Chronically Hopeful

 

Phil Daquila
Digital Documentary Photography
December 2008

“Chronically Hopeful” tells the story of a North Carolina man’s trials living with severe Crohn’s disease, a form of inflammatory bowel disease with no known cause and no cure. Steve Parker, 43, of Wendell, N.C., near Raleigh, was diagnosed with Crohn’s in 1999 after numerous doctors failed to identify his illness. Surgery to remove more than a foot of colon ensued immediately, and many other operations have followed, including a colostomy in 2007. Parker suffers abdominal discomfort, pain and bleeding as well as emotional distress due to the unpredictability of Crohn’s. He is on what his nurse called a “very aggressive medical regimen.” Steve has worked since 2000 as the hazardous materials manager at UNC-Chapel Hill, supervising four men and carrying a large amount of responsibility for the safety of the campus’s labs, classrooms and offices.

Though he rarely speaks about his disease to his co-workers, Steve leans heavily on his wife of 17 years, Karen Parker. Their two sons, Dillon, 16, and Christian, 12, have almost always known their dad to be sick—but still usually available to them for a game of catch in the back yard, even when he is quietly hurting. Despite his daily battles with his body, Steve is a hard-working family man, and the more one gets to know him (as I had the privilege of doing), the more one sees how he summons enormous strength in the face of what he calls an “insidious” and “debilitating” disease. Steve maintains hope that one day digestive disease research will find a fix for him and others.


My digital photo project with Steve Parker took place over seven visits from Oct. 28 through Nov. 26, 2008. I spent three days at his home, two at his office including a tour of a new laboratory and twice in the hospital for his weekly injection of Humira and for a colonoscopy procedure. I shot more than 950 frames.


I myself have lived with Crohn’s disease since 1991, though I am usually in remission and have just a few hospital stays on my chart, escaping without surgery. I believe deeply in doing what I can to at least help others better understand it, and I think I can best do that with my camera and a microphone. Thanks to Steve and Karen Parker and sons for allowing me into their lives and to the medical professionals who also granted permission to help document this story.