Since I was seventeen I have had the feeling of living something sacred: my father’s last years, those of his illness. I feel the affection of all those who, now, write about his public facet, but what happened to us behind closed doors was more difficult and more beautiful, and we lived it alone, not in society.
From my father I treasure, in addition to his extreme affection, these last years together: starting to speak with gestures, having to guess the meaning of an eyebrow movement. Dementia did not erase our past memories: new and memorable images were born. The person he was before did not die: someone new, magical and levitating was born. No bond was broken – another father-daughter relationship was born, a role reversal with moments both tragic and hilarious. He learned to communicate without language. I learned to understand him without communication. He learned to let himself be taken care of and thus take care of me. All these unrepeatable moments belong to the sacred, and the sacred does not belong to language because language is sold, bought, made profitable and used in society. Those moments belong to literature.
At home, we were suddenly surrounded by a new family, that of those who helped us in this new life. It is they, too, who accompany us now in the life that opens before us, because I do not feel his death, either, as the end: I know that he would look at me and say Anem-hi xino-xano, som-hi piano piano, and we would remove from the road those who believe that a mute person no longer speaks, that a blind person cannot see, that someone with difficulties to understand does not understand, that a helpless body no longer has value.
Despite all these perceptions – against which we had to fight and which we will continue to undo – we lived with dignity, fear and joy until the end. We smoke cigarettes that were pencils. We dance waltzes with our necks. We talked to the tabs, I swear. I don’t remember a more difficult time with my father than that of his illness, but neither can I remember any more true, revealing and happy.