Shopping

My mom was making phone calls to different places and suddenly shouted from downstairs, “Let’s take Aya to Yuni ( a shopping center).  They said they have a wheelchair so Aya, you can go too!”

It was during spring break and we were all at home. After taking forever for me to get ready, they put me in the car and off we went. We arrived at Yuni in 15 minutes.

With my favorite pochette hanging from my neck, I looked around the apparel section with my sister pushing the wheelchair from the back.

Everything looked interesting to me.

There was a pretty skirt and I wanted to wear it.

Since I always crawl, wearing a skirt would hurt my knee so I have always worn pants.

Wearing a skirt was a dream for me.

I grabbed some courage and pointed to the skirt.

My mom said, “It would be nice if you had one. It’s going to get warmer soon,” and bought me the skirt.

I was really happy. If I wore a white laced blouse with this flower printed skirt, and stood up straight and tall, I wonder if everyone would tell me I look cute. Just once…I would like to be told that.

We bought a lot of underwear, socks, and towels for my new life in the dorm.

Suddenly, I became sad. I’m going to the dorm in a few days and live away from my family. I had promised myself not to cry anymore, but I just can’t help it. Be strong. Be a strong person who can overcome anything.

Sidenote: Pochette is something perhaps many people are not familiar with. I think it is a more common word in Japanese, but it is a small bag carried around the shoulder. Below is a sample picture of a pochette.

-Kiwi

Direct Appeal

She is small with short hair, and glasses. She is always wearing a white robe, but she wears earrings and rings that are not too fancy, which makes her look fashionable but not too gaudy.

She has been my doctor since I stayed at Nagoya University Hospital. When she transferred to Fujita (Nagoya) Hoken Eisei University, she contacted me so I changed hospitals with her.

She is quick-minded, prompt, and quick with anything she does. She is reliable and sometimes she would drive me to different universities for physical examinations. She is an amazing person.

When I asked her, “What high school did you graduate from?”

She simply answered, “Meiwa.”

Even I knew that Meiwa is a school for the elite. She told me that after Meiwa, she entered Nagoya University. I love her because she never boasts and is always so warm. When I’m with her, I cannot be my lazy self.

For a year and a half, I have continued to go to the hospital and at times was hospitalized, but I knew that my illness was getting worse.

Maybe because the cells in my cerebellum were being destroyed, but my body movements have become awkward and I have trouble moving my legs, since my knees would not bend.

I can’t even talk loud anymore, and can only say one word at a time. I can’t even laugh Wahahaha and when I try to, it comes out as Wawawa.

I still tend to swallow accidentally without chewing and I am losing my strength to move my tongue.

Next time when I go to the hospital, I’m going to ask the doctor, “Without hiding the truth, please tell me what's going to happen to me.”

It’s scary to ask, but I need to think about my future. Depending on her answer, I might need to re-think about how I'm going to live my life.

Hi everyone, I'm sorry I'm late with my update again (^^;) As you can see from this entry, Aya's illness is getting worse, but she is trying to accept it. I really admire how she is able to think about her future and how she wants to live her life to the fullest(o^^o)

-Kiwi

Reflecting and Regretting

The time has finally come!

It’s March 22. The closing ceremony breezed by and I went inside the classroom. Everyone wrote me farewell messages on a paper.

I wanted to shout saying, “Thank you for always helping me! I will never forget you all. I’m going to be transferring to a new school, but I will try my best. I hope that you all won’t forget me, Aya the handicapped girl,”….but I couldn’t stop crying.

S-chan, Y-ko-chan…

“It’s a hassle sometimes trying to help Aya all the time.” My teacher told me what my friends had said one day.

I don’t know why I never realized it. I was always only focused on myself. It’s all my fault that I have made everyone feel this way.

 Aah don’t say anything anymore! I’ve already reflected on my wrong-doings enough…

During the Star Festival, I wrote “I want  to be a normal girl” and my sister got mad at me and asked me, “What makes you so different from a normal girl?”

I wanted to fight back saying, “What’s so wrong about writing the truth?”

I realized that it’s very difficult to admit that you are handicapped, even though you know that you are.

Sidenote: Star Fesitval, known as Tanaba in Japanese is celebrated on July 7th. People usually write their wishes on a small piece of paper and hang it on a bamboo. For more information --> http://en.wikipedia.org/wiki/Star_Festival 

-Kiwi

The Farewell

4 more days until the closing ceremony.
It seems like they are folding 1000 cranes for me (This is just my guess).
I will always keep it in my heart that I-san and G-san were folding those cranes for me, so that I will not forget even if we have to say goodbye.
It makes me happy that they are wishing for my happiness...but I wanted them to say, "Aya-chan, please don't go!"
My heart is full of hatred to my friends who didn't say that to me and to myself, for not trying harder so that people would say that to me.
But...to keep my promise with Mrs. Motoko (which is to not think badly of my friends), I didn't say anything.

When I told my mom, she started singing, "Forget about the past. If you keep looking back, you won't be able to move forward. Walk three steps forward, then two steps back.Life is～"
I started to laugh.

A friend gave me a cycad fruit. It's color is orange.
I love this color...it's such a really warm color.

I talked with Mrs. Motoko for the last time.
She listened to all my complaints.
"Don't be so harsh on yourself. Life isn't just about studying and school. What can you do if you're thrown into society when you only have academic skills? Studying was merely an escape route for your. You've avoided carrying your own bag, and washing dishes and only concentrated on studying... am I right? That's why your view of life is so narrow. You need to create a revolution. You should be happy that you were at least able to go to a normal school for a year. At the handicap school, there are children who have lived in hospitals all their life. Compared to them, you've been hit with the harshness of society, so you know not to always rely on people. For a 16 year old, you have an immature side and a mature side. You're an unbalanced person. This is because you haven't experienced enough of life for a 16 year old. It's not too late yet, so don't give up. Go and gain lots of things at handicap school, that you couldn't gain at Higashikou. You can even cause mischief. You can do it! But, it would have been better for Higashikou if you would have stayed."

I was really thankful to be able to meet such a great teacher. I'm going to tell her "goodbye" with a big smile.

When exams are over, there's no school until the closing ceremony.
My parents planned a small party for my friends, and all the people who helped and supported me this year.
We talked, played poker, and played gomoku narabe.
S-chan gave me a coffee cup, Y-ko-chan gave me a music box, and A-ko-chan gave me a dry flower.
My mom each gave us a fountain pen saying, "Goodluck with your studies and I would be happy if you would sometimes remember Aya when you look at this pen."
We all became silent. When I realized that the time for "goodbye" had finally come, my tears started to flow, but I  tried hard to keep it from falling. I had promised myself to not say goodbye in tears.

I had a really fun time, but once everyone left, I became lonely and cried like a baby.

-Kiwi

Organizing My Feelings

The class distribution for the junior class was announced.
My name is no longer there.
I was able to make a decision, but it still makes me sad.
Only if I could just be healthy...

Get over it already! How long are you going to stay like that!?
You have to be able to have confidence that you yourself CAN overcome this illness!
I can't write as well anymore...is this a sign that the illness is getting worse?

It's okay if you fall.
You can just get up again.
Why don't you look up at the sky, while you're down there.
The blue sky spreads across above you.
Can you see it smiling at you?
You are alive.

I cried in front of my friends.
It made me very sad when my club teacher asked me, "Are you quitting school?"
Does it make you feel good to be crying? Not only does it make the people around you feel bad, but doesn't it make you feel empty?
Then stop crying! You're cuter when you smile.
And if you have something to say, just say it before you start crying!

Right now I feel worthless.
I'm gonna skip shower and go to sleep.
Tomorrow, I'm going to the handicap school for an interview.
Make the decision and don't cry anymore.

I continue to hope and pray to become someone great.

Handicap school...this name has a dark image...
Why can't it have a different name?
There may be nursing help inside a school, but there are no nursing society...
Conference with my teacher.
"I think that you could continue your studies at Higashikou with this small degree of handicap.... I wonder if something can be done if you don't have trouble with actually taking the classes. Are you really satisfied? Because the average of the academic ability at a handicap school is pretty low."
I cried inside myself, "I don't wanna hear it anymore! I don't want any sympathy!"

I actually had a slight hope when Dr. Yamamoto called the Board of Education. But their answer was that they have left the decisions up to the principal.
My mother said, "We were told that Higashikou cannot take care of her any longer, so there's nothing we can do about it. Coming to this decision was very difficult for Aya, but I want her to have hope and start a new life. Aya herself has already made the decision. Please carry on with this decision that we have made."

Honestly I still had a connection with Higashikou, but listening word for word, to what my mother was saying, my feelings became one with my mother.
As long as she is my support, I will be able to go on.
God, I will listen to my mother. I felt a deep love in her action. I'm going to become a better and stronger person.

On the way home, I stopped by Emi-chan's house. I had called before I went, so my aunt had great food ready for me, and when I got there, everyone was waiting for me.
I ate until I was full, and I was so sleepy I couldn't even think about studying.

I was planning to do my best on my last final exam, but so many things were happening that I couldn't concentrate.
I couldn't help  but to think about the "flowering quince" inside the classroom...the color is really pretty, but why was it given such a name?

Ms.Motoko said,
"Whether you choose to go to handicap school or stay at Higashikou, the ultimate decision lies in your hands. That's what it means to live."
But I thought to myself,
"I have no choice, but to go to handicap school. I wanna stay in Higashikou, but the school won't let me, because they say I can't keep up with the school life. So, it's not really my decision. You're just saying things in a nicer way."
Ms.Motoko continued, saying,
"1. Stay clean. Be very strict to yourself and don't let anyone think that handicap people are dirty.
 2. Treasure your friends.
 3. In the future, you should master typing.
 4. Don't forget about Higashikou."
I didn't tell her, but I kept repeating what she said and how I felt, over and over again in my mind.

The people around me surround me, attacking me with the word "handicap." I forced myself to think that the handicap school was the only place for me, trying to calm myself, and made the decision to transfer.
I looked back a couple months since the path of handicap school came about.
Emotionally, I had made the decision, but I realized that nothing was really organized in my mind. That's why my emotions were always so unstable.

I read the Bible. I accepted Jesus' words and calmly thought to myself.... I'm sorry God, I still lack faith. It's very difficult to become a devout Christian.
Alright, I will put my feet firmly on the ground and think rationally.

<Advantages about Higashikou>
1. Allows people to see that there are people like me through our daily school life. (Gain the kindness to help each other)
2. Having many complex by comparing my handicap self with the normal healthy people, becomes a power for me to try harder.
3. I can learn alot from my teachers and friends.

<The drawbacks>
1. I cannot keep up with the class schedule.
2. I have the habit of relying on my friends and teachers.
3. I only hang out with the same group of friends and cannot join other larger groups.(My abilities has limitations).
4. I become a burden to people because I cannot help during cleaning time.

<Advantages about going to a handicap school>This is just my image.
1. I can live independently.
2. Become less of a burden to the people around me.
3. I can think about my future.
4. Gain skills needed in life.
5. Between the handicapped students, we will be able to understand each other.

<Drawbacks about going to a handicap school>
1. Start to use the term "handicap" as an excuse.
2. Have less opportunities to interact with my healthy friends.
3. My learning speed will slow down.

-Kiwi