My new life, first time away from home is starting.
I'm in a room with a lady who seems to be around 50 yrs old. My mom said, "Pleased to me to you," so I bowed my head with her. She looked like a quiet lady with lonley eyes. I was nervous not knowing what kind of life was ahead of me.
In the afternoon, I went on a walk with the lady. We sat on the bench under the cherry blossom tree. The sunlight looked like it was dancing between the leaves. Since I'm really near-sighted, I couldn't see clearly but I sensed "beauty" within the green and the light.Then, I sensed "oddness" in the leaves that were being blown, casually by the wind.
I've gotten used to the life in the hospital, but lgihts out at 9 and dinner at 4:30 is a little too early.
The pace has changed, and a day seems to run past me.
I have to go through lots of tests like the electromyogram(owww this hurts!!), electrocardiogram, xrays,and hearing tests.
I am taken from one place to the next in this big hospital, which is easy to get lost. I just can't stand the dark hallways. It even makes my mood dark.
My doctor, Yamamoto Hiroko sensei(now a professor at the Fujita Hokeneisei Daigaku in the Shinkeinaika) said that finally, I'm gonna get the shot that's gonna make me better. To see the before and after of the effects of the shot, we recorded my walking, walking up the stairs, buttoning, into a 16mm camera.
I wonder what I'm going to be when I grow up, or actually what can I be?
The 3 requirements that I have to meet:
1. Something that does not involve my body.
2. Something that I can do using my brain.
3. Something that gives me a decent pay.
This is hard. I wonder if there is such a job that meets all these requirements.
Some number of young doctors play around with me. Stand on your tiptoes! Close your eyes! Can you do this? Then something about my pelvis... After all that, they ask me "Was it fun?" I can't deal with this. I wanted to yell, I'm not a guinea pig, so stop it!
Sunday, the day I've been looking forward to is finally here. My mom and my two sisters came. We all went to the roof to do the laundry. The blue sky was really pretty. The clouds were white and pretty as well. The wind was a little warm, but it still felt good. It felt like I became a human again. They took some spinal liquid. My head hurts. It hurts terribly. Is it because of the shot?
Michan's family(my mom's younger brother's family) came. My grandpa's eyes were red. I was going to tell him, but I couldn't and so I was staring...then my grandpa said, "Do I look weird? I got a tan from working and I stayed up late last night."
It was so black that I felt bad. His eyes were like a rabbit. It looked like he was crying.
"Aya do your best. I'll bring you some good food next time. What do you want?"
"I want a book. Sagan's 'Hello sadness' I've been wanting to read this."
I went to the Physiotherapy room underground.
I'm going to take a test from PT.Kawabashi and Imaeda (PT=physiotherapist).
At that moment I said something stupid. I can't believe I told them that I like Japanese and English and that I have lots of confidence in these subjects, and how my grades were in the top of the class. This should be the last time I boast about my grades...it makes me look more miserable and will make me want to rob a bank or something. In any case, you can't really determine how smart you are by the grades on a report card.
PT. Kawabashi said he was a troublemaker when he was a student.
Actually, I think that's better...it's much more healthy.
I'm still so young and look at my body...
I felt so miserable that my tears started to fall.
I shouldn't say anything anymore. After writing what I wanted to write, I felt alot better.
The reason why I study so hard is because this is the only thing I'm good at. If you take studying away from me, all that's left is this useless body. I don't want to feel this way.
It's sad, and harsh, but this is reality.
I don't care if I'm stupid, I just want a healthy body.
Research
1) Test. I had to move my hands according to the song, twinkle twinkle little star.
Before getting my shot R(right) 12 times L(left) 17 times
3 mins after my shot R(right) 18 times L(left) 22 times
5 mins after my shot R(right) 18 times L(left) 21 times
2) Rehabilitation
1. I had to stand on my hands and knees.
I had to move my body by keeping my balance(like making half a circle)
[rotating my pelvis]
I had to bend my leg, rotate my pelvis, then go on my hands, rotate my pelvis again, and then lift up my hands.
*I'm not supposed to let my feet go, and my shoulder blade isn't suppose to move inwardly.
2. Reflex movement
As soon as I lift my leg, I have to catch my body with my hands. This will help me when I fall.
*My shoulder blades moved inwardly, and my weight pulls me back.
3.Exercising by swinging my hands
I have to swing my hands back and forth and watch how my pelvis moves.
When my right hand is in the front= my right pelvis has to go back
When my right hand goes back= my right pelvis has to come forward.
So basically, I have to alternate my hands and feet when I walk. For me...
When my right hand is in the front= my right pelvis goes back
When my right hand goes back= my right pelvis goes back
This is weird. Both my leg and hand goes back at the same time.
4.After standing on my legs and knees, I have to stand on my knees alone.
5.Making it right. I had to lean back my shoulders and straighten my body by lining up my knees with my spine.
6.I had to practice crawling.
Putting my right hand out->Putting my left feet out->Putting my left hand out->Putting my right feet out
I have to keep my legs straight when I put it out.
Walking normal is a really hard thing...
7.Getting up
Dr. Yamamoto said to me, "A boy named K-kun is going to be hospitalized from today. He has a similar illness as you."
I passed by him in the hallway.
He was skinny and seemed to be in the 6th or 7th grade. He looked like an innocent and cheerful boy, who didn't seem to let his illness bother him.
I told him inside my heart, "I hope the shot will help you. Get better soon."
After getting the shot, I got a headache and became nauseous, but maybe because the medicine is actually working, or I'm getting used to it, there is less pain.
They recorded my voice. I wonder if they're testing my throat and tongue.
Rehabilitation is very important! That's what Dr. Yamamoto said. I knew I had to try my best, but it was really hard. I'm not normal...mom, I could almost cry.
We went up to the roof again and they took pictures of me with the 16mm camera. My body felt miserable.
PT. Kawabashi, I can only walk like a robot. This is sad. While we rested, PT. Kawabashi told me one of his childhood stories.
"I peed on a teacher's head from the roof and got beaten up." Wow...that's a dynamic prank... I can't do the same, but this feeling of wanting to do something, boiled up inside me. He also told me the trick to catching a cicada(both female) that's on a tree. He called the cicada's shedding of the skin, semi-nude! I thought to myself... I guess he's a guy too.
I got a fever. 102 degrees. Am I going to die? No! I can't lose to an illness! I miss my mom and family.
Man~ every time I try to take a step forward this always happens! It seems like this mental and physical unbalance is gonna last forever. I'm scared of getting old. I'm only 16 years old.
I only have couple more shots to go. Then I'll finally be able to get out of the hospital...supposedly.
Usually, it's a happy thing but it's different with me. When I first started the shots, I suffered from the side effects(nausea/headaches). My doctor said that the shots helped, but my expectation of being able to walk as I used to, doesn't seem like it was met. Now I have another notebook to keep other than my school diary... the notebook for physically handicapped people. My illness is where the cerebellum's cell takes over me physically, making it hard for me to move, and this illness was discovered about one hundred years ago.
Why did the illness choose me?
The word fate isn't a good enough explanation!
2nd Semester
My mom's teaching: It's okay to be slow, it's ok to make mistakes, the important thing is to try your best.
I wanted to say, I'm always serious! My behavior may be....but when it comes to my inside... i felt a little sting.
After the opening ceremony, my mom and my teacher had a conference.
1. Although the treatment during the hospitalization helped me a little, recovery is difficult, since it is a complicated illness.
2. My mom asked for consideration for I might trouble people around me when I walk from one class to the next, and that problems may rise, but to let me do as much as I can.
My mom's idea.
1. To take the textbook apart and only bring the necessary pages. Take only one notebook and put tabs, to separate the subjects.
2. Change my school bag to a backpack.
3. To take the taxi to school, because the rush hours in the morning is dangerous. For going home, I have to choose to either take the bus or the taxi, depending on my condition.
"Don't do anything rash. I already talked to the taxi company, so you don't have to pay any money," said my mom.
Gosh, how much of a money eater bug am I going to be...I cause so much trouble, I'm sorry.
The evil 13th
I rode the bus from the gate of the school. I had to switch onto another bus so I got off at Asahibashi, crossed the sreet, and walked to the next bus stop. The light turned green. It's sprinkling. An elementary school boy shared his umbrella with me. I tried to walk fast trying to keep up with his pace. All of a sudden, I fell flat forward. Blood flowed from my mouth and stained the wet asphalt in red. There was so much blood gushing out, that I became worried that I might die, and started crying. The lady from the bakery in the corner of the steet rushed out and helped me get up. She let me inside and wiped my mouth with a towel. She took me inside her car and drove me to a nearby hospital. She saw my student notebook, so she called the school for me and my teacher came. After the treatment, my teacher took me home. Lady from the bakery, teacher, thank you.
Aya's lip was swollen and her 3 front teeth were broken and gone. When I touch it with my hankerchief, it still stains in red. I'm a "girl." My 3 big front teeth are gone, and now I look ugly.
My illness is worse than cancer!
It stole the beauty of my youth.
If I didn't have this weird illness, I could have had a love life...I just want someone to rely on.
I just can't take this anymore!
Kaoru no Kimi ([To my brother...]Ikeda Riyoko) said "I love you!" and left the person he loved. Do I not have the freedom to love or be loved by somone?
In my dream, I can walk, run, and move freely... In reality, I can't do any of that.
When I read the part where Nanako starts to run, it makes me think how much I wish I can do that. Is this servile?
I slept a whole day thinking about when I fell. K-ko-san called me asking "Are you okay?" It made me happy. I probably have to be absent for a while.
I woke up at 7:30. My sister Ako-chan is going to Nagoya. She looked so cute that I kinda sulked.
It's good to wake up early. I got to eat the last cream puff. It was so good with the cream spreading through the inside of my mouth. It's hard to eat without my front teeth. I had to hold my mouth close to keep it from coming out.
I have to start going to the dentist from tomorrow. I want to hurry and be the old Aya again. I put the mirror away, which used to be on my desk.
I was reading a knitting book with my mom. This white dress that my mom used to knit for me when I was little was on there. "Mom, did you read this and make it?"
"Yupp, remember how you wore this on New Years with a pretty hair band and took a picture in front of the front door?"
If I was healthy, we would be talking happily saying "Oh yah~ back then..." but it would get upsetting so we ended the conversation there.
About my future
My mom and I talked about my future.
According to my mom, "Unlike people who cannot see or are handicapped, the things you were able to do before doesn't leave your mind. You think hard about why you can't do it anymore, and your emotions come out. So it always starts with the struggle with your mind. Even if others may view it merely as a machine-like radio exercise, its actually a struggle with your mind, it's a training. Aya, I think that as long as you live every day to its fullest, you'll have a future. Aya, you cry alot, and when I see you cry, I feel so sorry. But looking at reality, you have to understand where you are right now and make your life full, or else you'll never live with your feet on the ground. Mom and your siblings will help you with things you absolutely cannot do. But when we talk about our opinions, or argue we're straight forward aren't we? That's because we think of you as a real live normal person and a sister. So take it as words full of love that will help you grow stronger mentally. This is a training as well, so that you will be able to go on when someone tells you something that stabs you in the heart. You learn love, and love what you know...basically you're surrounded by love and knowledge as the name of the place where you were born, Aichi-ken."
As I listened and took in the fact of my illness, I thought I should start thinking about my future.
"I want to be a librarian. To do that, I wanna go to college. Then I can get a degree as a social worker..."
"It'll be hard to go out. You should think about something you can do at home. For example, translating."
"I wanna write a novel , but my life in society is pretty poor so I guess that won't work."
"You can decide that later, but for now do what you can do right now, and put the effort! yes the effort."
"Okay, I guess the only thing I can rely on is my scholastic ability."
Friends
I saw the sunset.The big red....
It quickly sank like a small sparkler firework that falls quickly, but it had a clear brightness to it.
The color was really beautiful. It was the color of an apple. Y-ko-chan and I said "Isn't it so pretty?" to each other and we're speechless after that. We saw a trail of an airplane shining in the red sunset.
I think Y-ko-chan is a really good person.
When I told her I wanted to study at her house, she strictly said no. I was so sure that she was going to say yes.
If I was in her shoes, I wouldn't be able to turn her down, and I wouldn't be able to study at my own pace, later regretting that I had said yes.
Basically, I lack self-control.
If I said that my physical handicap and my self-control is connected, would that be considered an excuse?
It makes me happy that there is someone that can say what they think and that there is someone who listens to what you have to say.
Friends treat each other equally so I'm grateful.
S-chan told me, "I started reading because of you."
That made me feel happy. It's okay if I feel that I wasn't just a trouble to my friends...right?
"Aya-chan, you were crying alot that one time remember? You were so cute."
"Really? Wow... no one has ever told me that before. But I saw myself in the mirror when I was crying before...and that wasn't a pretty sight."
"Well, I didn't see your face. The way you cried was cute."
"Haha that was harsh!"
What was cute wasn't my face, but the atmosphere I gave when I was crying. We both laughed.
Friends are so cool. I wanna be with them forever.
Agony
A thalidomide lady gave birth to a healthy baby girl. She changes the diaper and breast feeds, using her feet. I'm not sure if I'm suppose to feel happy for her, but only worry comes to me.
The Achilles tendon on the right leg feels stiff. I became depressed.
The most difficult thing for me is walking from one class to the next. I have to accept the help from classmates or hold onto something as I walk through the long hallways and stairs. It takes so much time, that I make my friends late to class.
Lunch time is a hassel too. Everyone finishes in like 5 minutes. I only get one bite or two in 5 minutes. Not only that, but I even have medicine to drink. When I feel like I won't finish eating in time, I drink down the medicine, look around, and if I see that there's someone else still eating, I try to eat as fast as possible. I wonder how many times I was able to finish eating my lunch. I feel bad not being able to finish the lunch that was made for me, but I just don't have enough time.
When I try to eat the leftover at home, "Give it to Koro. You can eat alot at dinner."
Aww what a waste. My lunch is like Aya+Koro.
Y-ko-chan and S-chan always helps me like they're my shadow.
"Sorry for always causing trouble."
"We're friends aren't we?"
This really makes me feel alot better.
"Friends are equal." But not always. Especially for me, I have to be carried and such or else I cannot survive school life.
I finally understand why the teachers sourly tell me, "Put in more effort to walk on your own."
There is only one road for me.
I don't have the right to pick my options. I can never go onto the same path as my friends.
If I make myself feel better by thinking that I'm going to walk the same paths as my friends, my own path will disappear...
I wanna go somewhere...
I wanna hit something really hard, yell and scream like crazy, fall down laughing....
Where I want to go.
Library, movie theatre, cafe(I wanna sit in the corner seat and drink lemon squash). But in the end, I can't go anywhere on my own. I feel so pathetic, miserable, and can't do anything about it, that I just cry.
I'm a big baby. But I can't help it. A crybaby and I have been together for 2 years now. Something little can't tear us apart.
Now, I can cry without making any noise and my nose won't turn red as long as I don't cry too much. There's nothing good about crying. It only makes me tired, makes my eyes puffy, plugs my nose, and takes away my appetite...
Lately I've been picking fights with people. Relationships with people are complicated. It's not like someone is wrong, but it just becomes worse without realization. I guess it's like my sickness. *tears*
My Diagnosis
I can't make loud noises anymore. I dunno if my abdominal muscle got weaker or if my breathing capacity is getting smaller.
Maybe because I'm limited with where I can go, but I don't even know what I want anymore. But... I want to do something. I wanna do something so badly that I can't stand it. My hands and feet are being tightly bounded. People being nice to me is a pain for me.
Y-ko-chan came with me to the bathroom. I made her 5 minutes late. After my feelings of "I'm so sorry! I'm really sorry!" this frustrating feeling of "Why can't I do this simple thing on my own? I feel so stupid and frustrated!" just builds up inside me.
A victim is a human that has a heart too!
Not being able to hear is not a misfortune. It's convenient.
I want to be happy, so I have to find something that I can compete equally, with a normal person. You're only 16. You're still young so try harder!
During homeroom, we had the picking of the different officers. 45classmates, 44officers.
I didn't want to think that I was left out, so I decided to do an angel's job. I can pick up trash that's left on the ground, and even close the window. If I put myself into it, I can do alot of things.
I'm about to lose to the sickness.
No! I'm not gonna lose! No matter how hard I try and act happy, when I see my teacher, sisters, brother, and my friends walking normally, I feel miserable.
I wanted to see something that would touch my heart, so I went to go watch a marathon by myself. But, it only made me feel more depressed. I felt a melancholy feeling in "Running." My friends are going to leave me. I started to realize what a big handi it is to have a unhealthy body.
I decided to read my favorite book while sitting out during P.E.
I try to copy what I can get out from the book, "Hello Miss(Ojyousan Konnichiwa)," (Kusanagi Taizou).
Right now, I'm reading "I'm 20years old (Bokuwa 20sai)," (Oka Shinji) with the thought that I will never commit suicide.
I cannot live without thinking. I can't just simply say, "Oh well~."
Even walking....I think about what the best way of walking for me is, or if the path I'm taking isn't too rough for me, or cleaning as well... I think of ways I can do it on my own, in the most efficient way...
Even I feel pity for Aya.
But on the other hand there's good things too!
I can't go on without thinking that.
My body is becoming stiffer. I dunno if it's because it's getting colder, or because my sickness is getting worse, but I fall even when I'm holding onto something. It's too dangerous for me to go out into the road. Now my mom has to drive me to school. Before going to work, she drops me off at school. I hang onto her shoulder for support and she takes me to the shoe cupboard. While I put on the Uwagutsu (Everyone else has slippers), my mom runs to my classroom on the second floor to drop off my school bag and lunch.
Then I just slowly walk up to my class hanging onto the rail.
After school I wait until 6 'o clock at the candy shop across the street from school. The lady at the candy shop kindly told me, "You can go inside and do your homework or read."
Kids who are just going home from school, because of sports, come to the shop so it's a little embarassing, but I put up with it because there's no other choice.
I fell again while walking to my class. I got a slight cut on my right temple.
S-chan helped me up. Before I can say "Thank you," tears started falling out of my eyes and I couldn't make it into words.
The blank two hours(The time I wait at the candy shop)
It's scary how this two hours passes with me just daydreaming as I watch the people coming in and listening to their conversations. Ahh~ I'm wasting time.
When I took the bus to school, it was a pain, but I felt more like a "human."
I was walking (although my friend was supprting me).
I felt someone looking at me.
I kept on walking feeling a little uneasy.
Watching my back with arrogance and vanity, I heard a voice, "How sad...Is she stupid?"
I don't wanna grow-up Harsh words come out of my mom's mouth as I cry endlessly. Dear Emi-chan (my cousin), I love walking on the road. One friend says that she feels like a bad kid when she's alone. Another friend says that she feels most like her human-self, when she's alone just day dreaming. I wonder what my purpose of life is. I can't walk the hallway which is only 3 meters. I wanna be like the air. The good-hearted person whose kindness overflows and people realize how important she was to them, once she is gone. We had a seat change in class, and now I'm sitting in the front row. For snack, I ate baked sweet potato. It was really good. Today is open house. I'm glad my parents didn't come. I just don't seem to like the mothers. I went to parent-teacher conference with my mom. If I try a little harder in math, I would be in top class! Let's do it Aya-chan! It's 11:00. I can see the half moon smiling through the east window.
"Showing thoughts through crying is what a baby does! You're making high school students look bad!"
I became even more miserable and continued to cry (like a small lamb in the forest).
Emi-chan, why is Aya such a crybaby? Why can't I laugh naturally like I used to? I want to go back to the past!
I wanna make a time machine and ride it to go back to the past. Watch myself run, walk, roll around, and play with you... but then I come back to reality.
Do I really have to come back to reality?
I don't wanna grow up!
Time...please stop! Tears...stop falling!
Ahh...Aya just can't seem to stop crying.
It's already 9PM. Time will continue to move even if I break all the clocks in the world.
I can't stop time as long as I live.
It's not about giving up... I just can't do anything about it.
In 7th grade, I walked 5km from my house to the audio-visual center.
If I pick up flowers as I walk, and look up at the blue sky, it's not a pain to walk at all.
I loved walking more than riding a bicycle or a car.
Only if I can walk on my own...
When I'm alone...I don't like being alone, being alone is scary!
People always help me, but I can't do anything in return.
To me, studying is my source of life, but I can't find anything that is more important.
Can't a human live only with their mind?
Can't I walk using only my upper half of the body?
I wanna be that kind of person.
I need to plan out which path to take when I'm late for class. I need to becareful with my health or else I'll yawn, get a stuffy nose, and feel sick.
It's only 2:30 but it seems like the sun is setting.
I didn't notice how most of the sakura leaves from the Inari Mountain had fallen.
Oh that reminds me! The school's maidenhair(ichou no ki) tree is turning!!
Walking... by holding onto my friend's shoulders and the wall of the hallway, I fall when I look up.
I get frustrated and my tears start to drop when they look at me from top to bottom with those discriminating eyes that say "There's a handicap person."
Who would ever choose to have this kind of body! I couldn't help it, but to cry at dinner, when I was thinking about those mothers who came to open house.
I know its no use crying, I'm sorry mother.
I wonder if I can pray if I turn off the light.
Living with my healthy classmates, I sometimes feel an uncontrollable frustration. It sucks.
But, when you look at it in another way, this frustration becomes a motivation for me to study harder.
I love Higashi-kou (Aichiken-ritsu Toyohashi Higashi High School), my teacher, S-chan, Y-ko-chan, M-e-chan, I love everyone.
I also love my senpai who gave me a chocolate when I was waiting at the candy shop!
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