(NEW YORK) — Chris and Nick Capozziello, 33-year-old twins from Milford, Conn., were born six weeks early and five minutes apart. They were both healthy in utero, but when Nick arrived last, he stopped breathing and was later diagnosed with cerebral palsy, a condition that came with crippling muscle spasms and cognitive challenges.
“I wonder if it was my fault,” said Chris, now an award-winning photojournalist. “Always as a kid, I was pushing past him in order to break free. What if I did the same in the beginning and the cord got wrapped around his neck. …It was a fear I couldn’t tell anyone as a child and I still feel it as an adult.”
Chris went away to college, but Nick has remained at home with his parents and is unable to work because of his spasms.
“Although I was free, I felt guilty,” said Chris. “I knew I was leaving and having experiences, while he stayed home. He was stuck in time.”
The fraternal twins remain close, seeing each other several times a week, and now Chris has used his photographer’s eye to give a snapshot of Nick’s life, one filled with pain but also much joy — at home, in the pool hall where he is a champion player, and on a cross-country road trip where the brothers went out drinking and dancing with girls.
Now, in his first book, The Distance Between Us, Chris offers a collection of 156 black and white photos with accompanying text that neither sentimentalizes nor takes pity on Nick. He even photographed the scars from Nick’s deep brain stimulation surgery, which doctors performed to stop his debilitating muscle contractures.
For Chris, it has provided a vehicle for him to explore his survivor guilt; for Nick, the book gives a portrait of both his deepest frustrations and dreams.
“I just kind of wish I was able to do the things that he, my sister and everyone else in the world can do,” Nick told ABC News. “But yeah, in a way, I think [the book] actually brought us kind of closer.”
Some of the muscle cramps that Nick experiences are so severe he is bedridden, unable to move. But soon, he will be moving into his own apartment with his hamster Chipper.
“I am 33 years old — I want to be on my own,” he said. “Chris put in the book — I forget the exact words — but I feel like I am stuck in a prison with nowhere else to go.”
Cognitively, Nick has some “minor setbacks,” in his speech and understanding, according to his brother. He is not wheelchair-bound but is prone to spontaneous cramping of his muscles, when he “locks up” and can’t move.
Many of the images are a painful reminder of the toll cerebral palsy takes on the body.
Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. It is the most common motor disability in childhood, affecting about 1.5 to 4 per 1,000 live births around the world, according to the Centers for Disease Control and Prevention.
It used to be thought that CP was mainly caused by lack of oxygen during the birth process, but now scientists believe that this causes only a small number of CP cases. All those with the condition have problems with movement and posture, but their disabilities can vary widely: Some can walk, while others are wheelchair-bound. Some have intellectual disabilities. Epilepsy, blindness or deafness also may be present.
Copyright 2013 ABC News Radio