As in any unspeakably difficult situation, one begins to question life’s fairness. Cerebral palsy, as portrayed in the photographs by Christopher Capozziello, takes hold of the body in ways that are simply unjust. It leaves the person directly affected by the disease contorted, exhausted, and practically lifeless, both literally and figuratively. And for Capozziello, the question for why this has happened is followed by why it has not happened to him. Thirteen years ago Christopher Capozziello began photographing Nick, his twin brother who suffers from cerebral palsy, as a way to explore his feelings of guilt as the healthy twin, using photography as a type of therapy. What began as private photographs for personal viewing, later became a moving documentary series. The Distance Between Us, a 200+ page hardcover book, shares the Capozziellos’ personal battle with this disease, one that afflicts so many others.
The beginning of the book deals with the jolt from normalcy one second to the debilitating cramps and seizures that plague the next. The grainy black and white film enhances the stark reality of the struggle that Nick endures physically and mentally. What makes this book stand out is that there are two protagonists; it is the photographer’s struggle as well as Nick’s. Christopher explains that these pictures, for him, began merely as an outlet in which he could bring to light the issues he had with faith, fate, and equality. He explores the sadness of the medical emergencies, surgeries, doctor appointments, and treatments that his brother has to endure. At the same time, his photographs bring hope for a cure, hope for the future, and hope to one day bypass the hardships that occur from this illness. Although Nick suffers from the symptoms daily, Christopher somehow finds ways to show the peaceful and playful side of his brother. Nick’s outer shell is tragically torn by disease, but the Nick inside finds some path toward growth. He even ventures to say that without this disease he would not be who he is today, and for that he is, incredibly, grateful.
As the book progresses, Christopher finds answers to his own questions, and he realizes that his appreciation for life is a direct result of his brother’s disease. In the final pages of the book, the two brothers journey across the United States, both making pictures, both finding adventure along the way, and both undergoing their own emotional journeys. Color photographs are introduced, and fittingly the mood lightens. It becomes a story less about the physical struggles of cerebral palsy and more about the love that two brothers share regardless of the ruthlessness disease.
Accompanying the photographs, the text of the book contains stories by the author about past events and memories, which coincide with the narrative. As the pages turn, the reader’s mind joins with the voice of the author, forcing the reader to share in Christopher’s most intimate questions about why Nick’s life is a struggle: “Is it fate or is it chance or is it just bad luck?”
The Distance Between Us is an eye-opening look at the private struggle that comes with a lifelong illness. As the title suggests, it documents how these twin brothers come to close the distance between them as they both unflinchingly face Nick’s cerebral palsy and confront Christopher’s emotional struggle with why he was born healthy. The true beauty of this book and with the life it encourages is both its fearless look at living the struggle and with its leaning into hope.
The Distance Between Us is published by Edition Lammerhuber and is available from ChrisCappy.com.
This article first appeared in Issue 2.
Amanda Hite is a freelance photographer and writer. She is fluent in Spanish and travels the world.