Tito is a delightful young man. The world would call him disabled; he's had cerebral palsy since birth, the result of a bungled medical procedure at a hospital in Venice.
Tito was born to Anna and Diogo Mainardi, who is one of Brazil's best-known columnists as well as a novelist and screenwriter.
Tito is dauntless and spirited. He can walk 424 steps before he falls — but he always falls.
Diogo Mainardi has written a memoir of a family who begins to see in their son a new way to think about imperfection, expectation, exaltation and love. His new book is called The Fall: A Father's Memoir in 424 Steps. It's translated from Portuguese by Margaret Jull Costa.
Mainardi tells the story of his family's transformation using references to Shakespeare's Richard III, Tintoretto's paintings, James Joyce, Alfred Hitchcock's Vertigo, Neil Young, U-2 and Abbott and Costello. Tito has taught his father much about life, Mainardi tells NPR's Scott Simon.
"I was a pretentious prick, and after him, I was a better person," he says.
Interview Highlights
On the medical mistake that injured Tito
They tried to hurry up delivery, because it was a Saturday. Our obstetrician surely wanted to have her pasta still hot on the table, so she tried to hurry up everything and bungled everything. My son, he remained without any oxygen for a while, and that caused his cerebral palsy.
On how he and his wife felt on learning of his condition
We knew, right at the beginning, that he was almost dead. But after two weeks in an intensive care unit, he seemed to be all right. He survived everything, and we were relieved.
After six months we were told that he had cerebral palsy. We were not prepared. We felt fear, but that fear lasted for exactly a week. I was sitting on the sofa with my son on my lap, I was reading a newspaper. My wife was hurrying. She tripped, and when she fell down, Tito started laughing, and he laughed as an adult. It was an incredible, liberating laugh, and we started laughing with him. We knew we had a common vocabulary and common language with Tito, which was slapstick, which was comedy.
On Tito's 3-million-euro court settlement
[When] we learned that he had cerebral palsy, I got three jobs. I went from Venice, our hometown, to Brazil, in part to do his physical therapy and in part to earn money, to work. I had those three jobs just to try to accumulate some money to leave him. And then when we learned that he was a rich young boy, I was liberated from it all, so it was great. In the book I say that I knew, when we learned that he had won the case, I felt that I could die. And it's wonderful to be able to die. I could die.
On why it was important for Tito to walk up the 424 steps of the hospital in which he was born and harmed
When you have a disabled child, you feel that he must do more and he must be able to win against his own disability, and he has to achieve. When we completed those 424 steps inside the hospital where he was born, we didn't [feel that way] any more. Years had passed, we had calmed down, we were a happy family trying to cross a bridge. Not anymore to cross the world, walking. We set less ambitious goals.
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Transcript
SCOTT SIMON, HOST:
This is WEEKEND EDITION from NPR News. I'm Scott Simon.
Tito is a delightful young man. The world would call him disabled. He's had cerebral palsy since birth as the result of a bungled medical procedure at a hospital in Venice. Tito was born to Anna and Diago Mainardi, who's one of Brazil's best-known columnists and a novelist and screenwriter. Tito is dauntless and spirited. He can walk 424 steps before he falls. But he always falls. Well, don't we all? Diago Mainardi's written a memoir of a family who begins to see in their son a new way to think about imperfection, expectation, exaltation and love. His new book is called "The Fall: A Father's Memoir In 424 Steps." It's translated from Portuguese by Margaret Jull Costa.
And Diago Mainardi joins us from Venice. Thanks so much for being with us.
DIAGO MAINARDI: Very, very happy to be here.
SIMON: Well, we're happy to have you. To explain this up front, what was the medical mistake that injured Tito?
MAINARDI: Well, they tried to hurry up delivery because it was a Saturday. Our obstetrician surely wanted to have her pasta still hot on the table. So she tried to hurry up everything and bungled everything. My son, he remained without any oxygen for a while and that caused his cerebral palsy.
SIMON: Do you remember how you and your wife felt in those moments when you got that news?
MAINARDI: Well, we got the news six months afterwards. We knew right at the beginning that he was almost dead. But after two weeks in an intensive care unit, he seemed to be all right. He survived everything and we were relieved. And after six months, we were told that he had cerebral palsy. We were not prepared. We felt fear. But that fear lasted for exactly a week. I was sitting on the sofa with my son on my lap. I was reading a newspaper. My wife was hurrying up. She tripped and when she fell down, Tito started laughing. He laughed as an adult. And it was an incredible, really berating laugh. And we started laughing with him. And we knew we had a common vocabulary and a common language with Tito, which was slapstick, which was comedy.
SIMON: (Laughter). You received what sounds certainly like a sizable settlement from the Italian courts.
MAINARDI: Yes.
SIMON: More than 3 million euros.
MAINARDI: Yeah. Tito's rich.
SIMON: Well, I say this with respect and affection. How does it make you feel to get, you know, that large amount of money for him?
MAINARDI: Well, we didn't. Tito did. Ever since we've learned that he had cerebral palsy I got three jobs. I went from Venice, our hometown, to Brazil in part to do his physical therapy and in part to earn money to work. I had those three jobs just to try to accumulate some money to leave him. And then, when we've learned that he was a rich young boy, I was liberated from it all so it was great. In the book I say that I knew when we learned that we - he had won the cause, I felt that I could die. And it's wonderful to be able to die. I could die.
SIMON: There's the 424 steps in the title of the book and that we mentioned. Why was it important for you, for Tito, to walk up the steps of that hospital in which he had been born and harmed?
MAINARDI: When you have a disabled child, you feel that he must do more and he must be able to win against his own disability and he has to achieve. When we completed those 424 steps inside the hospital where he was born, we didn't anymore. I was - years had passed. We had calmed down. We were a happy family trying to cross a bridge, not anymore to cross the world, walking. We set less ambitious goals.
SIMON: Do you see what happened to Tito as something to be overcome or something...
MAINARDI: In the beginning. Right at the beginning, yes. He did some 379, I think, steps. And I wanted to take him to Mount Everest and repeat those 379 steps over there.
I was in this self-helper's frenzy, wanting to do things that he wasn't able to do. But then, it all passed. And resignation is a state of life, of a superior kind for us.
SIMON: Tito's brought a lot to your life, it sounds like.
MAINARDI: Oh, yes. He brought - I was a pretentious prick. And after him, I was a better person.
SIMON: Diago Mainardi, his new book - "The Fall: A Father's Memoir In 424 Steps." He joined us from Venice.
Thanks so much for being with us.
MAINARDI: I thank you. Transcript provided by NPR, Copyright NPR.
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