The story of Mara – what leadership lessons can we learn from a HIV-victim?

Mara - one of the most inspiring leaders I have met

Mara 

When I meet Mara, one of our alumni students, in a hotel lobby in Lilongwe, the capital of Malawi, I am struggling to comprehend that this vibrant and very intelligent woman with the warmest smile has shaken hands with death. She was in a place beyond any rescue, or so everyone thought. Everyone except for Mara.

The life of Mara is a true story of hope. A story of a woman, who had lost everything, but still refused to give up her dignity, love and compassion for other people. She tells her moving story with such vividness and intensity that I am struggling to keep myself composed. I watch her eyes shift from the darkest black to the most radiant sparkles when she describes her long journey from a place of sheer anguish to happiness and peace.

This is her story.

Mara grew up in one of the largest cities in Malawi. She was one of the lucky few to have a university education, and upon graduation she joined the Family Planning Association. Sadly, her husband passed away very suddenly in 1985, leaving her with three young children and heavily pregnant. She kept going, determined to provide her children a safe and happy upbringing.

One day, she found an advertisement at her office looking for volunteers to participate in HIV testing and research. Mara, who was very modern for her time, enrolled. Only to find that she was HIV positive.

Funeral in Paradiso

At this time in Malawi, HIV was believed to be God’s punishment for prostitution or adultery, a sign that you were going to burn in hell. Thus, most people shied away from clinics, too afraid to get tested.

In Mara’s community, on average 10 people died everyday as a result of HIV/aids and the pandemic continued to spread uncontrollably. Families barely had the time to bury the dead, but even worse was the feeling of shame, stigma and dishonor left to disgrace the mourning family.

In the late 1990s, the poorly run and heavily corrupt government threw Malawi into severe economic turmoil and people suffered from extreme poverty. In Mara’s village Paradiso, people could no longer afford proper funerals for the vast number of dead.

To cope, the community dug mass graves for the ever-increasing piles of bodies. As a long-standing tradition, everyone from the community contributed with a little food to show their respect for the dead. However, as the news of Mara testing positive spread, no one wanted to touch her gifts, like if poisoned. People started to take detours to avoid her house. Her family rejected her and called her shameful. In church, people avoided sitting on the same bench as her. It went as far as the pastor telling her explicitly that she was no longer welcome in the house of God. She was completely isolated from the community and no longer worthy of human connection. At this time, Mara had lost 75% of her body weight; she looked like a holocaust victim and was so fragile her children had to carry her around. She barely had the energy to stand up and with no income, her children suffered from malnourishment and fatigue – also they were excluded from all communal activities.

Where is hope?

Tragedy and disaster continued to intensify rapidly, as not even the district chiefs or politicians seemed capable of getting a firm handle on the situation. When the parents of three young children in Mara’s village passed away from the decease, their house was vandalised beyond recognition, leaving the children homeless and with no capital to build a future. Mara realized that she this could very well become the brutal destiny of her children too. A firm determination to protect her children from such hardship forced her to keep breathing.

With very little hope left, and only the thought of her children keeping her alive, she so found out about a new HIV research programme, recruiting HIV positive people to participate in drug research. This could be Mara’s ticket to survival. However, when put in front of a doctor, she was immediately rejected. “You are too far gone, it is a waste of resources” was the doctor’s response, effectively signing her death bill. Remarkably, Mara was persistent and did not give up.

Never give up

So, finally the doctor agreed to let her have a brain scan. She immediately took the chance, and a week later she was provided medication. Already after a week she felt stronger and started to put on weight. As soon as she could walk again, she went around the community to encourage other women with HIV symptoms to get tested. “Get tested now before it is too late” she pleaded. “There is medicine now that will stop the decease from spreading, you don’t have to die”. For a long time, the women remained too scared, dwelling at home to face their inevitable faith of death. Rumors started to go around the village. “HIV is witchcraft”, the people whispered. “In every house Mara goes to, someone dies”. The situation seemed hopeless, but Mara kept going. Desperate to save the people of her community, she called all village chiefs to a meeting.

She called out “We need to do something. I was dying but now I am fine. We need to save our people” she demanded. The district chiefs finally agreed, and as a resulted mandatory testing of all village members was introduced. A community-project under the name Paradiso was formed, lead by Mara. As the project took off and more and more people got treatment, other evil rumors about Mara started to spread. “She never had HIV” people gossiped. “She just went on a stringent slimming programme”.

With energy and an admirable passion for her community, she kept pushing and was slowly accepted by the villagers. Step by step she earned the respect she so desperately deserved. With time, her acts of heroism in combination with very effective influencing skills, were recognized all over the country and she was so appointed the Chairperson of the National Aids Commission, one of the most influential people in Malawi.

Today, she fights HIV all over the country, working with the World Bank and other foreign investors in saving thousands of peoples’ lives. On a personal level, she now won back the full support of her family and community as the strongest advocate for hope. The pastor, who once rejected her from church, is now her closest friend.

When I ask Mara how she found the hope to continue in the darkest of moments, she replies with a smile: “Someone told me that great people have to suffer. I did, but now I am feeling great. I keep forgetting I have HIV and live the life I have always dreamed of and knew was possible. Believing is key to success. As a leader you have to believe that you can change something, otherwise why would people follow you? All people believe in something, even though they say they don’t. At a minimum people trust they will wake up the next morning, because why otherwise go to bed? So I say to people “Find out what you believe in, and build your vision from that belief”.

She adds; “As part of the leadership course delivered by Emerging Leaders, I also learnt that leadership does not exist for you, it exists to benefit others. This resonated with me, and made my conviction even stronger.”

As I watch her walk away, I am thinking about how important the notion of belief is, both in our personal and professional lives. Belief gives us the courage we need to pursue our dreams, finding a purpose.

A quote from the modern legend, the late Steve Jobs, springs to mind. Steve Jobs said: ‘The people who are crazy enough to think they can change the world… Are the ones who do.”

We are all capable of changing the world in our own way. All we have to do is to believe.

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