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I began the next day with a bagel and coffee in the Lobby Cafe. It was my last shot at the exhibitors. I made the morning rounds of the booths, handing out proposal packets and pitching the film. At lunchtime I found Sherry at the Boss’s booth and we escaped in the rain to Chinatown for tea and octopus soup. She told me how much money there was in the home-care industry. It didn’t take much math to figure out. Ten serious “severes” came to over a million dollars a year gross. The amount of mark-up was a bit of a mystery for an outsider, but I could only guess that deals were cut all the time on volume and connections. The industry had become a massive but tightly secretive beast that fed on itself and the community it served. The community didn’t have very many choices because they were so small and blood products were so specialized. Prophylaxis was being promoted especially to the younger families for preventing joint damage. “Infuse and infuse often” was the catch phrase, and your child will have a normal childhood. What the home-care industry offered was service and convenience, like having water delivered as opposed to getting bottles at the grocery store. Support systems and education were also offered by some home-care companies. For a community that’s spread out home-care provided a link, a network, breaking the isolation that for the hemophiliac was a given in the past when many died before adulthood.
Sherry spoke of how her husband had been a race car driver up until the last week of his dying from AIDS from contaminated factor. Presumably her husband had also had a great mind and good teeth. We stopped at a Chinese grocery store where I bought a box of dried ginseng, and then drove back to the hotel where I made my last round at the funding spoon in the Exhibitor’s hall, pitching and handing out proposals to deaf ears, surrounded by others giving pitches about their services and products and handing out brochures and proposals.
Craig passed me a book that had been financed by the industry. He introduced me to the author, Lureen Kelley, a real dish and the mother of a young hemophiliac. She hadn’t been struck by AIDS in her family. Her son was born after the big problem had been corrected and he used a recombinant factor derived from genetically engineered Chinese hamster ovary cell linings. Laureen was a bit of a celebrity in the hemophilia community. She had written several books and published a news letter directed at the younger generations, all financed by different segments of the industry. The generations of hemophilia had been split apart with the younger, new families of hemophiliacs separating themselves from the older generations because of the stigma of AIDS. Laureen was that open-minded link who was looked up to by all generations and the industry.
Right then it dawned on me. The industry spent money to advertise internally. Their giving back to the community was pure unadulterated advertisement which also offered great service benefits. Like Coca Cola they advertised profusely, but their market was focused and small. A patient for life to a home-care company could mean millions of dollars in profits and most found a factor product that they liked and stuck with it. The older generations were suing the pharmaceuticals—why should they help to tell their story. I was pretty much dead. I was an outsider who wanted to tell the whole story. I continued to pitch with enthusiasm as the outsider with an objective point of view, knowing that this is not what anyone wanted to hear.
The hall closed and the only event left was the ball, funded by a pharmaceutical company. I showered and changed in Craig’s room, then drove over to the aquarium in Camden, New Jersey where I danced with the dish and smiled at the spoon and drove off in the Stang in the rain.
.
Hey diddle, diddle
A rock and a skittle
The Buddha came out of the moon.
The turtle just laughed and kept it real short
And The Queen disappeared from the room.

My friends Patti and Joe had coffee ready in the morning. Patti went off to work and Joe, a night shift worker, bought breakfast. We hashed over hash at a Denny’s near the Interstate. Joe made a sincere contribution to the project by paying for a tank of gas without knowing whether I’d be returning that Friday night.
“I might get lucky,” I said regarding the new day in a hopeful, non-delusional manner. The old friends you cherish, because once upon a time you exchange light and share experience and trust and the mutual light still shines. It’s a rare thing.
Back in Philly, I parked in the under-belly of the hotel and took the elevator to the lobby for a coffee at the cafe and time to plan my attack. The Exhibition Hall seemed the likeliest place to corner the industry people. It was open for both a morning and an afternoon session. There were some classes that seemed interesting, but since no one else was going after money for the project, that had to be my priority. There wouldn’t be another opportunity for personal contact with so much of the industry until the next annual meeting. I had to grab business cards and pass out proposals even if most people thought the idea was a joke.
I trudged through the Exhibition Hall and systematically attempted to identify key members of each team at a booth. I told the story of the progress of the film, being totally open and honest with corporate types who had perfected their masks as attractive crash dummies—and who had probably been selected to work the shows because of general non-offensiveness and yay team spirit. I felt totally naked, bouncing from one booth to the next, not a part of anything or any group, with only a vision still evolving. And all the while, I knew that absolutely no one got it.
Craig must have sensed my isolation and by the time the morning session was finished he caught up with me. I needed air because of the suffocation I was feeling in the hotel. We walked a couple of blocks to downtown.
“I want to get this other knee replaced,” Craig said, limping across the wide streets of Philly. “The fake one doesn’t hurt.”
The fake one didn’t hurt. The knee that was a part of his body since birth was a problem, but advanced science and technology had created something that didn’t hurt, a release from the pain. Craig told me how AIDS was now dominating his life more than hemophilia, though the limp and the pain was a result of hemophilia. We had lunch at a little Italian restaurant where he had linguini and I had a Caesar Salad with anchovies. Craig gave me a list of the prime companies I should go after first so I wouldn’t be spinning my wheels through the entire weekend. If there was time I would hit them all at least twice. Craig had a double room to himself, and he offered me the other bed when he found out that I had commuted to Maryland the night before.
On our way back to the Hotel we passed a group of people handing out flyers on a street corner. The Radical spoke with compassion to all passers-by about the meeting taking place off campus about the blood contamination. It was the Committee of Ten Thousand, COTT, a group formed under the assumption that 10,000 hemophiliacs and their families had been infected with HIV. Craig was a member of the committee. One of their founding members had a class action suit pending against the pharmaceuticals and the meeting was an update. I told the Radical about the film and he volunteered his services as a sound man if we made it out to California. The Radical was severe factor VIII deficient and positive. I passed on the meeting because I thought that the film might get money from the people that they were suing. I didn’t feel that there would be any conflict of interest if I were to get money from the pharmaceuticals because we were dealing with the history of hemophilia and not just the AIDS era.
At the hotel Craig pointed out Dana Kuhn from COTT, a mild factor IX, who very seldom had to use clotting factor. He was a minister by profession. In the early eighties he hurt his ankle while playing basketball and went to a treatment center in Nashville where they infused him for his injury. He became infected with HIV and unknowingly infected his wife, who died of AIDS. He didn’t have the limp but he had the bug. I ran into the Prince, a severe factor IX with the limp, who had also unknowingly infected his wife and lost her to AIDS. Then there was smiling Dale, the severe factor IX, who had escaped the bug and had a new daughter. Six months earlier I had never knowingly met a person with hemophilia in my life. I had become obsessed with the story, unable to cope without an infusion of money to allow me to tell it as I was discovering it. I only wanted to make a film. There was no turning back. It was a material thing. It’s what I had to do—gather material.
Craig suggested that I sit in on a talk by black a woman from South Carolina who had sons with hemophilia and AIDS. There were less than eight other people in the room ranging from health-care professionals to hemophiliacs with AIDS. The woman had come to the meeting with the promise she would remain anonymous because she feared the community in which she lived in South Carolina. It was a small room and a small gathering and still she was afraid to give her real name. It was an American gathering.—AN AMERICAN VALUE.
The afternoon exhibitor session was much of the same for me, bouncing from booth to booth with the hope of hitting on that one sensitive ear. I learned that The Boss was hosting a hospitality suite and magic show that evening. I ran into October in the lobby. She remembered that I had helped her load her car weeks earlier at the Greenville conference. I told her about the magic show as she was on her way out the door for dinner.
“I like magic,” she said.
Chief Clotter, Dr. Gil White, was in the Lounge at the bar off the hotel lobby with a bevy of nurses from the hospital in North Carolina. All the tables were full and he took his scotch at the rail. It was the first time I had seen him since dinner with the King, Dr. Brinkhaus.
“How’s the movie coming?” he asked.
I was startled at first because I didn’t recognize him until he said “Clotter.”
“I think I’m dead,” I said enthusiastically with a touch of wishful thinking. “Nobody here is going to put up any money for this thing.”
“How long will it take you to complete it?” he asked pointedly. “That’s the chief concern,” he added, “would you finish it?”
“Of course I’d finish it, if the money was there,” I said seriously.
“Could you do a short film first, say less than 30 minutes, so they could see what you had in mind?” he asked sincerely.
“Sure, but it’s still going to cost about thirty thousand dollars or so to do it right. And I’m up against a blue suited stone wall.” The doctor who was wearing a blue suit.
“Don’t quit,” he said, “Be like the clinging fire.”
I took a deep breath as the Doctor and his professional harem excused themselves and disappeared through the lobby and out the front door. I moved over to where Brent and Slacker, a twenty something severe factor VIII HIV positive, were guzzling drinks at the rail. “The clinging fire,” I said.
Brad flicked a lighter and held it up to my face. “You need a light,” he said.
I pulled out a Pall Mall and sucked smoke and rubbed the amulet on my chest, deciding I’d better retire to the garage to change clothes for the evening. I had Craig’s room number but he was nowhere in sight and the garage seemed like a safer retreat than the front desk at the dinner hour.
I took the elevator down a few levels and searched for the red Stang, finding I had parked it in one of the more open spots in the garage. I stashed my Foundation satchel and found fresh khakis and a black shirt laid out in the trunk. The traffic was moderate but people seemed more concerned with finding their way through and out of the maze than watching a gray bearded man change clothes. I was so totally self-absorbed at the time I changed without hesitation or hindrance at the opened trunk of the car.
I ventured back up into the hotel and found the hospitality suite that The Boss had arranged and stoked up on shrimp and a few Gin Rickeys, returning my focus to others. I met a redhead called Sherry whose husband had had hemophilia and died of AIDS. She worked for The Boss and greeted me like a friend. I found a seat at a round table and met some people from the Northeast who felt free to use their names even though they were affected by hemophilia and AIDS. One woman who had lost several sons had written a book about how she had been lied to when the contaminated factor was distributed to the community, but she couldn’t get it published. There were so many stories, so many, so very many.
The party moved to a conference room where a stage had been set up for the magician. The Boss, a magician in his own right, performed first with the fast hands of a pickpocket and the panache of a well-liked priest. The other magician merely continued. October showed up halfway through. I took her down on South Street in the red Stang with the top down. We stopped in a little Italian restaurant and drank red wine by candle light while an opera filled the room like a liquid and October capped the day like a cherry. I spilled my glass and stained the white linen table cloth. We left after that. Cheese.

It was a short hop from Baltimore to Philadelphia with no other expectations than adventure. I was totally unprepared to attend a conference. I didn’t have the money to return home for extra clothes, and certainly no accommodations were in the budget. I knew people who would be there and I had no qualms about imposing on someone for floor space, but I didn’t expect any offers.
What I had heard about previous annual meetings is that the HIV hemophilia community had been making noise and protesting with death masks and picket lines. The general feeling was that the pharmaceutical industry and the National Hemophilia Foundation had burned the community with betrayal and indifference over the fact that so many in the community had died of AIDS and the number of deaths was increasing rapidly. This was over ten years after the HIV blood contamination, and with the exception of Ryan White, the devastation of the hemophilia community by AIDS had been a minor news item buried in the deluge of information. The hemophilia community had a very small political voice and they were basically at the mercy of the industry and government that had poisoned them in the first place. The Institute Of Medicine report on the blood supply didn’t own up to any negligence but made strong recommendations to prevent similar problems. The Senator who had introduced the Ricky Ray Bill, to compensate hemophiliacs who had been infected with HIV, did so with reference to the IOM report as well as the lobbying of the mother of the boy for whom the bill was named. Ricky Ray, like Ryan White, was a young hemophiliac who had been driven from school because of AIDS. The Ray family had also had their house burned down. Ricky Ray died when he was fifteen and neither Elton John nor Michael Jackson showed up to hold his hand.
In search of a place to sleep I dropped in on some old friends in Port Deposit, Maryland, about an hour from Philly. I hadn’t seen them in a few years but they were old trusted allies. Patti gave me an earth pendant on a silk band to wrap around my neck for protection. She said it was a centering device, so I guess it was mainly to protect me from myself.
My motives were pure, to tell a story, but the fact that the story wasn’t already out there made me believe that there were those who preferred the story be left alone and resolved within the “family” and extended family, the industry that manufactured the factor concentrates. Many lawsuits had been flying around for years, some resolved in quiet settlement and others dismissed as ungrounded. Though the focus of “the project” was hemophilia and not specifically AIDS and hemophilia, the less the public knew about hemophilia, the better off the industry would be in defending the lawsuits. Hemophilia could be treated as an aberration that happens to certain families and that was their problem. I had gotten another letter of support from another Doctor besides Brinkhaus, who stated that he was satisfied that we would tell a balanced story and he recommended that industry fund it. I had copies of the proposals which were far from perfect, but they were something to go on. Even if I couldn’t get support from the industry at the national meeting, at least I could gain a little more insight into the interconnected facets of hemophilia.
It was raining in Philly when I arrived at the hotel for the meeting. I had picked up a few items of clothing on sale at a mall, an expense that I considered over-indulgent, but my tee shirts and jeans would have hardly been appropriate for the entire weekend. I parked the red Mustang in the garage under the hotel and planned to use it for changing clothes since the barriers and pilings holding everything up and together provided some privacy.
Craig had mentioned that he was on staff for the conference, otherwise I was pretty much on my own. I had called Brent and said that I would be there, but he was still somewhat distancing himself from the project though he had said it was okay to keep his name in the proposals. He was still there but not all there.
I wasn’t trying to fake a limp as I walked up to the counter to register as a consumer, but an old football knee injury was bothering me. I also didn’t try to hide my teeth hoping that they would think I was one of the ones that didn’t know how to work the system yet. The limp was everywhere but people with hemophilia seemed greatly outnumbered by helpers, hunters and health professionals. Once I was signed in for the weekend at the cheaper price I stated my business (and admitted my healthy condition) to anyone who would speak to me. Since I generally had nothing in common with anyone besides being a human being I didn’t have to speak very much. I was totally out of my element—working a crowd—I saw any group larger than three as a potential lynch mob. I had no business being there but I had to do it.
Dale had told me how he enjoyed the National Meeting since it brought him together with so many of his “Blood Brothers” from around the country. That was their “brotherhood,” their group, and that connection was obvious throughout the hotel. But the meeting was organized because what was wrong with the brothers’ blood generated a lot of revenue. Everywhere there were signs: “sponsored by,” “funded by,” “through the generosity of,” hinting at the love/hate relationship of the industry and the consumer. We bring you factor on a silver platter to your door. Give us money. There it was, on the Streets of Philadelphia, Woodstock 3—drugs—the manufacturers, dealers and users having a party, exchanging information and making deals.
I didn’t see any of the protesting that I had heard about the previous meetings—splattered blood and so on—but the topic of AIDS was hard to escape. Most of the generations with the limp were long term positive or had full-blown AIDS. Rooms were set up for safe sex instruction and coping. There were support groups and women and teenaged children dealing with AIDS. Susan Resnik’s dissertation had shown how the hemophilia community had become a community since 1948, before which time hemophiliacs were pretty much on their own without treatment, voice or fellowship. They were still having a lot of problems, but now they had the opportunity to communicate with those who could help, including their “blood brothers.”
I sipped coffee at a cafe in the hotel near the entrance to the lobby and felt quite the outsider but still in awe of the proceedings having read about the early days, that history. I tried to put things in their proper context, historically and pragmatically. To the best of my knowledge, no other film specifically about hemophilia was yet in the works. It was a great story. There had to be money somewhere. The community members I had had contact with thought it was a go od idea. The Doctors had written letters in support. Susan Resnik was an enthusiastic prime expert. Richard Atwood was a wealth of factual information. BG, Linda Robertson was a great community contact. Craig Epsom-Nelms was a story in himself and his unselfconscious openness was truly a joy to experience in a world that generally criticized and hated. He was also a great community contact, and wanted the story of hemophilia told. Brent also wanted the story told, but not enough to jeopardize his job with the pharmaceutical company.
After contemplation and coffee at the café, I got my paperwork together, found a copy shop and put together forty proposals including the letters of support. I went back to the hotel, saw Brent, Craig, the Roman, Dale and others and then attended my first official Opening Session where the new Executive Director spoke of his goals for the National Hemophilia Foundation. At the end of the day the Exhibition Hall opened for the first time with free food and an open bar sponsored by a pharmaceutical company. Brent had a booth there where he distributed his newsletters about HIV not causing AIDS, among other groups with booths expressing views or selling things, home-care companies, the Red Cross, pharmaceutical companies and anything any way related to hemophilia. A variety of opinions abounded. It was truly an American event. On the whole the dress was casual but the number of dark blue suits was staggering.
Brad introduced me to The Boss, Mark Scudiery, from New Jersey who had been one of our initial funders and continued to offer support through his North Carolina staff, BG and Wayne Ward. The Boss staffed his booth with his Jersey group. He looked like Bruce Springsteen in a dark blue suit and worked the crowd like a professional pickpocket, engaging his prey with a warm smile and definite sincere concern for the community he served; he gave back to the community a lot of what he took. The Boss wanted the film made, but of course his first concern was making a living. This was good. I was hoping the other home-care companies would see the value in supporting a film about the community it served, that members of the community supported. We were dealing with a still-living history, including the King, Dr. Brinkhaus who in his late 80s was still vigorous and sharp enough to make an impact on a screen.
Craig introduced me to numerous people and I pitched everybody whether they were wearing a suit, walking with a limp or carrying a plastic bag of goodies. I had to get the word out, I thought. I always felt this sense of urgency as though my hair were on fire to get this thing to the next step before time ran out. I got absolutely nowhere but exhausted. After a few beers and some food, the opening day came to a close and people began to disperse to the hospitality suites. Brent went off with his drug company buddies. Craig was kidnapped by some New York chicks. I paid my way out of the garage and drove back to Port Deposit, Maryland where I slept in a bed and prepared for the next day’s battle. Hump.

Batman said, “Chicks like the car, right?”
Right. Well, I was ready to find out. My first stop when I cruised into the DC area was to see the fascist water man. He was out for the afternoon so I parked in the back of his warehouse, garage and office complex to hide the North Carolina license plates and waited. Passivity was not one of my strong points but I knew that a little bit of a wait and a lot of dancing might get me to Philadelphia for the annual meeting for the National Foundation. Craig had told me that if I registered as a consumer it would only cost me a hundred dollars to gain access to the conferences and festivities. The money from the initial seed money for R&D was long gone to pay car rentals, lawyer fees, phone bills, stationery and mailings—necessary expenditures because of the size of the project we had proposed. Brent was smart—he saw the crunch coming and jumped ship. From the number of contacts I had been gaining, it had also been a good move for the project which was continuing to evolve in focus and scope.
The fascist water man finally arrived back at the warehouse accompanied by the father of the boy who had died. The man had been the German’s most trusted employee. I smiled my jagged edged smile and said, “Here’s Sullivan.” Mister J was startled when he saw me. So I danced for him. I explained why I needed the money that was two weeks late. I reminded him that this was the last of it, and that I had let him off the hook for the next year. I talked to him about his four kids, especially his young daughter, and how lucky he was to have them healthy. Nothing that I said really mattered. What mattered to me was that I never lost my temper, never threatened and resisted the temptation to stuff him into one of those five gallon glass bottles and roll him down the hill into a nearby stream like a message in a bottle. The way I had been spending the money, to learn about the bleeding disorder community, was my egotistical self-righteous ticket to justification. And if he didn’t cut me a few checks, the project was dead. No trip to Philadelphia, no rented car or gas or phones or anything, because no one else was buying in yet. Dozens of phone calls and proposals had been unanswered and delivered. It seemed totally hopeless.
The fascist water man cut me a few checks spread out over the next six weeks. That was my income. That’s how long I had to make any headway. I planned to use every dime toward moving the project forward, the documentary about the history of hemophilia. It was only a Drop of Blood to him. It was my life, do it or die.
The fascist water man was losing the boy’s father, the only delivery man he really trusted. His loss would only be sleep. The boy’s father, an ex-marine, was crushed by the loss of a son. I wondered how the people had felt who had lost sons, infected by the blood supply and the stupidity and ineptness and greed of others. We die. That’s it. This is it. Do the acts we perform in this life make any difference in how or when we die? This is what went through my mind. Should I feel any less for the loss of the man’s son, who had wronged me, than for the lives of people I didn’t know? I had wished the boy harm because he had done me wrong, and I felt no remorse over his death, but I was affected by the pain that his father had to live with. Who was harmed more, the boy or his father? I looked at death as a part of life and even the deaths of those I was close to never affected me anymore once father and mother were gone. Mom and Dad would visit the cemetery plot and stone they had picked out for themselves. They taught me something great. I saw those deaths as the end of their allotment of time which after my grief allowed my life to move forward. Life is precious. I cherished their memory as all memories and all that happens every day in my own allotment of time, only despairing in the mundane and commonplace thought and action at a time when there are no horizons, only lack of money. “The Kingdom of heaven is spread upon the earth and yet you do not see it,” said Joseph Campbell quoting Christ and the Gnostic Bible.
I visited my younger brother and sister and their children and my friends in Baltimore. None of them understood what I was doing or why I was going to a hemophilia meeting in Philadelphia. We had fun anyway. At my younger brother’s patent redneck bar I found out the chicks liked the car. The next day I would be in Philadelphia but the night gave me a young blonde, published poet barmaid and a six-pack of beer into the wee small hours of a warm clear October morning with the top down and the seats pulled back while she read her poetry and I revved my engine to flamenco music and life. You get what you need.
Rupert says, “You can rhyme if you want to.
But you better beware, ‘cause I really don’t care
If your spelling’s all that great—Babe.

Once that first letter was in hand I called Fabio, still believing he was serious about helping independents in film. Well, I was as independent as they get, but then Fabio began instructing me on how to become not so independent and more sociably acceptable. “If you want to get money for this thing,” he said, “you’ve got to kiss a lot of ass and go to the right parties.”
And I figured he was right. But I was so abrasive, and my teeth were so bad, that whenever I went to kiss ass I ended up biting. I had a very difficult time not being myself. I felt it very natural to try to be nice to people, hold doors and say thank you and so on, but I had trouble with small talk. I could not bring myself to say, fine thank you, how are you because it seemed insincere to say that all the time when everybody knows well that we are not fine. There’s quite a bit of work to be done on this consciousness thing. If everything was fine there would be no need to “kiss ass.”
After the dinner I had to lay low until the next payment from the fascist water man, so I turned in the Intrepid and worked the phones, keeping in touch with Craig and BG and others, all the while sending out proposals and calling foundations. Craig had written a letter of support from ACE about AIDS in the blood disorder community and why he felt the story had to be told.
“I need money,” I said in every phone call and proposal. Nothing happened.
When it came time to head North to pick up money from the fascist water man, I went by Triangle for a car. Since they took a signed check and didn’t deposit it until I returned, it didn’t matter that there was no money in the bank. The only car they said they could give me was a candy apple red Mustang convertible. I was only expecting to be gone for a few days so I packed lightly and drove over to have lunch with BG and Craig and thank him for the letter.
The King, Dr. Brinkhaus had mentioned a colleague at the hospital who might be able to direct us to the major funders we needed because of his international connections. Over lunch I discussed this with BG and Craig.
“Call him up and go see him,” BG said with her eyes wide.
I called and made the appointment with the man for that afternoon. When I got back to the table Craig asked me if I had planned on attending the annual meeting for the Foundation in Philadelphia later in the week. He gave me the information I would need to find the hotel and said that he was attending. Brent had mentioned the meeting and planned on having a booth there. BG said that Dale, the Roman and the frizzy blonde from Camp Carefree would be there, as would BG’s boss from New Jersey.
“The entire hemophilia industry is represented there,” she said.
“I have to see the fascist water man first,” I said.
After lunch we dropped Craig back at his office and BG and I went to see the man in Chapel Hill. We spent a short period of time together and he gave me an unedited copy of the 1995 Institute of Medicine Report on HIV and the Blood Supply, “An Analysis of Crisis Decision Making.” “Oh, no,” I thought, “more blood stuff to read.”
“Don’t tell anybody where you got this,” he said.
That remark changed everything. I thought the report was the sacred Torah of the Blood Supply. The blood supply doesn’t just affect the hemophilia community in a country where everybody is fine, thank you, and traffic accidents and violence and burn victims are a normal part of everyday life, not to mention knife happy surgeons. And the hemophilia community is the “canary in the coal mine” when it comes to the safety of the blood supply. Whatever contaminates the blood, they get it first.
The man also gave me a list of companies that might be interested in funding a project about hemophilia. I dropped BG back at her apartment and then headed North in the Red Stang to see Mister J the fascist water man. The weather was fine. I drove with the top down, and I was fine, thank you, how are you?