Paulo Henrique Machado has lived most his 43 years in a Sao Paulo hospital bed
Machado contracted polio as an infant; his mother died soon after his birth
Machado and his roommate, Eliana Zagui, have become inspirations to others with paralysis
Paulo Henrique Machado shares pictures of some of his most cherished memories: the first time he saw the beach, a Formula One race and a party from his childhood when all his friends dressed as clowns.
And yet he has lived the last 43 years – almost his entire life – in Brazil’s biggest hospital.
As an infant, he contracted polio and was left paralyzed from the waist down. He breathes with the help of a respirator.
It was the 1970s, before vaccines eradicated polio in Brazil, and Machado was sent to live in the polio ward with eight other children.
“It was a wonderful time. I’ll never forget it,” he said during a recent interview from his hospital bed. “Even though most of our friends are no longer with us, I never stopped dreaming about them.”
His mother died two days after he was born and the rest of Machado’s family soon stopped visiting.
He points to a black and white picture of a boy in a pointy hat and clown makeup curled up in a wheelchair.
“That’s Pedro,” he says. “Back then, it was him and me, we were very close. He was my friend.”
Over the years many of the children died, including Pedro.
“It was December 26, the day after Christmas,” he says. “Everything that I planned with my friend, life didn’t have the same meaning. But it made me stronger.”
The children were given little chance of surviving past the age of 10, but two people did: Machado and his lifelong friend and roommate Eliana Zagui.
They still live together in a room tucked inside the Intensive Care Unit of Sao Paulo’s Clinicas Hospital.
“We’re like brother and sister and we look after each other,” Machado says.
Zagui suffered paralysis caused by polio when she was a baby. She has lived in the hospital for 38 years.
“I’ve been here since I was 1 year and 9 months old,” she tells us. “I learned to write, to paint, to use a cell phone, a computer, things I like.”
They were both encouraged to push beyond their physical limitations.
Zagui recently wrote a book about her experience growing up in the hospital.
She also discovered painting, patiently dabbing at the canvas with a brush taped to a tongue depressor.
The wear and tear on her teeth meant she had to limit herself but she hasn’t stopped.
Machado trained as a computer animator and wrote a screenplay for an animated series. With the help of crowd-funding and a group of animators, the series is coming to life.
“They’re inspirational,” says Dr. Nuno Da Silva, a physician who has worked in the ICU since 1988.
He says that when they have patients who have been paralyzed in car accidents they take them to spend some time with Machado and Zagui.
“They’re examples to show it isn’t the end of the world,” he says.
Still, they both wish they could visit, or even live, in the outside world.
“When I turned 10, the hospital tried to convince my relatives to take me in,” says Machado. “But that’s not what happened. So we stayed here.”
Machado’s biggest passions are movies and videogames, opportunities to escape his own world.
“I like to live outside my reality,” he says. “To get out of reality I play games, because in the games I can go where I want without suffering any pain.”
There was a decade of freedom when Machado used an electric wheelchair to come and go with relative ease.
But then post-polio syndrome set in, causing gradual weakening in muscles that were affected by the original infection.
It became impossible for him to straighten his legs enough to sit in a wheelchair – so travel is now only done lying down in hospital beds.
But that hasn’t stopped him. On one of our visits he invites us to join him on an outing to a big videogame convention.
Moving around is complicated – he travels in an ambulance with medical technicians paid for by donations.
Another complication: the respirator. Machado doesn’t need it 24 hours, but he feels more secure,having it just in case.
But once inside the videogame convention, we enter Machado’s world.
He laughs with excitement as a group of medical technicians and friends roll him around on a mobile hospital bed.
Then he tries his hand at a few games.
“You don’t pay attention to anything else around you,” he says. “It’s great, you just want to discover more.”
For a day, at least, the tubes, the respirator, the hospital bed, they all fade into the background, and Machado becomes invincible.