In late 2009 Marilyn realized that she was losing weight rapidly and her worst fear was confirmed when she tested positive for HIV.
Like many others, she thought that this was her death warrant, so the mother of seven returned home and for a few days she waited to die. But later she visited the Campbellville Health Centre where her status was reconfirmed and she was told that her CD4 count was so low that if she did not immediately go on treatment she would die.
That was her wake-up call, and she told the Sunday Stabroek in a recent interview that even though she felt her status meant death, she did not want to die. However, things took a turn for the worse when she commenced treatment, as she recalled that she got progressively sicker and vomited all the time.
“But one day I went to Georgetown hospital and I hear a doctor telling a patient that they have to eat before taking the medication, and when I went home I make sure I eat me bellyful, then take the medication and I did not vomit. From that day I start to eat and eat because I said to the virus ‘I not waiting for you to kill me,’” she related.
So serious was she about fighting the infection that she sent her live-in partner packing, as he refused to be tested and also refused to wear a condom during sexual intercourse, but still demanded intimacy.
It is that positive attitude Marilyn took to the Sparkling Sunshine HIV support group for HIV positive persons who access treatment at the Campbellville Health Centre. The two times past president of the group said it mainly helps women, most of whom are single mothers, and they all work towards supporting each other.
Today she has a small chicken business and she also maintains her small kitchen garden which not only provides supplies for her but also for many of her neighbours, who she said are aware of her status as she made no secret of it.
“In my community everybody that need some information on HIV they come to me, if they need a condom they come to me…”
Joyce Henry has been a member of the group from its inception in 2007, and even though she only started treatment last year she told this newspaper that she has been living with HIV for over 15 years and it is miracle that she is still alive. She said she receives tremendous support from the group and she looks forward to the monthly meetings they have, as in addition to receiving support she also supports persons who might be going through a rough patch. Initially the group had over 100 members but they have now been reduced to 30, and according to Henry many of the women dropped out because of depression and domestic problems.
“I would encourage women to come back because they can get help here; if they don’t open up they can’t get help… but I know it is hard for some people to open up,” she said.
She sees the members of the group as her family since she gets most of her support from them.
‘Catch a fish’
Members of the Sparkling Sunshine group are supported by their social worker Nicole Cole, who said the group main’s aim is to empower the members to “catch a fish [and] instead of sitting around and waiting for aid, help yourself.” Cole noted that stigma and discrimination are still a great hindrance to the HIV fight, and it is difficult for people to “open up” and when they do as a social worker she has “to take them in my bosom and protect them.”
“I try to get them not to dwell on it because depression is a major problem,” she stressed.
Cole said Marilyn was like ray of sunshine to the group when she joined, and after she was elected president she was never one to sit around and do nothing. She started approaching agencies, one of which was Red Cross Society, to conduct skills training with some members. The National Aids Programme Secretariat (NAPS) which supports all HIV groups, also facilitated skills training with members, and some were taught jewellery making and agriculture in an effort to empower themselves.
Marilyn also attended a training programme in Geneva for women living with HIV and AIDS and she returned bursting with new ideas. Even though an unfortunate incident led to her being removed as president of the group, she has not given up and she plans to contest for the presidency at the next election held by the group. She was sponsored to attend the programme by the Young Women’s Christian Association (YWCA).
Cole said it is important to empower the members because many of them become dependent on the public assistance that is given to them from time to time. She said in the past the government gave public assistance to persons living with HIV and AIDS, but this has stopped and she has seen the lives of many deteriorate because they were not empowered enough to become self sufficient.
“You have some people who shut themselves in because sometimes when they come out people in the area would curse them out, so they shut themselves in and for some of them they don’t get family support,” Cole said, giving the example of a 25-year-old woman who eventually died after she stopped receiving public assistance.
Joyce, a former member of the Guyana National Service recalled that when she tested positive she was forced to stop working; back then she worked with the Guyana Defence Force and the Guyana Police Force.
“To maintain my children I had to work with people, I had to scrub steps, I had to wash for people and some of them didn’t even want to pay. I remember a woman mek I wash three tub a clothes and when I done she give me three hundred dollars,” she said with a sad smile.
But like Marilyn she is not a woman who has given up on life and even though her husband, whom she described as being “very wild,” has since passed away Joyce said she plans to continue to live her life and not just exist as some positive persons do.
With a background in nursing Joyce said she is sometimes hired by persons to provide round the clock treatment for their relatives, some of whom are hospitalized. She said initially she used to lock herself in the home during the day and did her housework at night, but with the empowerment she has received she is no longer bothered if someone knows her status, and she freely talks about it and uses herself as a living example that persons can live meaningful lives after becoming infected.
‘Play and art therapy’
Joining the group in 2007 Cole said she introduced play therapy and for the last three years they have gone out twice for outdoor activities.
“Introducing play therapy has worked; it is a non-medicinal technique that helps them [the patients]…many of them suffer from depression but the doctors would tell you that their bodies can’t take any more medication,” Cole said.
Even though it is just twice a year, Cole said she has seen it do wonders for the group members, and with that success Cole and Marilyn are now working to get the members involved in art therapy, which is an idea they have been working on for years and may soon become a reality with a recent presentation.
Only last week the Church of Jesus Christ of the Latter Day Saints supplied all the material for the programme, which would be undertaken through the Burrowes School of Art. This was made possible through Marilyn, who is the President of the Women’s Relief Group of the church.
Apart from the supplies, which include three heavy-duty machines, the church also donated clothes and hygiene kits along with kits for newborn babies.
Cole explained that the art therapy would have a “two pronged approach” as it is expected to ‘treat’ members but also teach skills, since they would be taught clothing and textiles, painting and drawing, and ceramics.
The Red Cross Society has agreed to provide the space for the training and also to pay one of three tutors’ fees which would amount to $144,000 for the three month course.
So all that is needed for the programme to become a reality is $288,000 to pay the two other tutors. Cole hopes that following the training and the participants have been certified they can go on to use the training to earn a living.
As a social worker Cole does not sit in her office and just counsel her clients, but beats the streets in her quest to improve the lives of the infected and the affected. It is this attitude that may have seen five persons from that group receiving house lots when the house lot lottery was held some years back by the government in partnership with other organizations.
Food for the Poor built the houses and Habitat for Humanity will provide sanitation needs.
Only five person receive house lots per year, and in 2009 out of that number four persons from the Campbellville Health Centre received lots and the previous year one persons received.
“This social worker didn’t leave the patients to struggle through the forms; I sat down and helped them to fill it and then I told them to pray,” she said.
Cole is calling for the lottery to be re-started as she feels that it has really helped poor single parent mothers.
Sparkling Sunshine group, which was formed by the health care team of 2006 which included a physician from Nigeria, also won the first prize in the first inter-group quiz that was held by the West Demerara Hospital. The theme songs of the group are Cheryln Maloney’s ‘Don’t give up,’ Yolanda Adam’s Keep the dream alive,’ and Bob Marley’s ‘Three little birds.’
