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I had become enough of a moving target that I figured maybe Cleo had forgotten about me. When I let the dog go she was so pissed off I thought I was dead meat. But we simply ignored each other. I didn’t get any more voice mail from Muffy, but I did get a letter demanding two hundred and thirty dollars for her not showing up for work either for the project or her kitchen job. She said she was going to take me to court. I immediately sat down and responded in writing about the necessity of keeping appointments and showing up for work, also mentioning the fact that she had never returned any of the books I had loaned her nor the tai-chi tape.
I was somewhat relieved that my work had taken me out of the small town. I had needed a change of scene. I knew, however, that if we got funding for the film I would be looking locally for the necessary technical support staff, except for the camera man who was still willing to come down from Baltimore for the filming. If things turned out to get really petty locally, the man up North could muster together a crew and bring them with him. The plan was to be ready to run through the entire alphabet a few times, keeping every option open, being ready to act at a moment’s notice. There had to be extreme flexibility.
BG set up an evening appointment with Warren Jewett, the Judge. I called Stephen Pemberton the day before and suggested that Dr. Brinkhaus might wish to see the Judge again. Another 20 year reunion was in the works. The meeting was for the next day.
Around noon the next day Stephen called to say that the King would love to join us, and he planned on bringing his wife, another doctor and his wife, and Stephen and his wife.
“The King, Dr. Brinkhaus took the liberty of making reservations at the Varsity Club on campus, if that’s okay with you.” he said. “It’s a fine restaurant,” he added.
“Stephen, you’ve got to be kidding. Of course, it’s okay with me.” I said. “I don’t gotta wear a coat and tie, do I?”
“I don’t even own a sports coat,” he said, “but I will wear a tie.”
“Okay,” I said, “you wear the tie and I’ll wear the coat.” This got a rare chuckle out of Stephen.
Craig, BG, the Judge and his wife and me were to meet them at 6:00 p.m. in the lobby of the club. I called BG and said I was on my way, and asked her to call Craig and the Judge and everything would be hunky dory. I scurried around and found three hundred dollars to pay for the thing—hoping three hundred would pay for grub for eleven people at a “fine” restaurant. This tapped everything I had, even the car rental money.
After running around for an hour after money and getting cleaned up, I got to BG’s in two hours, but she had yet to speak to Craig or the Judge. She walked around the apartment brushing her mane, with a cigarette hanging out of the side of her mouth as she talked.
“I’ve left messages and the Judge knew he was on for tonight anyway, he just didn’t know what time,” she said, removing the cigarette just long enough to pop an ice cube in her mouth.
“Was Craig on for tonight?” I asked, planting myself in a comfortable chair in the living room where framed pictures were stacked against a pile of boxes.
“He’d die if he missed this,” she said, swinging her hair to the other side and sliding the cigarette to the other side of her mouth at the same time. “No, I haven’t talked to Craig. His office said he was in Greensboro.”
I lit a cigarette from the one I had been smoking. “Are you moving?” I asked.
“I’m manic. I’m re-arranging the apartment.”
She finished brushing her hair and got on the phone. She left a surprisingly calm message for Craig on his answering machine and then another for the Judge. She had this way of speaking in an even tone no matter how much emotion her body language exposed.
“Why don’t you run around the corner to Craig’s and leave a note in case he doesn’t pick up his messages when he gets in,” she told me in the same tone.
I was out of my gourd sitting there so the safest thing for me to do was get moving even if only for a short trip. It was a bit after three, and we figured it would take an hour to find the place and park, plus half an hour to retrieve the Judge. I drove over to Craig’s and posted the note on his door. When I got back to BG’s, she had gotten through to the Judge.
“The Judge won’t be ready until 5:30,” she said.
I called Stephen at the hospital and told him that we wouldn’t be there until 6:30. He excused himself from the phone, returning in a few minutes.
“The King, Dr. Brinkhaus said he had already made plans to be there at six. We will wait for you in the lobby,” he said.
I hung up the phone. “Oh shit, BG.” I said, “They’ll be waiting for us in the lobby.”
She broke out in a big smile. “He’s used to it,” she said.
“I’m not. I hate to be late.” I said.
She took the cigarette out of her mouth, stuck her face in front of the mirror and slammed on her bright red lipstick.
“You must drive your husband crazy,” I said.
“He’s used to it,” she said.
I planted myself in the chair in the living room and lit another cigarette. It was after 4:30 when we left BG’s apartment and tried Craig one last time. His car was there when we pulled up. We parked and went to his door and knocked.
“Oh, there you are.” he said, “I just called you. What’s the emergency?”
“Get ready now,” BG said calmly, “we’re having dinner with the Judge and Dr. Brinkhaus.”
“Now?” he said, “I can’t go to dinner, I’m a mess.”
“Craig, get your shit together right now. You are having dinner with the King, Dr. Brinkhaus.” BG spoke calmly with her eyes riveted to Craig’s as though she would surely kill him.
“I don’t feel well,” he said, “I had a rough day.” He looked at me in my sports coat. “I don’t have anything to wear.”
“Craig,” she said. “Wear a dress if you have to, but get ready.”
“Oh, all right,” he said. He disappeared into his room.
I was hoping he wouldn’t come out in a dress but I thought I’d live with it anyway. He appeared in a few minutes without tie or coat or dress but ready for dinner. We made our way through traffic across the town of Carey and arrived at the Judge’s by 5:30. We parked in front of his house and BG sent me in to get him, even though I had never met the man. BG climbed into the back seat to give Craig the lowdown on the day. The Judge answered the door and invited me in. He told me to wait right there while he finished a phone call. I counted the minutes while he spoke loudly of futures and patent rights, finally hanging up the phone, limping over and showing good teeth in a smile.
“My wife had to work late,” he said, “she won’t be joining us.”
I counted quickly. That meant I only needed money for grub for ten.
“Oh, I’m sorry to hear that,” I said. “This should be fun,” I lied.
The Judge sat in the front seat with me and spoke of how his childhood was in the 1930s when there was not suitable treatment available for hemophilia. He was an inventor and a businessman, and was HIV positive. On the ride he told me how Chapel Hill had been known as the “Athens of hemostasis” in the 1950s. It was after 6:30 when we arrived at the Varsity Club, so I dropped everyone at the front door and went for a parking space. I parked at the first spot I saw even though it required some kind of sticker, and raced into the lobby where the doctors were suited up and waiting for us. Everyone looked marvelous. It was more of an event than I had imagined. We walked in together and were seated around two round tables with the King, Dr. Brinkhaus deciding the seating arrangements.
“We’ll switch around for dessert,” he said.
I sat with Stephen and his wife and Chief Clotter, Doctor Gilbert White, the other doctor, and his wife. The King, Dr. Brinkhaus and his wife—also in her eighties—sat with the members of the hemophilia community. There was the scene: The King with his Queen, The Judge, The Bitch Goddess and the Fairy Godfather at one round table, and the Vampire, Chief Clotter, the babes and me at the other.
After dinner the King, Dr. Brinkhaus switched seats with Chief Clotter and sat next to me over sorbet and coffee.
“Where did you do your graduate work?” he asked me.
“Doc,” I said, “I graduated from Archbishop Curley High School and they threw me out of Full Sail Center for the Recording Arts film school. The film is a good idea. And as you well know, it isn’t simply the idea, they’re a dime a dozen, it’s what you do with the idea.”
I thought I was dead. Kay had told me that the only people the King, Dr. Brinkhaus valued were MDs, and all I had to offer was my BS. But we had fun.
Stephen passed me the letter of support that the doctor had written and then informed me that the King, Dr. Brinkhaus was picking up the check. I was ecstatic. And I still had cash in my pocket. I also had a parking ticket and a fine. Tada.

We went to another hospital treatment center in Winston-Salem where I waited outside in the car while she disappeared for a few minutes and then came out with another vampirish looking guy with a beard. Up close Richard Atwood had a twinkle in his eye, unlike Stephen the vampire who kept a cold stare—probably from working with the King, if Kay’s stories about him were true. Richard did have a folder under his arm just like Stephen.
We drove to a fast food joint down the street where we had coffee—and ice at a central booth with an ash tray.
“Instead of sucking ice with your cigarettes, why don’t you switch to menthol?” I asked BG.
“Mind your own business,” she said.
Here I was shamelessly prying into the personal lives and background of a hidden, frightened community and she told me to mind my own business.
“Tell Richard what you’re trying to do,” she added.
She had heard the story over and over again. It was almost as though she was waiting for me to slip up. So I repeated the entire history of the project and the contacts we had made and so on. Until I finally said, “I need money.”
Richard opened his little folder and flipped through the unbound stack of papers and read with a slight smile, “Hemophilia literally means, Love of Blood.”
“I didn’t know that,” I said.
BG got a smile on her face and said, “Read something else, Richard.”
He flipped to another page and read something about the Babylonian Talmud and circumcision and bleeding disorders.
“I do know that,” I said. “Susan Resnik mentioned that in her dissertation.”
BG said, “Richard collects facts about hemophilia.”
It was his delivery that was intriguing. I soon realized that this was an audition. With all of the auditions I had been giving I was finally the recipient of one. Richard became our “Greek Chorus”. He would talk about the history of hemophilia in our film.
“He’s perfect,” I said.
“I thought you would say that,” BG said pleased with herself.
We dropped Richard back at the hospital and he left the stack of papers with me to go through. More stuff to read, but I knew I had to do it. It was my job because I had to write the script since there was no one else that would do it.
We made two other stops in the area. The first was to visit a man who had had his leg amputated. He was severe factor VIII deficient and HIV positive. He lived in a small town and no one knew he was positive, even his kids. Of course, BG had me tell my story first. I mustered all the enthusiastic animation I could gather, paying my entry fee with myself, before finally asking the man if he’d be willing to talk about his condition on camera.
“They’d give them hell in school if anybody knew,” he said.
He was basically a prisoner in his own house. His wife worked full time and he could do nothing. BG questioned him about the meds he had been taking and about the weight he had lost, a part of that being the leg from above the knee down. He was pissed. It was more than being pissed, it was the despair of living on a planet where the apes were in control of who thought what. I didn’t see his teeth. He didn’t smile.
Our next stop was Parnelly’s house. He was also severe factor VIII deficient and HIV positive with no sign of AIDS yet. He had the limp and good teeth and a beautiful wife and a dog that wouldn’t stop barking. I performed first, causing the dog to chatter and bark until I finally moved down onto the floor and let it bite my hand. That made the dog shut up. It didn’t bite hard. The little dog just laughed and laughed and came over and clamped its jaws on my wrist while I tried to carry on a conversation sitting on the floor at Parnelly’s feet talking about blood and guts.
The people I had been meeting, with the exception of Craig who was in his early thirties, were in their forties or fifties. Brent and the Duke were in their late twenties. For this multi-generational project, I also needed someone older, I told BG. Especially since the King, Dr. Brinkhaus had been involved in blood since the 1930s, we needed someone who had seen all the changes the treatments had gone through since that time, as a recipient of those treatments.
BG and I stopped off at a roadside hot dog joint and picked up food for the ride back to her house in Carey, Dutch treat. My money was fast disappearing, and the next payment from the fascist water man would be the last. On the ride home she told me about the Judge.
“I’ve seen him speak,” she said. “He has this very quiet distinguished voice and no one is more knowledgeable about hemophilia that I know of. And he knows the King, Dr. Brinkhaus. He’s in his 60s,” she said.
I saw an opportunity for another meeting with the King. OM.

Fabio suggested gathering letters of support for the project. Well, I had worked at gathering support for TAKE A BITE OF THE APPLE several years earlier, and all I’d gathered had been letters of support and they hadn’t made a bit of difference—the project died after several thousand dollars and three years of work. It was to be a short animated film promoting literacy using a song I had written; people said that they liked the idea and the song, and wrote wonderful letters, but money never followed. What the hell, unless somebody puts it in writing, nobody is going to believe that so and so is behind you anyway,
I went after the King, Dr. Brinkhaus first. I wasn’t sure he would go for it, him being The King and all and me the kid from left field. I figured maybe he thought I was some famous documentary guy which would be as likely for him to know as most people knowing that he was a famous blood guy with a bunch of dogs. Luckily, Stephen the vampire Pemberton was in our corner. I called him frequently and he began working with the King, Dr. Brinkhaus on our letter of support. As pale and skinny as he was, working as an underling in the halls of research, the meals must have been appreciated. He didn’t look as though very many people bought him lunch. I kept expecting him to eat raw meat instead of veggie burgers.
The excursions into the bread-basket of North Carolina with BG continued. Dale and Paul were HIV negative. Craig Epsom-Nelms was so far out of the closet and working at ACE that it was his business for people to know that he had AIDS. He was on so many pills, he told me, that his daily ritual, morning and late afternoon, had become religious experiences of ingestion and libation. I had met three positives at the camp, the Earl, the Duke and the Roman, and had spotted SP8 imitating a turtle, but BG seemed to be holding back, checking me out, before she took me any deeper to see if I was really sincere about treating the hemophilia community objectively and with compassion.

A few days later I was back on the road with BG. I picked her up at her apartment, around the corner from Craig’s, which she shared with her husband. I hadn’t met her husband; he worked full-time at the college. I didn’t even know his name, though I knew his last name probably wasn’t Goddess.
BG certainly fit her name. She was in control. I simply drove where she told me to drive and the doors to the community opened. We drove, stopping for cups of ice and coffee along the way, across the state to a little town called Granite Quarry where we dropped in on Dale Brisson and his family. I had seen Dale at the air show posing with Chuck Yeager, and I couldn’t get the image of Dale the jet pilot out of my mind. He was in his 40s and had two sons and a brand new daughter. Manny was severe factor IX deficient and miraculously had escaped the bug. That’s when he started having kids—after the threat had passed. He had one of those very attractive wives. His daughter was a carrier of the hemophilic gene and his sons were healthy. That’s the way it works in a man with hemophilia, if there are sons they escape the gene, if there are daughters they are automatically carriers. If the mother is a carrier, the odds are 50-50 for both hemophiliac sons and carrier daughters. We took Dale to an ice cream parlor in a nearby town after making a few U-turns on the main drag.
“I need money,” I said.
“Will that improve your driving?” BG interjected.
Dale admitted to a drug problem in his younger days due to the pain of hemophilia and very liberal prescriptions, but that was all behind him. He was a family man now. Factor IX deficiency, also known as Christmas disease, was the other type of hemophilia besides factor VIII. Other blood disorders and blood clotting factor deficiencies weren’t officially called hemophilia. Dale and I drank coffee and ate sandwiches while BG chomped coolly.
“The community really needs this film,” Dale said.
“You think so?”
“Nobody knows the truth. The public believes that we’re freakish louts,” he said.
“You’re more invisible than that,” I said. “So how do y’all get these great women with your bum legs?” I asked.
“Great minds and good teeth,” he said.
“Oh,” I answered despondently reflecting on my own shattered smile. “But your daughter’s a carrier.”
“Uh-huh,” he answered, “of a great mind, good teeth and hopefully by the time she has kids there will be a cure for the other stuff.”
“You sound like an announcer.” I said.
“That’s right, and I’m a good writer too,” he said. “I have a problem with my tennis game though.”
“Tennis game—that’s a joke, right?” I asked. “They keep telling me about this great sense of humor.”
All the while people were coming and going at the ice cream parlor as I pursued my continuing education.
“You see these wheels,” he said acknowledging his deformed legs, “I can’t run away from a problem.”
“You mean if somebody gives you a hard time you tell a joke?” I asked.
“No, I hit them with my cane and then I laugh at them and say I have hemophilia. They usually run away because they think I have AIDS and I’ll bleed all over them.”
“That’s not funny.” I said.
“It’s not?” he said. “Maybe I’ve been around this stuff for too long. It was all because of sitting on that toilet seat before I wiped it off.”
“Huh?” I answered.
“That’s how I caught hemophilia, from a dirty toilet seat,” he said.
“BG, help,” I pleaded.
“What can I say,” she said, “he loves his mother. He doesn’t want her to feel guilty because of her bad gene.”
I was floored. BG walked away and got some ice to go. We left the ice cream parlor and dropped Dale back at his house. Then we went off to meet Paul Vess at a steak house at the other end of town. We waited for a half hour after the time we were supposed to meet before he finally showed up.
“Like I told you,” BG said, “always late, you better get used to it.”
“As long as I’m on time,” I answered.
Paul dragged his large frame with his crutches to a table. We ordered some steaks, extra rare, and salads and ice. BG was beginning to pay for her own, and I picked up Paul’s check. It was part of the deal, I thought, putting your money where your mouth is. I often thought that if I’d put my money in my mouth instead of spending it on research and development of a film that might never get off the ground and got my teeth fixed it would at least improve my likability because I’d feel better smiling again.
“How do y’all get these great women with your bum legs?” I asked Paul.
“Great minds and good teeth,” he said.
That was it. His wife was several years younger than he was and another specimen of the species to ponder. I wasn’t exactly gumming my steak but I could store a day’s ration of food in the holes and gaps in my smile. It had gotten to the point where a woman would be afraid of cutting her tongue to shreds if she stuck it in my mouth. And I was renting cars and buying lunch and hunting down bleeders with a crazed woman who crunched ice cubes incessantly, instead of getting my teeth fixed. For Art’s sake?
I learned a little bit more about inhibitors in a hemophiliac. The body rejected the factor concentrate that was normally used to stop a bleed, so other methods, some more costly and others more extreme, had to be used to stop the bleed. Hence his joint damage was more extensive than some who used the normal methods of the day. Moe spoke of a great service he was performing for the community. Well, I thought it was great though at that point I understood what he was doing as much as I understood inhibitors. He was the moderator of an on-line information service about hemophilia. Every day on the Internet he searched for relevant hemophilia and AIDS and healthcare news items and channeled them to his on-line subscribers worldwide for free. I had an old 286 computer and that whole deal was inaccessible to me. I knew I needed a new computer, and maybe I could get one—I still had a few thousand bucks or so coming from the fascist water man. But I also needed to get laid—my lousy teeth were gnawing away at my priorities.
After the meeting with Paul, BG and I drove back to Carey where we visited Craig for a time, and then I headed back to Wilmington where I read Joseph Campbell and tried to improve my mind (knowing that I wouldn’t be improving my teeth any time soon). I figured if I worked on my spiritual side enough I may be able to raise my consciousness up above my belt to another one of them there chakras that Campbell spoke about. I thought I was getting there. I believed I was following a path of the heart. That was really the important thing, what I felt was the proper path with the proper motive, stumbling toward an acceptance of fate with open arms.

After I returned the rental car, I got on the horn and called Vickie and the Earl, looking for financial support from the home-care companies that they worked for. They didn’t return my calls. I also kept after BG. She set up a couple of meetings for me with people in the hemophilia community, including Paul Vess and Dale Brisson and a conference for families with young children with hemophilia. It was a lunch thing, a bite here and a bite there.
The conference in Greenville came first. I rented another car—Iris would have killed the hole deal. I rendezvoused with BG in Jacksonville early on Sunday morning. We drove North to pick up a mother, son and daughter, customers of the home-care company she worked for, and took them to the conference.
The son was a mild factor VIII and the mother believed that she was a mutant like BG. There were no other similarities between BG, an axe murderess type, and the young mother of a potential lifetime customer. That was the deal: hemophilia had to be treated for life. What impressed me about picking up the kid way out in East Bejesus, North Carolina was that the kid was a “mild.” The big bucks were in the “severes”, with the spontaneous bleeds—throw in the cost of AIDS drugs if necessary, and you’re getting into heavy duty change. Milds generally use factor only for surgery or if they get bumped around a bit. BG was working for a company that didn’t mind going out of its way, and neither did BG. They were also the sponsor of the event we were to attend.
We arrived at the Holiday Inn in plenty of time for coffee and donuts and then sat in a small conference room and listened to a “clotter” (a doctor that treats hemophiliacs), a shrink and a social worker. The children were entertained in a separate room while the parents and BG and I sat at the table and generally just listened. I learned a bit more about bleeding episodes and the repercussions between siblings, such as, “I want to be spoiled too” and “where’s my needle?” Bleeding for attention didn’t do it for me. The shrink had written some early papers on the psychology of hemophilia and he spoke of the insidious enabling that Brent had told me about. The social worker, a very hot blonde named October, sat up there and looked good. That’s all she had to do.
After it was over I helped October load her sportscar and reminded myself what I like about being a man—women. It was easy to lose touch with that, because hemophilia was generally a male disease. Throw in the AIDS twist and I thought I might be wandering down a road of male bonding and middle-aged angst. I didn’t even like to hang out with the boys anymore. The saving grace of the project was that the mothers and wives and groupies seemed to be of a very high caliber. Even the ones who weren’t knockouts tended to be sensitive and intelligent and incredibly strong willed, though riddled with guilt. Of course, there were exceptions.
After the conference we went to a barbecue at a nearby park. It was a blood disorder day—kids with hemophilia and kids with sickle cell played together on a softball diamond while volunteers cooked and served barbecue chicken. Wayne Ward showed up at the picnic with his great smile and easy movement. He was the most free-thinking redneck I had ever met (and he’d put me on to Craig Epsom-Nelms).
I met at the conference a four year old who was “severe factor VIII deficient.” At the picnic, the kid picked up his shirt and showed me his port, a surgical implant under the skin in the chest that was used for the regular infusions he had to endure, something called prophylaxis, preventive infusion with factor products. The port saves the veins and the prophylactic treatment saves the joints. His parents were in the Marine Corps. They had two other beautiful, healthy kids and you’d have to look hard to find a more loving father. That kid had it all.
I volunteered to drive the woman and two kids that BG picked up in the morning. Her husband had stayed at home. I had heard that husbands often found other things to do than help with the care of the kid with hemophilia; that’s why the marine was so refreshing. We had fun on the way home. The mild sat up front with me and his mother and sister sat in the back, and we sang songs and acted silly. I dropped them off at their door. The old man didn’t know what he was missing. I went home to my cave and remembered how great my folks had been. How lucky I was. Ahh.

CRAIG EPSOM-NELMS & THE BITCH GODDESS
When I returned to North Carolina I arranged to have lunch with BG and Craig Epsom-Nelms. The King, Dr. Brinkhaus was tied up for the day, but Stephen Pemberton his assistant agreed to meet us at the restaurant in Chapel Hill. Fabio was also available. I was intent on connecting things quickly—to fill out the story possibilities while I could still buy lunch. Craig gave me easy directions to his apartment where BG would be meeting us. Craig was the director of AIDS Central Awareness or ACE. He called it AIDS Southern Style, ASS, in honor of the good Senator Jesse Helms.
“The man doesn’t want to admit that he likes young boys.” Craig said in one of our phone conversations. His voice had a smooth nasal quality to it, an octave or so higher than BG’s, with only occasional hint of his Southern training that came out in mimicry, y’all. Craig was the son of a Southern Baptist minister, navy brat retired and active in anything that mattered to him. He was HIV positive and severe factor VIII deficient. In the couple of years before our first contact he had gone through knee replacement surgery, lost his partner to AIDS and achieved his Masters degree. He had written a book about his knee. He was into extreme personal awareness.
Craig had sent me names and addresses of others that he thought may be interested in the project but I was holding off on any cold calling until things like money and story developed a bit more. When I arrived at the apartment BG was already there. Craig’s slightly weak handshake matched his lanky frame and nerdy appearance, but his personality and great teeth made up for it. His apartment was as neat as a pin. BG sat chewing on ice cubes and watched me react to the realm I was entering
“This place is such a mess. I’m a slob,” he said as he dragged his bad leg around the room.
“I’m here for lunch, not inspection,” I said.
“Wally was the neat one. Tell him about Wally, Roscoe,” BG said not wasting any time.
Roscoe pointed to a picture of a black man next to the stereo. “Wally Epsom was my partner, we were married, he was a black man and that’s why I hyphenate my name Epsom-Nelms, and he died of AIDS, so I’m a Homo-Hemo,” he said in one long breath.
“Cool, let’s go eat,” I answered.
“Let me fix my do first,” he said, sticking his face in front of the mirror and moving his hair with one hand while wiping moisture off the back of the sink with the other.
Craig could have passed for straight but he went out of his way to create a stereotype of a homosexual man, either for shock value or simply to let his hair down. I felt comfortable with him either way. He was an open book, restless to the point of obsession, a crazed multi-tasker. BG didn’t hide her shadows either. She was obviously checking me out, wondering about my sexuality and preference.
I maneuvered the Intrepid through the midday traffic to get us to the restaurant on time.
“BG, he drives like a madman,” Craig said, buckled into the front seat, gripping his notebook in his lap.
“Everything’s under control,” I assured them. “I’ve got to be on time.”
“He’s one of those,” BG said. “In the hemophilia community you get used to being late.”
“Not if I can help it,” I said.
“I guess I can be on time for once,” Roscoe said smiling and enjoying the ride.
“You two have fun. I’ll be late anyway,” BG grunted, looking out the side window and chomping on an ice cube.
We made the Chapel Hill exit and weaved through town to the hospital where Stephen, pale in the afternoon sun in dark glasses, made his way to the pickup area with his binder under his arm. He sat with BG in the back.
“Glad you could join us, Stephen.” I said introducing everybody around.
“Dr. Brinkhaus sends his regrets,” he said.
“Fabio from the Film Foundation will be joining us for lunch,” I said, wheeling into traffic on the way to the meeting place across town.
The Intrepid found a space easily in the parking lot. I stopped off for Players at the tobacco shop on the way into the restaurant. We had ordered by the time Fabio showed up and he just had something to drink. It was right there at that table that I attempted to define myself in the bringing together of all the different aspects of the project, Mephistopheles, the Vampire, the Bitch Goddess, the Fairy Godfather and me.
“I need money,” I announced to the Film Foundation, the medical community, the home-care industry and the hemophilia community as I picked up the check for lunch. Stephen confirmed the King, Dr. Brinkhaus’ support in front of witnesses. BG and Craig ate and Fabio told me about a premiere that was happening that night in Chapel Hill: an independent feature about contemporary vampires in a rock group. He said that the Foundation had supported the effort and he would reserve a ticket for me to pay for at the box office. I figured it was time to schmooze with the film community a little, so I agreed.
After lunch Craig, BG and I dropped Stephen off at the hospital and then back-tracked to a Brew Pub across the street from the restaurant and socked down a couple of pints and chips while hashing over the King, Dr. Brinkhaus’ interest in the film. Then I took them back to Carey. Craig let me use his shower to freshen up and change for the premiere. I returned to Chapel Hill to see a really bad movie with lots of fake blood celebrated with pomp and circumstance. I saw Fabio there and sat next to him. I walked out before it was over and gave up on schmoozing. It was time to go back to my cave, a three hour drive away.
Rupert says, “Cruisin’ down the highway
with a pickled egg and coffee,
a half a pack of cigarettes
and a hundred miles to go.
Oh, Yeah.”

THE BLACK PRINCE
On Tuesday I kept my appointment with The Black Prince the first black hemophiliac I met personally. I had seen his picture and he was shorter than I had imagined. He had the limp and great teeth. He also had a surprise visitor that day, a young woman from Philadelphia who was a film-maker. Her brother had been factor VIII deficient and had recently died of AIDS. The Prince took us to a sidewalk cafe around the corner from his office where we had soup and salad and iced tea. The streets of Washington were busy with pedestrians and traffic. Street vendors hawked their wares.
The woman said that her family and friends were urging her to do a film about hemophilia since there didn’t seem to be a lot out there. She had read the proposal we had drawn up.
“It’s a good story,” she said, “you’ve been working on this for a while, haven’t you?”
“It’s a bear to get funded,” I said.
“Some of the fractionators might fund this,” The Prince said.
“So far Bayer and Glaxo and Armour have said no.”
“The national meeting is in Philadelphia next month. You may want to go there.”
“I was hoping to be filming there, but it’s the money thing.” I said.
“It’s the money thing.”
“It’s the money thing.”
“It’s a good story.”
“Who cares?”
I talked about the weekend retreat at the Camp; the Prince knew many of the people I had met. It was a tight community, a small world, a Family. I wasn’t sure what I was doing there. I had no family attachments with hemophilia—everyone in my family was dying of lung cancer and heart disease. I didn’t feel the pain but I was learning the language. I was hungry for the story and I knew I wouldn’t quit, but I wasn’t all that sure I wouldn’t be fired. Maybe I would be unable to break through the walls because all I was beginning to talk about with those directly connected to the blood thing was the money thing. They already knew about the blood thing.
The Prince pulled out a piece of plastic and picked up lunch. He said he was ready to go on AZT.
“You know how Brent feels about that?” I said. “He thinks it will kill you.”
“It’s my choice,” he said. “It’s nothing but a bunch of letters.”
We walked back to the office in the afternoon sun. I felt confident that I had made another contact. It was important that I got my face out there, let them know who the bear was. I didn’t have a lot of time before I would run out of money to journey to make those contacts. If I didn’t have the contacts in the community there would be no reason for additional funding. There would be no story.

The drive north through the mountains gave me the opportunity to digest the great meal I had partaken. After months of working with Brent and reading about the “Royal Disease” everything suddenly looked different. My focus had brought me face to face at work and at play with the community that was a mystery. They had been devastated over ten years earlier by HIV both psychologically and physically because others hadn’t been paying attention or simply didn’t give a good duck’s ass whether they lived or died.
Dr. Aledort, a former president of the Medical and Scientific Advisory Committee for the National Foundation was quoted in the Philadelphia Enquirer on September 2, 1983 regarding the Essex Study on HTLV-III: “Just another example of hemophiliacs being exposed to another virus.”
The King, Dr. Brinkhaus had recommended Aledort for the job. The King, Dr. Brinkhaus had said in his interview with Susan Resnik in the 90s that he had ZERO tolerance for the sacrificing of human life because of something that had happened to a cab driver in the 1930s but Aledort thought it was acceptable to have a contaminated blood supply. Donor screening and purification processes didn’t begin until 1985.
The vision thing in the film depended on a firm objectivity. The facts. The politics of the AIDS era were only a part of the story. The King, Dr. Brinkhaus was beginning to appear a better candidate for the narrative thread than Brent who hadn’t come onto this earth until 1967—the year factor concentrates opened up a whole new world to hemophiliacs, and then bit them.
I was looking forward to meeting The Prince. Brent had spoken to him about the project but my only contact with him had been the phone call to set up the meeting. Brent had told me that The Prince was a black man, factor IX deficient and HIV positive. The Prince was the lobbyist for the National Foundation. He had been married and unknowingly had infected his wife with HIV. She died of AIDS. Many wives had become infected by hemophiliac husbands, just as many children had been infused with HIV by their mothers.
I stopped at a pay phone and called Muffy’s mother to cancel the appointment I had made for the next day. Muffy answered the phone.
“I had an appointment with your mom for tomorrow. I’m not going to make it so I thought I should call and cancel.” I said.
“You owe me money,” she said.
“Huh?” I asked.
“You owe me money,” she said.
“Why?” I asked.
“Because I took the weekend off,” she said.
“The first rule of being successful in business is you gotta show up for work.”
“You didn’t call me,” she said.
“And you didn’t call me,” I said.
“You owe me money.” she said.
“Please tell your mother that I have to cancel our appointment for tomorrow.”
“You owe me two hundred and thirty dollars,” she said.
“Huh?” I said, “I think I have to say bye here.”
“You owe me money,” she said.
“I’m not hanging up on you, I’m saying good-bye.”
It dawned on me how fortunate I was that I had made the trip alone. I had to keep my enthusiasm in check. Ugh.
I visited with friends and family in Maryland while waiting for the Tuesday meeting with The Prince in D.C. It had taken me over, the blood thing. Blood was all I could talk about with anyone who wasn’t directly connected to the blood thing, blood. I also visited the fascist water man and got another payment. He expressed satisfaction that the boy had died and that he had hired someone else to run the territory at the beach. The boy had been stealing from him, he said.
“Why didn’t you fire him?” I asked.
“He was a relative.” he said.
We both felt badly for the man who had lost a son, but it didn’t take away from the anger toward the son who had failed to perform his work. We sat in the office and tried to make peace, looking for a way out of hating someone because he’d cost us money, not to mention that I held the poor fool partially responsible for my lost education.
I saw the boy’s father and said I was sorry.

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.

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.