Chris Capoziello -The Distance Between Us


When there is suffering we often want to know why. We want answers.

I want answers.

I want explanations as to why some suffer and others do not. I want to know why some get better while others get worse. Is this fate or is this chance or is it just bad luck?

How are we to deal with suffering? I have many questions and only few answers.

I would like you to meet my brother. I have been drawn to photographing him for as long as I have been making pictures. 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 disease. Nick has cerebral palsy. The pictures have been a way for me to deal with the reality of having a twin brother who struggles through life in ways that I do not.

Sitting on a fire hydrant in New York, 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. She fleetingly returned his smile, and he took another drag with the fading smirk still on his lips.

Today I drove through the snow to come and help Dad bring papa to a doctor’s appointment. When I arrive, I do what I normally do and head to Nick’s room to say hello. He’s in bed with a cramp. These last few visits, we haven’t been able to talk or spend any time together because he’s had a cramp each time.

Smoking has become a way for Nick 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. 

When I visited yeserday 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.

In November 2009, Nick under went Deep Brain Stimulation Surgery (DBS). For the first time, our family held  out hope that things would improve for him. The doctors said that while the surgery might not completely stop his muscles from cramping, it could significantly decrease the effects of the cramps. DBS is cutting-edge science, but it looks like a medieval torture. They shave you bald and rig you to a stereotactic frame that holds your head steady while they drill through your skull to insert electrodes for a “brain pacemaker.” Once they switch the implanted device on, it delivers tiny electrical shocks to your brain, gradually retraining your whole nervous system to relax your muscles.

Yesterday afternoon Nick got out form his third surgery. They were able to successfully implant the medal ledes into the the left side of his brain and run the wires down his neck and into his chest where they attached them to a brain pace maker. We’re finally going home. I’m with him, in the bathroom, helping to hold him up while he urinates. Earlier, when I help him in and he sits down, I joke at how big he is. He laughed. I needed to see his smile.

[Image, video and text all from chriscappy.com]

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