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Posts Tagged ‘awareness’

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.

Read Full Post »

***Want to win a free print of my latest image, The Blue Ribbon?  Read on to find out how you can enter!!***

It’s been an emotional week for me; not surprising since ME is something I deal with firsthand.  Since we’ve all walked through the more difficult parts of this disease, let’s take a break with some levity and fun!

 

From constantfuckingshit.wordpress.com

From idelhearts.com

This actually does happen to me. From invisibleillnessweek.com

 

From memgenerator.com

From icanhascheezburger.com

And lastly, one poignant one:

From PostSecret.com

Now go tweet some facts so you can win a print!! 🙂

 

To do my part in raising awareness about ME, 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    

*****

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

ME/CFS can be just as deadly as MS, HIV and AIDS, yet it is largely ignored.    

*****

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

*****

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

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!

Read Full Post »

***Want to win a free print of my latest image, The Blue Ribbon?  Read on to find out how you can enter!!***

ME Awareness Week continues!  Catch up on the story with the first, second and third posts!

Spoon Theory - a self portrait

Spoon Theory – a self portrait

For anyone not convinced of the seriousness of ME, let me present you with a quote from Dr. Nancy G. Klimas in a Q & A article from The New York Times on Chronic Fatigue Syndrome.  Dr. Klimas serves on the board of directors for The International Association for Chronic Fatigue Syndrome and treats both CFS patients as well as patients with HIV and AIDS.  In 2009, she made a comment comparing CFS to HIV and AIDS.  A reader expressed anger over her comment, calling it alarmist and saying it was making CFS sound like a much more deadly disease than it is.  Dr. Kilmas had this to say [emphasis mine]:

“…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.”

In Between Awake And Asleep - a self portrait

In Between Awake And Asleep – a self portrait

This is the point in my explanations where I like to remind people (and myself) that I am lucky; I am on the mild-to-moderate end of the ME illness spectrum.  It can get much, much worse.  There are thousands of people afflicted with severe ME, on constant morphine drips, in agonizing pain, earplugs in every second of the day, unable to tolerate the slightest light or sound, unable to feed or dress themselves or even use the bathroom on their own.  People die from ME.  That is why it is so very, very dangerous when the medical community trivializes our disease, insists it’s psychosomatic, insists there’s nothing physically wrong with us.  YES.  Yes, there is, doctors.  Those who have died from ME, and there are many, many examples, frequently show the same inflamed areas in the brain when autopsied.  While I’m not sure I’m ready to say ME is purely a neurological disease, it sure seems to be a big piece of the puzzle.

When the medical community has nothing to offer you, you become your own doctor, your own detective and your own science experiment.  You try anything and everything that might help; medications, physical therapy, diet changes, supplements, “Eastern” medicine, energy healing, modifying your sleep habits, psychotherapy; anything.  One year when I was still able to work a part-time job, I spent over a quarter of my pitiful earnings on doctor copays, medications, supplements and treatments.  That amount hasn’t changed much since then.

While there have been some setbacks recently for the ME community, there has also been forward momentum.  I know of at least two ME documentaries currently in production.  I had the chance to work with one of the films, Canary In A Coal Mine, and get involved with when it was raising funds through Kickstarter by donating the printing rights to some of my ME-themed images for them to use as backer rewards.  Everyone was shocked and delighted when the Canary film more than quadrupled its initial goal in its 30-day campaign!  I take this overwhelming support as a sign that our voices are finally starting to be heard, and that, perhaps, this indicates the winds are finally starting to change.

The Fragile Blossom That Opens In The Snow - a self portrait.  "“Courage is not the towering oak that sees storms come and go; it is the fragile blossom that opens in the snow.”  – Alice M. Swaim

The Fragile Blossom That Opens In The Snow – a self portrait. “Courage is not the towering oak that sees storms come and go; it is the fragile blossom that opens in the snow.”
– Alice M. Swaim

I never write posts about subjects like this with the intent to garner pity or complain.  That is never my intention.  What I want is to bring awareness to this extremely misunderstood, unappreciated and devastating disease by speaking frankly and candidly about it.  We are suffering and dying and there are few people who know about it and even fewer who are doing anything about it.  The squeaky wheel does get the oil.  Enough noise needs to be made and enough public outrage needs to be expressed over how the medical community (as a group; there are certainly exceptions and wonderful doctors working alongside us) is ignoring us and indeed doing harm.

It can feel daunting to attack such a huge, glass mountain.  It does not matter that you are only one person and that I am only one person.  Gandhi, Nelson Mandela and Martin Luther King Jr. were each just one person.

I genuinely believe this is a problem science could solve if enough effort was made to solve it.  At the very, very least we could find treatments to alleviate the symptoms.  We have tackled other serious diseases.  But we need the funds and we need the public to demand action.  And we need a name that isn’t dismissive and demeaning.  So this last part goes to the CDC:

Hey, CDC, change our fucking name already.

Exoskeletonation - a self portrait

Exoskeletonation – a self portrait

To do my part in raising awareness about ME, 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    

*****

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

ME/CFS can be just as deadly as MS, HIV and AIDS, yet it is largely ignored.    

*****

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

*****

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

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!

Catch up on the story with the first, second and third posts this week about ME.

Thank you to everyone for reading and participating!  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!

Read Full Post »

***Want to win a free print of my latest image, The Blue Ribbon?  Read on to find out how you can enter!!***

Yesterday’s release of The Blue Ribbon has special meaning for me since it marks the 30th anniversary of the Incline Village outbreak in 1984.  Never heard of the Incline Village outbreak?  I hadn’t either, not until I’d been sick with ME for several years.

That ME outbreak gave birth to a medical schism between the United States and the rest of the world.  It enabled American health insurers to coin the demeaning name “Chronic Fatigue Syndrome” so they could distance themselves from covering ME patients…or even recognizing they are ill.  The most well-written, comprehensive and succinct explanation of the outbreak and its consequences comes from an excellent article written by Erica Verrillo, which I will share with you here [emphasis mine]:

Martyrs To A Name - models myself and Aly Darling

Martyrs To A Name – models myself and Aly Darling

*****

Nobody is willing to wrap their tongue around anything that requires 11 syllables. But that is not why Steven Straus at the NIH decided to “rebrand” myalgic encephalomyelitis (ME) as “chronic fatigue syndrome” in 1987. He wasn’t verbally lazy. He was nefarious.

…To understand why the department of Health and Human Services (HHS) decided to bury this illness with a silly name, we have to go back to 1934, to the Los Angeles County Hospital. In that year, a polio epidemic was raging through California, claiming hundreds of lives. In 1934, 198 staff members at the LA County Hospital were struck. But they did not develop paralysis, nor did they die. They suffered from a range of symptoms that included weakness, easy fatigability, exercise intolerance, and photophobia, all of which suggested a neurological disease – like polio. But their symptoms did not resolve over time.

It was not polio. The physician who reported this mysterious epidemic, Dr. Alexander Gilliam, called it “atypical polio.” Eventually, two of the doctors who had fallen ill sued. They each won two million dollars – an enormous amount of money in those days.

As the epidemic of “atypical polio” spread around the Northern Hemisphere, increasing numbers of people were struck. In 1955, there was an epidemic in Royal Free Hospital in London. Like the LA epidemic, there was a high attack rate among hospital personnel. The investigating physician, Dr. Melvin Ramsay, called it “myalgic encephalomyelitis,” meaning pain accompanied by inflammation in the brain and spinal column. He noted that the symptoms of ME exactly replicated those of the LA County Hospital outbreak.

Since then, there have been over 60 outbreaks of ME, but the one that drew media attention in the US was the Incline Village outbreak in 1984. Two doctors, Dr. Dan Peterson and Dr. Paul Cheney, began seeing patients with a peculiar illness. The illness caused easy fatigability, weakness, pain, sleep disorder, and a spate of neurological symptoms. It got worse with exercise. Over that summer, hundreds of people were struck. The doctors were sure that it was an epidemic, and that it was caused by a pathogen affecting the central nervous system. They called the CDC.

The CDC showed up eventually, but they refused to examine any of the patients. Steven Straus called it a disease of “depressed menopausal women.” HHS made this characterization known to the press, which then dubbed the disease “yuppie flu.”

Once it was sufficiently discredited, “CFS” could be safely shoved under the rug for three decades.

Since the 1984 Incline Village outbreak, over one million people in the US have contracted the disease. Between 17 and 20 million people have ME worldwide. The economic losses are staggering – $17-23 billion dollars annually in the US alone.

But over most of the past 30 years NIH has spent nothing on research for the disease. This year it reserved $5 million, or less than $5 per person. In contrast, the NIH is spending more than $2.7 billion on AIDS, which has a comparable prevalence.

This paucity of expenditure has slowed serious scientific research. In addition, because there is no money for research, researchers and clinicians at academic institutions are discouraged from studying the disease. Doctors in major hospitals are told not to treat it, because insurance companies won’t pay for an illness that has “no cause and no cure.” And peer-reviewed journals will not publish research papers on the illness.

In short, the illness has been blacklisted. And the reason is not simply because HHS is incompetent, or because it feared yet another AIDS-like epidemic – although those things influenced its decision to do nothing. The reason HHS has spent thirty years in denial stems from those two doctors who received $4 million after the 1934 LA County outbreak. From that point on, this illness has been on the radar of insurance companies.

It would be a mistake to think that HHS operates without input from the insurance industry. And it would be a mistake to believe that the insurance industry – which has spent 30 years refusing to cover patients with the illness, and has hired physicians to dismiss the disease as “all in your head” – is not panicked by Obamacare. With over a million sick with ME, and a quarter of those unable to get out of bed, they stand to lose billions.

*****

Breakable - a self portrait

Breakable – a self portrait

Yes, a bureaucratic trick of the insurance industry changed our name and helped keep the world ignorant to our illness.  This makes me so angry I could cry.  The sheer cruelty of it is astonishing, even for insurance companies.  Intentionally denying care, intentionally denying the existence of the disease at all; it’s unforgivable.  But we sick will NOT be forgotten.

The vast majority of the world has never even heard of ME, let alone experienced it, on their own or through others.  That ignorance is absolutely deadly to us all.  If the public does not demand, loudly, persistently, that change MUST happen, it never will.  And that cannot be allowed.  The stakes are far too high.

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    

*****

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

ME/CFS can be just as deadly as MS, HIV and AIDS, yet it is largely ignored.    

*****

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

*****

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

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!

Keep watch for tomorrow’s post about my own personal history with ME, and catch up with yesterday’s blog if you haven’t seen it yet!

Thank you to everyone for reading and participating!  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!

Read Full Post »

“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    

*****

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

ME/CFS can be just as deadly as MS, HIV and AIDS, yet it is largely ignored.    

*****

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

*****

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!

Read Full Post »

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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Yesterday, the 27h of May, marked my five-year anniversary with ME… which leads me to talking about why I call it ME verses the multitude of other names given to it, in addition to introducing my latest photo on the subject which you can WIN a print of!  Make sure you read all the way to the end to find out how to enter 🙂

Vanity's Murder

A detail shot from my new photo

I’ve been wanting to address this for some time and it just keeps getting pushed down to the bottom of my blog to-do list.  But my anniversary seemed like a good time to bring it up.   In the United States, we call ME by a whole host of other names; Chronic Fatigue Syndrome (CFS), fibromyalgia (fibro), chronic fatigue immune dysfunction syndrome (CFIDS), post-viral fatigue syndrome (PVFS), Chronic Epstein-Barr virus (CEBV), and most insultingly, the “yuppie flu.”  Luckily we seem to have mostly left the “yuppie flu” label behind us, but many of the other names are not much better.  Calling it Chronic Fatigue Syndrome has been likened to calling tuberculosis “Chronic Coughing Syndrome,” or stomach cancer “Chronic Upset Tummy.”  The names are not indicative of what’s really happening in our bodies.  They are trivializing and patronizing.

I like myalgic encephalomyelitis (ME), which is what most of the rest of the world calls it.  It literally means “inflammation of the brain and spinal cord with muscle pain.”  This at least hints more accurately at what may be going on.  Muscle pain is one of the defining characteristics of reaching that diagnosis (as I can personally attest to; I woke up nearly weeping from muscle pain after a strenuous shoot yesterday) and the evidence is suggesting more and more that this is ultimately a neurological condition.  ME at least doesn’t carry the negative connotations of the other names; people are generally under the assumption that they are not “real” diseases.

In Between Awake And Asleep

In Between Awake And Asleep

I should be perfectly clear that there is still a tremendous amount of controversy over what name to give us, and if they really are all more or less the same disease.  I genuinely believe they are the same disease from everything I’ve seen and read, but there will be many who do not agree with me.  However, since the entire reason the US broke off from the rest of the world’s name in the 1980’s was to create an insurance loophole so companies could deny coverage to patients… I am reluctant to believe what anyone on that side of the table claims.

So I call it ME, though since it is a lesser-known name here in the US, I’ll often consent to referring to it as ME/CFS.  Meeting the names halfway, so to speak.

As I said, yesterday was my five-year anniversary with ME, although the signs were certainly starting to form years before that.  I was unnaturally tired all the time, I got sick and injured easily and seemed to have a little more trouble healing.  But since I barely knew ME existed, and I was young, in my late teens and early twenties, I figured it would pass.  You think horses, not zebras; you don’t automatically jump to the conclusion that you have a strange, little-known disease.

A Fading Girl

A Fading Girl

Some of you have heard the story of how I became acutely sick with ME before, so I will try and just hit the high points.  Five years ago Geoff and I went out to lunch.  We’d been dating for exactly a month.  After lunch, I felt tired so I laid down and took a nap.  When I woke up, my stomach was very upset and I thought I had food poisoning.  Though it wasn’t pleasant, I figured it would pass quickly.  Several days later I still felt nauseous, so I saw a doctor who was very unconcerned about me and suggested I take some Pepto Bismol.  How helpful.  Over the next several days the pain in my stomach gradually changed from an all-encompassing gripping, nauseous pain to an extremely sharp and localized pain in my right flank.  Appendicitis? I wondered.  The pain was higher than would be classic, but it was so sharp, extreme and had come on so suddenly, I worried nonetheless.

After 10 days of pain and nausea, I finally saw a good doctor.  They determined pretty quickly that it wasn’t my appendix, ordered an ultrasound and a LOT of bloodwork (the only reason I didn’t faint was because I was sitting down, but I felt bad enough to wish I’d fainted.)  Everything came back normal.  They thought it must be a kidney infection, so I took the antibiotics, glad that we had figured out what was wrong and that I’d be over it soon.  But the treatment didn’t do anything; I still felt terrible.

That same story repeated and repeated over the next few years.  For a long time it was thought that my crazy flank pain and my fatigue were two separate problems; at this point, I believe the evidence indicates they both stem from the same cause.  I have undergone more tests and procedures than I care to remember, I have tried every food and supplement imaginable; every Western and alternative approach.  Occasionally I find something that helps even fractionally, and I cling to it like a drowning girl.

When I think back on this time, I feel like what was happening in my body is best expressed by this scene from Akira, near the end of the movie.

Tetsuo's grim end.

Tetsuo’s grim end.

My body seemed to completely fall apart and spiral out of control, with me stuck in the middle of i.  Up until then, I had been quite consistent with doing Pilates and yoga, and enjoyed their effects on my body.  I ate pretty well, I didn’t smoke, drink or do any drugs.  I felt like I was doing things right.  But when ME finally hit, none of that mattered any more.  My body became a disgusting, horrible prison with a mind of its own, seemingly bent against me in every way.  And the fact that almost none of this showed outwardly made it even worse.  One of the things I hear from other ME people as being the most frustrating thing is having people say to them, “You don’t look sick.”  It’s true, often we don’t (until you get into the very dire, extreme cases of ME) but inwardly, that movie clip is what I felt was happening to me.

Thankfully, the flank pain has been reigned in somewhat over the years through arduous nerve-blocking injections, although it never truly goes away.  And we still have absolutely no idea what’s actually causing the pain in the first place.  But since it used to feel like I had a shard of glass trapped inside my abdomen, I’m very grateful for every bit of pain chipped away from it.  The fatigue and muscle/tendon/anything-but-my-flank pains have all gotten steadily worse over the past five years.

The Fog Rolls In

The Fog Rolls In

My life has become smaller and quieter each year in response to the unreasonable demands of my body, only to have it ask for even more.  To a degree, it’s generally agreed that staying as active as possible is best; that “if you don’t use it, you lose it.”  This is tempered with one of the few things known with absolute certainty about ME: if you continually push yourself past what you can handle, you WILL get worse.  And it can get much, much worse than what I experience.

The UK documentary Voices From The Shadows paints an uncomfortably vivid picture of how bad ME can really get.  It shows people completely bed-bound, in constant, wracking pain, despite morphine drips, eyes continually covered as they are unable to endure even sunlight filtered through curtains.  Ears always protected with earplugs because they are so sensitive to sound.  From my end of things, going to the grocery store is only barely tolerable.  All the light and noise, oh the cacophony of noise… people talking, carts wheeling, plastic crinkling, children crying, music playing, announcements made… I genuinely dread the necessary trip each week.  And if I feel that way about it when my case of ME is one of the mildest diagnosable forms, I can hardly imagine the miserable existence the poor souls with severe ME endure.

Unjust

Unjust

I don’t want to have to know what severe ME feels like first-hand.  So I keep trying treatments and supplements.  I modify my bedtime, my sleep habits and try to rest as much as possible, without giving up any of the physical ability I still have.  I try to do gentle yoga and do more walking, which I can also use as time to scout locations.  My family and friends all know that any plans made are subject to the whims of my body and I may have to cancel at the last minute.  Very, very thankfully, they have all been extremely understanding and supportive.  It’s a hard enough battle to fight your body every day; I am sorry for those who also have to fight with their loved ones too.

People not understanding is at the core of our problems.  The medical community that doesn’t understand what our disease is or how to help us.  The public, who have been led to believe our disease is not valid.  And we ourselves who are trapped in these confusing, maddening bodies that seem to be actively working against us.

Breakable

Breakable

Luckily, I do believe the tide is finally starting to turn.  More and more noise is being made about ME, and we are starting to get even a little bit of recognition and validation.  More research is being dedicated to finding out what’s really going on in our bodies.  I try to maintain a balance between being open to changes coming and breakthroughs being made without actually hoping for them.  The disappointment is too great when they don’t pan out.

Through it all, the highs and lows, the dinners I can attend and the ones I have to stay home from, the times I weep from pain and frustration and the days I walk easily through meadows, I have my art.  I’m sure you’ve all heard me talk about my Enchanted Sleep series, photos from which are scattered through this post, and how I use my photos to portray what living with ME is like.  Art has helped me keep my sanity through these last five years.  It’s something I can do, not just in a metaphoric sense and raising awareness, but it’s physically something I can do.  Walking through the woods scouting locations is good for me, body and soul.  I can still edit even when I need to lay down (which is frequent) since I work on a laptop.  Sometimes muscle or tendon pain in my right arm or wrist will force me to stop for a few days or weeks, and those are always agitating times.  I want to be creating.  That is where my soul finds meaning and pleasure.

Spoon Theory

Spoon Theory

It’s been a rough five years.  But it’s also brought some incomparable joys to my life; my discovery of photography, for example.  And most importantly, Geoff.  Geoff who stuck by me when I became very ill after we’d only known each other for two months, and been dating one month.  Lesser men would have run.  He has supported and loved me every step on this tricky road, and is always there in the dark moments when I want to give up.  He gently pulls me up and sets my feet going again.  I am so incredibly grateful for him.

To be honest, I have been depressed with this anniversary looming ahead of me.  I have heard that if you don’t go into remission within the first five years, you’re never going to.  And while intellectually I realize that’s a pretty ridiculous, sweeping statement to make (how could anyone possibly know that when we don’t even know what it is we have?) it’s made this date feel even gloomier.  I am choosing to not believe that I will automatically never go into remission, simply because it hasn’t happened yet… but it’s also ok for me to feel sad.  It’s ok for me to mourn the things I have lost.  It’s ok for me to have bad days when I just cry and burrow under the covers all day.  It’s ok to be human and have emotions.

Mourning For Things Lost

Mourning For Things Lost

I work hard at my art, not only because it’s so deeply satisfying, but because it’s something I hope to make a career out of.  Means of employment get fewer and fewer for me every year, but I can do art.  It’s a way for me to earn money and contribute to my family’s income, things very important to my sense of identity.

I think this is going to be a good year for my art.  Not only with my recent good news, but other things are starting to happen too.  I think this is going to work.  But please feel free to support my work and pick up some blank greeting cards, limited edition prints or sign up for my online self-discovery-through-photography course.  🙂

Each journey through ME is different.  This is just my story.  I can only hope that by telling it, it adds another drop to the sea of change coming and will bring us a tiny bit closer to recognition and a cure.

Longing For Better Days

Longing For Better Days

I’ll just say a few words about my latest Enchanted Sleep photo, Vanity’s Murder.   My hair has always been quite fine and refused to grow any longer than my shoulders.  No matter what I did, how often I did or didn’t cut it, nothing changed that.  While it’s always annoyed me, since I would love to grow it romantically long, it was a fact of my life that it never would.  A few months ago, I thought my hair seemed a little shorter, but I dismissed the thought.  It kept nagging at the back of my mind though, even though I hadn’t gotten it cut in months.  Finally, I looked at a photo of me from about six months ago and I was shocked by the proof of how much shorter my hair was; nearly down to chin-length.

I went in to my doctor, since hair thinning and loss is a possible side effect of almost every medication I take, but he suspected it was a response to stress, not medication.  I finally made an appointment to see my fantastic hair guy (Hurley, at The Hair Pyrates).  He agreed that the loss was probably stress-related too, but importantly mentioned that the hair I’m seeing now first started growing four to five years ago… and I think we can all agree that I started undergoing a great deal of new stress five years ago.

After everything ME has taken from my life, all the things it’s made me give up, my hair just felt like the absolute last straw.  I had no idea how much of my feminine identity was tied into my hair until its existence felt threatened.

The good thing about stress-induced hair loss is that it’s usually pretty reversible, at least in theory.   At Hurley and my doctor’s suggestions, I started taking a hair, skin and nails supplement and I was startled by how quickly I saw a difference.  It still has a ways to go, but I’m so grateful that it is coming back.  Worrying about my hair may seem like a very superficial, frivolous thing, but it wasn’t to me.  It was about having one more thing taken away from me, it was about losing control over another big factor of how I appear to the world, and the things that contribute to my identity.  There is so much about ME that is outside of my control.  I am very thankful that this time, I could fight back, and actually win a little.  Let’s hope this is a sign of things to come.

Vanity's Murder

Vanity’s Murder

Vanity's Murder - detail

Vanity’s Murder – detail

Vanity's Murder

Vanity’s Murder – detail

Vanity's Murder

Vanity’s Murder – detail

Vanity's Murder

Vanity’s Murder – detail

Lastly, let me tell you about how you can win a signed and numbered limited-edition print of Vanity’s Murder!  The very kind people heading up the ME and You fundraiser were very receptive when I wrote them and offered to donate a print to their cause if it would help them.  And while I’m sure they have more than enough on their plates, they quickly came up with a way to do this!  Want a chance to win the print?  Follow the directions below!

  • Click on the ME and You button below and donate whatever amount you can through the big yellow “Donate” button on their site.
  • Leave a comment on this post saying that you donated and mention that you’re entering to win Vanity’s Murder, as several artists are doing similar giveaways.  Make sure that the name you leave in your comment matches your Paypal name!
  • Leave a message for the ME and You people during your Paypal  checkout, again stating that you’re entering to win Vanity’s Murder.
  • A winner will be randomly selected on June 6th and I will announce the winner here!

Click here to donate!!

That’s it!   This is such a win-win situation; the cause is so worthy and someone will get a beautiful print as well.  🙂  For anyone who missed it, the amazing people at ME and You are trying to raise funds to do further testing of a new drug that has shown real promise in helping to cure ME.  This is something we absolutely must study more, and hopefully, within a few years it will be approved and people all over the world will be able to try it.  And just maybe, some of them will go into total remission like some of the people who it’s been tested on.

Remission.  I can hardly imagine what that would feel like.  But I would love to find out.  If you can, please consider donating to this great cause.  And thank you very much!

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