AIDS was… an illness in stages, a very long flight of steps that led assuredly to death, but whose every step represented a unique apprenticeship. It was a disease that gave death time to live and its victims time to die, time to discover time, and in the end to discover life.~ Hervé Guibert
Isaac tells his story (2)
Continued from… Isaac tells his story (1)
Isaac stopped talking. Annie just sat there. She had tears in her eyes. Even though she already knew some things he had just told her, it now seemed much more emotional hearing him talk about it. Her heart ached for her friend. Before she could say anything, Isaac started talking again.
No one knew about me being HIV positive. No one at work, that is. I just couldn’t tell them. I didn’t want anyone to know, because I was afraid I would become an outcast. Then, in September 1996, the doctor told me I had an ulcer. I had to eat almost constantly so I always had something in my stomach. However, apparently it was not an ulcer, because I was admitted to hospital, where I almost died. I had always hoped the doctors had made a mistake in 1986. Unfortunately, they did not.
In 1996, I had to fight hard to stay alive. The doctors asked my mother to come down to Cape Town, to be with me until the end. I couldn’t eat anymore. Everything came out. My lungs were affected too. I lost so much weight, I was only skin and bone. No one thought I would get out of the hospital. Neither did I. While I was in the hospital, I sold my dining room set to a friend. I accepted a down payment and in the testament I had drawn up, I mentioned the dining room set was his, after payment of the rest of the money. When I was discharged from the hospital, I heard this so-called friend told everyone he had bought a dining room set, but he had to wait for the bloke to die before he could have it. To save face – his, not mine – I took the rest of the money and allowed him to move the set out of my house.
It took until about April 1997 before I had gained the weight I had lost in hospital. Only then I felt as well as I did before I had been hospitalized. I remember I visited some friends for a barbecue. They were bragging about how many men they had had in their lives. I just sat there, listening to them. All I could think of was that I was with only one man and now I have to carry this burden. It just goes to show that God has a plan with each and every one of us. I believe in God, but still I am afraid to die.
That was something I constantly thought about once I was out of the hospital. I think I went into some kind of depression. I stayed in bed for most of the time. I only got up and went out for the necessary groceries and for the rest of the time, I was in bed. I knew I needed help. I had no one I could talk to.
While I was in the hospital in 1996, thinking I would never leave it again, I had arranged to be transferred to a hospice if the doctors thought my end was nearing. Those people eventually arranged for me to see a psychologist. My military doctor welcomed the fact I had someone to speak to. She said it was difficult for people who were getting ready to die, to pick up their normal lives again when they recover. I guess I could’ve spoken to my mother, but we never had a strong bond between us. She once called me to watch a program on television with a gay preacher. After the program, she called me and said people in the Netherlands don’t look down on gays. I said then maybe I should move to the Netherlands. She asked me to put that out of my head until after her death.
I want to live. Back then; having those depressed feelings, there was one thing I always knew without any doubt: I want to live! If they would have told me then or if they would tell me now I should use this or that to live, I will jump on it immediately. I will do anything, if only I could get rid of this … this … this thing in my body!
Halfway through July 1997, my CD4+ count was very low, and I feared I had developed AIDS. I was afraid to get ill again. Then the doctor summoned me to the hospital two months before I actually had to see her again. My CD4+ count was so low the doctor wanted to see me immediately. She – the army doctor – had contacted my civilian doctor. Together they had decided I should start on a prevention medicine. I then knew they too were convinced that I had developed AIDS.
A month later, I felt better. Whether it was the medicine or the conversations with the psychologist that had helped – I don’t know. I just felt more positive. Two months later, the three-month trial of AZT, 3TC and Loveride I was on, was over. Because the manufacturers didn’t know for sure whether it helped, they stopped the production of Loveride. The military hospital promised me I could get 3TC from them and that they would provide me with Loveride for as long as they had it in stock. At that stage, my CD4+ count had increased, and the doctor wanted to test my blood for the viral load.
Before I got the result of the blood tests, I one day had to go home earlier because I didn’t feel well. Kathy made an appointment for me at the doctor. She told me I had a yellow complexion and when I got to the doctor, they saw it too. I had to give them stool and urine samples. My liver was enlarged a bit, and the doctor told me I should eat more fruit and vegetables and less meat. Two weeks later, I had to go back for more blood work. The doctor told me my blood had the same characteristics of the blood of an alcoholic! Yet again, she urged me not to eat too much meat, but to eat more fruit and veggies. Apparently, the pills I had to take had a less positive influence on my liver and my kidneys. I took the doctor’s advice seriously. I was careful with what I ate. One day, after I had eaten, I noticed I had a heavy feeling on my stomach. However, there was one thing I knew for sure back then: I should stay positive. Otherwise, this illness would win too quickly. I know it will win in the end, but I want to keep it from reaching the finishing line for as long as I can.
I don’t know if it was my positive thinking, a good combination of medicine or the AIDS walk I did on the first day of December in 1997, but when I got to the doctor a couple of days later, my CD4+ count was so high they wanted me to stop with my medicine for a while. They explained my body had built up some resistance to the medicine I was using. They were going to order new meds. I didn’t care what it was, I felt good. Back then, it felt as if I had won the race. I want to feel like that again. I will feel like that again!
Both Annie and Isaac were surprised when the male nurse walked into the room to give Isaac his daily injection. Without either of them noticing it, hours had passed since Isaac had started talking. That evening, during visiting hours, no one noticed Annie was quiet. Even though she joined the conversation at times, her thoughts were still on Isaac’s monologue of hours before. Almost everything he had told her that afternoon, she had read in his letters, but hearing him talk about his illness, his hopes and his fears were a lot different from reading about it.
To be continued… Reading Isaac’s words (1)
Note: This series is a rework of a self-published book (2009), rewritten for this blog, and in loving memory of a dear friend who suffered from and passed because of AIDS. Keep in mind this story happens in the late eighties and throughout the nineties. Names of characters have been changed to protect their privacy.
© Rebel’s Notes
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