Positive about life!

Every cloud has a silver lining and Lilian Kuffase Dindi is living proof of this. 16 years after she was diagnosed with HIV, Dindi says her status has taught her to stand up for herself and others. The businesswoman, church elder, HIV/Aids activist, mother, and grandmother tells Albert Sharra all about disclosing her status at a time when people had little understanding of the virus,  her advocacy work and making time for everything in her busy schedule.

 

Lilian is…

An HIV/Aids activist, businesswoman, church elder, mother, mother-in-law and grandmother born on 8th October 1958 at Embangweni Hospital in Mzimba. I am a resident of Mzuzu City and I am a widow. I lost my husband to HIV/Aids and I have been living positively since 1995. I have five children: four boys and one girl. I have one son-in-law, two daughter-in-laws, four grandchildren and three adopted orphans. My main source of income is my business. I was involved in transportation, accommodation, farming, running maize mills and departmental stores. My husband and I started these businesses together. When he passed on, these were taken away from me and family wrangles ensued. I sold off an estate that I owned and then set up my own businesses. I quit my job as bank manager’s secretary at National Bank of Malawi (NBM) to concentrate on this. I have done everything from buying apparel in South Africa and selling it in Malawi to running taxis in Mzuzu.

 

When the counsellor told me my test results were positive, I was shocked.

But I quickly accepted my status because I knew my husband had married a lot of other women, so the news did not come as much of a surprise. He married and left 14 women before he settled down with me. My status only served to strengthen me and help me grow as a person.

 

I decided to come out in the open after I observed people being reckless with their lives.

I was doing business in Rumphi at the time and observed how businessmen engaged in behaviour that put them at high risk of contracting the virus. They had no idea how tough being HIV positive was and what challenges it presented. So, I thought of saving such people by declaring my status. I thought speaking to them would make an impact and it did! Right now, I speak to the whole nation about my status and how we can avoid new infection. I speak on how HIV positive people can live long healthy lives and present myself as a living testimony. I speak at churches, workplaces, functions, on television, radio and whatever forums I can get. This year, I spoke at Ekwendeni’s World Aids Day event. My advocacy work has taken me across the continent and the world; I have been to Canada, United States, Kenya, Botswana, South Africa, Namibia on the same.

 

Having a positive diagnosis in 1995 was extremely challenging.

I think the fact that I disclosed my status when discrimination and stigma against people living with the virus was high (in 1996) made life extremely difficult for me. People had their opinions of me and as, expected, said a lot of things. I knew all this but tried to ignore them and live my life. I knew who I was deep down and that gave me the courage to make it from one day to the next. I got very scared when I fell seriously ill for the first time. I had not yet started taking ARVs because they were expensive and I could not afford them. My son took me to Mzuzu Central Hospital where I was counselled and put on treatment. I still get scared when I am alone because I think deeply about my life and my health. As a result, I always try to have someone to talk to. Being alone and HIV positive is torturous.

 

Abstinence is my key to survival.

I have self-control and I can tell you now that since the death of my husband, I have never had sexual intercourse with any man. Even though there is nothing wrong with practising safer-safe, I have personally decided to opt for total abstinence. I love my life and I want to live long on this earth. I make sure I take my medication as prescribed by doctors. Each time I fall sick, I rush to the hospital for medication. Above all, I take care of myself and ensure I am eating the right foods to keep my body healthy.

 

16 years after I lost my husband, I am uncertain about remarrying.

I would want to remarry but the problem is that most men today are not responsible. I want a strong man who fears God, is respectful and has financial muscle because I have a huge family. I think I would value a partner’s company and love more than anything else because I cannot tolerate being alone.

 

Single-handedly taking care of such a large family is tough, but I have the courage to do so.

Life without a husband is tough but I am doing everything I can to keep my family alive and happy. I do not always reach the targets, but somehow we survive. With advocacy work, business and my family, I have a lot on my plate but I am used to being busy and never get too tired. The secret, I have learnt, is dividing my time so I can fit everything into my schedule.

 

My husband died of an Aids related illness in my arms and this has taught me a lot.

It was extremely hard for me but I grew stronger. His death and my condition unearthed my potential for doing charity and voluntary work. After quitting my job, I took up voluntary work. I focused on organisations and people that dealt with HIV and Aids and reached out to both the infected and uninfected. I am a founding member and board member of Coalition of Women Living with HIV/Aids (Cowlha). I am a board member of Malawi Network of Religious Leaders Infected and Affected by HIV and Aids (Manerella+) and Citi Hope Malawi (CHI-MW). I am board chairperson of Livingstonia Synod Aids Programme (Lisap). I also serve as regional administrative secretary of the Women’s Forum Northern Region (WFNR). I do everything I can to reach out to people on matters pertaining to HIV and Aids.

 

Living with the virus has changed me.

I now know how to stand up for myself and for others to fight stigma and discrimination. I am now interested in and advocate for human rights and gender equality. As a Christian, church elder and member of the Women’s Guild, I have utter faith in God. I can safely say that I have drawn a lot of people closer to God.

 

The challenges are still thrown at me thick and fast.

I do not have enough capital to take my business to the big league but get by through hard work. As a volunteer, I have limited resources, which means I cannot reach out to as many people as I would like. Oftentimes I have survived on financial support from organisations such as Action Aid, Lisap and Malawi Health and Equity Network (Mehn) to reach out to communities. Stigmas against people living with the virus refuses to die and this is a setback for me.

 

This year’s World Aids Day theme (Getting to zero) is exciting, but I have my reservations.

The resolve to get to zero new infections, zero HIV/Aids related deaths and zero discrimination is noble but I think it’s not easy considering the fact that it is difficult to control people’s lifestyles. I do however believe that if more people come to the open about their status and become involved in the HIV and Aids response, we will win the battle.

 

If I could, I would ask government to make ARVs available in all hospitals.

Most health centres in rural areas don’t receive the life-prolonging drugs regularly and because travelling to hospital is a challenge, people resort to sitting at home waiting for their death. This is deplorable. I would advise fellow Malawians to get tested and know their status. If you are HIV positive, do not despair; it’s not the end of the world. I have lived with the virus for 16 years now and I am still healthy.

 

I have one or two dreams in the pipeline.

I would like to find sponsors to reach as many communities/workplaces/churches as I can to do HIV and Aids advocacy work. I have been inactive in my business and would like to revive it. I plan to open a small lodge in Mzuzu soon.

 

 

Crossing off Lilian’s list

Obtained Pitman’s advanced certificates in typing, shorthand, English for business communication, book-keeping, commerce, office procedures and business administration and management from Ekwendeni School of Commerce and Polytechnic.

Holds certificates in Home Based Care, Counselling, facilitation, advocacy, human rights/Gender, women and girls rights, financial management, HIV testing and counselling, PMCT, Nutrition, ART (ARV) treatment literacy, organisation development, monitoring and evaluation.