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.
I want answers. I want explanations for why some suffer and others do not. I want to know why some get better while others get worse. Is it fate or is it chance or is it just bad luck?
Initially, telling our story wasn’t something I set out to do; but over the years, one picture led to another, and a story has emerged. The time I spend photographing my twin brother has forced me to ask questions about suffering and faith, and why anyone is born with disability. Nick has Cerebral Palsy.
You can’t test for CP. 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. When he was born he was not breathing. Despite it, Nick is able to walk and speak and function on a fairly normal level, except for the fact that at any moment his muscles may spasm and cramp. When this occurs, his body contorts and locks, and he is unable to talk. A cramp may last minutes, or hours; sometimes his body is cramped for days.
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.
Nick hasn’t able to do much lately because he’s been getting bad cramps again. He came out of the room tonight, his knee turned in, barely able to walk. It was hard to look because it looked like it was broken at the knee. Mom and Dad helped him into bed, straightened his leg against the end of his bed, and gave him medicine that should have relaxed his muscles.
When I look at my brother I feel lost. Nick always has to struggle. He probably always will.
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.
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.
Our kindergarten teacher waited for a day when Nick was absent to tell the class about him – about how things were different because of his cerebral palsy. She explained that sometimes he’d need to go home because of the pain, which made it so that he couldn’t walk normally. “But different doesn’t mean bad,” she said. “It just means different.”
He’s lying on our grandfather’s bed, trying to sleep off a spasm, when we hear a loud bang. Dazed as he began to wake, Nick fell and is stuck between the bed and the window.
We were raised Catholic, so the idea of a loving God has always been a part of our lives. Recently I asked Nick if he ever gets angry at God.
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.
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?’
He has been asking me to go to the Knight s of Columbus for a while now, just to hang out, play some pool, and have a beer. Tonight it finally happened. It was great to just hang out with him, make a few pictures and spend some time relaxing with my brother.
When I look at him I feel lost. I wonder where the justice is in all of this. I am the brother who survives and has choices, and he is the brother who suffers and does not.
Growing up, I could never find the words to express my feelings, but I always wondered if my presence in the womb might have somehow made me responsible for what happened to him. It was a fear I felt I could never tell anyone as a child, yet as an adult I still feel it just the same.
In the end, I can’t answer the questions I’ve been asking myself our entire lives. But, after all these years, instead of asking why, I am starting for the very first time to ask what’s next for us. The pictures have unexpectedly begun to help me move past my own grief, past my fears, and past our family to find out what lies ahead for Nick and me. I don’t know how the future will look, but soon it will be just ours to figure out.
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You can support the book project on Kickstarter.
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He has been asking me to go to the Knight s of Columbus for a while now, just to hang out, play some pool, and have a beer. Tonight it finally happened. It was great to just hang out with him, make a few pictures and spend some time relaxing with my brother.
Her name is Rachel, and at one point she tells him to not look at her feet. Afterward he tells me with a grin as wide as ever, “I wasn’t looking at her feet!”
We are out tonight, and the night ends early. He is no longer able to walk or speak because of a cramp.
Nick is having Deep Brain Stimulation Surgery next month. They’ll drill two holes in his head, insert wires into his brain, and install a pacemakerlike device in his chest. It’s hard to imagine him facing these risks, but it’s even harder to imagine him being better.
In the days after the surgery, Mom has to change his bandages. When she rips them from his head, Nick screams.
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.
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.
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.
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.
Bio
Christopher Capozziello (born 1980) is a freelance photographer. His work is primarily about inviting the viewer into personal stories in order to understand different facets of life.
Christopher’s work has been honored by World Press Photo, Pictures of the Year International, the Alexia Foundation, the Aftermath Project Grant, the National Headliner Awards, the China International Press Photo Contest, Days Japan, PDN Photo Annual, Photolucida’s Critical Mass, Review Santa Fe, American Photography, the Golden Light Awards, Communication Arts, the Magenta Foundation, Blurb Photography Book Now, National Press Photographers Association, Px3 – Prix de la Photographie, among others. His work on his twin brother was given an honorable mention for the Santa Fe Prize in photography and he was awarded the Berenice Abbott Emerging Photographer Prize. Christopher’s images have also been shown in both group and solo exhibitions throughout the U.S. and abroad.
His clients and publications include AARP Bulletin, Christianity Today, The Dallas Morning News, Days Japan, Education Week, Le Monde Magazine, L’Express, The Globe and Mail, The International Herald Tribune, Newsweek, The New York Times, The New York Times Magazine, Open Society Institute, Samaritan’s Purse, The Sunday London Times Magazine, TIME, Virginia Quarterly Review, The Wall Street Journal, World Vision, and others. He has worked for The Sun Herald in Gulfport, Mississippi, and The Dallas Morning News in Dallas, Texas.
He currently lives in Milford, Connecticut, three miles from his twin brother. “The Distance Between Us” is his first book.
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Christopher Capozziello
A touching project…it sunk my heart.
I cannot imagine how this affects the entire family and not just you Christopher.
Wishing you all the best.
Powerful project!…
The best for you and your brother.
Congratulations Christopher
Thanks for this. Photographing something so close, and so painful, is difficult. And yet somehow it helps us deal with it, and validates our pain. It is also an expression of love. His pain is your pain.
Good luck with your project. I hope it helps you both come to terms with the in-justice of it all. I hope it helps you forgive yourself.
Christopher, so damn good. Palpably intimate. Honest stuff. You honor yourself and your bro with this work. I see he has a deep brain stimulator implanted. I hope it helps. Bravo and I know this will take you far….at least in terms of healing.
Very powerful,Christopher
Image #9,as the essay is currently laid out (Nick in bed with bandages on his head),is spectacular
and haunting and will be one of the few images that will stay with me out of the 1000’s I’ve seen
this year. His eyes so many emotions that one cannot look away.
You should check out Christopher Hitchens.
Life is not fair and there is rarely justice in the end. Accepting that reality early in life will make things much better for you by allowing you to give up magic thinking and get on with your life. As for the essay, I think it is good photography; but, I don’t know that shines any new light on an old subject.
Chris, we share a number of things, among these the reason to photograph. Some questions will never be answered, the feeling of responsibility and guilt will, I think, never go away, but we learn to live with it.
Focusing on the day to day normality is the best way, and you showing us with your pictures exactly this is great.
I’m looking forward to see the whole book, and wish you and Nick the best!
Thank you!
Jim. No, life is not fair and justice is all too often a commodity, but there is magic everywhere.
and Just because your dreams may not come true is no reason to stop dreaming.
Well said.
JOHN GLADDY
that is the single wisest thing you have ever written here…thank you
cheers, david
I must have been drunk.
“..by allowing you to give up magic thinking and get on with your life. As for the essay, I think it is good photography; but, I don’t know that shines any new light on an old subject.”jim powers
the new light on an old subject always comes from the continual re-telling, for in the stories of others, whether in grief or in celebration, we find ourselves renewed and anew, because others’ stories are our stories and they’re all the same, only the grief and celebration looks different. and that magical thinking comes from just that: the conjuring of the moments or the words to set that darkness ringing again. for it is in the willingness to express and to share and to build upon with lighted love that all that alchemy, including that of which we cannot understand, begins to pop and foam and fizzle into the waking beauty of things….
one can and should love and dream without the need to have it realized, for it is the living and loving itself that transforms and makes the greatest solution….there are no solutions nor answers but in the living and loving itself….
an, um, yea: the essay, magnificent and inspiring, (like much of Christopher’s work) not because of the difficult dividing reality of the subject matter (thought that too) but because of the bone at the center of its heart: the shuttling of the life of a person determined to yield life in all its living, and against profound physical odds as they…
the refusal to give in or give up…
aint that what life does anyway, it comes raging full tilt…why not we, its children and hungry ones….
thanks for sharing christopher
I have seen this essay in a few other places..
I think some of the images here in this edit are new to me.
I always love this work..
Some of these images really stick with me and I will find myself
thinking of them weeks later.. That doesn’t happen with many essays
Christopher, when I see magnificent photos and read honest captions like you have brought to the world in telling Nick’s story, I am reminded that the “why” is less important than the “who” – who Nick is, who you, his twin brother, are, who your parents are, and who comes into his life as friend, teacher, medical provider, helper.
These are among the most powerful photos I have ever seen. They show with unremitting clarity what life is like for another. In many ways they feel like self portraits. I am in awe of your courage and Nick’s courage. You both live the lives you have been given with no excuses, wishful thinking or half truths. You are the real deal and what else is there? In sharing Nick’s life with us, you give us the courage to follow his example and be who we are with no excuses, wishful thinking or half truths. I thank you both for this gift and wish you well.
Patricia
I love what you have just written here. You obviously live it.
“live the lives you have been given with no excuses, wishful thinking, or half truths.”
This, and John Gs
“No, life is not fair and justice is all too often a commodity, but there is magic everywhere. Just because your dreams may not come true is no reason to stop dreaming. ”
should be on all our bathroom mirrors.
Wow! My brother! No, your brother. My brother was born and raised healthy. The affliction came later. Yet, your brother is my brother. You are me and I am you, even though we are not at all the same.
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