She wrote about her personal experiences living with spinocerebellar ataxia which was later published in the book 1 Litre no Namida. At the age of 15, in , Aya was diagnosed with spinocerebellar ataxia. Her friends helped her with climbing the stairs or walking. But it went harder for them and specially Aya, so she went to a school for disabled people. Until the age of 25, Aya's health continually worsened, and she was eventually unable to complete daily tasks ADLs. She eventually became confined to her bed, and was unable to walk or speak.
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Thank you for this! I've been searching for a long time for this diary since I can't buy the book. Can I know where we can buy this book? Is it available anywhere? Pages Home. Introduction to Kito Aya and Her Diary:. I explained the changes to Dr. The School Festival. Thinking that my boarding school life will soon be coming to an end, I poked my nose into the Executive Committee to excess this year.
I also worked hard for the Christmas party, eager to entertain everyone. I was so busy. But I was satisfied with myself this year because I did various activities for the sake of other people. I was ashamed of myself for only thinking of the present.
Spring will soon be over, As I put my hand out of the car window to catch the flower petals fluttering around, I could feel Mom's deep love. That gave me some peace of mind. I'm more scared when I get up in the morning than when I go to sleep on my own. It takes me about an hour to fold up my futon and put on my uniform, another half an hour to go to the toilet, and then 40 minutes to eat breakfast.
When my body isn't moving smoothly, it takes even longer. I don't even have time to look up at someone's face and say, 'Good morning. This morning, I fell over again and got a nasty bang on my chin. I checked to see if it was bleeding. It wasn't, so I felt relieved. But I know that in several days I'l start feeling some pain, with bruises on my shoulders and arms. I lost my center of balance in the bathtub and sank down bubbling into the water.
Strangely, I didn't feel I might die. However, I saw a transparent world. I guess Heaven is like that. I put my hand on my chest. I can feel my heart beating.
My heart is working. I'm pleased. I'm still alive! The gums above my right front teeth are swollen. The nerves have died agian. I went with the disabled group on an overnight trip. Many volunteers came along to look after us. Like a three-year-old infant in the rebellious phase, I had to keep saying, "I can do this by myselfm so I'll do it! Etsuyo eats her food lying down. A girl who was passying by looked at her with a funny expression on her face.
I'm glad I can eat sitting up. I began to think that we disabled people are all the same really, although our disabilities take different forms.
Rika, my four-year-old sister, was with us. She said a cruel thing:. I spouted out my tea involuntarily when I heard that.
Young children are cruel because they say things in a straightforward way without considering whether someone may be hurt by what they say. But it seems I can go after all. Mom will come with me and Dad will look after the house. Here's the conversation I had with four-year-old Rika: "Aya, I want to be wobbly like you. This happened in the entrance hall. Mom was some-where in the house. I wonder what she thought when she overheard us? Mom was busily moving around saying how hot it was.
I felt sorry for her because I didn't feel hot at all, so I worked on math calculations until I was sweating. After lunch, I got a toothache.
I took advantage of being at home to cry. That's a favorite remark of his. He put some ice in a plastic bag for me. That cooled my cheek and I slept for two hours feeling comfortable. He beat me, 8 games to 2. Ako comes home late because of her part-time work.
At my request, we had cold tofu and sashimi for dinner. In the evening, I fell down again. As I was standing up to switch off the bedroom light, I fell down. I made a terrible noise and Mom came flying in. Aya, you have to use your brain and build on the things you've learned up to now. If you keep falling down like this, I won't even be able to go out to work with an easy mind.
I must be more careful about what I do late at night. I cleaned my room enthusiastically, thinking "Today's the day! But I worked desperately at it. I felt so good afterwards. Keiko came to visit me. Like Aquatic plants Floating on a pond, Talking with my friend, Just looking at each other, About our innermost feelings.
My friend with her sparkling eyes Tells me about her dreams. 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.
My nystagmus involuntary movement of the eyeballs to left and righ. 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. 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. 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. 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. Ideally, people will get accustomed the way you speak. Using a pair of crutches. I almost fell over because I haven't got much strenght in my right hand.
Though I was told I wouldn't be able to walk unless I could kneel, I felt dizzy and couldn't do it well. The 20th day in hospital. I had the second round of tests on my functions. That's no good!
1 Litre of Tears
I understand the feelings of some of the fans like me unable to read the diary but crazily hoping the English translation would come out one day soon so I thought I wanna translate the diary, Japanese to English, and spread out "Kitou Aya's goodness and strong desireness to survive when she was alive". Sunday, June 21, Saturday, June 20, One Liter Of Tears - series intro. A person with shallow tears will definitely cry with this series. This is about a 15 years old girl that was diagnose with an incurable disease.
"The Complete Diary of Aya - 1 Liter of Tears."
Thank you for this! I've been searching for a long time for this diary since I can't buy the book. Can I know where we can buy this book? Is it available anywhere? Pages Home. Introduction to Kito Aya and Her Diary:.
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