Per
DEBORAH
COLKER
The 21 of August of 2009 was born my first nieto, Theo.
It was born with a genetic mutation, a rare disease, about which I had never heard of talking about: the epidermolysis bullosa.
Poco by poco, we say cuenta de la crueldad de la enfermedad y de que no tiene cura. My reaction was one of indignation, of incomprehension, of revolution. The indignation led me to seek science and fight against discrimination. I learned that my great enemy is ignorance, and my greatest partner in genetic and scientific research.
In this adventure I find hope, intelligence and the certainty that a country that does not invert science does not invest in its present and in its future. A nation without science is a nation without transformation. At the same time, I felt the repugnance of human ignorance: the harm, the false normality, the lack of compassion, the intolerance. It was necessary to accept, to learn to accept and to approach the pain of others.
In this crossing I met families, children, true heroes. I was aware of the strength that there is in the fragility. The cure and the illness were together, one inside the other. I nourished myself with the wisdom of those who lived on the margins, on the edge of life.
We experimented with the investigation of mesenchymal cells, we ran after CRISPR, three groups to find ointments, creams, help for others. We know scientists, doctors, thinkers and religious people. In 2017, we premiered the show Perro sin plumas (“Dog without feathers”), based on the poem by João Cabral de Melo Neto. Cabral's words expressed my indignation, the forcefulness of this poem was real and heavy. They helped me to build a body-hombre-bestia: the tragedy and the wealth of these words in the clay pit of the subsuelo.
He told me that he had to find a cure. The cure for what is not cured. I already knew that I had to tend a bridge between the faith and the science. Between accepting and fighting, between calling and shouting, between waiting and acting.
At the beginning of 2018, Stephen Hawking died, and then I understood what was the cure for the incurable. Hawking suffered from ALS (Amyotrophic Lateral Sclerosis), an extremely cruel disease. When he was diagnosed, the doctors had three bad years of life. He lived another fifty years, in a creative way.
Empecé looking for viejas stories. Nilton Bonder, as a good rabbi, is a great narrator. We read many beautiful stories. But I ended up fascinated by one told by the Bahian choreographer Zebrinha. It is the history of Obaluaê, orisha* of the illness and the cure, of the rejection and the adoption.
The heridas that transform into palomites are too beautiful.
Since the beginning of the essays, João Elias told me that he read the psalms of David associated with the curación.
I understood the importance of silence in the curation.
Jesus was the man who wore love to our civilization, the man who was the symbol of healing.
To unite the silence, the walk of Jesus on the waters and the psalms would be the transcendence in movement.
Only Leonard Cohen could have a song that recognized the death. The poet of life and death. Be prepared for the great curación: "Hineni, aquí estoy, mi Señor".
It tells me that faith and science go together in all cultures and I kept looking for my characters in this saga.
Obaluaê, Leonard Cohen, Stephen Hawking, the indigenous people, the Africans, the Jews, the Arabs, the rare and the special. The stories, the songs, the poetry, the science and the gratitude of being able to convert into a better person.
The curación does not have to see with Theo, but with what the birth of Theo provoked in me.
It was necessary to finish the program with my antidote against cruelty: never lose joy. And thank you for being part of this grand fiesta.
* The orishas are deities of the Yoruba, religion of African origin betrayed to Brazil by slaves.
