BREAK THROUGH FAST
The next morning I awoke at dawn and showered in the men’s room. Things were still quiet; I guess BG was still asleep. It seemed I was the first to use the shower-stall since the shower floor was bone dry. I wondered whether I had made an impact the day before—that is, attracted any attention to the project, other than mild curiosity from the women.
Besides Paul Vess and Dale Brisson, I hadn’t met any men with hemophilia that day. SP8 had been in a protective bubble of people. Paul and Dale hadn’t been infected with HIV. They both wore their hemophilia like a badge of courage—and it wasn’t contagious. On the other hand, there was still that stigma with AIDS, and a history in the hemophilia community of discrimination and retribution, so some of those infected were reluctant to make themselves visible and vulnerable to the outside world. Ryan White had been a well known hemophiliac with AIDS who had been thrown out of school in Indiana. The Ray family in Sarasota, Florida was burned out of their home. And North Carolina wasn’t known for its liberal thinking. I knew that I had to be an open book if I expected anyone to be open in return.
I heard movement in the kitchen but I didn’t want to walk in on anyone unless they saw me coming. I moved between the bathroom and my room quietly not to disturb those asleep, but frequently enough to be seen. After a few trips for shower, bodily functions and teeth, I was finally spotted from the other end of the hallway by the frizzy blonde haired woman who had taken my check the day before. She smiled, and I took the opportunity to move out onto the playing field. A portly man with bad joints was hobbling around with glass coffee pots in the kitchen. He had the facial features of a Roman aristocrat, but he walked like a penguin, moving quickly, not letting his limp get in his way as he attended to the morning brew. I offered to help.
“This is for decaf,” he said with a Carolina twang and perfect pronunciation, “the real stuff is percolating in the hall.”
I had learned from Brent not to be an insidious enabler, not to do everything for him that required physical effort, not to take away his birthright as a man (to be the woman’s slave, he told me).
The blonde was setting the table with fruit juice and donuts in the cafeteria and greeting early arrivals. “Can I help?” I asked.
She assured me that everything was under control, pointing to the coffee as she shadowboxed her way through the morning agenda. I walked outside into the fresh morning air and found a flat spot on the side of the hill where I could do my dance, the tai-chi dance, up where the llama was. That was my path of least resistance. Tao.
When I finally made my way back to the cafeteria others had begun to gather for breakfast. I packed the car and returned for some coffee. Vickie and Kathy Register were speaking with a man in his late twenties. I joined them and wished them good morning.
“He’s dangerous,” he was saying. “Just because he has a nursing degree he thinks he knows what he’s talking about.”
“Good morning,” I answered.
“This movie you’re doing,” he said, “I read the proposals and it’s Brent’s story and he’s dangerous. The way he writes about HIV not causing AIDS. What if people stay away from treatment because of what he writes?”
I soon learned that the young man was severe factor VIII deficient and HIV positive.
“Up until recently I thought that Brent was the only hemophiliac in North Carolina willing to talk,” I said, “The film is about hemophilia, a discovery thing using Brent as the thread. Did his writing cause you to stay away from treatment?”
“No, I’m a medical student at Duke and I know better,” he said in an arrogant tone of voice.
“And no one else who can read will be able to make up their own mind. Is that what they teach you at Duke–To shut out all other opinions?” I was getting annoyed. “The fact is his beliefs may be keeping him healthy. And he certainly is funnier than you are.”
“I’m glad he’s healthy, but he should keep his opinions to himself.”
“I thought he was. I didn’t think anybody actually read those newsletters.”
The Duke finally cracked a half smile, “Good luck with your movie.”
What movie, I thought though the confrontation had been invigorating.
Kathy Register cut in, “Welcome to the hemophilia community. The Duke and everyone else have very strong opinions.”
“I don’t mind a good argument,” I said throwing out the tao with the dishwater.
The Roman aristocratic penguin joined us at the table. “I’m HIV-positive and I haven’t had to use anything yet either. It’s up to the individual. I don’t trust doctors very much anymore.”
The Roman was in his early fifties and had been through it all: whole blood, plasma, Cryoprecipitate, factor concentrates and HIV.
“We trusted them,” he said.
“Everybody makes mistakes,” the Duke added.
I soon excused myself. I had a lot of money to find. BG was speaking to Earl, a man in his mid-forties who had the limp and looked sick. They were discussing all of the drugs he was on for his AIDS. BG introduced me to him and said that he worked for another home-care company, the biggest involved in hemophilia. Then they went back to discussing the drugs. The Earl, the Duke and the Roman were all HIV-positive. The Roman looked the healthiest and he wasn’t taking anything for the virus. He was also the oldest. What was I getting into? Brent had been a good introduction to the humor and ego and intelligence I was running into. The hemophilia community certainly shared more than a bleeding problem. But they certainly didn’t think alike. I was looking forward to my drive through the mountains North and my appointment with the Prince, but I had made some headway into the community. I had gathered phone numbers and new information and set up a date with BG and Craig Epsom Nelms if he was available for later in the week. I couldn’t let the grass grow under my feet. The blonde had me stack tables and chairs as the retreat was coming to a close after breakfast and I finally felt useful. Ching.