Post-polio syndrome (PPS) is a condition that affects polio survivors years after recovery from an initial acute attack of the poliomyelitis virus. Most often, polio survivors start to experience gradual new weakening in muscles that were previously affected by the polio infection. The most common symptoms include slowly progressive muscle weakness, fatigue (both generalized and muscular), and a gradual decrease in the size of muscles (muscle atrophy). Pain from joint degeneration and increasing skeletal deformities such as scoliosis (curvature of the spine) is common and may precede the weakness and muscle atrophy.
National Institute of Neurological Disorders and Stroke
Having lived with (probable) undiagnosed Polio since an infant, Joe is now very unwell, I guess with Post-Polio Syndrome. He reports that for the past five months his already-incapacitated legs have become floppy and paralysed. He can no longer leave his bamboo shack and the hand-propelled bicycle-wheelchair Chom and I sourced for him over a year ago now, sits unused. He has constant pain in his joints particularly in his legs. There is no clinic near his home and he cannot maneuver out of his home even if there was somewhere to go for help. There is no money to consider purchasing pain relief.
I promised to send medications and once I reached Phnom Penh en route home I purchased some painkillers from a pharmacy. Two months’ worth of Tramadol and Paracetamol was not cheap even for me (but I had money from my generous family and friends to use in just such a situation). There must be many thousands who suffer and die in pain, unable to afford any relief. I delivered the medications to Chom near his Japanese language school, who delivered them to Kampong Cham when he travelled home to see the family. Dan collected them and transported them to Joe in his remote village for me just the other day, reporting back via Facebook:
Him: Hi Helen How are you? Today i bring the medicines and cream to give Mr and i tell him to use the drugs so his daugther is understand . Thanks bye!!!|
Me: Thank you SO much . He looks so unwell, I really feel bad for him. I hope to help him some more but I do not know how? I hope your family are all happy too. See you very soon again.
Him: Yes. You welcone. I know his family unwell and i have a small money for him (10000 riel) because i not have money too. Thanks
This is just one example of the persistent evidence I have observed for years now, of support to the poor coming almost exclusively from other poor people. Dan also sent this photograph of Joe receiving his medications.
Joe has three daughters. As is often the case in Khmer families, they all have ridiculously similar names. I’ll call them Simona, Sophia and Selena, with their mother’s name of Sabrina! Selena is married and lives with her husband somewhere else. I have not met her. Simona is a blind widow with two daughters, 5yo and 6yo. They live with Joe and his wife in their banana frond/bamboo hut. Sophia is a single woman, who had a strabismus which, when we took her blind sister to have eye surgery in Phnom Penh last year, also had surgery to correct the defect. Chom translated for me oneday last year, that because of her eye “that looks at the capsicum but sees the cucumber”, she often wanted to kill herself. When I told him “but she is beautiful”?, he replied in English as she watched silently unaware of what was being said, “Helen, you are the only one who thinks she is beautiful. In Cambodia she will not find a husband, because when she looks at the capsicum she sees the cucumber! You should put her photograph on Facebook so that one of your Australian friends can see her and maybe marry her?”. Following our rather memorable journey to Phnom Penh last year, which I blogged about at the time, Sim now has two eyes which are perfectly aligned, such that when she looks at the capsicum, she sees the capsicum!
She has moved away from Joe and the family in order to support them with an income. She happens to live a very short tuk tuk drive from Paula’s home, beside an ice making factory. Housekeeping for two “rich” families, she works 5am until 9am at one home and 5pm until 9pm at the other, earning a total of $35/month. This allows her to purchase a $25 bag of rice for Joe and the family at home, which lasts one month. The remaining $10 covers her expenses away from home. It is the tightest budget my rich-world-brain has heard of yet!
When we visited Paula two Mondays ago, we visited Sim first. I had a silver compact mirror with a kiwi engraving on the lid for her to admire her new looks which she otherwise does not get to see. She informed me that there was no way for her to purchase new clothes given her financial obligations to the family, and that she only had one outfit to wear. We went to the local market, a series of tarpaulin-covered stalls sitting in the hot dust. For $25 she came away with three shirts and two pairs of trousers. I came away with the experience of buying from a market vendor who, instead of haggling about price with the wealthy foreigner, asked Dan what we were doing and brought his price down so that Sim, acting as though it was Christmas, could have an extra shirt at his expense! The generosity of the poor never ceases to astonish me.
A wall of steaming cold water plummets from an unknown source, down the side of a building, to an unknown location, behind the wooden house under which we sat during our visit to Sophia. When she saw me looking agape at the sight, she grabbed my hand and walked me up the hill, around puddles of tarred mud, to the factory door where machines and disused engines sat in the muddy tar, rumbling at decibels which would be illegal in a residential area where I come from. I had no idea of what she was telling me but it was obvious that she felt pleased to be able to give something back, by way of teaching me about the factory where she lives! It was a hot day and her “housemate”, swinging in a hammock next to the metal chair they sourced for me, turned his fan around so that it blew onto me.
When I’ve visited Joe in the past I have wondered at the car battery sitting in the doorway leading from the big open front room, to the smaller back room. It all fell into place when Sophia, through Dan, asked if I would consider sponsoring the family to have electricity connected “because they use the battery but it only gives very weak power and they are the only family in their village with no power”. Connecting electricity at their shack will cost US$250 plus 25c per kilowat of usage once connected, which they will also need assistance with. Whilst I can support this, and keep imagining how much more comfortable Joe would be if he had a fan to keep him cool and to keep the swarming mosquitoes at bay, I am also wracking my brain trying to think of a way to help them develop an income of some kind so that my support is less necessary. It is not an easy idea for people living in a village where there is no economy to generate income. People grow their own food and rely on distant relatives, who live away from home in order to be able to provide financial support. With two disabled people in one family, there is more pressure on Joe’s two unimpaired daughters than they have the capacity for.
I am returning to Cambodia in early February, when I will have time to travel and visit for three weeks prior to commencing my MSF assignment. My good friend Caz will be traveling with me and she is nothing if not an Ideas Person. Who knows what we may be able to come up with together for Joe and his family of girls.