This is a tale about a young girl's wish to share her story. It is a message of appreciation, acceptance, and most importantly, hope-the hope for a better world. It is an honor to help to share Yukie-chan's story. You will learn of a young girlfs wish for the world to accept and appreciate everyone. Who knows? With your help, perhaps Yukie-chan's wish will change many more lives. Thank you very much. - the English translation team.
Yukie chan no Negai
A talk given by Katsuko Yamamoto
on her CD, Bessatsu Tampopo Vol.1 ? Yukie chan no Negai
Transcribed by: Mieko Tsukamoto
Translated by: Yoshiko AmemiyaAdapted and Edited by: Naoko Amemiya, Aya Tsukamoto, & Mio Tsukamoto
Let me tell you about Yukie-chan. I am a teacher at a school for children with chronic illnesses such as heart ailments, asthma, kidney disease and other conditions that make it difficult to attend regular schools. Yukie-chan was one of my students.
Yukie-chan had an illness called MS. MS stands for Multiple Sclerosis. When people with MS run a fever, they can lose their eyesight and their ability to move their arms and legs. This doesn't mean they will never see or walk again. Through physical therapy they can often regain some vision and mobility. But it's difficult to recover fully and in many cases people with MS gradually lose their vision and their ability to move their limbs. And sometimes the loss of vision and mobility is permanent. So you see, I always thought how scary it must be for her each time she had another attack, but Yukie-chan always, always recovered with courage.
Yukie-chan's name consists of two characters: YUKI for snow and Eh for painting. [It is pronounced You-Kee-Eh. Chan is a term of endearment.] She was born on December 28th on a morning that sparkled with fresh snow.
Yukie-chan had a habit of saying, gI never regret the fact that I have MS. I love myself just as I am ? MS and all.
Why? I asked.
Because there are so many wonderful things I've learned only because I have MS. Without MS, I might have been oblivious to these wonderful things. I like the person I am now, so I'm glad I have MS.
And besides, she continued. I'm surrounded by all these people I love, and I met them all because of my MS. See, I even got to meet you, Kakko-chan! It's true that I might have met other wonderful people if I didn't have MS, but I feel lucky I got to meet the people who are in my life now. I was meant to meet you, Kakko-chan, so I'm glad things are the way they are. Even if I go blind, or stop being able to move my arms and legs, or have to use a respirator to breathe, I will never regret having MS. I love myself, MS and all.
I admired Yukie-chan for being able to say such things. The things she said and the stories she told me and wrote for me were filled with wonderful messages. She always gave me energy and courage. I have here a book she wrote, called Feeling Happy. I'd like to read an excerpt from an essay titled Arigato, which means Thank you.
There's something I've decided. When my eyes stop seeing, when my legs stop moving, I will say to them, Arigato. For so long, my weak eyes have struggled hard to see and to give me pleasure. They showed me many wonderful things. They even did their best on dark night roads. Same with my legs. You wouldn't believe how far they've walked for me. We went to so many different places together. My eyes and my legs have worked hard to please me for every day possible. So when I can no longer see or walk, how dare I groan, Why? How hard these weak eyes and legs worked to make me stronger! So I will say Arigato, and thank them properly. My dear eyes, my dear legs. I love them no matter how weak they are. I'll tell them, Arigato. You've worked enough! Let's rest now. I bet they are more tired than anyone....
It goes on like this, and it impressed me very much. I think of it often. For example, I live in the hills and I need my car to go anywhere. Without it, I wouldn't be able to go shopping or get to the school where I work. One day on my way to school, my car stalled. It was a very important day: Parents' Day. I thought, Why does this have to happen on such an important day? I cannot afford to be late today!h That is when I remembered Yukie-chan's Arigato. And I realized that if it weren't for my car, I wouldn't be able to go anywhere. Day after day it takes me places, but have I ever thought about saying garigatoh to my car? Yet the moment it stops working I get annoyed and whine, gWhy?h And truth be told, it was my fault because I forgot to fill it with gas! I felt ashamed that I was so quick to put the blame elsewhere.
Another thing Yukie-chan said all the time was, Oh, that's great! Whatever happened, she'd say, That's great! I developed a habit of reporting my daily events to her by phone, in person when I visited, or by sending her a fax or an email. Yukie-chan would always say, Oh, that's great!
One day I told her, I rammed my car into something today!
She replied, That's great!
Why? I asked.
I had bought a brand new car, and that very day I was backing up and went bam, right into my fence! It was the first time I was driving the car.
It was terrible. I'm in shock, I told her.
That's great, she responded.
I had to ask, Yukie-chan, do you realize I damaged my new car?
But Kakko-chan, you don't seem hurt at all. It is good that you had a minor accident on the first day. From now on, you'll be sure to look back when you reverse.
It was true. I hadn't been looking back. What if I had hit someone else's fence, or another car, or even a person! After that, I've always made sure to look as I back up. So you see, Yukie-chan was absolutely right.
And there was another time when I was invited to give a talk at a conference for high school Japanese literature and language teachers. One particular teacher, who I'm sure treasured her own students as much as I do mine, asked the following question.
Why does the Japanese government spend so much money helping people with disabilities and people who won't amount to anything? Isn't it enough to give those people food and a place to sleep? We'd like to buy many good books for our high school students, but we do not receive enough funding. We think the government should spend more money on promising high school students who will make useful contributions to our country.
I thought this was a terrible thing to say. I told her that my students also love to study and that we, as teachers, learn and receive so much from our students just by being with them. In my speech I tried hard to explain why her thinking was wrong. I got home and realized I was quite angry.
As soon as I saw Yukie-chan, I told her, There was something that really got me mad at the conference today. A high school teacher said such inconsiderate things. If I were Hoshi Hyuma's father [a Japanese manga character known for flipping tables over in rage], I might have knocked the table over.
Yukie-chan replied, Wasn't it great that she asked that question?
Here she goes again, I thought.
Why? I asked.
Kakko-chan, you spend every day around people with disabilities. You know that people with disabilities are precious human beings and that we have wonderful gifts. But most people in our society don't understand that. I bet many of the teachers at the conference had similar thoughts as that teacher. Because of her question, you were able to give a passionate talk and contradict her impression. Isnft that right? I'm sure many people listened to you and came away thinking, 'Oh, I see now.'
I thought about how true this was and found myself feeling grateful to the teacher for asking the question. It's quite amazing how Yukie-chan's words could change my perspective. She always said, gthat's great, no matter what the situation.
One summer day three or four years ago, Yukie-chan said to me, Kakko-chan, I am tired. I just want to rest in peace.
I wondered if she was implying that she wanted to die, but I could hardly say that. This was a time when Yukie-chan couldn't lift a finger. She could chat, but couldn't move one finger. I knew it was a really tough time for her and I thought hard about how to respond.
Then Yukie-chan spoke up. Oh no! Kakko-chan, did you happen to think I wanted to die? There is no way I would think that way. You should know better!
Great! I thought.
I can't move at all and it's making me tired. When it's hot and I want the fan on, I have to ask someone. When I get cold and want it off, I have to ask again. And even though I can't move my body, it still hurts and still itches. I want to feel better. Please tell me a story to cheer me up!
Leave it to me! I said.
This is the story I shared with her.
I heard this story on a TV program and it made me very happy. There used to be a program titled Jintai 3 (Human Body 3) which aired on NHK, the Japan Broadcasting Corporation. It was a show about human genes and things like that. I liked this show.
The particular episode that made me really happy was about a malaria epidemic in an African village. Malaria is a scary disease which kills many people. Everyone thought the people in the community would die one after another until the entire village disappeared. But that's not what happened. They learned that there were some people who did not contract the disease. Doctors and scientists did research on blood samples to figure out why. Most of us have red blood cells shaped like squashed hamburger patties. Those who had not contracted malaria had red blood cells shaped like crescent moon. That type of cell is called a sickle cell, named for the curved grass cutting tool. They found that those with sickle cells did not contract malaria. The doctors then studied the siblings of people with sickle cells. They asked all villagers whose siblings had sickle cells to gather together, and they examined their blood. They found that one-fourth of them had sickle cells and also some impairments. Two-fourths of the siblings had sickle cells but no impairments. The last fourth had neither sickle cells nor the impairments. And when a malaria epidemic broke out, those without sickle cells died. The other three-fourths of the group survived.
This Jintai 3 program was a science program and many scientists appeared on the program including Keiko Yanagisawa and Takeshi Yoro. What these scientists said was that the two-fourths of the population with sickle cells but no disabilities saved the village from extinction. But for them to exist, they needed the presence of the one fourth who did have disabilities. So for example, if anyone had thought that people with disabilities are useless and should be cast off, then the other two-fourths of the population could not have been born. So we could even say that the people who really saved this village from extinction were the one-fourth of the population with disabilities. That's what they said on this program.
The next show on this program was about AIDS. Some say that human beings face the threat of extinction because of the AIDS epidemic. We do not feel that sense of urgency here in Japan, but apparently it's quite serious. But someone on the program said humans will not go extinct, because there are some people who cannot contract AIDS.
There was this man in the United States. He was attracted to men rather than women. His boyfriend died from AIDS and he assumed he would fall ill from AIDS also. But this didn't happen and he wondered why. He went to get tested at a hospital and the doctors discovered something.
The story goes back to a certain village in Spain that was hit with the plague epidemic 700 years ago. People died one after another. Only a handful of people survived. The survivors multiplied during the next 700 years to become a large population, and they found that these descendants did not contract AIDS.
The Jintai 3 program raised a very interesting idea. If the AIDS epidemic occurred only 200 years after the plague epidemic, human beings might have become extinct. There wouldn't have been enough descendants to save the human race. Even 300 or 400 years wouldn't have been enough. Apparently, 700 years was needed. The program suggested that it was as if nature knew that the AIDS epidemic would occur 700 years later, and that is why the plague outbreak happened when it did.1
In the show, Keiko Yanagisawa said that we owe the people who struggled with illnesses and disabilities in the past. Because of them, we can enjoy our health and look forward to a bright tomorrow. If those people did not exist, we would not be here either. There are people with disabilities and illnesses in our own society today. For the sake of our future generations, we must offer them our support and recognize the important roles they play. That was the message of this science program.
I was so happy to hear this so I told Yukie-chan. It made her happy, too.
What a shame that only some of us know this story. How nice it would be if many more people heard about this, she said.
That was August.
In October, Yukie-chan had a serious relapse. She lost consciousness and had to be taken to the hospital in an ambulance. I rushed to the hospital but was not allowed to see her since she was in critical condition. I prayed for her courageous fight against the illness and kept going to visit every day. It was a long time before I finally got to see her.
Finally in mid-November, her mother said, Yukie's condition has improved. Would you be so kind as to see her today?
Oh, I am so glad! I replied.
Yukie's mother continued, There's something I need to tell you. On the CT scan, Yukie's brain is completely black. She cannot see, hear, nor feel. She cannot understand anything. She will not recognize you and will not know that you are there. But since you were her favorite teacher, Ms. Yamamoto, will you come to see her?
I went in Yukie-chan's room. She was lying on a bed that could raise her upper body to a sitting position. When I walked to her side and said, Yukie-chan, I had a pleasant surprise. The last time I'd seen Yukie-chan, she hadn't even been able to move a finger. But when I said, Yukie-chanh and squeezed her hand, she squeezed my hand back with amazing strength. She knows that I am here, I thought. Her CT scan might have been black, but somehow she can sense me through her spirit!
Two visits later, Yukie-chan had regained some speech. She said, I hurt, and Teacher! She didn't say, Oh, that's great! like she used to, but I still felt sure she knew I was there.
I visited her almost every day and told her about things that happened at school. I sang Christmas songs since it was the holiday season. On December 23rd I visited Yukie-chan and learned that she had another serious relapse. I already had plans to travel on December 24th to Seoul, Korea. There was someone willing to publish my book in Korea and I had promised a year ago that I would visit during the holidays.
I said to Yukie-chan, Hang in there! Your birthday is coming up on the 28th and it's almost Christmas so I'll find you some pajamas with snow on it, okay? I'll look hard and I'll find some,h and I left her hospital room.
I headed to Komatsu airport the next day. A sign at the airport counter showed that my flight to Seoul had been canceled due to bad weather. It is almost always snowy in Komatsu in the winter but the weather was unusually fine that day. I could not understand why my flight was canceled. The explanation was that the weather was terrible in Seoul, and that was where the flight originated. I was supposed to catch the plane on its return trip. I called my editor friend in Seoul.
He said, It's very strange. The flights from Seoul to Tokyo, Osaka, and Fukuoka all departed at around the same time. Only the flight to Komatsu didn't go out. That is strange, indeed.
The next flight leaves on the 26th. I'll catch that one, I promised.
My flight on the 26th was scheduled to leave around noon. At six in the morning I was at home getting ready when the phone rang.
It was news of Yukie-chan's passing.
I had always thought that no matter how grave her condition, Yukie-chan would always manage to pull through.
When I heard the news, I felt that Yukie-chan had decided for herself that today would be her day to die. She always made decisions on her own. Even when it came to questions of whether or not to take medicine, or whether or not to be hospitalized, she always decided for herself.
Well, it's my life,h she had explained. Who else can take responsibility for my life but me? Nobody! I can stay motivated if I'm the one who made the decision. And I won't have anyone else to hold a grudge against.
That's why I thought Yukie-chan had decided to die today.
I visited Yukie-chan's home where her mother was waiting for me. She took me to Yukie-chan's room where Yukie-chan was laid. Her little niece and nephew were cheerfully playing around her. Yukie-chan looked as if she were sleeping peacefully.
Her mother said something curious to me. gI think Yukie made her own decision to die today.
I asked, Why do you think that?
She told me, gYukie was supposed to move to a bigger hospital in January. That hospital is far away and she did not want to go there. Yukie loved being home and she kept saying that she didn't want to go away. I am sure she decided to spend her birthday and New Years Day at home.
She continued, gIt is strange, isnft it? Yukie died today. Tomorrow, the 27th, will be the wake, and the 28th, her birthday, will be the funeral. She especially liked her birthday and talked about it as a very special and important day. Now Yukie's funeral will be on her special day. Isn't that girl extraordinary?
I replied, Actually, I wasn't supposed to be here today. I could come only because my flight was canceled.
Yukie-chan's mother said, Yukie must have kept the plane from flying because she wanted you to be with her now. She must have wanted to say good-bye to you here at home today rather than at the wake or the funeral. Yukie was so happy when she took that trip to the hot spring with you. She talked about it all the time. Please take her with you to Seoul.
So I got on the plane instead of staying to attend the wake and the funeral, taking Yukie-chan with me in my heart. I couldn't think of anything but her. Even though Yukie-chan had always said, I'm glad to be who I am. I will never regret my life, I worried that her life had been hard and sad. Maybe she had said that just to console herself. But then another mysterious thing happened. I found a letter written by Yukie-chan in my handbag. The letter said:
I was born today.
Born today -- not off by a minute or a second.
Had I been born at a slightly different moment, I might have been healthy right now.
To lead this life of mine, I had to be born at the exact instant of my birth.
Not a minute later, not a second later.
That's tough to do, actually.
December 28th -- my favorite, special, happy day.
What a great success that I was born on this day!
And to be born as Sunoh2 -- another great success!
Her letter helped me believe that Yukie-chan had truly been happy as she was. Still, I could not accept her death for a long time. I kept crying every day. I was just so sad. And I know it's selfish of me but I kept thinking, Yukie-chan, why did you die? Who will listen to me now and tell me, 'that's great!'? I lost my appetite and could not sleep and would just lie in bed. I was all right while I was busy teaching at school, but when I was home I just couldn't do anything. I felt hopeless and kept losing weight.
And then one day I felt as if someone patted my shoulder and reminded me of something. It was like an electric shock. Suddenly I remembered the last promise I had made with Yukie-chan. It was the day we had our final, long conversation. Yukie-chan had asked me to come to her house because she had an important request for me.
She told me, Please listen carefully to what I am going to ask you. Please, please, don't say, No. She repeated that over and over, wanting to be sure.
I told Yukie-chan, I will be more than happy to do whatever you ask me to do. You have never asked me to do a favor for you. Please say it. I will be glad to do it.
Promise!h Yukie-chan said. Kakko-chan, you once said that illnesses and disabilities are very important. You said it was even proved scientifically, right?
Yes, I said that.h
And you said science proves that every person is important, whether or not someone has a disability, right?
Yes, I said that.
Then Kakko-chan, make that common knowledge so everyone in the world knows it.
I wanted to say, How could I possibly do that?h but Yukie-chan stopped me from speaking.
No, she said. Don't say no.
She looked so serious that I found myself saying, All right. I promise. Of course, I didn't really think I could do it. In fact, I thought it was impossible.
Yukie-chan died soon afterward.
When I remembered the promise, I realized that all I had been doing was crying. I had done nothing to keep my promise to Yukie-chan. I thought, I have to write! I have to write! And I wrote three books.
The first book is titled, Honto no Koto Dakara (Because It Is True). It tells the stories that Yukie-chan told me and the things the children at my special education school helped me to understand about mysteries such as the Nazka Lines in Peru. Then I wanted to write in a different style from Honto no Koto Dakara so I wrote a fantasy called Majo Mona no Monogatari (The Story of Witch MONA) and then Kokoro no Itami wo Uketomeru Koto (Accepting the Pain in Your Heart).
I had written other books before -- these were my 16th, 17th, and 18th books ? but in the past I was just happy to get a book written. I didn't think that much about how well it would sell or whether people would read it. But this time I really wanted to keep my promise to Yukie-chan, so it was important that people read them and learn about Yukie-chan and my other students. I took Because It is True to bookstores and asked them to stock my book.
What is this all about, Ms. Yamamoto? they asked. Are you publishing the book at your own expense this time?
I told them about Yukie-chan and the promise I made.
Oh, I see. All right, I understand.
They stocked many copies and a lot of people bought the book. With Majo Mona no Monogatari I went to these bookstores again and made the same request.
This time I was told, It's really strange, Ms. Yamamoto. I don't know why, but I tried to order the book on-line and I've had trouble getting anything from the publisher.
I thought, Oh no. I've written the book but I guess it's not going anywhere.
The day I was about to give up hope, a friend named Mr. Akatsuka sent me an email. gI read this book. I do not understand fully what it is all about, but I will help you spread the message to the world.
Mr. Akatsuka is Christian. He believes in Jesus Christ and says Jesus would have been known as just a carpenter if not for Paul. Those aren't my words. That's what Mr. Akatsuka said.
I'll be Mona's Paul and spread her story, he told me. And he bought a hundred books. He gave a copy to one hundred of his friends and he told me he threatened them by saying, Buy ten more copies or I won't be your friend any more! So then more people read the book. In a strange way, I felt Yukie-chan was protecting and watching over me.
I still do not think it an easy task to fulfill Yukie's wish to create a world in which everyone values people with disabilities. But I will keep trying to spread her message, which is why I would like to ask you a favor.
Help me spread the word. Tell people, Hey, I went to this talk today and heard this story. Tell them about how one-fourth of the population can make miracles happen. When you go home or go to work, tell others the stories you've heard today. Talk about Yukie-chan and the message she wanted to pass on. I would be grateful.
I have one more favor to ask. A friend told me, Kakko-chan, it'll take forever to spread the message the way you're doing it. Here's a better way.
I have a homepage on the Internet called Tampopo no Nakamatachih (Dandelion Friends) and I also have a blog called Ichijikurin. Many people read it. My friend said, The people who visit your websites already know you and your work, or are parents of children with disabilities. But those people are already aware of the issues you raise. You won't be spreading the message to a wide audience.
So I have something called a blog ranking on my Ichijikurinh blog. He told me where to put it. It says Ninki blog rankingh (popular blog ranking) towards the bottom of the column. If viewers click on it once a day, the blog ranking gradually goes up. Now other people have become curious enough to visit my homepage, and slowly more people are learning about the children at my school. An owner of a shop said, I've decided to hire people with disabilities.
Another wrote, There's a school for kids with disabilities nearby so I often see the students on the train. I used to avoid people with disabilities and keep a distance from them, but since I discovered Ichijikurinh I want to sit next to them and get to be friends with them.h I was very happy to receive these words.
So I'm sorry to be a nuisance but here is my plea to you. If you have a computer and can spare a moment, could you go to my gIchijikurinh blog and click on the popular blog ranking button once a day? Then the ranking will go up even higher and more people might see my homepage.
Yukie-chan wasn't selfish or self-centered. All people should be able to love themselves as they are. Every person is precious, including those living with disabilities or illnesses. Everyone was born for a purpose. I want to keep letting the world know that.
These days blogging is becoming more widespread, and more people are writing blogs. If you have one, I would be happy if you would like to share anything I've written on my homepage or my gIchijikurinh blog, or that I've included on the Bessatsu Tampopoh page which has audio recordings of my talks. Feel free to use anything you like, without worrying about copyrights or anything. Thank you very much.
1 Recent research suggests that AIDS immunity is linked to resistance to smallpox, rather than the plague.
2 Suno was Yukie's pen name.