BETWEEN A ROCK AND A SKITTLE
I returned to Wilmington, uncertain as to whether I would continue with the project. I had gotten some cash for Christmas. I gave everyone old books. I rented a small car and drove to Craig’s services in Greensboro. His ashes were buried next to his partner Wally Epsom. When I saw the balloons released at the gravesite I knew that I had to continue.
Kathy Register from Camp Carefree was there with her husband Charley who was severe factor VIII and HIV negative. He had had an inhibitor and escaped the bug by not using any treatments. He had severe joint damage and good teeth. I called them and stopped by their house in Durham on the way back to Wilmington and gave them a copy of the script which I always carried with me. I had a few changes to make but both Kathy and Charley agreed to do the film.
I stopped by Craig’s apartment in Carey and BG was there with Craig’s family, including his father the minister.
“I loved my son,” he said, “I didn’t understand the Epsom. My son’s name was Craig Nelms. I just didn’t agree with his lifestyle.” I could picture Craig’s father in the pulpit with a voice as smooth as silk, believing completely every word he said and not saying it unless he believed it.
“It wasn’t a lifestyle choice for Craig,” I said, “It was who he was.”
Craig’s father read some of Craig’s poetry to the small gathering. The words of the dead son through the silken voice of the father in the silence of the requiem for a friend descended like rose petals giving the air the sweet fragrance of spring yet to come. BG stayed with the mother and father and sister, where for a few more minutes life was given to death while they went through what he left behind, the remnants of a “lifestyle,” in complete acceptance. I drove back to Wilmington to the cave to dig in somewhere between a rock and a bag of skittles.
I had gotten on line with my new computer and hooked up to Paul Vess’ hemophilia information service through e-mail. New Year’s Eve had a certain numbing effect without the use of any chemical stimulation thanks to AOL chat rooms. I was still new to the online thing and the free time skittled by like a stone on a pond without saying much.
After the first, with cutoff notices on my cutoff notices, a good Jewish friend from Baltimore contributed five hundred dollars to keep the phones plugged in probably because he felt guilt that his mother had overcharged me for a used laptop, and the Boss, Mark Scudiery of Hemophilia Resources of America sent another five hundred. Susan Resnik had bagels sent to me from New York by UPS so I had bread to go with the rice and dried beans. And BG was taking my calls again.
I tried to rev up the woman, Audrey Kates-Bailey from public TV to let me shoot “A Blood Story.” That’s what we called it to give it a name. I rented a car and drove to Research Triangle Park and explained how we would treat the material and gave her the list of questions I had come up with by playing Jeopardy with the script to make it easier on the participants to come forth with the information. Finally near the end of January it seemed as though something was about to break.
“You fax me the names and addresses of all the people that are in this, and I’ll give you a crew. It’s been approved,” she said. “This is your big break.”
I contacted everyone who was to be in the show and faxed her everything she asked for, and the next day she called me back and said that there might be a problem. Though approval had been given there was another person who should have been consulted, she said. I still believed that there was a strong possibility of it happening. After all, she had said that it was a Go with Roscoe. A month had passed and I had complied with every request. The following Monday, the day before we were to begin shooting, I drove across state to workout the logistics of the shoot with each participant. I stopped by the public TV station and the woman said that the other person didn’t believe that the public TV station should do anything about hemophilia unless it was a news item concerning a medical break-through or a cure. The story was of no value to them. It hadn’t cost her station even a phone call. It made me doubt her honesty about every promise she had made.
I called Ken Burns the Civil War documentary guy; someone on his staff said that they were already working on diseases and they were too busy with their own sickness.
I had the opportunity to watch a show produced by the public TV station. The topic was barbecue, Pork, the other white meat. The pig farming industry, like tobacco, was a big contributor to the North Carolina public TV station.
February hit hard with the phone bill through the roof and the fiasco of dealing with just another bureaucratic beast. I opened a piece of junk mail that offered seven-hundred and ninety-nine dollars pre-approved. I called the number and they said that they would send me the check in the mail. I called back later in the day and told them that I needed the money immediately. They sent me to an office in downtown Wilmington where they approved me for fifteen hundred and gave me the check right there. I switched to an unlimited internet service provider—Wilmington.net–Just reading the e-mail from Paul took all of the allotted time from AOL without getting into the hourly rate. Information about the Ricky Ray Relief Act was just one of the things that was invaluable from Paul. He also began sending out transcripts of the Institute of Medicine Hearings and I saw names and words of people testifying with whom I was now familiar. I kept the phones plugged in and continued to pursue foundations and the hemophilia industry, with a few positive responses from the industry, though only empty words. Two weeks later I also received the check for seven hundred and ninety-nine dollars in the mail, which I promptly cashed. I was falling behind in my rent for the cave with the Saint. I was in my survival mode, and the cost of continuing was only the cost of catching up.
One of the Foundations I had been hounding for six months was the phone company, Bell South. My contact told me that the new guidelines for grants were in and that I should submit a proposal. I went through my usual team of experts and we put together an information-packed page, careful not to hedge on any of the facts we wished to cover in the short story. We met the deadline and there was new hope. I thought we were a shoo-in after six months of groundwork with the Bell South foundation and over ten months on the project. I still needed a partner—someone in the area who wasn’t a long distance phone call away and might balance my easy-going nature which was wearing thin by the bombardment of failure. But I still saw the film being made and I knew what it would look like, though the changing words on the script only portrayed part of its evolution. As long as I could see it being made I felt that it would be.
July 24th, 2008 at 11:24 am
[...] Shaws Blog wrote an interesting post today onHere’s a quick excerpt I returned to Wilmington, uncertain as to whether I would continue with [...]