Born with this neuromuscular disease, Nick Capozziello 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 a muscle spasm occurs, his body becomes contorted. His right foot will curl under him, his right arm will pull behind him, his left hand becomes difficult to move, and he is unable to talk. A cramp may last minutes, or hours; sometimes his body is cramped for days. Nick is my twin brother.
Over the years, one picture has lead to another, and a remarkable story has emerged. The time I have spent photographing Nick 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 a muscle spasm occurs, his body becomes contorted. His right foot will curl under him, his right arm will pull behind him, his left hand becomes difficult to move, 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. Cerebral Palsy has kept Nick from many common things in life that most of us 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.