Saturday, 7 May 2011

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.
I cried together with Aya when she cried. I joined her in her sadness as I helped her to get up whenever she
fell over. And when she became unable to move and had to crawl along the cold corridor, I followed behind her,
crawling at the same pace.
I couldn't take the commendable attitude of never showing my tears in front of the children. Because I
understood Aya's agony and pain very well, I thought that was only a natural way to show myself as a mother.
But from the position of being a grown-up and a parent, I didn't differentiate her from her healthy brothers
and sisters.
Regarding the words 'It can't be helped because she's ill,' I often insisted she should carry out things
properly except those that were really impossible for a disabled person. The difference from the others was
only that she had an extra burden on her shoulders due to her illness. And I had to share that burden.
Aya said that because of that burden her life had gone off the rails. But I bought her various books about
other people's battles against disease. I made her read them, telling her that this was her life, too. I
didn't want her to become narrow-minded, thinking that she was the only unhappy person in the world.
I tried to encourage her by saying, "Aya, you've tried as hard as you could with everything and that really
surprises everyone. I think you've been leading a much more decent life than your mother, who has been living
very nonchalantly without any physical defects. That's why you have friends who still visit you and say
there are a lot of things they can learn from you. That's wonderful!"
I decided to make these words to reply to her question, "What am I living for?" I started to organize her
notebooks which spell out the way she has lived through her life of bitter struggle. Hoping to
produce a book that would provide Aya with some comfort and give her something to live for, I consulted
Dr. Hiroko Yamamoto, Assistant Professor of Fujita Health University. She kindly agreed to cooperate.
Aya herself says, "I haven't lead a decent life that I can tell other people about. I'm embarrassed because
I always cry. It's been a life full of regrets, constantly telling myself I should have done lots of things."