Christopher Capozziello
For more than thirteen years, photographer Christopher Capozziello has taken pictures of his twin brother, Nick, who has cerebral palsy. The photos were not intended to be published and, for a long time, Capozziello didn't even look at them himself. But over time, it became clear that Chris and Nick's story was a powerful one, that they eventually decided to share.
Capozziello has collected his photographs and writing into a book, "The Distance Between Us," to be published later this year. The work is an honest depiction of Nick's everyday challenges with cerebral palsy, but moreover, it is a documentary about the relationship between the brothers, their family and the world they live in.
Read on to see selected photographs and text from the book. Learn more about the project on Capozziello's Kickstarter page.
In this photo, 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
The time I spend with him, looking through my camera, has forced me to ask questions about suffering and faith and why anyone is born with disability.
Christopher Capozziello
The way I remember it, there was such coldness in the air that it cut right through us on that January morning in New York City. Nick leaned against a fire hydrant and lit up a Marlboro Red, trying to relax from a cramp. While I waited for him to finish his cigarette, a passing woman glanced at me, then down at Nick, who looked up slowly and grinned. She fleetingly returned his smile, and he took another drag with the fading smirk still on his lips.
Christopher Capozziello
When I ask if he needs help, he says quietly, firmly, "No. I can do it myself." So I stand back and watch him struggle up the stairs.
Christopher Capozziello
After all these years, there is still a part of me that is shocked and frightened, as if
for the first time, when I see his body, looking like a twisted and mangled car after a severe accident.
Christopher Capozziello
Since graduating from high school, Nick has begun smoking. It's a way for him to connect with others; which is important to him, because he doesn't have many friends. Nick has tried quitting, and because he is also diabetic, risk of stroke and heart disease increases tremendously.
Christopher Capozziello
He is shaky tonight, limping to the toilet. Unable to keep his balance, he kneels down to urinate. I make a few pictures, and, hearing the click of my camera, he turns slightly, furrowing his brow. I keep clicking but let out a laugh, hoping he will too. He does. It
Christopher Capozziello
One night I walk into his room to find him leaning out the window, smoking a cigarette. The creak of the door startles him, and he drops the cigarette. So I head outside to make sure it didn't set the dry leaves on fire.
Christopher Capozziello
When I look at my brother I feel lost. Nick always has to struggle. He probably always will.
Christopher Capozziello
We're at a family picnic and his movements are slow, he's walking with an exaggerated limp, and he cannot talk clearly. I end up taking him home as it worsens.
Christopher Capozziello
This is one of the last images I made of my brother before moving to Mississippi for work in 2006. I remember thinking, "Is this what I'm leaving him with? Just his hamsters to keep him company?"
Christopher Capozziello
Nick saunters to the woman holding the karaoke mic, tilts back his cowboy hat, and waits. When the music kicks on he smiles and sings along in that monotone, one-
Christopher Capozziello
Nick is having Deep Brain Stimulation Surgery next month. They
Christopher Capozziello
I'd been up late last night, editing, toning, and transmitting an assignment. So this morning, I accidentally turned off my alarm, took shelter in the warmth of my blankets for longer than I normally would. I probably needed the rest. I even had a dream, the only one I can remember recently.
In it, I saw a man on a busy city street who looked like Nick, except he was walking without any sort of disability. I'm always doing that, rewriting what is supposed to be Nick's life. I lean over and ask Mom if she hopes things will change for Nick, for us. She puts her book down. "No. I can
Christopher Capozziello
The doctors say the surgery probably won't stop all of Nick's cramps, but it could significantly decrease their effects. This is cutting edge science, I think to myself. Except it looks like medieval torture.
Christopher Capozziello
Even with yesterday's complications, and even with my persistent fears, I tell Nick he's got to try again. "We'll be with you the whole way," I say. "You can't just let them do half the surgery. This could actually change things."
Christopher Capozziello
Hanging out with some frieds at The Knights of Columbus tonight, Nick removes his cowboy hat to reveal the shiny pink scars. Then he starts joking that he got an iPod out of the whole deal.
"Now I can listen to music anytime," he says. Right there, in the smoke
Christopher Capozziello
Nick's never been able to hold down a job. Most employers won't hire him because of the muscle spasms. No one wants to take that risk. So, most days, Nick can be found in front of his computer, surfing the internet or playing online games.
Christopher Capozziello
Even when he's in the middle of a cramp, Nick never looks this powerless and afraid. We all wonder what will happen
Christopher Capozziello
We are finally going home. I'm with him in the hospital bathroom, holding him up while he urinates. I joke at how big he is. He laughs. I need to see his smile.
Christopher Capozziello
Mom comforts Nick after his second brain surgery.
Christopher Capozziello
Cerebral Palsy makes the easy things in life difficult: eating, playing sports, holding a job, learning to drive, having a girlfriend. The hardest part of being Nick's twin is knowing that many of my experiences are outside his grasp. Yet he understands enough about the world around him to know what he is missing.
Christopher Capozziello
Christopher and Nick pose during a three-week road trip they took together in December 2012.