1 Liter of Tears (Ichi Litre No Namida)

Afterword

by Shioka Kito (Aya's mother)

When we went to Nagoya University Hospital for a consultation, the doctor told us the name of Aya's disease.

He explained to us how her physical abilities would gradually be lost as the disease progressed and that there

was no cure. Like any parent, I prayed that at least my child would turn out to be an exception, that the

progress of the disease would stop where it was, and that some kind of miracle would happen.

My daughter believed absolutely that she would be cured. I was very confused and I found it hard to come to

terms with the situation. As her parents, how should we look after her? I realized that we would have to face

our future firmly, walking together with her and supporting her as a solid pillar.

Some people who acquire a partial disability, such as the loss of an arm or a leg, can use their other healthy

parts to compensate. But in the case of spinocerebellar degeneration, the patients whole body loses its

locomotive power. All the large motor functions, such as sitting and walking, are gradually lost; so, too,

are the fine motor functions, such as writing and using chopsticks. The whole process requires a long battle

against the handicap. And the tactics have to changed according to the patients condition.

Constantly threatened by the progress of her disease and under the pressure of anxiety and fear, Aya refused

to accept the inevitable or to give up. She continued to make an effort. But finally she became bedridden.

Today she can hardly speak and cannot even wipe away her tears. I wonder what ond how she thinks about herself inside her clear brain? But there is no way to understand that now. She has been deprived of the ability even to express her feelings.

In the sixth year of her illness, when she became unable to cope with daily life by herself, she wrote "What

am I living for?" in her notebook (page 162). She asked me the same question. She had tried so hard to keep

going and had fought as hard as she could. But the end result was that her life was moving ever further away

from the life she wanted to live. She seemed to be reproaching herself, saying "My life is worthless," "I have

nothing to live for," and "I'm just a burden."

She never did or said anything to criticize others, such as "Why is it only me who has become like this?" or

"I wish you had never had me." That made it all the more difficult for me to answer her.

The major events in her life - such as the outbreak of her illness, her move from Toyohashi Higashi High School to Aichi Prefectural Okazaki High School for the Physically Changed, her graduation, when she became unable to walk, and finding a caregiver - were always obstructed in some way. That made Aya depressed.

We groped along digging in a pitch-dark tunnel together as we tried to heal her bloody, damaged body. But then

we found we had to face another obstacle. We have come this far, somehow or other, hoping to find a brighter

path where we could say: "Oh, this is what we've been looking for!" But the reality of the terminal station

we have now reached has turned out to be too cruel.