The Distance Between Us: photographing my brother's disability - in pictures

'Sitting on a fire hydrant in New York City, Nick tries to relax from a cramp. While we wait for him to finish his cigarette, a passing woman glanced at me, then down at Nick, who looked up slowly and grinned' Photograph: Christopher Capozziello

'She fleetingly returned his smile, and he took another drag with the fading smirk still on his lips' Photograph: Christopher Capozziello

'You can’t test for cerebral palsy. It’s less a defined condition than a set of symptoms, the aftershock of an explosion no one hears. For Nick, that explosion came at birth' Photograph: 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' Photograph: 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' Photograph: 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' Photograph: 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, one­key voice of his: “Here she comes, Lord help us all.”' Photograph: Christopher Capozziello

'I sometimes wonder why God put me on this earth the way I am,' he said. 'It feels like he doesn’t answer me, but I never get angry at God because if I didn’t have cerebral palsy I would be a different person' Photograph: Christopher Capozziello

'He's having deep brain stimulation surgery next month, something that doesn't seem real. The idea of him being better seems completely impossible to me. Maybe these cramps will one day be something of the past. Maybe one day Nick and I will look back on these photographs and he'll be completely different' Photograph: 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' Photograph: Christopher Capozziello

'In the days after the surgery, Mom has to change his bandages. When she rips them from his head, Nick screams' Photograph: 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 – whether everything he’d been through will be worth it' Photograph: 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' Photograph: Christopher Capozziello