Here we are at May 12th again. Another Invisible Illness Day come to bring awareness to all the illnesses and diseases which are impolite enough to leave their sufferers still appearing to be well. Of course, anyone more than casually acquainted with someone who has fibromyalgia, myalgic encephalomyelitis, chronic fatigue syndrome, complex regional pain disorder, multiple sclerosis, rheumatoid arthritis, Crohn’s disease, Lyme, lupus and many, many more illnesses can attest to how debilitating they can be. The facade of health they leave intact feels like salt in the wound; a confusion for those untouched by their cruel hand, a silent undermining force with us at every doctor’s appointment, a declaration that we are lying or greatly exaggerating our illness.
What else can I say about ME? About all the other forgotten, ignored diseases swept under the rug of modern medicine? Illnesses which embarrass our doctors with their constant reminder that we remain unhealed. Sicknesses with confusing, confounding symptoms which can morph and change like the whim of a butterfly’s flight. Maddening maladies which suck away our vitality, our joys, our passions, our lives as completely as any vampire.
I’ve written about ME extensively as it’s been an enormous part of my life for the last eight years. How I have not had a single day since late May of 2008 that was free of pain or its constant, overwhelming exhaustion. How it has progressively gotten worse each year. How the government would like to pretend we invisibly ill don’t exist. How grotesquely underfunded our research is, giving us the same amount of money for research as hayfever gets and less than 1/4 of what male pattern baldness receives. You have heard me spout the facts and statistics. You’ve heard me talk about my personal story and fight with ME. What else can I say?
I can say this: I am not beaten. I have not given up.
I am determined to get better. I am committing myself to be well, even if I have it about through sheer mental will. I will not give in to ME’s gloomy, hopeless future forecast of progressively worsening every year. I am not accepting a future of the living death that is ME.
I don’t know exactly how I will get better, but I am going to. As a sign of my determination, I changed my blog’s tagline for the first time since I started this blog years ago. “Art, photography, life and why I always feel like shit,” felt perfectly appropriate at the time. “Art, photography, life and how those are really all the same thing,” is much more appropriate now. My identity is not Sarah-who-has-ME. I am just Sarah.
As I wrote about in my last entry, my life has been pleasantly consumed recently by my spirituality. I have strongly felt how focusing on fighting ME has been feeding it. So now, I will ignore it as much as possible. I do not mean that I will forget my body’s current limits, or not honor them. Listening to my body and what it’s able to do is vital for my current and future wellbeing. But I’ve realized that I can live within the confines of my case of ME while still not letting it reign in every area of my life, and that feel incredibly freeing. This is the path I will pursue.
This also does not mean that I will not advocate for ME sufferers. I still feel very strongly that the only way we will bring about change is by demanding it. And we can only demand it if we know that it exists in the first place. But I can also advocate without allowing ME to rule every part of my soul.
As May 12th approached, I wanted to create a new image for my Enchanted Sleep series, which is all about living with ME. I asked Katie Johnson, frequent model and collaborator as well as dear friend, if she would help me bring some concepts to life and she gladly agreed to help. Through a variety of factors, I wasn’t able to shoot these images until very recently, which meant I had a very short window to edit one up and release it for Invisible Illness Day, but I got it done! Ideally, I would be releasing the whole short series we shot, but I am content with having just one to show you and help illustrate life with ME. With that, please let me present my latest image to you, Living With The Tombstones.
I probably don’t have to explain the symbolism behind shooting this image in a graveyard. ME (and many other invisible illnesses) truly can be a living, nightmarish death. Even if you’re not one of the unfortunate souls cursed with severe ME, where any touch, light or sound cannot be tolerated, you die every day to the dreams and hopes you had when you were healthy. You might discover new passions to pursue within ME’s confines, but do you ever truly forget what’s been taken from you? If you do, I am not there yet.
I took the name “invisible illness” and interpreted it quite literally, editing out any part of Katie’s body which showed outside her long, princess-like dress. And the mirrored mask felt like the perfect touch. When people look at us, they rarely see us; they see their projections of who we are. Often what they see says far more about them than us. Some will look at me and, because I can occasionally manage to put on clothes, have Geoff drive and go with him to the grocery store, refuse to believe there could be anything physically wrong with me. They don’t see the toll that those short, simple trips take on me. They don’t know that grocery shopping is my ENTIRE plan for that day, probably several days. How the lights and noise and bustle inside the stores give me migraines, panic attacks and leave me in bed for the rest of the weekend. They don’t see the weight of my illness on Geoff and my family. How if I see friends, they always have to come to me. I so often feel like a dead-weight wife, daughter and friend. The times I’m overwhelmed by the ME and can’t decide between crying and being too tired to cry. How many pills I take every day to try and make it to the next day and not be consumed by the constant pain I’m in. They just see a fairly normal-looking girl.
I can’t blame other people for not knowing that I’m sick. I don’t display the characteristic signals of someone who is unwell, so of course people assume I’m healthy. But we need to get to a place where I could tell a stranger that I have ME and they might know what I’m talking about. That if someone else said they have MS or Crohn’s or fibro, that stranger would have heard of those illnesses. That the stranger would have at least a basic idea of our struggle and the dire need for change, for research, for treatments, cures and basic respect.
We can get there. We will. One May 12th at a time.
Join in the #MillionsMissing protests in Washington DC and other locations through the world on May 25. You can participate even if you’re too unwell to join in person or if there isn’t a protest near you!
Start a discussion, link to articles, blogs, videos and/or artwork that discusses ME or other invisible illnesses that will help spread awareness. Add a #may12th hashtag to your posts!
Watch and share the video below which I made last year:
I’d like to thank everyone in my life, online and off, who has supported me during these trying past eight years. Especially Geoff, who I’d only been dating for a month when I became ill. Lesser men would have run from what he had to face, but he’s stuck with me, no matter how bad things get. And I’d also like to thank everyone for the extremely warm and receptive response you all had to my previous blog post. Your kind words and love and support are greatly appreciated, now and always! ❤
I have had this image in my head for about four or five years and the timing was just never quite right for it. Thankfully, since I’ve been working with the multi-talented Travis Weinand, I had the chance to do it the way I’d been picturing it for so long!
Are you all familiar with the Tiananmen Square Massacre in 1989? I’ll give you a rough summary of events. Some of the details still remain repressed though, such as the number of people actually killed, but I’ll do my best.
In April of 1989, the death of Hu Yaobang, the former Communist Party General Secretary triggered massive protests calling for political reform. The protests began peacefully and were led mostly by university students, who gathered in Tiananmen Square to mourn and protest. This went on for several weeks and some of the students took to hunger strikes to express their desire for reform. Since the entire incident has been so thoroughly repressed, it’s hard to get an inside take on what was happening in the minds of the Chinese government – you can’t very well ask about an event which never officially happened.
However, after the protests went on for weeks and showed no signs of slowing, Chinese leaders decided force was called for to disperse the protesters. Marshall law was declared, approximately 250,000 troops were sent in; given permission to use lethal force if necessary.
And, as is so often the case, once lethal force has been approved, means for using it will be found.
By June 5th, the heavily outnumbered and out-armed protesters had been largely slaughtered. Exact numbers remain unknown; official records report 200-300 died; earlier reports fro the Chinese Red Cross on the morning of the 4th recorded 2,600 deaths, which was later retracted. Regardless, the students stood no chance against an armed and deadly militia with orders to make them go away, whatever it took.
And then we come to June 5th.
After weeks of unrest leading to a brutally bloody and deadly fever pitch, by the 5th, one man, at least, had had enough. As the tanks came rolling into the square to continue to get rid of the protestors, one man made his stand in a way which still shocks and awes people today.
With nothing more than a few shopping bags in his hands, he stood in the tanks’ path and forced them to stop. The tanks tried to maneuver around him, he stepped back in front of them. After the massacre he had surely witnessed over the past several days, this goes beyond mere heroism. This was fearlessness. He was angry, and no matter that the tanks could have kept rolling and ran him over, or they could have chosen to shoot him as soon as he came into view, he stood. And for minutes, a single man stopped an entire line of tanks.
At one point he even climbs on top of the tank, bangs on it and demands to speak to the person in charge. After a few minutes, a group of people, who seem to be protesters also, join him and hustle him out of the way, probably fearing, with good reason, for his life.
No one knows who this man is. The world has called him Tank Man, a fitting name. We don’t know what happened to him. Was he arrested, was he killed, or did he simply never know the incredible impact his act of sheer bravery had on the world? With the extend to which the massacre has been suppressed in China, it’s quite possible he never knew his act was recorded or that it became famous. I would love to know what happened to him, but so far no one has come forward claiming to be Tank Man or knowing who he is.
One man against a line of tanks. He knew the events of the days before and how deadly the protests had become. He knew that he would likely be shot or run over.
But his one act of peaceful, quiet defiance stopped an army.
That is what I wanted to celebrate in my image with Travis. I wrapped a mantle of white flowers around his shoulders, both to symbolize purity and peace, which we typically associate them with in America, and also for its association with death in the Chinese culture. I instructed Travis to be quietly, peacefully strong, but unshakeable, and rolled up a piece of craft foam into a tube to shoot the image through, as if you were looking down the barrel of the tank at him. I climbed a ladder to get a view where I’d be higher up than Travis (not as easy as you’d think since he’s so tall and I’m so short!) and shot away. Travis perfectly embodied the exact emotion and look that I’d asked for. It doesn’t get better than that.
I hope that Tank Man is alive and well. I hope that he knows the impact his defiance had on the world. I hope we discover some day who he is. Until then, he will be Tank Man, the many who stopped an army.
This is a preview of a new set I’m currently editing for DreamWorld. This set will be important to the entire series as it marks the entrance of the first non-benevolent character.
At first I had envisioned this character, whom we only get a glimpse of for the moment, as a more Puckish, trouble-maker character, but as I worked on the costume and planned the shoot, I was also watching the first few weeks of True Detective. True Detective (one of the most original, mythic, challenging, well-acted and completely-fabulous-in-every-way show I’ve seen in a long time) had already begun making dark allusions toward The King In Yellow, and I found it seeped into what I was doing. And the darker I took the character, the more right it felt, so it was perfect timing on the part of the universe.
My model for this shoot is the incomparable Dan Donohue, an actor known for his extensive stage work, including just about every Shakespeare play you can think of and Scar, in Disney’s Broadway production of The Lion King. Dan is currently rehearsing for the Oregon Shakespeare Festival where he will play Richard the III in Richard the III, along with Mr. Murry in A Wrinkle In Time. While Dan himself is one of the sweetest, sincerest, most lovely and generous people I’ve had the pleasure to work with, he has the magical ability to summon inner darkness on whim. I had him start the shoot a little more Puckish and less evil, and let him get more and more dangerous as we progressed. And, of course, I ended up loving the darkest shots the best.
I have the wonderful problem of having too many wonderful images to choose from, but I’ll get by somehow. I wanted to send this one out into the world today, not only to harken the rest of the set, but to celebrate Dan’s appearance on Brooklyn 99 tonight! It’s a fantasic comedy in its own right, and Dan will be a great addition. He’s one of those all-talented people who is good at just about everything. It should be a lot fun to watch, especially since Stephanie Beatriz, aka Rosa is his real-life girlfriend! Think Rosa will warm up to him? Let’s find out by watching tonight! 🙂
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In other news, there are some new ME/CFS developments which could be incredibly damaging to how the medical communities, and in a trickle down way, the public in general, think of us and treat us. The short story is that the government has hired a new commitee to come up with a new definition for ME/CFS. Not only is this completely unnecessary as we already have two extremely comprehensive definitions in the International Consensus Criteria and the Canadian Consensus Critera (both PDFs), but because the team of 15 people they have assembled is comprised of only 8 ME specialists. I’m having trouble finding the data at the moment, but the remaining specialists in the team may not all even be doctors. This does NOT seem like the optimal group.
With the pittance given to ME research in the US, it seems absurd to spend nearly 1/4 of it reinventing the criteria wheel, and even more absurd when so many of them had no prior knowledge of ME as an illness. The ineptitude of the group can be read about in the sample letter below.
There is something we can do to combat this nonsense. You can go to: http://www.contactingthecongress.org/, type in your zip code and find your representatives. Email them the following:
Recently, the IOM released its report on Gulf War Illness recommending that the illness be named “Gulf War Illness” and that the two existing case definitions be used. In short, the IOM has done exactly nothing since they were hired four years ago– for $840,000 – to come up with a case definition.
The illness, they said had “too many symptoms.” HHS has now hired IOM to “define” Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – another complex illness with many symptoms – to the tune of 1 million dollars. And, like the committee hired to review GWI, the IOM committee for ME/CFS is primarily composed of non-experts – people who have no research or clinical experience with the disease.
Fifty of the world’s top ME/CFS experts have formally protested the IOM contract to Secretary Sebelius. They have pointed out that there already is a case definition for ME/CFS designed by experts, the Canadian Consensus Criteria, and that having non-experts devise a new definition will set research and patient care back by decades. These experts are backed by thousands of patients, some of whom publicly voiced their opposition to the contract on January 27, 2014 at the IOM public meeting.
Jim Binns, chair of the Research Advisory Committee on Gulf War Veterans’ Illnesses says, “The conclusions of the report show that it was a waste of money. The committee never had the expertise or the process to do a case definition.” The current IOM process to review and redefine ME/CFS is an even bigger waste of money. It also a waste of time, which patients who are desperately ill with this disease cannot afford to lose.
Please support us by asking HHS to cancel the IOM Review of Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and to follow the recommendation made by the experts: Immediate adoption of the Canadian Consensus Criteria for ME/CFS.
The implications of what this group decides could be devastating to the already disadvantaged ME/CFS sufferers. You can, of course, add your own details, but the letter above is a good sample. One thing we have seen is that this group can respond to public pressure and outcry, so let’s make them respond!
My deepest thanks to anyone who is willing to do this!
Mythic Pictures 