A Thousand Battles, A Thousand Victories

© Sarah Allegra

"Know thyself, know thy enemy. A thousand battles, a thousand victories."

-- Sun Tzu, The Art of War

​Another May 12th come and gone. Another year of fighting the civil war inside my body while trying to maintain something that resembles a life. Another year trying wrest each day back from the hands of the enemy, ME, and trying to make people aware that it exists.

May 12th is International ME-CFS Awareness Day. As many of you who follow my work know, I was first touched by ME on May 27th of 2008, just about 11 years ago. I have not had a day where I felt good, or a pain-free day since then. I have not not felt exhausted in all that time. Like an invading horde, it has sunk its roots deep into my cells and I don't know if I will ever fully be rid of it. I am tired. And tired of being tired. Tired of being in pain. Tired of enduring treatments which often seem to do more harm than good. But most of all right now, I'm tired of feeling like a victim.

When I first started thinking about what I'd like to do for my annual ME-themed photos, my concepts weren't great. They were as tired as I was. I spoke to Geoff about it, who suggested going in an entirely different direction. Instead of trying to portray how ME physically feels, try to portray how I feel about ME. And I have some very strong feelings about it. It doesn't feel like a cerebral, emotionless disease, it feels like a malicious invader, inexorably taking over my body no matter how fervently I fight against it. It feels deliberate in the things it takes away from me, the passions it forces me to give up, the delights I cannot even pick up, the joys it smacks from my hands. It is so personal, so vindictive, it truly feels like a sentient being.

I am tired. But I am more tired of it than anything else. Of having to submit to its whims and rules. Of fearing its wrath if I overdo it in the most basic of ways. Of being forced to live in obedience to a mad, evil tyrant.

I want to fight it, physically if possible. I can fantasize about wrapping my hands around its throat and squeezing until there's nothing left of it. I am so, so tired, but I will keep fighting it. It's all I have left to do. And each day I make the choice to get out of bed, to continue living in my mutinous body is a victory for me. It's a battle won, not the war yet, but just maybe, someday, all these battles will stack up and turn into that greatest win.

Until then, I will keep fighting. Bloody, battered, frequently finding myself at the end of my strength, I keep going. I cannot let this monster win. This year, I am declaring war on the ME. And while I might not seem like the most fearful foe, I can promise you that it should be afraid. I have strength in reserves that I didn't know I had.

As I thought about what to call this set of images (there will be three total when they're all done), The Art of War came to mind and it felt perfect. Though I might not beat the ME through pure force, I can outfox it. While ME's awareness ribbon color is a deep blue, I wanted to show blue's opposite, orange, in important details. The courage-building Norse runes written on my face are painted with orange, as are my eyes; the windows to the soul. I wanted to show that in my deepest depths, I am *me*, I am not ME. And that is as valid, if not more, than any physical fight, to Sun Tzu. Please join me in spreading awareness of ME-CFS and fibromyalgia by sharing these coming images and the following hashtags. Every mind opened is another friend, another supporter, another person who will speak up for the research and funding that we need and deserve.

This is not about a disease which is merely uncomfortable and unfun. This fight is often fatal. Sometimes by complications, sometimes by the ME directly, and sometimes by forcing its victim through so much suffering, they choose to end the pain themselves. The stakes don't get higher. Yet we get some of the lowest funding of any disease; an amount similar to what hayfever research is granted. Less than a quarter of what male pattern baldness receives. We suffer, burn and die while politicians fiddle and work rooms. A few valiant researches continue the quest anyway, but they can't do it on their own any more than I can. We all need help. But first, people need to know there's a problem. Please help me spread the word. There is no time to spare.

I'll see you on the battle field.

#May12th, #MillionsMissing, #MEawarenessDay, #MEAction, #MyalgicE

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