So I cried “One litre of tears”

{This was written in a hurry..a quick type out for the purposes of documenting}

We will never know what it would feel like to lose our faculty of speech, our ability to walk on two feet and our energy until we lose them for real. What if we become bed-ridden at the age of 20? We would think, “I never imagined my future to be like this at all.” So few of us think about the possibilities that we could actually lose all that we have in a just a matter of seconds if God wills. Aya Ikeuchi was a normal teenager who was bright; not unusually bright, but she was kind and aspirational and hardworking. One day she found out she had Spinocerebellar Atrophy. A disease that  is incurable. A disease that would take away all the things she had; slowly, she couldn’t walk, or talk. It’s frustrating because her intelligence is unaffected! The fact that she could still think like everyone else saddens me the most.

She was thinking “why me?!”. Exactly. That is exactly what I would ask. Not because I have no faith in God; it’s just that.. to actually be not able to use your limbs, but you are still mentally-functioning is the most pathetic state ever. It really is. She started writing in a journal ever since she found out about her disease. That was when she was 15. Gradually, as the disease began to spread, writing became more difficult and painful because her mind was faster than her hands. Or rather her hands became slower. All her thoughts had to be summarised in the simplest of phrases, suppressing her into a deeper depression because all that wanted to convey has been crippled by her physical disability. Not long after she had to switch from a regular-sized pen to a marker; to help her grip better. And then her handwriting changed. Now it was as if she had to write with her left hand; writing just became harder when her own hands fail. Later she had to write with both hands. And soon she could not even grip her marker or flip the pages. She was only 25 when she died. 10 years of writing. This was the story she gave us. And from this great effort she has put into recording the things that happen to her, along with her feelings, we, as readers are given a lot to think through. This was a real-life story. This actually happened to a girl our age.

Some would think; how did God let her be in pain like that?! Why did He test a girl who was normal and kind her whole life, who never hurt an ant, who had no enemies, why her?

It would be more appropriate to think of how she got through all this. No point dwelling on how God works. See how we humans take it, and learn from them. Immense patience and resilience was required of her, no doubt. This would have been too overwhelming for me, I must admit. I bet it sucked all  her energy. She must have suppressed a hell lot of other things. Since her mental-functioning is still the same, her limbs couldn’t afford to write down all that she would have written down if they worked the same as when she was healthy. So, she must have kept quite a lot to herself, despite the fact that she tried her very best to record important happenings and findings. That must have been painful; it all died with her. I think  I know that feeling. And yet.. yet we are still greatly touched by what she has written down. I was deeply moved. It was beyond infinite degrees of grief, and regret, and sadness and utter anger mixed with frustration.

When she requested to stay in the hospital, her mind was determined to do therapy (walking, balancing) everyday. Of course, she couldn’t understand why her legs just won’t move! It’s not like she’s crippled or anything; her damned legs just wont bloody budge. It was so so sad to watch. And when she tried dialling her home number on the payphone to talk to her family, her fingers just won’t move fast enough- and the card came out because time was out. And there she was, on the wheelchair, crying herself to sleep. At 19, she couldn’t fathom  why her limbs stopped working. She was a basketball player before she fell ill, for God’s sake! Even a simple nose-touching exercise was excruciating for her when her disease began to unveil itself.

It was eating her up. She doesn’t remind me of me. At all. Her way of handling the discomfort and pain was out of this world. She actually fell on her way to the bathroom because she was urgent and her legs just won’t move fast enough. So there she was, on the floor, in a pool of her own pee, and the guy she likes (who also likes her) just had to come at that time to look at her in such a pathetic situation. I cried like mad at this re-enactment of the scene.

I wailed, to be honest. Like how Buddhists mourn for the dead? Yes, I bawled my eyeballs out, screaming that it was just so unfair. I cried for 10 hours. It was 10 long hours, watching “One Litre of Tears”. This is a movie (based on the journals of Aya-Chan) that changed my life. It turned my whole universe around.

I thank you, O Allah for not letting this happen to me or anyone I know I know personally. Please keep all of us healthy and fit. Help us use this body in the best of ways possible. Ameen.

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