 story collection. Cover photo by Sarah Allegra Ashley, processing and design by Connor Cochran. Model: Katie Johnson. Click here to be taken to Amazon!

THE LINE BETWEEN by Peter S. Beagle. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text of Peter’s 2006 story collection. Cover photo by Sarah Allegra Ashley, processing and design by Connor Cochran. Model: Katie Johnson. Click here to be taken to Amazon!

And, the most exciting part for me is that six of these shiny new e-books have my images on their covers!!

 MIRROR KINGDOMS: THE BEST OF PETER S. BEAGLE by Peter S. Beagle, stories selected by Jonathan Strahan. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text reprinting 2010 Subterranean Press limited-edition hardcover collection. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Click here to be taken to Amazon!


MIRROR KINGDOMS: THE BEST OF PETER S. BEAGLE by Peter S. Beagle, stories selected by Jonathan Strahan. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text reprinting 2010 Subterranean Press limited-edition hardcover collection. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Click here to be taken to Amazon!

This is so incredibly fulfilling and amazing to me!  I began creating images inspired by Peter’s work long before I’d ever met him or had any personal interaction with him.  I just genuinely LOVE his work and it made me want to create images based on how his writing made me feel.  It’s a little surreal to now have my work on his covers, but absolutely wonderful 🙂

 SMÉAGOL, DÉAGOL, AND BEAGLE: ESSAYS FROM THE HEADWATERS OF MY VOICE by Peter S. Beagle. 2015 Conlan Press ebook edition (Kindle exclusive). Brand-new nonfiction by Peter -- a collection of original essays exploring the roots of his own voice as a writer, and the people and works that have been his greatest influences. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Model: Bryce Rankins. Click here to be taken to Amazon!


SMÉAGOL, DÉAGOL, AND BEAGLE: ESSAYS FROM THE HEADWATERS OF MY VOICE by Peter S. Beagle. 2015 Conlan Press ebook edition (Kindle exclusive). Brand-new nonfiction by Peter — a collection of original essays exploring the roots of his own voice as a writer, and the people and works that have been his greatest influences. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Model: Bryce Rankins. Click here to be taken to Amazon!

So please click on any of the above images to be taken to Amazon where you can see what titles are being offered and pick up your favorite ones!  And if you’re new to Peter S. Beagle… well, you’re in for a BIG treat.

 SLEIGHT OF HAND by Peter S. Beagle. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text of Peter's 2011 story collection. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Click here to be taken to Amazon!


SLEIGHT OF HAND by Peter S. Beagle. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text of Peter’s 2011 story collection. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Click here to be taken to Amazon!

If you’re liking the idea of this but don’t own an e-reader, don’t worry.  New hardcover editions of these titles will be available in the near future and the plan so far is for at least most of the covers to remain the same.

WE NEVER TALK ABOUT MY BROTHER by Peter S. Beagle. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text of Peter's 2009 story collection. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Model: Patrick Reid. Click here to be taken to Amazon!

WE NEVER TALK ABOUT MY BROTHER by Peter S. Beagle. Conlan Press 2015 ebook edition (Kindle exclusive). Definitive author-approved text of Peter’s 2009 story collection. Cover photo by Sarah Allegra, processing and design by Connor Cochran. Model: Patrick Reid. Click here to be taken to Amazon!

Many, many thanks to Connor Cochran, Charlie Petit and Peter S. Beagle for choosing to use my images and working so hard to make the covers look so beautiful.  I am truly honored.  Thank all you, my dear readers and friends, for your support, any purchases you may make and extra special shout-out to Katie Johnson, Bryce Rankins and Patrick Reid for their modeling in their images!  We’re all on book covers!!

Did I mention I was excited about this?  🙂

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 This is a big piece for me, not just size-wise, but for what it represents as well.
Like A Storm © Sarah Allegra - detail

Like A Storm © Sarah Allegra – detail

I shot this self portrait a week or two ago after enduring months of worse-than-usual depression.  Some was due to outside influences, bad news, being sick and other things that any normal, healthy person would feel depressed about.  But a lot of it was that irrational, heavy, demanding, life-draining depression that is clinical depression.  This is not feeling sad about things that you should feel sad about.  This is round-the-clock, punishing joylessness, sucking the beauty out of everything, leaving all around you colorless and meaningless.  This is clinical depression.

 

I’ve battled this beast since it first started manifesting in my early teens.  It took me some time before I learned that what I was feeling was an actual condition, a potentially solvable problem, not just a bad mood that hung around for years.  I’ve also tried more remedied to it that I can recount; anti-depressants, therapy, energy work, supplements, yoga, getting more exercise (before I had ME; over-doing exercise now could do me great harm), self-help books, seminars, journaling, art therapy… on and on and on.

 

And it still clings.

 

I decided to start a series specifically addressing mental illness; clinical depression and anxiety in particular, since those are the two I fight with most.  I manage them, sometimes it’s better, sometimes it’s worse.  Sometimes I want to just die.  I don’t know if it will ever go away completely, thus the series title Eternal Storms.

 

I identify with Eeyore from Winnie  the Pooh, with his constant dark cloud covering just him.  I’m sure that was subconsciously part of the inspiration for this piece.  When I’m going through a bout of depression, this is what it feels like to me.  A dark storm raging round my head, that only I see and feel.  It makes the idea of asking for help feel pointless; even if I break up this cloud, another will come.  And the social stigma of admitting you need help at all, let alone help with your mental health, makes it all the worse.  If I’m having a week where I have to talk myself into continuing to live each day, I can’t talk about it except for a few select, very trusted friends who have also been there, as well as my therapist.

 

I shot this self portrait as a way to work through the cloud I was under, yes, but more importantly, to directly address depression and its stigma.  Admitting you have or struggle with depression doesn’t make you weak or unworthy.  It doesn’t make you a bad person.  It doesn’t mean you’re not trying hard enough, eating right or getting enough exercise.  It just IS.  And society needs to learn to stop judging those who do manage to ask for help.

 

The alternative is that we suffer in silence with our tormentor.  And that can kill.

 

Joel Robison happened to put up an insightful blog about his own battle with depression recently, which was a happy coincidence.  I’m very glad for people like him who will stand with me and admit that yes, we have depression.  It may not make sense to you, you may not understand it, it might *gasp* make you uncomfortable, but that doesn’t mean it will go away.We are no less human that you.  We did not ask for this fight.  This is not an attention-seeking behavior.  This is real, this illness is out for blood.  This is just our fight.  This matters.  And it can be won.One storm at a time.

This series is dedicated to all the others who fight this battle with me every day.  You are all so strong and so brave.  Don’t let anyone ever tell you otherwise.

Like A Storm © Sarah Allegra

Like A Storm © Sarah Allegra – click on the image to see it full-sized on my site!

Like A Storm © Sarah Allegra - detail

Like A Storm © Sarah Allegra – detail

 

Like A Storm © Sarah Allegra - details

Like A Storm © Sarah Allegra – details

Like A Storm © Sarah Allegra - detail

Like A Storm © Sarah Allegra – detail

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It’s that time of year when everyone with a blog is required to take a look at the previous year and take stock.  I like this tradition.  It gives you a sense of accomplishment for the things you’ve done and also brings to mind what still needs attention.

So what happened in 2013?  So much!

I signed a contract with Conlan Press, Peter S. Beagle’s publisher.  This has already brought some very exciting things about, and there are many, many more to come!

In The Lilac Wood

In The Lilac Wood

I created what I consider the first “real” DreamWorld piece.  By “real” I mean a full-fledged character was brought to life with costumes and props which took months to create and inventing new ways to bring about my vision on a shoe-string budget.  The inclusion of birds would also prove to be a frequently occurring theme in DreamWorld.

The Court Of The Dryad Queen

The Court Of The Dryad Queen

I got to photograph Lauren Cohen, aka Maggie from AMC’s The Walking Dead.  The image also kicked off a sub-series of DreamWorld portraying the various steps along the Hero’s Journey.

Crossing The First Threshold

Crossing The First Threshold

I also got to photograph Paul Telfer, known for his roles in NCIS, The Vampire Diaries and other roles that require buff-and-handsome men.  He perfectly portrayed the angelic kind of being you would want watching over you while you sleep.

Prayer For The Frail

Prayer For The Frail

This year also brought about a new, ongoing collaboration and friendship with actor/model Katie Johnson.  I could write an entire post about how wonderful it’s been to have Katie in my life, both for artistic reasons and personal ones.  I will leave it at two main points; that she is a spectacular model, equally skilled at following specific, minute directions as well as being let loose while I just try and keep up with her.  Her friendship, strength and grace have been a great boon this year, especially during some notable rough patches.  Thank you, Katie 🙂

Perennial Parasol

Perennial Parasol

One of those notable rough patches was learning about the tragic deaths of the 19 Hotshot firemen in Yarnell, Arizona this summer, and that one of them had been a childhood friend of mine.

To The Lost

To The Lost

In a somewhat similar vein, I took my passion for animal rights to a new level after watching the documentary Blackfish.  This also meant that I finally tackled underwater photography, which I’d been quite nervous about trying.

Concrete Cell

Concrete Cell

I wrote an open letter to Jack Hanna criticizing his continued support of SeaWorld after the Blackfish allegations, which became quite successful and even garnered the attention of celebrities such as British actor Stephen Fry.

Stephen Fry Tweet

Stephen Fry Tweet

Like DreamWorld, the set of Blackfish photos has set in motion a more all-encompassing series addressing animal rights in other areas.  More of that will come in 2014!

A Drop Of Blood

A Drop Of Blood

In championing human causes, I got to be a part of the Kickstarter campaign for the documentary Canary In A Coal Mine, in production, about myalgic encephalomyelitis, aka ME, previously known in the United States as Chronic Fatigue Syndrome/CFS.  The Kickstarter was an INCREDIBLE success, and we can look forward to seeing the film in late 2014 or early 2015!  I’m proud to have been a small part of the movement.  I also got to work a little more on my series on living with ME with the help of model/friend Aly Darling.

Martyrs To A Name

Martyrs To A Name

I visited a sheep farm to take photos of lambs and goats along with friends Katie and Brooke Shaden, to create a very personal portrait of my grandmother.  This particular lamb was appropriately named Too Cute 🙂

The Shepherdess

The Shepherdess

I had the pleasure of being interviewed on The Candid Frame, The Altadena Blog, and having some of my photos appear in the self-portrait how-to book, Shooting Yourself, by Haje Jan Kamps.

SP book all pages

I “celebrated” my 5-year anniversary with ME.  I’ve tried many new therapies this year to combat the ME, but with the exception of ART massage, it has gotten slowly worse and finally forced me to quit my day job.  In some ways this is a good thing, as my day job was doing my body no good at all, and it also means now I can concentrate fulltime on art.  But it’s also a bit frightening; will the ME get a little worse every year?  Will it level off now that I’m not pushing it trying to hold down a job?  There are many unknowns, which can be worse than knowing something bad will happen.  I try and keep a good attitude about things, but it’s also no good trying to simply ignore your fears.  They won’t go away, they’ll simply grow in the dark.

Vanity's Murder

Vanity’s Murder

This TED Talk sums up my fears, hopes and trials beautifully, and I would recommend it to anyone and everyone, especially any who struggle with depression.

I am still mourning Richard Harrow’s death (this was my light-hearted way of dealing with it) and I’m working on a photo to help work through those feelings.

On a happier note, I got to save a litter of opossum babies and was deeply moved by a beautiful new book.

But perhaps very best of all was getting to photograph author Peter S. Beagle, of The Last Unicorn fame, and bring him into DreamWorld as its King.  It was such a tremendous amount of work, but that just makes the resulting photos that much more meaningful.

Beloved Of The Crown

Beloved Of The Crown

A year ago, I never would have thought I’d find myself not only merely talking to Peter, but actually interacting with him, making a costume for him, and casting him as one of the most important characters of DreamWorld.

Aerie

Aerie

If that all happened in 2013, what will 2014 bring?  I am very excited to find out!

Christmas Eve

Here’s to a great new year!

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