**2.1 The life review of Hansen's disease survivors**

*Quality of Life - Biopsychosocial Perspectives*

Spirituality's conceptual structure and Hansen's

2-3. Development of spiritual pain into cancer

**3. Overview of history of Hansen's disease in** 

3-1. From the ancient times to the end of the

3-2. From establishing a modern nation (the Meiji government) to the end of World War

3-3. From developing the magic bullet 'Promin' to abolishing the Leprosy Prevention Law (Act No. 214 of 1953 らい予防法)

3-4. After abolishing the Leprosy Prevention

**5. Conclusion 5. Conclusion**

*Table contents about the first report and the second report about 'Spirituality and Hansen's disease'.*

**4.Life review of Hansen's disease survivors** 4-1. Introduction to the National Sanatorium Oshima Seisho-en, where the survivors who have shared their life review live 4-2. The life review book of Hansen's disease

**2. Quality of life and spirituality** 2-1. What is quality of life (QOL)? 2-2. What is spirituality?

2-4. Spiritual pain and total pain 2-5. What is spiritual well-being? 2-6. Quality of life and total pain

feudal era ( –1867)

II (1868–1945)

(1943–1996)

Law (1996–)

survivors

terminal care

**1. Introduction 1. Introduction**

bomb survivors.

spiritual pain?

disease history

**Japan**

development of individuality as spiritual well-being. Therefore, their experiences are very important and similar to those experienced by Auschwitz or atom

In this two-part study (see **Table 1**), we discuss spirituality though the experiences of Hansen's disease survivors. In the first report, we discuss the conceptual structure of spirituality and QOL and explain the history of Hansen's disease. In the second report, we answer the following questions through an analysis of a Hansen's disease survivor's life review: What is the level of suffering or 'spiritual pain' that makes a person consider suicide? What causes spiritual pain in those suffering with Hansen's disease? Furthermore, why do people with Hansen's disease experience spiritual well-being and development of individuality despite their

**Part one Part two**

Accounts of spiritual pain and spiritual well-being by Hansen's disease survivors

**disease survivor**

survivors

life review

of life

life (Ceramics) 3-5. After the turning point

**disease survivors**

situations?

**Appendix**

**2. Spiritual pain experienced by a Hansen's** 

2-1. The life review of Hansen's disease

2-3. Analysis method for construction 2-4. Construction of Mr. Takahisa Yamamoto's spiritual pain

**3. The process of recovering from spiritual pain for a Hansen's disease survivor** 3-1. What sustained Mr. Takahisa Yamamoto through the suffering? 3-2. Relieving sufferings; preparing to accept turning points

3-3. Turning point 1: Changing the flow

3-4. Turning point 2: Meeting a friend for

**4. Spiritual well-being of aging Hansen's** 

4-1. How do individuals live energetically despite having experienced extreme

4-2. Construction of spiritual well-being; Introduction of the study

Mr. Takahisa Yamamoto's life review (An excerpt only from the section that

discusses spiritual pain)

2-2. Overview of Mr.Takahisa Yamamoto's

**250**

**Table 1.**

Our book contains life reviews of 19 Hansen's disease survivors living in Oshima Seisho-en (see **Figure 1**) [1]. The significance of publishing the book is explained in the first report. Each survivor talks about their childhood before having Hansen's disease, the shock and suffering that followed the diagnosis, till the time that they entered the sanatorium, discrimination and exclusion in their hometown, the parents affection and worry to protect them, inconvenience faced by their brothers and sisters, various symptoms and cures, the bad experiences in the sanatorium, romantic alliances, support from friends at the sanatorium, fighting against the government, and current feelings and thoughts in their old age. The subject of the book is summarized as "*Deeply Deeply Closing Our Eyes in Order to See What We Truly Should See,*" which is the subtitle of the book and has been penned by poet Ms. Yoshiko Takagi.

**Figure 1.** *Our life review books [1].*

In this paper, we select the life review of Mr. Takahisa Yamamoto, who discusses the reality of spiritual pain. His detailed account is added as an Appendix 1.

#### **2.2 Overview of Mr. Takahisa Yamamoto's life review**

Mr. Takahisa Yamamoto was a bright boy who aimed to enter the national university to become a doctor or join a trading company. He was hopeful that his parents would give him the independence to achieve his dream. He was diagnosed with Hansen's disease at the age of 15. He received treatment from Dr. Noboru Ogasawara at Kyoto university hospital and at home. Dr. Ogasawara opposed forced internment and advocated outpatient treatments. Yamamoto decided to enter the sanatorium at the age of 19. After entering the sanatorium, he indulged in reprobate conduct and began gambling and tried to escape from working. He also suffered and felt lonely as he could not go out. He married at the age of 31. The friends of his wife opposed the marriage and his wife asked him, Will you change your habits after getting married?", but his reprobate conduct continued. The turning point for him was at the age of 48 when he was selected as a representative in Oshima Seisho-en for the National Hansen's Disease Sanatorium Residents' Council, and he moved to Tokyo. He came back to Oshima Seisho-en at the age of 52 and became the chairman of Residents' Committee in Oshima Seisho-en. At the age of 60, he was introduced to ceramics, and that became his passion. When he told us about his life, he was 81 years old. He spent the rest of his life as the chairman and continued making ceramic products. He died at the age of 83 in 2016, and his remains were collected in a handmade ceramic cinerary urn and kept at the ossuary in Oshima Seisho-en.

#### **2.3 Analysis method for construction**

First, we underlined his experiences about spiritual pain and created a shadow summary to explain it. Second, we extracted a shadowed summary and sorted it based on similar meanings. Third, we schematized Mr. Yamamoto's experience. Perspectives analyzed were: "why did Mr. Yamamoto have spiritual pain?" and "what was the identity of the spiritual pain?" Lastly, we checked if the figure could show his experience and clarify the mechanism of why he had spiritual pain and the essence of his spiritual pain.

#### **2.4 Construction of Mr. Takahisa Yamamoto's spiritual pain**

We illustrate the construction of Mr. Yamamoto's spiritual pain in **Figure 2**. *Italic letters* show the same concepts as **Figure 2**.

Mr. Yamamoto was *full of enthusiasm for the future* and *wanted to become independent and set out on my own*; therefore, he was a boy with *strong autonomy and independence*. When he was *diagnosed with Hansen's disease*, and he knew *I cannot go out of the sanatorium till I die*. He realized that *all his dreams and hopes cut off*, and *he cannot set out on his own and carve out his life.* He *crashed by despair*, he thought "*My life is over and I can only keep breathing*." Mr. Yamamoto *wanted to die*, but he *could not die easily*. Therefore, he felt *lethargic, slapdash, desperate, let things take their own course, nihilistic, and "no matter what I do, it will all be in vain,"* and he began to *shirk patient labor*, getting *momentary pleasure by gambling*, and *stay outside the system and rule*. *He did not feel like living*, and *he asked himself 'why am I alive'*, and he wallowed in *self-criticism*; *he scolded himself about spending without purpose again today, saying "Are you even human? Is it not normal to die?*"

This negative cycle was *enhanced* by comparison with others. To begin, he *compared himself and his classmates who were setting out on their own*, and he thought "*I was the only dropout*" and felt *miserable*. In addition, he noticed that *there were* 

**253**

**survivor**

deepened his despair.

**Figure 2.**

These thoughts enhanced his irresponsible attitude.

*Spiritual pain experienced by Hansen's disease survivor Mr. Takahisa Yamamoto.*

*Going back and forth between life and death*.

*Spirituality and Hansen's Disease: Spirituality' Conceptual Structure and Hansen's Disease...*

*no elderly persons* in the sanatorium, and he realized "*life will not be very long, my life will end at about 50 years of age,"* therefore he thought "my life is over", and this

At last, he compared himself with *fellows who committed suicide because they despaired their life*, and Mr. Yamamoto thought "*fellow had a normal mind. I can callously live in a place like this because I have an abnormal mind."* In addition, he compared dogs and cats, and thought *"Even dogs and cats can fend for themselves. I am living on handouts* 

*from others. I cannot carve out my life."* This comparison enhanced self-criticism.

*Negative cycle* (I cannot set out on my own and carve out my life→Crashed by despair→I want to die→I cannot die easily→slapdash・Nihilistic→ I do not feel like living→ I ask myself why I am alive→self-criticism) continued for 10 to 20 years. Essentiality of the negative cycle, in other words, Mr. Yamamoto's spiritual pain is *Loss of autonomy and independence for carving out my life*, and for that reason, he was

**3. The process of recovering from spiritual pain for a Hansen's disease** 

Mr. Yamamoto's recovery from spiritual pain can be seen at two turning points. The first, when he visited the Tokyo office of the National Hansen's Disease Council

Next, although *fellows made a national residents' committee, and they fight against the government*, he believed that this *fight was meaningless, and I felt that it was all in vain, as I cannot go out until I die. I will be opportunistic and take the non-political course*. In addition, although *many fellows work diligently*, he thought "*why do they live in moderation, when we live without freedom and privacy. I will be unregulated.*"

*DOI: http://dx.doi.org/10.5772/intechopen.92735*

#### *Spirituality and Hansen's Disease: Spirituality' Conceptual Structure and Hansen's Disease... DOI: http://dx.doi.org/10.5772/intechopen.92735*

**Figure 2.**

*Quality of Life - Biopsychosocial Perspectives*

**2.3 Analysis method for construction**

*letters* show the same concepts as **Figure 2**.

essence of his spiritual pain.

In this paper, we select the life review of Mr. Takahisa Yamamoto, who discusses

the reality of spiritual pain. His detailed account is added as an Appendix 1.

Mr. Takahisa Yamamoto was a bright boy who aimed to enter the national university to become a doctor or join a trading company. He was hopeful that his parents would give him the independence to achieve his dream. He was diagnosed with Hansen's disease at the age of 15. He received treatment from Dr. Noboru Ogasawara at Kyoto university hospital and at home. Dr. Ogasawara opposed forced internment and advocated outpatient treatments. Yamamoto decided to enter the sanatorium at the age of 19. After entering the sanatorium, he indulged in reprobate conduct and began gambling and tried to escape from working. He also suffered and felt lonely as he could not go out. He married at the age of 31. The friends of his wife opposed the marriage and his wife asked him, Will you change your habits after getting married?", but his reprobate conduct continued. The turning point for him was at the age of 48 when he was selected as a representative in Oshima Seisho-en for the National Hansen's Disease Sanatorium Residents' Council, and he moved to Tokyo. He came back to Oshima Seisho-en at the age of 52 and became the chairman of Residents' Committee in Oshima Seisho-en. At the age of 60, he was introduced to ceramics, and that became his passion. When he told us about his life, he was 81 years old. He spent the rest of his life as the chairman and continued making ceramic products. He died at the age of 83 in 2016, and his remains were collected in a handmade ceramic cinerary urn and kept at the ossuary in Oshima Seisho-en.

First, we underlined his experiences about spiritual pain and created a shadow summary to explain it. Second, we extracted a shadowed summary and sorted it based on similar meanings. Third, we schematized Mr. Yamamoto's experience. Perspectives analyzed were: "why did Mr. Yamamoto have spiritual pain?" and "what was the identity of the spiritual pain?" Lastly, we checked if the figure could show his experience and clarify the mechanism of why he had spiritual pain and the

We illustrate the construction of Mr. Yamamoto's spiritual pain in **Figure 2**. *Italic* 

Mr. Yamamoto was *full of enthusiasm for the future* and *wanted to become independent and set out on my own*; therefore, he was a boy with *strong autonomy and independence*. When he was *diagnosed with Hansen's disease*, and he knew *I cannot go out of the sanatorium till I die*. He realized that *all his dreams and hopes cut off*, and *he cannot set out on his own and carve out his life.* He *crashed by despair*, he thought "*My life is over and I can only keep breathing*." Mr. Yamamoto *wanted to die*, but he *could not die easily*. Therefore, he felt *lethargic, slapdash, desperate, let things take their own course, nihilistic, and "no matter what I do, it will all be in vain,"* and he began to *shirk patient labor*, getting *momentary pleasure by gambling*, and *stay outside the system and rule*. *He did not feel like living*, and *he asked himself 'why am I alive'*, and he wallowed in *self-criticism*; *he scolded himself about spending without purpose again today, saying "Are you even human? Is it not normal to die?*" This negative cycle was *enhanced* by comparison with others. To begin, he *compared himself and his classmates who were setting out on their own*, and he thought "*I was the only dropout*" and felt *miserable*. In addition, he noticed that *there were* 

**2.4 Construction of Mr. Takahisa Yamamoto's spiritual pain**

**2.2 Overview of Mr. Takahisa Yamamoto's life review**

**252**

*Spiritual pain experienced by Hansen's disease survivor Mr. Takahisa Yamamoto.*

*no elderly persons* in the sanatorium, and he realized "*life will not be very long, my life will end at about 50 years of age,"* therefore he thought "my life is over", and this deepened his despair.

Next, although *fellows made a national residents' committee, and they fight against the government*, he believed that this *fight was meaningless, and I felt that it was all in vain, as I cannot go out until I die. I will be opportunistic and take the non-political course*. In addition, although *many fellows work diligently*, he thought "*why do they live in moderation, when we live without freedom and privacy. I will be unregulated.*" These thoughts enhanced his irresponsible attitude.

At last, he compared himself with *fellows who committed suicide because they despaired their life*, and Mr. Yamamoto thought "*fellow had a normal mind. I can callously live in a place like this because I have an abnormal mind."* In addition, he compared dogs and cats, and thought *"Even dogs and cats can fend for themselves. I am living on handouts from others. I cannot carve out my life."* This comparison enhanced self-criticism.

*Negative cycle* (I cannot set out on my own and carve out my life→Crashed by despair→I want to die→I cannot die easily→slapdash・Nihilistic→ I do not feel like living→ I ask myself why I am alive→self-criticism) continued for 10 to 20 years. Essentiality of the negative cycle, in other words, Mr. Yamamoto's spiritual pain is *Loss of autonomy and independence for carving out my life*, and for that reason, he was *Going back and forth between life and death*.
