The Price of Polio: A life in a Hospital

This post summarizes the story published by the BBC at: http://www.bbc.co.uk/news/magazine-23364127
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. 
Share

One thought on “The Price of Polio: A life in a Hospital

Leave a Reply

Your email address will not be published. Required fields are marked *