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Published on 04/11/2016
Published on 11/19/2015
Woman Creates 'System' and Husband Writes Books by Blinking His Eyes
03/30/2017 - 13h39
COLLABORATION FOR FOLHA, IN BORACEIA (SP)
Having an ice cream cone, taking care of the orchids, fishing, kissing his son. Everyday activities that were commonly carried out by Dorivaldo Aparecido Fracaroli, 56, in Boraceia (316 kilometers from São Paulo), became impossible after he became sick.
Fracaroli has amyotrophic lateral sclerosis (ALS), a neurologic disease that progressively atrophies the muscles and leads to the loss of body movements - he uses a wheelchair and communicates only by blinking his eyes.
He breathes artificially and the food is fed directly to his stomach.
The physical obstacles did not stop Fracaroli from writing a book. "Ipê 'DO' Amarelo", with 112 pages, was written along with speech therapist Maria José de Oliveira, 52, who put the messages he sent blinking into paper. The story is similar to that in "The Diving Bell and the Butterfly" movie.
|Dorivaldo Aparecido Fracaroli|
In Brazil, a PhD thesis has already been written in the same way. The writing of the book began in 2014 and contains the author's memoirs, beginning with his childhood in the countryside, how he discovered his disease, its evolution and the process of accepting it.
His system of communication with the world was created by his wife, teacher Valéria Maria da Silva Fracaroli, 52, while he was still in the hospital's intensive care unit in 2012.
Dorivaldo had complications during a gastrostomy (to be fed directly to his stomach). Later he underwent a tracheostomy (a surgery for mechanical breathing) and lost the ability to speak. "I did not know if he was in pain, or what he wanted to say. I was desperate," says Valéria.
In a piece of paper, she wrote the alphabet divided in rows. She reads out the letters and Dorivaldo says yes with one blink and no with two.
A second book is already under way about the history of the city. Dorivaldo said he wanted to give an interview to Folha at home on Saturday, March 25. "The message that I want to leave is for people never to give up, everyone can do something to keep himself busy," he dictated to his wife letter by letter.
Translated by THOMAS MUELLO