Archive for July 25th, 2008

NO DANCING IN THE AISLE

Friday, July 25th, 2008

Turtle’s mom got together his med pack, a plastic container of sections marked a.m. and p.m. for each day of the week, and his case of infusion works for the hemophilia. He threw together a duffel of clothes and we were out the door. Neither of us really knew what to expect. The kid had been born after I had been a partner in two bars. I still woke up in the morning and looked in the mirror exclaiming, “No alimony, no child support, HUAHH!!” A different twenty-one-year-old had really screwed up my plans by screwing up a business that I had built for nine years, and the kids at the film school turned out to be devious little pricks that hated their fathers not to mention Slacker Muffy. Turtle’s father had killed himself, deserted him. There was no love lost there either. It was, to put it mildly, an impossible situation. But I had a nice car and Turtle liked nice cars. He loved to drive but his hemophilia doctor had suggested that he give up driving. The kid could hardly walk but he still liked to drive. His desire was bigger than his sperm count with all the shit they had him on.

Henry Jones, though he was HIV positive, seemed as healthy as a stallion, and had the limp and great teeth. He took nothing for the HIV. Brent was still very healthy as was the Roman and neither took anything for HIV. Craig, the Earl and Larkey were all on heavy medication and they died. Turtle was thoroughly medicated and he was sick. Some of what I had read in Doctor Duesberg’s, the German retro virologist, works actually made sense. The fact that AIDS had become a major industry was not to be disputed, it was a business. In America businesses that make money are good. If they fail, they are not good. The AIDS business was good. People still died, but the business made money–AN AMERICAN VALUE.

On the three and a half hour drive back to Wilmington the kid talked my ear off. Wayne Ward had warned me, and Wayne had the patience of a Taoist Monk. One thing I had gotten from the earlier contact with guys with hemophilia is that they all had this great sense of humor. In my phone conversations Turtle also proved to be a funny guy. So instead of listening passively on the drive back I began to comment on some of the things that I thought were funny, not realizing that he believed that he was spouting forth great pearls of wisdom. I soon learned that he had as much ego as Brent and Dale but not nearly the flexibility.

“Why are you making fun of me?” he said.

“I’m not making fun of you,” I told him.

“Everything I say you turn it around into a joke,” he exploded with his teeth clenched and his voice coming through his nose.

“Do you want me to be an Apostle and write your fuckin’ bible? We’re going to have fun,” I told him.

“How can I have fun if you make fun of me,” he said.

“I’m not making fun of you, but some of the shit you say is pretty ridiculous,” I said.

“See, you’re making fun of me,” he said.

“I don’t want to say I’m sorry all weekend, so let’s find out what works real quick.”

“I better infuse,” he said.

He kicked my ass. He reached back and grabbed his case and as we were driving down the highway through a small burg in South Eastern North Carolina he whipped out his works and his factor and jabbed himself in the arm with the needle. He was severe factor VIII deficient. He had good teeth.

“Don’t make fun of me,” he said.

He blew me off and I shut up. I was seeing another great mind in action. He didn’t stop talking and I didn’t take notes and we arrived back at my cave where we unpacked and then went out shopping for some food and a bottle of liquor. Turtle got on the computer and played solitaire. He took his meds on an empty stomach, following the specific instructions he had been given by the doctor. I offered him my futon, planning to take the couch. He said that he had to sleep sitting up, so we rigged a comfortable chair and a sofa bed so he could still put his feet up if he wanted. It had been an awfully long day so sleep came easily for me. I heard him gagging in the middle of the night, but he said he was okay.

On Saturday morning, after the morning meds, Chanter came by to meet Turtle and stayed long enough to take some pictures of him in the garden among the giant sunflowers. After she left, Turtle and I drove South to Myrtle Beach. We had our definite limitations on what we could and couldn’t do. The kid wanted to go swimming and I wasn’t ready for that. He could barely walk. We found a parking spot and I pushed him in his wheelchair until we found a bar that had a Harley parked out front. The task of the day was to get him on a Harley. We ended up getting a bit drunk instead, with a possible ride set for the next day. We stopped off for some food before the ride home and he ordered the works and couldn’t eat it. It was all new to me, this sickness in the young stuff. I’d been through it with the folks but they had been past any adventuring, though Mom still liked to go shopping until she couldn’t walk anymore. Turtle was at an age where he wanted to do, really do, but the physical capacity for most of what he wanted to do had been taken away from him.

When we got back to Wilmington I talked him into going to see Shakespeare’s “Twelfth Night” in the amphitheater down on the Lake. It was a freebee so it was within the budget. After overcoming the obstacles of steps we parked the wheelchair in the back and the kid actually enjoyed the production. He continued to be a chick magnet. Women who wouldn’t give me the time of day for fear of my asking for a handout came up and talked to us. I knew I couldn’t follow up on anything because that type of entertainment wasn’t in the budget—and when the kid was gone, so was the car.

We ventured to downtown Wilmington to my favorite coffee shop, which also carried Guinness, and downed a pint before calling it a night. Once again I heard the gagging in the middle of the night. I gave him his own can and extra towels and the next morning his legs began to shake. There was a problem.

He had been taking his meds on an empty stomach so I jumped on the internet and looked up Ritonivir. It clearly stated that it was to be taken with food and even yogurt, to cut down on the side effects, and no booze. There was even a letter to health care providers stating that Ritonivir should be taken with meals.

The doctor had given him the wrong instructions.

I called his mom and told her what I had found out and confirmed which protease inhibitor he was on. The two others on the market at the time had the empty stomach rule, but Ritonivir was to be taken with meals. “How are you?” the doctor had asked, but he didn’t give a duck’s ass. We switched up on the routine but still Turtle’s legs shook. He still wanted to return to Myrtle Beach on Sunday to run the go-karts, so we went back.

When we got to the track, the go-karts that he wanted were no longer there—I couldn’t find them anyway– so he threw a temper tantrum. I was totally out of my element. He took off in his wheelchair and found a shooting gallery in the arcade. I could imagine that every target he hit had my face on it. His legs were shaking badly but he still wanted to hang out. I figured the kid would have died there but he was so pissed off at everything they wouldn’t take him on the other side. We both hung in there with no other options but dealing with one another. I figured I had blown the entire project because every action and word became confrontational. I really didn’t give a duck’s ass at that point; the entire project seemed like more trouble than it was worth. I certainly wasn’t doing it for the money or the social contacts. Everybody I had been dealing with was either sick or made their money from the sick. The whole thing was sick. And then I thought about the doctor with his self-important all-knowing attitude who had given the wrong instructions on when to take the meds, and suddenly everything seemed normal. The kid just wanted to live. Life is really tough.

By Monday Turtle wasn’t looking too hot but we still got it together to take in a movie matinee. His Mom was coming for him with a friend on Tuesday. When we got back from the movie Turtle was pretty much immobilized and it was hot. We moved the computer into the small office where the air conditioner was operational. He sat in front of the computer and played solitaire. We were beyond any conversation. I read and waited.

It was raining when they came for him. His legs were shaking badly. I had printed out all the information I had found about his meds and passed them to Turtle’s mom. After dealing with the pain for most of her life she took it without any outward show. I didn’t know if she was angry at me or the doctor or anything. She simply took her son with her. Turtle crawl-stepped out to the car with his cane and his arm on a helping arm. The house was empty again. There were a few towels filled with vomit. I tossed them out on the lawn in the rain. I moved my computer back out to the kitchen and played solitaire. SP8

ANOTHER FUNERAL

Friday, July 25th, 2008

Spring came on like gang busters and the sunflowers reached for the sun. At ten cents a pack I filled the raised beds with mounds of seeds and a dozen and a half tomato plants at twenty-five cents a piece. Chanter’s Saturday morning visits became regular and we kept sending out proposals and hounding Clark Gable and Van Johnson, who kept putting us off because they couldn’t get the partners in one room. Go figure.

After the fiasco with the pig people, and not eager to deal with any white coats for the short film, BG put me on to the Real George McCoy—the first recorded human to have been treated with recombinant factor VIII made with DNA technology. The doctor who had treated him was Chief Clotter, Dr. Gilbert White. I had sent George a script and he was a natural for some of the more technical stuff.

The Boss sent another thousand dollars, so we were still in the ballgame. The Earl died. I had only met him at Camp Care Free and he never returned my phone calls, but I knew he’d been sick. The fact that other members of the community would be attending his services and the fact that I could afford it at the moment helped me make the quantum leap to go. He had been buried out of state and the services were being held by a competitor of the Boss in Greensboro, and Wayne was being sued by them for unfair trade practices, so Wayne and BG were not planning to attend. Wayne had made trips North to see the Earl before he died because that’s what kind of guy Wayne was—Earl worked for the competitor, but Wayne’s trips were to an old friend not a rival. Wayne had found the Holy Grail—that cup of compassion–not bad for a drug dealer, but he was still an American businessman.

I copped a car and called SP8 on my way to the service to offer a ride. His mother and stepfather were working so he accepted. I drove to his house with the directions he gave me and found him without much problem. The door was unlocked when I arrived and I made my way through the kitchen and back to SP8’s cave. I had spoken to him several times by telephone and his voice was so quiet I often had trouble understanding him, but he was always sharp and funny. He had his own space with giant screen TV and a waterbed where he spent much of his time. He had just begun treatments with the new protease inhibitors and was a little bit shaky but game. I walked into his room where he was stretched out watching TV wearing shorts and no shirt.

“Hey, SP8,” I said, “I thought you would be ready.”

“What’s this SP8 shit, motherfucker. Call me turtle.”

“Turtle?”

“That’s right. SP8 is a personal thing.”

“Okay, Turtle. We’re late. Get it up.” I said.

Every movement he made looked as though it involved pain and extreme effort. He crawl-stepped whenever he could just to keep in touch with walking, hanging onto every movement as though it could be his last. He threw tee shirt with a rude logo over his shorts and he was ready. Nobody would question him. Nobody could feel his pain. I loaded the wheelchair in the trunk of the car just in case and we headed to the services with Turtle pointing out the speed traps. He also handled the radio in the gold Taurus GL, surfing the channels. I stumped him when I named the group and songs on the classic rock station in a few notes, songs from before he was born, songs from the early seventies.

We arrived at the services, which were already underway, and cruised to a stop in the parking lot not very far from the tent. It was far enough for me to ask him if he wanted his wheelchair, but he chose to crawl-step with his cane. As we approached the tent I saw Dale Brisson and Kathy and Charley Register and Richard Atwood and the Roman. I didn’t recognize most of the people at the small gathering but enough not to feel a complete outsider. I had known about hemophilia for fourteen months and this was the third death of a person with whom I had had some direct contact. There were many more, one a day I was told, but these deaths had voices I knew. They had died from the complications of AIDS and hemophilia–Hemophilia because of the contaminated blood product which treated it, the same thing that turned the turtle into a tortoise in his movements.

When we got to the tent the turtle went off on his own to other people he knew and I sat in a chair in the rear as the mourners gave remembrance to the dead. Dale Brisson read a couple of his own poems: “The Battle Hymn of the Hemophiliac” and “Carrier Mom.” There were cookies and beverages afterwards and I met a black man, Henry Jones, who was severe factor VIII and positive and pissed off. He gave me his number.

Wayne showed up as the sky grew dark and Turtle and I followed him to a restaurant where we drank whiskey and ate chips and flirted with the waitress, having fun. Wayne Ward left us there, and then I began to notice that everything was an argument. Everything became a conflict. I thought it was funny but the kid was pissed off.

“Don’t make fun of me,” he said.

“I’m not making fun of you,” I told him.

“Why are you laughing? he said.

“Because we’re arguing over silly shit,” I said.

“You talkin’ to me,” he said with his eyes narrowed. “I don’t argue over silly shit.”

He was twenty-one years old. I knew I shouldn’t coddle him. He got enough of that at home. I may have been wrong there, but if we were going to spend any time together I wanted it to be authentic.

“I’m not your father,” I said.

“My father killed himself,” he said.

“I’m sorry. I’m your friend and I won’t hurt you. You are safe with me but I ain’t going to take any shit off of you and I don’t expect you to take any shit off of me so we’ll have to work it out.”

“How come you keep giving me shit?” he asked.

“Maybe I’m just a screwed up guy and I don’t know no better. But I ain’t gonna kiss your ass.” I really didn’t think that I was giving him any shit. But this was actually the first time that we were hanging out together without his Mom or Wayne and they had more patience than I did. He was a good kid. I honestly liked him. But if he didn’t have full blown AIDS and hemophilia I probably wouldn’t have been there and neither would he. This is where our paths had converged. That’s what it all had been about, the entire fourteen months, not working on a project but trudging through the woods and creating a path that I could look back upon but no one else would be able to follow.

And then we left the crowded restaurant, Turtle crawl-steppin’ with his cane and me clearing the way for him. Anyone watching the two of us must have been puzzled. He told me he had gotten a couple of shots at the bar. He was drunk. I wasn’t familiar with any of the meds at that point, but even the way he smoked cigarettes was his responsibility, the same as any self-destructive behavior. What are you going to tell a twenty-one year old with AIDS–”Don’t do it?” After his own government, an entire industry, and even the National Hemophilia Foundation kept the facts hidden for so long that the blood supply that he was dependent upon for his blood clotting factor was contaminated with HIV.

We got lost on the way home and his mom was waiting up when we got there. She made a cot up in his room for me and I got to spend the night at the feet of a pretty tough little guy. It was quite an honor. I had planned on returning the car to Triangle right after the services for the Earl, but once again from death came new life. At Craig’s funeral I had picked up Kathy and Charley for the film. When I learned of Larkey Deneff’s death at the Ricky Ray Rally the Preacher promised a grand to keep things alive. And the Earl got me to spend time with the Turtle and I got to meet Henry Jones. There had been other instances also, but maybe there had simply been so many deaths and occasionally something good happens, like a good meal after the sacrifice. Anyway, I don’t like to miss a good funeral.

The next morning after a shower and coffee I was invited to accompany Turtle and his Mom to Winston-Salem where Turtle was to see his doctor since he had just started the new protease inhibitor, Ritonivir, along with his AZT and a few other things that were supposed to help him. I saw it as a great honor and went along. We took the Taurus and made the hour’s drive to the hospital where I dropped them at the entrance while I parked the car. I caught up to them quickly in the hospital and we went to the cancer ward waiting room where Turtle took a seat far away from his Mom. It was a guy thing.

I sat next to Turtle while we waited. A beautiful young woman came and sat next to us and struck up a conversation. The kid was a chick magnet. I suspected as much from the fun we had had with the waitress the night before, but this was a reaffirmation. We were called, much too quickly, into a back examination room. I had never witnessed such great service in a hospital. I still occasionally heard the wonderfully absurd exchange:

“How are you?”

“Fine, thank you.”

“How are you.”

“Fine, thank you.”

This was a hospital. Most of the people were sick or dealing with sickness. How could anyone be exposed to such pain and suffering all the time and still answer, “Fine, thank you?”

I was allowed to go back to the examination room with Turtle and his Mom and sure enough, when the doctor came in he asked, “How are you?”

Turtle answered, “I have AIDS, what do you think?”

The examination went quickly and we were out of there in less than ten minutes. That was it. We stopped for breakfast on the way back to Turtle’s house and I asked him if he wanted to drive back to Wilmington with me for a few days, being careful to tell him that I didn’t have a TV and the money was tight. I knew that the opportunity wouldn’t present itself again in the near future days since time with the kid was project-related. I justified the expense of keeping the car a few extra days only because of my personal circumstances.