The Distance Between Us

Chris Capozziello's book documents his twin brother's struggle with cerebral palsy

For many years, Chris Capozziello would photograph his twin brother, Nick. Photographers do that sometimes. But after each shoot, he would just store the photos away. “For a long time, I would archive the pictures,” he says. “I couldn’t look at them.”

On the day they were born, Christopher was Capozziello Baby A, followed five minutes later by Baby B, who would be named “Nicholas.” The celebration was brief; doctors noticed Nicholas was not breathing and whisked him away. Soon he was breathing and everything seemed fine. But as the time passed, Chris would hit developmental milestones right on time — and months before his brother. When the boys were two years old, doctors gave gave Nick the diagnosis that would forever create differences between the two brothers: cerebral palsy.

There are varieties of the disability, all of which involve connection problems deep within the brain. Developmental delays are typical, as are severe muscle cramps that get worse with age. In Nick’s case, they can last for days — leaving him with few choices, unable to drive or to work in most jobs, living in the same room he and Chris shared for 26 years.

For years, friends told Chris that his photographs tell a compelling story. But he resisted.

“This is a story that’s right in front of me, but I always pushed it off. What can I say? My brother’s sick. I was not interested in talking about that.”

But as word spread about the set of photographs, Chris began to look at them in different ways, realizing that they allowed him to see his brother, their relationship, and underlying issues of faith in new ways. Since then the Chris has received notice in the photojournalism community, including recognition in various photography festivals, as well as a grant from NPPA to help develop a book from his photos of Nick.

Chris was recently able to secure a relationship with a well-known Austrian publisher, Edition Lammerhuber, to publish a 208-page book, The Distance Between Us, on October 30. Chris has started a Kickstarter campaign to help defray the costs of publishing. Launched on August 15, the campaign has a goal of  $16,000. Already the book and Kickstarter campaign have generated a lot of interest from old and new media outlets on both side of the Atlantic — starting with a story in The New York Times “Lens Blog” that published on the day the campaign launched.

Chris’s photographs are stark, startling and beautiful — intimate glimpses into a family’s coping with Nick’s condition as well as the limitations and prejudice that follow it. Accompanying the honesty of the images is the brutal honesty of the text, documented from journals Chris kept over the years.

“I don’t have the answers. Things happen and we don’t always get to know why. If God sat down with me and tried to explained why my brother has cerebral palsy, I don’t think I would want to know.”

“People assume that with projects this personal, it has to be cathartic,” he says. “But there have been times when it wasn’t so cathartic. It was detrimental in many ways.

“I had to work through some times when I was very angry at God. I was angry for a long time about Nick being the one who is struggling on a daily basis while me, his twin, lives a rather easier life than he does.”

Nor were theological issues only directed upward. Chris had been a longtime member of a Pentecostal church that taught that God’s miraculous healing was available to anyone at any time; all that was needed was the faith to “claim” the healing. One Sunday after services, Chris approached an elder in the church and asked why Nick still has his condition when Chris had prayed for his brother many times. The elder replied that Chris obviously didn’t have enough faith to enable his brother’s healing.

“I don’t think it’s my fault. I don’t think Nick suffers on a daily basis because of me, because of my lack of faith. I don’t think that.”

Soon after, Chris stopped attending that church. Since, he has concluded that miraculous healing is God’s work, done at moments of His choosing, not ours.

“I felt alone in my faith, because the people I went to church with looked at things differently than I do,” he says. “For a time I questioned whether or not I even had genuine faith. I felt very alone in it.”

Eventually Chris developed a friendship with a theologian, a man he photographed for a freelance assignment. Over time, they explored the story of Job together — Job’s questions and God’s eventual answers. Chris came to understand that even though God deeply blessed Job after he passed through his trail, Job was never given an answer to the Why questions. Instead, he trusted God.

“I don’t have the answers,” Chris says. “Things happen and we don’t always get to know why. If God sat down with me and tried to explained why my brother has cerebral palsy, I don’t think I would want to know.”

The Distance Between Us ends with a photographic and textual change of pace, documenting a cross-country road trip the two brothers took together last year. That section includes several pages of photographs and text produced by Nick, with his thoughts about the trip. As the book closes, the reader is left in a bittersweet pause, as if waiting for the next step of their journey. Two brothers born five minutes apart and living three miles apart today. Always tied together. Always separated by something they did not create and cannot control. Not knowing what’s ahead. But then, none of us do.

Chris Capozziello no longer asks, “Why?” Instead, he asks, “What’s next?”

Next Story


With broken wings

John White and the Chicago Sun-Times