Coping With AIDS/HIV In Their Lives

Today is World AIDS day. I have heard or read their stories a lot. So I went to search for some stories from the real people who deal with AIDS/HIV in their lives, to create awareness, and to understand how they feel, what they gone through - that we are no better than them. We are human. We are equal. Here's Lindsay's story:

My name is Lindsay and I'm 19 years old from western New York. I came from a loving family- mother, father, 2 sisters and a dog.My father was a hardworking, heavy set man that smoked cigars and listened to country music and loved his kids. In 1994, my father suddenly fell ill. While at work one day he lost his balance on a ladder and fell. Being, the stubborn, "manly-man" that he prided himself upon, he hesitated to go to the doctor right away. Over the next couple days, he became sicker. It seemed like he had the flu. My mother, getting on his case, scheduled an appointment for him to go to the doctor. Initially, the doctor said he had the pneumonia, drink fluids and rest. Although his flu-like symptoms did go away over the next week or so, he didn't feel any better and began losing a drastic amount of weight. His doctor then ran every blood test known to man. When the results came back, that perfect family shattered. My father was HIV positive. My mother shunned him and began working nights. I suppose that was her way of coping. My father hit one of the lowest points of his life, even becoming suicidal. Ultimately, their 14 year marriage ended in divorce and a bitter custody battle.

He left Easter Sunday. Having 3 young children, at that point we didn't fully understand the situation at hand. My father got his own place, my older sister lived with him and my younger sister and I stayed with my mother, visiting him on weekends and whenever we had time off from school. He started medication, to build his immune system and finally began to smile again. Living with HIV/AIDS is possible. My father proved that. Although he was no longer able to work due to medication and other things. He still did the things he enjoyed. He restored a 1972 tow truck, started up a little business towing cars. He spent time with his kids, fishing, camping, shopping (until then, he hated shopping), attended school events, spent time at his friends garage helping them repair cars, drank plenty of Mountain Dew and still smoked cigars. He was very aware of his mortality but vowed to live life every day like it was his last and make the most of it. And he did just that. He attended meetings/support groups where he was able to talk about life and what it throws at you with people that really understood first hand how he felt. My father, who initially was ashamed of having AIDS, became accepting. He never hid the fact that he did have AIDS. He was always more than willing to discuss it. And to his surprise, most didn't turn their backs. They wanted to know. Generally, people thirst for knowledge. It can save your life.

Even though his spirit couldn't be broken, his health was still an issue. My father got bronchitis. His doctor immediately put him on antibiotics and his symptoms were minimal until he started developing a horrible rash. It was a Friday night, my sisters and I were at his house watching movies, eating popcorn, having fun. He noticed that he was breaking out with a rash. So we start talking about what hes been using; laundry detergent, bar soap, moisturizers etc. Nothing was out of the norm. Sunday morning, he woke up to go to the bathroom in terrible pain. (which was not unusual. He suffered for rheumatoid arthritis also and by morning his pain medication had wore off) He got up, took a couple steps and then looked behind him. As gruesome as this sounds. The bottoms of his feet had basically sloughed off of his body and onto the carpet. Not knowing what else to do, we called 911 while he wrapped his raw feet up. He was brought to the emergency department and treated as a burn patient. Over the next couple days, all his skin had basically fallen off of his body. He didn't look human anymore. Doctors diagnosed him with a severe case of Stevens-Johnson Syndrome, better known as TENS. Ifs a severe allergic reaction, in his case to the antibiotic that he was on. Doctors decided to put him in an induced coma because the pain was intolerable and it would reduce movement until his skin regenerated and healed. My father was a fighter. Over the next month, his skin healed. He regained consciousness. He was then moved to rehabilitation facility. A miracle, some may say. He recovered. Learned how to walk again, talk again- basically learned entirely how to function again in hopes of living a normal life.

Again he was back at it, working on cars, smoking his cigars and back being the best father his body could permit him to be. The only complaint I ever heard from him was "My skins to damn soft. This is not a man's skin." By 2001, Stevens-Johnsons Syndrome was a meir memory, just another obstacle he had overcome. Life became normal again. My father continued taking medications, even volunteering to be a guinea pig and trying new medications not knowing what the effects could be.

I talked to my father on a Friday night. He was telling me about some car he was working on. I don't know much about cars to this day, so I just pretended like I could relate. Saturday at about noon, I got a call from my sister saying that he was back in the hospital and to rush there because it wasn't looking good. Of course I got there going 90mph the whole way. By the time I got there, my father had fallen into a coma. What felt like minutes later, my family and I had a meeting with the doctor. He had pronounced my father brain dead. That was devastating. He gave us the option of taking him off life support or keeping him on it with virtually no chance of recovery. We chose to take him off life support and let him go to God. Most of my family decided to stay and be with him for his last moments. I chose to leave. I refused to see my father at his weakest. He was a strong man- a fighter. And the last moments of my father that I recall are ones of him going against the grain and living his life the way he wanted to live it. On March 30th, 2003 my father passed away.

Although he is not here with me anymore. I carry him around with me. After all, I am my father's child. But I think the biggest thing Ive learned from my life and my father is to never give up hope- and to keep an open mind. Love others regardless and although they may not do the same, you will feel better about yourself. And lastly, be proud of yourself. There is not a type of person that can or cannot get AIDS. Anyone can. And having AIDS is not the end either. It may change the way you live your life, but it will not change who you are.

In loving memory of David A. Kuhn, a loving father.

Source: http://www.avert.org/friendrelative.htm

"Because it is about sex, in my country they then automatically think you got it because you have been loose…you are not anything better than a prostitute… they don’t believe you didn’t get it any other way.” - African woman in the UK

"Even a married woman who has been infected by her husband will be accused by her in-laws… In such a male-dominated society no-one ever accepts that the man is actually the one who did something wrong… It is even harder on women since it is seen as a fair result of their sexual misbehaviour."- HIV-positive woman, Lebanon

"I am afraid of giving my disease to my family members—especially my youngest brother who is so small. It would be so pitiful if he got the disease. I am aware that I have the disease so I do not touch him—I talk with him only. I don’t hold him in my arms now."- Woman in Vietnam

"At first relations with the local school were wonderful and Michael thrived there. Only the head teacher and Michael's personal class assistant knew of his illness… Then someone broke the confidentiality and told a parent that Michael had AIDS. That parent, of course, told all the others. This caused such panic and hostility that we were forced to move out of the area. Michael was no longer welcome at the school. Other children were not allowed to play with him - instead they jeered and taunted him cruelly. One day a local mother started screaming at us to keep him away from her children and shouting that he should have been put down at birth…. Ignorance about HIV means that people are frightened. And frightened people do not behave rationally. We could well be driven out of our home yet again.”- British woman describing the experience of her foster son in a British school

Source: http://www.avert.org/aidsstigma.htm

It's just some of the voices expressed by those outside our country. What about the people
around in Malaysia? Do we fare better than them?