Cerebral Palsy Distances and Unites Connecticut Twins

Sept. 11, 2013— -- Chris and Nick Capozziello, 33-year-old twins from of 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 Capozziello, 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 Capozziello told ABCNews.com. "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.

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Many of the images are a painful reminder of the toll cerebral palsy takes on the body.

"Nick has had to deal with his own anger," said Chris. "I see him twisted up on the floor. There was nothing easy about making those pictures. And I feel like sort of an intruder in my own family -- inwardly, it was awkward for me."

Chris's photography, on topics as diverse as the Ku Klux Klan, a woman's struggle with breast cancer and heroin addiction, has appeared in the New York Times and other national publications. The idea to photograph Nick's life came while he was a student at Rochester Institute of Technology, where he said he rarely spoke to others about his twin.

"I didn't want another conversation including someone who would have pity about how life was different for him. I had a hard time dealing with that," said Chris. "I didn't want to let on to him that I felt bad. I wanted to toughen him up and push forward, hoping he would get better, if he could."

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 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.

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Chris first noticed their differences when they were in kindergarten. "We'd be throwing a baseball or tossing a Frisbee, but even that much physical activity could trigger a cramp for Nick."

Nick said that on many occasions, his twin has jumped in to defend him.

"A few years ago we went to a masquerade ball and afterwards we were walking down the street and there were a bunch of teenagers," said Nick. "One was mimicking the way I was walking and it really got to Chris."

Still, over the years, the brothers have fought. "He always wins," Nick said of Chris. "But who's counting?"

Nick takes numerous medications and later, as an adult, had deep brain stimulation surgery. "It's been helpful, but not a cure-all." said Chris.

Nick especially likes a photo, shot from the head down, of the scar from where an electronic device is implanted in his chest so doctors can electronically adjust the muscle contortions.

"It shows I have a problem, but I like the way I look," he said.

In a typical day, Nick surfs the net, checks in with Facebook and three or four nights a week goes to the local Knights of Columbus Hall where he smokes cigarettes and is an avid 8- and 9-ball player, participating in three tournaments a year. He is also an usher at the Catholic Church, where the twins grew up going to mass.

Chris said he doesn't see the book as a vehicle to raise awareness about cerebral palsy. "I see it more as a kind of memoir."

At first, he worried about how his family would react to the book. Chris read it to Nick, but couldn't get beyond page 25 before his brother began crying.

"It brought tears to my eyes and I left the room," said Nick. "I really don't like myself this way. But when he read it to me the second time, I kind of pulled myself together."

The family agreed Chris should share the photos publicly. "Nick said he was proud and kissed me on the cheek," said his brother.

The book is set to be published in October with Edition Lammerhuber, but Chris has turned to the crowd sourcing site Kickstarter to offset the costs of printing and binding.

Early previews of the book have received praise for its unvarnished look at Nick's life.

A California physician with 7-year-old twins -- one with CP and one without -- contacted Chris just to say "kudos to you" after seeing the book online.

"I liked the candid nature of it," he said, not wanting to use his name to protect the privacy of his boys. "It's very honest and not glorified for better or worse. Not, 'Hey look what my handicapped brother has achieved. And not, 'Look how he struggles.' He is smoking, getting tattoos. If everyone on the planet had CP, he would be an average kid."

One of Nick's favorite photos was taken in a bar in California, where he is lighting up a girl's cigarette. He wears a leather coat and has a smirk on his face.

"I love that moment," said Chris. "But it's also a little sad and I wonder if he'll ever get married and have a family, though he certainly can. He's a compassionate and loving man."

Recently someone emailed Chris to take a religious swipe at Nick's condition.

"They said because Nick was disabled, he can't sin," said Chris. "I kind of laughed. For me it pointed out what a lot of people do. We turn them into this thing that is not able to do wrong. They have a special virtue because of their disability.

"I don't think that Nick is special because he has CP," he said. "He is a human being just like me. He's not perfect."

To learn more about Chris Capozziello's project go to Kickstarter