On a routine visit to the Thalassemia Day Care Centre at IGICH today I came across a distressing piece of news. The Doctors told me that one of the child who was coming to the day care for a few weeks now has been sent back home from the ICU. The look on the faces of the doctors told me that it was no reason to celebrate. Even as they acknowledged the little help that was offered to take care of the expenses on the medical tests that had to be outsourced, what followed was completely shocking! "His family decided to take him home in his last moments" is what the doctor uttered. The distress on her face spoke the rest. Few days back when I received a call to approve the funding for this child's tests, I was told that we have a child who is in extremely poor shape. He started on chelation at an age of 14 years in-spite of the fact that he was taking blood transfusions since the age of 1. There we no ferritin reports in his file. His mother did not know what iron overload meant! They had told the counsellor that all they used to do is go to the hospital each month and take a transfusion.
We are close to celebrating the anniversary of the Thalassemia Day Care Centre - or did I say 'celebrate'? It is a year since Sankalp India Foundation decided to participate in the delivery of systematic healthcare to the children suffering from thalassemia. This one visit to the day care was not an exception. Walking though the children's ward at Government Hospitals, the faded smiles often tell me tales of horror and misery. If one knows that somebody is terminally ill and current state of medical science has little to offer to save the person it's another thing. When one looks at the face of the child suffering from a disorder like thalassemia - sometimes the realisation is that the child has little chance of living a normal life not because there is no cure, but because there is nothing being done to deliver cure to this child.
Thalassemia is not a disease. It is a disorder. There is absolutely no reason why a person would not live a normal life if given proper blood transfusion and chelation. Yes, there will be problems. But then don't a lot of us live very fulfilling lives with not one but many problems surrounding us? I would have wanted to get back to the volunteers to inform them that the coming together of Indira Gandhi Institute, Applied Materials and Sankalp India Foundation truly has offered that one chance to have a good life to these children. That is true. But what is more important for the volunteers to know is that all that has been done should just be seen as the starting point. There are numerous children out there who need help. Something needs to be done!
I ask myself a question. Is it okay for somebody to die in pain simply because the person is born in a poor family? Is it okay for a child to frail away just because his/her parents are uneducated and stay in a village? What good is me being educated? Is education something which stripes from us the basic human nature of sharing and caring? I know I am going a little too far here. We really don't like emotional drama do we? But I just can't these little children in my nation disappear in vain! As I feel the pain, I tend to get angry with the other people around. The doctors, the nurses, the administrators, the rich and the powerful. What are we like this I ask myself.
The darkness and the gloom that surrounds me at this moment has made me incapable of doing anything. Like an untrained mind, I waste my time trying to do this and that - but nothing productive. Then I do what many of us have got used to doing in today's world, aimlessly browse the web. A few clicks away I find an article on the Times Of India with the title: "Naga IAS officer builds 100-km road in Manipur without govt help". Actually the title says a lot in itself.
Here is an extact from the article - "IMPHAL: Villagers of Manipur's Tousem sub-division in Tamenglong district are a busy lot these days. At least 150 of them on a daily basis are clearing away a thicket with their machetes and daos. Some are lugging away heavy branches of recently felled trees; and others are operating bulldozers and earthmovers to give themselves the "best Christmas gift ever".
Theirs is one of the remotest corners in the country, where the India shining story has not yet reached; but the villagers are part of modern India's most ambitious road project embarked upon by one man, a young Naga IAS officer, without any funding from the government.
A 2005 graduate from St Stephen's College in Delhi, Armstrong Pame is the sub-divisional magistrate of Tamenglong, his home district, and the first IAS officer from the Zeme tribe. He has, of his own volition, begun the construction of a 100-km road that would link Manipur with Nagaland and Assam" - http://timesofindia.indiatimes.com/india/Naga-IAS-officer-builds-100-km…
Suddenly like the warm rays of sun touching a drenched person shivering in cold, I began to find my comfort. This IAS, a Government officer did not sulk away when hundreds of people died of tropical diseases in his village this rainy season. He did not sulk away when they could not reach medical centres even after being carried on bamboo sticks for 2 days. He did not give up even when the project passed by the Government in 1981 failed to see the light of the day. He decided to do only what an individual has in his capacity - take some action!
Now I stand weighing my pain against my inaction. Waiting to see what wins! But if I do nothing, I will know, deep down inside, that my emotions on this day were no more powerful than the surge of emotions we feel when we watch a dramatic scene in the cinema hall. I wont blame anyone. I won't point at the mistakes. All I will hope for is to have strength enough to stand by the pain which of all people in the world, I believe affects me!
The only good thing is, I am not alone! There are those great people who I have met along the winding journey of my life. People whose heart beats in sync with me. People with whom I enjoy emotional harmony. It's the harmony I seek to enjoy with the blessed hearts - with Armstrong Pame. It's each one of those hearts who feel the same thing! It's those who see a point in here. And all I got to say is - time to act - one more time!