"THE DISTANCE BETWEEN US"
I want answers. I want explanations as to why some suffer and others do not. Initially, photographing my twin brother wasn’t something I set out to do; but over the years, one picture has lead to another, and a story has emerged. The time I spend photographing him has forced me to ask questions about suffering and faith, and why anyone is born with disease. Nick has Cerebral Palsy. Born with this neuromuscular disease, he is able to walk and speak and function on a fairly normal level, except for the fact that at any moment his muscles may spasm and cramp. When this occurs, his body becomes contorted, and he is unable to talk. A cramp may last minutes, or hours; sometimes his body is cramped for days. The pictures have been a way for me to deal with the reality of having a twin brother who struggles through life in ways that I do not. CP has kept Nick from many common things in life that most may take for granted: playing sports, holding a job, learning to drive, having a girlfriend. One of the hardest parts of being Nick’s twin is living my life, knowing that most of my experiences will forever be out of his grasp. Suffering raises countless questions. From time to time, someone will ask if I ever feel guilty for ending up the healthy one. I do. I look at him and think that it could have been me, and am constantly reminded and aware of his struggle. I wonder why he has to be the one who struggles on a moment-to-moment basis. It stirs up this process of grieving that never seems to end, like one long lament. Nick recently underwent Deep Brain Stimulation Surgery. For the first time in our family’s lives, we wait with great anticipation and hope that things will change for him. The doctors say that while the surgery may not completely stop his muscles from cramping, it may significantly decrease the effects of the cramps on his body. Already, Nick has seen improvement, lifting everyone’s hopes and expectations.
The way I remember it, there was such coldness in the air that it cut right through us on that January morning in New York City. Nick leaned against a fire hydrant and lit up a Marlboro Red, trying to relax from a cramp. While I waited for him to finish his cigarette, a passing woman glanced at me, then down at Nick, who looked up slowly and grinned. She fleetingly returned his smile, and he took another drag with the fading smirk still on his lips.