I to have just watched the programme about Pastina and her brave cousin Boniface - I also just felt really sad at the fact that she had died but also at the way no other information about her death was given. Like every one else I was expecting the happy fairy tale ending and was really shocked at the outcome. I just hope Pastina found some happiness in her short time she had left and that Boniface can draw comfort from that - he is truly remarkable.

I was the DOP and I'm the a director of the producing partner in Kenya that filmed Pastina's story. I spent about six months with her during the filming and was with Bonni the day she died. If I can answer any unanswered questions, ask.

Guy

After we completed the film, Boniface worked in our office for about 6 months. He found it hard being away from his family and living in Nairobi is not cheap and in the end it didn’t work out and he returned home. However, Pastina died when Boni was still working with us. Boni received a call one evening saying Pastina was delirious and incoherent. Her family took her from the village to Machakos (the largest town in the region) and put her on a bus to Nairobi. About half way through the journey she died. Because she died on a public service vehicle the law required a post mortem be conducted. It was done at a rural district hospital and although there was an official cause of death given, (I can’t remember what it was) it wasn’t conclusive and the exact cause of death was never established. It could have been Malaria, it was also suggested she’d induced a blood clot on the brain by carrying loads on her head in the tradition African way. Her skull was still in recovery from the operation. We’ll never know.

I’d probably spent the most time with her of any the film crew and got to know her well. I filmed the back story when she returned to her village before the surgery and the entire 10 hour operation. I also filmed all of the post operative footage and the dental reconstruction work she had done in the year following the operation. She had a good sence of humour and was very tolerant of me poking the camera at her when she least wanted me to do so.

Although she died less than two years after the operation, the quality of her life in period after the operation was far superior to how it had been before. Before, she was in constant pain and was given a maximum of three months to live had the operation not taken place.
Her biggest disappointment was that she wasn’t going to look like she did before the tumor grew. Her expectation was she would look normal again. This was created by her understanding of what the doctors had described to her and her limited understanding of the surgical procedure. Pastina had little formal education and had lead a sheltered life until the surgery. I remember her excitement and amazement when she first drove into Nairobi and saw all the buildings and cars. It sounds simple although it was moving to watch.

Apart from the return trips to Nairobi for palette reconstruction and medical follow ups, she was bale to spend about 18 months at home with her daughter in a pain free state. She was able to work in the fields (she couldn’t previously because of the pain) and she was contributing to her family’s upkeep. She regained her self esteem and the quality of life she enjoyed until her death was good.

If the program ended badly for the viewer, take a little solace that Pastina would have died a painful death had the surgery not taken place. The program, by way of giving her access to the surgery, gave her 18 months she wouldn’t have had.

The program also highlighted her condition and that of many people with the same but less advanced condition than hers. Many came forward for treatment before it became critical. Sadly, we also saw some cases as severe as hers. A boy, Willy came in shortly after Pastina’s case was in the newspaper. He lost both eyes and his entire upper pallet as a result of the surgery. There’s a lot of superstition in Africa still associated with conditions like Pastina’s. It’s seen as a curse and the victims are often hidden away to die. Her story has prevented that fate for a few sufferers in Kenya and maybe elsewhere.

Guy
guy@gingerink.tv