This case study is about a Japanese woman who died at the age of 25, ten years after being diagnosed with Spinocerebellar Degeneration (Spinocerebellar Ataxia), who recorded her personal experience in a journal, titled One Liter of Tears; which was first published in Japan on February 25, 1986, two years before her death. Spinocerebellar degeneration (Spinocerebellar Ataxia) is a neurological disease that has no specific cause and no cure.

Sánchez Gómez (1896/2013, p. 11, own translation) describes in the prologue:

The disease took everything Aya had. She was not able to practice sports again, she stopped going to school because the use of a wheelchair did not allow her to follow a routine; she lost her friends; it was more difficult for her to write to the point of producing an unintelligible handwriting; she choked while eating or just by swallowing saliva; it became impossible for her to express what she felt, what she wanted to say, and in the end, she was not able to speak any more.

At the age of 15, due to the first manifestations of the disease such as loss of weight and balance, dizziness, changes in the way of walking and slow movements, she was diagnosed with this condition by means of a computed tomography scan at the Nagoya National University Hospital. She had increased difficulty walking, loss of muscle tone and strength of her arms and legs, difficulty eating due to choking; she was then hospitalized at around 16 years of age. Even so, she began rehabilitation, which consisted of coordination exercises, alternation of movements between the different members of the body and gait but experiencing headache and nausea after performing the treatment.

Subsequently she could no longer utter loud sounds, with no possibility of moving her arms and legs, with increased loss of muscle tone and strength, and difficulty writing; hence, the process of changing from a regular educational institution to an institution for people with functional diversity began. At Okayo Institute (Okazaki Institute for the Physically Handicapped of the Aichi Municipality), her leg mobility progressively decreased with burning pain in the right leg and knee; pain began on the inner side of her hip with involuntary movements in the left hand, pain on the left side of the chest, in the arms, joints and in the right buttock.

At around seventeen years of age, she presented greater impediment in the mobility of her hands, loss of strength in her legs and feet, becoming difficult to stand on her tiptoes; during the summer vacations there was an increase in the slowness of words pronunciation, with choking even when drinking; she had blown to the body due to falls, numbness in the Achilles heel making it difficult to move the legs forward and loss of strength of the abdominal muscles, although after taking a medication (they do not mention which one) it was easier for her to increase walking speed and the muscles of her right leg were relaxed; swallowing improved, although she still had difficulties and pain moving her legs, plus the limitation in the pronunciation of the syllables ba, wa and ma, because the muscles of her mouth presented a tic.

At the beginning of the new year, she could not pronounce the n sound anymore; only air came out of her mouth; she could no longer hold chopsticks to eat because the thumb of her right hand did not stretch enough, and the other fingers were stiff and did not move. The vision got blurred; there were changes in the shape of the right foot, dominance of the protruding big toe while the other toes laid flat; she experienced progressive loss of walking ability, of abdominal strength and lung capacity.

In a second hospital stay, the involuntary movement of the eyes to the sides became more visible. When she fixed her gaze to the right, her vision became blurred and divided the objects; if she set her gaze to the left, the level of distortion was reduced but the speech disorder continued to worsen. For the rehabilitation process, she began to use crutches, perform manual works, and practiced to repeatedly sit on a chair and stand up. She experienced greater hand stiffness, making it difficult for her to open and close them; she also experienced the presence of facial twitching. After graduating from the Okayo Institute, she had her third stay in the hospital and to improve her lung capacity she began to play the harmonica, but during rehabilitation she kept her back twisted and her upper body leaned forward in order to gain strength to be able to move a little more by herself; however, due to the degeneration of certain abilities, she began to eat shredded food.

At the end of the hospitalization process, she began by herself a rehabilitation process that involved standing up, raising her pelvis, turning, and sitting up ten times, obtaining support from one side to the other, raising her arms for five minutes, holding on to something for five minutes, inhale and exhale deeply three times. She knitted and performed manual activities to exercise her hands and recite picture books to work on speech, which, by late fall, caused a decline in energy and resistance.

When nineteen years old, a notable loss of sphincter control develops; there is a decrease in the time to carry out rehabilitation due to other types of activities of greater interest to her; by spring she could not stretch her Achilles tendon and it was difficult for her to sit down; her tongue movements became weaker, there was a complete loss of the ability to walk, numbness of the shoulder joints and inability to raise the right arm. As her condition progressed, more limitations developed in her ability to read, use a pencil, and see objects. Since she was admitted to the Akita hospital, she required permanent assistance for the different activities of daily life such as turning over in bed, going to the bathroom, dressing, undressing, eating, sitting, among others; pronunciation and reading became difficult and her writing was now totally illegible.

At the age of 20, Aya could no longer continue writing due to the total immobility of her body, so information covering the period between her 20-25 years of age is unknown; what could be found about the case are the perspectives or experiences during that time of her mother, her father, and her doctor, as referred to in the book, “When she realized that she would never be able to walk again, she lost her speech and, ten years after the diagnosis, on May 23, 1988, at 12:55 p.m. she died at the age of 25” (Sánchez Gómez, 1896/2013, p. 9, own translation).

Aya Kitou Diary – We worked on the Spanish version of Aya Kitou’s diary, with translation and publication by David Sánchez Gómez (Sánchez Gómez, 1896/2013). A transcription matrix was developed that allowed organizing the narration of the experiences of each point in time of Aya’s life cycle, based on categories such as: 1) experience, 2) internal resources, 3) sociocultural significance and 4) support networks, as well as a categorization matrix to locate the story in order to identify the relationship that this narrative had with the categories proposed. Thus, there is here a division by category (columns) and by narrative concept (rows).

The case study was defined as being of interest with the search for information on Spinocerebellar Ataxia, as this is a rare condition, classified as orphan disease and of low prevalence, in order to acknowledge the understandings that have been built around the phenomenon. The importance of the social impact of this disease was recognized, leading to broaden the perspective from psychology, generating disciplinary and interdisciplinary knowledge, addressing the need to build resilience around the disease. A matrix was built for the collection of information and subsequent interpretation through the categorization of said information. In the results construction phase, Aya Kitou’s experience was reflected in Tables 1, 3, 4, and 5, which allowed the discussion to begin, in which the postulates of the biopsychosocial model were reported.

A discourse analysis is carried out, in which language is considered a medium that expresses and participates in the nature of social reality (Boréus & Bergström, 2017; Núñez, 2019); working from a categorical analysis, based on a conceptual system, where the statements that should be presented are collected. The process starts from spheres such as linearity, meaning and understanding of the world (Arias & Alvarado, 2015; Núñez, 2019), thus addressing “disease and/or disability” and the “narrative construction of the experience”, concepts for reconstructions of reality around the experience of the disease, from the moments of the life cycle exposed in the diary. Those moments are in relation to the areas to achieve resilience according to Boris Cyrulnik’s biopsychosocial model: 1) internal resources, 2) sociocultural significance, and 3) social support systems.

1) Disease and/or disability: Within this category, all those narrations that emphasize the symptoms or changes due to the condition, which bear an impact on the life of the patient who suffers from the disease, were covered, based on the particularity that this disease progresses slowly and there is no known cure or final solution, hoping that these narratives influence the physical and psychological well-being of the patients.

2) Narrative construction of the experience: This category is intended to recreate the experience of chronic illness from the narrative, where we understand that in the relationship between person, family and institution, meanings emerge around the disease that generate forms of organization, thus addressing resilience as a psychological response to the experience.

3) Social support systems: awareness of the narrative structure can help health professionals to identify the patients whose experience of the disease is relevant at a social and scientific level based on the complexity involved.

Research with humans and human cases are necessary components for the development of the different areas of health. For this reason, this review that starts from the psychological discipline considers ethical principles, giving priority to the rights of people, ensuring a harmless action upon them, regardless of whether it is carried out in circumstances associated with healthcare practices or not. As John Rawls, the basic principles of social justice in the work with orphan diseases patients are equal opportunities and the principle of difference, understanding them from a simultaneous relational work, which implies freedom of access to attention in the different social organizations and positions or jobs, not as an imposition on the government, and positively recognize people with functional diversity (Gracia, 2016).

This study will be based in the first place, on the principles of responsibility and competence, ensuring the dignity of the case of interest (El Congreso de la República, 2010), decreed by Ley n° 1090 dated 2006, reported in the Psychologist Code of Ethics and Bioethics (El Congreso de la República, 2006), since there was no direct work with any individual. In addition, both the University and the Psychology program endorsed the completion of the degree work and its subsequent defense.