Per
DEBORAH
COLKER
On August 21, 2009, my first grandchild, Theo, was born.
He was born with a genetic mutation, a rare disease I had never heard of: epidermolysis bullosa.
Gradually, we began to realize the cruelty of the disease and that it has no cure. My reaction was one of indignation, incomprehension, revolt. Indignation led me to seek science and fight discrimination. I learned that my greatest enemy is ignorance, and my greatest partner is genetic and scientific research.
In this adventure I found hope, intelligence and the certainty that a country that does not invest in science does not invest in its present or its future. A nation without science is a nation without transformation. At the same time, I felt how revolting human ignorance is: prejudice, false normality, lack of compassion, intolerance. It was necessary to accept, learn to accept and approach the pain of the other.
In this crossing I found families, children, true heroes. I was realizing the strength within the fragility. The cure and the disease were together, one inside the other. I was feeding on the wisdom of those who lived on the margins, on the thread of life.
We experimented with mesenchymal cell research, we ran after CRISPR, we formed groups to find ointments, creams, helping each other. We meet scientists, doctors, thinkers, religious people. In 2017, we premiered the show Cão sem plumas, based on the poem by João Cabral de Melo Neto. The words of Cabral expressed my indignation, the forcefulness of this poem was real and thick. They helped me build a human-animal body – the tragedy and richness of these words in the mud skin coming from underground.
I began to realize that I needed to find the cure. The cure for what has no cure. I already knew that I needed to bridge the gap between faith and science. Between accepting and fighting, between shutting up and screaming, between waiting and acting.
In early 2018, Stephen Hawking died, and then I understood what the cure for the incurable was. Hawking suffered from ALS (Amyotrophic Lateral Sclerosis), an extremely cruel disease. When diagnosed, doctors gave him three more years to live. He lived fifty more, creatives.
I started looking for old stories. Nilton Bonder, as a good rabbi, is a great storyteller. We read many beautiful. But I ended up being fascinated by one told by the Bahian choreographer Zebrinha. It is the story of Obaluaê, orixá of illness and healing, of rejection and adoption. The wounds turning into popcorn is too beautiful.
From the beginning of the rehearsals, João Elias told me to read the psalms of David associated with Healing.
I understood the importance of silence in healing.
Jesus was the man who brought love to our civilization, the man who symbolized healing.
Uniting silence, Jesus' walking on water and the psalms would be transcendence in movement.
Only Leonard Cohen could have a song that acknowledges death. The poet of life and death. Be ready for the great cure: “Hineni, here I am, my Lord”.
I realized that faith and science go together in all cultures and I found my characters in this saga.
Obaluaê, Leonard Cohen, Stephen Hawking, Indians, Africans, Jews, Arabs, rare and special. The stories, the songs, the poetry, the science and the gratitude of being able to make me a better person.
Healing isn't about Theo, it's about what Theo's birth did to me.
I needed to end the show with my antidote to cruelty: never lose joy. And thank you for being part of this great party.
