“I wanted to be a War Photographer.” When I first started my Grad program at the Academy of Art University, I thought that was my calling. I knew that it was, it felt like a calling from God, almost like what someone feels just before dedicating their life to God as a priest, or monk. I knew what War Photographers did, thanks to the work of Jim Nachtwey and Larry Burrows to name a few. As the program progressed, i started to realize that the route of war might not be for me. Little did I know that soon I would find myself photographing on the front lines of a war of a different sort.
A little boy and his family fighting everyday against the disease Epidermolysis Bullosa, or EB. Just like any war, it had it’s losses, victories, disappointments, confusion for the people involved. For 12 years the family has been fighting a losing war with no end, EB having the upper hand.
Similar to real battlefield reportage, I witnessed the carnage, the victories, the losses, pain, suffering, crimes against humanity, and the sparkling triumphs of the human spirit in the face of adversity. I met people who would become my friends, good friends who helped me to understand why I was there. The importance of what I was doing, and how to strengthen my abilities to convey an even stronger message of hope, and understanding so that some day a light at the end of the long dark abyss of a tunnel may be seen, ending this war of pain, suffering, and loss. I met both sides, looked in their eyes to see that neither had choice in the matter. They both had to run their course until they both perished, or a solution was found to end the fighting.
At my midpoint review for my Masters program, I mentioned that one experience I had early on would be a proving ground for me, my trial by fire. I realize now that experience was only the tip of the ice berg for what was to come, what I was to see and experience. War takes many different forms. EB, and the people it affects is one of those forms. It is a disease that is all inclusive. It isn’t limited to just one area or person, or one aspect of life. It affects Garrett and his entire family, spreads to his friends, caregivers, and community that help him.
EB not only affects Garrett externally, his skin, it affects his entire body inside and out, the lining if his esophagus, the membrane of the eyes, anemia, bone density, weight gain, his teeth, inside of his mouth, in essence any skin type surface, or membrane.
The cost of this war is high in regards to the supplies needed to continuously fight. Insurance covers a good portion, while other times the family has to try to secure funding from other places.
This is a rare disease that most people have never heard of. It is an evil that is waged on children and their families, affecting so many others. It’s so easy to look and then turn your back to forget it. Garrett and his family don’t have that luxury. There is no taking a day off from the disease, or forgetting about it, or turing their back to it. They must live with this everyday of their life until it ends. It is similar to those untold wars that you rarely hear of happening around the world. Because its not televised does not mean its not happening, or that people aren’t dying, or suffering, or don’t need help.
I have experienced this many times throughout this project. It was a horrible feeling of shame, a feeling that is synonymous with war. It was very easy for me to say at times, “I’m done here for now, bye until next time.” And walk away, leaving them to their hell. But there was one time that stood out as being the worst for me. One of the few times during this experience where I truly felt disturbed, shamed. The weight of this family’s war finally bore down on me, left to hold it alone for a moment. This was a turning point. This is where I got it. Everything I had been working on finally came together, and I saw the disease truly for what it was—a fucking war with no end in sight!