疾痛意义建构与生命代价承受——脊髓性肌萎缩症患者的叙事

Meaning Construction of Illness and the Hardship of Life:The Narratives of Patients with Spinal Muscular Atrophy

社会事实中的“常态”与“病态”被归属为非此即彼的二元对立关系,二者共存的现实矛盾加剧了病人的身心苦痛。从脊髓性肌萎缩症病人的疾痛叙事出发,探讨疾痛意义中的亲情建构和生命代价何其沉重。处在个体与社会交互中心的躯体承载着疾痛经验,亲情成为个体经验与现实世界首尾衔接的精神支柱,与异常的生物过程共同构成疾痛的意义世界。身心苦痛、经济重担和社会疏离合而为沉重的生命代价,对病人及其家庭重新嵌入社会结构的努力带来阻碍,是亟待释压的生命难承之重。

The"normality"and the"sickness"in the social facts are dichotomies,and the practical contradiction between them aggravates the patient's pain both physically and mentally.From the illness narratives of patients with spinal muscular atrophy,this paper discusses the relationship construction in the meaning of illness,and the high cost of life.The body at the center of individual and social interaction carries the experience of illness whilst affection serves as the spiritual supporter of the connection between individual experience and the real world,and constituted the meaning world of illness together with the abnormal biological processes.Physical and mental suffering,economic burdens and social alienation are the high cost of life that hindering the efforts of patients and their families to re-embed into social structures,reflecting the hardship that urgently calling for palliation.