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In the years and decades following the end of the Revolutionary War, dozens of ordinary Americans engaged in different ways the burgeoning genre of memoir writing. In fragments and half-told stories, as well as whole-of-life biographies, ordinary colonists offered a rich and inclusive history of the era. In their varied forms and diverse styles, they were among the earliest group of Americans to try and explain themselves, and often emphasized themes of betrayal, deprivation, divisions, violence, disease, and chaos. In doing so, these writers undermined or complicated more well-known narratives about the Revolutionary era that dominated the mainstream print culture and subsequent histories of the Revolution. In that respect, those who wrote about their Revolutionary era experiences were also engaging in a Revolutionary act. Collectively and over many decades, memoir writers drew on and enriched a new medium of storytelling that ultimately reveals a more complicated founding story of a nation.
The notion of spirituality/religious belief is recognized internationally as a domain within end-of-life care and is important in patients' and carers' quality-of-life. When faced with incurable illness, patients often become more philosophical about their life; many seek comfort in spiritual or religious philosophies. Our intention was to understand how personal spirituality and religious faith might help those living with amyotrophic lateral sclerosis/motor neuron disease (ALS/MND) cope with their impending death.
Method:
Unsolicited narratives (internet and print-published) written by individuals diagnosed with the terminal condition of ALS/MND were analyzed thematically. Narratives from 161 individuals diagnosed with ALS/MND written over a period of 37 years (from 1968 to 2005) were included.
Results:
Our findings reveal that religious faith sustains and helps people to avoid despair, and personal spirituality helps them make sense of what is happening to them.
Significance of Results:
The use of personal narratives by people with ALS/MND has provided a vehicle for sharing their deepest spiritual and religious thoughts with others. The place of spirituality and religious faith within ALS/MND care should not be underestimated. Assessment of religious or spiritual needs should become a routine part of practice and is the responsibility of all members of the multidisciplinary team.
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