A Photographer Focuses on His Twin Brother’s Life With Cerebral Palsy

The Photo Blog
Sept. 11 2013 12:07 PM

A Photographer Focuses on His Twin Brother’s Life With Cerebral Palsy

Christopher Capozziello
"When I visited yesterday, he had a cramp. When I stop home today, I find him asleep on the floor, still wearing the same clothes. After all these years, there is still a part of me that is shocked and scared, as if for the first time, finding him on the floor, his body contorted, looking like a twisted and mangled car after an accident."

Christopher Capozziello

Christopher Capozziello’s “The Distance Between Us” is a poignant examination of the life of Capozziello’s fraternal twin brother, Nick, who has cerebral palsy.

Capozziello has been photographing Nick for 13 years and has a Kickstarter campaign (through Sunday) to help fund the publication of his book of the same title in November by Edition Lammerhuber. In the book, Capozziello addresses the shame and guilt he’s felt at being able to lead a “normal” life, free of the suffering his brother has endured. “There are moments I struggle with photographing and including in the book, and sharing in general,” Capozziello wrote via email. “Eventually, I came to a place where it was obvious that I needed to tell this story.”

Photographing Nick during periods of happiness—hanging out at a local bar or shooting hoops—was easy, but telling parts of Nick’s story, including a painful surgery and recovery to try to alleviate cramps, were more complicated  and forced Capozziello to question his ideas of both photography and the project. “It seemed wrong to make so many pictures of him hurting, and many times, I wanted to put the camera down and look away,” Capozziello said. “Those are the images I have the hardest time sharing—pictures where he’s all twisted up, unable to communicate or move on his own—pictures where he looks so defenseless and vulnerable. I share those images because it’s part of his experience, but it’s not at all comfortable.”

Christopher Capozziello
"When we get off the train, he limped towards the stairs. For us this is normal, a part of our lives that we have always lived with as far back as I can remember. Unable to speak because a cramp has formed, he says, just above a murmur, that he can make it up the stairs on his own. So I stand back and watch him struggle up the stairs."

Christopher Capozziello

Christopher Capozziello
"These seizure-like cramps have not occurred since his high school growth spurts. But now they're back. At times his body is rigid but still. Other times, he has no control of anything. It's like something possesses him: his closed fists might punch his face or neck; he might flop on the floor like a fish yanked from the water, his limbs smacking against the hardwood; his jaw might open wide, then clamp down hard, sometimes on his tongue; he might lay still, his back arching until it looks like he is being stretched out on one of those old-fashioned torture racks. Whatever his body is doing, it is accompanied, at some point, by an awful cry that sounds like it's coming from somewhere deep within his soul."

Christopher Capozziello

Christopher Capozziello
"When I look at my brother I feel lost. Nick always has to struggle. He probably always will."

Christopher Capozziello

Capozziello said making personal photographs public brought up emotions he had never shared with his family. “Often times, it’s assumed that the pictures I’ve made of Nick have been a cathartic experience. At first they were not,” he said. “I was afraid of what that honesty might mean to my family. I had never shared with any of them my feelings of guilt in this way and in those words [that appear in the book]. There’s a lot that often isn’t discussed with those that are closest to us. In some ways, I was shielding them from my sadness, and anger.”

Working as a war photographer has always been a dream of Capozziello's, but he avoided it because he felt that his family would be devastated if something had happened to him. It’s part of a push-pull relationship he has with his family and Nick and one that he describes in the project. “As I enter new seasons in my life—leaving for college, and starting a career—our differences become more pronounced, and I often feel like I'm leaving Nick behind, as if he’s stuck in time,” Capozziello said. “If I ever get married and start a family, I know I’ll deal with guilt in some way because Nick wants those things, too. He understands the world enough to know what he’s missing out on, and I think that will always be something that is hard for me to deal with.”

Christopher Capozziello
"He has been asking me to go to the Knights of Columbus for a while now, just to hang out, play some pool, and have a beer. Tonight it finally happened. It was great to just hang out with him, make a few pictures and spend some time relaxing with my brother."

Christopher Capozziello

Christopher Capozziello
"I"ll get one of these frantic phone calls from Mom telling me Nick’s having one of THOSE cramps, and that I need to come home and help them hold him down. As I weave through traffic I worry about our parents, who are much smaller than us, and also now much older, about them struggling to hold him still."

Christopher Capozziello

Christopher Capozziello
"We were out tonight at a small gallery opening where my collective had our first group show. The theme: Foreign and Familiar, which seemed to fit Nick's and my relationship well, so I put up a handful of photographs of him. I was worried how he would react, even though we had already talked about this, and he seemed excited about it. He enjoyed talking to people at the opening about his experiences. I think anything that gets him out of Mom and Dad's house and puts him around others is a good thing. By the time we get home, he has a cramp, and I need to help him inside and into bed."

Christopher Capozziello

Although his parents look past Nick’s disability to see his humanity more fully, Capozziello said he’s struggled to see beyond his and Nick’s differences. “I think that’s because we’re twins, and standing next to him, I’m the constant reminder of what life could have been like for him,” Capozziello said. “It’s created a burden, one that I think I felt for a long time was fair to carry for him. In some ways, I felt it was just.”

Capozziello hopes that people will both look at the photographs and read the text in order to understand the relationship between him and his twin. “I think that suffering itself connects people in ways that other aspects of life cannot,” he said. “Through the text, Nick has come to know that he is not the only one that suffers from cerebral palsy, that we all suffer alongside him, but there is beauty even in the pain. I hope people make that connection and that people see him, and others who live with a disability, as more than their affliction.”

Christopher Capozziello
"In November 2009, Nick underwent Deep Brain Stimulation Surgery (DBS). 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. DBS is cutting-edge science, but it looks like medieval torture. They shave you bald and rig you to a stereostatic frame that holds your head steady while they drill through your skull to insert electrodes for a 'brain pacemaker.' Once they switch the implanted device on, it delivers tiny electrical shocks to your brain, gradually retraining your whole nervous system to relax your muscles."

Christopher Capozziello

Christopher Capozziello
"I don't see my brother like this often. Even when he’s in the middle of a cramp, Nick never looks this powerless and afraid. After his surgery, we all wondered what would happen—whether everything he’d been through would be worth it."

Christopher Capozziello

Christopher Capozziello
"Three days ago he was in the operating room. Today, Uncle Karl, Aunt Dot, Mom, Dad, Deana, Papa, Nick, and I are having Thanksgiving dinner together. He’s been through so much in the last month, and we’re all sitting here, together, enjoying a meal."

Christopher Capozziello