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Posts Tagged ‘strength’

Let me start by saying that I’m sorry I can’t give you more actual details about what’s going on, but I’ve been advised to continue to keep them under wraps.  Those of you who follow me on social media have already heard that I’m going through a difficult time right now.  What I can tell you is that I am about to do something on the 14th which is absolutely terrifying to me and has incredible, life-altering implications.  For me, Geoff and the fur-kids.  And while I have lots of people (like all you dear, lovely folks reading this) who are loving and supporting me, it’s all going to come down to the words I speak and actions I take on the 14th.  I will be alone at the critical moment; the pressure feels crushing.

I feel like Louis Zamperini in the POW camp holding his wooden beam.  I feel like Aerin facing the giant dragon Mar.  I feel like the unicorn standing up to the Red Bull.  I feel like one of Leonidas’ 300.  Frodo off to Mordor.  Rosie and Pernicia.  Lissar and her father.  You get the idea.

One small, anxious girl going up against something far, far bigger than she is; ill-equipped for the job.  The higher the pressure, the more my brain feels scattered and forgets important details.  And it’s crucial that I remember everything, no notes allowed.  The outcome of this will have a huge impact on my financial state, which is currently pitiful.  I need this win.

To say this has been stressful would be a huge understatement.  This sincerely feels like one of the single hardest, most frightening thing I have ever had to do.  But there’s no getting around it, I HAVE to do it.  And I will do my best.

The stress is causing giant waves of discord through my body, mind and soul; causing mayhem and destruction.  For weeks now, every night, I either have stress dreams or I dream that I’m dying… the dying ones are the worst because, in my dream, it’s wonderful, beautiful, the most peaceful, joyful thing I’ve ever experienced.  And then I wake up and remember real life and it feels like a glorious gift has been snatched from my hands while the weight of life crushes down upon me again.

Despite numerous antacids of all kinds, I’m having persistent heartburn, often in the middle of the night.  My pain levels are all elevated.  And as you can imagine, my sleep is suffering in quantity and quality.

I’m not writing about this to simply throw myself a pity party.  I am asking for your support.  If you pray, please pray for a quick and overwhelmingly successful outcome.  If you do Reiki, please send as much as you can.  If you light candles, please light one for me.  Please send all the love, good thoughts and energy that you can spare, whatever your system of faith may or may not be.  I will gladly take it all!

I am determined to win this battle.  And while it traditionally takes a while to hear about the exact outcome from the fight, I am equally determined to get an overwhelmingly positive answer, right then and there.  I am visualizing myself being victorious.  As much as I am afraid, I am doing my best to catch myself when I start to go into a spiral of worry over what will happen if I fail.  When I notice those thoughts, I actively change my vision of the future to one that I want.  I don’t need to open myself up to attracting any negative energy!

One thing about all the metaphors I listed a few paragraphs ago; despite the odds, they all succeeded.  Thinking about others who have overcome incredible trials is deeply comforting to me.  If they could do it, I can do it too.

I can say one thing: this is not about a new turn in my health or anything else along those lines.  My health is fairly crappy right now, as is usual, but I have not taken a turn for the worse…  other than the spiked pain, non-stop migraines, constant tension in my whole body, wildly increased anxiety, panic attacks and depression as well as extreme exhaustion brought about by all of this.  It’s stressful to the point where I don’t even want to edit or create many days, which is an almost unheard-of low for me.  But these are clearly responses to the weeks and weeks of stress and worry.  I don’t want you guys to worry that I’m hiding some terrible new diagnosis from you.

I know I will get through this.  And I know that with Geoff, I will deal with the outcome, whatever it is.  But more than that, I know I will win.  I have to.  Knowing that doesn’t take all my fear and anxiety away, but it does give me hope to cling to.

I feel incredibly fragile in every way, but I will battle and I will be victorious.  Still, your prayers, well wishes and love would mean a great deal to me right now.  I can use all the help I can get.

I promise that I will try and let you guys know exactly what’s happening just as soon as I can.  I appreciate that you’re all being very understanding about that and respecting the fact that I simply can’t divulge much right now.

This self portrait felt especially appropriate for this post.  It serves as a reminder and inspiration to me to keep fighting, to get up when I’m knocked down, and most of all, never give up.  Thank you all so very, very much for all your support!  I cannot thank you enough.

With that said, please wish me a miraculous victory as I go into this battle.  Now, let me go find my suit of armor.

We Rise Again - © Sarah Allegra

We Rise Again – © Sarah Allegra

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On February 10th, the Institute of Medicine released the findings of a report it had been working on for approximately a year and spent over a million dollars on.  Their task: come up with new diagnostic guidelines for patients with myalgic encephalomyalitis/Chronic Fatigue Syndrome and decide on a new, single name to replace both ME and CFS, which are generally used interchangeably for the same disease.*  Considering that ME/CFS gets only a pitiful three million dollars in government funding per year (which may sound like a lot, but consider that male pattern baldness, which is not life-threatening, gets $16 million, and you realize how very, very little that is), this is a cost we cannot afford.

Silenced © Sarah Allegra, model Travis Weinand Read on for the full image!

Silenced © Sarah Allegra, model Travis Weinand
Read on for the full image!

The IOM’s findings are so upsetting to me, I can hardly organize my thoughts into rational sentences.  But while I may want to sob and punch a hole through the wall (which, let’s face it, I’m probably not strong enough to do anymore), I need to speak up about these incredibly vital points and I need to do so in a way that other people won’t dismiss me as merely a “hysterical woman.”

I’m going to be generous here for a minute; here are the few good things gleaned from the IOM’s 304-page report.

  • They recommend retiring the trivializing name “Chronic Fatigue Syndrome.”  I fully agree with that.  I could not agree with that more.
  • They admit that far more research needs to be done to understand ME/CFS.
  • They admit that ME/CFS is a real and physical disease.
  • They recommend that the Department of Health and Human Services should develop new, more accurate ways of diagnosing ME/CFS.

For about half a second, I was happy when I heard the IOM recommended changing the name of “Chronic Fatigue Syndrome” to what they’ve proposed: “Systemic Exertion Intolerance Disease.”  Mostly I was happy because I saw the word “disease” instead of “syndrome.”  And I will, begrudgingly, admit that their SEID is ever-so-slightly better than CFS.  If CFS is a kick in the balls, SEID is a kidney punch.  Neither is good, but I suppose if i were given the choice between the two (and I were male) I might choose the kidney punch.

Inside Looking Out © Sarah Allegra - model: Katie Johnson

Inside Looking Out © Sarah Allegra – model: Katie Johnson

Here’s what’s wrong with SEID.

The IOM complained that the name “Chronic Fatigue Syndrome” is demeaning and only focuses on one symptom.  Those are both true.  They also decided that “myalgic encephalomyalitis” was unsuitable because it also only focused on one symptom.  That is not true.  “Myalgic encephalomyalitis” literally means “muscle pain and inflammation of the brain.”  You have two symptoms being named, both of which are hallmarks of the disease and which have tons and tons of scientific proof backing them up, as well as patients’ own experiences aligning with them.  Additionally, more documentation can be found in the UK documentary Voices From The Shadows where multiple autopsies of patients who died from ME/CFS all showed inflammation in the same area of their brains.  Despite mountains of evidence to the contrary, the IOM decided that while nearly every person diagnosed with ME/CFS complains of chronic pain, that was not a general symptom for ME/CFS patients, and thus should be excluded from the name.

I know a lot of people with ME/CFS.  We are a close community as this disease ravages us in ways only other sufferers can truly understand.  We form deep online friendships since we are so often unable to interact with people in meaningful ways in the real world.  We rely on each other for advice about treatments and medications, as we almost always know more about our disease than our doctors do.  None of my doctors had ever even heard the name “myalgic encephalomyelitis” until I said it to them.  We are our own biggest support system.  And I do not know a single person with ME/CFS who does not experience chronic pain.  Personally, I have not had a pain-free day in over seven years.  To have healthy outsiders negate the 2,555+ days of pain I’ve experienced and say it’s not an important symptom is beyond a slap in the face.

A Fading Girl © Sarah Allegra - model: Brooke Shaden

A Fading Girl © Sarah Allegra – model: Brooke Shaden

But even those slights aside, “Systemic Exertion Intolerance Disease” fails their own test by simply naming only one of our other common symptoms; exertion intolerance.

Exertion intolerance is a very real thing for ME/CFS people.  And it doesn’t have to be physical exertion; mental or emotional exertions can leave us just as sick for days, or weeks, sometimes months… or forever, as physical ones.  For years and years, doctors have been advising us to exercise our disease away.  And for many illnesses, exercise does help.  But with ME/CFS, exercise can be absolutely deadly.  Push yourself too hard and you can make yourself house-bound or bed-bound… sometimes for the rest of your life.

We walk a knife’s edge every day, trying to judge what we can and cannot do.  It’s generally considered a fairly good idea within the ME/CFS community to try and remain as active as you can without overdoing it and making yourself worse.  It’s like playing a very stupid game of blackjack with your energy each day.  You don’t want to lose any ability to be active that you do have, but even hitting 21.01 could mean a week of being stuck in bed.  It’s a serious and deadly game we are forced to play every single day.

So yes, exertion intolerance is a very real and dire threat, but even given that, we’re still left with a name which merely cites one of our symptoms again.  And as I said, SEID is ever-so-slightly better than CFS simply because of trading out the word “symptom” with “disease.”  Laymen hear “syndrome” and it doesn’t sound serious; replace it with “disease” and their view shifts.  I have serious doubts that busy doctors, who have no time to read a 304-page document, will hear anything but “exercise avoidance” in place of “exertion intolerance.”  After all, exercise is a cure-all!  There’s nothing it doesn’t help!  That’s the mantra they’ve been taught again and again and it will take very dramatic events to undo those decades of conditioning.

Vanity's Muder © Sarah Allegra - a self portrait after I started experiencing ME-related hair loss

Vanity’s Muder © Sarah Allegra – a self portrait I created after starting to experience ME-related hair loss

Almost every ME/CFS sufferer I know has had at least one doctor who refused to believe there was anything physically wrong with them.  I had one of those too.  Mine decided I was simply depressed and anxious.  In a way, she was right; I was getting very depressed because I felt terrible every single day and nothing was helping it, and I was becoming increasingly anxious about my appointments with her because I was sensing she didn’t believe me.  I have experienced clinical depression.  There was one solid month in a very dark period of my life where I had to rationalize not killing myself every single day.  I know what depression looks and feels like.  It is a completely different beast than ME/CFS.

It’s like saying sharks and bears are the same threat.  Well, no, one lives in the water and generally attacks you if he mistakes you for a seal; the other lives in the woods and might attack you if she thinks you’re a threat to her cubs…  You get the picture.  Both can kill you, but trying to issue a blanket statement that they are both the same threat, coming from the same place, using the same methods to avoid them would be absurd.

The Blue Ribbon © Sarah Allegra - Model: Katie Johnson

The Blue Ribbon © Sarah Allegra – Model: Katie Johnson

ME/CFS is not “just” depression.  I put “just” in quotes because I know how serious depression can be and I never want to be dismissive of it.  It kills too.  But they are completely separate entities.  There is a tendency for people who have ME/CFS to become depressed because they have ME/CFS, but that does not mean they are one and the same.  Almost anyone with a chronic, incurable illness is going to get depressed.  You never hear people accusing cancer patients that the cancer is all in their heads; they’re just depressed and if they went for a nice jog, everything would be fine!

And lest you think I am fear-mongering and making ME/CFS out to be more than it is, let me remind you of a quote by Dr. Nancy G. Klimas, who specializes in treating both HIV/AIDS patients along with ME/CFS patients.  In 2009, she was quoted with the following: “…But I hope you are not saying that C.F.S patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.  I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”

The overwhelming majority of ME/CFS patients would have liked to have had our name officially changed to “myalgic encephalomyelitis.”  We made our preferences known loudly during the entire time the IOM worked.  ME is, after all, what most of the modern world calls it.  It was only because of one insidious man that the United States switched to “Chronic Fatigue Syndrome.”  And why was such a name invented?  To create a legal loophole where insurance companies would be able to deny sufferers coverage.  The schism between the United State’s naming of the disease and the rest of the world began with greed from insurance companies.  These are your US tax dollars at work.

And what’s even worse is that there is speculation that the IOM is intentionally confusing the issues around ME/CFS; making the definition unusably broad, ignoring patients’ wants and needs.  Once again, making sure we’re worse off than we were before they came along.

Breakable © Sarah Allegra - a self portrait

Breakable © Sarah Allegra – a self portrait

The second of the IOM’s tasks, coming up with a diagnostic criteria for ME/CFS, was also unnecessary.  Two excellent, specific and scientific definitions already exist (and are used by most of the modern world as well.)  It was loudly advocated by ME/CFS patients and specialists alike that the IOM adopt these guidelines.  In fact, 50 of the world’s leading ME/CFS experts sent letters asking that the IOM’s contract be canceled along with countless letters written and petitions signed by patients.

That brings up another salient point… who are these people chosen by the IOM for this heavy and delicate task, ripe with repercussions which will ripple through the decades?  They are 15 people, only seven of whom specialize in ME/CFS in any way.  Some are not even doctors.  How is this at all ok?  How was it allowed that a group of people who don’t have anything to do with the disease at hand would be asked to redefine it?

Let’s give them the benefit of doubt for a moment and assume they’ll really try and do a good job.  Who knows.  What did they come up with?  They decided that to be diagnosed with ME/CFS, you need only three of the following core symptoms:

  1. A substantial reduction or impairment in the ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by fatigue – which is often profound – of new or definite onset, not the result of ongoing excessive exertion and not substantially alleviated by rest.
  2. The worsening of patients’ symptoms after any type of exertion – such as physical, cognitive, or emotional stress – known as post-exertional malaise.
  3. Unrefreshing sleep.

And at least one of the two symptoms is also required:

  1. Cognitive impairment.
  2. The inability to remain upright with symptoms that improve when lying down – known as orthostatic intolerance.

Do you know how many diseases and conditions fall under this umbrella?  It’s so broad, it’s utterly useless.  You wouldn’t even need to have a physical ailment to qualify for ME/CFS.  This is a big deal.  If this new standard is adopted, this is the criteria that will be used to find patients to test new drugs and treatments.  Can you imagine how murky and confusing the results will be if your patients could potentially have almost any disease?  Answers will never be found under these guidelines.

In Between Awake and Sleep © Sarah Allegra - a self portrait

In Between Awake and Sleep © Sarah Allegra – a self portrait

As people online have pointed out, SEID backwards spells DIES.  And it’s hard to feel like that isn’t exactly what the IOM, HHS and CDC want us to do.  We are an embarrassment to them because they don’t know what our disease is, what causes it or how to fix it… and, of course, a great deal of that confusion was created intentionally; a fact they’re desperate for us to forget.  They would rather sweep us under the rug, ignore us, talk over us.  And sadly, that is very easy for them to do.  With so many patients house- and bed-bound, it’s extremely difficult to show our numbers, organize protests, or object to our treatment in any meaningful ways.

But this is what they haven’t counted on.

When you are backed into a corner by illness, you can either crumple under it or develop a steel core in the deepest part of your soul to bear it.  Some days you may flip back and forth between the two, but ultimately, your will strengthens.  The stakes are personal to us and they are very high.  Though it might take the help of our caretakers or cost us a week of energy or send us back to bed for months, we will not be silenced again.  Shifty, snakey policy-makers may have the energy and money we don’t, but they do not have this core to draw on.

We will fight.  And we will win.

Silenced © Sarah Allegra - model: Travis Weinand

Silenced © Sarah Allegra – model: Travis Weinand

Are you pissed off?  Good.  We need you to be pissed off.  We need a public outcry so loud that it simply can’t be ignored.  And we need the healthy, compassionate people of the world to join us in demanding change.

Here are some things you can do:

Pass around the image above, Silenced, on your social media platforms.  Linking to this post would be helpful!  I am giving you permission to use the Silenced image to help get our message across!  Put it on Facebook, Twitter, Instagram, Tumblr, Pinterest… wherever you hangout online!  The more people who see it and become aware of the problem, the better!

Tweet to @TheIOM, @HHSgov and @CDCgov letting them know your displeasure in the proposed name change.  We DO have the power to stop this from becoming our reality!  Please use the hashtag #MENotSEID.  Not sure what to say?  Here are a couple examples you are free to use!

.  : ME/CFS research will be useless with the name SEID.

.  : SEID is still only naming a single symptom.

.  : ME/CFS patients will not be helped by SEID, it will only hurt us further.

.  : MECFS patients reject SEID and demand the name ME!

.  : Why are we spending a million dollars redefining and renaming what doesn’t need it?

.  : ME/CFS patients WILL NOT be bullied into silence over the proposed name SEID.

Additionally, you can:

Submit answers to a survey about what you think of the IOM’s proposed name change.

Sign this petition to stop the HHS-IOM contract and accept the CCC [Canadian Consensus Criteria] definition of M.E.

Or this petition!

Every voice counts!

 

Would you also like to support me in my quest to continue making art in spite of ME’s constant presence in my life?  How lovely of you!  🙂  I have added the new Silenced image to my RedBubble shop as well as my Etsy store; you can get it (or most other images) as museum-quality prints, tshirt, stickers, covers for your phones and i-Devices, travel mugs, blank greeting cards, even pillows and tote bags!  Every purchase goes toward helping me continue to produce new art as well as spend the countless hours necessary to delve into issues like this post.  And every single purchase is hugely appreciated!

We Rise Again © Sarah Allegra - a self portrait

We Rise Again © Sarah Allegra – a self portrait

Images are from my Enchanted Sleep series, which portrays living with ME/CFS/fibro.**

Istagrammers!  Here is a square version of the image, already Instagram-friendly 🙂

Silenced © Sarah Allegra - model: Travis Weinand

Silenced © Sarah Allegra – model: Travis Weinand

*When you dig into it, no, ME and CFS are not describing the same disease, mainly because the current US diagnostic guidelines for CFS are so sloppy and wide-open.  Further information on the subject can be found here, along with countless other places online.  Since there is a lot to talk about in this post as is, for brevity’s sake, I’m using the term people are most familiar with, ME/CFS, though the definition I have in mind is the CCC and ICC definition of ME.

**Fibromyalgia is, for the most part, also used interchangeably with ME/CFS in the US.  This is not entirely accurate, much like ME and CFS are not really the same thing, but for the sake this post, when I talk about ME or CFS, I am also talking about fibro.

 

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******* NEW! *******

Red Bubble is holding a 15% of Stocking Stuffers Sale!  Use promo code STOCKING15 to get 15% off all stocking stuffers until 11:59pm PST on Friday, November 21 2014

I have also released my 2015 calendar, featuring 12 of my most popular images from the previous year!  I put out a new calendar every year making each one different and unique, as well as being a great value in getting 12 images to display.  Snap up this collector’s item and add a little magic and beauty to every day of 2015!

My 2015 Calendar!

My 2015 calendar!

The calendar features the beautiful models, actors and actresses Katie Johnson, Dedeker Winston, Dan Donohue, Travis Weinand and Aly Darling.  Images span many of my series’ such as DreamWorld, Enchanted Sleep, Glass Walls, Orphans Of The Mother Road and self portraits!

My Red Bubble store carries calendars, tshirts, hoodies, stickers, blank greeting cards, post cards, phone and tablet cases, laptop skin, throw pillows, tote bags, mugs (travel and regular) and even a few duvet covers, all covered in my images!  Every item they produce is extremely high quality and will last forever.  You can knock out all your holiday shopping in one stop, so come on by!  🙂

*******

It’s been a very crazy couple of weeks since my last post!  My sinus surgery is over, including an odd complication I had which caused an artery near the back of my sinuses to burst unexpectedly.  This led to me losing 2-3 pints of blood and having to have an emergency surgery last Tuesday to correct it.  I’m happy to say I seem to be all done bleeding and nothing else strange has happened since then!  I’ll tell you more about my adventure in another post; it’s a rather long story.  I’ve regained most of my strength but I’m still recovering a bit.  So let me tell you about today’s self portrait for now!

This image has been in my mind for a long time, ever since I this post.  I had discovered, in the course of looking through my blog’s stats, that someone had found my blog by searching “I have Chronic Fatigue Syndrome and I want to give up.”  My heart still breaks for this person.  I wrote a post at the time replying to them but I’ll probably never know if they saw it or what happened to them.

I’d wanted to create an image for my Enchanted Sleep series based on the idea of being beaten down by chronic illness yet getting up, but it took a while.  My first attempt was unsuccessful and I had to think for quite a while about what wasn’t working and then find time to reshoot it.  Eventually though, I had created the image I wanted to make.

While I had physical, chronic illness in mind when I was creating this, the image is certainly not limited to being interpreted just in that light.  Mental illness, for example, is another example of something you have to rise from again and again.  And it happens that I’m in a bout of depression myself right now.  The reasons are long and complicated so I won’t get into them now, but every day recently, I’ve felt like this just trying to get out of bed… never mind how I might feel physically.

Chronic illness, mental illness… they are not something you can beat in a day.  You’ll have good days and bad days.  You may have entire days, or even weeks or months where you don’t struggle with whatever it is that knocks you down.  But when it comes, you have to get back up.

Every time.

Every time.

Every time.

It can be exhausting, and you might not have anyone in your life who knows that you’re even battling like this.  Those who have a strong support system in place are fortunate; it helps, a lot.  But whether it’s something others know about or not, it’s a demon which must be faced and conquered every time it arises.

I hope that everyone reading this has their own support system to keep them going.  Friends and family, online or off, who can cheer them on.  Who can give them the push or pull they need.  We all need help from each other; there’s absolutely nothing wrong with asking for or receiving help.

Asking for help can seem more daunting than fighting the beast holding you down.  But do it.  No matter who is reading this, you have people in your life who love you, who care about you, who want you to succeed, who will extend the hand you need to get you through this.

Whether it’s an internal struggle no one else will ever see or you have countless loving people help guide you through your troubles, we must rise every time we get knocked down.

Every time.

We Rise Again - © Sarah Allegra

We Rise Again – © Sarah Allegra

If you need help and you don’t feel comfortable approaching anyone you know, you can always talk to The Samaritans.  You can call them, email them or even text them.  They have people around 24/7 to help you through whatever you’re facing and it’s completely confidential.  They are well trained and caring.  Give them a try if you’re in need of someone to talk to!  I can personally vouch for how much they help.

 

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I actually shot the images for this self portrait back in 2012 sometime, as I recall, and it just kept getting pushed down on my list of photos to edit.  I generally prioritize images which have other people modeling in them, since they took the time and energy to come model for me, so sometimes my self portraits get a little forgotten.  This was one which I definitely did not want to let get completely forgotten though, so as soon as I had the time, I eagerly jumped into editing it!

I don’t think many of you will be surprised when I say I’ve had my share of troubles with clinical depression.  Even as a teenager, the seeds were being sewn.  It’s something I’ve struggled with on and off for most of my life.  I’ve been to many therapists, tried countless treatments, medications, alternative therapies, read books, talked it out, journaled, and, of course, done art therapy.  Art therapy and submerging myself in nature, with animals and my friends and loved ones are the things that seem to work best for me, but everyone is different.  I have mostly accepted that it will probably be with me to some degree for most of my life, which is an easier future for me to face than one where I’m constantly disappointed by finding myself under its shadow again.

***Side note: ME/CFS/fibro are often tried to dismiss as simply depression or other mental health problems.  They are absolutely NOT the same thing.  I have experienced both and they are completely different.  Where it gets tricky is that people with ME/CFS and fibro often develop depression secondarily to their physical illness, but it’s usually because they feel terrible every day, many people refuse to believe they’re actually sick and they suddenly lose huge, important parts of their life to their illness.  I challenge anyone to not become depressed in those conditions.  What drives me crazy is that no one suggests that patients with cancer, for example, who develop secondary depression are “simply” mentally ill, but it’s an extremely common conclusion for doctors to jump to regarding ME/CFS and fibro patients.  I’ve had doctors tell me the problems were all in my head.

None of this is to say that mental health problems are somehow less important or real than physical health problems, they are simply two distinct things and require completely different treatments.  The simplest explanation I’ve come across to illustrate the differences between the two is this: ask a person with depression what she would want to do the next day if she woke up feeling completely well.  She’d probably have trouble answering you.  Depression robs you of all joy and motivation.  Ask someone with ME/CFS or fibro the same question and they’d give you an entire list of things they’d like to do.  ME robs your body of the ability to do things, but doesn’t take away the desire to do them.***

Since the severity of my depression waxes and wanes, I tend to think of it as an entity which I am periodically under the attack of.  Sometimes I imagine it as a malevolent cloud, sometimes a huge dragon; something which is dark and dangerous and can completely envelop me.  When I find myself thus enveloped, I repeat a mantra over and over to myself; “The clouds will lift.  The clouds will lift.”  It might be hours, days, weeks or months, but I know that at some point this battle will be over and I’ll have made it through to the other side.

I’ve written about him before, but Andrew Soloman’s incredible Ted Talk on depression bears repeating.  It’s beautifully insightful, hopeful, even when I’m under the darkest cloud and most importantly, lets me know I’m not alone in how I feel.  It’s also supremely excellent at explaining clinical depression to those who have never experienced it firsthand; an invaluable gift.  As Mr. Soloman states, “half the purpose of art is to describe [depression.]”  I could not agree more.

I don’t know whether we’re friends because we all share the same demons, or if I just happen to have a large percentage of good friends who have their own mental health struggles, but I wanted to create this image to show not just my battle, but theirs… and indeed, the battle everyone with depression finds themselves flung into.

When you’re in the throws of it, you don’t feel strong or brave, but I know that we are.  We bear terrible burdens which can break the human soul and every time we don’t succumb to it, we should celebrate.  But mental health is still greatly stigmatized in our culture, so there is rarely any celebration; there is rarely any acknowledgement of the battle that rages at all.  I feel it’s important and part of my job as an artist to discuss these issues which we would like to pretend don’t exist.  If we deny depression, then we will lose the battle.  The only way you can fight it is by first saying that yes, it exists; yes, I am under its cloud; no, that does not me a less worthy person; yes, I am brave and strong even though I don’t feel like it right now.

So this image is dedicated to all my dear friends who have been under that same cloud.  To my friends who have not experienced the cloud themselves, but support us when we’re in the throws of it.  Who love us, accept us and keep us going.  Shame and secrecy feeds the depression monster.  Truth and soul baring disarm it, love and strength defeats it.   Many, many thanks to my dear friends and loved ones who help me through these battles.  I just hope I can do the same for them.

Let’s take a step toward making the world a better place.  Let’s finally let the stigma around mental illness die.  No one would ever, ever choose to be like this.  We fight unimaginable battles to overcome it.  Instead of shaming those covered in battle scars, let’s celebrate their success.  They made it through.  There may be more fights, but they will make it through them too.  They will if we start supporting them instead of shaming them.

To everyone who knows this malevolent cloud firsthand, you are beautiful and strong.  And the clouds will lift.

The Clouds Will Lift

The Clouds Will Lift

The Clouds Will Lift - detail

The Clouds Will Lift – detail

The Clouds Will Lift - detail

The Clouds Will Lift – detail – I made custom bat wing brushes to construct the clouds

The Clouds Will Lift - detail

The Clouds Will Lift – detail

If anyone would like to share stories of their own mental health struggles, please share it in a comment!  Talking openly about these problems is the first step to erasing the stigma.

*****

Just a few more days!!

For the month of May, I am donating 50 percent of profits from all my sales to The Microbe Discovery Project, a group working to solve the mystery of ME and find a cure for those afflicted.  And what do I sell?  Well, what do you want?  Because my images come from the frameable to the wearable and in every price range.
museum-quality, fine art prints
iPad/iPhone/iPod covers
stickers
blank greeting cards
post cards
shirts and hoodies
wearable art
throw pillows
INTROSPECTIVE: my eight-week, on-line, course of self-discovery through photography.

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“I assess the power of a will by how much resistance, pain, torture it endures and knows how to turn to its advantage.” – Friedrich Nietzsche

 

Vanity's Murder

Vanity’s Murder, a self portrait

 

May 12th is called “Invisible Illness Day.”

You probably don’t know that…and that’s part of the problem.

Years ago, May 12th was chosen to be the international awareness day for chronic immunological and neurological diseases, which include everything from Gulf War Syndrome and Multiple Chemical Sensitivities to fibromyalgia (fibro), Chronic Fatigue Syndrome (CFS) and myalgic encephalomyelitis (ME).  Yet more money is spent each year trying to cure male pattern baldness than these diseases.

I’m all for a luxurious head of hair.  But, diseases like ME are taking lives.

A Fading Girl - model: Brooke Shaden.

A Fading Girl – model: Brooke Shaden

To be sure, “Invisible Illness Day” rolls off the tongue much more easily than “Myalgic Encephalomyelitis Day.”  But the name highlights one of the sources of great frustration for most of us — we often do not APPEAR outwardly sick, thus many people refuse to believe our illness is real.

Unfortunately, some of those “many people” include doctors, policy makers and insurance companies.

How do we fight an illness with no end, no cure, no treatment, no recognition?  How many people must die before the world pays attention?  How many sufferers must commit suicide from the hopelessness and misery they’re dragged through every day before change comes?  We fight it by bringing awareness of the problem, one person at a time.  Every tweet, Facebook post, blog entry, text and conversation you and I have about ME helps fight it.  Every petition we sign, documentary we watch and donation we give is a punch in ME’s face.  And here’s the latest way I’m balling up my tiny little fists.

For the month of May, I am donating 50 percent of profits from all my sales to The Microbe Discovery Project, a group working to solve the mystery of ME and find a cure for those afflicted.  And what do I sell?  Well, what do you want?  Because my images come from the frameable to the wearable and in every price range.
museum-quality, fine art prints
iPad/iPhone/iPod covers
stickers
blank greeting cards
post cards
shirts and hoodies
wearable art
throw pillows
INTROSPECTIVE: my eight-week, on-line, course of self-discovery through photography

Also, in honor of this day of raising awareness, I’m holding a contest to win a beautiful, 10″ x 15″, museum-quality print of my latest image, The Blue Ribbon; an underwater representation of the struggle that living with ME can be.  Your print will come on beautiful, shimmering, pearlized, archival paper.  And all you have to do is tweet!

The Blue Ribbon

The Blue Ribbon, model: Katie Johnson – enter the giveaway to win a print of this image!

Ready to tweet?  Use any of the following!

Curing baldness gets 4x more funding than ME/CFS, but no one ever died of baldness    

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ME/CFS knows no social or economic boundaries; it affects all equally w/out mercy.    
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ME/CFS in not in our heads & cannot be cured with exercise & a better attitude.    
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ME/CFS is not a “female” disease; 20% of sufferers are male.    
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ME/CFS isn’t just about being “tired,” it ravages every single part of the body.    
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ME/CFS can be just as deadly as MS, HIV and AIDS, yet it is largely ignored.    

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More exercise and a better attitude will not cure ME/CFS.    

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We’re not chronically fatigued, @CDCgov. We have myalgic encephalomyelitis.    

The Blue Ribbon - detail

The Blue Ribbon – detail

Tweeting multiple statements will count as extra entries, so enter as many times as you like.  However, tweeting the same statement multiple times will not count.  And that will probably just annoy the people reading your feed, so don’t do it. 😉  I will choose a random winner from all entries on May 20th and announce the winner here!

Thank you to everyone for reading and participating!

Curious how ME became an invisible disease?  Stay tuned to find out more for Invisible Illness Week!

If you have had your own experiences with ME, CFS, fibro or any other chronic illness and you’d like to share your story, please leave it in a comment!

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My dear friend and frequent collaborator Katie Johnson has recently started a new video series which profiles the artists she works with frequently.  I was honored to be featured in the first of her videos!  She put a great piece together which includes an interview with me and lots of behind-the-scenes peeks into how we work.

Take a look!

I often think of lines from the song the princess sings in Peter S. Beagle’s legendary work The Last Unicorn:

Oh, I am a king’s daughter
And I grow old within
The prison of my person
The shackles of my skin

And I would run away
And beg from door to door
Just to see your shadow
Just once and nevermore

The prison of my person, the shackles of my skin” perfectly describes how I feel about my physical body most days.  Though I doubt Mr. Beagle had ME in mind when he wrote it, it resonates so strongly with me.  And I’m sure people with other chronic illnesses will be able to identify with it; it’s a pretty universal problem across the chronically ill spectrum.

Feeling so trapped has always made me instantly know something of what Amalthea felt at finding herself in human form.  I imagine it was even harder for her though.  The disharmony we chronically ill feel with our body was something I’d wanted to express in my Enchanted Sleep series for quite a while and I was glad to finally bring the image to life!

There’s something more visceral about images than you often can’t replicate with words.  Words are powerful, they can build and tear down mountains, but the visual world offers the same information in a different form.  One that, if used well, can strike like a snake and bring instantaneous understanding.  That’s my hope with this series; to illustrate the life of a person with myalgic encephalomyelitis in a way that reaches where words cannot.

I will admit… I’d beg from door to door just to catch a glimpse of a unicorn’s shadow too 🙂

Here’s a look at the final image from our shoot:

Inside Looking Out

Inside Looking Out

And a detail shot:

Inside Looking Out - detail

Inside Looking Out – detail

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I like to check my blog statistics every few days.  You’re shown a wealth of information, some helpful, some less so.  In theory you can use this info to fine-tune your posts to get the maximum response… for me, it’s mostly just interesting, as I’m going to write what I’m going to write, regardless of how popular it is or isn’t.

One of the pieces of information it shows are the keywords people type into search engines which lead them to my blog.  By far and away, the most frequent phrase that pops up is “Veronica Ricci nude” or some variant thereof.  For a long time, the second most common phrase I’d see was “cyborg costume” (because of this photo); currently, people looking up things about Jack Hanna and Blackfish come my way a lot.  Sometimes the phrases are weird and creepy, but it’s still always interesting for me to see what people are looking for when they, intentionally or not, find my blog.

Recently I saw a very new phrase come up: “I have Chronic Fatigue Syndrome and I want to give up.”  My heart just about broke.  So if you’ll indulge me for a moment, I’d like to address the person who typed that.

 

I know how you feel.  This is a shit hand to be dealt.  It’s not fair, and it’s not your fault.  I understand why you feel like giving up.  It’s something everyone with any chronic illness of this caliber has to deal with.  The idea of having to fight the same dragon every day for the rest of your life is utterly overwhelming.  I think of it like the disease form of water torture; it’s not so much the individual moments which break you, but how they build up on each other.

I hope that whatever you found on my blog gave you some hope.  I hope that at the very least it helped you feel less alone.  I wish that I could promise you that there will be a cure soon, but we don’t know.  Regardless of what your precise situation is, you don’t have to bear it all yourself.  There is a wealth up support available online, and I personally have found great help from seeing a therapist who is a perfect fit for me.  You can also contact The Samaritans if you’re feeling really desperate.  I’ve done so myself on more than one occasion, and they really do help.

I would like to hug you and tell you everything will be ok.  Since I can’t, I hope that you can feel like love and kinship I am writing this in.  You are not alone.  I hope you’re able to find the strength to keep going.  Just as much as it becomes so overwhelming to think about the rest of your life being like this, I find it more bearable when you concentrate just on today.  Just worry about getting through this one day.  That can be more than enough overwhelming just on its own without projecting into the future.  I hope you come back, read this and it helps you, even a little bit.  And no matter what you feel from the people who surround you in your daily life, please know that I at least love you, and I care about you.

If you’d like, you can email me directly at sarah@sarahallegra.com.  You are not alone, and you are loved.

 

Much love to a fellow spoonie <3

Much love to a fellow spoonie ❤

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