Coping with lifelong chronic disease …….
At some 12 km South of Phnom Penh are the infamous Choeung Ek Killing Fields, the execution area of the victims from Khmer Rouge Tuol Sleng prison. Next to it is the Choeung Ek pagoda. MoPoTsyo’s Patient Information Centre member, Mrs Ouk Ratha waves to me from a distance as she walks towards me with her grandson on her arm. At 52 years old she looks young for a grandmother. “You are under the wrong tree!” she tells me. “This is the South side of the pagoda and I am living on the North side. I realize that the magnificent tree at the Pagoda entrance is a Po tree and not the Ampil tree she had told me about on the phone. Protected from the baking sun by the pagoda wall we stroll to her house, me with my bike and she with her grandson. “In March 2013, I moved out of the city centre and came to live here at the home of my daughter. I am alone after the death of my husband. He had diabetes too and died of Kidney Failure. Did you know?” She asks me. I answer her that I had heard it from the Peer Educator. Her husband was only 48 years old when he died, but he had been sick for two decades, ever since their youngest daughter was born. “At that time no one ever thought about diabetes or kidney disease, only AIDS and TB. Over the years we spent so much money trying to get diagnosis and treatments for him. Despite his disease, he has always kept working except for the last year of his life. Then he died in August 2010. He was a Police Officer in charge of the department for Human Trafficking”. The wall of the room is lined with her husband’s pictures and training certificates. “The state continued to pay his salary to me for 12 more months. After 12 months the allowance was reduced to 8000 riels (2 USD) per month. I am allowed to collect it quarterly. The gasoline to travel to the place where I collect it costs me USD 1.25, so for collecting USD 6. The children are all 18 years or older so there is no allowance for them. I also try to sell little things but I am really struggling to find the money to pay for the medicines. Nowadays I depend on my daughter. I ask her about her children. The eldest daughter is 27 years and works as a cleaner in a Hotel. The husband of her eldest daughter is a tuktuk-driver. I ask her about the second child. “The next child drowned”, she says. When she begins to talk about her 24 year old son’s death, tears are running down her face. I hadn’t heard about this tragedy and feel sorry that my interview has upset her.
After some time we move on to talk about her other children. “I have 1 more son and 2 more daughters. They work In the garment factories. My eldest daughter is working during the day so I take care of the baby”. His name translates as “Monday August”, because he was born on a Monday in August, nine months ago. Monday August is not happy with all the attention I am suddenly getting from his grandmother, so I let her appease him, while I take a look at her self-management book. It prescribes 7 types of daily medications including insulin. Her total monthly cost is 36,630 Riels (USD 9) including 15 syringes for injecting the insulin. From the peer educator she has learned how to inject herself so she does not have to pay a nurse to give her daily insulin injections. She will go to see the Doctor again next month. She knows that he wants her to inject twice per day, instead of only one time as she is doing now. Since she moved out from the city center, she now lives far away from the peer educator and she is not getting as much community-based support as she was used to. She is using urine glucose strips to check her on her glucose levels, because she has no blood glucose meter herself. “I depend on my daughter’s salary”, she says. “I borrow the money to pay for the medication and each time when she gets her salary, I can reimburse the loan”. To generate some income for herself she sells local products that hang above a small table at the entrance of the house. To show me where she stores her insulin, she opens an orange cool-box that contains mainly water bottles that are for sale and shows me the plastic container with two 10 ml vials she bought from MoPoTsyo’s Revolving Drug Fund. She continues to take glibenclamide (=Glyburide), metformin for her diabetes. “I have also medicines for high blood pressure and to improve my lipids”, she says. She displays her medicines on the table. “If it weren’t for the 70% discount, I would not be able to afford it”, she says. When she sees I am looking again at the row of pictures and the training certificates I spot also the picture of her son, the one who drowned. “I only have his picture now”, she says. Not knowing what to say, I can only mumble “Your life has many unhappy events. It must be difficult for you”. “It is my destiny” she says but uses the Khmer word “promlikhet”, for the Buddhist concept that refers to the consequence of a cause. “The monks tell us that this happens if we don’t do the right ceremonies.” she says with a weak smile.