24 February 2009

One litre of tears

Hey Leena, just writing to share something with you.

Have you heard of a Japanese drama series called 'One Litre of Tears'? It's a TV series based on a true story, about a 15 year old girl, Aya Kito, who was diagnosed with a disease called 'spinocerebellar ataxia'. Basically, it's a disease where the cerebellum degenerates over time (how fast this occurs varies between different people), causing sufferers to gradually lose control over their muscles and ability to speak, eventually requiring a wheelchair to move around and finally being bedridden. The cruel thing is, their intellect is unaffected, so sufferers of this disease are aware of how helpless they are becoming as time goes on. They literally become trapped in a prison that is their body.

Aya kept a diary, writing down her thoughts and feelings as she came to terms with her disease. She wrote in it until she could no longer hold a pen. The diary was published as 'One Litre of Tears' before her death at the age of 25.

The J-drama stayed quite true to the real life story despite taking some creative liberties. Yes, the main actress is oh-so beautiful and the whole production has a kind of fake 'professional' feel to it, but despite my misgivings, I cried watching it. There was nothing fake or fictional about Aya's pain and struggle, her courage and determination, and the inspiration that she was to so many people who got to know her story through her book (and now the J-drama series).

Leena, after watching this series, I now have a greater appreciation for the simple fact that I am the master of my own body. To be able to stand properly, to walk and run with ease, to be able to express myself clearly when I talk, to even be able to talk at all! To be able to brush my teeth, cook, clean and feed myself. Aya taught me to be grateful; her curse was my blessing. The physical abilities that I take for granted, she showed me how a cruel, unlucky roll of the genetic dice can rob me of such a precious gift. And yet, her writings show that she had such a strong, brave heart. It saddens me that wisdom came to her at such a terrible price. Would I pay that price? Would you?

I don't really know why I'm telling you all this. I feel that these clumsy words of mine aren't doing justice to the impact that her story has had on me. In some way I'm sensitive to such things. I feel so much that sometimes I wonder if I'm alone in the intensity of my emotions.

In a materialistic world dominated by greed, status-seeking and vanity, it seems so perverse to stress over whether we have the right shoes to go with our designer jeans when there are people who can't even walk, or worry about whether we look 'cool' when there are those whose dignity is tested day after day because they can't control their bodily functions. How often are we thankful that we can piss and shit when we choose to, that the relevant muscles are under our control?

How many girls like Aya Kito will it take to show us that life is so preciously beautiful, and beautifully precious...

Grateful hugs and loving thoughts,



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