By Van Ngoc Nguyen
NORTHAMPTON, Mass., U.S.A. – In all my book-gnawing journeys, I had yet to experience a sense of engrossing awe in letters and words – that one true epiphany when I saw myself and my life encompassed in the thoughts of others – the moment of total empathy when the reader and the author connect intuitively across time and space.
That is, until I came across One Liter of Tears by Aya Kito.
The book is an edited version of a Japanese girl’s series of diaries, published in 1986 by her family as a way to share her story with the world. Aya suffered severely from Spinocerebellar Atrophy, a terminal motor function deterioration that eventually left her unable to move any parts of her body. Her diary spans from when she was a relatively healthy 14-year-old to the point of final thoughts in her 21st year, telling her daily struggle to eat, sleep, walk, study and even find the will to live.
I felt sad to witness the degradation of a lovely girl’s life. The milestones took more and more out of her life: legs started to fail, hands started to shake, her back started to bend and her mouth stopped talking.
But Aya’s spirit of optimism was always abound. She tried to talk, to keep on writing her diaries, and practiced simple sentences. I could feel her pain in every loss, in every teardrop, in every small moment when she told herself, “Everything will be okay again.”
We all have our “down” phases. For Aya, it meant the death of her soul if she could not think better of herself.
Aya’s struggle was not to prolong life, but to live it to the fullest in honor of those who had helped her – her parents, her siblings, her teachers, her fellow classmates and friends, and even her dedicated doctors. She told readers to get up after falling, to look up at the sky overhead, to see that there is more to life than oneself. She told them to learn to live not just for the sake of existing, but also for others, because to be alive means to look elsewhere, see and feel the things that cannot come from you alone.
Surprises go a long way in reading, and for One Liter of Tears, the experience was much richer than I expected.
I anticipated a tearful tragedy with a light-hearted ending, but there was none. I waited for some advice on how to love yourself in times of illness, but there was none. What I found was the way to see life: to be human is not to set ourselves apart, not just for survival, but rather to enrich others’ lives in hope and willpower, to help them in the ways they have helped you, or at least to try to do those things.
Aya’s life is not her own to keep, and neither is mine. At the expense of a life of suffering, Aya helped millions of people see life the way she did, and that is an extraordinarily beautiful thing to do. Perhaps reading her book means more than understanding her life; it is about leading her life into ours.
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