IT took 24 years of living with the HIV virus for 54-year-old Surinamese national Ethel Pengel to speak freely about the disease which changed her life forever.

So ‘free’ is she that Pengel says in the 24 years since she became infected with the HIV virus she has never taken any antiretroviral treatment because her CD cell count has never fallen below 1,600.

“I have learnt to live with HIV because I am free inside. I forgive my partner and I was not afraid to tell my mother because I have learnt that with honesty all doors are open for me,” she told the Sunday Observer.

As a wife and mother of two in the peak of her nursing career, contracting HIV was the farthest thing from her mind. So, in 1982 when her partner suddenly became ill, fell in a coma and died two weeks later, Pengel was all for an autopsy to be done to determine the cause of his death.

The diagnosis was shocking. He had died from AIDS.

Pengel, who was living in Holland at the time, said she journeyed to a far away city to take the test, which would confirm that she was positive.

On the journey, all she could think of was what would happen to her two children – ages 12 and 14 at the time – if she was tested positive.

Her worst nightmare was soon confirmed upon her return weeks later to get her test results. And, not having received any counselling before the test was done, she had no idea what to expect.

In fact, she recalled that the experience with the nurse was very traumatic.

“The nurse came up to me and she said, ‘are you a hooker or a drug addict because a lot of HIV positive black women are’,” Pengel said.

As if that was not hard enough, Pengel had to go home to tell her children of her status, and also face the people in her community, where the stigma and discrimination started almost immediately.

Pengel said it was also extremely hard for the children, who were not spared what was meted out to her. Her son, unable at the time to cope with the situation, confided in his friend’s mother who questioned him after noticing that he was not being himself.

But that was a mistake, as the woman in whom he had confided started spreading it among the neighbours.

“When I walked on the street they spat at me,” Pengel said. She said that when she went to have coffee by a friend, the cup she drank from was thrown out.

“When I would sit and hold on to the arms of a chair, she would take Clorox and wipe it down,” she recalled.

Pengel’s daughter, who used to baby-sit to make extra money, was suddenly told her services were no longer required.

Unable to deal with the discrimination anymore, Pengel said she was forced to move to another city.

But after suffering in silence for awhile, Pengel knew she had to learn more about the disease.

After some amount of research, she located a network of women living with the disease. But upon her arrival she was surprised to discover that she was the only black person in attendance.

“I started reaching out to other HIV positive black women and they started coming to be a part of the group,” she said.

That was the start of her uphill battle to rise above the disease.

Never again would she wallow in her pain, as she immersed herself in voluntary work to help people touched by the disease.

Before long, she was invited to do an interview with a local newspaper in Holland. That was to be the start of her new life.

“I went on television and people started recognising me. And so, when I walked on the street people would give me a hug,” she said.

Shortly after this experience, five women from her network wrote a book about their life story, which was later turned into a documentary.

But her worries were far from over as Pengel had yet to disclose to her mother that she was living with HIV. She was encouraged by her siblings not to tell their mother as this would surely kill her. But Pengel said she knew that in order to feel free she had to do one of the most difficult things she has ever had to do – tell her mother about her status. Years later, the opportunity finally presented itself when her mother paid a visit to Holland.

“When she came, we were watching television and a programme about HIV came on and she started to tell me about a girl I knew in Suriname who had died of AIDS,” Pengel said.

I just knew it was the right opportunity to tell her. So I told her, and all she said was I should pray because only God alone know the way I must walk,” Pengel recalled.

But the reaction was not what she had anticipated, and Pengel was left feeling very disappointed.

“I thought she was going to give me a big hug and say it will be okay, but it never happened,” she said.

But as ironic as it seems, Pengel said she took comfort in the fact that her mother had never hugged her even as a child.

In 1989, tragedy struck in her family when one of her brothers, who was living in Suriname at the time, died of AIDS.

Pengel, who had returned to school to study as a social worker, decided she must return to the land of her birth to help the people in her country.

On her return, the first thing she did was to have her story and picture published in the newspaper.

“The response was better than expected because people started calling me up to say they were glad I spoke about it because they were in a similar position and wanted to kill themselves.

In Suriname, there are an estimated 15,000 people living with the disease and antiretroviral medication is made free through Global Fund.

But while for the most part the response was good, there were still instances in which she faced discrimination from people who were her friends. Pengel recalled one instance when she was invited to dinner with a friend she had attended nursing school with.

“She had a good table setting on the patio and when I went out there I saw my place was set with plastic utensils. She started to put food in the plastic things and I jump up to leave,” she recalled.

“I said to her as a nurse you should know better.”

In Suriname, she said stigma and discrimination are still very much present as in the case of a HIV positive woman who cannot go into the fridge in her home because her mother won’t allow her.

“She has to be the last one to take a shower because she has to scrub the bath when she is done,” Pengel said.

In addition, she said a lot of families do not want to claim the bodies of their loved ones when they die from AIDS.

“When people die of AIDS they even have to pay more money at the morgues because they say they have to use more things on the body to prevent it from smelling quicker,” she explained.

But HIV has not stopped her one bit, as Pengel said she is living life to the fullest. In fact, she told the Sunday Observer that for the last 12 years she has had a partner who is HIV negative.

She said a lot of people do not believe that she is HIV positive.

“I mobilise people to come out and disclose their status because I know people living for eight years with their partners and they don’t know they are positive,” she said.

Pengel spends a lot of her time assisting with the making of quilts in memory of people who have died from the disease.

“I have been in Barcelona when more than 12 football fields were covered with quilts, but I am glad that people are no longer dying as much as they used to,” she said.