Chapter 4 - "I can't even sing anymore . . ." IV

Chapter 4 - "I can't even sing anymore . . ." IV

Asking My Self Some Questions

The summer holiday will soon be over. The only thing I've completed successfully during the holiday was looking after the parakeets. They come out on to my hands or shoulders and wait while their cage is cleaned. I give them some new water and feed, Then I put them back through the small door into the cage one by one. They;re so cute, They sometimes peck me, but it's not painful. I'm sure they're saying "Thank you"and I say, "You're welcome. I'm happy as long as you are happy." The whole thing takes about an hour as I talk to them. I get sweaty doing it, because I have to close all the windows so that they can't fly away . . .

Self-Reflection (Q&A)

"Aya, why don't you study much?"
-"I don't know"
"Don't you feel sorry for your parents who work so hard?"
-"Yes, I do. But I can't study"
"You're spoiled, yo know! Look at the outside world. There are many people out there who are trying very hard on their own. In fact, one year ago, you were . . ."
-"Don't say any more! After Motoko-sensei told me that life is not all study, I began getting lost."

So, after all, I have to face the end of the summer holiday without having done anything much at all. I'm scared about starting the new term!

I'm the one who's most aware of the changes (for the worse) in my condition. However, I don;t know if they;re getting only temporary or they mean I'm gradually getting worse.

I explained the changes to Dr. Yamamoto:

1. The movement of my hip joints is bad. They still move back and forth to a certain extent, but they will hardly open to the left or right. (I can't move my legs like a crab). And because my Achilles tendon is hard, it interferes with my efforts to move my legs forward.
2. It's getting difficult for me to pronounce the ba and ma columns of the kana syllabary.

Dr. Yamamoto encouraged me by saying that these things will get better, depending on how much I practice. She added that she;d give me some white tables to help soften my tendons.

I wanted to ask th truth about my disease, but of course I'm scared to know. I don't have to know that. It'll be all right as long as I can live know as well as I can.

"Aya," said Mom in a spirited way as we were going home in the car, "you changed to Okayo because you couldn't continue your life at Higashi High School. You're quite a serious case even there. You may be feeling you're not accepted at Okayo, either, and gradually start shrinking with fear. But don't worry. You received the gift of life. And you'll always have a place to live. If you have to spend your life at home, we'll refurbish your room for you so that it's nice and warm and bright with lots of sunshine."
I think Mom wanted to cheer me up because I was looking so miserable.
"It's not like that, Mom, I'm only thinking about how I should live today. I'm not looking for an easy place to live."
That's what I was shouting in my heart.

I went to the washroom to wash my crying face and looked at myself in the mirror.
"What a lifeless face I have!"
I remember saying to my sister in a cool kind of way that I could find some charm in my face even though it was ugly. But I couldn't say that with the face I have now.The few facial expressions I have left include crying, grinning, a serious look, and a sulky face. I can't keep up a vivid and bright expression even for an hour.

I can't even sing any more. The muscles around my mouth have a kind of tic. And because of the decrease in the strength of my abdominal muscles, I can only whisper like a mosquito.

I've been talking the white tables every day for one week now. My talking tempo has speeded up a bit and it's become easier to swallow food. The tension in my right leg has been eased slightly. However, I still have difficulty moving my legs forward and they're still painful.

Chapter 4 - "I can't even sing anymore . . ." V

Chapter 4 - "I can't even sing anymore . . ." V

Autumnal Events

The School Festival

Mom and my sisters came. Mom said she was in tears watching I-sensei dance on the stage.
"How come?" I asked.


"Maybe it was because she looked like she was trying so hard. At an ordinary high school, only the students perform, don't they? I was moved by a teacher performing earnestly together with the students. I think that's why my tears welled up. And there was also that boy who played monkey and walked around like someone suffering from cerebral palsy. But in fact he can't help but walk like that. Maybe because it was a perfect role for him ,everyone laughed. That made me cry even more."
It struck me then that I inherited my crybaby side from Mom.
"But Mom," I replied, "around April, when I saw S-chan falling over and laughing, I thought she was superhuman. I wondered if I could ever become that strong. But these days even I can laugh when I fall over. I think everyone laughed when they saw that boy's monkey costume rather than that at the way he walked.

The Undokai Athletic Meet

I never imagined a school for the handicapped would have an athletic meet. I was wondering how the students could possibly all parade around if they couldn't walk . . . (I totally forgot that some people can walk, and there are also wheelchairs.) There was a real sense of fulfillment in completing something by helping and cooperating with each other and by contributing things that were lacking.

The students in serious condition produced a creative dance performance themselves. When it was time for the autumn leaves to fall, stupid me got the wrong group and dropped them! However, I was dancing as hard as I could, just like a butterfly (at least in my heart . . .)

Because we were all serious cases, I thought it would be impossible to present a beautiful performance. But I was surprised when I watched the video in the library. What a beautiful show we put on! We can do it if we try.

One strong impression that remains was glancing up and seeing the fresh blue of the sky while I was dancing.

I think the biggest difference between this and the athletic meet I had at Higashi High is that I have changed from being an outsider to being someone who's involved. And I've changed my mind: now I realize that if I try hard enough I can do some of the things I thought I could never possibly do because of my serious condition.

The teachers encouraged me. They said things like, "Aya, you can do it if you try! The performance will be great," and "The dance warmed up thanks to you dropping the leaves!"

Dr. Yamamoto said a similar thing: "Little Aya, I think something in your mind has started changing because you're now aware that you're someone who's involved."

Suzuki-sensei came back from his long-term study and training course. He told me what he had studied while staying with children who have severe physical handicaps.
"Some are 10 years old, but their mental age is still the same as a one-year-old baby, so they won't respond to anything. They'll put anything in their mouth, even a stone or a lump of mud . . . Looking at those children, I realized there must be some kind of guidance suitable for babies. The point is we have to make endless efforts and have good techniques to give the appropriate guidance to each individual. Everyone's trying hard-those with a severe physical handicap, the teachers who guide them, and you and me, Aya. So, let's keep at it, shall we?"

Listening to his words, I felt rather ashamed and ungrateful. Up to now, I thought that I wouldn't be in so much pain if my intelligence's proportion to the inconvenience of my body . . .

When I was an elementary school student, I wanted to become a doctor. When I was a junior high school student, I thought of going to a university with a welfare faculty. Then when I was a student at Higashi High, I started thinking it would be nice to go on to a literature faculty. But even though I have changed my mind a lot, I have consistently had the feeling that I want to do some kind of work that is useful to other people.

I don't have any specific goals right now, but I wonder if I could provide meals or something like that for children who can't move? I'd like to help them understand the warmth of people by holding their hands. I wonder if I can at least be some use to someone?

A long time ago, Atchan said to me, "It might have been better if I wasn't born." I was so amazed to hear that. It was a comforting surprise because it blew away all the disgusting things that were deposited at the bottom of my heart along with many sighs. I had thought the same thing many times. But knowing that a child who can't even move doesn't have the chance to think that, I couldn't help feeling really sorry.

I can no longer return to my past. My mind and body are exhausted like a piece of old cotton cloth. Please help me, teachers!

I was tired out from crying, but I managed to answer a calculation table for commercial bookkeeping. My answer matched perfectly! I'm so happy. But it took me well over 55 minutes-that's not so good.

Chapter 4 - "I can't even sing anymore . . ." VI

Chapter 4 - "I can't even sing anymore . . ." VI

The Year End

I wrote my New Year's cards. I only knew a few of the postal codes-including 440 (for Toyohashi City) and two or three others. I came across various codes this year, partly because I got to know my teachers and friends at Tokayo. Japan is a huge country.

Everyone's busy doing the year-end cleaning, rice-cake making and shopping. What should I do?
"Aya, you're in good condition, aren't you?" Said Mom.
"Can you wipe the floor?"
"Sure"
Mom squeezed the wet rags for me and then placed them on the floor a certain distance apart.

I'm losing my excitement about the New Year. Why can't I feel refreshed and think about some New Year's resolutions? I cried out loud, feeling that I've gotten stuck somehow. My stock keeps falling.

A teacher at Higashi High once said, "What's important for solving a problem about modern Japanese is to grasp what the question is asking and follow it with an open mind. To become open-minded, you shouldn't have any preconceptions. For that purpose, you must read a lot of books. The more you read, the less you will have preconceptions."

Yes, I will read a lot of books and associate with the many characters in them. I've just realized that consideration for others and their feelings is also fostered through reading. From time to time, I stop talking when I decide I can't be understood however much I try. Too many times I've regretted that later, thinking that I should have done something different. That's why I keep getting depressed.

I decided to write my first calligraphy of the year. I took out a new thin writing brush and rubbed down an ink stick. It's difficult to do calligraphy without a model. Life without a mode is even more difficult.

After practicing for a while, I wrote a good copy: the character sunao (meek).

Chapter 4 - "I Can't Even Sing Anymore . . ." VII

Chapter 4 - "I Can't Even Sing Anymore . . ." VII

A Speech Disorder

I'm having difficulty pronouncing the ma, wa and ba columns of the kana syllabary, and also the syllable n. During the chemistry class, I was called on to reply. I knew the answer was mainasu (minus) but I couldn't pronounce it. My mouth can form the correct shape, but I can't utter a sound. Only air comes out. That's why I can't make my self understood.

These days, I often talk to myself. Up to now, I didn't like doing that because I thought it made me sound stupid, but I think I'll try more now. It's good for practice for my mouth. Whether there's anyone else there or not, I'm speaking . . .

I thought of running as a candidate for the position of Secretary of the Student Council. I entered the same race when I was in the fifth grade at elementary school. There'll be a public debate between the candidates, so I must do some speech training. Ah, there are so many things to do, including training and studying. I'm up to my neck in it. Good grief!

I remember having a big fight with one of my classmates during those elementary school days. One day, I went for a walk to the square with my dog Kuma. My classmate was there with her elder brother and their dog. The fight started because she set her dog on Kuma.
"Why did you do that?" I asked her.
"Because my brother told me to do it," she replied.
I got really mad and said, "So would you commit murder without a second thought if your brother told you to do it? He isn't always right, is he?" (It's the kind of logic I learned from Mom.)

But she wouldn't stop her dog. Then a big fight between us humans broke out. It was so fierce! It was so intense! I didn't stop even when my head was pushed into a ditch. My younger brother and sister backed me up.

Yes, with such power and such a sense of justice, Aya should definitely run for a position on the Student Council.

My speech disorder is becoming more conspicuous. When it comes to conversation, both parties now need lots of time and patience. I can't say, "Er, excuse me . . ." while trying to pass someone. I can't have a proper conversation unless both the person I'm trying to talk to and I prepare ourselves for listening and talking. I can't even express moments of pleasure by saying things like "The sky is beautiful. The clouds look like ice cream."
I get very frustrated.
I get annoyed.
I feel miserable.
I feel sad.
And, in the end, tears fall from my eyes.

Chapter 4 - "I Can't Even Sing Anymore . . ." VIII

Chapter 4 - "I Can't Even Sing Anymore . . ." VIII

Frustration

One of the teachers stopped me today and said, "Aya, are you feeling frustrated?"
I went speechless. I suppose they must have concluded that from my questions, my essays, my drawings, etc. But damn it! How could they dismiss what's inside my heart simply as frustration?

From having a healthy body, I've turned into a disabled person and my life has greatly changed because of that. What's more, my disease is still advancing. Now I'm fighting against my self. I can't have any sense of satisfaction while I'm fighting. As I go through all this worrying I know everything won't be solved by asking someone to listen to me, but I just want them to try and understand how I feel, and support me, even if only a little. That's why I consult Suzuki-sensei, showing him my notebook that includes all my thoughts and worries. other teachers tell me that I should try to digest them inside my self. But I can't stand or even move because the load on my shoulders is too heavy.

"Do I look like a girl representing Frustration Incarnate?" I asked Mom.
"Everyone suffers from frustration," she answered. "It's better to be brave and say whatever you think on the spot. If you worry too much later about what was said to you, or the things that you did, they'll think you're always concerned about something/"
I know I don't respond quickly. I sometimes don't even admit to my self that I'm disabled. I'm in the depths of despair. But, strangely, I don't feel like dying, because I feel a time of fun will come some day in the future . . .

Jesus Christ said that living in this world is a divine test. Did he mean that while you're leaving you should be looking at yourself after death . . . ? I must read the Bible.

Chapter 4 - "I Can't Even Sing Anymore . . ." IX

Chapter 4 - "I Can't Even Sing Anymore . . ." IX

Meals

I can no longer use chopsticks very well. My right thumb doesn't stretch enough and the other fingers get stiff and won't move, so I can't hold things between my chopsticks. The way I eat now has evolved naturally. I've mastered my own way of eating.

The menu for this evening included rice, fried prawns, macaroni salad and soup. first of all, I threw the macaroni salad on to the rice. I do that with all the fine, small stuff. I can manage to hold a fried prawn because it's big, but I'm not particularly good with noodles (although I love udon).

I have to be careful about swallowing. I often choke, so i have to transport the food with good timing, move my mouht in a certain rhythm, hold my breath, and then swallow.

Chika, my classmate, can't use her left hand well, so she brings her mouth close to the container to eat. Teru-chan puts everything, such as the rice, the side dishes, and the ingredients of the miso soup on to her plate to eat them. I'm somewhere in between them. I can use my left hand, so I can hold a bowl. That means I can pretend to look like an ordinary person.

A long time ago, I read a book written by Kenji Suzuki, the TV announcer. In it he said that when two handicapped persons meet an 'arranged marriage' meeting, the first thing they should do is reveal their weaknesses. Is my way of eating a weakness?
"Am I conspicuous because I'm so slow?" I asked the head matron.
"Rather than saying that," she answered, "I feel sorry for you."
It was a rather shocking remark.
I feel sorry that again at Okayo I have to have other people doing everything for me. Handicapped people are classified into two categories: serious cases and light cases. I'm classified as a serious case.

Chapter 4 - "I Can't Even Sing Anymore . . ." X

Chapter 4 - "I Can't Even Sing Anymore . . ." X

March

Congratulations to Ako and Hiroki for graduating from junior high school. Now you have to face the high school entrance exams. Good luck!

Feeling like going out into the fields
To pick the fertile horsetail shoots.

The spring rain silently drizzles down.

This spring brings only loneliness.

I'm really concerned about my future. I've already turned my back on my life without being aware of it. What's happened to my hopes for the future? I can no longer think seriously about what I want to be in the future. Let it be. The waves of my fate have washed me away. I don't even know what kind of occupations left for me.
"There'll be another year," says Mom.
"I only have one year," I think.
I don't knowhow to bridge this gap in our way of thinking anymore.

The students who come to school every day from Aoi Tori Gakuen Medical Welfare Center - and those who have been living in the dormitory since they were young - are different to me. They don't have any hesitations and they seem to live their lives very smoothly.
"We don't mind a cheat, but at least be punctual!"
Because I'm always slow and late, R-sensei and the head matron tell me the same thing. But take the cleaning, for example: I'm slow, but I still want to do the cleaning properly. I can't cheat like that . . .

Matron I is very kind. She envelops me in a mother-like love. I like her very much because she makes me feel relaxed. She says she can't sleep well at night, so I think I'll give her a stuffed animal. Matron Y is the one who always hurries me along, repeating that I'm slow. But she watched me quietly the other day for about 10 minutes when I was crossing the 3-meter-wide corridor at the dormitory. Their kindness differs in quality.

I overheard mom talking to one of the matrons:
"I'll Aya with me when I die."
I didn't know she was thinking that deeply. I realized that was a mother's love.

I forgot to push button to start charging the Machine (my electric wheelchair), so it ceased to be a machine. I was in trouble. I pushed it up the slope with all my energy. I had a pain around my lower back. I took a brief break on the connecting corridor on the second floor. I could see something small moving on the hillside when I looked down at the ground. It was a puppy. It looked lonely.

Just then a teacher passed by. "Ah, dogs like nice scenery, too!"

It struck me then that the feelings you have toward something that doesn't speak vary depending on the person or your mood at that time.

What should I do after graduation? In the past two years, my disease has become much worse. mom says I should concentrate on getting thorough treatment by consulting Dr. Yamamoto. It's no longer a matter of whether I can motivate myself or not. It's not a time for expecting encouragement, either. I just have to carry on.

I put my feet under the kotatsu heated table and ate some snacks. Ako had left for me. "Keep it up, Aya!" she said to me.

Recently I've been feeling something strange. Sometimes my vision gets blurry and my brain starts to reel. The shape of my right foot has also changed. The joint of my big toe is protruding and the other toes are kind of flat. I feel disgusted thinking that this is my foot. Now I'm 149 centimeters tall and weigh 36 kilograms. I hope my foot won;t lose the strength to support my body.
Do you hear me, ugly foot?
"I'm getting worse and I can't walk any more," I said to matron G when she was helping me charge my wheel-chair. "There was a time when my disease was at a mild stage and I could walk. In that state, I could have taken care of the others at the dormitory. But I came here after I'd become quite helpless, and now other people have to help me. I really feel sorry about that . . ."

Toward the end, it was difficult to get the words out properly, but I managed not to cry.

Mom was crying.
"It was your fate that you got ill, and it was also our fate as parents to have a child like you. Aya, I'm sure you are having a hard time, but we're having an even harder time. So don't get sloppy about trivial things. You must live strongly!"

When I was going back to the dormitory to change my clothes and get ready for the PE lesson, some phlegm got stuck in my throat. I almost choked to death. I can't get any abdominal pressure and I don;t have much lung capacity, so I couldn't get rid of it. It was very painful. I definitely feel I'll die one day because of some trifling little thing like that.

Chapter 4 - "I Can't Even Sing Anymore . . ." XI

Chapter 4 - "I Can't Even Sing Anymore . . ." XI

A Third Grade High School Student

Thinking that my boarding school life will soon be coming to an end, I poked my nose into the Executive Committee to excess this year. I also worked hard for the Christmas party, eager to entertain everyone. I was so busy. But I was satisfied with myself this year because I did various activities for the sake of other people.

"I won;t let little things defeat me," said Mom, "so, Aya, you, too, will have to hang on for a prolonged war."

I was ashamed of myself for only thinking of the present. Spring will soon be over, As I put my hand out of the car window to catch the flower petals fluttering around, I could feel Mom's deep love. That gave me some peace of mind.

I'm more scared when I get up in the morning than when I go to sleep on my own. It takes me about an hour to fold up my futon and put on my uniform, another half an hour to go to the toilet, and then 40 minutes to eat breakfast. When my body isn't moving smoothly, it takes even longer. I don't even have time to look up at someone's face and say, 'Good morning.' I tend to look down all the time. This morning, I fell over again and got a nasty bang on my chin. I checked to see if it was bleeding. It wasn't, so I felt relieved. But I know that in several days I'l start feeling some pain, with bruises on my shoulders and arms.

I lost my center of balance in the bathtub and sank down bubbling into the water. Strangely, I didn't feel I might die. However, I saw a transparent world. I guess Heaven is like that . . .

I put my hand on my chest.

I can feel my heart beating.

My heart is working.

I'm pleased. I'm still alive!

The gums above my right front teeth are swollen. The nerves have died agian.

I went with the disabled group on an overnight trip. Many volunteers came along to look after us. Like a three-year-old infant in the rebellious phase, I had to keep saying, "I can do this by myselfm so I'll do it!" That stung my conscience. Etsuyo eats her food lying down. A girl who was passying by looked at her with a funny expression on her face. I'm glad I can eat sitting up. I began to think that we disabled people are all the same really, although our disabilities take different forms.

Rika, my four-year-old sister, was with us. She said a cruel thing:

"You aren't beautiful, Aya, you know, because you wobble."

I spouted out my tea involuntarily when I heard that. Young children are cruel because they say things in a straightforward way without considering whether someone may be hurt by what they say.

Chapter 4 - "I Can't Even Sing Anymore . . ." XII

Chapter 4 - "I Can't Even Sing Anymore . . ." XII

The School Excursion

I was thinking it would be very difficult for me to go on the school excursion. But it seems I can go after all. Mom will come with me and Dad will look after the house.

A Record of My Impressions
Pigeons and me: Hiroshima Peace Memorial Park

"Po-po-po" and "Kuru-kuru" the pigeons were cooing. At first they didn't come close to me (I think they were afraid of the wheelchair.) But when I held out some bird food, they came and perched on my shoulders, my arms, and my head. It struck me that both the pigeons and the people who dropped the bomb were very calculating types.

I went round the Peace Memorial Museum a few minutes ago. It was dark inside. Only the exhibits are brightly lit, so it's filled with a weird and heave kind of atmosphere. There's a model on display showing the time of the bombing. A mother and a child in tattered clothes were escaping from something holding hands. All around them was red with fire. It was the same color as the blood plasmawhich oozes out after I fall over and cute myself.

"It's revolting!" Mom muttered behind me. She turned her face aside and said, "I shouldn't say that, should I? I should say 'I feel sorry for them,' because they didn't want to be like that."

I didn't think it was revolting. That was not everything about the bombing. That was not everything about the war. A simple child like me, who doesn't know anything about war, was pretending to be tough like that.

On display were the cranes folded by Sadako, who died of A-bomb sickness. They were made using a kind of transparent red wax paper.

I don't want to die! I want to live!
I felt as if I could hear Sadako's cries. But, what kind of disease is A-bomb sickness? There are people who still suffer from it after 35 years, so is it hereditary disease? I asked Mom, but she didn't know exactly.

There was a stuffed horse with keloids, tiles burned by heat rays, 1.8 litre sake bottles melted into limp shapes, some scorched black rice in an aluminum lunchbox, battered clothes people wore during the War, etc.

The reality of it all puts a merciless pressure on you. We didn't experience the War. But we can't turn away and pretend we don't know anything about it. Whether we like it or not, we have to admit that many people were killed by the bombing in Hiroshima, Japan. I think the best memorial for those who died is to vow that we will never let such a tragedy happen again.

After a while, I realized there were some elementary school children from Hiroshima inside the Museum. There were looking at the exhibits and me in my wheelchair with the same expression, as if they were looking at something horrible. I thought I shouldn't be concerned about other people's eyes.
"Perhaps a wheelchair and a wheelchair rider are unusual things to them."
Thinking like that, I could concentrate on the exhibits.

Suzuki-sensei callewd us and we went downstairs. I felt relieved to escape from the uncomfortable eyes and the heavy atmosphere.

Outside it had started drizzling. Mom tried to put a raincoat on me as I sat in my wheelchair. I tried to stop her, saying, "That's not cool." But nobody was saying anything, so I reluctantly did what she said. She placed a towel on my head as well.

The fresh greenery in the park was nice. The trees were all wet from the rain. They were shining under the cloudy sky. The fresh yellow-green leaves of the camphor trees looked beautiful against their black trunks. I wanted to sketch them.

We went deeper into the green trees and came to the Peace Bell. The rounded roof supported by four pillars represents the Universe. The dying lotus leaves in the pond surrounding the bell also seem to have a history.
"Anyone who wants to ring the bell, come over here," said one of the teachers.
I glanced over. Terada-san and Kasuya-kun rang it.

DONG . . . DONG . . .

The sound faded away into the distance with a lingering resonance.
"I'm listening to the sound of this bell wishing for 'peace' so I should do whatever I can, even though I won't ring the bell."
Thinking like that I closed my eyes and prayed.

Because of the rain, the water in the Ohta River was the color of earth. After the bomb was dropped, it was filled with wounded people. They were crying, "It's so hot, so hot!" Imagining the scene in my head was scarier than looking at the exhibits in the museum.

The pigeons came and perched on my shoulders and arms one after another. Their feet were soft and warm. They flocked around me pecking at the feed I was holding. There were loads of them. They're feral pigeons, so they're not particularly beautiful. I found one with bad legs. It was walking even though it was disabled one. I obstinately tried to feed only the disabled one. But I couldn't do it very well. There are so many pigeons in the park, I suppose it's only seriously disabled and couldn't walk, like me, perhaps it couldn't live. It struck me that I should be grateful that I was born as a person and can therefore stay alive.

Am I wishing for 'peace' because I'm person who can only live in a 'peaceful' world? That's a rather shameful wish.

After a while, I also felt like giving a piece of bird food to the other pigeons, not just to the one with bad legs. As I looked at the pigeons with their tottering steps picking up the feed, I thought about the sense of 'welfare' that we have in our human world.

Chapter 5 18 Years Old (1980-81) - Having Understood The Truth

Chapter 5 18 Years Old (1980-81) - Having Understood The Truth

I had rather a big shock today. Here's the conversation I had with four-year-old Rika:

"Aya, I want to be wobbly like you."
"But then you couldn't walk or run, and you'd find it boring," I replied, as cool as a cucumber. "We've had enough of this problem with me."
"All right,I don't want it, then," she said immediately.
This happened in the entrance hall. Mom was some-where in the house. I wonder what she thought when she overheard us?

Final High School Summer Holiday

I took a bath in the morning (to make my body more supple). Mom was busily moving around saying how hot it was. I felt sorry for her because I didn't feel hot at all, so I worked on math calculations until I was sweating.

After lunch, I got a toothache. I took advantage of being at home to cry.
"How old are you?" Said my brother. That's a favorite remark of his. He put some ice in a plastic bag for me. That cooled my cheek and I slept for two hours feeling comfortable.

When Mom came home, she applied some Shin Konjisui painkiller to my tooth. Then I played gomoku with my brother. He beat me, 8 games to 2. Ako comes home late because of her part-time work. At my request, we had cold tofu and sashimi for dinner.

In the evening, I fell down again. As I was standing up to switch off the bedroom light, I fell down . . . SLAP-BANG. I made a terrible noise and Mom came flying in.
"What happened? Aya, you have to use your brain and build on the things you've learned up to now. If you keep falling down like this, I won't even be able to go out to work with an easy mind."
As she was saying this, she attatched a long string to the chain hanging from the light. I must be more careful about what I do late at night.

I cleaned my room enthusiastically, thinking "Today's the day!" I was moving around on my knees, so the vacuum cleaner didn't suck up the dust very well. But I worked desperately at it. I felt so good afterwards.

Keiko came to visit me.

Like Aquatic plants
Floating on a pond,
Talking with my friend,
Just looking at each other,
About our innermost feelings.
My friend with her sparkling eyes
Tells me about her dreams.

Keiko talked a long about her future dreams. I felt this was how we would become adults.

Tomorrow's the day for me to enter the hospital again.

Chapter 5 - Having Understood The Truth II

Chapter 5 - Having Understood The Truth II

Second Hospital Stay

(Nagoya Health University Hospital)

This time, the main tasks will be checking the progress of my disease, having injections of a new medicine, and undergoing rehabilitation. The difference from the previous stay is that I've been asked not to go out alone (because of the danger of falling down).

When I went to the toilet, I glanced outside over the window-sill. I felt depressed when I saw the gray walls and black buildings.

"Why do you look so tired?" asked the nurse who was accompanying me.

My nystagmus (involuntary movement of the eyeballs to left and righ

t) is becoming more conspicuous these days. I had an eye check in the room for brain wave tests. The doctor there has a bad leg, too. It struck me that I could work if only I had at least one part of my body that functioned properly.

"Why are you putting that cream on?" I asked.

"Because you're having checkup," the doctor replied.

That answer struck me as a bit off the mark. I wonder if he responds like that to ordinary people? Perhaps I look stupid because I have both a physical handicap and a speech disorder.

Dr. Yamamoto took me to Nagoya University Hospital in her car to carry out further tests. If I suddenly look right gazing forward, the red ball I can see

gets blurred, divided into two parts. This time I tried looking left all of a sudden. The degree of blur was less on the left. As I thought, the disorder of my right motor nerves is progressing more. In the car, I told Dr. Yamamoto that after the injection I don't feel sick like I used to and I was wondering if that meant the new medicine was no longer working on me. I also told her that although my Achilles tendon seemed to have softened, my speech disorder was getting worse.

"As for the speech disorder," she sad, "the best thing is to finish saying what you want to right up to the end, even though you may find it difficult to pronounce all the words. Ideally, people will get accustomed the way you speak."

Chapter 5 - Having Understood The Truth III

Chapter 5 - Having Understood The Truth III

Training

1. Using a pair of crutches. (I almost fell over because I haven't got much strenght in my right hand).

2. Practicing standing up from a chair.

3. Though I was told I wouldn't be able to walk unless I could kneel, I felt dizzy and couldn't do it well.

4. Handiwork: knitting, making things, etc.

The 20th day in hospital. I had the second round of tests on my functions.

"There are no big changes," they told me.

I was shocked!

"But you haven't gotten any worse," they added.

That's no good! I have to get better-even if only a little.

I went to the Rehabilitation Room. There were many physically handicapped adults in there, but not many children. There was a man who wasparalyzed on one side as a result of a stroke. As he watched me gritting my teeth as I tried to kneel on a mat, he was wiping his tears away. With my eyes, I told him, "Look, I really can't afford to cry now. I'm in so much pain, I want to cry, but I'll save that until I can walk. You should keep at it too, OK?"

I feel uneasy and anxious about how much effort I'll have to make in order to be able to walk. When I returned to my room, I held some knitting needles-though rather than saying 'held', it would be more accurate to say 'grabbed.' Once I've grabbed them, I can't let them go again; my body gets stiff and I can't open my hand or clench my fist. It takes me up to 30 minutes to knit just one row.

I think I'll practice the kindergarten song Musunde, hiraite (Clench your fists, open them . . .), keeping it secret from the other patients in my room.

Ehenever the hospital director or the doctor in charge comes round, a lot of young interns follow them. Their conversation makes me feel sad:

Item 1. The computer route inside my cerebellum is broken, so the movements which ordinary people can do involuntarily are only possible after the instructions have been fed back once to my cerebrum.

Item 2. My occasional grinning is pathological.

The interns listen seriously to the director or the doctor in charge, but I feel rather bitter. It's not nice to have yourself talked about like that. I like the interns because it's fun when we talk about books or friends, but they become different during those visits when they peer at me with curiousity. However, they can't become good doctors unless they study hard, so I guess it can't be helped . . .

I can move busily around the hospital thanks to the splendid service of my wheelchair - when I go for rehabilitation, various tests, and treatment on my teeth. I've made friends with a lot of patients and nurses. K-san made some rice balls for me. The middle-aged man who gave me

a melon invites me in the evening to watch TV with him. One intern nurse brought me an ice cream. he middle-aged woman in Room 800 arranged some flowers in a vase for me. I read a nursery tale with Mami-chan. I feel like they're all my relatives. When one middle-aged man was leaving hospital, he said to me, with tears in his eyes, "Aya, do your best till the last minute!" I really have c chance to meet a great variety of people. Everyone says "You're a good girl, Aya. I admire you." (But I feel embarrased because I don't think I'm a 'good girl' at all.) I've only been here for a short period, but I'll never forget you all.

Chapter 5 - Having Understood The Truth IV

Chapter 5 - Having Understood The Truth IV

Graduation

As graduation day approaches, the topics in all the classes have focused on attitudes toward entering society with a handicap and possible places of employment. When I entered Higashi High, I studied with the goal of going on to a university. When I was a second grader at Okayo, I could still walk and thought I could find employment. But everything became impossible when I became a third grade student.

**-kun = ## Company
**-san = a vocational training school
Aya-Kito = staying at home . . .
That's the route fixed for me.

For the last two years, I've been taught to 'acknowledge being disabled and start from there.' I've had to suffer and fight a great deal. Every time some bright light came into my life, I had to experience a burst of heavy rain or a typhoon . . .followed by more fine days. I've reached graduation always carrying a feeling of instability. How much longer will I have to suffer and fight until I can find my life? I wonder if the disease gnawing away at my body will refuse to release me from agony until I die - as if it doesn't know the destination?

I wanted to be useful to society in some way, making the best use of the knowledge I've acquired from twelve years of school life and all the things I've learned from my teachers and friends. However small and weak my power might be, I'd have been so pleased to give something. I wanted to do something out of gratitude for all the kindness I've received from everyone. One thing I can dedicate to society is my body, for the sake of medical advance: I can ask for all my usable organs, such as kidneys and corneas, to be distributed to sick people . . .

Maybe that's all I can do?

Chapter 5 - Having Understood The Truth V

Chapter 5 - Having Understood The Truth V

At Home

I had a feeling of nostalgia as I unpacked all the belongings I used during my boarding school life. Now I feel like an old woman. Mom and Dad go out to work and my brothers and sisters are spending their regular lives, commuting to school and nursery school. If I'm the only one in the family leading an undisciplined life, I'll become a burden to them, so I should at least try to lead a planned life:

1. I'll address people properly: "Thank you," "Good morning," etc.
2. I'll try to speak words sharply and clearly.
3. I'll try to become a considerate grown-up.
4. Training. I'll gain some strength and help with the housework.
5. I'll find something to live for. I don't want to die while I still have things I must do.
6. I'll try to stick to the family routine (times for meals, baths, etc.)

Damn! Damn! I bang my head against pillow.

Everyday between 8 a.m. and 5 p.m., I stay here by my self. I'm unbearably lonely. I write my diary or some letters, I watch the TV program Tetsuko no heya (Tetsuko's Room), and I have some lunch. Then I wipe the floor, partly as a form of training. I'm leading a life which is free, but, in fact, it cannot freely be controlled.

I feel relieved when we all have dinner together, But then I feel lonely again when I go to bed, thinking that tomorrow will be just the same as today. Just as I was feeling like that, I toppled forward, even though I was in a sitting position. I broke the crown on my toot that I'd bothered to have put in.

"Aya, your voice has been getting smaller recently," Mom said to me. "Your lung capacity's decreasing, so I think you should train to speak out more. Why don't you sing loudly during the daytime? Nobody will laugh at you. And when you ask everyone to come together, call us so loudly we'll all be surprised! Why don;t you practice a bit now?"

I sat on the floor with my back straight and cried out, "Hey!" My pitch was very high and we both burst out laughing. I tried again : "Hey!" My brothers and sisters came running downstairs, all shouting, "What's going on?"

I did it!

"Fromnow on," Mom explained, "Aya will shout 'Hey!' whenever we want everyone to come together for something. Well, now you're all here, how about some dessert?"

We all laughed at the humorous way Mom spoke and then we ate some bananas.

Chapter 5 - Having Understood The Truth VI

Chapter 5 - Having Understood The Truth VI

Third Stay in The Hospital

"I'll rely on Dr. Yamamoto."
I want to get my body repaired at the hospital. I can only live properly if I have good health . . . I wonder if I can be sure - somehow or other - of being able to do at least my own things when I reach 20? Doctor, please help me! I'm trying to encourage myself by saying that I don't have time to be wimpy. But I can't stop my disease from progressing, however much I try . . .

"You're not a student this time," said Dr. Yamamoto, "so you can take your time and stay at the hospital until you get better. Then you must do your best to stay alive. As long you're alive, I'm sure some good medicine will be developed. Up to now, neurology in Japan has lagged behind other countries, but recently it's been advancing at an incredible speed. Leukemia was a fatal disease up until a few years ago, but today some people are cured. Little Aya, I'm studying hard with the hope of being able to cure patients like you."
I couldn't stop crying. But today they were tears of hapiness.
"Thank you, Dr. Yamamoto. You haven't given up on me. I was so worried you mnight give up on me because I haven't recovered, even though I've stayed in the hospital twice and used the new medicine."
I Nodded my head strongly in assent. I couldn't speak properly. My face was steaked with tears.
Mom had her back to me. Her shoulders were shaking.

I feel so happy and so grateful for having been able to meet Dr. Yamamoto. Whenever I;m weak physically and mentally and feeling deeply discouraged, she comes to my rescue. Even when she has many patients waiting in the Outpatients' Department, she listens to me carefully without taking any lunch. She gives me hope. She gives me light. Her words-"As long as I'm a doctor, I won't turn my back on you"-were so reassuring!

Already three months have passed since my graduation. I received a letter from one of my classmates. She had found a job working at a company. She told me she was getting used to being there and was trying hard. As for me, after three months, I'm leading a hospital life again-in order to start over by repairing the damage to my body . . .

I started off my day by singing Bata ga saita (The Roses are Blossoming) in the toilet. I played the harmonica to increase my lung capacity. It had a very nice sound. It sounded as if it was blowing everything away-including all the bad things and death. I'll play it again without worrying about upsetting the neighbours.

On the way to Rehabilitation, I dropped by the toilet. As I was trying to sit down, I felt heavily on my buttocks into the toilet bowl and wet the back of my sweat pants. I didn't have time to change, so I went straight to rehabilitation. When I was doing my walking training, Y-sensei took hold of the rubber part at the back of my sweatpants. Discovering it was wet, he went away and left me as I was. Aya was left all alone at the parallel bars! Regarding it as 'independent training', I put a protector on my right foot to keep my ankle at 90 degrees, put some urethane between fingers, and started walking. I held firmly on to the parallel bars, Toodle, toddle . . .
Y-sensei watched me. "Put your legs forward a little more quickly," he told me.

I wanted to say, "It's awkward, you know, because my legs, the upper part of my body, and my hips won't moving forward together. If I get tense trying to do something about it, my legs get left behind and that's why I fall over." But I was rather diffident becuase I felt uncomfortable about my sweatpants. I said nothing and tried to do it many times by myself.

Chapter 5 - Having Undestand the Truth VII

Chapter 5 - Having Undestand the Truth VII

The Mirror

I had my hair cut today. But I didn’t want to look in the mirror. I don’t like looking at myself with a demure expression. As for my complacent smile and the face with my eyes shut tight that I always show to other people, they’re not worth looking at. However, there’s a big wall-mirror in the Rehabilitation Room. O-sensei said I should look at myself in it to correct what’s wrong with my posture. In my head, I have an image of myself as an ordinary healthy girl. But I didn’t look so beautiful in the mirror. My backbone’s bent and the upper part of my body leans forward. There’s nothing I can do but admit that facts are facts. However much I try, I still can’t completely throw away the hope that I can escape my disability. I want to acquire at least one fact-that thanks to my strict rehabilitation. I’ve become able to do something I couldn’t do before.

I took on the challenge of conquering my body with willpower. But I failed. My face went white and I felt sick. I gave up. I realized that I was digging my own grave.
“Be careful not to overdo it.”

I fell over today in the toilet and hit my head badly. There was no bump, but I had terrible headache. I thought I was dying.

There was a flash of lightning outside and we started hearing thunder. I went to the public phone in the corridor in my wheelchair and rang home. Mom answered.
“Aya, I’m looking forward to Sunday,” she said. “We only have three days to go. What do you want me to bring? I’ll do your washing for you. Can you hear thunder there?”
“Hmm, yeah,” I answered coolly.
“Now I could die”, I thought.

Chapter 5 - Having Undestand the Truth VIII

Chapter 5 - Having Undestand the Truth VIII

A theft

I do my washing myself once a week, Today, as usual, I put my dirty clothes in a canvas bag and my purse in the back pocket of the wheelchair. Then off I went. I took the elevator from the eighth floor to the first floor I read a book in the lobby while I was waiting for my turn.

A middle-aged woman called me.
"Right, it's my turn," I thought. I put my hand in the pocket to get my purse. It wasn't there! I checked several times, but I couldn't find it. I was sure I had put it there. I was very upset.
"What's the matter?" asked a man who was also waiting.
"I seem to have forgotten my purse, so please go ahead before me," I said and left.

I never expected that kind of thing to happen, so I didn't bother to keep an eye on the back of my wheelchair. I lost Y400 and my purse. I'm sorry, Mom.

Suzuki-sensei and Tsuzuki-sensei from the school for the handicapped came to visit me. It's four months since I graduated. I was pleased to see that they haven't changed at all.
"Please lie on my bed," I said.
"Well, I don't really like lying on a hospital bed. Do I look tired?"
"No, but if your body odor is on my futon. I'll feel secure and sleep well!"
There were both at a loss as to what to say. They had an indescribable expression on their faces!

Ako visited me. I went out with her in the wheelchair. The sun shone so strongly I could hardly open my eyes. I want my skin to be darker. I'm too white.

Wonders will never cease! The tsukutsukuboshi cicadas (Meimuna Opealifera) were already buzzing. Wait a minute, summer's disappearing!

Ako seems to be suffering a lot because she lacks motivation. Perhaps she can't find what she's looking for. I can understand how she feels, but I'm a bit worried about her. On the spiritual plane, she's more independent than me. It seems that I'm the one who has the last ability to become independent of our parents.

The middle-aged owner of an electric appliances store who had had a stroke bought me a hime-yuri star lily at the flower shop on the 1st floor of the hospital. He can only use one hand, so he passed his purse to the woman at the shop and asked her to talk 250 yen from it. Then he gave me the flower saying, "Let's hope it blooms!" His gentle face looked radiant.

Like a mother kissing her baby's cheek,
I kiss the bud of the lily
That's just about to bloom,
Wishing it to be gentle and charming.

Chapter 5 - Having Understood The Truth IX

Chapter 5 - Having Understood The Truth IX

A Pronouncement

• I've gained some strength since the start of my hospital stay.
• I can now make two return journeys holding on to the parallel bars, but it's still impossible to do practical walking while holding onto something.
• Regarding my speech, people often have to ask me to repeat myself. I was hoping to use writing as only the final tool of communication, but I have had to use it a few times.
• My meals have been changed from ordinary food to chopped stuff.

Today was my last day in the hospital. I did my final washing at the risk of my life. I got up at 4:30 and went down to the room. There was nobody there. It was lucky I could use the machine right away. But when I had to move the washing from the spin drum to the drier, I couldn't do it unless I was in a standing position. Normally someone helps me.
"Mom, help me!" I shouted in my heart, but there was nothing I could do. I realized I will have to face this kind of thing many times in the future.
"Your disease won't get any better, Little Aya," Dr. Yamamoto told me, "and it could get worse. But in order to slow down its progress, you must train yourself to stimulate your brain."

That was a very tough and painful thing to hear. But thanks for telling me the truth, anyway. How should I live in the future? The choice of paths I can take has been narrowed down. It seems very demanding. But I'm determined to live my life facing forward, even if I have to crawl. I shouldn't shrink from it.

Dr. Yamamoto also kindly said, "Don't let a cold develop. Please ring the hospital immediately if you have trouble breathing or have a temperature. Keep stretching your Achilles tendon and do lots of deep breathing excercises. I hope you'll keep moving around as much as you can."

Thank you Dr. Yamamoto, all the nurses, and the other patients. I think I may need your support again some day. I hope you'll look after me then in the same way.

Chapter 6 19 Years Old (1981-82) - "I May Not Last Much Longer . . ."

Chapter 6 19 Years Old (1981-82) - "I May Not Last Much Longer . . ."

Ako gave me a shirt to congratulate me on leaving the hospital.

I was determined to keep at it again today, but all I did was eat, brush my teeth, go to the toilet, and sleep. That's how the day went by.

I had my hair cut in the evening. It was trimmed short and prickly. I can't take care of it myself, so who cares whether I have curls or not? Thinking carefully, I understand Mom's consideration very well; she said that the time needed for combing should be reduced. When I looked in the mirror, I realized I now have the same hairstyle as Dr. Yamamoto.

Solitude

If I recover from my disease, if I become able to walk like I used to, if I become able to talk without feeling any inconvenience, if I become able to eat using chopsticks well . . .

Thinking like that is only a dream. I shouldn't let thoughts like that into my head.

As a disabled person, I'll have to live my whole life bearing the burden on my shoulders. But I'll fight against it, even if I'm in pain . . . That's how I've made up my mind to think . . .

Since Dr. Yamamoto told me my disease won't get better, I have prepared myself to burn to the full and then disappear all at once, hoping for a short life.

Mom. I'm sorry that I've made you worry so much and that I can't repay you at all. My brothers and sisters,please forgive me: not only could I not do anything worthy of an elder sister, but I've also taken away your mother's attention.

I know I'll be thrashing around for a several months to come. That's my life.

Oh, what on earth should I do?

I've moved from the upstairs room I've been using for a long time to the 6-mat Japanese room downstairs on the 1st floor. It's closer to the kitchen, the bath, and the toilet.It also faces the corridor the family passes along most. If the large windows is opened, I can see the garden, and Kuro, our dog, is always there looking at me.

Kuro had four puppies! They can't see anything yet, but they're good at finding their mother's nipples. Kuro looks great as a mother. And this morning, the buds of the lilies opened. I'll name the female puppy Lily!

Chapter 6 - "I May Not Last Much Longer . . ." II

Chapter 6 - "I May Not Last Much Longer . . ." II

Love

In the evening, I received a camera seminar. My brother came to my room with his chemistry homework and his new camera. I guess he stayed with me because he thought I might be feeling lonely by myself. What a kind boy he is!

For more than two hours, he happily explained to me all about his camera. Then he went back to his room without doing any homework.
"Tomorrow," he said, "I'll get up at fice o'clock and remove any sharp stones from the playground for the puppies."

But surely he'll have to do his homework, won't he? Kuro's puppies, I don't think he'll have time to remove the stones from your playground. Sorry about that.

I feel loved in the warmth of my home. But I can't express my love to everyone. I can't speak and I can't make any actions to express it . . . The best I can do is smile in response to their love.

*I should go to bed early and get up early.
*I should brush my teeth quickly.
*I should not be late for meals.
*I should do my training every day without forgetting.
*And I will make an effort to respond to everyone's love.

Self Training

- Standing up 10 times
- Raising bottom 10 times
- Rolling and sitting up 10 times, leaning to right and left
- Raising arms for 5 minutes
- Standing up holding onto something for 5 minutes
- Breathing in and out deeply 3 times, blowing my harmonica, and again breathing in and out deeply 3 times (When I blow the harmonica, I can get a good sound if I pinch my nose so that my breath doesn't leak out)
- Knitting and making kimekomi quilt balls to train my hands
- Reciting picture books to improve my speech . . .

Chapter 6 - "I May Not Last Much Longer" III

Chapter 6 - "I May Not Last Much Longer" III

Late Autumn

Suddenly I noticed the cicadas have stopped singing. They've passed the baton on to the bell crickets. It's getting chilly both in the morning and evening. I can't help feeling that my stamina and my energy are both deteriorating.
Is it all right for me to stay alive?
If you die, you won't leave anything behind.
Love-what a sad person I am relying only on that! Mom, is it really all right for an ugly person like me to be living in this world? Mom, I'm sure you can find something shining brightly in me. Teach me. Guide me.

Looking at the canna reeds
Bloomin in the garden,
I miss you

Early this morning, I was woken up by the yelping of the puppies as they played with each other. The early morning sunlight was streaming in through the window. Lying in my futon, I watched them for a while. They've really grown up quickly. They were only yelping until recently, but now they can also growl like mature dogs. That could also be said about me . . .
I smiled a bitter smile when I thought that.

I want to go to a florist to buy a pink rose.
I want to go to a cake shop; I'll decide when I look through the window whether I want a cream puff or a shortcake.
I want to go to the liquor store; I'll say to the chunky middle-aged man with the reddish face, "Can I have a bottle of Akadama Honey Wine?" I want to give it to my brother.

My wish has come true: I was presented with a copy of Totto-chan written by Tetsuko Kuroyanagi. But leaving the enjoyment of that till later, I started on my kimekomi craft work. I have to cute the kimono cloth into several pieces of the same shape. Then I paste them on to a round woodenball with glue. I can't use a pair of scissors well, and it's also difficult for me to fix the cloth with pins, so I only make slow progress. I'm really serious when I cut the cloth because I won't be able to complete it properly if I get the measurements wrong.

As I was about to go to sleep at night, I heard the door being knocked. (I remember a scene like this in a book written by Shinichi Hoshi.) As I said, "Come in!"m the door opened quietly and in came a young little girl . . .Yes, it was Rika.
"Aya, I have something to talk aboutm" she said in an unusually serious manner. "Tomorrow I'm going to nursery school. I won't be able at home, so you'll have to be a good girl, all right? Don't fall over. We'll play together when I come home, all right?"
That made me cry.

I think you inwardly digest your mother's affection and it is changed into love towards other people.

When I gave peanuts to the birds, the are them happily. But as soon as I opened the wirte netting over the entrance to clean their cage, the birds suddenly flew out and disappeared. They could only fly away like that because they didn't know that they may not be able to live in the wild and that there are scary enemies out there. Please come back when you realize that . . .

Feeling sad, I wrote some letters to my teachers and friends.
"Please buy me a spiral-bound notebook like sketchbook," I asked Mom "I don't feel like writing my diary in an ordinary close-ruled notebook."
"What?" she replied. "Aren't you being a bit selfish saying you can only write your diary depending on your mood. It might be different story when your condition is bad, but right now you should think that you must write something anyway."
I learned something else from Mom's way of life. She was right. If she said, "I can't get into the mood for preparing dinner," I'd starve.

Rika visited me when I was lying down - -I was coming down with a cold. She sat beside my pillow and started drawing a picture of rabbbits on the pillow cover using a maker pen - a big rabbit and a small rabbit standing next to each other. She also drew three or four circles between them. I think she intended them to be flowers.
"Aya," she said, "I thought you might be lonely sleeping alone during the night. So please make these your friends."
Her tenderness again made me cry.

I read an article in today's morning paper about a disasbled person in an electric wheelchair who has done a correspondence course for twenty years so that he could acquire a clock repair qualification.

I don't develop anything. My body has stopped its emotional growth.

I wonder if there's any kind of job I could do? (My brother says there isn't, and I half agree with him.) But I don't think everything is impossible.

All I cando right now is write and do kimekomi craftwork. Even if I can't have a job, I can at least help Mom by wiping the floor, folding up the washing, etc.

Today I was intending to make some more kimekomi quilt balls, but I ended up playing with my sister instead. During that time, Mom cleaned my room.
"Leaving the dirty stuff as it is - that's what animals do," she said.

I really appreciated what she did. All the hairs stuck in the carpet (over the tatami mats) had beautifully disappeared. But it became a bit too clean - I couldn't feel relaxed.

I wanted to know how Mom felt when she was cleaning my room. She had to spend half her day looking after her troublesome child . . .

"Poor Aya!" Said Ako.
"What's fun for you, Ako?" I asked.
"What's fun for you, Aya?" she replied.
"Nothing," I answered.
"Poor Aya!" she said.

Today I was training on the mezzanine floor. I practiced holding the rocking chair and letting go with both hands.

I wasn't very stable and I could only stand for about fice minutes, but that's how I'm trying. Yet why can't I do it better?

My brother also said, "Poor Aya!" It was already dark outside and the bright TV screen was reflecting dimly white on his face.

I want to go somewhere spacious.
I don't like being crapmped any more.
I feel so much pressure.
I can't go out because it's cold outside.
I keep thinking about death, so I'm scared.
I can't move . . . I'm beaten.
I want to live!
I can't move, I can't make money, I can't do anything useful to other people.
But I want to live.
I want to be understood . . .

Rika spread some jam thickly on a piece of bread. It dribbled onto the floor while she was eating. "What a waste!" I thought. But Mom just wiped out the jam, saying, "Too bad!" Where does this difference in attitude come from?

When I failed trying to stand up from the chair, I squashed the orange in my pocket. Feeling like Mom, I was able to think, "Too bad!"

Chapter 6 - "I May Not Last Much Longer" IV

Chapter 6 - "I May Not Last Much Longer" IV

Cruel Words

At last I've been 'referred to.'

Mom and I had gone to the hospital for an examination. I almost fell over int he toilet and Mom was supporting me. I was desperately holding onto her.

Beside me, a woman in her 30s wearing clothes with a red check pattern whispered to her little boy: "Unless you're good, you'll become like her.

Her comment made me feel very sad and miserable.

Mom cheered me up by saying, "Well, if she raises her child by saying things like that, when she grows older and has troubles with her own body, she may realize her teaching was wrong and the fact that she wasn't a good mother has come back to haunt her."

I guess I'll have to face this kind of incident more frequently in the future. When young children encounter someone different from themselves, they get interested and stare. It can't be helped. But it was the first time I've been treated by an adult as raw material for child discipline. Thatwas rough on me.

My family reckoned I must feel lonely being all by myself during the day, so they got me a cat. It's quickly become attached to me. It comes into my futon or inside the kotatsu with me. And it sits on my knees. It's very cute. When Rika holds it, she hugs it tightly;it doesn't like that and tries to escapes from her. Then she pulls its tail and tries to put it on her own knees, no matter how much effort it takes. It refuses more and more. Then Rika gets angry. In the end, she hits it. I tell her off, saying she shouldn't hit it. I tell her off, saying she shouldn't hit it. Rika glares at me and then starts hitting me.

"Don't you dare!" I say, pretending to be angry with her.
Rika jeers at me, saying, "Aya's angry, Aya's angry!"
"If you say so.:
I told Mom.

I'm 19 years and 5 months old; RIka is 5 years and 7 months old.

I'm living the life of an old woman: no youth, no energy to live, nothing to live for, no goals to work toward . . . All I have is my deteriorating body. Why do I have to be alive? On the contrary, I want to live. The only things I enjoy are eating, reading and writing. I wonder what other 19-years-old enjoy?

When I had my last medical examination, I was told to enter the hospital again after the New Year. I'm scared because I'monly getting worse and there's no sign of recovery. WhenI think about that, I can't help crying. Thrashing about in the darkness . . . Is that my life? Damn! Showing my defiance, saying "What's wrong with being 19 years old?" or "What's wrong with being 20 y ears old?" won't lead anywwhere.

When I cry everyone gets depressed. When I cry, I get stuffed-up nose and a headache and I feel tired. So why do I cry? I have nothing to aim to finish-neither a job nor a hobby. Unable to love anyone or stand on my own . . . I'm wailing.

I look at my tear-filled face int he mirror.
Aya, why do you cry?

I had instant rament noodles for lunch today - -known for the slogan 'Just add hot water and it's ready in three minutes.' Because I can't sip soup well, I choke easily. It's very painful, you know. If I choked and couldn't breathe when nobody was with me, it could be fatal.

Chika-chan, my senior at boarding school, had polio. She drooled a lot, but she could drink trea from a teacup. Ikeguchi-kun used a straw. Why can't I drink without dripping? Maybe it's because the muscles I use to swallow has weakened. Today I concentrated on my mouth. Like drinking sake from a small cup, I tried to sip it little by little. I didn't choke, so I was happy.

There's another thing I felt happy about. Up to now, I coudln't do something that to most people is a matter of course. It's embarrassing to write this, butbecause I often couldn't get to the toilet in time, I had to keep changing my underwear. I realized the caouse of the problem: I only started moving after nature called, but I couldn't move fast enough. So I decided I should go to the toilet regularly at fixed times. And it worked! - now I can manage without any accidents! I'm so happy, I want to tell someone. But it's not the kind of thing you can tell to everyone, so I'm secretly enjoying my success.

Chapter 6 - "I May Not Last Much Longer" V

Chapter 6 - "I May Not Last Much Longer" V

Class Reunion

Five teachers from the boarding school, as well as 17 students and their parents, gathered at the restaurant called Inaka. I was happy to see everyone looking well. Before the dishes were served, everyone stood on the veranda chatting in the warm sunlight. I was the only one sitting.

Suzuki-sensei came over and sat down cross-legged beside me. Our eye level became the same. He gave me a handkerchief, saying it was a souvenir from Singapore. As usual his eyes were gentle like those of an elephant. Yo-chan gave me a book she'd bought using the wages from her job - Cherry-chan to Einstein boya (Cherry and the Young Einstein) by Teruko Ohashi. We ate to our hearts' content and laughed happily.
"It's been a while since we ate a full-course Japanese meal and saw everyone, isn't it?" Mom said later."We can enjoy a lot of good things if we're alive, can't we?"
"Yes, we can," I answered.

If someone only says one or two words a day, can you say that they are really leading a life as a member of society? . . . I'm becoming that kind of person.
If someone can't do anything by themselves, and has to have other people look after them inorder to live, can you say they are leading a social life? . . . I'm that person.

I want to be useful to other people. --> I will at least try to do my own things so that I won't disturb other people. --> I can't live unless I have someone to look after me. --> I'll become a greater burden on other people . . .

That's the story of my life!

It's snowing. Even with the electric heater on full (oil heaters irritate my throat, so only in my room there'san electric heater) and warming my self in the kotatsu, I feel chilled to the bone.

I started reading Hashi no nai kawa (The River with No Bridge) by Sue Sumii at the New Year. I finished five volumes at a stretch. I easily get totally absorbed. It's a bad habit. I even skipped training to read it. The air was cold when I went out into the corridor. I felt a chill. I put on a short padded jacket in an attempt to avoid getting a cold. But I sensed danger because my body's so stiff. I've decided to eat my meals in my room while it's cold. I feel lonely when someone brings me my food and I eat it all on my own, but sometimes my brothers and sisters come and eat with me.

To tell the truth, I don't like sleeping and eating in the same place.

Chapter 6 - "I May Not Last Much Longer" VI

Chapter 6 - "I May Not Last Much Longer" VI

A Traffic Accident

ALL RIGHT, ALL RIGHT . . . Ako was injured and entered hospital. On her way home on her bicycle, she was hit by a car that didn't stop where it was supposed to. She was taken to hospital by ambulance. Will she be all right? I don't know what to do. I can only pray for her . . .

Mom came back from the hospital. Ako has broken two bones in her right leg. She'll have to have an operation once the swelling goes down. Mom said Ako was crying as she did her best to endure the pain, and kept saying, "Mom, I'm sorry about this."

"It was a good thing that she didn't hurt her head. I was really relieved," Mom said quietly. She looked smaller somehow or other.
"Please take me to see her," I said.
"I'll take you when her operation's over and she starts smilingm" Mom replied. "If you start crying, it may make her injury hurt more. So you'll have to wait for a while."

Oh I feel like flying to Ako and saying, "Ako-chan, hang in there!"

My brother dropped by the hospital on his way back from school, but he didn't tell me how she was. Is she that seriously hurt? I really want to eat some sweetened adzuki beans, but I'll be patient until Ako gets better. Hang in there, Ako-chan!

Is Mom all right? She doesn't seem to be sleeping much.
"Mom, I'm anxious about Ako, but I can't do anything," I said.
"Please don't fall over and hurt your self," she replied.
"That's the best thing you can do to help."

It seemed to me a rather passive way to help, but I nodded. Then I said, "Yes, I can see that. I know I won't be able to see Ako until I stop crying. But I'll try hard not to cry, so please take me to see her."

Rika suddenly said, "Ah, I want to die!"
I go serious just hearing the word 'die'. Even when I threatened her by saying "It'll hurt you know," she said,
"That's OK." When I said, in haste, "You won't be able to go on any picnics," she finally said, "I don't like the sound of that. I won't die then."

She wasnt seriously saying that, of course, but I was kind of seirously trying to stop her.

A breeze is blowing-you can feel the arrival of spring. Even the grass shoots are growing rapidly. I can't scretch my left Achilles tendon very well, and it's difficult to sit-maybe because I didn't do much exercise during the cold das. I've also developed a phobia about going to the toilet. I often get stiff shoulders and feel uncofortable because I don't sweat, even when it's hot. My tounge's movement's poor and I can't even lick a soft ice cream. I guess that's part of the reason I'm having difficulty speaking.

Yamaguchi-san's brother brought a new car. He invited me out for a drive. That was really unexpected!

It was a beautiful spring day. The shepherd's purses, Chinese milk vetch, dandelions, and early clovers were all beautiful. I wanted to make a ring of flowers, but I couldn't do it by myself. I felt embarrassed to ask a man, so I didn't. I found one clover which was sticking out over a ditch. Worried it might fall in, I peered over at it. But it was all right because it had a big root. I felt it must be strong as long as it has that support.

We dropped by Yamaguchi-san's house on the way back. He played his electric guitar. It was a very powerful sound. He said he's deeply into guitar-playing now. He wants to have more equipment, but, he said, "The money comes first, and everything else follows."

In my case, "A sound body comes first, and everything else follows."

That's more difficult than money.

Chapter 7 - 20 Years Old (1982-83) - "I don't want to be beaten . . ."

Chapter 7 - 20 Years Old (1982-83) - "I don't want to be beaten . . ."

A Fall in The Toilet

Mom brought back some cakes, but I didn't have the energy to eat them. I've been lying down almost all day.
Thinking that was not so good, I tried doing some sit-ups on my futon. I could only manage one.
The summer holiday's starting tomorrow. Mom's telling my brothers and sisters to discuss what they will do
so that they won't all go out at the same time. That's reassuring. I'm sorry to be such a burdon. I'll make
an effort to get better, so please forgive me.

When I go to the toilet, either Mom or Ako comes with me. They help me to pull down my pants and sit on the
toilet. Then they wait for me outside. One day, I swayed to one side and fell down with a thud. I don't know
how it was cut, but my finger was bleeding. I lost consciousness.
The next thing I knew, I was in bed. I could see the blurred faces of Mom, my sisters and my brothers. Then
again I fell into sleep. I could vaguely hear Mom's voice somewhere in the distance saying, "You were just
unsteady because your blood pressure was low. Don't worry about it and sleep well."

A stable iron toilet seat weighing more than seven kilos has been installed. The family chose it at the shop
selling special equipment for the disabled in Nagoya. At the same time, they got a bead mat for me (to help
avoid bedsores) and a sheet to prevent the mattress getting dirty.
Also a small desk with short legs (with writing tools, notebooks, letter paper, and so on) was put within my
reach. On top of it there's a bell wich produces a loud sound when it's rung.
Now I spend most of the day sleeping. I'm scared of food going down my respiratory tract by mistake because
I can't swallow well, so I can only eat a small amount three times a day. I eat so slowly that lunchtime
comes round just one hour after breakfast.
My whole day is taken up by eating, sleeping and evacuating. What's more, someone has to help me do all
those . . .
I think my life has finally reached the point where it's just one step before it will impossible to stay at
home.
I've decided to stop thinking on and on about my disease.

Chapter 7 - 20 Years Old (1982-83) - "I don't want to be beaten . . ." II

Chapter 7 - 20 Years Old (1982-83) - "I don't want to be beaten . . ." II

Looking for a hospital

Today, Mom and I went to Nagoya Health University Hospital. I lay on the passenger seat with the back lowered.
I mostly dozed till we arrived at the hospital.
"I'll push them to let you stay here," said Mom, "so don't worry. I know the heat's bothering you, but you'll
just have to be patient till the weather gets cooler. Aya you have a lot of fight left in you. I'm sure you'll
get better."
But I felt that this time I might not last: I have neither the stamina nor the motivation. I don't even have
the strength to think, so I couldn't possibly put up a fight. I don't want to be beaten by my disease, but the
demon of ill-health is too strong.
As I lay on the ward trolley, Mom was negotiating with an outpatient nurse, trying to keep me from overhearing:
"We can't possibly wait in the waiting room as long as we usually have to. She's so weak. Please treat her
as an emergency patient and give her a medical examination quickly. If the other patients are unhappy about it,
I'll gladly explain her condition to each one of them and ask for their approval."
The nurse disappeared inside the consultation area, saying "I'll ask Dr. Yamamoto." Moments later, Dr. Yamamoto
herself appeared. She took hold of my hand and said, "Ah, long time no see, Little Aya. I've been waiting for
you."
Oh, this will keep me going . . .
It would be a pity to die now . . .
If only I could write again, I wouldn't have anything to regret . . .
Saved by Dr. Yamamoto yet again . . .
Tears filled my eyes. Mom was crying, too.
After the consultation, Dr. Yamamoto said she would introduce us to Akita Hospital in Chiryu City where she goes
twice a month for medical examinations.
I felt relieved when she said, "Little Aya, I think you should enter the hospital as soon as things have been
prepared for you. Please wait just a little. I want you to be where I can keep an eye on you."
My upper lip was bent when I fell over, and now it won't meet with my lower lip. I handed the doctor a memo that
I'd written at home:
'It's difficult for me to swallow, so please give me some medicine to relieve the tension in my throat.'
After the examination, Mom drove me home. I vibrated in the car for two hours.
"You have to gain stamina," Mom said. "Tell us anything - anything you want to eat or anything you may be able
to eat. Do you want something now?"
"Yes, I'd like you to bake me a cake," I answered.
"Uh-oh," replied Mom. "Ako's better at baking cakes than I am. Ako, Aya would like you to bake her a cake!"
"Then I'll make you one first thing in the morning," said Ako, all smiles. "Please look forward to that."
I was exhausted and went to bed immediately.

Mom visited Akita Hospital by herself. Befor she left, she told me that she'd check what kind of hospital it
was and talk with the doctors in detail. She also told my sister to ask me what I would need, sort out some
things for me, and put them in a box.

Chapter 7 - 20 Years Old (1982-83) - "I don't want to be beaten . . ." III

Chapter 7 - 20 Years Old (1982-83) - "I don't want to be beaten . . ." III

Hospital admission and a caregiver

I've finally entered Akita Hospital. I was feeling nervous because I'm not familiar with it.

A little old lady came to look after me.
"I'm Aya," I said in a small voice. "Nice to meet you."
Mom explained to her in detail about my condition, what I could't do, and so on. But it's really difficult
to get her to fully understand.
My speech disorder's getting worse, so I asked Mom to buy a magic blackboard. I probably say some words that
other people can't understand.
The movement of my tongue's bad, so the food overflows my mouth. My way of eating looks filthy. It's a
pitiful sight.


'What am I living for?'
From Aya's diary

I feel miserable for being unable to communicate well.

I'm the one who should take the most sensible attitude. But I don't feel very confident . . .

Mom, what am I living for?

I felt dizzy. I had a tearful face. But I closed my eyes and stayed still.

There's a pigeon's nest on the branch of the tree outside the window. A chick is growing up in it. I'm
happy about that.

My little old lady helped me get into my wheelchair and took me to Building #1. Then what? I used the
Western-style toilet to relieve myself.

During rehabilitation, I tend to close my eyes when I stand holding the bar. I can't easily open them again.
I know I shouldn't be scared, but my body gets stiff because I feel I might fall over.

I should properly grasp the things I can do now and put them into practice. Then I won't have to suffer so
much mental agony that I can't get to sleep at night . . .
I can't convey my desires quickly, so I sometimes can't get to the toilet in time. Mom suggested that I should
use a urinary drainage bag during the night. The reason for that is that the caregiver gets tired if her sleep
is disturbed.
I started crying, saying, "I don't like that idea because I know when I want to urinate. I'll try to tell you
in plenty of time, so please don't do that."
"All right, all right," said the little old lady gently. "Don't cry. You won't have to have one."
That made me cry even more.
In the morning , I met the Hospital Director in the corridor.
"Good morning, Little Aya. How are you doing?"
I smiled and tried to say "O-HA-YO" (Good morning) with pouted lips. By the time I got it out, he was already
a long way down the corridor. He must be very busy.

My tearful face is taking root - that's no good.
At night, my arms and legs got tense and stiff. The little old lady got up and gave me a massage.

Because I couldn't easily express myself, I lost my temper and cried. I'm the one who should be blamed for not
being able to communicate well. There was no reason for me to get angry with the little old lady. I'm sorry.

It's nice weather today. I want to stand up. I want to talk.

My little old lady praised me, saying, "Your handwriting's a bit better. You're eating a little quicker now, too,
and you're not dropping your food."
I feel there's something to live for if I improve even a little, and I get more relaxed. I must live considering
how other people feel. I made a promise to Dr. Yamamoto that I'll try to be able to ride in my wheelchair by
myself by the next time I see her.

I saw the blue sky. It's been a long time. It was so transparent, I felt I could be sucked up into it.

My pronunciation of the 'na' and 'da' columns is not very clear. It's also hard for me to say the 'ka', 'sa',
'ta' and 'ha' columns. I wonder how many words there are left that I can actually say? I'll have to overcome this
somehow or other.
Gather up your fighting spirit or the disease will defeat you!

My little old lady bought me an 'okonomiyaki' savory pancake for lunch. We had half each. I also had some
'o-shiruko' adzuki bean porrige with rice-flour dumplings.

I was running a fever and had no energy to talk. I felt very heavy. I lay in bed all day. My little old lady
looked into my face with a worried expression on her face.
Aunt Kasumi took me to the coffee shop inside the hospital. She helped me drink lemon soda with a spoon, one
spoonful at a time. I had given up on the coffee shop, thinking I'd never be able to go there as long as I
lived, so that made me so happy.

My little old lady's hands are rough and cracked now. They look so painful. It's because she has to keep on
washing my nappies due to my failures during the night. I'm sorry.

The Chunichi Dragons won the baseball league pennant! For some reason, we had a bonus of sweet red bean rice
and a cup-steamed egg custard for dinner. I wonder if the Hospital Director or the head chef is a Chunichi fan?

I wanted to stand up, but when I tried, I swayed like a swing and almost fell over. I was scared. My little
old lady helped me.
In the morning, I nearly choked. I was scared again. Unless I take care eating things - however tasty they
may be - it could prove fatal.

When my little old lady took me to the toilet, we saw a vase full to overflowing with beautiful cosmos flowers.
We winked at each other and stole one bud. We put it in the vase in our room.

"Little Aya, you're depending on your caregiver too much," Dr Yamamoto scolded me. "You must find what you can do
by yourself and do it."
I was happily thinking I was OK If I simply stayed out of bed for a long time, but I was wrong. Starting today,
I'll practice fastening my buttons.

I could walk! Leaning on my little old lady, I asked her to take me to the park. I wanted to play with some
dirt; I felt like putting the soles of my feet on the soil. I asked her to put my feet down softly on the
ground from the footrest of the wheelchair. The soil was so comfortably cool!

I desperately practiced fastening my buttons and rolling over and standing on my knees for rehabilitation. My
little old lady was impressed with what I was doing and helped me. She also bought me a pair of sweatpants and
a jacket. I must keep at it more . . .

I want to go home over the New Year. I wonder if I can make myself understood? I'm worried about how I can
communicate with everyone if they can't understand what I'm saying. But I still want to go home.
The bud of the cosmos has opened.

My little old lady cried while she was watching me training. "You did a good job!" she said.
"Why don't you watch Aya once?" she said to Mom one day. "She's working very hard, you know."
But Mom replied, "It hurts me too much to watch her." Then she said to me, "Aya, you've done very well. We
want you to come home for the New Year."
I moved my bowels carelessly.
"I'm so sorry," I said to my little old lady.
"Oh, helping you is my duty," she replied. "It can't be helped."
Still, I didn't know how to feel.

I had some ham for lunch. I hadn't tasted ham for a long time. It reminded me of the past.
I wonder how i can show my gratitude to my little old lady? I can't buy her anything because I don't have
any money. It will be nice if I get better soon and can look after her. Please wait till then!