HRA HEMOPHILIA RESOURCES OF AMERICA
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.