Title: The Distance Between Us

Photographer/s: Christopher Capozziello

Date of publication: May 2011

Dimensions: 7 1/2 x 10 inches

Edition size: 2

Type of binding: Hardcover, Smythe Sewn Binding with Silver Foil

Number of pages: 107

Type of paper: Lumijet Matte Two Sides

Number of pictures: 75

Type of printing: Inkjet

Language: English

Category: Artist Book

Summary: Over the last ten years I have been making pictures of someone very close to me, but it was not until recently that I disclosed the photographs I have been making of the young man with cerebral palsy are of my twin brother Nick. By sharing who he is, I have seen first hand what suffering can do. It unites people in ways that other aspects of life cannot – creating bonds of solidarity, and making us more keenly aware of the experiences of others.

Suffering raises countless questions. From time to time, someone will ask if I feel guilty that I’m the healthy one. I do. I look at Nick, and am constantly aware of the differences between us, wondering why he has to be the one who struggles on a moment-to-moment basis. It stirs up this process of grieving that never seems to end, like one long lament.

We grew up with this together, but it was not until we were school-aged that I started to see the differences between us. We would be out throwing a baseball or playing basketball with our friends and that much physical activity would trigger a cramp. Unable to walk and barely able to move or communicate, I would grab hold of his arms, and the others would grasp his legs carrying him inside, then taking off his shoes, and putting him in bed. Often times his cramps would turn spastic and all us would have to hold him down at once — Mom and Dad, our sister Deana and I – so he wouldn’t hurt himself. His arms and legs would flail wildly, sometimes hitting himself, sometimes hitting us. His back would arch, his head would rise up and then come crashing down onto the wood floor. His jaw would open wide and then clench down tightly, sometimes on his tongue.

Nick recently underwent brain surgery (DBS) to help curb the side effects of his CP. The next year-and-a-half will show us if anything will change for Nick as the doctors make minor remote adjustments during office visits to the electrical current that runs through the wiring into his brain.

This is our story to tell, and as we get older, we experience different levels of loss as CP 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.

Date and place of birth of photographer/s: May 12, 1980, Milford, CT, USA

Website: www.chriscappy.com or www.aevumphoto.com

Donated by: Christopher Capozziello

iPL Notes: Received at Review Santa Fe 2011.

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