Little Aya's admission to the hospital
Aya stayed in Ward 4A at Nagoya University Hospital. She was very popular with the nurses. Although she was a high school student, her childlike face gave her an angelic look. She obediently followed everyone's
instructions, hoping to get better, even if only a little. She planned and practiced various exercises for
her hands and legs. It was impossible not to be fond of her. The new remedy had a slight effect, but it
didn't reduce her daily inconveniences. The nurses complained to me, saying "Dr. Yamamoto, Little Aya is
working so hard. Why can't you do something to help her?" I felt a loss.
Around that time, word was going around that the professor at the hospital was an authority on spinocerebellar degeneration. Many patients came to our hospital from all over the country. Aya and U-kun, a boy one year younger than her, were young and cheerful patients. But some of the patients were bedridden, only getting up to go to the toilet in a wheelchair. Sharp-eyed Aya mentioned the names of the seriously ill patients to me and asked, "Will I be like them soon?"
I knew Aya had various dreams for her future. During my rounds, she would carefully check my reactions as
she told me about them. I had begun feeling that it was about time to tell her properly about her disease.
So I answered, "It will be a long time from now, Little Aya, but yes, you'll be like that eventually."
I explained to her in detail what would happen to her as time passed: her swaying would gradually increase;
eventually, it would be difficult to walk; her speak would become unclear and would not be understood;
and writing and using her hands for any kind of handiwork would become difficult.
For several days after that, she was very depressed. But soon she started asking me positive questions
again: "Dr. Yamamoto how much longer will I be able to walk?" or "Do you think I could manage this kind
of work?" I felt sorry for her, but I thought it was good that I had explained everything.
In fact, after that, our mental bond became stronger. We could talk openly about the very serious symptoms
of the disease, and knowing in advance what would come next made it easier to decide what to do next.
Her stay at the hospital that time couldn't do much to improve her condition. However, I believe she left
the hospital understanding what was most important for the long life under medical treatment that she would
have to face.
Changing to a school for the handicapped
Aya's high school requested that she leave the school because she was causing trouble for the whole class.
It was just what we had feared would happen. Bitterly disappointed, Aya's mother told me that her classmates were helping her go up and down the stairs when she moved to another classroom and saying. "It's no trouble, Aya!" We'll help you in the same way in the future."
I felt brighter when I heard that her classmates were supporting her.
Her mother told me that she was going to ask the school to let her daughter stay.
"If the teachers have any questions about Little Aya's disease," I said to her, "I'll be happy to explain.
Or I could go with you to the school."
But her mother replied that she would prefer to go by herself. She went to the school many times, despite
her busy work schedule, and made a strong appeal to the school authorities for Aya to stay there. In the
end, however, it was decided that Aya would move to a school for the handicapped. The grounds of that school are designed so that the students can freely move around in wheelchairs. It also has a rehabilitation
facility where they can study while having treatment. But I think it was a big shock for Aya's mother who,
supported by many of Aya's classmates, had been fighting against the move. When she told me in a sad voice
that Aya was going to move, I felt a lump in my throat.
I suppose that the high school administrators did not know how to deal with Aya. Their conclusion was that
if there was a school designed for children like her, why shouldn't Aya go there? But I wonder if causing
trouble was the only effect Aya had on the school. From what I heard, the desire to care for a disabled
friend was emerging very naturally among her classmates. They could learn a lot from the serious attitude
of a friend who was trying so hard to live. I was very disappointed with those evolved in her education.
They didn't even inquire about er disease. They just did things by the book. Today, the issue of bullying
is talked about a great deal, but I believe there was no hint of a dark shadow over Aya's classmates.
Much later, when Aya entered the hospital again, I remember her saying to me happily, "Please give me
permission to go out because I'm going to meet my high school friends."