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Pain in disability

Clara
Language: English
Country: Italy
Typology: health care professionals
Text:
Clara, forty-two years old, lived in a residential community for disabled people with only eight other guests, for about seven years, since her mother died. She suffered from a quite serious mental impairment as a result of meningitis at the age of four years; she was affected by unsteadiness of gait, such as somewhat uncertain deambulation with tendency to lose her balance, and she communicated through some vocalizations that were not easy to interpret. She was serene and very affectionate, she got along well with the other guests, especially with one of them: Stefano, with whom she spent several hours a day. She was very cordial with operators, she was sometimes a bit obsessive, manic, but she never complained. In this community, a real theatrical company was created and she played an active and precise role in it; she participated in many shows and, two hours before going to make rehearsals, she had already crossed the door and, sitting on the steps, she waited for the bus to arrive. Six months ago, she had a vaginal haemorrhage, then, within a month, she had it twice. She was afraid because she did not understand, it was very difficult to convince her to make a gynaecological examination (she had never undergone one), not to mention TAC and NMR, that has radically changed her. She became irascible, intolerant, she completely isolated herself especially from the other guests, including Stefano. She did not understand what was happening to her, why she had to undergo those examinations. Within two months, everything fell apart: she started to suffer from sudden epileptic seizures and diffused bone pains, especially in the back. It was a uterine tumour, already with bone and brain metastases. How could we behave with Clara? What could we say? How could we explain to her? How could we begin treatment? How could we understand the symptoms? How much pain? How much fear? How long could she remain in that community, that is not a health community (there are no nurses, and there is only the national health doctor.)? How could we tell her to move to another place, far from the community that, by then, had become her house, and to separate from those people, who were her only reference point? The only way was that operators should stand continuously by her, so that she did not feel lonely, and that she should be regarded as a person who suffers, not as a disabled person who suffers, precisely because she is disabled, even though she is not aware of it. This way, Clara spent the last months of her life with serenity and living wonderful emotions. The greatest pain appeared to be less painful and more bearable, near people who loved her and tried to make her appreciate life until the end (the day before dying, in the morning, her mind was still a bit fresh and all the guests and operators went to see her and they put together a theatrical show dedicated to her, with the music she liked most; Clara was smiling quietly and with her hands she made gestures as if she was going to join in…).


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