Da infinidade do tempo à finitude da vida: o vir-a-ser adolescente com Distrofia Muscular de Duchenne

Abstract

Duchenne Muscular Dystrophy is a rare, neuromuscular, degenerative pathology characterized by loss of muscle tone. The person with Duchenne tends to gradually lose his or her ability to move and die from heart and respiratory muscle failure. The individual with Duchenne experiences different breakdown processes and crises, and it is precisely during adolescence that the symptoms caused by Duchenne worsen. Considering the many challenges faced by people who experience this phenomenon, this thesis is based on the Semiotic-Cultural Psychology to assume the following research problem: how do the processes of semiotic regulation occur in the course of becoming an adolescent with Duchenne? As a general objective, this work sought to understand the dynamics of semiotic regulation experienced in the process of becoming an adolescent with Duchenne. The specific objectives were: a) to analyze the dynamics of continuity and discontinuity in the space-time relationship in the process of becoming an adolescent with Duchenne; b) to identify and analyze the relation of semiotic mediation linked to the perception of self and of the other in the crossing of space-time experience through the process of becoming an adolescent with Duchenne; c) to analyze the interaction of the teenager with Duchenne with the use of cultural instruments and artifacts; d) to discuss and analyze the elaboration of the imaginative process of the teenager when reflecting on his past experiences and on his future expectations. Two adolescents with Duchenne Muscular Dystrophy living in the city of Lauro de Freitas/BA and in Salvador/Bahia participated in the research. One of the adolescents studied in a public municipal institution and the other in a private institution. As instruments of data collection, a narrative interview was carried out with the Individual Timeline (Lopez, 2008) as a resource for the evocation strategy. For data collection, three meetings were held and data analysis was carried out by thematic axes. The results indicated that the process of becoming an adolescent with Duchenne is crossed by the space-time experience. A common point between two adolescents with Duchenne who participated in the research were memories of frequent falls, feeling of muscle fatigue, and the moment of identification of the clinical diagnosis, aspects that constituted themselves as significant events for the understanding of their respective processes of rupture and transition. In addition, there was a prospection around a future that was constituted in the hope of finding a cure for Duchenne. Despite the similarities, each life trajectory was experienced in an idiosyncratic, dynamic way and were constituted from a network of signs, meanings, and cultural artifacts shared in their sociocultural context. We conclude, the importance of understanding the ruptures and developmental transitions experienced by adolescents with Duchenne for the expansion of public policies aimed at this public.