Friday, August 16, 2013

The Price of Polio: A life in a Hospital

This post summarizes the story published by the BBC at:

Paulo Henrique Machado was born in Brazil 45 years ago, in the middle of a big polio outbreak. His mother died when he was only two days old. Paulo was hospitalized as a baby, as part of a group of 11 children suffering from polio. Paulo describes growing up in the ward, moving around with a wheelchair and exploring his world – the hospital. His social circle were his ward fellows.
The doctors’ predictions for their future were grim: average life expectancy of children in the ward was estimated at 10 years.
The BBC story quotes Machado’s nursing assistant, Ligia Marcia Fizeto, as saying:   
It was very sad to see all those children, all lying there immobilised in their beds, or with very little movement.”  The children were all in iron lungs. Paulo still uses an artificial respirator constantly.

Six of these children beat the ten-year expectation. Paulo says: "There was me, Eliana, Pedrinho, Anderson, Claudia, Luciana and Tania. They were here for a good length of time too, more than 10 years."

But in the 1990s his friends deteriorated and died, one by one. Paulo says: "It was difficult ... Each loss was like a dismembering, you know, physical… like a mutilation," he says. "Now, there's just two of us left - me and Eliana."

Eliana is Eliana Zagui. Together, Eliana and Paulo offer each other companionship and support. They share a ward they personalized to their taste, with Eliana filling her side with dolls and books and Paulo filling his side with film memorabilia and two computers.
They argue constantly, and Paulo describes the relationship as sibling-like. Most of their time is spent in the hospital, though they have had trips outside, more recently, as technological advances make the equipment necessary for a trip less heavy, and allows for looser supervision.
When Paulo was 32, he and Eliana went to the beach together for the first time. They both describe the intense excitement and wonder of that visit, the first time they saw the sea. They got to feel the sand, to touch the water. Eliana says: "You enjoy these little moments, that many people take for granted. They don't stop to marvel like we do,"

Eliana is a published author, overcoming her disability by writing and painting with her mouth. Paulo has trained as a computer animator in the hospital.
Seeking to put their talents together, Paulo orchestrated an online campaign to finance a 3D animated series based on a book Eliana wrote. The series  will be called “The Adventures of Leca and her Friends” and will be based on Eliana’s real life. Says the BBC story:
“[Paulo] Machado wanted to portray his life with Zagui - also known as Leca - and their friends. "I wanted to make it attractive, not just colourful but full of the mischievous games that kids get up to. I think my characters are realistic, because they come from someone who is disabled. I know [exactly] what the difficulties they face are," he says.” 

Paulo and Eliana’s achievements are inspiring and amazing, especially in the face of the real limitations they overcame. But I cannot help feeling relieved that most of the world’s children are protected against the price polio extracted from these two extraordinary people and their friends. With luck, we can finish the polio eradication project, vaccinating children to prevent this horrible disease, and other children will not have to suffer similarly.   

Acknowledgements: I am grateful to Bradey Paschal and Xandy Gilmore for alerting me to this story, and to Xandy Gilmore and Alice Warning Wasney for comments on the draft. All errors are, of course, my own. 

1 comment:

  1. What moving story. Thank goodness for the polio vaccine.