The Start of Distress

At the Hospital

Life away from home has begun-for the first time in my life, I'm sharing a room with a woman who's about 50 years old. When Mom greeted her, saying "Kuregure mo yoroshiku (I earnestly ask for your support for my daughter)," I bowed to her as well. She has a serene look with lonely-looking eyes. I'm feeling nervous, worrying about what kind of life is waiting for me..

This evening, I went for a walk with the woman. We sat on a bench under a cherry tree. The light seemed to be moving around through the leaves. I couldn't see clearly because I'm very shortsighted. However, I felt a sense of bi (beauty) in the relation between the green leaves and the white light. There was also a sense of hen (change) in the way the breeze was casually swaying the leaves.

I am gradually getting used to hospital life. But 'Lights Out' is at 9 p.m. and dinner's served at 4:30 p.m. That's definitely too early! The pace of my life has changed and the busy day passes in a big rush.

I get a lot of checkups everyday: electromyograms (so painful!), electrocardiograms, X-rays and hearing tests. I'm taken to places all over the hospital. It's so huge, I sometimes don't know where I am. I don't like the dimly lit corridors. They depress. me.

Dr. Hiroko Yamamoto (now Professor at the Department of Neurology, Fujita Health University Hospital) said they will soon start administering a very effective kind of injection. In order to compare my condition before and after the injections, they filmed me walking, going up and down the stairs, buttoning up my clothes, etc. with a 16mm camera.

What am I going to be in the future.. or, rather, can I be something?

Conditions for Work
1. Something I don't have to use my body for.
2. Something I can use my brain for.
3. Something that brings in a stable income.

It's difficult. I wonder if there's any occupation that meets all these conditions?

Several young doctors fiddled around me.
"Stand on your toes!"
"Now stand up with your eyes closed!"
"Can you do this?"
And something about my pelvis...

After all that fiddling, they said, "Are you enjoying this?"
No more, thank you!
I almost shouted, "I'm not a guinea pig! Please stop it!"

Sunday. the long awaited day. My dear mom and sisters came to visit me. We went to the rooftop together to hang out the washing. The blue sky was so lovely. The white clouds were beautiful too. The breeze was rather too warm, but I felt comfortable. I fe;t I'd become more human again after a long time.

They took a sample of my spinal fluild. Now I have a headache, a terrible headache. Is it because of the injection?

Mi-chan's family visited me (Mom's younger brother's family). Uncle's eyes were red. I really wanted to comment on them but I couldn't. I just stared at him.
Then he said, "I got sunburned at work and I stayed up till late last night.. Do I look funny?"
He was so sunburned, I felt sorry for him. His eyse were like those of a rabbit. They looked as if he had just been crying.

"Aya, keep it up!" he said. "I'll bring you something delicious to eat next time. What would you like?"
"Actually, I want a book," I said. "Bonjour Tristesse by Françoise Sagan. I've wanted toread that for a long time."

I went to the Physiotherapy Department. It's located underground. Two physiotherapist, Dr. Kawabata and Dr. Imaeda, gave me a test to ceck my level of academy ability. I told them some nonsense: "I love Japanese and English, I'm confident in both and my grades are good." Who would dare to say something like that? I'll never say it again. Boasting about my result makes me feel more miserable and makes me want to rob a bank or something.. On the whole, I think being smart is something which should reveal itself automatically, it's not something you can tell from grades on a test.

Dr. Kawabata told me he was a naughty student in his school days. Honestly, I think that's better because it means you're healthy. As for me, I'm still young, but I'm already in this kind of condition. I was so miserable, I couldn't help crying.

I shouldn't say anymore. But I've written down all I wanted to say, so I feel a bit refreshed.

I study hard because I'm useless for anything else. If you took studying away from me, all I'd be left with is my disabled body. I don't want to think that. I feel that it's sad and cruel, but this is the reality of my life! I woulnd't mind being brainless. I just want a healthy body.

Today we went to see the doctor for the first time since I entered high school. It takes well over two hours to get to the hospital from here even if we take the Tomei Expressway, so we had to start early in the morning,

I decided to make some notes on what I wanted to tell the doctor:
#1. It's getting difficult to walk. I fall over unless I have something to hold on to. I find it hard to move around because my legs get stiff. They're particularly hopeless in the morning.
#2. I often choke when I eat meals in a rush and when I drink tea.
#3. I frequently grin without noticing. (I noticed this when my brother asked me what was so funny.)
#4. What disease am I suffering from?

After waiting for a long time as usual, I saw Dr. Sofue and three young doctors. I had the same tests as before - bending and stretching my legs, patting, walking, etc. I suppose it was to examine my motor coordination and my reactions. Mom briefly conveyed my notes to them. She also told them that I now commute to an ordinary public high school with some help from my classmates.

After the examination, the doctor said, "Well, I think Aya should stay in the hospital during the summer holiday. Than we can give her a proper checkup and treatment. Please take the necessary procedures for admission into the hospital before you leave today."

Gee ! Staying in the hospital? How awful! But I accepted the idea without much fuss, thinking, "I suppose it's something I can put up with as long as I can get my body out of its present state." But what on earth is happening to my health? Something must be going wrong. I'll be in real trouble unless I get it fixed as soon as possible. I'm scared. So the answer to my questions #4 was suspended until my stay in the hospital.

"Is Nagoya University Hospital a good hospital?" I asked Mom in the car going home. "Can they cure my illness for sure? This will be my first summer holiday as a high school student. There are so many things I want to do. I hope my stay there will be short."

"Aya," Mom replied, "you should keep making notes of anything you notice about your health, as you've been doing up to now. Don't forget to tell us any little thing even if you don't think it's important. That will help with your treatment. Then you may not have to stay long in the hospital. If you regard staying in the hospital as just one moment in your lifetime, you'll remember it as a good experience. I'll only be able to come and see you on Sundays, so you'll have to do your washing yourself. But don't overdo it! I'll buy you lots of underweat and when we get home we must make a list of all the other things you'll need so that you can get prepared."

On the way back, we left the expressway at the Okazaki Interchange and dropped by my aunt's place (Mom's youngest sister). Listening to Mom's explaination about me, my eyes filled with tears.

"I'll do anything to help her get better." said Mom.
"If Nagoya University Hospital turns out to be no good, I'll look around for somewhere else that can cure her - whether it's in Tokyo or even in America."
"Anyway, Aya," said my aunt, "let's hope you get better soon. Most diseases can be treated these days and you're still young.. But you will have to have the spirit of 'I WILL get better!' If you're sloppy and weak-spirited, even the best medicine in the world will have no effect. I'll come and see you when I can. Just call me if you need me to do something for you and I'll be there tight away. So don't worry about anything and do your best!"

Than she took out a box of tissues and make me laugh by saying, "Now blow your nose and drink your fruit juice. It will taste salty if your tears and runny nose get mized in it, you know!"

The hospital stay is still two months away. But I want to say, "Time, please stop!".. and, at the same time, "Aya's disease, please stop !"

"Aya, your high school life won't be easy," Mom said to me. "Your everyday actions are restricted and you'll be trated differently from the other students, so you may have more pain than pleasure. But remember that everyone is living with some sort of difficulty. You'll just have to live facing up to your difficulties. You shouldn't think you're unlucky. It may help you to be patient if you remember that there are people who are unluckier than you are."

I understood what Mom said. I'm sure she's suffering more than I am. She's working hard thinking about those who are in trouble or suffering more than she is. Thinking about her like that, my dissatisfaction easily becomes more tolerable. I've made a resolution to keep up my spirits with hopes for the future - for the sake of my parents, for myself and for society.

I passed! Hurray! Mom and I had tears flowing down our faces. I'll summon up all my strength, make a lot of friends and do my best not to fall over!

At my request, we had Hamburg steak for dinner. I was so pleased with myself. It was as if I was playing the leading role on stage. I had to go through all that struggle when I was trying to whip my body into shape - when it wouldn't move at my beck and call. That's all vanished now. What a good feeling it is!

On the other hand, I also feel a bit uneasy. To start with, I have a handicap. My movements are becoming more awkward and I walk with faltering steps. Even when I'm about to bump into someone, I can't step aside quickly. So I'll have to walk along the side of the corridor. That's sure to attract the eyes of my new friends. It'll be discovered sooner or later anyway, so I might as well show my true self right from the beginning. I shouldn't try to hide it. That's what I'm thinking. But I'm still anxious . Will I be able to keep up with the others? And what will happen during PE classes?

I asked Mom to make some miso soup with slices of daikon (giant radish) for me this morning. I also had miso soup for breakfast on the day I took the private high school entrance examination. That time I didn't request it, but i passed that exam, so I just thought it might bring me good luck. I wonder if I'm too superstitious?

I went to the toilet twice and Mom took me in her car to Toyooka High School where the examination was being held. All the students who were flowing in one after another looked very smart and I started losing my confidence. I felt a bit anxious.

The teachers showed everyone to their examination rooms. As I was going up the stairs to the second floor, I slipped and sprained my ankle. So I had to take the exam all alone in the nurse's room. I felt so very, very miserable. To help me cam down, I put my ear against the wristwatch I had borrowed from Mom.

There was a meeting today for individual students and parents with my teacher, Okamoto-sensei. We discussed my future:
1. Ability: I'm good enough to enter a public high school
2. Health: Though right now I only have the problems of unstable walking, we're not sure how it will develop in future. So it might be best to choose a high school only a short commuting distance away. The educational system can place students at any school within a large area, so I should submit a statement of my reasons and do all the procedure in advance. Then I won't have to commute to a school far away from home.
3. I can take a private school entrance exam as a safety measure. Mom and I had decided I would only take an exam for a public high school. But we changed our minds after hearing Okamoto-sensei's advice. He said taking the exam for private school would at least be a meaningful experience for me.

I admire people with a strong personality because my way of thinking is very ordinary. To me, anyone who displays a distinct personality has great appeal. I think the society we're living today was formed by individuality and special talents being used to their fullest - like in the James Bond movies. The world is in need of people with strong personalities. But individuality is your own property. It's not something you can impose on other people. However, when everyone takes things in different ways, life gets very complicated.

Coming home from school, I met Keiko at the bicycle park. I carried my Yamato and Last Concert records and Keiko carried my heavy schoolbag for me in the basket of her bicycle. She left me at the bottom of the pedestrian bridge. She said there was something she had to do. I like that kind of honest attitude. But apparently some of the others think Keiko is heartless.

I think I've caught a cold. I seem to have a temperature. But I feel OK and I have a good appetite. However, I'm not confident about my health. I need a new thermometer because I broke the one we had. I want to check my heath in numbers. I'll ask Dad.

Aya often gets sick. She's the child who costs more than a double what her brothers and sisters cost. She promises that when she becomes an adult and is fit, she'll help you, Dad and Mom, to lead a comfortable life, She'll be good to you because of all that she owes you both.

-----

I've been thinking about lots of things while lying down, like what the teacher told us during social studies class: "Being bullied can be a good experience because it makes you stronger" and "If a junior high school student studies really hard, they'll get better results."

It's not too late to start now. I'll try and do my best ..
At the same time, my bad physical condition is worrying me.

"Don't cry, you crybaby! When you think things are hard, that's the time you are maturing as a person. If you get over the darkness, a wonderful new day will come. The bright morning will be filled with light and the birds will be singing. There will be white roses with a lovely fragrance.."

Where on earth can happiness be found? And what is happiness, anyway?
"Aya, are you happy now?"
"No way! I'm in the midst of a bottomless sadness, I'm in pain - mentally and physically.."
In fact, I'm just one step away from going insane!
Because, in a way, my condition now is like the proverbial crow that was cawing till a moment a go but is now laughing.

Summer tangerines are the only fruit we can harvest at Seiryo Junior High. When we went out to do weeding along the line of trees, some boys started making fun of the way I walked.

"Why do you walk like that? What's the matter with you? You look like a kindergarten kid."
"Ah, you're in high spirits. But you're a bit bandy-legged are you?"
They said a lot and laughed a lot, which made me angry. Of course, I ignored them. If I hadn't, I would have cried so much that my tears ducts would have dried up. But I had to try hard not to cry. Somehow I managed not to...

Today there was an incident I really felt frustrated about. It was during the PE period. I changed clothes as usual and went to the meeting place.

"Today," said the PE teacher, "we're going to run to the park one kilometer away. When we get there we'll practuce passing basketballs."
His words struck me to the heart: "Run ... passing basketballs.. " Impossible. I couldn't do that.
"And what are you going to do, Aya?" he asked.
All I could do was look down at the ground.
"Well," the teacher continued, "I think you'll have to study by yourself in the classroom, along with O-chan." (She forgotten to bring her PE outfit to school)

At once my classmate started saying things like, "Oh I envy you, Aya, being able to study by yourself..."
I was boiling inside. I felt like saying, "If you want to study by yourself, I'll gladly change places with you. Even if it's only for one day, I'd like to swap my body with someone else's. Then that person might understand the feelings of someone who can't do things even if they want to. Everytime I walk, or just take one step forward, my body feels unstable and shaky. I feel humiliated and sad that I can't do what everyone else can do. Can't you understand these feelings without experiencing them yourself? Even if you can't have the same feelings as I have, I'd like you to put yourself in my position for just a while."

However, I've had second thoughts about it. Yes, I suppose it is difficult to understand - for me, too. I only realised what it was like after I became like this...

I go to the hospital in Nagoya with my mother. (Written by Aya in English)

We left at 9 a.m. Rika, my baby sister, wasn't feeling well, but she had to go to her nursery school anyway because I was going to the hospital... poor girl !

We arrived at Nagoya University Hospital at 22 a.m. We had to wait for about three hours. I tried to read a book, but i was feeling nervous. I couldn't concentrate as much as usual because I was feeling rather worried.

"I rang Professor Itsuro Sofue (now Director of Chubu National Hospital)," Mom said, "so I'm sure you'll be all right."

But..
At last my name was called out. My heart was beating fast. Mom explained my problems to the doctor:
1. I fell over and cut my chin. (A normal person would put out their arms to break the fall, but my face hit the ground directly.)
2. The way I walk is unstable. (I can't bend my knees much.)
3. I've been losing weight.
4. My movements are slow. (I've lost the ability to move quickly.)

Listening to her, I was amazed. Mom is always moving around so busily, but now I know that she's been observing me very carefully! She knew everything about me.. That made me feel more secure. So, the things I've secretly been worried about have been conveyed to a doctor. My worries will be solved.

I sat on a round char and looked at the doctor. He was wearing glasses. He had a gentle look and a warm smile, so I felt relieved. He asked me to close my eyesm strech out both my hands and try to make my forefingers meet. Then I had to stand on one leg. Then I lay down on a bed and he stretched and bent my legs. He patted my knees with a hammer. I was totally under his thumb. Then the examination was over.

"Now, let's take a CT scan," he said.
"Aya," said Mom, "it won't hurt you or anything. It's only a machine that checks your brain by cutting it in round slices."
"What! Cutting my brain in round slices?"
That's a very serious matter to the person being scanned! A big machine slowly came down from above. My head was completely covered. It was as if I was riding in space. A man in a white frock said, "Lie down still and don't move." I lay still just as I was told. Then I began to feel sleepy.

After the examination, we were kept waiting for a long time. Then we got some medicine and went home.
I have added one more order to my list:
I won't complain about taking medicine - even if it's enough to fill up my stomach- as long as it makes me better.

Dr Sofue at the prestigious Nagoya University Hospital, I beg you, please help to save the life of Aya, the budding beauty. You told me that I should only go and see you once a month because the hospital's far away and I have to go to school. Well, I definitely come and see you, and I will do whatever you tell me to do. So please make me better, I beg you !

Illness Creeping Up

Signs of Something
Recently, I seem to be getting skinnier. I wonder if it's because I've been skipping meals to do all my homework and independent research? Even when I think of doing something. I can't carry it out, and that gets me into trouble. I blame myself, but I can't make any progress. I'm just wasting energy. I want to put on a bit of weight. I'll try to take action starting tomorrow so that my plans won't be ruined.

It was drizzling. "I hate going to school holding an umbrella as well as carrying my heavy school bag and another bag." Just as I was thinking this, my knees suddenly seemed to collapse and I fell over on a narrow graveled road. I was only about 100 meters away from home. I banged my chin hard. I touched it gently and found my fingers were covered with blood. I picked up my bags and umbrella that were scattered on the road and retraced my steps back home.

"Have you forgotten something?" Mom callaed as she came out into the entrance hall. "You'd better hurry up or you'll be late!... Oh dear, what happened?"
All i did was cry. I couldn't say anything. Mum quickly wiped my bloodstained face with a towel. There was some grit in the cut.

"I think this is a job for the doctor," said Mom. She quickly helped me change out my wet clothes and firmly applied a plaster to the cut. Then we jumped into the car. I had two stitches without any anesthesia. It was all a result of my clumsiness, so I tried to bear the pain with my teeth clenched. But, more important, I'm sorry, Mom - because of me you had to take a day off work.

Looking at my painful chin in the mirror, I wondered why I didn't put my arms forward to break my fall. Was it because my athletic ability is so poor? I was pleased, however, that the cut was at the back of my chin. (If it had a scar in some more visible place, the future would be a closed book for me in terms of marriage.)

My physical education scores so far:
First grade at Junior high - 3
Second grade - 2
Third Grade - 1
How disappointing ! Lack of effort? I was hoping to gain a bit more strength with the circuit training during the summer holiday. But i failed. I didn't do it long enough. So I suppose it's not surprising. (Of course it isn't! = The myster voice of my other self)

-----

This morning, the sunlight and a pleasant breeze we coming in through the yellow lace curtains on the kitchen window. I was crying.
"I wonder why it's only me that's so poor in athletic abilty?"
In fact, we had a balance beam test today.
"But you're good at other subjects, so it's all right, isn't it?" Mom said, looking down. "In the future, you can make the most of your ability in your favorite subject.
You're very good at English. So why don't you try and thoroughly master that? It's the international language, so I'm sure it'll be useful in the future. It doesn't matter if your score for PE is only 1... "
I stopped crying. Mom made me realize that I still have some hope.

I'm becoming more and more weepy. And my body won't move the way I want it to. Am I getting in a fluster because I'm lazy about doing my homework, which I could only finish if I spent five hours a day on it? No, something inside my body seems to be going wrong.

I'm scared!
I have a feeling that tightens my heart.
I want to get more exercise.
I want to run with all my might.
I want to study.
I want to write neatly.

-----

I think Paul Mauriat's Toccata is really nice. I've grown very fond if it. When I play it while I'm eating meals, the food tastes so good, it's like a dream.

-----

Now about Ako, one of my sisters. Up to now, I've only noticed the ill-natured side of her character. But now I can see that she's actually very kind. Why do I think that? Well, I'm very slow when we walk to school in the morning, but she always stays with me. My brothers just walk on ahead and leave me behind. But when we were crossing a pedestrian bridge, Ako took my school bag off me and said, "Aya, you'd better hold the handrail while you go up."

-----
I'm pretty well out of the summer holiday mood now.
As I was going upstairs after clearing up the dinner things, Mom said "Aya can you come and sit down for a moment?" She looked very serious. I became tense, wondering what she was going to tell me off about.
"Aya," she said, "you seem to be walking with your upper body leaning forward and you're rolling to the right and left. Have you noticed that yourself? I've noticed you've been doing that for a while, and it's beginning to worry me. Shall we go to the hospital for a checkup?"

"... Which hospital?" I asked after a pause.
"I'll find one that can give you a thorough examination. Leave it up to me. Allright?"
My tears flowed nonstop. I really wanted to say, "Thank you, Mom. I'm sorry for causing you such anxiety." But I was stuck for words.

Since Mom has suggested I should go to a hospital, I've been wondering if there really is something wrong with me.

Is it because my athletic ability is so poor?
Is it because I stay up late?
Is it because I eat irregularly?
I couldn't help crying as I was asking myself those questions. I cried so much, my eyes hurt.

Dad: 41 years old. He's a bit impetuous, but sweet.
Mom: 40 years old. I respect herm but she's tough when she goes right to the heart of the matter.
Me: 14 years old. At the start of adolescence. A delicate age. A crybaby, in short.
Emotion incarnate. Simple girl. Loses temper easily, but also laughs easily.
Ako: 13 years old. I have a sence of rivalry with her in terms of both study and personality. But these days she has me under pressure.
Hiroki: 12 years old. A tough customer. Formidable. He's younger than me, but he sometimes seems more like an elder brother. He's also Koro the dog's foster father.
Kentaro: 11 years old. He has a rich imagination but can be careless
Rika: 3 months old. She has Mom's curly hair and Dad's face (her eyes in particular, the hands of the clock pointing to eight twenty). Very cute !

My Family

Mary Died
Today is my birthday. How big I've grown! I think I should thank Mom and Dad. I'm determined to get better grades and be much healthier so that i won't dissapoint them. That's part of the reason why i want to enjoy the prime of my life. I don't want to have anything to regret in the future. I'm going to a school camp the day after tomorrow. I must study hard to finish my homework, otherwise I won't feel free.
Keep it up, Aya!

Tiger, the neighbours' fierce dog, bit Mary on the neck and she died. Tiger is big, but Mary was very small. She went up to him wagging her short tail to show she was friendly.
"Mary, no! COME BACK!" I shouted desperately, but...
She died without being able to cry out. That must have been so frustrating for her. If she hadn't been born a dog, she wouldn't have to die so soon. Mary, I hope you'll be happy wherever you are!

Our new house is finished. The big room on the east side of the second floor is like a castle for me and my younger sister, Ako. It has a white ceiling and the walls are brown veneer. The scenery through the windows is different from what I'm used to. I'm happy we have our own room, but a big room makes me feel a bit lonely. I wonder if I'll be able to sleep tonight?

Starting in a fresh mood!

1. I should wear T-shirts and pants (more comfortable for moving around in).
2. Daily tasks:
* Watering the garden
* Weeding
* Checking if there are any insects on the backs of the leaves of the tomato plant i planted
* Checking for lice on the leaves of the chrysanthemums and getting rid of any I find at once
3. I mustn't neglect my studies!
4. Besides all these, I should record what happens every day in my diary.. without fail.

I order myself to do all these things.