Joe died in his home three weeks ago, unknown to any health service. His family do not know why he died. Joe also did not know why his legs became weak/deformed as a young child. All he could tell me when we met, was that he got a fever and then stopped walking “during Pol Pot”. The story fits with Polio. His death fits with Post-Polio Syndrome. The Mayo Clinic’s website states that “up to almost half the people who had polio at a young age may experience certain effects of the disease many years later — post-polio syndrome“. They talk in detail about the syndrome at Mayo Clinic Post-Polio Syndrome.
When I saw Joe in November, lying in a hammock tied to the supporting poles of the family’s thatched bamboo/banana leaf hut, he was anxious. His legs had become progressively weaker and painful, he had trouble swallowing, seemed even thinner than usual and was constantly exhausted. He was no longer able to get around in the wheelchair we had sourced for him about 13 months earlier. I was only on a fleeting visit and so I asked if, when I returned in February, he would like to go to a doctor or clinic with me? He was extremely keen on the idea. I am sad that he died before this could happen, but I am also sure that there would likely have been little anyone could do for him. I left a very large supply of Acetaminophen, Tramadol and some other painkillers for him, which was probably as much as he could hope for in this environment. Certainly physiotherapy or other such treatments were not a realistic option.
Previously I have referred to Joe’s daughters as Simona (blind widow with two small daughters) and Sophia (single with a bad strabismus). There is a third daughter who is married and lives with her husband in his family’s village. Dan drove me to Joe’s village on Monday morning. We arrived as Simona, whose vision impairment improved slightly after the operation in Phnom Penh in September 2015, was pulling into the driveway with Maia, her youngest daughter, on the carrier of her bicycle. She has enough distance vision that she can transport the children to school on a bike with the girls acting as her eyes on the finer details. There was much excitement to see me, which always makes me very uncomfortable as it illustrates just how desperate these young women feel. When I visited in November, Sophia was living in a different town, working as a cleaner but she returned home when it became apparent that her father was about to die. As Simona was busy telling me through Dan, that she “can no longer live here, it is too terrible now, since Sophia got married and brought her husband here”, Sophia slammed into me from behind, holding me in a gridlock and squeezing me such that I thought we would both topple backwards. We all admonished her until she stopped, then Dan told them “you should not fight, you have to live in peace together”. Sophia looked tearful and walked away. Weeks from their father’s death, emotions are obviously running very high.
The dynamic between the sisters is fractious and complicated as Simona relies on Sophia as the breadwinner for herself and her daughters since her husband drowned in the Mekong in January 2015. We went inside the little house together and sat talking. Joe’s hammock has disappeared and his absence was sad. I explained that I believe I know why he died, and that even in a rich country, he would probably have died. Sophia has married a man who looks at least ten years older than her. He was quiet and pleasant but he has quickly replaced Joe as the man of the house and the second breadwinner in the family. He has also brought his own stock of cows to the family home, which must add to his financial power in the situation.
There are two houses on the family land, both thatched huts. The smaller, younger hut is in bad disrepair. Simona lived in this hut when she married her (now deceased) husband. She has returned there now, but has to vacate during rain or strong winds. She can’t move far from the family as she is not able to cook / fend for herself without assistance.
When I asked if the family had food Dan said that they are living on dried fish and rice. We climbed down from the house and with Simona holding my shoulder, walked across a dirt track, around a corner to the village store. I told her to buy what she needed and was dented $7 for a week’s worth of meat and vegaetables. As I stood in the verandah shade of the wooden hut shop, a lady looked down at me from the doorway of the house next door, grinning from ear to ear and calling out. Before I could even pay, Simona took my hand and led me to the bottom of the ladder. Dan took his shoes off and I asked “are we going inside?”. Yes! At the top of the ladder I was introduced to Joe’s sister and her husband, and instructed to sit down under the fan. They talked at length with Dan about losing Joe, how they knew of me and thanking me for my help, and that they were so happy when Joe got his wheelchair but he no longer needs it and I should return it. “Okay, we can do that, but do you know anyone else who might use it?”. A double amputee in a neighbouring village had been waiting for a long time for a wheelchair and they didn’t want to put me out, but if I wanted to, they could not possibly thank me enough.
On return home with the groceries, Sophia had already lined the wheelchair up alongside the tuk tuk. Dan somehow managed to jam it into the back seat space before Sophia, Simona, 5yo Maia and myself squeezed in with it! About 5km of dust road later, we pulled up to the sight of a wheelchair sitting underneath this man’s home. Foiled! En route home again Simona pointed to my shoes and preceded her otherwise unknown words with “som” (please). She wanted some shoes. So we stopped at a local shoe store and 3 pairs of shoes / $6 later, for her and both of her daughters, we were back on the road. Just near the village temple Dan pulled over and turned off his engine. “Helen, I think that maybe we should give this wheelchair to the monks because maybe they know someone who can use it?”. So we detoured through the Wat grounds, where we were liberated from a very congested tuk tuk!
Yesterday during poolside cocktails in our very plush Siem Reap hotel, Caz and Kelly came up with a cunning plan that the US$3,500 Dan suggested it would take to replace Simona’s little shack with something more solid and safe (using the same materials), should not be such a difficult feat? It would inject a little into the village economy if we can use locals to do the building, which I think will be possible. The house is Simona’s most pressing problem, it would remove her somewhat from the power disparity she faces with her sister. Her lack of income generation is going to be much more difficult to find a solution for in her circumstances. So once more I find myself engaged in my most un-favourite activity, raising money for a good cause. It’s funny how I can be so passionate about good causes, yet so repelled by the activity which makes my good causes come to fruition! Anyone reading this who wants to donate, or even run some sort of a fundraiser (Caz suggests entrance-fee “high tea” at your home is a good option), towards this cause, please contact me! The GoFundMe page is still open, but as they take a 3% fee, if you’re in Australia, NZ or UK, then putting it directly into my bank account would be a better option.