I’d like you to meet my twin brother. I’ve been drawn to photographing him for as long as I‘ve been making pictures. The time I spend with him, looking through my camera, has forced me to ask questions about suffering, and faith and why anyone is born with disease. Nick has cerebral palsy. CP is the aftershock of an explosion no one hears. For Nick, that explosion came at birth. When he was born, he was not breathing. I was born healthy, screaming, kicking, and alive. He was not, but the doctors revived him, and things seemed fine, they weren’t.
I’d like you to meet my brother. I’ve been drawn to photographing him for as long as I‘ve been making pictures. The time I spend with him, looking through my camera, has forced me to ask questions about suffering, and faith and why anyone is born with disease. Nick has cerebral palsy. CP is the aftershock of an explosion no one hears. For Nick, that explosion came at birth. When he was born, he was not breathing. I was born healthy, screaming, kicking, and alive. He was not, but the doctors revived him, and things seemed fine, they were not.
The story in pictures began for me twelve-years-ago, when I was a student, trying to find my way as a photographer. Pushed by professors to practice seeing on a daily basis, I turned my cameras on those closest to me. I photographed Nick playing a very slow game of basketball; slow because the CP that wracks his body makes everything in life more difficult. I made other images that were, and still are, burdensome to look at, ones where a cramp had taken control, and his body had gone rigid. It was these images that made me uncomfortable as if I were an intruder in our own lives, or some sort of monster for making pictures of his suffering. At the time, I could not tell you why I was making photographs of the differences between my brother and me. The images are my lament and my guilt about being the healthy twin, pursuing my dreams, while Nick stayed at home with our parents.
Cerebral Palsy, a neuro-muscular condition, affects people in many different ways. For Nick, when a cramp forms his face changes, even before his body contorts and locks. His mouth shuts and his lips pinch together. I can see it in his eyes, the way he looks slowly at me and then slowly away. It is this look that transforms him from my twin brother, my equal, to a younger more dependent brother. But this is just the beginning. Next, he will be unable to talk and his body will twist: his right arm will curl behind him, his right foot will bend beneath him, and he will be incapable of walking on his own. It may last minutes, or hours; sometimes his muscles cramp for days.
In November 2009, Nick under went Deep Brain Stimulation (DBS) Surgery. For the first time, our family held out hope that things would improve for him. The doctors said that while the surgery might not completely stop his muscles from cramping, it could significantly decrease the effects of the cramps.
As they prepped Nick for surgery, screwing the metal stereotactic frame into his head, he was afraid. We all were, but we told ourselves it was worth the risk. Today the doctors continue to make minor adjustments to the electrical current that runs through the wiring into his brain, our family waits with anticipation for any change in Nick’s life.