Christopher Capozziello was born five minutes before his fraternal twin brother, Nick. While other twins might jokingly pull rank on each other, in the Capozziellosâ case those five minutes altered the courses of their lives.
Nick wasnât breathing when he was born and developed cerebral palsy. While Christopher, who goes by Chris, hit all of his developmental milestones on time, Nick lagged. By the age of three, their differences were clear.
âEverything is slow for Nick,â Chris said. âItâs like somebody took time and just turned this wheel that made everything sort of slower for him. Slower in speech, slower in comprehension, slower in movement. He understands enough about the world to know what heâs missing.â
Chris doesnât remember a time when he wasnât aware of the differences between them, but as a child, he didnât find it strange or all that difficult. It was the only world he knew. After all, they shared so much (including a bedroom for 26 years â" Chris got the top bunk).
But as Chris got older, he started to notice that his family was different from others. When the twins were outside playing ball with friends, Nick would cramp up and become rigid like a statue. Chris and his friends would have to carry him into the house. Someone would grab Nickâs arms while Chris took his legs, and they would haul him upstairs and put him in bed.
Nickâs seizures became worse as he got older. Sometimes they lasted for minutes. Sometimes the cramps lingered for days.
Chris, a freelance photographer who often works for The New York Times, has been documenting his brother for 13 years. He has compiled these photos â" along with raw, honest diary entries â" into a book, âThe Distance Between Us,â that is scheduled to be published this fall by Edition Lammerhuber. To pay for the printing costs, he is raising money through Kickstarter.
The book is a loving but unromantic look at Nickâs life and the way his struggles have affected Chris; their sister, Deana; and their parents, Ron and Karen. It portrays Nick as a person who has a disability that affects how he lives, but doesnât define who he is.
Chris sees his brother as friendly, outgoing, questioning and very funny.
âI could bring him with me anywhere, anywhere, and he would talk to people and get people to open up, probably in different ways than I can,â he said. âHe is somebody who has a beautiful sense of humor, and people react to that. Nick is someone who is actually happy, which is something that I struggle with. But heâs happy.â
Last week at the dinner table, Nick told Chris and their parents that, despite the challenges, he doesnât wish he had grown up without cerebral palsy. He realizes that without the condition, he would be a different person.
But if you asked Nick on the wrong day, Chris said, you might get a different answer.
âHe might say, âI know I might be a different person, but I want things to be different. I want to have a job, I want to be married, I want to have a girlfriend. I want to have children someday.â â
Chris worries whether Nick will be O.K. if those things donât happen. Yet, at 33, Chris is unattached and doesnât have children. When he was in relationships in the past, he sometimes felt guilty.
Guilt is a recurring theme for Chris. He wonders why he wasnât the one born disabled. And he admits that, even if there were an answer, heâs not sure either of them could handle it.
âI feel this guilt that this isnât fair for Nick,â he said. âI donât know what thatâs supposed to even mean, but it makes sense in my head, because heâs the one who doesnât get to have these things and I get to more easily experience them.â
Still, itâs clear Chris loves Nickâs company, and they hang out often. Last year they drove across the United States. The book includes photographs and written accounts of that adventure by each of them.
It also features photos of a series of surgeries, and a difficult recovery, that Nick underwent to alleviate his cramps.
Chris says he wishes that he could take the burden from Nick, do âan eternal swapâ and let Nick live the rest of his life free of it.
But he canât.
While Chris wonders who Nick would be without his disabilities, he is equally curious about what kind of person he would be if Nick had been born differently. He pondered that at one point during their road trip.
âI look over at him, reclined in the passenger seat, having slept off a cramp,â Chris wrote. âHe looks peaceful, strong even. Itâs like heâs some different version of me, I think. Then I wonder if my brotherâs suffering, in the end, has taught me how to live.â
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