The Catcher on the Web-Find an ALS patient’s story through the InternetYumiko Kawaguchi(Japan ALS AssociationNPO ALS/MND support center SAKURA
Ritsumeikan University Graduate School of CoreEthics and Frontier ScienceMaster’s course student)

Introduction
Exactly ten years ago I was a housewife, spending my days in gardening
in the suburbs of London.

However, now I’m managing at a temporary

employment company in Tokyo that dispatches caregivers to critically ill patients.
How my life changed! This dramatic change came as the result of making adecision of using an mechanical ventilator for my mother when she was firstdiagnosed with ALS (amyotrophic lateral sclerosis). In 1995, it was still rare tohave the home medical ventilation and there was little information available about
the home health care services with the proper medical care. Therefore, with theaids of local doctors and nurses, I began – awkwardly – to take care of my motherat home. In 2003 I formally started the home health care business, which now
serves 12 clients, 11 of whom use a home medical ventilator. Now my mother is in
the most advanced stages of ALS causing almost all of her muscles .As my motherlies in familiar environment filled with familiar noises all day long, looking over
my office desk in the living room, I am able to carry on my work while caring forher.

－101－Home Health Care in Japan and Abroad
ALS attacks 4 or 5 people out of 100,000 equally throughout the world.
As the motor neurons of the entire body selectively attacked, voluntary muscle
movement declines while the perception nerves, including the senses of sight,
sound, and touch, remain untouched and the brain continues to be protected fromdecay until the very end. Resultingly, People with ALS suffer from the loss of theircommunication ability. That mental anguish continues until one’s last breath.
Currently in Japan there are approximately 5,700 people with ALS, and1530 – about thirty percent – of them use the ventilator. In the West, the numberof death from suffocation as the respiratory muscles become paralyzed records anoverwhelming majority of patients, and in England, less than one percent of theALS patients undergo tracheostomy.

In Netherlands and Belgium where

euthanasia is legal, almost twenty percent of ALS patients choose to die through thedoctor-assisted suicide.
Furthermore, in some countries, patients may choose to discontinue theuse of such technologies. However, in Japan, it is not legally permitted to stop using
a ventilator once used.

As a discussion concerning “withholding” and“withdrawing” in medical care of those close to death is just beginning,
researches on Living Will and advanced directives for ALS are also following suit.
Prof. Rihito Kimura has pointed out that cultural background can play arole in the difficulties of attaining informed consent or personal decision-makingsince Japanese bioethics follow the Japanese characteristic of ambiguity.
Certainly Japanese ambiguity is worthy of special mention, but I will not offer an
explanation of it today. Furthermore, medical care’s Buddhist principles, while
maintaining a position separate from organized religion, have been preserved inJapan. For this reason, while in other countries it may be thought that there can be
no value to a long life, ALS patients in Japan have extended their lives throughmedical ventilators.

.

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The ALS Village on the World Wide Web
Even if ALS patients can hardly move their limbs, they are still able tocommunicate with the world via the Internet.

The latest developments incommunication technology have made it possible to input their messages into acomputer if one can move one’s fingers or toes or eyebrows or lips – any body part– just one millimeter. Using the Internet can greatly improve their quality of life,
even if they can only enter information at a speed of only five to ten words per
minute. Given this, a village-like ALS network has emerged on the Web, whereusers spend the day gathering at their homepages, bulletin boards, and mailing lists.
I have met many ALS people online and there are even some who talk vigorouslyon the Web, although they can’t move their body at all
One day I received an email from female ALS patient aroundforty-year-old who lived more than one hour on the train, west of Tokyo near theocean. It had been five years since her ALS first appeared and she had decided
that even though breathing had become very difficult, she would not starttracheostomy and die instead. After several email exchanges, I came to realizethat Shiori (a pseudonym) had no home doctor, no regular nurse visits, and herhome caregiver had quit her job due to business circumstances, and Shiori was inan extremely lonely situation. However, she did have a husband and a daughter,both of them worked in the city , so that several days a week, she was completelyalone in the afternoon. When she read my homepage she said she wanted to help
me. In our emails we talked about the regional differences in medicine and healthservices, and how to get health workers to deal more seriously with support forincurable diseases.

Shiori always gave such calm and composed advice andeventually she even directly inspire the local government health center to empower
the municipal staff and specialists.
Of course we also spoke about many other things through internet. And I
always wanted to see Shiori’s condition myself, so I decided to visit her at herhome.
－103－Chance meeting with Resignation
On a clear autumn day a half year after we began to know each other on
the web, I went to meet Shiori. Just as the directions she gave me by email , I
took the train to the West and left the train station ,walked a short while to find acute house facing the sea. And just as she had said, the front door was open and I
was greeted by a black and brown cat in the entrance way.
I could hear Shiori’s voice from inside the house saying “uh―, uh—“.
Following the cat’s lead, I saw Shiori’s appearance from behind as she typed at her
computer. Her illness seemed to have progressed much further than I had thought.
She wasn’t even able to turn around to see if I was there. I came closer to her andpeered into the computer screen on her desk where she had typed “welcome”.
Then she printed out for me a picture of the sea taken from her window in the earlymorning. It was such a beautiful sunrise that, without thinking, tears welled up inme.
I took a seat in the chair beside her as Shiori used the mouse to enterwords onto the screen. Entering each letter took time. When her paralyzed hand
would fall from the mouse, I would help her place it back as we continued ourconversation at a slow pace. Only an animal-like groan could come from herparalyzed lips and saliva would drip from her powerless mouth to be absorbed by
the towel wrapped around her neck. However, she was able to type perfect words
onto the computer screen, and she explained her care chart how she used it to give
instructions to her caregiver. She said she had already, on her own accord,
instructed all of her care to the management of the nursing insurance. She also
showed me the recipes she had written out for her daughter. As we talked I
became more convinced that if Shiori used a medical ventilator she would be able
to live a sufficiently independent life.
In Japan, generally the choice of using an medical ventilator depends on
the personal decision of the patient, and family members are recommended not to－104－

force the patient into a decision. Therefore, while patients feel lonely, and alongwith the severe pain of both the social side of ALS as well as the disease itself, theirmental deliberations continue a long time. However, it is necessary to emphasize
the lack of help by neural specialists, some of them believe that using a ventilator
does not increase the quality of patient’s life and therefore there is no value to lives
using a ventilator. Furthermore, such doctors are indifferent to the inadequacies ofwelfare that affect the patients’ decisions.
For example, formally there is a system which protects the security ofpatients who take a long-term medical treatment at home with a reliable medical
team, However Shiori had no home doctor and the local administration neglected
its policies concerning medical care for incurable diseases.
In addition, her family had to care for her 24 hours a day, largely withoutbreaks. When asked why, it was because requesting a nurse would cost 5,000 yenper hour.

Given these unfavorable social circumstances, using a medical

ventilator would significantly increase the burden of the family. The choice ofusing a medical ventilators is not simply the matter of an individual’s preferences.
The circumstantial conditions of society should also come into question.
According to an ALS patient Misao, if one wants to declare that ALS issimply a disease in which one becomes unable to move, it is possible. However she
also says that continuous and precise nursing care is necessary over the long term
rather than medical treatments. This is essentially a problem of politics and not
something patients should bear alone.
As the ability to move declines, dramatic changes in daily life areunavoidable. Confronting the changes, the patient as well as the family becomes
irrational. Given this, Prof. Frank calls his first approach to the patient and family
as “chaos narratives”. And also If ALS patients come to believe and accept theirdoctor’s negative attitudes toward home medical ventilation without dealing with
their own body, they come to face death .At this stage, We can find “the narrativesurrender ”as Prof.Frank named .
－105－However, once autonomy is temporarily lost, there are some patients who
begin to search for a life path through which they supplement their lost abilities.
Shiori is such a person. When I met her she already had her own narrative andwas prepared for the obstacles that ALS might throw to her. She talked about her
everyday life using a “quest story”, which is presented to the public on her
homepage. The day we met, she wrote in her Web diary as follows,“It is difficult for one person to understand another. But if we give up
to communicate simply because it is difficult to talk and to reach mutual
understanding, we become blind to the essence of the matter. When a problem
arises, if we search for the causes and try to solve it, a possible path will open up.”In the end, Shiori and I were unable to reach a perfect mutual
understanding of each other’s opinions. Shiori thoroughly believed that refusing a
medical ventilator was alright. And I tried to frantically convey her daughter’s
feelings as well as my own thoughts on the matter. Even for me, now that thecommunication with my mother has become severed, having a conversation with aphilosophic patient is one of the ways to listen to my mother’s “silent voice”.
However, when Shiori showed me the reality of her own life, she also
showed me one of the essentials of enduring such a difficult disease as ALS. Herdetermination was firm and her decision was certainly different from that of theenergetically living ALS patients around me. For us, that afternoon we spent
together cannot be repeated and will be difficult to forget.
Simply Listening
Humans are probably the only creatures who are able to search for avalue in their relationships. For example, even in the world of the Internet where
we can’t see each other’s face, Shiori is an irreplaceable person for us. That is tosay, because one cannot see her figure through the PC screen, we would not be able
to tell the difference if the percentage of her body occupied by a machine were tochange from 10 percent to 90 percent. Therefore, as I want her to continue to live－106－and converse, I have a one-sided wish which is different from her own, whichshows the meaning of her existence for me. And, as for the people who want todie, although I cannot easily agree with them, I can learn from them. For example,
for seriously ill patients persevering with a cruel life, avoiding easy sympathy, pity,and hospitality are proper manners. I simply want to affirm each and every
individual existence until the end, but if that is against someone’s own decision, I
will not attempt to force the person to change. I just hope that as I carry on adialogue, the patient’s narrative comes to change even by a little.

I havesomething close to a prayer – by simply listening to the stories of patients who havere-questioned their ailing bodies, they can be encouraged to narrate freely. In
other words, there is no need for psychological or specialist training – just as longas there is an audience, the patient will begin to talk.
Furthermore, while narrating in order to reclaim their denied bodies, they
modify “narrative theory” a little. This is something that changs greatly before
my eyes.
Afterwards
When the year 2005 arrived, Shiori’s emails suddenly stopped.
Probably as ALS progressed, it became impossible to move the computer mouse.
However, Shiori should still be in the same room overlooking the sea and one cansense her presence in the conversations on her homepage and bulletin board.
However, I have never called her house to check if she is still with us. It is simply
that confirmation of life or death is frightening. I pray that there will be a change
in her narrative from the decision “I don’t want to be a burden on my family” to “Iwant to use a home medical ventilator and live together with my family”. If she
decides to continue to live, I’m sure I will still receive emails.

－107－

Acknowledgements
I wish to thank my teacher, assistant Prof. Tatsuya Sato for inspiring
me to undertake this speech and for assisting me to write this paper, and also to
thank Prof. Reiko Gotou for checking the English words on this paper. And I want
to dedicate this speech to my mum, and my best friend Misao, and other ALS
friends whom I met through the internet.
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