Maybe she just wants to breathe
KAWAGUCHI Yumiko December 15, 2009 Igaku-Shoin，270p.
■KAWAGUCHI Yumiko December 15, 2009 Maybe she just wants to breathe，Igaku-Shoin，270p. ISBN-10: 4260010034 ISBN-13: 978-4260010030 2100yen ［amazon］／[kinokuniya] ※ b02.
◆Introduction of Contents by the Publisher/Author
◆Information about the Author
◆Table of Contents
◆Excerpt from Foreword
■Contents Introduction by the Publisher/Author
Affirmation of the “life in a vegetative state”
Intentions of ALS patients whose words and movements are blocked can be understood only via their physical states. Backers for my mother who died after experiencing locked-in syndrome in which even blinking was difficult were physical cares for the body such as “not sympathy but a mechanical ventilator” and “not attentive listening but fine adjustments for the body.”
The author who views the world of care through her unprecedented fine lens accepts the “life in a vegetative state together with the whole body” of her mother who survived against the gravity.
■Information about the Author
KAWAGUCHI Yumiko was born in 1962. She currently serves as board of Japan ALS Association and graduate student at Graduate School of Core Ethics and Frontier Sciences, Ritsumeikan University. Kawaguchi’s mother was affected by ALS in 1995. After fighting against the disease for 12 years, she passed away in September 12, 2007.
■Table of Contents
Chapter 1. Silencing Persons
Start of Sadness
Things that Are Stayed at this Side
Encounter and Distance
Promise Relating to Medical Services
Spirituality and Reality
The Father and Sister
People who Have Past by
Standing near by the Indecisive Person
Chapter 2. Records of an Wet Body
1. Being Rarer than Lottery
2. Contact Failure between the Body and a Switch
3. Traveling of the Wet Cotton-like Body
4. Toileting Exceeding Usual one
5. Unfamiliar Toileting with the Withering Body
6. Hearings under the Sea
7. Leady Eyelids
8. Jaw Joint Incapable to Go against Gravity
9. 1L Saliva
10. Water Circulating throughout the Body and the World
11. Tube to A Hole
12. Natural Food via Tube
13. Traps and Parties
14. Signs from the Skin
15. The Final Message Conveyed via her Eyes
16. Heat of Patients
17. Perspiratory Communication
Chapter 3. From Transmitting to Receiving
1. Midnight at Denny's
4. Meanings of Being Made
5. In Front of the Brain Machine
6. Obligations to Living
7. At the ALS Village in WWW
Final Chapter: Natural Death
August 27, 2007 / Gravely-ill Mother / Father’s Hospitalization /
Mother’s Doppelganger? / Foot Massage /
P-chan and P Wave / True Farewell /
Morning without the Mother / The Same Ceiling / The Funeral in Sunset
■Excerpt from Foreword
When my mother found a malignant tumor in her left breast, I was living in New Malden, a suburb of London located on the southern edge of the Richmond Park spreading across the Southwest area of the River Thames.
Since my partner who had worked for a Japanese banking institution transferred to its London branch, my family had started our overseas life for the second time since spring 1993. As my mother planned to undergo surgical dissection of her breast cancer in spring 1994, I temporarily returned to Japan with my two children aged one and five years.
That is the start of days of unpeaceable predictions for my family.
According to my mother, she first felt a lump in her breast when she bathed at a hot spring at the time of traveling to Shinshu with her friends. She said that at that moment, she saw as if there were the faint appearance of the shaven heads of three nuns beyond the steam. Hearing of this event in such a way, the scene sounded dreamy and calm. However, my mother actually had an ominous foresight about it.
（Chapter 1. Silencing Persons）
“As I have had back pain sometimes, I felt it was not the initial stage.”
It was the time in Japan when the terms of “patient centered treatment” or “informed consent” were widely used and disclosure of cancer was common. My mother also received the very-well explanation by a surgeon at a university hospital and prepared to fight the disease.
At this time, she as a patient was the person who accepted the disease most boldly among the family and everything was under her control. As all procedures for the surgery were confirmed in consultations between my mother and the doctors in charge, we always received reports after the facts. As prudent measures were taken for her angina on the day of the surgery, it took her quite a long time to come out of the anesthesia. My father and sister who did not know the details of the surgery were just upset and worrying about my mother in the corridor of the hospital.
My mother was discharged two weeks after the surgery. Therefore, my temporary return to Japan was nothing more than a relaxed home visit for me. She enjoyed meeting her grandchildren and seeing how they had grown. My mother prepared signature dishes of boiled foods several times as part of her rehabilitation. However, as my mother predicted, the cancer was so progressed from the initial stage, that extremely cautious treatments were conducted rather than breast-conserving therapy.
On looking at the operative scar, axillary lymph nodes were largely removed and costae were transparently visible under the skin of her left chest where the muscle had been removed. Contrasting with her cheerful behavior, the scarring revealed the invasiveness of the surgery and the serious reality. On seeing my distress, she sighed and smiled helplessly.
“I will never be able to go to a hot spring again.”
“Daddy told me that I have become an amputee” she added in a staccato fashion.
By expressing his feeling only in that way, my father could not disguise his own sadness.
He had no words of consolation for his wife who lost her breast and confidence as a woman.
It can be said that such a reaction to her is typical of him. In the present, however, my mother at that stage lost “only” one of her breasts.
The writer of this book, Kawaguchi, has receievd the 41st Oya Soichi Nonfiction Award on April 5, 2010.
■Introduction via "Smith's Bookshelf" of "World Business Satellite" on May 14, 2010 (TV Tokyo)
◆Selection of one sentence from the book byNAGATA Toyoomi
"All patients, no matter how severe they are, are filled with consciousness that they themselves should be treated equally as a human being to the last breath." (p.108)
◆February 9, 2013 "Taro Aso may, for once, have a point" （The Japan Times）