AIDS / HIV – What is AIDS?

AIDS is not a world away hidden in some box. It is here. AIDS will claim the lives of all who cross its path. It is a disease hat doesn’t care who you are or where you are from. So far, people seem oblivious to the horror of It. It is as if people feel they have some kind of force field that it can not penetrate. AIDS has penetrated my force field not once but numerous times. If people do not become more educated and safer with their chosen intimate encounters AIDS may be knocking on their doors. There is no cure nor is there any question that if people continue to act invincible AIDS will win!

When I first heard about AIDS, I looked at the disease as if it were something that would never touch my life. I thought of it as a disease that existed in some third world country. I thought of AIDS as a horrific tragedy but not my tragedy. The first knock I received inside my invincible bubble came when I was about ten years old. I lived with my father and my little brother. Neither my brother nor I had seen or heard from our mom in four years. Suddenly, out of the blue, we started talking to her. Shortly after we started talking to her, she told us she had cancer. Here it was my mom suddenly back in my life and she was dying. A few months later, she came down to visit us. It was wonderful being in her arms and seeing her smile. It wasn’t all good though. It was on this visit that my older sister called franticly begging my dad not to sleep with my mom. Finally, she gave an explanation. My mom didn’t have cancer. She had HIV I didn’t know anything about the disease other than once infected it was a death sentence. So I begin to research everything I could about the disease. My mom disappeared before we could ask her about it and later on the phone she wouldn’t talk about it much. Through my sister, we were kept informed about my mother’s condition.

I did not see my mother’s day to day life but I knew what kind of person she was. Though I wouldn’t swear my life on the information I received, I do believe 99 percent of it to be authentic. My mother was a wild woman and she lived by her own rules. She had a rough life growing up. Although she tried numerous times to pull herself out, she couldn’t. I hold no anger for any choice she made because they were her choices to make. I do wish she had been stronger and had made wiser choices. Once she found out she was sick, she decided to rule life regardless of the consequence.

My mother was a drug user and had multiple sexual partners that were both male and female. This behavior didn’t stop once she was found out she was infected. In fact, it was all the more intensified. My mother was one of those people who knowingly infected numerous people. She also chose not to take the medication for HIV and AIDS. The only time she would take it was when she was hospitalized, which did not happen more than a handful of times. I saw my mom about five months before she died in 1996. She looked great. She was a little thinner than normal and she didn’t have any teeth. She was so happy. She looked like a kid on Christmas morning. It was the first time I had seen her in six years. Five months later, she was in the hospital. Her body was swollen everywhere. All I know is that she died from drinking water that was unclean. It was water that came from the tap in her run-down apartment. My mother died from drinking water! How unbelievable is it to die from drinking water?

About a year after my mom visited, my father started to get rashes all over his body. He went to the hospital but they could not figure out what was causing the rashes. They thought maybe it was dust, so we thoroughly cleaned our house top to bottom. The rash did not go away. One night, a few weeks after the rashes started, I was woken in the middle of the night. My dad was calling my name but so differently than he had ever sounded before. There was a frantic plea in his voice that scared me so immensely. I jumped out of bed and ran to my father whom was stumbling up the stairs from his bedroom. He told me couldn’t see. He was blind! As the man I had known as unbreakable stood before me, frightened, I wanted to crumble but I couldn’t. I dialed my uncle’s phone number and told them what had happened. As we waited for them to arrive, I dressed my father. It seemed as if time stood still as we waited for my uncle’s wife to arrive to take my father to the hospital. By the next day, my father’s eyesight had returned and he informed me he was going to have the doctors test him for HIV. He swore it was just a precaution and I believed him. When he got the results back, he told me he wasn’t sick from HIV.

After he left the hospital, all signs of anything that had happened had disappeared. I forgot all about it until an overheard conversation. When I confronted him again, he told me he was sick. He told me that the doctors thought he had been infected for many years. For awhile, we took precautions. We took silly precautions like not drinking after him. Then we forgot he looked healthy. Well, I did anyway. He was the same man he had always been. There was nothing to show that he was sick. I believed my father was so tough that he would not die from HIV or AIDS. I believed he would beat it. Four years later, he already had full blown AIDS. My father took all the medication he was supposed to. Slowly, he began to lose weight.

Five years after my father was initially diagnosed, his behavior became erratic. He believed he was being followed. He believed that our family was in the mob. He got upset very easily. We went to a family reunion and my family freaked out. They thought he was insane because he was jumping around on tables in the park, shouting how much he loved the family. He tried to apologize for everything he had ever done. With me, he continued to be paranoid. There was craziness in his eyes. My family wanted to have him evaluated. He avoided all of them, so the cops picked him up and put him in a loony bin. He remained there for a few months but it wasn’t very long. Although he had moments of insanity, he could still control it somewhat.

I was living in Alaska when my father got out of the institution. I am unsure of the day’s events but one day, I got a call that my father was paralyzed from the waist down. Apparently, he had lesions on his spinal cord that caused him to lose movement of his legs. I was horrified when I was informed that his erratic behavior was caused from lesions on his brain. It was still unreal until I went to visit him in the summer of 1995. When I walked into the hospital room, the man that lay in the bed was a stranger. The man I had always known as unbreakable lay in the bed so thin and weak that he looked almost like a skeleton. He was wearing diapers and he hated it. We were covered in sterile hospital gowns, masks, and gloves. My father wouldn’t let us be in the room when they changed him or lifted him in or out of bed. On some days, he was in a lot of pain so he often smoked a little to ease the suffering. My father was still my father and we had a few really good talks. Even in the face of the disease, I didn’t believe he was going to die. I left after a few weeks to return to school in Alaska. I received many reports that he was getting worse. He had lost all muscle mass and every time he moved, he screamed out in pain. He got so bad that he would only see the family. He couldn’t communicate very well anymore and in December of 1995, he went into the hospital for the last time. My family decided that my dad was in so much pain that they needed to help him let go. They had the doctors give him some medicine to help him die.

My father was a heterosexual. He hadn’t used drugs, other than marijuana, since I was a baby. He did have relations with people after he was infected but he swore he was protected. I know for a fact that many of his girlfriends over the years did not know he was sick. I don’t know if he did use protection or not. I know of seven people my dad dated. One of these women did get infected and one of the other women was well known for sleeping around. I have no proof as to whether my father infected anyone, other than the one girlfriend, but I wouldn’t take the chance of being with anyone from Wyoming.

Right after my dad found out he was infected, he told some close friends he had known all his life and they turned their backs on him. Because of this, he became very guarded about the disease. My father also became very religious but once the congregation found out that he was infected, they asked him to leave the church. My father did find another church to attend that was much more understanding and supportive. My father was so desperate for a reprieve from God that he had my grandfather go to a religious place that swore their dirt was touched by God and could cure anyone’s aliments. When that didn’t work, he continued to be a guinea pig for new drug treatments. I believe that was what caused him to die so quickly. My father faced prejudices for being infected from his friends, family, work, strangers, and church. One day, after my father had finished eating, I took his tray out of the room and asked the nurses where to put it. They looked at each other and said they didn’t know what to do with it. There was a stack of other trays right there but they did not know if my father’s infection should affect putting his tray with the others. I was so angry!

My force field no longer exists. I know I am not untouchable! I lost my mother and my father to AIDS. I saw death as it crept slowly over my father’s face. I saw death laugh as my father, the man who was unbreakable, broke. I saw the fear, anger, and sadness in the eyes of my father because he knew death was all around him. I saw my dad’s dignity be taken from him because he had no control over his legs and bowels. Dignity stripped from him because he had no control over his life. I hope that at least one person will hear this story and know AIDS has a face. It is a terrible, haunting face. I hope that at least one person will now know that AIDS is coming for everyone and the only thing that can stop this devastation is the realization that no one is safe. Everyone needs to have the realization that it is not just their lives on the line but everyone’s lives.

As direct as I can be I proudly say I am a person driven by my past and a promise I made to myself as a child. The promise was made by a lonely terrified little girl whom by the age of twelve had experienced enough pain for three lifetimes. When most children were still playing make believe games I was learning the game of survival. By that point I had been physically, mentally, sexually, and emotionally abused more times than I could count. After asking the endless stream of why and how questions and having no answers. I realized I had to find a way to survive it all, and I did with a promise that other people would not plead for help only to find help too is an illusion. This promise was my saving grace. It saved my life literally and figuratively more times than I can could keep track of.