FIX THE HAIR KEEP THE LIMP
The gang went to the North end of the beach for a sandy cookout and a swim on Sunday. I stayed in town and contemplated how long it would take to get enough money to do what we had to do. Brent had gotten together a list of possible subjects for the story we wanted to present. And we had sent out some letters to see who might be willing to participate in the film. At that point I was still very much behind the scenes as far as the people we were contacting were concerned, just a name on a proposal. I had a lot of questions about the personal side of hemophilia, and Brent was the key. And I really didn’t know if anyone else was truly taking our project seriously even the two companies that sent money. I was as serious as a heart attack.
We had a rough outline of what and possibly who besides Brent we hoped we would be covering pretty early on. “Fix the hair. Keep the limp,” I told Brad. I played with the idea of the film being through the eyes of a child, not only to cover up my own ignorance, but because I was so fascinated by it all. It was pure discovery, getting inside of a lifetime physical ailment that had such a fascinating dramatic history. I was objectively observing the experience on a compassionate, empathetic level, without going through any of that excruciating physical pain. That’s a part of the deal, the lifetime of pain.
Did I choose the project or did the project choose me? This was development at its most basic, not knowing anything, not having any money to work with, not having any kind of a track record in film-making, not having a heck of a lot of support, and sweeping out a barbershop in order to have a couch to sleep on. I was just getting the gist of the blood contamination and the major multinational pharmaceuticals involved. Heck, I even felt that they might finance the deal. Why not? I really had to get my hands on some money and a place to live.
Brenda’s attention to Lemon did have benefits. It made Brent feel that he had to prove himself to his woman. Come Monday, after we dropped Lemon at the airport, a newfound enthusiasm sparked Brent’s drive to make the film.
The word slowly got out around the Cotton Exchange about what we were trying to do. I was from out of nowhere, the new kid in town, so basically I was given the benefit of the doubt. Besides, I had talked Brent into keeping his office in the same building instead of moving out, and he did pay his rent. He had a sweetheart of a deal from the pharmaceutical company, where he wrote a few funny articles for a hemophilia magazine and did some market research in the hemophilia community. In return, they gave him money and the clotting factor which he used about once a week, factor VIII. He used a purified mono-clonal factor, derived from pooled human plasma, which would have cost him about sixty thousand dollars a year. That was another fascinating aspect of hemophilia, how much it cost to treat. Brent was considered a “moderate” hemophiliac, or to be politically correct, PWH, person with hemophilia, Hon—whatever.
I had met one other person in the area with hemophilia. He was a “mild” and very seldom used factor—only when he was injured, or had surgery or dental work. It wasn’t quite the same, especially since he had escaped the bug. To him, especially since he had escaped the bug, hemophilia was simply an occasional nuisance. But hemophilia definitely was a major influence on Brent’s life. That lifelong pain and constant need for treatment is like the commitment of an artist. Is it real or is it a hobby? Does it rule your life, or is it a diversion? Are you working at something else so one day you can do what you want to do, or are you doing what you want to do, and sacrificing everything else: family, friends, money, prestige, food, sanity, conformity and so on. The question was, are you a mild, a moderate or a severe? Whether it’s art or hemophilia, nobody really gives a good duck’s ass. Well, if you paid Fish, he did. So far, I hadn’t met anyone else linked to the hemophilia industry, but I made certain that my name appeared in all correspondence about the film.
Kay operated a biofeedback business in an office down the hall from Brent in downtown Wilmington. When she heard about our hemophilia project she mentioned the King, Dr. Brinkhaus, a blood doctor she had worked with in the early seventies. It didn’t seem to have any significance when she first brought it up because Brent didn’t take her very seriously. He didn’t seem to take anyone or anything seriously. Everything was a joke. That little needle he had to frequently stick in a vein had a point to it, however. When the skin on those knees and elbows stretched and got puffy from the blood, what stopped the bleeding and eased the pressure came through that needle. Kay mentioned that the King, Dr. Brinkhaus was one of the people responsible for the development of factor concentrates. Brent did know who the King, Dr. Brinkhaus was, a legend in hemophilia research. We saw Kay practically every day during the week.