Rebounding from rejection

You have AIDS (Acquired Immune Deficiency Syndrome). You are going to die. Your life is over, the critics told her.

And at first, things did look dim. Her husband, who had given her the HIV (Human Immuno-deficiency Virus) died two years after his diagnosis — leaving her with two young children. She lost her job, all her family support and eventually her self-esteem as the disease ravaged her body.

But her will to survive was strong and 16 years later, international AIDS activist, Naisiadet Mason goes to many countries telling her story. She told All Woman that she was proud of herself for having done her Bachelor’s degree and more recently her Master’s, remarrying and having the gift of a full life.

“I completed my Master’s in public health last year. I was really proud of myself because when I got HIV/AIDS many people said, ‘your life is over. You are doomed to die and I proved people wrong’,” she said.

Mason discovered that she had HIV shortly after having her second child in her native land of Kenya (located next to Uganda in Eastern Africa).

“Sixteen years ago I was married for about two to three years. I had just had my second child when I was diagnosed with HIV. My husband (then) like many of the men there was having extramarital relationships,” the soft-spoken attractive 40 something woman said. “He was gone for the weekend — he would leave on Friday and come back on Sunday. It wasn’t like he had one other partner but many others. I knew that.”

Knowledge was one thing but her ability to take action was another. According to her, at the time she was not earning enough from her job as a bank clerk to care for her two children. Her mother had died while she was still young and the relationship with her dad was not particularly good so she did not have a strong enough support system to help her out of the situation.

“I just could not pick up and go. There were no support systems that would allow me to do that… so I became infected and as is often the case, the woman is blamed. For whatever reason, she is usually diagnosed first. Six months later he too was diagnosed and three years later he died

“Here I was with two young children and in-laws that stigmatised me and continued to do so because their son had died and I had not. As far as they were concerned I had brought shame on the family. My own father did not want anything to do with me so it was very difficult to deal with,” she said.

Her initial reaction to the news, she explained, had been one of anger.

“I had stayed home, looked after my children and did what I was supposed to do as a good wife. I did not feel that I deserved this,” she said. “In our culture, men get sex at their pleasure — not that women can’t get it but it’s usually when men want it they get it

“Even I knowing that he was having these partners could not negotiate for condom use because of violence. I would get mental abuse and sometimes beaten up. I would hear things like a man can’t have sex with a condom with his wife…”

Mason, who was in Jamaica for three days courtesy of the United States Embassy, shared her story with teenagers and other members of the community at a teen centre run by the Kingston Restoration Company in downtown Kingston on Friday. Prior to that she also met with public and private sector officials including the Private Sector Organisation of Jamaica (PSOJ), Church Women United and the National Aids Committee.

“When I look back, I see some of the things that put me at risk and some of the things that if the situation had been different I would have been able to avoid being infected.

“I was at the bank at the time. Four years later. I got an infection and my medical bills skyrocketed. The claim for the insurance was such that the bank noticed and they dug to find out what was happening. They found out that I had HIV and I was fired,” said Mason, who was a manager at the bank then.

This marked a particularly difficult period for her — a time that would really test her mettle.

“It was a real shock for me because I had no form of family support and the only way I had of earning a living was gone. I was relegated to becoming creative. I had a wooden shoak with corrugated iron made by a cousin of mine and I started selling milk, sugar and bread — all those basic things that people need at the corner of my house,” she remarked.

At this point she struggled with low self-esteem and was in danger of losing her dignity and self worth, she said. An onslaught of pneumonia further compounded the situation and brought her to death’s door.

“I thought this is it, I am going to die but then I said no I can’t die, who is going to look after my children? So with the help of an aunt, a doctor friend and a priest, they looked after me. Someone was with me 24 hours per day. They did what they could to encourage me and I eventually pulled through,” said Mason, who has worked as a consultant for the World Health Organisation (WHO) on the issue of accessing medication for persons in sub-Saharan Africa.

She was also a co-founder of the group Woman Fighting Aids in Kenya (WOFAK) which later served as her launching pad into advocacy.

“We formed a support group, Women Fighting Aids in Kenya, in 1990 and my support came from other women with the same condition. We would talk about the challenge we were encountering and here I began to get the courage to speak out about my status,” she said. “Then I got involved with Society of Women with Aids — a regional advocacy group for women and children.”

While doing all this, Mason related, her hope for long-term survival was that she could find some way to go to the United States so that she could access antiretroviral treatment. With her white blood cell count down to 94 (the normal count is about 1,200), she described herself as a living corpse at that time. A way was opened for her and she got through to go to the US, but she had to leave her children.

“But I had the resolve that nothing would get me down. When I started feeling better I decided to go back to school. Initially in 1997 I was not able to carry my children but about three months later they came up.

“I went to school and worked part time in Minnesota. I was the first person employed to that organisation that was HIV positive… I realised that I brought a unique quality and that I could reach out to people struggling with AIDS because I knew first-hand what they were going through,” she said.

According to Mason, one of the major problems facing people with AIDS is the stigma attached to the disease. And she urged Jamaicans to stop stigmatising persons with the disease but instead to accept them and treat them with love.

“Jamaica is making progress but more needs to be done. Journalists for example need to make sure that they have accurate information. Don’t use the word ‘victim’ to describe us but say People Living With AIDS (PLWA),” she said in a round-table discussion with journalists at the United States Embassy last Wednesday.

“It (victim) is a stigmatising term… which makes us feel like helpless people. Instead ask those with AIDS how they would like to be referred to,” she argued. She explained that stigmatisation helped to increase the stress levels of persons with HIV, which in turn could affect the progression of the disease. Stigma, she argued, was the main reason many persons with the virus would not go out and get treatment because they feared public reactions.

“HIV is not just a public health issue. You have to approach it from all angles… Many persons won’t come out with their status because of the stigma attached,” said Mason, who works with the US-based National Association for People with AIDS and has been an advocate for over 13 years.

Of the estimated 24,000 people infected with HIV/AIDS in Jamaica, only 6,088 at the end of December 2001 had been reported, which means that there are thousands of people who are HIV positive and do not know it and may be spreading the disease to others. Officials point out, too, that with Jamaica having just over three per cent of all new AIDS cases in the Caribbean each year, the island has the highest rate of infection in the region. If this is unchecked, Jamaica, over time, will catch up with the worst affected countries.

Mason also raised the issue that there needs to be more counselling for persons with AIDS so that they could better deal with issues such as loss of self-esteem, grief over their condition and so on.

“There needs to be more pre- and post-counselling and follow-up of persons with the disease. How you are told about the disease has a lot to do with how you react and cope later on… support systems are very important,” she said. There are 440,000 persons living with AIDS in the Caribbean — making it the region with the second highest rate of HIV/AIDS infection in the world after Sub-Saharan Africa.

“I have experienced stigma in Kenya and in the US. You have to use a variety of ways to get the anti-stigma message across. If someone stigmatises me, they are causing me stress that is so difficult to deal with. Can I reduce that? If I am constantly stressed and feel unwanted then it’s difficult for me to remain healthy because stress makes me ill,” she said.

She recounted a particularly painful case of stigma.

“A few years ago in the States I went to visit a dentist with my daughter to get my teeth cleaned and on the form that we had to fill out I put that I had AIDS. The dentist’s reaction was that they did not have the facilities to treat me.

“I asked her if they practised universal precautions and she said that they did. So I said okay but you have not heard the last of me as I am an AIDS activist. So she said why don’t you come back at three — we were there at about one- and then I will have the whole weekend to clean the walls and everything,”

“That totally floored me — my daughter was there and other people and I felt so rejected. Even if you are very strong you still feel it,” she said. According to Mason, she sued and was later compensated. She made the point that countries needed to have legislation in place to protect persons with AIDS and so on from discrimination.

On Friday while speaking with the teenagers, she also stressed the importance of using condoms and practising safer sex. She also attacked some of the myths associated with the disease.

“One major stigma is that only promiscuous or homosexual persons get AIDS but that is not true. I was not promiscuous or homosexual and I got it. So we have to move beyond the myths,” said Mason, who has been happily remarried to someone who is not HIV positive since 1999.

“I met him at the post office when I was mailing letters home to Kenya. We struck up a conversation and I gave him my number. He called me a few days later and things started from there.

“I tested the waters before telling him. I told him about my activism in the area so when I did confess that I had it, he said that he had suspected as much. We have a normal sexual relationship — its good and it’s a healthy thing. He said that he knows that even if we practise safer sex he can still get the virus but he is willing to take the risk because he loves me,” she said.

According to her, they had briefly explored the option of having children but have put it on hold. “I called doctors and looked at invitro fertilisation but it costs about $10,000 and eventually we did not do it.”

But she argued strongly that persons with the disease should not be refused the right to have children.

“There is treatment to prevent mother-child transmission so I see no reason why a person with HIV should not have a child. Just because you have the disease does not mean you lose your reproductive or human rights. The chances are about five per cent that the child will have it if you take the drugs,” she said. “There are even cases of women who have children with the virus who live a very normal and full life.” In her own case having to tell her children about her situation was also a major challenge.

“It was very difficult for me to tell my children although they had already suspected because people would whisper things to them. In fact when I just left them to go to the States, my dad told my nine and 10 year-old that your mom is dying of HIV and don’t go with her to the US as she will abandon you there,” she said.

“Disclosing it to them was very difficult. It came out when I was disciplining my son. He had been very sassy — he was about 11 or 12. I lectured him on his behaviour and in a bid to distract me, he asked if I had HIV. I told him yes but it made me feel very vulnerable.” Despite that though she said that her lifelong goal was to see her 17 year-old son and 15 year-old son graduate from school — hopefully soon.

Speaking about her situation, she said was like getting a weight off her shoulders and her message has not been lost on the Jamaican audience.

“I learnt that it is important to keep one partner,” said 12 year-old seventh grader, Eric Nelson speaking to All Woman after Mason spoke at the Teen Centre on Friday.

“I learnt to abstain and to say no if anybody ask me for sex. If you have to do, it use a condom,” said 14 year-old Tanya Kelly. This was supported by 13 year-old Christopher Mackay, who said that how important it was to always use a condom.

Twelve-year-old Daniel Downs was proud of the fact that he got to hug her. “I was not afraid — some people may be afraid to do it because she has AIDS but I was not. I know that you can’t catch it like that.”

This, according to Mason, is part of her reason for living — to be able to empower people about AIDS.

“I want my life story to motivate others,” she said.