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Meeting Caroline

I first met Caroline when visiting Jinja in December, 2014. I was volunteering for TUSC and accompanying Yakub and "Billy Bus" on community village visits. One of our visits included providing some sun protection and sun education to a group of girls afflicted with Albinism.

Being a fair skinned Caucasian from Canada, I was happy to go along and help out where possible - hopefully instilling some wisdom to these young women and reminding them of their value and worth despite the stigma that they endure. Did you know that in many parts of Uganda, people with Albinism are being hidden away, hunted and even killed for their body parts? There are widely held beliefs that the body parts of people with Albinism have great magical powers and there have been high profile cases of people with Albinism being sold for witch craft and sacrifice. Witch craft is still very much alive and well in many parts of Uganda, especially the rural villages.

When we arrived at the home of these beautiful young women and their family, we were welcomed with tremendous grace and warmth – characteristics typical of most Ugandans. I was provided the only chair that they owned - a plastic lawn chair - and the rest of the group either sat on the grass or a blanket. I felt awkwardly special because I had not yet done anything to help! We provided Caroline and her other Albino family members with some sunglasses, long sleeve shirts and sun cream and through Yakub's translation - tried to impart the importance of protecting their skin from the very strong sun in Uganda. (Uganda is located directly on the equator.) Yakub very kindly introduced me to the girls as their “Canadian sister” (after all, I look more like them then their own brothers and sisters, don’t I?). These young girls smiled bashfully and my heart was filled with love – hoping that these beautiful young girls would finally feel like they “fit in” somewhere.

Through our visit, I became informed that Caroline was suffering from Skin Cancer on one side of her face - hence the large bandage wrapped around her head. I was shocked and incredibly humbled - this young woman was suffering so much, yet behaving so stoically – still moving around and smiling! I was also incredibly disturbed that someone so young should have to suffer so horribly from a disease that is mostly preventable and curable. Caroline mentioned in discussions with Yakub that she was having issues with her bandaging – the ones she was currently using did not provide proper breathing for her wound – so I offered to help out and purchase the correct bandages (the very least I could do). We promised to return in a few days to help Caroline with her wound.

A few days later we returned with some medical support and the bandages to re-dress Caroline’s wound. The re-dressing was done in a small “pharmacy” – a room about 5’X3’ in size with a mud floor (hardly a sterile environment!). Caroline sat on a chair while medical support removed and cleaned her wound. Words cannot express the shock and horror I felt when Caroline’s bandages were removed and I saw her wound. Sitting in front of me was a young (23 year old) woman quietly enduring excruciating pain. Tears streamed down her face. I had to leave the room.

After her dressings were changed I had a quiet conversation with Yakub. Being naïve and slightly ignorant I could not compute how it was possible that this young woman should have to suffer so much when there were obviously steps that could have been taken by her family to help her and prevent her cancer from progressing so far. Yakub explained to me that Caroline had begun to receive some treatment before, but her friends scared her away saying that the radiotherapy she was receiving was filling her with evil spirits. (This is all part of the societal stigma that goes along with having Albinism in Uganda.) Yakub and I decided we should try to convince Caroline to try again – to be reassessed by a doctor and find out if anything could be done.

Caroline’s story is a long and sad one – a story of a young girl who endured many difficult situations. She was raped and became pregnant with twins. She lost her babies in child birth. And, she became infected with HIV. All of this occurring before the age of 23. Yet she was an incredible inspiration to me. A representation of strength, grace and beauty.

I have long since returned home to Canada, but thanks to some great friends at CoRSU hospital and some great friends of TUSC, Caroline was expedited to Entebbe to be assessed for surgery. Yakub and “Billy Bus” transported her to CoRSU and helped facilitate communication between Caroline and the medical team. Unfortunately, after receiving a CT scan, it was determined that surgery was not an option for Caroline - her Cancer had progressed too far. Currently, Caroline is receiving palliative pain management. I have sent her a letter, which Yakub delivered to her; TUSC visits and checks in on her regularly, helping to deliver her medication and help in any other way possible.

I don’t know if I will see Caroline again, but she will be forever in my heart. I hope when I return to Jinja next if I don’t see her, I will be able to visit with my other “Ugandan sisters”. Sending blessings to Caroline. xoxo

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