"Meaning of Changing Body: Narrative of Stevens-Johnson Syndrome"
last update: 20151224
Meaning of Changing Body: Narrative of Stevens-Johnson Syndrome
The first domestic surgery using osteo-odonto-keratopsthesis took place in 2003. The person who underwent
the surgery was a woman who became blind by the Stevens-Johnson syndrome. In this paper I report on an
interview I held with her about the process of her decision making. In addition, I consider how she gave
meaning to her changing body on the way to losing her eyesight.
I found that the meaning of her body was formed by her changing physical condition and by a consistent
reliance on an aspect of folk knowledge which says that as days pass, bodies get better. As her disease
progressed, most of her physical symptoms improved, but her eyesight deteriorated. This led to a split between
belief and doubt which she attempted to bridge by her personal narrative of her illness.
I think that this meaning was constructed from the incomplete explanations of the doctor and the patient's
reticence in demanding a full explanation from the doctor due to her desire to avoid recognizing her own state.
Key words: osteo-odonto-keratoprosthesis, Stevens-Johnson syndrome, qualitative research, losing eye sight, meaning