Mia

I still look at my Venus in the way a sailor would look at a siren. Fascinated and frightened. I created you, but I can’t control the impact you might have. You are other than me and at the same time you are the purest essence of how me and myasthenia are together.
I didn’t think I would be able to create beauty through making an object out of my illness. I really hate what it represents, the brain with the brakes on, the heavy limbs, the perennial balance between things to do and things not to do, to save energy. But my hatred didn’t create ugliness.
The ideas were always very clear, the “impediments” of the illness well defined. I was very focused on Her, the invisible illness. Then a lightning flash, my Venus had to have a real scar that I have: my tattoo, my voluntary scar. Now my Venus looks more like me, she is not just the illness. I am not just the illness. Then the choice of colour for the skirt, thousands of layers of paint so that everything could be perfectly smooth giving a sense of rigidity.
“Do you see what she is? Elegance,” they said to me. A real insult. I had committed to throwing on her everything that had hurt me, stopped me, changed me because of the myasthenia. And everyone saw her as beautiful, elegant, regal.