When Gioia was young, she got wounded much more easily than other children did. Our parents tried to understand for years what she had, but no one could give them a diagnosis. They discovered just when Gioia was seven years old, that she was affected by Ehlers Danlos syndrome.
EDS is a rare connective tissue disorder, due to a defect in the synthesis of collagen. It involves mostly the skin, which is hyper-elastic, fragile, tending to break and it is difficult to heal. The average incidence is estimated at 1 in 20,000. At the moment there is still no effective treatment for any of the types (Ehlers Danlos is divided into 6 different types), that can act on the basis of the problem. All you can do is just live your life, paying much more attention to the world around you.
Gioia has lived in and out of hospitals for years. Since her diagnosis, we have constantly had to fight with doctors, trying to explain to them what this rare syndrome was and what the dangers were. It is not well known and often people who are affected by it, are considered hypochondriacs. Despite the initial difficulty in understanding what she had, Gioia was very lucky since there are people who discover they have EDS when they are 50 years old or when pregnant, or maybe never.
From the beginning of this project, I had to deal with a certainty: the “sick” person is not able to describe the pain experienced. Le Breton writes: “the expressed pain, is never the pain you actually feel” and gives an exemple: “To know how much it hurts the fire, you have to burn youself. But it remains the inability to know how great is the suffering of another who burns.” That is why chronic pain produces new forms of expressive imagination, focusing on the metaphor, which helps to express the suffering to the rest of the world. I really connect these words with Gioia’s personality and creativity.
Working together with Gioia has been a great challenge for me, enabling me to really watch and listen her and to understand better how she relates to her body and with the outside world.
