Wednesday, 4 August 2010

I thought I was going to spend this post writing about the things I've been learning in hospital - interesting clinical experiences that remind me of why I love Medicine. It was going to be a funny post. But I was wrong and that post will have to wait, because this one is more important.

A friend once told me when I confided in her about my pervasive self doubt, that my elective would be a great boost for my self confidence. I didn't understand what she meant at the time, but she was right - it's out here that I'm finally beginning to realise that I actually know stuff, that I'm good at what I do and can be even better if I just believed in myself. When you see people that really need your skills (or the skills of any physician), there is a passion borne out of your compassion for their situation that makes you overcome your own shyness or fear.

It can also lead to profound sadness. I made friends with one of the girls who attends the Adolescent Girls Programme here (a project set up to help young women interact with their peers, have fun, give them personal, social and health education and educate them on self defense and self esteem - to help them see themselves as young women full of potential and not just mere chattel or somebody's future wife). I was walking to get dinner when I bumped into a friend who is one of the interns here, chatting to the girl (henceforth referred to as N). She was impressed by how good her English is (in this area children are educated in Marathi); while not fluent the three of us managed, with much gesticulation and clarification, to have a long chat. N told us she had an English-Marathi chart and she would teach us Marathi. She is a friendly, bubbly, intelligent girl.

I bumped into N the next morning and went over to say hello. She was holding her little brother, who was very friendly and playful. I could tell just by looking at him that he has cerebral palsy. His legs were thin, somewhat atrophied and hypertonic - I was guessing he had a spastic diplegia. This was confirmed when N told me that he can't walk and put him on the floor to demonstrate - his legs went into the characteristic scissors position. He had communication difficulties - N said he only had 3 words and couldn't hear; he drooled constantly. But he was a lively child who gesticulated wildly with his hands when excited. He always returned your smile, laughed a lot, and gained a lot of pleasure from the passing vehicles (showing that his communication problem probably isn't due to a lack of hearing) - he seemed to be really stimulated by motion.

I asked N if her brother liked to play. She seemed confused (remember, we were dealing with a big language barrier, and most of our conversation was helped with body language. How do you act out the word play?) and we went on to talk about other things. We were standing outside the preschool at the time. When the children arrived with their squeals and their mirth, the conversation turned back to play, this time led by N, who asked what games I knew. I seized the opportunity to ask if her little brother played any games. No, she said, because he couldn't walk. But could he sit and play? I asked, what if you sat him on the ground and played with him? He couldn't sit either, I learned, because he couldn't maintain his balance. He had to be carried all day.

I can't get N's brother out of my head. He is a delightful little boy with a family that obviously loves him very much and shows him a lot of affection and consideration, for which he is fortunate. But I feel sad that he hasn't had all the opportunities he could have had - therapy that could preserve some independence for him: physiotherapy for balance and posture, occupational therapy to help him move around, speech and langauge therapy to assess how much verbal communication he is capable of and help him to express himself. Consequently, his intellectual potential remains untapped and I am concerned that this may be irretrievable. Most of all, I feel sad that this beautiful boy is deprived of play, such an essential component in the life and development of any child. I feel for his father, mother and sisters who unselfishly look after him, holding him all the time, but am also aware that this comes at a price of the welfare of the family since it prevents them from attending to other matters. I wish they had more support.

I think of all the support that is available at home for families of people with disabilities - financial assistance from the government, day centres where people can go and have a full, stimulating and rewarding day with physical and intellectual stimulation and social interaction. The nearest such place is 4 hours away in the city of Pune, completely unfeasible for this little boy, unless he were to stay there residentially. And how would ripping him away from the family that loves and cares for him help? They need local services and a local source of support. These are the challenges of life in the rural area. This is the challenge of the vulnerable in the developing world. It's not just theoretical. It's people's lives that are at stake.

I'm going to try and find out more about the wider issue in this area, but even if I achieve nothing else, I hope that by the time I leave N's brother will be playing. I think I have an idea...

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