Patricia Watson, Senior Staff Reporter
HIV CAUSES excruciating pain, not only for those infected, but also for those family members who have to care for them.
People living with HIV demand physical care and emotional support. Many families who would normally be able to get by with a little, oftentimes find themselves struggling to provide even basic nutrition for their loved ones infected by the deadly virus. In Jamaica, HIV is known to have caused loss and cuts into income and time available to families to care for themselves.
But apart from that, the stigma associated with HIV/AIDS in Jamaica, makes it extremely difficult for persons to seek support even from family. Many carry around the secret of the 'strange' illness of loved ones alone, wishing they had someone to talk to at nights; wishing that there was someone to hug them and reassure them. The fear that they will be ostracised and the HIV positive individual treated unkindly, make some bear the psychological burden alone.
Discrimination
It is not an easy decision to stick by a loved one, considering the stigma and discrimination associated with HIV. But many Jamaicans, out of love, do stay by family members and friends infected by HIV. Today we look at one such person.
Driven by a fierce love, that only a mother is capable of, Winsome Wrightkept the fact that her son was HIV positive a secret. A secret, she decided to let go only at the death of her son, when no one could hurt him.
"Johnnywas my first child. I had him at age 20," 56-year-old Mrs. Wright said.
"From about three years old, I could always send him with a note to the shop he was the sort of person who took charge. He was honest and he helped around the house and took care of his smaller brothers. He was washing his own clothes from age 13."
Johnny, according Mrs. Wright, was always a bright child and did extremely well in school, especially in accounts, Spanish and English.
After school, Johnny worked for a while at a bank, then moved on to another job in accounting.
"He was not only a good accountant at work, but at home as well. I was expecting much from him," Mrs. Wright explained softly.
Johnny lived at home until age 19. Mrs. Wright noted that Johnny was a Christian, but "dropped back due to peer pressure".
She said she can recall the day she realised something was wrong with her son, but was unable to fathom what it was. On one occasion, she explained he got so ill that he had to be admitted to hospital. When they released him, he was told to do a blood test which he did.
"All this time, I didn't pry into it. I felt if it was serious, he would tell me what was wrong, but he never said anything.
"I got a phone call from (the hospital) that he should contact the doctor, I gave him the message, but he didn't contact him. Shortly afterwards, this lady came in a car asking for him and that she was anxious to talk to him. When I called him and told him, all he said was 'life is what it is, if it is anything terminal, I will have to live with it'."
She said Johnny went to see the lady and shortly after he got his own apartment.
"He was there and I remember I used to visit him after church and sometimes I cooked breakfast for him. I went overseas for a while and when I came back, he told me he had a bad time. I didn't like how he was looking he was so thin I asked him if he was taking his iron and vitamins and he said he was.
"Every morning when he came by the house and I was in the kitchen preparing breakfast, he would be singing Christian songs. One morning when he was there, I heard him call me, 'Mama, Mama,' and when I rushed in, he was lying on the floor. I took him up...
"One Sunday in particular, the church had a convention, so I sent my second to last son with breakfast to him at the apartment. When he came back, he said Johnny could barely scramble to open the door. When I went there, he said from Friday, he was there and could hardly help himself."
Persons living with HIV, sometimes suffer incontinence and if significantly weakened, may not even be able to clean themselves. Ministry of Health data shows that there are an estimated 24,000 people living with HIV in Jamaica.
"When I saw the condition he was in, I sat down with him and invited him to pray and have faith that God would help him. I stayed with him for a while and he begged me to spend the night."
She was unable to do this though as she had the other children at home to care for.
Gotten worse
"The next morning I make some porridge and took it to him, when I got there I saw one of his friend and saw he had gotten worse. He was having diarrhoea. The next day, he said, 'Mama, I have to talk to you.' He said 'Mama, you mustn't fret, promise me you won't fret'. I told him to go ahead and tell me and that was when he told me he had AIDS. I listened to him and while he talked, I realised why he didn't tell me what was wrong with him he was concerned more about me than himself.
"I decided then that I would not desert him. I decided that I wouldn't even tell my husband what was wrong and when things took a turn for the worse and he had to stay with me, I still didn't tell a soul. One thing I know, I didn't want anyone to know because he was suffering enough and you just don't know how people would react. Even the doctor told me 'mother you mustn't tell anyone about your son'."
It was the doctor, she said who made arrangements for Johnny to go to the hospital in his advanced stage.
"At the hospital, people peeped at him and chatted about him and it made him depressed. He made up his mind that he wanted to go home. I had to be back and forth working with him and during the time, he recommitted himself. One Wednesday evening, on my way to Bible study, I stopped. I realised his desire was to go and stayed with him for awhile. I read the 23rd Psalm for him and asked the Lord to wash him. He went to sleep and I heard a big sigh and knew the end came."
Johnny was only 28 years old when he died November, 1993. He is among the average 22 per cent of persons in the age group 20 - 29 years old that die as a result of AIDS. Like many in this age group, they represent the country's most productive workforce. They are in many cases also among the brightest and as the cases of HIV in this age group increase, Jamaica becomes poorer.
But apart from that, women like Mrs. Wright are forced to quit their jobs to care for their sons and daughters. Many do so with little or no support from family and friends, because they have to hide the disease for fear of what people may do. This is the reality in Jamaica.
It was at Johnny's death that Mrs. Wright took the difficult decision to tell the rest of her family of the secret she carried for months.
"During the time, friends brought him grocery. I don't know what would have happened after November, because he got his last cheque that month. I was not working and I am not from a rich family and I would not want to go to anyone with this sort of thing. People used to pass all sorts of remarks and it really pushed me down."
About a year after Johnny's death, Mrs. Wright said she was led to offer her services to the Jamaica AIDS Support (JAS) to care for other victims of HIV. She described her time there as very fulfilling.
Stressful
"It is a lot of mixed feelings it was taxing, stressful, but when I look back on it I don't regret it. It was not for money, because if that was it, I would have left."
Mrs. Wright explained that one of her worst experiences was at the Kingston Public Hospital, where she took one of the clients for treatment.
"They let the whole ward know that he had HIV. We had to wait until they were ready and the way they looked at him, tears just rolled down ... the level of confidentiality they are supposed to have they don't have it. It is as if they haven't suffered enough."
She said many of those living with HIV only need care and food and they would bounce back to their normal self. Her hope is that Jamaicans may start to respect and care for people with HIV, so families will not have to hide and suffer alone.
"I gained a lot from them. In life they say it is only good things that you gain from, but you can also gain from the bad. It is time Jamaicans come off whatever they are on and treat them well. We are all humans I never cared for any dogs at the hospice they were all lovely people. I think from the head of the stream to the tributary need to be more compassionate."
