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.