tai-chi-one.com

One of the companies I had been hounding all winter was the manufacturer of a factor concentrate derived from the plasma of pigs. Since they had not been involved in the HIV debacle I was told that they might be interested in backing the project with a substantial amount of money. Finally in the spring, after a winter’s phone calls and numerous letters and proposals I got what sounded like a GO, though the offer had finally settled down to five thousand dollars. One of the stipulations was that I interview a doctor of their choosing and throw in a few of their questions.

I suffered greatly about the ethics of such a proposal, with some sense of selling out. The factor which they produced was used in emergency situations for inhibitor patients, those who have developed antibodies for other factor concentrates. We had devoted our entire focus to the short film, realizing that several hundred thousand dollars was not going to drop out of the sky for the feature length documentary unless we first produced the short. Craig’s death gave light to Kathy and Charley Register to be in the film, and since Charley had been ravished by an inhibitor we had worked inhibitors into the short script. We had intended to use a white coat anyway, so I told the man we would work his doctor in and it would be a perfectly natural process since Charley Register would be speaking about his inhibitor.

They gave me a schedule and a place. They wanted me to go to Houston and interview their doctor. For five thousand dollars, I was on the road. It was a start. Chanter didn’t want to make the trip so I lined up a crew and equipment in Houston which would cost two thousand dollars for the half day and called the man and said, “I’m ready.”

And then he told me to do it first so they could see if they liked it and then they would pay for it. I explained that it wasn’t a commercial; he was backing an independent documentary. “That’s right,” he said. I was a little confounded; I had gotten the company’s card in Philly at the National meeting and he never paid for so much as a phone call. He agreed to send the money and I waited, finally saying “Where is it?”

“We think you may be running a scam,” he said.

I ate enough pork at the “pig pickin’” to give me the gout for a year, but nothing happened. I did get to spend more time with SP8 and Lydia and ask the Boss for more money.

“I’ll see what I can do,” he said.

I didn’t hang out for very long, just long enough to continue to get everybody used to seeing my strange face. It was their party. On Sunday I looked over the garden and found small sprouts of spinach and lettuce already edible. The sunflowers had grown several inches also. Once again I was in a money bind, so first thing Monday morning I called the King, Dr. Brinkhaus and spoke to Minerva the secretary. Stephen was on vacation but Minerva had gotten used to my voice and me from being such a pest. I told her the phone company had turned us down and the project was dead unless we came up with something quickly. Once again the cutoff notices were looming. The phone bill I could jostle with for awhile, since we had just sent them a substantial sum with the Preacher’s help, but the City of Wilmington threatened to cut off the water. As much as I was watering the garden I could see why. Until the growing season it had only been showers, toity and tea for one person. Now they were getting irate because I needed water to grow food to eat.

Anyway, Minerva gave me a name and a number. I called Clark Gable and his partner Van Johnson, part of a group of people who ran a company that collected plasma from people with bleeding disorders and sold it internationally for research purposes, HRF Inc. The owners of the company were people with bleeding disorders. I faxed them copies of all of the letters of support and updated proposals and anything else I could find. Then I waited.

Lucretia called the week after the fishing trip and said that there was to be a “fly-in” to Greensboro the following week by the Radical and a couple of lawyers concerning the settlement offer from the pharmaceutical companies. She had been called on to spread the word and organize the whole thing. I felt honored that she called me. I knew I had to be there.

I had been calling the Englishman, Joe, from the media arts conference, all winter. He finally gave me an appointment to stop by and see him. He was surprised to see that I was still hanging in there. I went by his office and came out with the history of the project and asked for help. He threw in another letter of support and gave me a name to call in London at Channel 4.

I called back Clark Gable and Van Johnson and set up an appointment for the following Monday. On Saturday, Chanter came by with her usual ditty bag of goodies, a care package of sorts. I told her about the Monday meeting with the plasma company.

“You gotta go to this thing,” I said.

“I guess I could take the day off,” she said, “If you think it will make a difference.”

“This is the first referral I’ve gotten out of that office where somebody’s actually going to talk to me.” I said. “They’ve got to see that somebody is in this with me.”

She agreed to go and she agreed to drive. I had just enough money to pay the water bill on Wednesday, the day of the cutoff notice, which was the night that the fly-in was to take place. Chanter was a saint, but she was always late. Up until that time there had been no pressing appointments that we had to keep, so it had been no big deal since she always eventually called or showed up. I was getting used to it in a way, since she had been so helpful in drafting letters and other no-budget preproduction duties. Just in case, I asked her to show up a half an hour earlier than necessary for the ride to Raleigh.

Chanter worked at a temp job on Monday morning and showed up late, of course, but I still figured that we had plenty of time to get where we were going and still be on time. Mine was a time thing. She didn’t know no time thing, and she drove like she didn’t know no time thing. We ended up getting lost anyway which was actually my fault but we were a half hour late for the appointment. But because of the late thing with the King, Dr. Brinkhaus at the dinner, and now this, suddenly my thing was a late thing. This showed me that if you hang onto a thing too tightly nobody is going to see it as your thing anyway because whatever others perceive your thing to be is what your thing will be. That’s when I stopped worrying about what others thought and just tried to do my own thing; in an age where it’s all done with mirrors it’s time to break the glass and just get real. It does make it difficult to get money though.

Clark Gable and Van Johnson were waiting patiently when we arrived. I fielded every question about hemophilia and the community that they threw at me. I also learned a little bit more about other clotting factors and the coagulation cascade. Van Johnson had a rare blood disorder. He was factor XII deficient. Clark Gable was a severe factor VIII, HIV negative with the limp and good teeth.

“One of the problems I’ve had is the perception of others that I must have AIDS because I have hemophilia,” Clark said.

“We have three HIV negatives participating in the film,” I said. He had seen a copy of the script. He knew we covered the fact that hemophilia doesn’t necessarily mean AIDS.

“If we back you on this, how will it be distributed?” he asked.

“I know we can get a screening at the National Meeting in San Diego in October,” I said. Well, I was hoping we could, anyway. Clark showed me a book that had been written by Laureen Kelley and I told him we had danced together in Philadelphia and I was still dancing. Chanter had to hold me down when I began spouting forth information, much of which I didn’t even know I knew.

Van sat back quietly and watched and smiled. Clark gave us a tour of the facility, explaining that the FDA required them to use the old method of withdrawing blood, manual separation and re-infusion, because the blood came from people with blood disorders, some of whom were HIV positive. The meeting finally ended and I was wired for the rest of the day. They said they had to talk it over with their other partners. And that was in April. After a stop in a shopping mall so I could get a cup of coffee to bring me back down to a level where I could sit still, Chanter drove us back to Wilmington. There was still no definite money on the horizon.

By Wednesday the fly-in had turned into a conference call, but I wanted to go anyway, even though the lawyers, the people I wanted to hound for some money, wouldn’t be there. I decided early in the day to let the water bill go and they cut me off at noon. I rented a car and drove to Greensboro for the evening meeting and was happy to see SP8 come strolling in with his mother and climb into a seat right next to me. The Roman and Lucretia and BG were the main moderators, but Vickie Strange from the camp was there, and since she worked for yet another home-care company, Caremark, I gave her an updated proposal. The Duke had gotten his M.D. and carried the meeting a bit further by giving an update on the new protease inhibitors which were showing some success in controlling the AIDS virus. The Radical called in at the appointed time and fielded questions about the settlement offer, saying that it was up to each individual to decide on whether to sign on. “File a lawsuit now if you still meet the statute of limitations” was the main advice.

I bummed cigarettes off of SP8 all night because I had “quit.” He was quite surprised when I asked him for a drag off his, him having AIDS and all. I knew that there was no threat there. The main thing I accomplished was spending time with the kid. His father had committed suicide when SP8 was a young child. His mother had remarried, but he was still a kid that was really pissed off. Lydia was at the meeting and he got to spend a little more time with her.

As the meeting came to a close I told BG about the water being cut off. She told me that I should call Agnes Ofgod who owned a homecare company in Tennessee, and that she may be a possible funding source. Vickie said she would check with her company again, a very big company, and see if there were any possibilities.

I made it back to Wilmington on a wing and a prayer and had just enough money to fill the tank and pay for the car. I called Agnes Ofgod the next day and she said she would help out. Chanter hauled over jugs of water so I could flush the toilet and have tea, and then finally I got a letter from the City of Wilmington with the name of a person to call to talk to about the water bill. I called and the woman had left for the day. The woman who answered the phone said, “Do you know where the cutoff valve is?”

“I think so,” I said.

“If I were you, I would turn it back on,” she said.

“Huh?” I said.

“Well?” she said.

In the morning I parked the truck in my old parking space across from the barbershop and rode my bike to the motel down near the docks, where I knew that parking would be a problem even though it was off season. It was a warm April day though a little bit windy. The plan was for a half day’s fishing, since on previous trips the full day proved to be a bit much for some of the kids and a few of the further along positive people.

In the parking lot of the motel, beverages and supplies and some of the more encumbered guests were being loaded into Wayne’s van and other vehicles for the block and a half trip to the dock. Brent showed up. I hadn’t seen him in months and he was somewhat surprised to see me still plugging away at making a film about hemophilia.

“What are you, nuts?” he asked.

“Must be,” I told him.

I asked him how Fish was doing at the barbershop and he told me that Fish had moved inland with Chips. He also told me that he and Brenda had moved off the island.

“Gastro is running the barbershop,” he said. “I was beginning to get that island mentality. I was learning how to cut hair, and I’m too short.”

“Gastro is running the barbershop?” I asked a little bit dumbfounded.

“He’s taller than I am. Fish talked him into it.” Brent told me.

“Gastro doesn’t give a good duck’s ass, does he?” I asked.

“Right,” he said, “That’s why he took over the barbershop. He got two more girls to do nails and he sells a lot of beer. They got a license. Fish was friends with the mayor.”

The boat was soon loaded, and we were off into the harbor, through the channel, out the waterway, across the inlet and punching waves with a good head wind in the ocean. Lucretia’s daughter hung out with SP8 on the bow where they braved the spray in the warm morning air. SP8 had shed his wheel chair to crawl-step on his own two feet out to the bow, sucking every ounce of life he could swallow on the bounding vessel. I kept my distance since his Mom and Wayne Ward were allowing him this freedom, but I still kept an eye on him. Most of the adults eventually settled at tables and benches in the large cabin. SP8 just hung tight up front, surfing waves on his fragile legs, doing what he would have liked to have done on a smaller board if the bug hadn’t got him. He was of a generation that could have escaped joint damage because of the advanced clotting factor and procedures. He was infused by his mother with the bug when he was nine. Quite a few people knew that she was doing it, but they didn’t tell her. It had been considered an acceptable risk by the National Hemophilia Foundation and the government and the pharmaceutical industry and many doctors.

I slowly tried to establish contact with him just by hanging out on the bow in the wet stuff. It was fun actually—much more fun than having to sit around with a bunch of people trying to act like adults. Lucretia’s daughter asked me why Chanter didn’t come as the boat splashed from one wave to the next.

“She’s a strict vegetarian and she chants,” I told her.

“She told me she chanted,” Lydia said, “but what does that have to do with fishing?”

“She doesn’t like it when their eyes bulge out when you yank the hook out of their mouth,” I said.

“I like that part,” Lydia said with a smile on her face. She looked like her vampire like but beautiful mother.

SP8 actually laughed. And then he cut it short and pretended it had been a sneeze. But it really was a laugh.

I caught SP8’s eye. “Nice chick,” I said. And he smiled again. I thought of a book by Gabriel Garcia Marquez, “Love in the Time of Cholera,” and decided to go back to the cabin for a coffee with Parnelly, the Boss and Brent.

Brent was having his morning beer, telling bleeder jokes that no one without hemophilia would dare tell and most people wouldn’t get anyway. It scared me because I got them, but I didn’t laugh. Neither did the Boss, but Parnelly did.

“I think I better go back outside with the kids,” I said.

Everyone else was in little groups, mainly discussing the $600,000,000 settlement offer since many on board were infected with HIV, thereby included in the offer. What it came down to in the hemophilia community was that even the ones who had escaped the bug had gotten hit with the impact and implications. It was a community thing and once again, because of the generosity of the Boss, a small segment of the community was able to get together and talk about it with one another in a very enjoyable setting.

The wind finally died down and we anchored out of sight of land. Fishing rods and reels were passed out and everyone spread out around the boat, grabbing a patch of rail and a bucket of squid. SP8 locked the wheels of his chair in the stern; I checked in on him once in awhile and got to bait his hook a few times. I was finally making contact. I found a spot next to Dale and his two sons on the port side and eventually caught a fish the size of a hot dog. Lucretia, her husband and Lydia were above me toward the bow and seemed to be having much better luck. Lydia seemed to be deriving great pleasure out of pulling the hooks from the fishes and Lucretia caught the biggest fish of the day.

The crew moved the boat a few times in search of better fishing, but the changes didn’t make much difference, and it was soon time to head back to shore. Everyone reeled in their lines and went for sandwiches and beer and sodas in the cabin as the crew secured the gear and headed in. Wayne sat at a table smoking cigarettes and drinking beer with SP8 in the cabin. He told me to sit as I passed. Wayne slid over and I sat across from SP8.

“This is who you should talk to about your movie,” Wayne said.

“Okay, kid, are you going to finance this thing?” I asked.

His sharp eyes darted to the side and he got a half smile on his face as he took a drag from a cigarette and then a sip from his can of beer. He pulled his head back and looked at me through half closed lids and raised eye brows.

“How much do you need?” he asked in a voice somewhere between puberty and adulthood, half man and half child, with lips that never fully opened at the corners.

“About thirty grand,” I said.

He took another drag from his cigarette, inhaling deeply, coughing.

“That shit’ll kill you,” I said.

And he smiled as he took another drag on the cigarette. I pulled out a cigarette and asked for a light from his. He slapped a Zippo on the table.

“Use this,” he said, “when you light one from another that’s monkey fuckin’,” he said, forcing the words through his good teeth.

“I just want a light, motherfucker. I don’t wanta dance,” I said with a smile.

His eyes got real big and he grinned as he looked at Wayne.

“He just called me motherfucker.” he said with the words finally coming out fully.

“It’s a term of endearment,” I told him.

“I told you he was okay,” Wayne said, smiling.

By the time we got back to the dock we were homeboys. I knew that I could sit with him and he would talk to me. He was no longer a shadow to me and I was no longer an unknown monster that he had to keep hidden from. Wayne gave me a small video camera so I could “practice making my movie.” But I knew nobody got it. Nobody saw the bigger story I thought I saw, a story that was becoming more and more shrouded even to me in the constant battle for funding.

I was invited back to a “pig pickin’” later in the day, so I thought I would go home and change first. I rode my bicycle over to the truck parked across from the barbershop. I couldn’t just leave; I had to go in.

Gastro was actually cutting hair. There was only one barber chair and in it was a kid with orange spikes coming out of the top of his skull. Gastro was running the clippers back across the temples leaving a fine shaving of bristles on the kid’s skull. He had a cigar between his teeth.

“Gastro!” I said. I’m pretty sure I left my mouth open.

“Hey, I thought you were dead,” he said without removing the cigar or losing his grin.

“Fine, thank you,” I said. “I didn’t know you could cut hair.”

He paused and took the cigar out of his mouth but he didn’t lose his smile. “I just do buzz cuts and trim work,” he said, “the fancy stuff was already there.”

“Fish?” I asked.

“Retired,” he said putting the cigar back in his mouth and once more working the clippers.

“How about all the old specialty customers?” I asked.

He took the cigar out of his mouth and looked a bit despondent. He actually lost his smile for a second. “I tried,” he said and he got his smile back, “and you know what, I just don’t give a good duck’s ass. Heh, heh, heh. Look out on the patio.”

I worked the garden like a peasant while waiting for the money from the Preacher. I found seeds on sale for ten cents a pack and put in an early crop of spinach, lettuce and sunflowers. Rooster had created a raised bed system of naturally fertilized manageable plots that suited me just fine. It was all very linear in a rectangular sort of way with full sun for most of the day. I posted a bronze pagan symbol of the earth mother overlooking my little Eden, which I thought would also serve as a scarecrow. It looked like a disembodied glowing head if the light hit it just right. With the number of people that had died on the property, including Saint’s parents, I felt a floating spirit was appropriate. I was, however, really falling behind on the rent.

Saint made a trip South to check on her homestead and we worked together for three days in the yard. She could have booted me out right there. I showed her all of the information we had gathered on the project and told her about the phone company foundation and said that it looked hopeful. I was so convincing I almost believed it myself. I knew that the money from the Preacher had to go to the phone company so I couldn’t make any promises there.

“I’m a Christian and I’m a Saint, and don’t you forget it,” she said.

She didn’t try to convert me and she let me stay. After she left, I made a special trip to see the King, Dr. Brinkhaus and beg him for money for the project. He said that if the phone company went for it, so would he. I asked him for ten thousand dollars. I even showed him all the letters and degrees on Chanter’s resume.

“There isn’t a lot that I can do,” he said.

That was a big part of the problem, we needed something substantial so we could get started. We were ready to produce, but all we could get were sustaining funds which ended up costing as much to procure as was eventually procured. Even the Preacher’s thousand cost a winter’s worth of long distance phone calls and a trip North.

“Get a job,” BG said.

“This is my job,” I told her. “It’s a full time commitment or it’s over—I just don’t get paid” That’s how it was, like holding a mess of helium filled balloons by the ends of their strings. It took both hands and it wasn’t time to let go. If the Preacher hadn’t sent money or the Saint had said get out it would have been officially dead, even before the answer from the phone company. There would be no phone and no base of operations.

Chanter loathed my smoky little dark office which had only one window. I moved the laptop out to the table in the kitchen where windows lined two walls and the air was circulated with a ceiling fan I had installed. I used a long phone cord to stay plugged into the information and Chanter brought seeds for the birds and food for me, stuff I hadn’t seen in a while like fresh baked bread and eggs and bananas. I had learned to do a lot with flour and corn meal and rice without becoming overly domestic.

The phone company said “No.” But the phones were still plugged in so we kept sending out proposals and letters and phone calls. We learned of the Boss’s annual fishing trip at the Beach not very far from Wilmington. He rented a motel and hired a party boat to take his Southern customers and staff for a ride. It gave him the opportunity to meet and stay in touch with the community he served. I was invited on the trip. A pawn shop gave me a hundred and twenty-five dollars for the combination TV/VCR—one of my rewards from the water business which came in handy editing the taii-chi video. The plasma bank became my only access to TV twice a week for the roughly two hours that it took for the process each time to earn fifteen dollars. My health was great.

The night before the fishing trip, Chanter took us over to the Beach in her car so she could meet, for the first time, some members of the community. I also wanted the Boss to meet my colleague, figuring it might loosen his purse strings a little bit more. He spent big bucks on entertainment, but I just couldn’t convince him to go a little bit further for the film, even though several of his customers would be in it. I guess he only saw a few of the balloons that were aloft and couldn’t justify paying for those he couldn’t see.

Anyway, Chanter never got to meet the Boss because she had to leave before he got there. She did meet Dale and Paul and other members of the hemophilia community with great minds and good teeth and limps. BG was absent because her father had died recently. Lucretia, the despondent one from the Ricky Ray Rally, was there with her husband and daughter. And the news had just broken that the four pharmaceutical companies put an offer of $600,000,000 on the table to compensate HIV positive hemophiliacs in settlement of numerous active lawsuits. The general feeling was that it was an insult, but it was a start. No one, at that point, was certain as to the exact number of people in the community eligible for the payoff. Wayne went off to pick the Boss up at the airport when it was time for us to leave.

Chanter was pretty secretive about most of her life but that didn’t bother me since she was able and willing to do some of the necessary legwork for the film. She could have been a high-priced call girl for all I knew. I was still stuck with the fund-raising. Just the fact that she was able to carry on a conversation in a comfortable manner had to help my job a little. I planned on asking the Boss for more money and I was hoping someone would tell him that I was working with a capable individual.

I spent my time preparing the garden, Rooster’s garden, for an early Spring planting and working on the computer re-writing old screen plays, tooling funding letters and keeping tabs on the hemophilia and AIDS communities on the Internet.

The e-mail began to heat up with news of the Ricky Ray Relief Rally on the Capital steps in Washington, DC to be held near the end of March. I found it my duty and obligation to attend to show support for the hemophilia community even though the money thing was becoming tragic again. BG and Dale Brisson and a group from North Carolina were planning to attend. The plan was to gather the masses for chanting and speeches and then a general assault on members of Congress to gather support for the bill which would compensate HIV affected individuals or their heirs with $125,000. Once again I was dodging bullets from the phone company and anyone who had “bill collector” on their name tag. Decisions on the phone company grants were due out by the first of April and no other money had surfaced. Full Sale Center for the Recording Arts was also calling me for money—the nerve—the hustle—the jungle—The Big Lie.

Susan Resnik who had written the Social History of Hemophilia “THE EMERGENCE AND EMPOWERMENT OF A COMMUNITY” for her Doctoral Dissertation at Columbia University School of Health had spoken of the Preacher as one of her interviewees, or informers as she liked to call them for academic reasons that I didn’t fully understand. I had met him briefly at the National Meeting in Philadelphia and had been calling him and sending proposals all winter. The Preacher, another one of those professional hemophiliacs, owned his own home-care company. He never returned a phone call or acknowledged the receipt of any proposals or letters, but we kept plugging away. Another good thing about having Chanter there was that I could finally use the term “we” again without seeming to express a multiple personality disorder. I had heard that the Preacher was an activist in the community and I was hoping to see him there along with Dana Kuhn who was one of the chief organizers of the event and, of course, the Prince who was the lobbyist for the community.

The night before the event Chanter gave me a lift to Triangle Rental where I rented a car and early the next morning, around 2:00 a.m., I headed North for DC in a fine silver Intrepid. I clicked the thing on cruise control on 40 West and got a ticket for speeding before I got to 95 North. I was due. The police officer was a pleasant fellow—like most people, he wasn’t all that sure what hemophilia was. The main thing he wanted to find out was whether I was coming from a night on the town or not, and I was in such an excited mode all I could talk about was blood.

I eased back a few notches after the stop and just enjoyed the ride, still hoping to hit the Capital before rush hour. I ended up sleeping awhile at a rest stop and couldn’t avoid the traffic on the way into town. I found a parking garage about six blocks away from the Capitol and walked to the spot where great masses have often gathered to protest or make a statement. I saw nothing but small groups of tourists and a lone sound man setting up a small public address system. The Rally was scheduled for 10:00 a.m. That’s when they got there, a few busloads of high school kids from Fairfax, Virginia and a large handful of the hemophilia community, carrying banners and signs and watching their breath on a chilly March morning. Spring had arrived.

BG, Linda Robertson, and Wayne Ward from HRA were there with Dale Brisson and SP8, the kid in the wheel chair from the camp, and his mother. They introduced me to others from North Carolina, including a woman dressed in black lace who had that vampirish look about her. Lucretia was married to a severe factor VIII, HIV-positive man. He was still living, but she was in mourning anyway. BG also introduced me to the mother of the boy from Florida for whom the Relief Act was named. What they lacked in numbers they made up for in spirit. I couldn’t help but compare their futility with my own, but I had made a choice to pursue the project. They didn’t know what hit them until it was there, and it was preventable—but not by them. Theirs was a very tiny voice and no one was listening except for the more than two hundred members of Congress who had signed on to the Bill at that point, but they still had to go through the political process of hearings and what have you. Japan had recently settled with their HIV positive hemophiliac population for close to $430,000 a victim, plus a life time stipend, adding salt to the wounds of the American hemophiliac. Yep, the good old USA was responsible for sending the tainted blood products over to Japan, and the government of Japan was participating in the payments because they were taking responsibility. The same four companies that had the problems here also had problems in Japan. In fact, over 20 other countries had agreed to make payments to their HIV positive hemophiliac populations. And there was SP8 doing his imitation of a turtle on the steps of the Capital, looking like a little old man in his wheel chair, while diligent and upright Wayne the drug dealer stood right there with him on a cold morning in March. I had certainly found out how the unsinkable BG had gotten her name, Bitch Goddess, and I wouldn’t forget it. She was right there.

After the chanting, one by one people took over the microphone and stated their case, “We want Justice.” One of the speakers mentioned that Larkey Deneff from Oregon had died. I had spoken with him several times, including during the Portland floods. He was the second person I had known personally from the community to die.

When the Preacher got up, he spoke of the fascinating 50-year history of hemophilia and how somebody should tell the story. I stalked him and pounced on him when he came away from the podium.

“Preacher,” I said, “I’ve been sending you stuff and calling you since October: we’re trying to tell the story, and you know it. We need money.”

He agreed to send a thousand dollars through the non-profit hemophilia group ear-marked for the project. That would about cover the past due phone bill, but it would keep us in contention. It was only a Band-Aid, but it bought a little more time. I said a few words to Dana Kuhn, who remembered me from the October meeting. I had gotten an entirely new perspective on milds since hearing Dana Kuhn’s story about how he had lost his wife to AIDS after being infused one time, becoming infected and infecting her. It showed how sensitive the blood supply was. I was after him and his group COTT for funding also. I had a strong belief that if a film was out there that told the hemophilia story for the public it could only get them empathy for their cause on a soulful, humanistic level. There were several video cameras recording the rally, but most were run by students working for a sympathetic media arts guy. For the most part, the event went unnoticed by anyone who didn’t have previous knowledge of the community.

In March I attended a cinematographers lighting seminar at the local film studio, CAROLCO. There were over thirty people in attendance so I was hunting. I had two copies of the blood proposal with me. The moderator was a local professional and he held court for the group of mostly young people gathered in the cavernous sound stage where a small house had been built for a previous production. The seminar commenced as a social gathering with fruit juice and other soft beverages offered as part of the thirty-five dollar deal. With the phone company proposal in the works I thought I might be able to attract that one person that I knew must be there somewhere in the world that I could work with and who would have the patience to work with me. I was waiting for a miracle. I sat in the back row of chairs where an attractive burgundy-haired woman sat next to an old cowboy. She sat erect with great posture, and he slouched in his chair sorta comfortable like.

“You gotta pretty much put up with everything, nowadays, I guess,” he said.

“It isn’t a system of beliefs,” she said, “it’s a way of being.”

“What’s that you said you do?” he asked stretching out his lizard skin boots.

“Nam myoho renge kyo,” she said. “I chant.”

“And that’s it?” he asked. “You don’t dance with no chickens do you?”

“We hold all life as valuable. I’m a vegetarian,” she said.

“And that’s my brother-in-law up there,” the cowboy said as he sat up and pulled his boots back under the metal chair. “I better pay attention to see if he knows anything.”

The moderator welcomed everyone to the seminar. We all stood up and introduced ourselves; the burgundy-haired woman introduced herself as Christine Chanter Leahy. The moderator introduced the gaffer working with him and then he talked about T-stops and F-stops and a little about lenses before turning it over to the gaffer.

“The first thing you have to remember is that night is blue,” said the gaffer.

Christine raised her hand and they gave her the floor. “I thought that night was only blue when it came out of the moon,” she said. “Most night light in the city is warmer with other light sources. Las Vegas in the desert glows warm but the desert at night is cool.”

She spoke with the calm and conviction of someone who knew what she was talking about and it made sense to me. The gaffer shook his head and changed the subject to the house in the middle of the floor where the lighting demonstration was to take place. Throughout the afternoon Chanter continued to ask the sharpest questions where no one else had very much to offer. I spoke with her briefly during the break and learned that she was a practicing Buddhist and she had produced some independent work but the camera was her specialty.

I spotted the woman who had been recommended to me but was too busy in the fall at the media arts conference, so I gave her my new proposal. I also gave one to Christine Chanter Leahy.

Chanter called me the following week and said that she was very interested in the project. I asked if she was related to Senator Leahy and gave her the low down, how it had been a general lesson in futility, but the hope was high for a grant from the phone company (where I was spending most of the money anyway). I went over and over the grant guidelines and felt that we were there. Though I had gotten help completing the most recent proposal, most of the letters I had been sending out were self-generated. Though a few of the companies had actually said yes, they eventually changed their minds when some fly got in the ointment. It had occurred to me that it may have appeared as though only one person was involved in the production. I listed the experts for the information involved and even mentioned the friend in Baltimore who had agreed to be the cameraman, but it was always only my name at the bottom. When this is presented to bureaucrats who have to answer to everyone and they haven’t seen the name in People Magazine they naturally exercise their power and throw the thing away. I had gotten that response many times on follow-up calls. “Can you send me another, I must have thrown it away.”

Chanter came to the house with her resume and a video copy of the film she produced and shot—a documentary short about a Celtic Harpist. It was in focus and sounded good so that was okay by me. She had a substantial number of letters and degrees on her resume, which would please the King, Dr. Brinkhaus. And she had a certain attractive quality about her. That made me happy. I was dealing with mostly men in this thing and if we got to production that would make them happy too, to have a babe on the set. She drove a hard bargain though. She said the only way that she would become involved was if she could do camera, be the director of photography.

I called my friend the cameraman in Baltimore who I hadn’t spoken to in months and told him that there was no money yet, but I had found some help and she seemed capable and that she wanted to do camera.

“You mean, I’m fired,” he said.

“Am I firing you?” I asked.

“You got somebody else, right?” he said.

“I guess so,” I said.

“That means I’m fired,” he said.

“Okay, you’re fired,” I said.

“You hard nosed producers are all alike,” he said. “I’ll see you in court.”

I was hoping that he was joking, but I couldn’t be sure after Muffy who wanted me to pay her for not showing up for work, anywhere. Maybe there was some unwritten law in the film business that if you didn’t have anything, everybody wanted what you didn’t have if you ever got it, and they didn’t want to do anything for it but sue.

Anyway, I had a colleague. I even liked her name, Christine Chanter Leahy. But I was still paranoid. The last thing I wanted was to get nailed in some politically incorrect situation that would cause undue anticipation so I asked her, “Do you mind being called, babe, occasionally?”

“Do you?” she answered.

“Actually, No. I find it quite endearing as a general term. It’s better than sir,” I said, “And much better than asshole, one of my pseudonyms—if said under the breath, of course.”

“Okay, Babe, let’s make a movie,” she said.

I was in hog heaven, and not just because I was in North Carolina. Chanter was my age, almost, and had a young boyfriend, and she was new blood, which I needed because I had been selling most of mine twice a week to NABI so I could eat and smoke generic cigarettes which were still eighty cents a pack in North Carolina. And she had good teeth.

Immediately we restructured letters to other foundations and re-applied to potential funding sources in the industry, throwing in her resume and another name as Co-Producer and Director of Photography on the bottom. I let all of my experts know that I had someone working with me who brought new blood and energy and a solid film background to the project. She also brought beads and books and bananas. The bananas were really welcome since I didn’t have very much food around the house. I was familiar with Buddhism from reading Joseph Campbell so the books and beads were as non-threatening to me as a suck dried fish.

“Just don’t try to convert me,” I told her. “I’m an equal opportunity blasphemer.”

“Nam Myoho Renge Kyo. Nam Myoho Renge Kyo,” she answered in a melodic repetitive song.

“You got a good voice,” I told her. “Ever considered opera?”

She kept coming back with the patience of a saint. Chanter could also spell much better than me, and knew more about the technical aspect of film than I really cared to know at the time. (You hire those people, right?) And she was willing to work for nothing until we got funded because it was a worthwhile project. I didn’t tell any of the experts that she chanted and was working temp jobs as a clerk in the medical community. There was something about the Wilmington film community that was typical of most small elitist communities. Chanter didn’t think that night was always blue—this made her an outcast. She didn’t kiss ass. Fabio was more than a fable, he was a walking fabrication of individuality that ultimately toed the party line—“pretend to be different as long as you conform”–Smooch, smooch.

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.