SNAKE DANCE
When I returned to the Camp, as planned, it was not totally unlike coming home to the old neighborhood, a deja vu kinda thing. After all, I had been there a few hours before. I had fresh memories and didn’t feel like an intruder. And like going back to the old neighborhood, I could maintain the status of adventurer, because I had embarked on a journey, accomplished my task, and returned, self-contrived mythological stuff to find meaning in life. Seeing everything as an adventure provided me with the tools, using the writings of Joseph Campbell as my guidebook, to move forward into the forest where there was no marked path, everything was discovery. Paul Vess and his family had left, but Wayne Ward was still there, so there was still a connection.
In another building “The Snake Man” had set up a theater of snakes in glass-fronted cages. Rattlers and pythons and even an asp, the type of snake that killed Cleopatra, posed and danced for us. It was there that the children had gathered. This show, like many other treats and perks, I was to learn, was something that the home-care companies funded as their way of giving back to the community they served. Some of the boys had hemophilia, but the show was for everyone, the carrier daughters and healthy sons and daughters alike. The adults got as much fun and fascination from seeing the snakes close up and learning about them as did the children. I had a great time. And then I got to play with the kids. We passed a soccer ball around a circle in the back of the hall. This had been my first contact with children in North Carolina since I had arrived. I didn’t know which ones had hemophilia, they were all alike to me. I saw them all as returning spirits that had been here before, starting the game anew. Everyone eventually left the snake hall, except for me and the children. Around and around, we passed the ball, around and around, letting it fall, around and around the ball bounced.
The parents finally came for their children and I ventured back onto the grounds. Wayne was speaking to a boy in a wheelchair. SPEight was his name. He was one of many who had been infected with HIV from blood products. He had full blown AIDS. He looked more like an aging holocaust survivor than the young man he was. His circle stood close by him, protecting him from any outside intrusion. After all, he was dying because of an outside intruder in the guise of something that was supposed to have made his life easier, the same stuff that made it hard for me to tell which children had hemophilia and which children were healthy. It was a blood clotting thing. SP8 performed an imitation of a turtle; his protective circle of people glowed with warm smiles because of the bright light in their midst.
Vickie worked for Caremark a major home-care company and was the mother of a teenage son with hemophilia and AIDS. Brent had sent her one of our proposals and it had gone no further. I recognized the name on her tag and introduced myself and, of course, gave her an updated proposal. I was there on business. Vickie introduced me to Kathy Register, an exotic, sexy woman. I thought at first she was available—a great find on a weekend retreat for families with hemophilia. It turned out that she was an activist in the community, married to a man with severe hemophilia who hadn’t attended the retreat. So much for great finds—that was totally out of bounds for me. The women did, however, take me for a walk through the grounds of Camp Carefree, and they grilled me. The King, Dr. Brinkhaus was my password since he was such a legendary figure; at the mention of his name they began to open up about their community.
“The three things that older hemophiliacs have in common,” Lana Turner told me, “are the limp, the humor and they all have beautiful eyes.” She was devoted to her husband.
We walked off into the woods and relaxed. I stated my case and my work. It wasn’t a dream I spoke of, the film we were trying to make. I have dreams when I sleep, I explained; in my dreams I fly, the reality of that world, and I enjoy that also. But waking consciousness expresses itself in the activities it pursues, sincere efforts toward goals on this plane of reality. In my dreams I fly, the reality of that world, and I enjoy that also. When I’m awake I work and I look for my dreams to help me. This is my project and the way I live my life. I want to do something of value. “It sounds like a big project,” Vickie affirmed.
By the time we returned from the forest, the barbecue on the hill was about to begin. Lyle Lovett sang from a boom box in the distance, “To the Lord, let the praises be, it’s time for dinner now, let’s go eat. We got some beans and some good corn bread, now listen to what the preacher said.”
As the gathering commenced and we turned toward the pavilion, I was approached by a short, compact woman with wild hair and bright red lips. “I want to talk to you,” BG said with a sharp husky voice that I wasn’t about to argue with at that moment. I’m certain I saw the llama’s ears perk up. With the number of husky voiced women I had been coming upon in the South I was beginning to believe that there was something in the water. BG worked for the same home-care company as Wayne Ward, the one that had been an original contributor. I don’t know what happened, how it happened, or why it happened, but I had broken through: Someone finally came to me without my having to hunt them down. Unanswered phone calls and letters were part of the reason Brent gave up. The rejection had been disheartening. But BG, Linda Robertson seemed ready to listen.
We joined the small group of those who remained, including a few of the children with whom I had played catch, and walked up the gentle hill where the food was being readied. I stood in line with BG, waiting for the burgers to be cooked.
“I want mine burnt on the outside and raw on the inside,” she said. BG seemed to know everybody there. She was new to me. I hungered for that access, for that thread into the hemophilia community We grabbed our burgers and beans and some good cornbread and Kool Aid. BG also grabbed a cup of ice, without Kool Aid, and we sat at a table in the center, facing into the pavilion so anyone who wanted to listen could do so. I was grilled again (burnt on the outside and raw on the inside). I spoke seriously, with no ulterior motives. Having arrived in a nice car helped my credibility. I explained to BG what we had accomplished so far in the project: access to the King, Dr. Brinkhaus and Susan Resnik and her dissertation; a budget had been drawn up thanks to the help of the independent film maker in Charlotte; a commitment from a director of photography and a vision of what we wanted to portray on film.
BG told me that she had spoken with Craig Epsom Nelms. She said he was sorry he couldn’t make the meeting, and he had mentioned what a good time he and I had had over the telephone. We ate well. There was watermelon for dessert. BG had ice cubes for dessert.
“I taught Craig how to infuse himself at Hemophilia Camp in South Carolina in 1979. I probably infected him with HIV,” she said while crunching on an ice cube.
This was common in the late seventies and early eighties—many women infused friends and sons with clotting factor and HIV, all the while believing that what they were doing was safe and would improve the lives of the children, giving them “normal” childhoods.
BG was hired by the home-care company because she had been an outspoken activist in the hemophilia community. Her only son was an HIV positive hemophiliac. Rock was living with his wife in South Carolina. BG and her husband also had an adopted daughter. BG considered herself a “mutant” since there had been no previous hemophilia in her family. That’s what happens in thirty percent of the newly diagnosed people with hemophilia, spontaneous mutation of the hemophilic gene, causing the deficiency of factor VIII or factor IX. The hemophilia community was so thinly dispersed and secretive that home-care companies hired agents within the community to try to develop trust, since many in the community felt victimized by the concentrated factor industry and its delivery system.
We sat under the pavilion at the picnic table until dusk, when the mosquitoes began to dominate everyone’s attention. A planned campfire was canceled because of the bugs. We left the llama to fend for itself on the side of the hill, and retreated to the cafeteria. I drank coffee and smoked cigarettes while BG smoked cigarettes and chewed ice cubes as though they were hard candy.
“This ice cube thing,” I said, “is this a hobby?”
“I like ice cubes,” she said defensively, “I just like ice cubes.”
“I’ve heard about obsessive compulsive behavior on the radio. Is sexual frustration a problem for you?”
“I just like ice cubes,” she said a bit more intensely.
“I think there’s some kind of treatment for that.”
She blew me right off. “Don’t worry about my ice cubes. You like cigarettes and coffee, I like ice cubes.”
“I’m addicted to cigarettes and coffee,” I said.
“I like ice cubes,” she said forcefully with a crunch. I got the point.
BG held court in the nearly empty cafeteria while others wandered through and gave brief reports of the evening’s happenings at the camp. The families were staying in cabins. Some hardy souls were braving the wild and camping out. BG and I hit it off pretty quickly. I finally asked her what BG stood for.
“It’s Bitch Goddess, motherfucker, and don’t you forget it.”
I got the point.
Eventually I was shown to a clean, quiet, empty room at the end of a long hallway, across from the men’s room, where I settled in for the night on a comfortable cot. I had to walk past several other rooms to get back to the cafeteria or the exit. I figured they put me there to keep an eye on me. Burp.