AIDS and a mother's anguish

by Judy Fitzpatrick
Stabroek News
September 17, 2000

"Raggamuffin don't be silly... AIDS ah go round and we doan wan ketch it..." This Buju Banton hit rings in my head whenever I hear the word AIDS. But for Joan Wiles Alleyne, it is not as simple as a song. More important things linger in her head when she has thoughts of her only and now dead son, Phillip. Phillip Gordon Wiles died of an AIDS-related illness on Friday, September 3, 2000 at the Georgetown Public Hospital.

"Did I raise him right? Was it something I said, something I did? Could I have prevented it? Was it my fault?" Alleyne spent many sleepless nights questioning herself, tracing back, trying to figure it out. "Did I not teach him the right things? Bring him up the right way?" Her soul searching revealed the opposite-pure love, support and care.

Alleyne is just one of hundreds of parents, who carry the heavy burden of blame on their shoulders when their children are afflicted with the virus that causes AIDS.

Wiles was in a way lucky though. He was one of the few people living with HIV who received support from their family. His mother and stepfather Ronald Alleyne spared neither themselves nor their pockets to ensure that he lived a healthy life. But depression over his condition led him to a life of crime, drugs and deception. His mother watched it all-in pain. How on earth did she cope, when a piece of her very heart deteriorated right in front of her eyes?

In her words: "When I saw HIV positive on the paper. I couldn't believe it. I was scared, not because he had AIDS but because he smoked-marijuana, cocaine-everything and I knew he would run for a smoke. I knew it would kill him faster. I can't remember what was going through my mind when I found out. I probably ran all over the house screaming. I remember thinking the words of the [then] health minister [Gail Teixeira] when she said 'I never complete a talk before saying something about AIDS'. She said people afflicted lived a horrible life and died a lonely death. I tried to figure in my mind what she meant. What could be so horrible? Why would it be lonely? I once saw a man who died on the road. People said his family put him out because he had AIDS. That sort of answered the question.

"Phillip went out the night he found out that he was positive, although I begged him not to. I thought he was going to commit suicide, but I knew he would smoke. I didn't sleep all night and he didn't come home till next morning.

"I don't take defeat that easy, the very next day I picked up the telephone directory and called everyone I knew, I wanted to find out everything about AIDS. I searched the book stores and found the book, When Someone You Love Has AIDS. It was very edifying. I read it every living day.

"Phillip joined the fight against AIDS. He became a member of Lifeline Counselling Services. I had to get counselling myself to deal with it. I also joined Lifeline and took counselling privately. Salvation Army had a programme for parents which helped me a lot along with support from my husband.

"In 1997 I took him to Salvation Army Drug Rehabilitation Centre. He lived in for three months and was probably clean.

"I supported him from the onset. He got all the medication, builders, weight gainers, everything but his smoking got worse. After a while things started to disappear from the house and I realised he was smoking again. A fancy shoes would go missing, a this a that. He would leave home and not return for days. One day I went to the East Coast, he didn't want to come. When I returned many things were missing. He went into the storeroom and took away some things which cost a lot of money. I made a report at the Kitty Police Station. Someone probably told him I made the report and he gave himself up. He spent a night in the lock-ups. I really didn't want this, but I had to do something drastic. When he came out I threatened him with the ultimatum that he either go for rehab or I would press charges.

"He chose rehabilitation at Salvation Army. He didn't stay long. He broke the rules. He told the people he was going for a job and he was really going to smoke.

"Another time he took away a friend's bicycle. The boy found Phillip and took him to the station. He was jailed for six months. When I visited him in prison he said he didn't expect me to come. I told him to be careful and I took vitamins for him. In a way I felt secure when he was in prison because I knew he couldn't smoke. You have to get money to buy it and I wasn't leaving him any money. "One weekend I had a funny feeling and I got a call that Phillip was in the hospital. I rushed down and saw him padlocked to the bed. I held on to him and asked him why he didn't call and tell me. He said 'I thought you finish with me Ma'. But how could I finish with him... This was some time in June. I visited him every living day in the hospital. Sometimes I spent all day. I did everything for him, cleaned him, shaved him, fed him, everything and he was coming up.

"Sometimes I see relatives of AIDS victims standing far away from their bed and I would go over and tell them that they can't get it by going closer, and touching them. I never had these fears.

Recently I went abroad for three weeks. When I returned he wasn't talking much, he withdrew.

"One time I asked him what was wrong and he told me that he didn't want to hurt the family anymore. I think those were his second to last words, I couldn't figure out his last words.

"On Sunday morning [September 3] I made the six o'clock visit. His feet were cold and his hands looked white and funny. I wanted to spend the entire day with him and left to go home for some coffee and to get the priest. When I returned three minutes after ten he had already died a few minutes before. He hadn't any real sickness, like diarrhoea or so, he just lost a lot of weight.

"Many times when I can't take the pain anymore, I lock up myself in the washroom and get a good fifteen minutes cry. It helps. I don't regret anything. I was always supportive of him and helped him all the way. My advice, if your child has AIDS give them all the support you can and try to learn as much about it as you can".

HIV, the virus that causes AIDS, creates a condition that weakens the body's immune system, making it susceptible to infections. The disarming of the immune system varies from person to person. There is no cure for HIV/AIDS, but numerous medications are available for people who contract the virus, who should eat healthily. Death is inevitable when it invades your system.

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