South Africa Survivor Forum: Ursula’s Story


It was an emotional and intense day- the kickoff of the first ever Cancer Survivor Forum in South Africa. By mid afternoon, we had a hall of stakeholders in the Civic Centre where the Forum is occurring- at over 3/4 capacity. NGOs, survivors, doctors, pharma, government, family members, community, media, the business sector. We had community members who were given transport in from Khayelitsha (a local township) so that they could have access to the Forum and participate- from a lot of local clinics out there. Young folks (primary and secondary school kids were invited in to observe), and a group of elderly folks as well. A truly beautiful and diverse meeting of stakeholders of what is really a ?rainbow nation.?

Photos by Alpheus Media

Our survivors presented their stories with vigor and emotion today- some still fearful, but vastly courageous to get up there on a podium and share their pain, frustration and rebirth as cancer survivors with a room of strangers. They shared poems, and quoted great writers. Some cried. Some were stoic. Black, white, old, young, low income, upper income- some with the best treatment at private hospitals who used their stories to draw a comparison to those with no access and no voices. Some who waited weeks and months to get a diagnosis or to receive treatment in the public hospitals. Several who experienced effects of stigma, were misinformed, abandoned, teased, shunned, or isolated. Many who had financial issues, emotional issues, lacked support or comfort. And yet many who found new friends, hope in the kindness of their communities, and immense support among a network of strangers- fellow survivors. As Henre Pretorius, our meeting chair, stated in the late afternoon as he addressed the room of survivors, ?Cancer has brought me closer to my own, how do I say, human being- we are almost closer as complete strangers than to some of our family members because of what we have gone through.?
One very poignant survivor story from today?s testimonies stands out in my mind. Ursula came to share the story of her best friend- who is battling for her life as we speak. We learned that her friend has a baseball sized tumor in her sinuses which has essentially deformed her face to the point that she is unrecognizable- it has spread to her brain as well. This was a result of being completely neglected by the South African health care system- she was diagnosed 9 months ago and just received treatment just two days ago. She was overlooked, ignored, nearly forgotten, despite Ursula?s pleas, phone calls, medical appointments, and efforts.

Ursula was terrified to publicly share her friend?s story when we met her just a few days ago. She is a beautiful auburn red head- soft curls, big bright eyes- you can almost sense what?s happening behind them. She has a certain meekness about her, but I think we all had a gnawing sense when we met Ursula that she harbored a deep rooted strength which likely ran too deep within her to even rise into her own consciousness.  From the moment she stepped into the training on Tuesday, she told us she wasn?t prepared to get up on the podium- that she had decided in the last week that she changed her mind. She didn?t want to speak at the Forum anymore. She told this to us with a sheer panic in her eyes and in her voice.
So the local cancer NGO leaders convinced her to video her story- that if she was comfortable, we still wanted to capture and share it- and could do it in a non-threatening manner. She agreed- it was filmed, and when it was shared today, in a room of silence, something miraculous happened. It started the moment her soft face came up on the screen- vulnerable, frightened, real. It continued as we saw tears stream down her cheeks as she quoted her friend: ?they know what?s wrong with me- why are they just letting me die?? And it escalated as the audience realized that Ursula was sitting there in the front row- re-experiencing her own emotional breakthrough along with us. I have no doubt that in that moment, every person in that room was connected by a tangible energy which can only be described as an overwhelming sense of humanity.
Ursula approached me after the session, more lively and empowered than I had ever seen her. She explained that after hearing her story, three journalists asked to publish it this week. She was excited to comply- it was as if every bit of her fear and hesitation had simply melted away, leaving this strong, raw, fresh person, ready to take on the world. And it got better. The most important attendee today was Sandhya Singh- a Director in the Ministry of Health. Ursula explained that Sandhya too had approached her at the break- moved by her friend?s story. She looked Ursula in the eyes, pulled her cell phone out of her purse, and called the Minister of Health on the spot- who committed to personally and quickly taking on her friend?s case- that she needn?t worry anymore. And it got better still. A gentleman approached her. He took her by the hands, with tears in his eyes and explained: ?As a  man and a South African man, we don?t show our emotion. And here I am crying to you, a stranger.? He explained that he was moved beyond words by what he had just heard- that he was inspired by her strength and courage; that his wife was battling for her life. Ursula told me that this man simply looked at her and asked for her help- how could he be as strong for his wife, as she was being for her friend? In that moment, Ursula became an empowered advocate and mentor.

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