Paulo Henrique Machado has lived almost his
entire life in hospital. As a baby he suffered infantile paralysis brought on
by polio, and he is still hooked up to an artificial respirator 24 hours a day.
But despite this, he has trained as a computer animator and is now creating a
television series about his life.
The Brazilian’s first memories are of
exploring the hospital he has lived in for 45 years by wheelchair. “I explored
up and down the corridors, going into the rooms of other children that were
here that is how I discovered my ‘universe’,” he says.
“For me, playing football or with normal
toys wasn’t an option, so it was more about using my imagination.” Machado’s
mother died when he was two days old, and as a baby he contracted polio, the
result of one of the last big outbreaks of the disease in Brazil.
Ligia Marcia Fizeto, Machado’s nursing
assistant, began working in the hospital - Sao Paulo’s Clinicas shortly after
he arrived. “It was very sad to see all those children, all lying there
immobilised in their beds, or with very little movement,” she says.
In the 1970s, children with polio were
encased in a “torpedo,” a body-encasing iron lung and doctors at the hospital
gave grim assessments of the children’s prospects. Few in the “polio ward” were
expected to reach adolescence, their life expectancy was just 10 years.
With very limited mobility, Machado’s world
formed around the friends he made on the ward. “There was me, Eliana, Pedrinho,
Anderson, Claudia, Luciana and Tania. They were here for a good length of time
too, more than 10 years,” he said.
With the innocence of childhood, he never
imagined that they would be parted. But by 1992, some of the children had begun
to deteriorate, one by one, his friends began to die.
“It was difficult,” says Machado. “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.”
Machado and Zagui together in hospital
Machado and Zagui (L) have grown up together
Doctors don’t quite understand why the pair
outlived their peers by so long, but now every day in the ward, Machado wakes
up with his bed facing that of his remaining friend and lifelong neighbour,
Eliana Zagui. He said their relationship is crucial. “Some people think we are
like husband and wife, but we are more like brother and sister,” he said.
“Every day, when I wake up I have the
certainty that my strength is over there - Eliana. And it’s reciprocated. I
trust her and she trusts me.”
Despite this the two fight virtually every
day, Machado said with a laugh. “I think that’s normal between brother and
sisters or a couple. But it’s not an argument where one side feels offended,
you end up reflecting and think, ‘OK, I forgive you’,” he said.
The danger of infection means that they
have to live in hospital. Trips outside are rare but memorable, says Machado,
who estimates that he has been outside of the hospital at least 50 times in
total, more in recent years. Advances in medical technology mean that going out
involves less heavy equipment and less medical supervision and as they have got
older, Zagui and Machado are prepared to take more risks.
“There are some trips which stand out, like
seeing the beach for the first time when I was 32. “I opened the car door and saw
the sea and thought ‘Wow! What is this!” he said.
It was Eliana Zagui’s first time to visit
the beach too. “I knew the beach only from photos, films, postcards, stories
from other people, so I had built up an image in my mind of what the sea and
the beach would be like,” she recalls. “They took us out of the vehicles, Paulo
was in a wheelchair and they pushed my bed onto the sand.
She remembers feeling the sea water with
her hands for the first time. “You enjoy these little moments, that many people
take for granted. They don’t stop to marvel like we do,” she said. In the ward,
Zagui fills her time writing. She is a published author and painting using her
mouth.
Because the pair have been living in the
hospital for so long, they are allowed to decorate their room with their own
possessions. Zagui’s side is filled with dolls and books and being a confirmed
cinephile, Machado’s is full of film memorabilia. He also has two powerful
computers, as he has been able to train in hospital as a computer animator.
In May this year he reached his target -
$65,000 (£44,000) in an online campaign to raise finance for a 3D animated film
series called The Adventures of Leca and her Friends, based on a book that
Zagui wrote which he will direct.
The animation will feature a stop-motion
technique, similar to that used by Aardman animations in films such as Wallace
and Gromit. 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 said.
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