Postscript by Shioka Kito (Aya's mother)

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 seemes
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 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.

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 Chalanged, 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."