The Fog Rolls In © Sarah Allegra
My dad likes to tell a story about me from when I was two years old. He was very slowly “chasing” me around the coffee table, making silly monster noises while I giggled and shrieked and ran (or more accurately waddled) away. After a few laps around the table, I seemed to figure out I wasn't making any progress in my efforts to escape the “monster” behind me. Seeing that I couldn't run away, I turned around, ran toward my dad, wrapped my arms around his leg and bit his knee. Obviously, as a two-year-old, this didn't actually hurt my father. But it's a story he likes to tell to illustrate who I am and what I'm like.
Having Myalgic Encephalomyelitis is a lot like endlessly running around a coffee table, minus the giggling and fun. No matter how fast you run, the M.E. will be right there behind you. It will always be bigger, faster and more inexhaustible than you. You cannot escape it. And it has no knee to bite.
The Blue Ribbon © Sarah Allegra
I was diagnosed a little over six years ago, though I'd had symptoms for much longer, dating back into my late teens. It sent its first tendrils into my body so slowly and quietly that it took a long time for me to realize something was truly physically wrong with me. Then one day, those tendrils exploded into choking vines. And I have been trying to hack them off ever since.
Most of you reading this will be familiar with the ways in which M.E. steals from your life, one piece at a time. The constant exhaustion. The lack of stamina. The hyper-sensitivity to all stimuli. The way it grabs hold of your brain and squeezes until there's almost nothing left of you. The loss of relationships, the loss of freedom, the loss of activities that used to be the driving force in your life. It is a ruthless evil which won't be satisfied until it has taken every part of your body, mind and soul.
The Spoon Theory © Sarah Allegra
As of now, there is little I can do to fight it. But I will not surrender to it either. Modify my life, yes. Try and manage my symptoms as best I can. Those are skills I have developed to survive this disease and keep going. And creativity in my attack methods is key.
I have always been artistic; painting and illustration were my main focus for most of my life. But eventually it became too painful to wield a pen or paintbrush. At the time this came to a head, I was dating a photographer (now my husband). I sat him down one day and made him explain the basics of using a camera to me. Suddenly, I could create images again. And it was a beautiful thing.
Three Good Days © Sarah Allegra
I started into photography focusing mostly on venting the emotions I was going through during my early stages of testing and diagnosis. It was a very frustrating, upsetting time, but I could vent those feelings through the images I created. Photography became more and more important in my life. Not just for the catharsis it offered me, but for the ability to create which it put back in my hands.
Early on, I discovered that my images could convey emotions and concepts in a much more concise and visceral way than my words. So, I began working on a series visually portraying what living with M.E. is like. I wanted healthy people to understand. Not for pity or attention. But for awareness. Most people don't even know M.E. exists. And until people know and understand, there can be no effective public outcry for treatments and cures. My series continues to be a small step toward that larger goal of raising awareness. And it is a salve for my soul. It gives me a measure of control. It gives me power against what I cannot fight any other way. It matters.
Martyrs To A Name © Sarah Allegra
I cannot slay the M.E. Not yet, anyway. I accept my limitations and do my best to work with them or around them. But for the foreseeable future, we will be together...no matter how much I hate that thought.
But I will not go quietly. I have my art. I will keep creating as long as I am physically able to. And though it may be a mostly symbolic defiance – like a bite on the knee from a two-year-old – I will keep fighting.
If you're not offended by artistic nudity, see more of my work at SarahAllegra.com.
Inside Looking Out © Sarah Allegra