by

DEBORAH

COLKER

​

On the 21st of August of 2009, my first grandson Theo was born.

He was born with a genetic mutation, a rare disease that I had never heard of: epidermolysis bullosa.

We began to realize the cruelty of the disease and that it is incurable. My reaction was one of indignation, incomprehension, and anger. The indignation led me to turn to science and to fight discrimination. I learned that my greatest enemy is ignorance, and my greatest partner is the genetic and scientific research.

In this adventure I have found hope, intelligence, and the certainty that a country that does not invest in science does not invest in its present or in its future. A nation without science is a nation without transformation. Alongside this, I've felt how human ignorance is revolting: prejudice, the false morality, the lack of compassion, the intolerance. There was a need to accept, to learn to accept and reach out to the other's pain.

In this path I have met families and children, true heroes. I began to realize the strength within fragility. The cure and the disease were together, one within the other. I fed off the wisdom of those living in the margins, in the threshold of life.

We took part in clinical trials with mesenchymal cells, chased after CRISPR, created groups to find ointments, creams, each helping the other. We met scientists, doctors, religious thinkers. In 2017, we premiered the show Dog Without Feathers (Cão Sem Plumas), based on the poem by João Cabral de Melo Neto. Cabral's words expressed my indignation, the forcefulness of this poem was real and thick. It helped me build a body-man-animal – the tragedy and the wealth of these words in the skin of mud coming from beneath the ground.

I started to see that I needed to find the cure. The cure for what cannot be cured. I already knew I needed to build a bridge between faith a science. Between accepting and fighting, between being silent and screaming, between waiting and acting.

In early 2018, Stephen Hawking died, and then I understood the cure for what cannot be cured. Hawking suffered from ALS (Amyotrophic Lateral Sclerosis), an extremely cruel disease. When he was diagnosed, doctors gave him only three more years to live. He lived over fifty, creative years.

I began looking for ancient stories. Nilton Bonder, as a good rabi, is a great storyteller. We read many beautiful ones. But I ended up fascinated by one told by a choreographer from Bahia, Zebrinha. It is the story of Obaluaê, orixá* of disease and cure, of rejection and acceptance.

The wounds turning into popcorn, as in the legend, is too beautiful.

Early on in 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 symbolizes the cure.

Uniting the silence, Jesus' walking on water and the psalms would be the transcendence in the movement.

Only Leonard Cohen could have a song that recognizes death. The poet of life and death. Being ready for the bigger cure: “Hineni, here I am, my Lord”.

I realized that faith and science walk together in all cultures and found my characters in this saga.

Obaluaê, Leonard Cohen, Stephen Hawking, indigenous, Africans, Jews, Arabs, rare and special. The stories, the songs, the poetry, science, and the gratitude for being able to become a better person.

Cure is not about Theo, but about what the birth of Theo caused in me.

I needed to finish the show as my antidote to cruelty: never losing joy. And giving thanks for being able to take part in this great party.

*Deities revered by the Yoruba in certain areas of Africa, brought to Brazil by enslaved Peoples.