Saturday, 7 May 2011

Japanese Drama - 1 litre of tears

 

Title: 1リットルの涙
Title (romaji): 1 Litre no Namida
Also known as: Ichi Rittoru no Namida / One Litre of Tears / A Diary with Tears
Genre: School, romance, family, human
Broadcast network: Fuji TV
Related TV shows: Tears of Happiness
Episodes: 12 + Special
Viewership ratings: 15.31
Broadcast period: 2005-Oct-11 to 2005-Dec-20
Air time: Tuesday 21:00
Ending theme song: Only Human by K
Insert songs: Konayuki and 3/9 by Remioromen
Drama OST: Ichi Rittoru no Namida OST

15-year-old Ikeuchi Aya was an ordinary girl, the daughter of a family who works at a tofu shop, and a soon-to-be high schooler. However, odd things have been happening to Aya lately. She has been falling down often and walks strange. Her mother, Shioka, takes Aya to see the doctor, and he informs Shioka that Aya has spinocerebellar degeneration - a terrible disease where the cerebellum of the brain gradually deteriorates to the point where the victim cannot walk, speak, write, or eat. A cruel disease, as it does not affect the mind in the least. How will Aya react when told about her disease? And how will Aya live from now on?


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Translators' Note

This book was first published in Japanese in 1986. The translation is based on the revised edition, to which a
postscript by Aya's mother was added. Most of the original diary dates were excluded during editing, so we have added the years for each chapter to give some idea of the passage of time.
To express familiarity or respect, the Japanese often add suffixes to names. Aya used many in her diary. Where it seemed appropriate, we decided to retain them in the translation. For example, Aya refers to most of her girlfriends by adding the suffix '-chan' to the first letter of their given name ('A-chan') or the first Japanese syllable ('Satchan'). In the few places where she uses the full given name, we have removed the suffix ('Emi').With boys, she usually adds the suffix '-kun' ('T-kun').
The common Japanese suffix '-san', which is generally used for adults, is somewhat vague because it can refer to both sexes, rather like 'Dr.' in English. In some cases, it is not clear whether Aya was referring to a man or
a woman (and in a few cases, students), so we decided to retain it. The same is true of the polite suffix
'-sensei', which basically means 'teacher' but is also used for doctors and other people of authority. Aya
generally referred to her school teachers by adding '-sensei' to their surname ('Inamoto-sensei') or to the first
letter of their surname ('I-sensei'). In one case, she used the full given name of a female teacher
('Motoko-sensei'). Aya also used '-sensei' to refer to her doctors, but it seemed more sensible in English to
translate that as 'Dr.' to distinguish them from her teachers.
In the case of her first caregiver, Aya referred to her by name; she affectionately used the term for an elderly
lady, 'Obachan', which literally means 'granny.' We decided to translate this as 'little old lady'. Aya also
used the suffix '-obachan', which is used for middle-aged-woman.
Another cause of translation problems is the Japanese convention of referring to siblings by their age relative
to the speaker rather than by using their name. For example, 'imoto' means 'younger sister' and 'ototo' means
'younger brother,' and you can refer to your elder sister as 'one-san' or 'ne-chan'. This convention is not
used so much in English, especially when talking directly to one of your siblings. In written Japanese, it is
often easier to write the one character for 'imoto', for example, than writing out your sister's name. This is
somewhat confusing in Aya's case because she had two younger sisters and two younger brothers, and it is not always clear which one she was referring to. In a few diary entries she does use her sisters' names, but neither Aya nor her mother ever refer to her two brothers by name. As far as possible, we have determined which brother or sister was being referred to and followed the English convention of using their names.
When Dr. Yamamoto first met the 14-year-old Aya, she called her 'Aya-chan.' To suggest the affection inherent in that form of address, which her doctors and nurses continued to use even when Aya was in her twenties, we decided to translate it as 'Little Aya.'
The text includes expressions in Aya's local Aichi Prefecture dialect, but we have not attempted to duplicate
them in English.

Yoko Toyozaki
Stuart Varnam-Atkin
2007

Message from the Publisher

As Aya's condition worsened, her diary entries became virtually illegible. Shioka Kito, her mother, transcribed
them in order to put this book together. During the editing process, many people cooperated with us and gave us
tremendous encouragement. We are really grateful to them all for their kindness.
Aya passed away quietly while surrounded by her family at 00:55 on May 23rd, 1988. Although she was unable to speak, just before departing this world she strongly uttered the sound 'a,' the first syllable of 'arigato'
(Thank you).
Please send any thoughts you may have after reading this book to our editorial section.
Thank you very much.

FA Publishing Company

Postscript by Shioka Kito (Aya's mother)

25 years and 10 month . . . Aya's short life eventually came to an end.

She suddenly fell into a coma and stopped breathing. Even at that critical moment, her heart continued to beat
desperately, as if it was crying out, "I'm hanging in! I won't give up!"
Although an artificial respirator was being used to keep her alive, her face bore a calm expression, as if she
was sleeping comfortably. I wanted her to open her eyes wide and smile at us. I wanted us to talk together with our eyes, even for just one more time.
"Aya, please look at me! Can you feel Mom's warmth?"
Even though we knew there was no hope, we've managed to overcome so many hardships in the past . . . It seems too cruel to end like this . . . It's so sad! . . . If you're leaving us soon, Aya, you should say goodbye to
us . . . Aya, can you understand what I'm saying?
But she did not respond to our words or our touch.
Your sisters, your brothers and Dad and I are all here. But we can only watch you. There's nothing we can do to
help you . . . If only we could relieve you of even a little of your pain . . . Our bodies are twisted with
sadness . . .

Aya's blood pressure started going down. Her heartbeat got slower as if it's energy was fading away. I was
trying to tell myself that the time was approaching to part from Aya in this world. I was wondering what kind
of state she would want to be in when she ended her life.
We switched on her favorite radio cassette deck beside her pillow.
It was around midnight.
Surrounded by her parents, her sisters and her brothers, listening to classical music with the volume turned
down so that it wouldn't disturb anyone in the other rooms . . .

The ripple mark on the electrocardiogram suddenly became a straight line.

I remembered the words Aya had said before her condition deteriorated:
"It would be so nice to fade away like falling asleep on a beautiful carped of flowers listening to my favorite
music."

 [ Aya passed away at 00:55 an May 23rd, 1988.]


 -'Arigato' (Thank you) -
From Aya's diary

Caregivers

One of the worries that Aya and I had was the problem of finding a caregiver. It would easily be solved if
I stopped working and looked after her. But my husband and I had financial problems: we had to raise our
other children; and we had taken out a mortgage on the new house assuming that we would both be working.
I couldn't afford to give up my job.
There was no alternative but to find a caregiver. Aya is a patient with a very serious illness. She can't
look after her everyday life at all and her speech is difficult to understand. She can only communicate by
pointing at a board of Japanese syllables, and her fingers move very slowly. She has to drag her finger
across the board until she eventually reaches the syllable she wants. It takes a lot of patience to wait for
her to spell out a message. Eating a meal takes her at least two hours. So looking after Aya demands a great
deal of effort.
The first caregiver we found was a 70-year-old woman. She treated Aya tenderly, as if she was her own
granddaughter. Aya could communicate better with her than she could with me. Just by watching the movement of Aya's mouth, she would say, "Yes, yes, I understand." I was the one who had to ask, "What did she just say?" Watching her looking after Aya so efficiently, I was very grateful that we had found such a good person and also for her valuable work.
But we had a hard time after Aya was moved to N. hospital in Toyohashi. I can't remember how many times we had to change caregivers that year. When I ask one who had stayed with her for a longish period, "Aren't
you having a hard time with Aya?", she replied, "If I gave up at this level, I wouldn't be fulfilling my
duties." But another caregiver who kept saying, "I'm having a really hard time; it's so hard and hopeless,"
didn't stay long.
The problem was the timing of a replacement. The Chairman of the Association of Caregivers had told us that
the family must look after the patient until the next caregiver is found. I would suddenly get a call from
the association at my workspace. We were in a disadvantageous position because Aya was difficult to care for and it was certain that some caregivers would soon get tired and give up. But what could we do?
I offered to stay overnight once or twice a month instead to let the caregiver take a rest. That was the
best I could do. I often went to the hospital with some reluctance, wondering if the caregiver would say
that she wanted to leave. When I asked the hospital for their cooperation in asking the association to find
a replacement, they said there was nothing they could do if the association said there was no one available.
All they could do was ring them to ask for a caregiver the first time.
Dr. T. called me and said, "Mrs. Kito, you won't find a good caregiver like that anywhere else, you know.
You should cooperate with her as much as you can so that she will stay for a long time. Aya is a difficult
patient, so no one else would want to come and look after her."
That sounded to me like a kind of threat. How could he say words like that - which would drive a weak person into an awkward position - at the same time as he was saying the hospital had nothing to do with the
association? Not only did the hospital never say, "Let's think about this issue together," it was even
refusing to help us. That suggested he was in no position to meddle in our affairs.
I went to the association several times to explain the situation and ask for their understanding. I don't
know whether it really had a labor shortage or it was just that nobody wanted to help Aya because the rumor
was gong around that she was a difficult case. But I didn't want my child, who had no hope of getting better,
to have to worry about anything apart from her disease.
I started looking for a different hospital. I rang Koseikai Hospital at my last hope and had an interview
with the general manager. I explained in detail Aya's condition, why we wanted to change hospitals, our
family situation, etc. The hospital accepted her immediately. The general manager afficiently arranged a room
for her and contacted the H. Association of Caregivers (different from the previous one). My eyes filled
with tears of relief and gratitude.
A patinet's treatment is always the first consideration, but each patient's background situation is different,
and that can disturb their recovery. It's a matter of course that the patient's family should do their best
to stand on their own feet without totally relying on other people. But those who are involved in providing
medical services have their own position, and they should alo put their energy into supporting the patients
and their families, aiming for each patient's return to society. It's not an exaggeration to say that after
all Aya was able to enter a hospital that had that kind of policy and she could concentrate on receiving
medical treatment.
I also realized that the personality of the caregiver who shares the patient's life around the clock can have
a great effect on the patient.
One day, for the first time, Aya complained about a caregiver: "Mom, this caregiver's threatening me . . .
She keeps saying she'll leave me alone . . . I get hungry during the night because she lets me only eat two
or three mouthfuls of food . . . She says my disease can't be cured, anyway."
It took Aya a long time to tell me these things, desperately moving her stiff fingers over the syllable board.
That caregiver had never showed that kind of attitude to me when I met her at the hospital. But I had been
wondering why Aya's stiffness had suddenly become worse and why she seemed to be losing her energy day by day.
It had reached the point where she had to have nasal feeding (by inserting a tube into the esophagus through
the nose). We knew Aya couldn't hope for longevity. We knew we may lose the fight against the progress of her disease. But that didn't mean Aya had to endure a bed of thorns every day.
I mustered up the courage to say to the nurse, "Aya is not a girl who says anything willful or demands too
much. She's a tenderhearted girl with delicate feelings. She apologizes when she has to wake the caregiver
up during the night. Please understand that for her to complain like this means that the situation must have
gone beyond what she can endure."
Several days later, the caregiver was replaced with a younger woman. Aya was rather tense for two or three
days because she couldn't get used to the new situation, but her stiffness almost disappeared. Eating still
takes a long time, but the new caregiver says to her, "Aya, eating is your job, you know!" Helped to eat by
the caregiver, Aya's cheeks have filled out again. The caregiver also sometimes does her make-up for her,
which provides a lot of satisfaction to her feminine sensibility.
The same caregiver continues to look after Aya today. She provides variety and joy to Aya's daily life by
helping her to sit on the bed and ride in a wheelchair. A lot of laughter can now be heared coming from her
room.
A hospital is really only a temporary kind of home, but it's where Aya now has to live permanently. I think
she regards her caregiver, who shares that life with her, as a substitute mother or a member of the family.
I can see it in her happy smile when the caregiver returns after she has been out on some business for a few
hours.
This life of suffering, in which no flowers are about to bloom and Aya is unable to enjoy as much happiness
as everyone else, will continue. But I pray that even the small pleasures she can experience now will last
at least one more day under the warm protection given her by the doctors, the hospital staff, and her caregiver.
Since the idea of publishing Aya's diary was reported in a newspaper, she has been encouraged by many people.
She has been contacted by her former teachers and visited by Okamoto-sensei. She has had the chance to meet her old friends again. Many days of joy have returned. I can only say how really grateful I am to everyone.

- January 1986 -

Medical Treatment

At the first hospital, patients like Aya with a disease of the cerebellum, which controls the body's motor
functions, were treated in the Neurology Department. In the early stage of her illness, we felt a sense of
security because it was part of Nagoya University Hospital. We commuted a long way feeling relaxed, without ever regarding it as a hassle. But, as Aya's disease progressed, she became unable to move around on her own.
For various reasons, the hospital refuses to allow her to stay.
The more serious a patient's illness gets, the better is it for them to stay and receive treatment at a
hospital with a comprehensive medical system and facilities. But the present medical system doesn't allow
that. Hospitals like that have a policy of providing 24-hour care, so personal caregivers are not permitted
to stay there. But how far is 'nursing' care provided by the hospital? Who is responsible for the part outside
the 'medical' care? There is now other way but for the family to commute every day to compensate for that. If
you can't do that , the patient cannot remain at the hospital and must move to a private hospital. However,
there are not many places available for special diseases like Aya's.
Thanks to an introduction from Dr. Yamamoto, Aya was treated for two years at Akita Hospital in Chiryu City.
This was located a long way from our home, so her contact with the family was greatly reduced. Going to see
her once a week was the best we could do, and we had to rely on a caregiver to look after her on the other
days.
There seemed to be no end in sight for her life in the hospital. We wanted to bring her closer to us, so we
started looking for a suitable hospital in Toyohashi. First we made a telephone inquiries to various
hospitals. When we found one that we felt might accept her, we visited it and explained the details of her
case. We were moved from hospital to hospital. Then she spent around one year at N. hospital in Toyohashi.
I knew there was nothing to worry about as long as they clearly understood Aya's condition. But, to be
honest, as her mother I worried a lot every time she moved to a new hospital. Would she be all right?
If she got phlegm stuch in her throat or her body went stiff, she might suffocate and die. I wondered if they
could provide the appropriate emergency treatment if that happened. Luckily, the woman doctor in charge of
Aya had been taught by Dr. Yamamoto. I felt relived when I heard the two doctors sometimes met each other
at the university hospital.
In june this year, she moved to Koseikai Hospital in Toyohashi for the third time. She is still there today.
At the beginning, she could hardly eat due to the stiffness of her body. It may have been the result of the
tension and fatigue caused by moving from hospital to hospital.
"Next time you become unable to breathe properly," a doctor in the Department of Surgery told her, "we'll
give you a tracheotomy." He also kindly explained to Aya by writing in her notebook. He wrote: "You'll be
all right. Don't worry. If you get better, we'll immediately close it up again." I have been reassured by
the efficient cooperation between the Departments of Internal Medicine and Surgery and help from the
rehabilitation doctors.
I can only visit Aya in the evening on weekdays or on Sundays, so I can't meet with her doctor. But a
nurse always informs me of the day when her doctor will be on duty. I can contact the doctor to discuss any
worries we have and Aya's questions that she has written in her notebook. The doctor makes every effort to
answer our questions. I trust him, I thank him and I respect him. He provides Aya with peace of mind and
Aya smiles. Aya loves taking a bath. Receiving the news that she will soon get the chance to take one gives
her something to look forward to.

Aya's brothers and sisters

Aya's brothers and her sister Ako were junior high school students when it was decided that Aya would move to a school for the physically handicapped.
"There's no hope of Aya recovering from her illness," I told them. "It will only get worse. In a few years,
I think her condition will be such that we won't be able to take our eyes off her. But I will look after her
mostly, so I hope you will plan your futures firmly and take care of your own health."
They listened to me quietly and seriously. Ako, who is just one year younger than Aya, was proud of her hair which reached down to her shoulders. But suddenly she had cut it short a few days later.
"Why did you do that?" I asked her.
"Well," she replied, "I just wanted to change my image."
Observing how her behavior gradually changed after that, I felt that she had decided on her own way of living
or had resolved to do something.
When she shared a room with Aya, they often argued. There seemed to be a sense of rivalry between them over everything. That made me worry. I couldn't understand why they couldn't get along better. But now that Aya has become bedridden after her life in a wheelchair, Ako is acting like her elder sister. She has become her main advisor and gives her a great deal of mental support.
Unlike Aya, she was able to graduate from Higashi High School. Now she is studying at Aichi Prefectural
College of Nursing & Health. She is hoping to work beside Aya in the future.
The elder of Aya's two brothers has grown up as a man who doesn't play any role directly connected with Aya.
But he calls from time to time and says, "Are you all right, Mom? Don't strain yourself."
I say, "Why don't you go and see your sister? That would make her happy."
But he only replies, "Well, I will some time . . . Please tell her I'm doing fine and she should keep at it."
It may be partly because he, too, felt a strong surge of emotion when he see Aya crying the last time he went
to see her.
He has been working as a policeman in Mie Prefecture for almost two years now. He expressed his sympathy for his sister by quietly leaving his postal savings book - in which he had saved money little by little - saying,
"Please use this for Aya."
How will Aya's brothers and sisters get along with their ailing sister when they grow up? Looking back, I
realize that apart from being unable to do enough for Aya, I have rather neglected our other children. I
sometimes hear about families in which people ignore their brothers and sisters. That kind of thing worries
me as I get older.
I have never said that they should plan to help with Aya's care in the future. But it seems that they are
naturally tightening their bonds to look after themselves after I go. That makes me feel very happy.

Afterword by Shioka Kito (Aya's mother)

When we went to Nagoya University Hospital for a consultation, the doctor told us the name of Aya's disease.
He explained to us how her physical abilities would gradually be lost as the disease progressed and that there
was no cure. Like any parent, I prayed that at least my child would turn out to be an exception, that the
progress of the disease would stop where it was, and that some kind of miracle would happen.
My daughter believed absolutely that she would be cured. I was very confused and I found it hard to come to
terms with the situation. As her parents, how should we look after her? I realized that we would have to face
our future firmly, walking together with her and supporting her as a solid pillar.
Some people who acquire a partial disability, such as the loss of an arm or a leg, can use their other healthy
parts to compensate. But in the case of spinocerebellar degeneration, the patients whole body loses its
locomotive power. All the large motor functions, such as sitting and walking, are gradually lost; so, too,
are the fine motor functions, such as writing and using chopsticks. The whole process requires a long battle
against the handicap. And the tactics have to changed according to the patients condition.
Constantly threatened by the progress of her disease and under the pressure of anxiety and fear, Aya refused
to accept the inevitable or to give up. She continued to make an effort. But finally she became bedridden.
Today she can hardly speak and cannot even wipe away her tears. I wonder what ond how she thinks about herself inside her clear brain? But there is no way to understand that now. She has been deprived of the ability even to express her feelings.
In the sixth year of her illness, when she became unable to cope with daily life by herself, she wrote "What
am I living for?" in her notebook (page 162). She asked me the same question. She had tried so hard to keep
going and had fought as hard as she could. But the end result was that her life was moving ever further away
from the life she wanted to live. She seemed to be reproaching herself, saying "My life is worthless," "I have
nothing to live for," and "I'm just a burden."
She never did or said anything to criticize others, such as "Why is it only me who has become like this?" or
"I wish you had never had me." That made it all the more difficult for me to answer her.
The major events in her life - such as the outbreak of her illness, her move from Toyohashi Higashi High School to Aichi Prefectural Okazaki High School for the Physically Changed, her graduation, when she became unable to walk, and finding a caregiver - were always obstructed in some way. That made Aya depressed.
We groped along digging in a pitch-dark tunnel together as we tried to heal her bloody, damaged body. But then
we found we had to face another obstacle. We have come this far, somehow or other, hoping to find a brighter
path where we could say: "Oh, this is what we've been looking for!" But the reality of the terminal station
we have now reached has turned out to be too cruel.
I cried together with Aya when she cried. I joined her in her sadness as I helped her to get up whenever she
fell over. And when she became unable to move and had to crawl along the cold corridor, I followed behind her,
crawling at the same pace.
I couldn't take the commendable attitude of never showing my tears in front of the children. Because I
understood Aya's agony and pain very well, I thought that was only a natural way to show myself as a mother.
But from the position of being a grown-up and a parent, I didn't differentiate her from her healthy brothers
and sisters.
Regarding the words 'It can't be helped because she's ill,' I often insisted she should carry out things
properly except those that were really impossible for a disabled person. The difference from the others was
only that she had an extra burden on her shoulders due to her illness. And I had to share that burden.
Aya said that because of that burden her life had gone off the rails. But I bought her various books about
other people's battles against disease. I made her read them, telling her that this was her life, too. I
didn't want her to become narrow-minded, thinking that she was the only unhappy person in the world.
I tried to encourage her by saying, "Aya, you've tried as hard as you could with everything and that really
surprises everyone. I think you've been leading a much more decent life than your mother, who has been living
very nonchalantly without any physical defects. That's why you have friends who still visit you and say
there are a lot of things they can learn from you. That's wonderful!"
I decided to make these words to reply to her question, "What am I living for?" I started to organize her
notebooks which spell out the way she has lived through her life of bitter struggle. Hoping to
produce a book that would provide Aya with some comfort and give her something to live for, I consulted
Dr. Hiroko Yamamoto, Assistant Professor of Fujita Health University. She kindly agreed to cooperate.
Aya herself says, "I haven't lead a decent life that I can tell other people about. I'm embarrassed because
I always cry. It's been a life full of regrets, constantly telling myself I should have done lots of things."

"Can I . . . get married?"

The examination and treatment of patients is not the only role of a university hospital. It also has to
carry out research and educate medical students, teaching them how to become good doctors. After studying
about diseases in a general way, the students are divided into small groups of six or seven. They make a
round of visits to a different department every one or two weeks to examine the patients. They read the
relevant textbooks and receive guidance from the doctor in charge of the patients. This is the curriculum
called 'porikuri' (polyclinic). Two groups often have to remain in the hospital at night, and sometimes
even sleep over in the special 'porikuri' rooms: the students of the surgery-oriented departments, who
have to observe operations, and those of the obstetrics department, who also have to attend the birth of
babies.
I feel sorry for the patients who cooperate in this curriculum, but I always ask them because I think it
is an important way to foster good doctors. The patients all kindly agree. When the visits are repeated,
patients get used to them. They even acquire better knowledge by glancing at the textbooks carried by the
students and listening to what the doctor explains to them. Reversing roles, the patients sometimes even
teach things to the students in the next group that comes around - which is no laughing matter.
Aya was in the same age group as the students. I was a little concerned about her state of mind, but I
wanted the students to get some understanding of her disease. I made up my mind to ask for her cooperation.
She nodded with a wet little smile.
Three students, two young men and a young woman, were responsible for Aya. They carefully examined her
and studied hard about her disease. Though their visits finished after one week, one of the men sometimes
went to see Aya in the evening while he was studying in a different department. He was blessed with good
health and came from the kind of family in which it was only natural to study medicine. I could imagine
he was shocked to learn about Aya's circumstances: entering a high school aiming at university study, and
then having to move to a school for the handicapped because of her disease. And he knew that the disease
was 'slow but progressive.' I was pleased to hear that he found time to visit Aya not just because of his
interest in the disease but because of his kindness. It suggested to me he would make a good doctor.
One day, I was walking along the corridor after finishing my round of ward visits. Aya suddenly came out
of her ward in her wheelchair, just as if she had been waiting for me. She stopped beside a fire hydrant
on the dimly-lit wall and asked me a question out of the blue:
"Dr. Yamamoto, can I . . . get married?"
I automatically answered, "No, Little Aya, you can't."
Then I thought for a moment. Why had she asked that question? Maybe there was someone she liked . . .
could it be that medical student who had been visiting her? Thinking I should listen to her carefully,
I crouched down and looked into her face as she sat there in her wheelchair. I was shocked to see the
look of surprise in her eyes. She had clearly been startled by my firm reply.
Aya was in a state where she had to struggle even over small things, and she knew that her disease was
gradually getting worse. I had assumed that she would never even think about marriage in general, let
alone think about whether she could get married or not.
Now I realized, however, that reality was different: she had become taller, her breasts had developed,
and she was having her period regularly. It always bothered her because it made her sway more. I'd
watched Aya grow from a young girl into a woman. So why did I assume that she would never think about
getting married and having a family? I felt ashamed of myself. I had decided on that dogmatically. Even
though we had been deeply associated with each other for so long, I hadn't fully understood her.
That made me reflect on my conduct. It was the biggest shock that I had ever had from one of my patients.
I will never forget Aya's large, shivering eyes and surprised expression at that moment.
I suppose my answer had caught her off her guard.
"Why can't I?" she asked. "Is it because my children would have the same disease?"
"Well, you need someone to get married to," I answered as cheerfully as possible. "First of all, you'll
have to find someone who fully understands your condition and will agree to marry you. Do you have anyone
in mind?"
It was a very cruel answer. But I didn't want to give her a vague reply that would encourage her to
cherish an illusion that would soon be dashes.
I was moved to tears as she shook her head and said, "No."
I don't know which came first - her face becoming hazy because of my tears or her eyes filling with tears.
For a while, I couldn't move.
For several days after this incident, I could still hear her voice asking, "Dr. Yamamoto, can I . . . get
married?"
The student who had visited her from time to time gradually stopped going to see her. I suppose he got
too busy. Perhaps partly because of that, Aya committed herself to rehabilitation as if nothing in
particular had happened. And she seemed cheerful in her ward.
Around the end of her stay in the hospital, Aya began to suffer from orthostatic hypotension. She would
get a headache and feel nausea whenever she got up. Then one of the patients in the same room died
suddenly. That made Aya's anxiety about dying stronger. She spent several days looking very depressed.
Again I explained to her what would happen to her as the disease progressed, but I said it was a long
time before she would have to face death herself. She nodded. Little by little, she became cheerful
again.
However, she started needing other people to look after her. She moved to a hospital that permitted a
caregiver to stay with her. I sometimes go there to see patients in my special field. Later she moved
to a hospital closer to her home in Toyohashi.
Although I haven't seen her mother for more than two years, she keeps me updated on Aya's condition. She
consults me and a young doctor from my university who has been sent to the hospital where Aya is staying
now. So I have a good grasp of how she is doing. I hear she is loved by everyone wherever she goes, and
her caregiver looks after her with warmth and compassion.
Whenever my patients with this disease start getting discouraged, I encourage them by talking about Aya.
Recently, I've been thinking that in fact I am the one who has been encouraged by her most of all.

Hiroko Yamamoto
Assistant Professor,
(Now Professor)
Department of Neurology,
Fujita Health University Hospital

Chapter 9 - "Can I . . . get married?" II

Hospital life at Nagoya Health University Hospital

In April, 1980, I finished my doctoral thesis at Nagoya University. I moved to take up a new post at Nagoya
Health University Hospital - now called Fujita Health University Hospital - in Toyoake, Aichi Prefecture.
By then Aya required the use of an electric wheelchair, and she could only travel to the hospital by car.
Because Toyoake was closer to her home than Nagoya, she moved to the same hospital where I was now posted.
As I examined Aya in the consulting room at the new hospital, I compared her condition to the day when I
had first met her in Nagoya. Her cheeks had been much fuller then, and I had been able to understand
what she said much better. Even though she had claimed she was swaying, she was walking quite
normally to other person's eyes . . . After just five years, however, she needed someone to push her around
in a wheelchair, she couldn't utter words quickly even though she tried hard, she could only speak by twisting
and stretching her thin neck, and her way of speaking was hard to understand for someone not accustomed to
it . . . I was shocked by her deterioration.
After leaving the school for the handicapped, Aya stayed at home while the other members of her family were
out at work or school. She had lunch on her own and looked after herself. Her mother was worried about
possible accidents while the others were out; Aya often fell over inside the house even if she was holding
on to something. In fact, every time she came to the Outpatients' Department, she had injuries from falls
which had caused internal bleeding on her face, arms and legs. There were more of them than before and they
were becoming more serious.
She entered the internal medicine ward on the eighths floor of Building #2 of the hospital in order to have
treatment and rehabilitation for the second time. She was the first spinocerebellar degeneration patient
in that ward.
There were seven or eight other patients there that I was in charge of, plus some others, all with heart
or blood disorders. Many of the nurses were young and some of them were younger than Aya. I had gotten
into the habit of calling her 'Little Aya'. It sounded funny to hear the nurses who were younger than her
calling her 'Little Aya' as well. But it shows the affection everyone had for her.
Aya operated her wheelchair herself. She washed her face using her disabled hands, went to the toilet, and
cleaned the table for meals. She went for rehabilitation without fail, and read books sitting on a chair
or on her bed during the daytime. She got interested in handicrafts and the origami that the other patients
in her ward were teaching each other. But she was distressed at not being able to do as she wanted. The
head nurse was touched when she quietly watched her at those times.
More than anyone else in the same part of the hospital, it was the older patients who were moved by Aya.
They were paralyzed on one side because they had had strokes - their blood vessels had suddenly become
restricted or broken. They couldn't move their hands and legs as they wished. They got very annoyed and
sometimes skipped rehabilitation sessions. Some of them had almost lost their desire not only for
exercising but for life itself. However, when they saw the serious efforts made by Aya, who could have
been their granddaughter, they were encouraged to do their own training again. They started bending and
stretching their arms and legs on their beds.
Both their families and the nurses were pleased. As their doctor, I couldn't ask for more. I had explained
the benefits of rehabilitation over and over every time I made a round of visits. I had tried to say
various things to motivate them. But I realized that what I said had less effect than the way Aya looked
as she pushed herself as hard as she could in her wheelchair.

Chapter 9 - "Can I . . . get married?"

Little Aya's admission to the hospital

Aya stayed in Ward 4A at Nagoya University Hospital. She was very popular with the nurses. Although she was a high school student, her childlike face gave her an angelic look. She obediently followed everyone's
instructions, hoping to get better, even if only a little. She planned and practiced various exercises for
her hands and legs. It was impossible not to be fond of her. The new remedy had a slight effect, but it
didn't reduce her daily inconveniences. The nurses complained to me, saying "Dr. Yamamoto, Little Aya is
working so hard. Why can't you do something to help her?" I felt a loss.
Around that time, word was going around that the professor at the hospital was an authority on spinocerebellar degeneration. Many patients came to our hospital from all over the country. Aya and U-kun, a boy one year younger than her, were young and cheerful patients. But some of the patients were bedridden, only getting up to go to the toilet in a wheelchair. Sharp-eyed Aya mentioned the names of the seriously ill patients to me and asked, "Will I be like them soon?"
I knew Aya had various dreams for her future. During my rounds, she would carefully check my reactions as
she told me about them. I had begun feeling that it was about time to tell her properly about her disease.
So I answered, "It will be a long time from now, Little Aya, but yes, you'll be like that eventually."
I explained to her in detail what would happen to her as time passed: her swaying would gradually increase;
eventually, it would be difficult to walk; her speak would become unclear and would not be understood;
and writing and using her hands for any kind of handiwork would become difficult.
For several days after that, she was very depressed. But soon she started asking me positive questions
again: "Dr. Yamamoto how much longer will I be able to walk?" or "Do you think I could manage this kind
of work?" I felt sorry for her, but I thought it was good that I had explained everything.
In fact, after that, our mental bond became stronger. We could talk openly about the very serious symptoms
of the disease, and knowing in advance what would come next made it easier to decide what to do next.
Her stay at the hospital that time couldn't do much to improve her condition. However, I believe she left
the hospital understanding what was most important for the long life under medical treatment that she would
have to face.



Changing to a school for the handicapped

Aya's high school requested that she leave the school because she was causing trouble for the whole class.
It was just what we had feared would happen. Bitterly disappointed, Aya's mother told me that her classmates were helping her go up and down the stairs when she moved to another classroom and saying. "It's no trouble, Aya!" We'll help you in the same way in the future."
I felt brighter when I heard that her classmates were supporting her.
Her mother told me that she was going to ask the school to let her daughter stay.
"If the teachers have any questions about Little Aya's disease," I said to her, "I'll be happy to explain.
Or I could go with you to the school."
But her mother replied that she would prefer to go by herself. She went to the school many times, despite
her busy work schedule, and made a strong appeal to the school authorities for Aya to stay there. In the
end, however, it was decided that Aya would move to a school for the handicapped. The grounds of that school are designed so that the students can freely move around in wheelchairs. It also has a rehabilitation
facility where they can study while having treatment. But I think it was a big shock for Aya's mother who,
supported by many of Aya's classmates, had been fighting against the move. When she told me in a sad voice
that Aya was going to move, I felt a lump in my throat.
I suppose that the high school administrators did not know how to deal with Aya. Their conclusion was that
if there was a school designed for children like her, why shouldn't Aya go there? But I wonder if causing
trouble was the only effect Aya had on the school. From what I heard, the desire to care for a disabled
friend was emerging very naturally among her classmates. They could learn a lot from the serious attitude
of a friend who was trying so hard to live. I was very disappointed with those evolved in her education.
They didn't even inquire about er disease. They just did things by the book. Today, the issue of bullying
is talked about a great deal, but I believe there was no hint of a dark shadow over Aya's classmates.
Much later, when Aya entered the hospital again, I remember her saying to me happily, "Please give me
permission to go out because I'm going to meet my high school friends."

"Can I . . . get married?" by Hiroko Yamamoto

Introduction

I had a call from Aya's mother one Wednesday afternoon in late September. It was around the time of day when the outpatients waiting to be examined and those who were undergoing an examination were all beginning to get a little tired of having to spend such a long time in the hospital. She told me she was preparing to publish Aya's diary,which had been written over a long period. She wanted to ask me, as her doctor, about the disease Aya had suffered from and also about my association with her.
While advising Aya to keep her notes in a diary and organize them into a book, I was concerned about the fact that there wasn't much I could do to help her. So I was relieved and very pleased to hear that publication was getting under way. Aya is no longer able to get up by herself and is now bedridden. She has to rely on someone to help her eat and do everything for her.
Her mother said she wanted to complete the book as quickly as possible for the sake of such a daughter. I felt a lump in my throat when I heard her mother's way of talking. I granted her request. At the same time, I thought that looking back would be a good chance for me to put everything together; my encounter with Aya was also deeply connected with my own growth as a doctor.
You may find what I have to say about Aya's incurable disease - spinocerebellar degeneration - a little difficult
to follow. But I hope you will read it carefully because it is important to understand her way of live.


What is spinocerebellar degeneration?

A human brain has about 14 billion nerve cells, supported by more then ten times that number of cells. The nerve cells are classified into many groups. Some function when you are exercising and others work when you are observing, hearing, or feeling something. As long as a person is alive, many groups of nerve cells are working.
The nerve cells inside the cerebellum in the brain, the brain stem, and the spinal cord are required for the body
to maintain balance reflexively, and to achieve quich and smooth movements. Spinocerebellar degeneration is a disease in wich those nerve cells gradually change and then finally disappear. We haven't yet discovered why they behave like that. According to nationwide statistics there are just over 1000 patients suffering from the disease in Japan. However, it is said that the real number of patients is two or three times that figure.
The most frequent symptom of the disease at the early stage is when you feel your body is swaying. At first you may think it's because you are tired or have anemia. But it gradually develops to the stage where you can't walk straight. People may start asking if you're drunk. Other early symptoms can include: dimmed vision, double vision, or things appearing to shake; difficulty in speaking because you can't get your tongue around certain sounds; difficulty urinating and the sensation of residual urine even after you've been to the toilet; feeling faint when you stand up because your blood pressure suddenly drops; etc.


How the disease progresses

The swaying increases, and you need some kind of support when you are walking. If it gets much worse, you
cannot stand by yourself with your legs together. Pronunciation gradually becomes unclear and your speaking rhythm deteriorates, so people cannot understand what you are saying. The movements of your hands and fingers can't be controlled as you wish. That means you have difficulty writing and nobody can read what you write. You can't use chopsticks when eating, and you can't carry food properly to your mouth, even with a spoon. And even if someone helps you to eat, it takes time to swallow, and you may sometimes choke and spray grains of boiled rice everywhere.

This symptoms progress little by little until you finally become bedridden. Then there are various dangers:
bedsores can get infected; you may develop pneumonia because food gets into the trachea due to the failure of swallowing; urine is left in the bladder, and an increase of bacilli leads to cystitis or pyelitis.
As a result of all or some of these symptoms a patient usually dies in five to ten years.


Is there no remedy?

Today there is no remedy available. The cause of the disease is still unknown, so we are groping in the dark
regarding proper treatment. There is a medicine that can temporarily prevent the disease from advancing or slightly slow down the speed of its advance. It has been drawing a lot of attention, but it hasn't been used for very long and we need to take a long-term view of its efficacy.
But thanks to the remarkable advances in genetic engineering in recent years, it is surely only a question of
time before it will be possible to determine the chromosome in which there is a gene that causes the disease -
if the disease is hereditary. Then it may be possible to replace that gene with a healthy gene. I sincerely hope
that the sad voices of the spinocerebellar degeneration patients and thair families will be fully added to the
debate over the rights and wrongs of gene manipulation.
But that is for the future. The most effective guidance for the time being is for patients to continue exercising
and training. They must try to maintain the strength of the muscles in their whole body, and look after themselves as well as they can.


How do you explain about the disease to patients?

It is not difficult for medical specialists to diagnose the disease. However, they tend to agonize over how they
should explain it to the patients and their families. Some doctors prefer not to tell the patients that there is
no chance of them getting better. Instead, they encourage their patients with words like, "Don't worry, you will
be cured." However, they know that the patient's condition will gradually get worse, and it's impossible for them to recover. They may explain this to the patient's family to a certain degree. Other doctors give up in despair and all they do is tell the patients and thair families that it's a very serious disease for which there is no cure.
What I say to patients is this: "It is very difficult to cure this disease. There is also the possibility it will
slowly get worse. However, today various types of remedy are being developed." Then I explain in detail how many more years the patient will probably be able to walk, and how long they will be able to sit and move their hands and legs.
Patients and their families tend to be temporarily shocked by the news. But they soon recover their normal spirit and start planning their new life and how to spend their social life while coping with the disease. Some patients, however, visit various hospitals hoping to get more reassuring words about a cure. They never come back to me as outpatients. That discourages me, because I start worrying I couldn't make myself understood properly. I have to conclude that to begin with we didn't have a good rapport.
I guess those patients and their families who stay with me have thoughts similar to mine as their doctor. Little
Aya Kito (referring to a grown woman like this may sound strange, but to me she is still 'Little Aya') and her
mother were among them.


First meeting with Little Aya


I had just returned from a three-year stay in the United States. I was working in the 4th Study Room of the 1st Department of Internal Medicine at Nagoya University Hospital (now the Department of Neurology) with Professor Itsuro Sofue. I was helping to analyze nationwide data on sinocerebellar degeneration. I also wrote the professor's findings about the outpatients in their case records.
One Monday, a junior high school girl with a short bob was brought to the examination room by her mother. In recent years, the number of specialists who examine nervous diseases in pediatric departments has increased.
So it was unusual for a child to come for a consultation at the Department of Neurology. I learned later that
Aya's mother was a nurse working for a health center in Toyohashi. She had discovered that the professor was the leader of 'the research team on sinocerebellar degeneration, a disease specified by the Ministry of Health and Welfare.' That explained why Aya had bothered to come all the way to our Department of Internal Medicine as an outpatient. It had been her mother's decision.
On the medical chart of the girl who sat in the middle of that bright consulting room in the early afternoon
was written 'Aya Kito, 14 years old.' Her small round face with eyes wide open gave the impression that she
was a bright girl. Her eyes looked worried as she glanced in turns at the professor and her mother as they talked.
After the first examination, the professor diagnosed spinocerebellar degeneration. He explained to Aya's mother about the disease. He gave instructions on how to get a CT scan for Aya to check the inside of her brain, a center of gravity oscillation test, and an eyball motion test. Those tests would provide a better analysis of the symptoms. He asked Aya to come back as an outpatient about once a month to check her condition.
I was impressed with the positive attitude of both Aya and her mother despite the great anxiety pressing down
on them. I felt a strong affinity with them. Soon I came to have my own outpatients in a different consulting
room, so I no longer had the chance of seeing Aya being examined. But we often went to the hospital on the same day and met each other in the corridor.
Aya's mother grasped the progress of the disease very well. She sometimes told me in a sad voice that Aya's
swaying was increasing and she had stumbled, or that her writing had become more disordered. Sometimes she also reported happily that Aya was doing well at school, was getting good grades, and had had an internal school report praising her good attitude, so she could enter a public high school. She also told me Aya had passed the 3rd level of the Practical English Proficiency Test. I kind of championed Aya who was doing her best to fight against her disease. "The third level of the Practical English Proficiency Test is quite difficult, you know," I said proudly to my colleagues, as if she was my own daughter."
One day, around the time when the cherry blossoms in Tsurumai Park were budding and the light pink petals were started to emerge, Aya's smiling face appeared round the corner of the curtain of my consulting room.
"Dr. Yamamoto," she said, "I passed the entrance exam!"
As I replied "Congratulations and good luck!", I couldn't help wishing that her disease would at least not
develop too far before her high school graduation. That also encouraged me to press on with my research on a possible remedy that was being developed.
The high school that Aya entered was located in Toyohashi in Aichi Prefecture. It was oriented toward
preparation for university entrance examinations. Her lively high school life began. But soon Aya's balance
worsened. She could no longer commute to school an a crowded bus every morning. Even though her mother was busy as a nurse, she took Aya to school by car every day. Aya sometimes fell over in her school days and came to the Outpatients' Department with cuts on her knees or a lump on her forehead. Her mother's face darkened momentarily as she told me that Aya's scores at school seemed to be getting worse little by little.
But immediately after that she smiled cheerfully and said, "But because her writing is so slow during tests,
she runs out of time. So it can't be helped, can it?"
In fact, Aya couldn't take notes properly. She also had to change classrooms for different lessons, and was
always late for classes because her movements were so slow. Her high school apparently regarded that as
a big problem. However, her classmates helped her a lot, carrying her textbooks or holding her hand when
they saw her desperately trying to walk. I can imagine how grateful she was, but also how frustrated she
must have felt about her disabled body. However, she was always smiling and her big eyes were active in her
face as it gradually went thinner and smaller.
It was decided she should enter the hospital during her summer holiday in order to try out the new medicine.

Chapter 8 : 21 Years Old [ "For as long as she is alive" by Shioka Kito (Aya's Mother) ]

by Shioka Kito (Aya's Mother)
"Mrs. Kito, please come over here quickly!"
I received the call from the hospital at my workspace. In a panic I rushed to the hospital as fast as I could;
I can hardly remember how I did it.
I pushed my way through the doctor and the crowd of nurses who were gathered around Aya's bed . . .
"What's the matter?" I cried out.
Aya was breathing as if she had hiccups, but she smiled when she saw me.
I hugged her at once, thinking, "Thank God, she's alive!"
The doctor told me that a patient in the same room had noticed that Aya was in agony because she couldn't get rid
of some phlegm stuck in her throat. The patient told a nurse. They administered emergency treatment and her life was saved.


'I wonder how I can show my gratitude?'
From Aya's diary

Due to a variety of minor things, such as developing a fever and faulty swallowing. Aya's condition has gradually
deteriorated. It's just as if she's going down stairs one at a time.
Starting around that time, her writing became very distorted and almost illegible. However, her spirit of wanting
to write in order to live didn't decline at all; she continued writing in her sketchbook holding a felt-tip pen
with all the strength she could muster in a hand which wouldn't move as she wished.
Today, she can't even do that. However, I am sure that she is still writing in her heart, while desperately
fighting against the demon of ill-health.

Chapter 7 : 20 Years Old [ "I don't want to be beaten . . ." V ]

A - RI - GA - TO

I can't lead my live without my little old lady or without depending on someone - for everything, including
turning over in bed, dealing with my bowel functions, putting on my clothes, taking off my clothes, eating,
sitting up . . . Mom has to work and look after my brothers and sisters. She's not just a mother to me. My
little old lady is spending her life only for me. She cooks noodles and 'mochi' rice-cakes (my favorites) for me.
She encourages me to eat more - even if just a little - and get better as soon as possible so that I can go
home. Her daughter-in-law sometimes brings in dishes she has cooked herself and serves me. Her grandchildren
come and take my photo. Her whole family really looks after me.
I can hardly talk. All I can say is "A-RI-GA-TO" (Thank you). But I want to convey my happy feelings to them
using lots more words.

Each person has unspeakable distress.
When I remember the past,
Annoyingly, I cry;
The reality of today
Is too cruel, too severe,
And doesn't even offer me a dream;
Imagining the future
Brings me yet another kind of tears.

Chapter 7 : 20 Years Old [ "I don't want to be beaten . . ." IV ]

Striving to live for the present

In another ten years . . . I'm to scared to think about that.

I have no choice but to live today as earnestly as I can.
Living is all I can do now.
I'm young but I can't move . . .
Dilemma and impatience.
But I'm a patient, so I have to focus on recuperation.

You, one person,
Advise me not to write too much.
Appreciating that,
I put my hands together in thanks.
Thinking on my sickbed . . .
(At this point Aya's handwriting becomes illegible.)

I understand that menstruation - the indication that you're a real woman - stopped if you grew weak from
illness. I also thought that it was a sign of recovery if it started again after six months.

Glancing up from my sickroom,
I saw the blue sky;
It gave me a ray of hope.

Chapter 7 : 20 Years Old [ "I don't want to be beaten . . ." III ]

Hospital admission and a caregiver

I've finally entered Akita Hospital. I was feeling nervous because I'm not familiar with it.

A little old lady came to look after me.
"I'm Aya," I said in a small voice. "Nice to meet you."
Mom explained to her in detail about my condition, what I could't do, and so on. But it's really difficult
to get her to fully understand.
My speech disorder's getting worse, so I asked Mom to buy a magic blackboard. I probably say some words that
other people can't understand.
The movement of my tongue's bad, so the food overflows my mouth. My way of eating looks filthy. It's a
pitiful sight.


'What am I living for?'
From Aya's diary

I feel miserable for being unable to communicate well.

I'm the one who should take the most sensible attitude. But I don't feel very confident . . .

Mom, what am I living for?

I felt dizzy. I had a tearful face. But I closed my eyes and stayed still.

There's a pigeon's nest on the branch of the tree outside the window. A chick is growing up in it. I'm
happy about that.

My little old lady helped me get into my wheelchair and took me to Building #1. Then what? I used the
Western-style toilet to relieve myself.

During rehabilitation, I tend to close my eyes when I stand holding the bar. I can't easily open them again.
I know I shouldn't be scared, but my body gets stiff because I feel I might fall over.

I should properly grasp the things I can do now and put them into practice. Then I won't have to suffer so
much mental agony that I can't get to sleep at night . . .
I can't convey my desires quickly, so I sometimes can't get to the toilet in time. Mom suggested that I should
use a urinary drainage bag during the night. The reason for that is that the caregiver gets tired if her sleep
is disturbed.
I started crying, saying, "I don't like that idea because I know when I want to urinate. I'll try to tell you
in plenty of time, so please don't do that."
"All right, all right," said the little old lady gently. "Don't cry. You won't have to have one."
That made me cry even more.
In the morning , I met the Hospital Director in the corridor.
"Good morning, Little Aya. How are you doing?"
I smiled and tried to say "O-HA-YO" (Good morning) with pouted lips. By the time I got it out, he was already
a long way down the corridor. He must be very busy.

My tearful face is taking root - that's no good.
At night, my arms and legs got tense and stiff. The little old lady got up and gave me a massage.

Because I couldn't easily express myself, I lost my temper and cried. I'm the one who should be blamed for not
being able to communicate well. There was no reason for me to get angry with the little old lady. I'm sorry.

It's nice weather today. I want to stand up. I want to talk.

My little old lady praised me, saying, "Your handwriting's a bit better. You're eating a little quicker now, too,
and you're not dropping your food."
I feel there's something to live for if I improve even a little, and I get more relaxed. I must live considering
how other people feel. I made a promise to Dr. Yamamoto that I'll try to be able to ride in my wheelchair by
myself by the next time I see her.

I saw the blue sky. It's been a long time. It was so transparent, I felt I could be sucked up into it.

My pronunciation of the 'na' and 'da' columns is not very clear. It's also hard for me to say the 'ka', 'sa',
'ta' and 'ha' columns. I wonder how many words there are left that I can actually say? I'll have to overcome this
somehow or other.
Gather up your fighting spirit or the disease will defeat you!

My little old lady bought me an 'okonomiyaki' savory pancake for lunch. We had half each. I also had some
'o-shiruko' adzuki bean porridge with rice-flour dumplings.

I was running a fever and had no energy to talk. I felt very heavy. I lay in bed all day. My little old lady
looked into my face with a worried expression on her face.
Aunt Kasumi took me to the coffee shop inside the hospital. She helped me drink lemon soda with a spoon, one
spoonful at a time. I had given up on the coffee shop, thinking I'd never be able to go there as long as I
lived, so that made me so happy.

My little old lady's hands are rough and cracked now. They look so painful. It's because she has to keep on
washing my nappies due to my failures during the night. I'm sorry.

The Chunichi Dragons won the baseball league pennant! For some reason, we had a bonus of sweet red bean rice
and a cup-steamed egg custard for dinner. I wonder if the Hospital Director or the head chef is a Chunichi fan?

I wanted to stand up, but when I tried, I swayed like a swing and almost fell over. I was scared. My little
old lady helped me.
In the morning, I nearly choked. I was scared again. Unless I take care eating things - however tasty they
may be - it could prove fatal.

When my little old lady took me to the toilet, we saw a vase full to overflowing with beautiful cosmos flowers.
We winked at each other and stole one bud. We put it in the vase in our room.

"Little Aya, you're depending on your caregiver too much," Dr Yamamoto scolded me. "You must find what you can do
by yourself and do it."
I was happily thinking I was OK If I simply stayed out of bed for a long time, but I was wrong. Starting today,
I'll practice fastening my buttons.

I could walk! Leaning on my little old lady, I asked her to take me to the park. I wanted to play with some
dirt; I felt like putting the soles of my feet on the soil. I asked her to put my feet down softly on the
ground from the footrest of the wheelchair. The soil was so comfortably cool!

I desperately practiced fastening my buttons and rolling over and standing on my knees for rehabilitation. My
little old lady was impressed with what I was doing and helped me. She also bought me a pair of sweatpants and
a jacket. I must keep at it more . . .

I want to go home over the New Year. I wonder if I can make myself understood? I'm worried about how I can
communicate with everyone if they can't understand what I'm saying. But I still want to go home.
The bud of the cosmos has opened.

My little old lady cried while she was watching me training. "You did a good job!" she said.
"Why don't you watch Aya once?" she said to Mom one day. "She's working very hard, you know."
But Mom replied, "It hurts me too much to watch her." Then she said to me, "Aya, you've done very well. We
want you to come home for the New Year."
I moved my bowels carelessly.
"I'm so sorry," I said to my little old lady.
"Oh, helping you is my duty," she replied. "It can't be helped."
Still, I didn't know how to feel.

I had some ham for lunch. I hadn't tasted ham for a long time. It reminded me of the past.
I wonder how i can show my gratitude to my little old lady? I can't buy her anything because I don't have
any money. It will be nice if I get better soon and can look after her. Please wait till then!

Chapter 7 : 20 Years Old [ "I don't want to be beaten . . ." II ]

Looking for a hospital

Today, Mom and I went to Nagoya Health University Hospital. I lay on the passenger seat with the back lowered.
I mostly dozed till we arrived at the hospital.
"I'll push them to let you stay here," said Mom, "so don't worry. I know the heat's bothering you, but you'll
just have to be patient till the weather gets cooler. Aya you have a lot of fight left in you. I'm sure you'll
get better."
But I felt that this time I might not last: I have neither the stamina nor the motivation. I don't even have
the strength to think, so I couldn't possibly put up a fight. I don't want to be beaten by my disease, but the
demon of ill-health is too strong.
As I lay on the ward trolley, Mom was negotiating with an outpatient nurse, trying to keep me from overhearing:
"We can't possibly wait in the waiting room as long as we usually have to. She's so weak. Please treat her
as an emergency patient and give her a medical examination quickly. If the other patients are unhappy about it,
I'll gladly explain her condition to each one of them and ask for their approval."
The nurse disappeared inside the consultation area, saying "I'll ask Dr. Yamamoto." Moments later, Dr. Yamamoto
herself appeared. She took hold of my hand and said, "Ah, long time no see, Little Aya. I've been waiting for
you."
Oh, this will keep me going . . .
It would be a pity to die now . . .
If only I could write again, I wouldn't have anything to regret . . .
Saved by Dr. Yamamoto yet again . . .
Tears filled my eyes. Mom was crying, too.
After the consultation, Dr. Yamamoto said she would introduce us to Akita Hospital in Chiryu City where she goes
twice a month for medical examinations.
I felt relieved when she said, "Little Aya, I think you should enter the hospital as soon as things have been
prepared for you. Please wait just a little. I want you to be where I can keep an eye on you."
My upper lip was bent when I fell over, and now it won't meet with my lower lip. I handed the doctor a memo that
I'd written at home:
'It's difficult for me to swallow, so please give me some medicine to relieve the tension in my throat.'
After the examination, Mom drove me home. I vibrated in the car for two hours.
"You have to gain stamina," Mom said. "Tell us anything - anything you want to eat or anything you may be able
to eat. Do you want something now?"
"Yes, I'd like you to bake me a cake," I answered.
"Uh-oh," replied Mom. "Ako's better at baking cakes than I am. Ako, Aya would like you to bake her a cake!"
"Then I'll make you one first thing in the morning," said Ako, all smiles. "Please look forward to that."
I was exhausted and went to bed immediately.

Mom visited Akita Hospital by herself. Before she left, she told me that she'd check what kind of hospital it
was and talk with the doctors in detail. She also told my sister to ask me what I would need, sort out some
things for me, and put them in a box.

Chapter 7 : 20 Years Old [ "I don't want to be beaten . . ." ]

A Fall in The Toilet

Mom brought back some cakes, but I didn't have the energy to eat them. I've been lying down almost all day.
Thinking that was not so good, I tried doing some sit-ups on my futon. I could only manage one.
The summer holiday's starting tomorrow. Mom's telling my brothers and sisters to discuss what they will do
so that they won't all go out at the same time. That's reassuring. I'm sorry to be such a burden. I'll make
an effort to get better, so please forgive me.

When I go to the toilet, either Mom or Ako comes with me. They help me to pull down my pants and sit on the
toilet. Then they wait for me outside. One day, I swayed to one side and fell down with a thud. I don't know
how it was cut, but my finger was bleeding. I lost consciousness.
The next thing I knew, I was in bed. I could see the blurred faces of Mom, my sisters and my brothers. Then
again I fell into sleep. I could vaguely hear Mom's voice somewhere in the distance saying, "You were just
unsteady because your blood pressure was low. Don't worry about it and sleep well."

A stable iron toilet seat weighing more than seven kilos has been installed. The family chose it at the shop
selling special equipment for the disabled in Nagoya. At the same time, they got a bead mat for me (to help
avoid bedsores) and a sheet to prevent the mattress getting dirty.
Also a small desk with short legs (with writing tools, notebooks, letter paper, and so on) was put within my
reach. On top of it there's a bell which produces a loud sound when it's rung.
Now I spend most of the day sleeping. I'm scared of food going down my respiratory tract by mistake because
I can't swallow well, so I can only eat a small amount three times a day. I eat so slowly that lunchtime
comes round just one hour after breakfast.
My whole day is taken up by eating, sleeping and evacuating. What's more, someone has to help me do all
those . . .
I think my life has finally reached the point where it's just one step before it will impossible to stay at
home.
I've decided to stop thinking on and on about my disease.

Chapter 6 : 19 Years Old [ "I May Not Last Much Longer . . ." VIII ]

Limits

People often say that the beginning of the rainy season is a bad time for sick people. And in my case I'm getting
worse and worse as if I'm falling down the stairs.
-I have diarrhea, my body feels dull. Dehydrated?
-My hips are unsteady.
-It's difficult to swallow.
-I fall over and my lips bleed.
-It's difficult to read characters and see other objects. Everything is out of focus.

I was contacted about the festival they're holding at the boarding school, but I don't have any energy at all to go.
My disease has developed too far.
The days when I don't write at all have been increasing.
I can't use a ballpoint pen well . . . I want to think it's because I haven't been writing much.
I may not last much longer . . .

Chapter 6 : 19 Years Old [ "I May Not Last Much Longer . . ." VII ]

"Mom, I Can't Walk Any More."

A baby sits when it;'s around eight months old, crawls when it's ten months old, and walks when it's over one year old. I used to walk, then I gradually went back to crawling, and now I'm sitting most of the tim1! I'm degenerating. And some day, I suppose, I'll be bedridden . . .

Is it only a matter of me being patient? One year ago, I could stand, I could talk and I could laugh. Now, I can't walk, however much I try, however much I grit my teeth and try to hold on with a frown.
'Mom, I can't walk anymore,' I wrote on a piece of paper, restraining my tears. 'I can't stand even if I hold on to something.'
I opened the door slightly and gave it to her. I closed the door again quickly because I didn't want her to see my face, and I knew it would be painful to see Mom's face.

I crawled three meters to the toilet. The corridor was chilly. The soles of my feet are soft like a normal palm of the hand. But my palms and knees are hard like a normal sole of the foot. Crawling's not a nice thing to do, but it can't be helped. It's the only way I can move around . . .

I felt somebody behind me. I stopped and looked back . . . There was Mom crawling behind me, without saying anything . . .Her tears were falling to the floor . . . All my suppressed emotions suddenly burst out and I started crying.

Mom held me tightly and let me cry as I wished. Her knees were soaking wet with my tears, and her tears wet my hair.
"Aya, we're sad, but we'll keep going, OK? I am with you. Now, let's go back to your room before your bottom gets cold. I'm strong enough to carry you on my back. Even if we have an earthquake or a fire, I'll help you first. Don't worry and sleep tight. There's no need to think about unnecessary things."
Then she carried me back to my room in her arms.

I've become a person who can do nothing but weep and whimper. The lump of an inferiority complex is growing inside my brain. I think it's a product of being disabled. But I'm still alive. I'm continuing to breathe in order to live - because I can't die, and nothing can be done about me. That's a dreadful way to say it. When I cry, I get wrinkles on my eyebrows and my face becomes ugly. To improve my face when I look in the mirror, I try to grin even though there's nothing funny.


Let's Live

I want to inhale the blue sky with all my might;
A refreshing cool mint breeze will gently caress my cheeks.
Scattered white clouds reflected in your clear crystal eyes.
I've been dreaming of this wonderful moment . . .

I want to jump up toward the blue sky with all my might;
A robe of cobalt blue feathers will gently envelop me.
Without thinking I am ugly,
Earnestly believing that I may be useful somewhere.

Where do you think I should go?
Always crying by myself,
My notebook is my friend;
Answers it cannot give me,
But my spirit is lifted when I write.

I am asking for a helping hand,
But I can neither reach out nor touch;
My voice only echoes, yelping into darkness.
Evolution from monkey to human took an incredibly long time,
But degeneration is so fast . . .

I dislike being alone during the daytime. Afraid I may no longer be able to talk, I read picture books aloud and do vocal exercises. Today I did deep breathing give times and stretched my neck ten times.

Mom says that I shouldn't try to do too much even when I'm on my own. She thinks it's dangerous. She's always worried until she comes home and sees me. Although those words would make my life when more passive, I can see they're reasonable because in fact I do fall over - my lips get swollen and I break my teeth.

Worried about me being alone, Jun-chan and her mother sometimes come to see me. The middle aged woman from next door also pops in to see what's happening. But my heart's not satisfied. It's very hard to live through each day without any purpose. I can only think about odds and ends in my head, but I can't do anything. How long will this life go on? . . . Mom, I'm in pain. Please help me . . .

Now that it's also dangerous for me to take a bath on my own, either Mom or Ako comes in with me, wearing shorts. Ako washes my hair and my back. I can't raise my right arm any more. It seems my shoulder joints have stiffened up.

Message to Dr. Yamamoto
You said "Vakye what's left rather than what's lost."
The light will shine some day, and the green buds will appear . . .
Have hope, look toward the future, and stand up, keep going don't give up . . .
Those are the passwords!
"Nothing will come back even if you grieve over it,"
said the doctor I trust. "Develop what's left more than what's lost."
I'll try to keep going.
I swear I won't get depressed . . .
It's started to rain.
I envy the changeable nature of the weather . . .
But people can't live being so changeable, can they?

-The contents are irresponsible
-My mind's sloppy
-My writing's shaky
Nothing's any good, you idiot!

So what would you say is left for me?

I had a dream that my family went on a trip to a place that you couldn't go to in a wheelchair.
"Have a nice time," I could say with a smile. "I'll be waiting for you here at home."
I think things like that may become more frequent. I want to be ready for when they become reality.

Chapter 6 : 19 Years Old [ "I May Not Last Much Longer . . ." VI ]


A Traffic Accident

ALL RIGHT, ALL RIGHT . . . Ako was injured and entered hospital. On her way home on her bicycle, she was hit by a car that didn't stop where it was supposed to. She was taken to hospital by ambulance. Will she be all right? I don't know what to do. I can only pray for her . . .

Mom came back from the hospital. Ako has broken two bones in her right leg. She'll have to have an operation once the swelling goes down. Mom said Ako was crying as she did her best to endure the pain, and kept saying, "Mom, I'm sorry about this."

"It was a good thing that she didn't hurt her head. I was really relieved," Mom said quietly. She looked smaller somehow or other.
"Please take me to see her," I said.
"I'll take you when her operation's over and she starts smilingm" Mom replied. "If you start crying, it may make her injury hurt more. So you'll have to wait for a while."

Oh I feel like flying to Ako and saying, "Ako-chan, hang in there!"

My brother dropped by the hospital on his way back from school, but he didn't tell me how she was. Is she that seriously hurt? I really want to eat some sweetened adzuki beans, but I'll be patient until Ako gets better. Hang in there, Ako-chan!

Is Mom all right? She doesn't seem to be sleeping much.
"Mom, I'm anxious about Ako, but I can't do anything," I said.
"Please don't fall over and hurt your self," she replied.
"That's the best thing you can do to help."

It seemed to me a rather passive way to help, but I nodded. Then I said, "Yes, I can see that. I know I won't be able to see Ako until I stop crying. But I'll try hard not to cry, so please take me to see her."

Rika suddenly said, "Ah, I want to die!"
I go serious just hearing the word 'die'. Even when I threatened her by saying "It'll hurt you know," she said,
"That's OK." When I said, in haste, "You won't be able to go on any picnics," she finally said, "I don't like the sound of that. I won't die then."

She wasn't seriously saying that, of course, but I was kind of seriously trying to stop her.

A breeze is blowing-you can feel the arrival of spring. Even the grass shoots are growing rapidly. I can't stretch my left Achilles tendon very well, and it's difficult to sit-maybe because I didn't do much exercise during the cold day. I've also developed a phobia about going to the toilet. I often get stiff shoulders and feel uncomfortable because I don't sweat, even when it's hot. My tongue's movement's poor and I can't even lick a soft ice cream. I guess that's part of the reason I'm having difficulty speaking.

Yamaguchi-san's brother brought a new car. He invited me out for a drive. That was really unexpected!

It was a beautiful spring day. The shepherd's purses, Chinese milk vetch, dandelions, and early clovers were all beautiful. I wanted to make a ring of flowers, but I couldn't do it by myself. I felt embarrassed to ask a man, so I didn't. I found one clover which was sticking out over a ditch. Worried it might fall in, I peered over at it. But it was all right because it had a big root. I felt it must be strong as long as it has that support.

We dropped by Yamaguchi-san's house on the way back. He played his electric guitar. It was a very powerful sound. He said he's deeply into guitar-playing now. He wants to have more equipment, but, he said, "The money comes first, and everything else follows."

In my case, "A sound body comes first, and everything else follows."

That's more difficult than money.

Chapter 6 : 19 Years Old [ "I May Not Last Much Longer . . ." V ]

Class Reunion

Five teachers from the boarding school, as well as 17 students and their parents, gathered at the restaurant called Inaka. I was happy to see everyone looking well. Before the dishes were served, everyone stood on the veranda chatting in the warm sunlight. I was the only one sitting.

Suzuki-sensei came over and sat down cross-legged beside me. Our eye level became the same. He gave me a handkerchief, saying it was a souvenir from Singapore. As usual his eyes were gentle like those of an elephant. Yo-chan gave me a book she'd bought using the wages from her job - Cherry-chan to Einstein boya (Cherry and the Young Einstein) by Teruko Ohashi. We ate to our hearts' content and laughed happily.
"It's been a while since we ate a full-course Japanese meal and saw everyone, isn't it?" Mom said later."We can enjoy a lot of good things if we're alive, can't we?"
"Yes, we can," I answered.

If someone only says one or two words a day, can you say that they are really leading a life as a member of society? . . . I'm becoming that kind of person.
If someone can't do anything by themselves, and has to have other people look after them inorder to live, can you say they are leading a social life? . . . I'm that person.

I want to be useful to other people. --> I will at least try to do my own things so that I won't disturb other people. --> I can't live unless I have someone to look after me. --> I'll become a greater burden on other people . . .

That's the story of my life!

It's snowing. Even with the electric heater on full (oil heaters irritate my throat, so only in my room there's an electric heater) and warming my self in the kotatsu, I feel chilled to the bone.

I started reading Hashi no nai kawa (The River with No Bridge) by Sue Sumii at the New Year. I finished five volumes at a stretch. I easily get totally absorbed. It's a bad habit. I even skipped training to read it. The air was cold when I went out into the corridor. I felt a chill. I put on a short padded jacket in an attempt to avoid getting a cold. But I sensed danger because my body's so stiff. I've decided to eat my meals in my room while it's cold. I feel lonely when someone brings me my food and I eat it all on my own, but sometimes my brothers and sisters come and eat with me.

To tell the truth, I don't like sleeping and eating in the same place.

Chapter 6 : 19 Years Old [ "I May Not Last Much Longer . . ." IV ]

Cruel Words

At last I've been 'referred to.'

Mom and I had gone to the hospital for an examination. I almost fell over int he toilet and Mom was supporting me. I was desperately holding onto her.

Beside me, a woman in her 30s wearing clothes with a red check pattern whispered to her little boy: "Unless you're good, you'll become like her.

Her comment made me feel very sad and miserable.

Mom cheered me up by saying, "Well, if she raises her child by saying things like that, when she grows older and has troubles with her own body, she may realize her teaching was wrong and the fact that she wasn't a good mother has come back to haunt her."

I guess I'll have to face this kind of incident more frequently in the future. When young children encounter someone different from themselves, they get interested and stare. It can't be helped. But it was the first time I've been treated by an adult as raw material for child discipline. That was rough on me.

My family reckoned I must feel lonely being all by myself during the day, so they got me a cat. It's quickly become attached to me. It comes into my futon or inside the kotatsu with me. And it sits on my knees. It's very cute. When Rika holds it, she hugs it tightly;it doesn't like that and tries to escapes from her. Then she pulls its tail and tries to put it on her own knees, no matter how much effort it takes. It refuses more and more. Then Rika gets angry. In the end, she hits it. I tell her off, saying she shouldn't hit it. I tell her off, saying she shouldn't hit it. Rika glares at me and then starts hitting me.

"
Don't you dare!" I say, pretending to be angry with her.
Rika jeers at me, saying, "Aya's angry, Aya's angry!"
"If you say so.:
I told Mom.

I'm 19 years and 5 months old; Rika is 5 years and 7 months old.

I'm living the life of an old woman: no youth, no energy to live, nothing to live for, no goals to work toward . . . All I have is my deteriorating body. Why do I have to be alive? On the contrary, I want to live. The only things I enjoy are eating, reading and writing. I wonder what other 19-years-old enjoy?
When I had my last medical examination, I was told to enter the hospital again after the New Year. I'm scared because I'm only getting worse and there's no sign of recovery. When I think about that, I can't help crying. Thrashing about in the darkness . . . Is that my life? Damn! Showing my defiance, saying "What's wrong with being 19 years old?" or "What's wrong with being 20 y ears old?" won't lead anywhere.

When I cry everyone gets depressed. When I cry, I get stuffed-up nose and a headache and I feel tired. So why do I cry? I have nothing to aim to finish-neither a job nor a hobby. Unable to love anyone or stand on my own . . . I'm wailing.

I look at my tear-filled face int he mirror.
Aya, why do you cry?

I had instant ramen noodles for lunch today - -known for the slogan 'Just add hot water and it's ready in three minutes.' Because I can't sip soup well, I choke easily. It's very painful, you know. If I choked and couldn't breathe when nobody was with me, it could be fatal.

Chika-chan, my senior at boarding school, had polio. She drooled a lot, but she could drink tea from a teacup. Ikeguchi-kun used a straw. Why can't I drink without dripping? Maybe it's because the muscles I use to swallow has weakened. Today I concentrated on my mouth. Like drinking sake from a small cup, I tried to sip it little by little. I didn't choke, so I was happy.

There's another thing I felt happy about. Up to now, I couldn't do something that to most people is a matter of course. It's embarrassing to write this, but because I often couldn't get to the toilet in time, I had to keep changing my underwear. I realized the cause of the problem: I only started moving after nature called, but I couldn't move fast enough. So I decided I should go to the toilet regularly at fixed times. And it worked! - now I can manage without any accidents! I'm so happy, I want to tell someone. But it's not the kind of thing you can tell to everyone, so I'm secretly enjoying my success.

Chapter 6 : 19 Years Old [ "I May Not Last Much Longer . . ." III ]

Late Autumn

Suddenly I noticed the cicadas have stopped singing. They've passed the baton on to the bell crickets. It's getting chilly both in the morning and evening. I can't help feeling that my stamina and my energy are both deteriorating.
Is it all right for me to stay alive?
If you die, you won't leave anything behind.
Love-what a sad person I am relying only on that! Mom, is it really all right for an ugly person like me to be living in this world? Mom, I'm sure you can find something shining brightly in me. Teach me. Guide me.


Looking at the canna reeds
Blooming in the garden,
I miss you

Early this morning, I was woken up by the yelping of the puppies as they played with each other. The early morning sunlight was streaming in through the window. Lying in my futon, I watched them for a while. They've really grown up quickly. They were only yelping until recently, but now they can also growl like mature dogs. That could also be said about me . . .
I smiled a bitter smile when I thought that.

I want to go to a florist to buy a pink rose.
I want to go to a cake shop; I'll decide when I look through the window whether I want a cream puff or a shortcake.
I want to go to the liquor store; I'll say to the chunky middle-aged man with the reddish face, "Can I have a bottle of Akadama Honey Wine?" I want to give it to my brother.

My wish has come true: I was presented with a copy of Totto-chan written by Tetsuko Kuroyanagi. But leaving the enjoyment of that till later, I started on my kimekomi craft work. I have to cute the kimono cloth into several pieces of the same shape. Then I paste them on to a round wooden ball with glue. I can't use a pair of scissors well, and it's also difficult for me to fix the cloth with pins, so I only make slow progress. I'm really serious when I cut the cloth because I won't be able to complete it properly if I get the measurements wrong.

As I was about to go to sleep at night, I heard the door being knocked. (I remember a scene like this in a book written by Shinichi Hoshi.) As I said, "Come in!"m the door opened quietly and in came a young little girl . . .Yes, it was Rika.
"Aya, I have something to talk about" she said in an unusually serious manner. "Tomorrow I'm going to nursery school. I won't be able at home, so you'll have to be a good girl, all right? Don't fall over. We'll play together when I come home, all right?"
That made me cry.

I think you inwardly digest your mother's affection and it is changed into love towards other people.

When I gave peanuts to the birds, the are them happily. But as soon as I opened the wirte netting over the entrance to clean their cage, the birds suddenly flew out and disappeared. They could only fly away like that because they didn't know that they may not be able to live in the wild and that there are scary enemies out there. Please come back when you realize that . . .

Feeling sad, I wrote some letters to my teachers and friends.
"Please buy me a spiral-bound notebook like sketchbook," I asked Mom "I don't feel like writing my diary in an ordinary close-ruled notebook."
"What?" she replied. "Aren't you being a bit selfish saying you can only write your diary depending on your mood. It might be different story when your condition is bad, but right now you should think that you must write something anyway."
I learned something else from Mom's way of life. She was right. If she said, "I can't get into the mood for preparing dinner," I'd starve.

Rika visited me when I was lying down - -I was coming down with a cold. She sat beside my pillow and started drawing a picture of rabbits on the pillow cover using a maker pen - a big rabbit and a small rabbit standing next to each other. She also drew three or four circles between them. I think she intended them to be flowers.
"Aya," she said, "I thought you might be lonely sleeping alone during the night. So please make these your friends."
Her tenderness again made me cry.

I read an article in today's morning paper about a disabled person in an electric wheelchair who has done a correspondence course for twenty years so that he could acquire a clock repair qualification.

I don't develop anything. My body has stopped its emotional growth.

I wonder if there's any kind of job I could do? (My brother says there isn't, and I half agree with him.) But I don't think everything is impossible.

All I can do right now is write and do kimekomi craft work. Even if I can't have a job, I can at least help Mom by wiping the floor, folding up the washing, etc.

Today I was intending to make some more kimekomi quilt balls, but I ended up playing with my sister instead. During that time, Mom cleaned my room.
"Leaving the dirty stuff as it is - that's what animals do," she said.

I really appreciated what she did. All the hairs stuck in the carpet (over the tatami mats) had beautifully disappeared. But it became a bit too clean - I couldn't feel relaxed.

I wanted to know how Mom felt when she was cleaning my room. She had to spend half her day looking after her troublesome child . . .
"Poor Aya!" Said Ako.
"What's fun for you, Ako?" I asked.
"What's fun for you, Aya?" she replied.
"Nothing," I answered.
"Poor Aya!" she said.

Today I was training on the mezzanine floor. I practiced holding the rocking chair and letting go with both hands.

I wasn't very stable and I could only stand for about five minutes, but that's how I'm trying. Yet why can't I do it better?

My brother also said, "Poor Aya!" It was already dark outside and the bright TV screen was reflecting dimly white on his face.
I want to go somewhere spacious.
I don't like being cramped any more.
I feel so much pressure.
I can't go out because it's cold outside.
I keep thinking about death, so I'm scared.
I can't move . . . I'm beaten.
I want to live!
I can't move, I can't make money, I can't do anything useful to other people.
But I want to live.
I want to be understood . . .


Rika spread some jam thickly on a piece of bread. It dribbled onto the floor while she was eating. "What a waste!" I thought. But Mom just wiped out the jam, saying, "Too bad!" Where does this difference in attitude come from?

When I failed trying to stand up from the chair, I squashed the orange in my pocket. Feeling like Mom, I was able to think, "Too bad!"