Thalassemia. The word might sound discrepant. Let me push the fogs beside for you and make it clearer.
Thalassemia is a form of inherited autosomal recessive blood disorder characterized by abnormal formation of haemoglobin. The abnormal haemoglobin formed results in improper oxygen transport and destruction of red blood cells. Thalassemia is caused by variant or missing genes that affect how the body makes haemoglobin, the protein in red blood cells that carries oxygen. People with thalassemia make less haemoglobin and have fewer circulating red blood cells than normal, which results in mild or severe microcytic anaemia.
This is how doctors define thalassemia, with lots of weird, inflated words which only they can digest. The sanguinary fact is-to some this word defines their life. It is a pallid disease which stays with you right from the moment you open your eyes for the time till you close them for the last time. So its born with you and dies with you. It’s a genetic disease which can be caused due to mutation. Basically, when your would-be mom and dad were having a nice time, and you were busy racing with other little you-s, one of your fellow competitors, acquisitively broke a rule and your genetic code got changed. You obviously won the race but were born with a disease which was as vexatious to handle as it spells – THALASSEMIA.
A thalassemia infected patient’s body is unable to produce Red Blood Cells due to which they need to undergo a blood transfusion every 25 days. It is more obstinate than one can ever imagine. They live life in packets, recharging themselves every month. There are other complications too which affect their overall development.
One such soul is Ben Li, who also suffers from Thalassemia. But he did something that many thought was next to impossible, only till they saw their own belief breaking into pieces. Ben was an ordinary thalassemia patient, refilling his veins with the fluid he was unable to produce for himself.
Ben was a zealous basketball player and a fervent ski too. But the goal he wanted to achieve was beyond anyone’s distant and most whimsical fantasies. He wanted to run the New York Marathon which is a long run of 26 miles. His initial target was not to complete the marathon because he knew he couldn’t when he had a disease to limit himself. He just wanted to give a shot at the NYC marathon.
Ignoring all those vacillant eyes he started his training. He got the best coach he could ever get for himself-himself. He used to run during nights. When everyone else was busy seeing dreams, this steel heart was trying to make them a reality. He practised hard, trying to push his own limits, creating new ones only to break them later.
He was ready to lose all he had to achieve his goal but this was life-it screws you right at the moment you think you’ve figured it out. Just a month before the marathon his right foot got injured due to over practising. But he had been through worse. He had his final blood count check-up before the race.
15th December 2011. The big day when NYC marathon was to be held. Ben Li enters the spot. He will race for the first time. His eyes seem to be overflowing with mingled emotions. There is fear, there is hope, there is excitement, there are scars and above all life- there is life in them. His eyes seem lost, as if in pursuit of something he is about to find. “On your marks”, will he be able to run the marathon he always dreamt of? “Get set”, what if his disease comes in his way? Or the injured right leg? “GO”. He buzzes off like a bird, pushing all the jaundiced thoughts out of his mind. There are wounds on his wings but they are not in the mood to give up until they pierce the limit of the sky today. Ben keeps struggling. Giving up is not an option for him. Not today. He reaches his limits, pushes them to create new ones. His legs hurt but today, he is past all miseries, past all pain. Not the disease that was born with him, not the injured leg, not the pitiful stares from people could stop him. Finally, not only does he complete the NYC marathon, but also finishes running 26.2 miles within less than five hours. The bird has reached the skies, flied past them to discover the new ones.
He won the battle in which he himself was the player, the opponent and the coach. This was a very inspiring event for all those who were suffering from thalassemia and saw it as a big hurdle. He had proved that the disease can be born with you, but it cannot live with you.
When asked about his advice to people with similar disease, this is what he had to say, “My advice for any person with thalassemia who wants to take up long distance running is to go for it! With proper research, training, and focus, you can do the same too. Feel free to ask me for advice!” 10% of world’s thalassemia infected population lies in India.
Sometimes life gives us the sweetest gifts in the hardest cover. So next time if life throws any such unexpected gifts at you, don’t step back, and instead gather the courage to unfold the hard cover. Because ones you will unwrap it, the only thing left in your palms will be the key to unlock all the limits. We often forget that with disparity, the courage to curb it is also born with us. We never notice that darkness is also the best opportunity to create light. Strange, isn’t it?