Chapter 5 - Ichi Rittoru No Namida (Part 9)

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.

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Chapter 5 - Ichi Rittoru No Namida (Part 8)

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.

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Chapter 5 - Ichi Rittoru No Namida (Part 7)

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.

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Chapter 5 - Ichi Rittoru No Namida (Part 6)

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 might 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 sweat pants. 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 because I felt uncomfortable about my sweat pants. I said nothing and tried to do it many times by myself.

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Chapter 5 - Ichi Rittoru No Namida (Part 5)

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 tooth 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!

"From now 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.

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Chapter 5 - Ichi Rittoru No Namida (Part 4)

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?

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Chapter 5 - Ichi Rittoru No Namida (Part 3)

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. Handwork: 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 was paralyzed 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.

Whenever 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. The 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 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.

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Chapter 5 - Ichi Rittoru No Namida (Part 2)

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 right) 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 said, "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."

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