Recently, I chanced upon a Japanese drama called 1 Litre of Tears or 1 Litre no Namida and the aftermath was a heightened interest in neurology and human emotions.
The drama is based on the real diary of Aya Kitō, a fifteen year old Japanese girl diagnosed with spinocerebellar ataxia. The drama follows her life from being a high school student, her gradual loss of physical function and the struggles with it; all these while her mind is unaffected. Her mind could feel and understand everything but her body slowly stopped obeying.
The Disorder Behind the Story
Spinocerebellar ataxia is a group of rare, progressive, neurodegenerative genetic disorder causing loss of balance, coordination, and muscle control. Mostly autosomal dominant and it affects the cerebellum, the part of brain responsible for coordinating movements, balance and fine motor control. There is no cure for it.
Symptoms usually appears after age 18 and slowly worsens over several years. Symptoms ranges from involuntary eye movements, slurred speech, problems with balance and coordination, uncoordinated limb movements to inability to do basic functions. Sadly, premature death occurs in many cases.
I found Aya’s story very devastating as her cognitive function remains wholly preserved while her body deteriorated. She continued writing on her diary till she could no longer hold a pen. Her last diary entry was “I want to keep on living.”
Why the Story Matters
Stories like Aya’s remind us the sheer dedication and determination of disadvantaged people to strive to live on and give hope to others who are suffering from the same or other terminal condition.
She passed away at twenty five, few months short of her 26th birthday due to debilitating effects of progressive spinocerebellar ataxia and the ensuing uremia due to organ failure. Her body was donated for medical research. Her diary was published and later became one of Japan’s most read books.
In the year 2011, Professor Hirokazu Hirai (neurophysiology) of Gunma University announced that they had elucidated part of the mechanism by which spinocerebellar degeneration develops, through experiments with mice.
Hope you can spare some of your precious time to watch this wonderful drama. Have you watched any other Asian drama related to healthcare ?
MBH/PS