NO DANCING IN THE AISLE
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
August 5th, 2008 at 2:58 pm
wudang…
The average person would might feel that spending the time to get news on this subject is a waste of money….