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Monday, 22 March 2010

Volunteering with the Ndebele community in South Africa - Page 3

Written by Emma Finlay
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I would like to share one unexceptional day of the three weeks I spent in South Africa.

It started off normally except we were out of orange squash. No big deal, I took water instead. As I was walking to work, Elizabeth caught up with me, slightly out of breath, and handed me a small flask. “It’s your orange juice for lunch. I’m so sorry it’s late. I noticed last night that we had run out of orange juice in the lodge so I planned to get some from my house and give it to you this morning, but you are quicker than usual. I know you are here alone and that must be difficult – we all need family and friends. It’s my job to look after you and to be your family, so I wanted to give you juice from my home just for today.”

I wanted to go to Nathi and make sure he was ok, but I had been warned that I should go nowhere near blood if I saw it – the HIV rates in this community were unknown but suspected to be as high as 40%. I wanted to scream at everyone to get out, because the crowding was not helping him, and I wanted to grab the old man by the scruff of the neck and kick him out the door.

But instead I tried to stay calm. I knew that Nathi had epilepsy. In fact, his epilepsy was the main reason he was here. I realized he had just suffered from an epileptic seizure, which stopped only seconds before I arrived, and the blood was because he had bit his tongue during the seizure.

Nobody around Nathi seemed to know what to do – no one had done anything to cushion the seizure. They seemed very uncomfortable with what they had just seen. The crowd had gathered to watch the freak-show seizure and after they thought he was cursed. The old man believed that he had prayed the seizure away and that somehow Nathi must have invited it through dealings with the devil. Worst of all, Nathi seemed to believe these things too.

Once we made sure Nathi was stable, and the blood was cleaned up, he went home and life returned to normal. When Peter came back I told him about what had happened and sympathy swept across his face. He talked to me about the situation. Clearly, the medical care Nathi was receiving was not good enough – he had medication which he shared with others who also had epilepsy and it had been years since he’d discussed his epilepsy with a doctor. There were two other people in the area with epilepsy and all of them were in the same boat. Nathi’s seizures were frequent and extreme. Neither Peter nor Nathi knew what a seizure was, how to recognise the onset or avoid inducing them. The condition was considered embarrassing and shameful.

Volunteering with the Ndebele community in South Africa, volunteering with People and Places, volunteer South Africa, People and Places, Emma Finlay

Peter also told me that many years ago his brother had epilepsy and a doctor had told them that epilepsy was genetic and hereditary. Peter should expect to develop it at some point as well. Since that moment, Peter had been waiting for the day when he would suffer his first seizure. This led to a long conversation between us about South Africa and the legacy of apartheid – the quality (or lack of it) of healthcare, education, social support and services for a large black community. I understood that things were better now, 14 years after Mandela was elected as president, but they still weren’t right, and they certainly still hadn’t corrected all the inequalities apartheid had left behind.

I was so angry and frustrated. As I walked back to the lodge that afternoon I decided I had to do something. I rang my Dad and asked him to research everything he could about epilepsy. Ten minutes later, he rang me back with the Irish Epilepsy Association website open and dictated the entire Question & Answer section to me. After telling him my day from the beginning to that point, I ended up in tears again, but I was so thankful for the warmth, comfort and relative normality from just speaking with my father.

After the call, I wrote up an information leaflet about epilepsy. I took them back to the shop and took Peter through the content carefully. I felt that Nathi might be ashamed to know that I had seen what had happened earlier, so I needed Peter to be the one to help him. I saw the relief in Peter as I told him there was nothing hereditary about epilepsy. He was also surprised to learn that seizures were a nervous system issue and not related to muscular activity and that they didn’t normally damage the sufferer. I also made clear that with monitoring and medication, epilepsy could be completely controlled.

(Page 3 of 4)
Last modified on Sunday, 16 December 2012

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