Christopher Capozziello is a photographer. For 13 years, he's been snapping pictures of his fraternal twin brother, Nick. In one of them, he's smoking a cigarette. In another he's singing karaoke or playing a friendly game of pool. Those stand in stark contrast with the ones showing Nick lying on the floor dealing with severe pain he cannot control. Nick was born with cerebral palsy. Chris wasn't. A photo-essay entitled "The Distance Between Us" tells their story.
In this short Kickstarter film, aimed at funding the book titled after his photo collection, Christopher discusses his own issues living with a brother who suffers from an illness he was spared from.
Christopher talks about spending his entire life "dealing with the grief of being the healthy twin" and his photography has been a way to deal with the reality of living with a brother who experiences a level of pain and deep suffering he will never experience.
I spoke to Christopher about his experience and his photos. What he had to saw was tremendously touching.
"There are many images of him in the book struggling in different ways, but the hardest ones for me to look at are the ones where he’s having seizure-like cramps. They don’t happen often, but they started to flare up after the brain surgery."
"For a period after the surgery, things got worse. Nick experienced spastic, seizure-like cramps that were very dangerous."
"I had a very hard time hoping things would change for him. The danger with hope is that it can let you down."
"The seizures were scary for all of us because he has no control over his body. It’s like something possesses him: his closed fists might punch his face or his 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 looked like he was being stretched out on one of those old-fashioned torture racks. Whatever his body was doing, it was accompanied, at some point, by an awful cry that sounded like it was coming from somewhere deep within his soul."
"Why does it happen to Nick and not me? Why does this happen to anyone? The pictures ended up forcing me to deal with these questions."
"There are moments I struggle with photographing and including in the book, and sharing in general. Those moments made me feel like an intruder in my own family, and 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 to put them out in he world."
When Nick saw the book for the first time, he couldn't finish it and burst out in tears. He found the pictures incredibly difficult to see and the book harder to get through.
"Nick can read, but he reads much slower than most. It’s like someone turned down the speed of time for him; making everything far more drawn out for him."
But there are pictures that Nick loves from the art project. His favorite one shows him dancing with a woman called Rachel, a woman he met at a dive bar in San Juan Capistrano.
"I think for him, he digs the fact that he’s dancing with the prettiest woman in the bar that night. She didn’t dance with me, or with any of our friends, she danced with him. And I think he knows he’s got more guts than I do, because I wouldn’t ask her to dance in the first place. I’m too shy. I wonder for him if it’s a sort of one-upmanship in a way, which is how many brothers are. That night, he got the girl!"
But it wasn't just about the girl, it was also "an image of him doing something completely normal," Christopher says. "Set against images of him twisted up on the floor in pain, this one shows him living life, it is for him, and for me, a bit of fresh air."
Christopher's favorite photograph? The one he took of Nick right before he smoked a cigarette.
"Nick’s wearing that leather coat of his, looking like a rock star. Looking like to most who don’t know about him that he’s this cool guy, about to flick his bic, and smoke his Marlboro Red. If you don’t know Nick, the tension in his hands in that photograph isn’t necessarily realized until you know he has cerebral palsy. He looks rather normal in that picture. Hip even."
In the end, Christopher realized that his art project wasn't so much about cerebral palsy as it was about brotherhood. He says it became about "sharing our story as brothers, being open about our laments, and sharing how I began to move past the guilt I carried for being the healthy twin."
Even though Nick underwent brain surgery almost four years ago now, Christopher says that his future remains uncertain. He still remains confident that there are brighter days ahead for his brother. "I hope that one day we will see the changes we’re waiting for. Until then, he’s more like a work in progress. I don’t know how the future will look, but soon it will be just ours to figure out."
For more pictures and information, visit Christopher's website.