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

## **4.1 How do individuals live energetically despite having experienced extreme situations?**

Half of the life of Hansen's disease survivors was filled with suffering because of discrimination and exclusion, containment and lifelong isolation, human right violation in sanatorium, loss of opportunity of coming back to the society by delay

**257**

**Figure 5.**

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

or abolition of the law, etc. Now the average age of these survivors is 86, and some of them have dementia, while others exhibit withdrawal symptoms. On the other hand, there are some survivors who are living energetically. How do they manage this despite having experienced extreme situations? In this section, we introduce the aging Hansen's disease survivors' spiritual well-being, which is clarified by five survivors selected strictly from 77 survivors (at that time of interview) of Oshima

Purpose: To clarify the spiritual well-being of aging survivors of Hansen's disease

and explore the question "How do individuals live energetically despite having

Method: (1) Participants: aging Hansen's survivors living in the sanatorium, living with vigor and liveliness, who were selected in a strict manner. (2) Data collection: semi-structured interviews. (3) Analysis: qualitative and inductive methods. Results: (1) Characteristics of the selected survivors are as follows: relatively younger, fewer unmarried, entered the leprosarium at teenage, had held a managerial position in the sanatorium, fewer sequelae, and believed in religion, compared to all the residents in the sanatorium. (2) Narrative data were integrated through the following seven categories: <1. Continue to have strong bonds with one's spouse and memory of parents' family>, <2. Healed sufferings by living in a sanatorium located on an island with a beautiful view>, <3. Possess the self-confidence to overcome the difficulties>, <4. Live daily life with delight and worth even on a secluded island>, <5. Continue one's efforts despite aging>, <6. Obtain social approval>, and <7. Engage in

Discussion: The spirituality of survivors of Hansen's disease had a trilaminar structure, comprising the following: establishing the *existential foundation of a sustained self*, *living in the moment but contemplating the future as well*, and *dovetailing within the society and transcending space and time*. The participants had achieved the developmental task of ego integrity in old age. If compensatory mechanism is met, we might be able to develop an existential foundation for the sustained self and

*Structure of spiritual well-being in aging survivors of Hansen's disease. Transcription from Yamao et al. [2].*

**4.2 Construction of spiritual well-being; Introduction of the study**

Construction of spiritual well-being as shown in **Figure 5** [2].

social interactions with the next generation and outside the island>.

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

experienced extreme situations?"

Seisho-en.

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

or abolition of the law, etc. Now the average age of these survivors is 86, and some of them have dementia, while others exhibit withdrawal symptoms. On the other hand, there are some survivors who are living energetically. How do they manage this despite having experienced extreme situations? In this section, we introduce the aging Hansen's disease survivors' spiritual well-being, which is clarified by five survivors selected strictly from 77 survivors (at that time of interview) of Oshima Seisho-en.

#### **4.2 Construction of spiritual well-being; Introduction of the study**

Construction of spiritual well-being as shown in **Figure 5** [2].

Purpose: To clarify the spiritual well-being of aging survivors of Hansen's disease and explore the question "How do individuals live energetically despite having experienced extreme situations?"

Method: (1) Participants: aging Hansen's survivors living in the sanatorium, living with vigor and liveliness, who were selected in a strict manner. (2) Data collection: semi-structured interviews. (3) Analysis: qualitative and inductive methods.

Results: (1) Characteristics of the selected survivors are as follows: relatively younger, fewer unmarried, entered the leprosarium at teenage, had held a managerial position in the sanatorium, fewer sequelae, and believed in religion, compared to all the residents in the sanatorium. (2) Narrative data were integrated through the following seven categories: <1. Continue to have strong bonds with one's spouse and memory of parents' family>, <2. Healed sufferings by living in a sanatorium located on an island with a beautiful view>, <3. Possess the self-confidence to overcome the difficulties>, <4. Live daily life with delight and worth even on a secluded island>, <5. Continue one's efforts despite aging>, <6. Obtain social approval>, and <7. Engage in social interactions with the next generation and outside the island>.

Discussion: The spirituality of survivors of Hansen's disease had a trilaminar structure, comprising the following: establishing the *existential foundation of a sustained self*, *living in the moment but contemplating the future as well*, and *dovetailing within the society and transcending space and time*. The participants had achieved the developmental task of ego integrity in old age. If compensatory mechanism is met, we might be able to develop an existential foundation for the sustained self and

#### **Figure 5.**

*Structure of spiritual well-being in aging survivors of Hansen's disease. Transcription from Yamao et al. [2].*

*Quality of Life - Biopsychosocial Perspectives*

work and get honor.

**Figure 4.**

**3.5 After the turning point**

*Ceramics made by Mr. Takahisa Yamamoto.*

and found useful ways to use his time.

despair. Therefore, ceramics became his friend for life. When he successfully made a shape, he wanted other people to see his artwork. The head of the sanatorium sent his work to a gallery off the island, and this gave him the opportunity to present his

Mr. Yamamoto was a boy with a strong sense of autonomy and independence to carve out his life, and he hoped to have the independence to do so at an early age. His spiritual pain occurred as he was trapped in an environment where he could not carve out his own life. In other words, his strong desire to carve his life was lost and he stagnated; as a result, he blamed himself, and this negative energy brought despair. Gambling helped him to get rid of this negative energy. Being the Chairman of the Residents' Committee and making ceramics helped him to channelize his energy. It gave him an outlet for the enormous energy, and he stopped wasting time

Although initially he could not endure the same as life seemed to be dull and infinite, he believes that he can endure it now, as he believed that as he had aged, and he did not have as much time left. Therefore, if he was still healthy and young, he could go to Tokyo, again, but at this age, he preferred to stay at the sanatorium. Finally, he generalized his life saying that it was "Overall, a half-baked life," and he therefore did not have the sense of accomplishment of having carved his own life.

**4.1 How do individuals live energetically despite having experienced extreme** 

Half of the life of Hansen's disease survivors was filled with suffering because of discrimination and exclusion, containment and lifelong isolation, human right violation in sanatorium, loss of opportunity of coming back to the society by delay

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

**256**

**situations?**

achieved ego integrity at old age despite having to live in unfortunate circumstances. Thus, if we support such individuals, we can promote compensatory mechanism.

## **5. Conclusion**

In this study, after discussing the conceptual structure of spirituality in the first report, we conducted an analysis of spiritual pain and discussed Mr. Takahisa Yamamoto's experience as a Hansen's disease survivor. In addition, we introduced our research on the spiritual well-being of aging Hansen's disease survivors.

Mr. Yamamoto's spiritual pain was because of *Loss of autonomy and independence for carving out my life* and *Going back and forth between life and death*, and he was stuck in the negative cycle for almost 20 years. In a psychiatric study on differences between the mental condition of condemned criminals and life imprisoned criminals, condemned criminals acted violently and were easily distracted and stressed, while the life imprisoned criminals exhibited emotional paralysis and regression. [3] The reason for this difference is that while condemned criminals faced their death every day, because the date of execution is notified to the condemned criminal only on the morning of the appointed day, life imprisoned criminals repeat the same daily life until they die. In other words, the life of condemned criminals is condensed to 1 day, while that of life imprisoned criminals is diluted across their lifetime. Mr. Yamaomto's sufferings are similar to that of criminals imprisoned for life, as both experience difficulties with delight and hope, owing to a repetitive and unchanging daily life. As a matter of truth, Hansen's disease is not crime, although it is one of the many diseases in which human rights were violated. We must hand down this information and stop it from being forgotten, because Hansen's disease has a cautionary tale to ensure that the same mistake is never repeated.

Next, Mr. Yamamoto's recovery from spiritual pain was achieved with time and reflection, and then the bellwethers, who continued to be there during his time of suffering time, led to a turning point to change the flow of his life, and he spent a substantial amount of time to get approval from others and to meet their expectations. By then, he had stopped his undisciplined way of wasting time and had found out how to use his time productively. Some aging Hansen's disease survivors tend to withdraw as they are not able to get a catharsis against the past bitter experiences. In addition, right now, some young people have lost or cannot find their reason to live, and they withdraw or become desperate, therefore recovering from spiritual pain is a universal issue throughout ages. In Mr. Yamamoto's recovery process, there were some people who were affectionate toward him and were concerned about him. These people included his mother and sisters who expressed their affection, his wife, who sustained their married life, the elders in the residents' committee who created the opportunity for changing the flow of his life, good friends in his new world, and old friends who were awaiting his return. It is evident that humans can only be healed by humans. Success in recovering from spiritual pain is dependent on people who continue to support a person during their suffering and recovery. If we think about the support for people who are lost or unable to find the hope to live, creating a support system in the period of suffering and recovery is important. In the current times, human relationships are sparse and require patience.

The construction of spiritual pain and recovery from it in the chapter is from the point of view of one survivor; therefore, the analysis cannot get be universal. We must continue to analyze the information. In addition, a certain survivor said, "I will take real my sufferings to my graveyard." Talking about sufferings is difficult for Hansen's disease patients/survivors. We must realize that it is also difficult to understand the real pain of the suffering, and we must have intellectual humility.

**259**

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

Finally, the spiritual well-being of aging Hansen's disease survivors is a trilaminar

structure, comprising of the following: *establishing the existential foundation of a sustained self*, *living in the moment but contemplating the future as well*, and *dovetailing within the society and transcending space and time*. Development tasks of old age include integration vs. despair (wisdoms). The existence of spiritual well-being in aging Hansen's survivors shows two things. The first, when we experience unbearable hardship, if the compensatory mechanism works, we can sublimate sufferings and achieve incomplete development tasks at each stage. The second, "integration" of old age's development task means the person completes integration with spirituality. This shows that "gerotranscendence" as stated by Erikson [4] is seen in Hansen's disease survivors. Although a lot of negativity has been focused on Hansen's disease, utilizing the survivors' wisdom and strength for solving problems in future will help to regain their reputation. Finally, we append "Oshima at springtime" through photographs, taken by Mr. Kiyosi Wakibayashi during his life. He is one of Hansen's disease survivors who is an

*Ōshima at springtime (the green roof in the center is the ossuary) (Photograph by: Kiyoshi Wakibay).*

We thank Mr. Yamamoto and Hansen's disease survivors living in Oshima Seisho-en. This work was supported by JSPS KAKENHI Grant Number 18H03075. We would like to thank Editage (www.editage.com) for English language editing.

example of spiritual well-being (see **Figure 6**).

We have no financial relationships to disclose.

**Acknowledgements**

**Figure 6.**

**Conflict of interest**

*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 6.** *Ōshima at springtime (the green roof in the center is the ossuary) (Photograph by: Kiyoshi Wakibay).*

Finally, the spiritual well-being of aging Hansen's disease survivors is a trilaminar structure, comprising of the following: *establishing the existential foundation of a sustained self*, *living in the moment but contemplating the future as well*, and *dovetailing within the society and transcending space and time*. Development tasks of old age include integration vs. despair (wisdoms). The existence of spiritual well-being in aging Hansen's survivors shows two things. The first, when we experience unbearable hardship, if the compensatory mechanism works, we can sublimate sufferings and achieve incomplete development tasks at each stage. The second, "integration" of old age's development task means the person completes integration with spirituality. This shows that "gerotranscendence" as stated by Erikson [4] is seen in Hansen's disease survivors. Although a lot of negativity has been focused on Hansen's disease, utilizing the survivors' wisdom and strength for solving problems in future will help to regain their reputation. Finally, we append "Oshima at springtime" through photographs, taken by Mr. Kiyosi Wakibayashi during his life. He is one of Hansen's disease survivors who is an example of spiritual well-being (see **Figure 6**).
