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I never worshipped God. I never worshipped Man. However, I began to worship Tito. I began to worship domestic life. My gospel is an electricity bill. My temple is a greengrocer’s shop.
Tito is Everything. A tomato is Everything.
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The Palazzo Dario and the Palazzo Corner have spent five hundred years debating the great themes of humanity, shouting their arguments to each other across the Grand Canal.
If the Palazzo Dario was Socrates, the Palazzo Corner was Meletus. If the Palazzo Dario was Dante Alighieri, the Palazzo Corner was Farinata degli Uberti. If the Palazzo Dario was Don Quixote, the Palazzo Corner was Sancho Panza. If the Palazzo Dario was Naphta, the Palazzo Corner was Settembrini. If the Palazzo Dario was Lou Costello, the Palazzo Corner was Bud Abbott.
Only Venice could give me this.
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After designing the Palazzo Corner, Jacopo Sansovino was commissioned to design the reading room of the Biblioteca Marciana — St. Mark’s Library.
Pride of Science and Pride of State revealed themselves in his imposing vaulted ceiling in the Roman style.
In 1545, the ceiling collapsed.
That’s right: The Fall.
Jacopo Sansovino was arrested and ordered to rebuild the reading room in the Biblioteca Marciana at his own expense. Jacopo Sansovino was forced to replace the imposing Roman-style vaulted ceiling with a flat ceiling.
I am the flat ceiling of cerebral palsy.
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I moved to Venice in 1987. I was twenty-four years old.
For me, the best thing about Venice was its regressive nature. For me, the best thing about Venice was its nonconformist reactionaryism.
Living there was like living in an Amish town. I saw Venice as an Amish town for intellectuals. Its lofty irrationality is in sharp contrast to the enlightened popularism of my time. Its splendidly anachronistic nature makes a mockery of any kind of haughty progressivism.
A child from an Amish village who had not been allowed to be vaccinated could die of measles. In Venice, as I discovered some years later, a child could die at birth.
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When I moved to Venice, I was writing my first novel.
After writing my first novel, I wrote my second novel. After writing my second novel, I wrote my third novel. After writing my third novel, I wrote my fourth novel.
When Tito was born, I was writing my fifth novel.
That was how I saw my future: living in Venice and jumping from novel to novel.
Tito’s birth changed all that.
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The first months of Tito’s life were just like any other baby’s.
He breastfed. He was taken for walks. He slept.
Every six weeks, we took him to the neurology department in Padua Hospital.
The doctors tested his reflexes and measured the size of his brain.
The results were always perfectly normal. The doctors assumed that Tito had escaped unharmed from his bungled birth.
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In the previous image: a perfectly normal Tito.
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Just before he was six months old, Tito went for another examination at Padua Hospital.
His neurologist lay him face down on the stretcher. At that moment, he should have rolled over onto his back. Instead, he merely waved his little arms about, but — like a turtle — he was unable to turn over.
That was the first sign that he had cerebral palsy.
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I had found out that my wife was pregnant exactly one year before.
I wrote about it on 23 February 2000 in my column in the magazine Veja.
I started by saying that, up until then, my rejection of fatherhood had been one of the rare, unquestioned certainties of my life. I went on to say that my wish — and I quote word for word — was to have “a turtle child, and whenever he became too agitated, I would just have to roll him onto his back and he would lie there, silently waving his little arms.”
I got my turtle child.
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Some days after the examination at Padua Hospital, we received the results through the post. According to the neurologist, Tito had suffered “damage to the extrapyramidal system.”
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I know how to read.
Reading is my job. I think by reading. I feel by reading. When we received the result of the examination at Padua Hospital, I read all about the extrapyramidal system. Nothing I read prepared me for what we were about to discover.
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Now I know what Tito has.
According to the neurologists who have examined him over the last few years, the damage to his thalamus was caused by his bungled birth. The thalamus is part of the extrapyramidal system. The damage is infinitesimal, so much so that no machine has ever yet managed to detect it. But it’s serious enough to affect all his movements.
Tito can’t walk, pick things up or talk normally.
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After examining Tito, the neurologist at Padua Hospital sent him to a physiotherapist at Venice Hospital.
During the weeks that followed, the physiotherapist put him through a series of tests.
It was only when all the tests were over that — with a feeling of fear and panic — I first heard the term which, from that moment on, would come to dominate my life.
Tito had cerebral palsy.
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The fear lasted a week.
Then it passed.
The reason why it took only a week for the fear to pass was a fall.
Tito was sitting on my lap. I was sitting on the sofa in the living room reading the newspaper. My wife, who was rushing about, caught her foot on the rug and fell flat on her face in front of us. When Tito saw her fall, he laughed out loud. We both pretended to fall over. And he laughed and laughed and laughed. And we laughed with him.
Tito’s cerebral palsy immediately became more familiar. Slapstick was a language we all understood.
Tito falls. My wife falls. I fall.
What unites us — what will always unite us — is the fall.
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(Picture Credit 1.11)
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In the previous image: Abbott and Costello Go to Mars.
On a voyage into outer space, Lou Costello gets his astronaut’s boot caught in a storm drain and falls over when he wrenches it free.
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Francesca Martinez is a comedian.
She has cerebral palsy. All her performances revolve around that topic.
According to her, the term cerebral palsy can only have been invented to induce “fear and panic.” That is why she likes to be described as a “wobbly” person. She is always wobbly, always about to fall.
Francesca Martinez’s humor — like Lou Costello’s — takes its inspiration from her falls.
Cerebral palsy is her astronaut boot caught in a storm drain.
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Francesca Martinez told the Daily Mail what had happened to her.
Her cerebral palsy, like Tito’s, was caused by a medical error. Her mother was left unattended for some hours because “being a Sunday there were fewer hospital staff on duty.” Francesca remained in the womb and was left without oxygen for seven minutes.
Cerebral palsy, she explains, “occurs when part of the brain fails to work. It affects one child in five hundred. Each case is unique, but usually people’s muscle control and mobility are affected.”
The best way to describe how cerebral palsy affects her is that she appears to be “slightly drunk.” Her speech is slurred and her balance wobbly.
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Two weeks after learning that Tito had cerebral palsy, I wrote about it in my column in Veja:
My seven-month-old son has been diagnosed with cerebral palsy. From the outside, that piece of news might seem utterly desperate. From the inside, though, it’s different. It was as if they had told me my son was Bulgarian. If I discovered that my son was Bulgarian, the fi
rst thing I would do would be to consult a book to find out more about Bulgaria: gross national product, principal rivers, mineral wealth, etc. And that is what I did with cerebral palsy.
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After saying that cerebral palsy was a term that struck fear into the heart and that, for the first time in my life, I belonged to a minority, I ended the column in this shamelessly sentimental way:
I consider myself to be a humorous writer. For me, there is nothing funnier than frustrated expectations.
Frustrated expectations about social progress.
Frustrated expectations about scientific discoveries.
Frustrated expectations about the power of love.
I have always worked from that anti-enlightenment viewpoint. Now I’ve changed. I now believe in the power of love. Love for a little Bulgarian.
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From that moment on, Tito’s cerebral palsy became a recurrent theme in my columns.
Over a period of ten years, I devoted eight columns to him.
If, as Francesca Martinez estimated, cerebral palsy affects, on average, 1 child in 500, I published a column on the subject, on average, every 500 days.
Cerebral palsy affected the lives of my readers as often as it affects life in general.
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In an article in the Daily Telegraph, Francesca Martinez stated: “That’s the huge secret about disability — anyone with experience of it knows that a disabled person is just a person they love.”
In my first article about Tito, that was the only “huge secret” I had to reveal.
Astonishingly, for me and for Anna, Tito’s cerebral palsy was never a cause for sorrow. Astonishingly, for me and for Anna, Tito’s cerebral palsy never seemed a burden.
At seven months, Tito was simply a person we loved.
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In mid-2001, we took Tito to see a neurologist in New York.
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In the previous image: Tito and me in New York.
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In New York, I became Tito’s first mode of transport.
He would point left and I would go left. He would point right and I would go right. He would point at his grandmother and I would hand him over to his grandmother.
Just like Josef Mengele, Tito would choose my fate by sending me off to the right or to the left.
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The New York neurologist was very encouraging.
After doing a few tests, he predicted that, in two years’ time, Tito would be speaking normally. He also predicted that, in four years’ time, Tito would be walking on his own.
Both predictions proved false.
Tito never spoke normally. He never walked on his own.
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Christy Brown had cerebral palsy.
During the first few months of his life, his parents took him to various neurologists in Dublin.
They all said that Christy Brown would remain forever in a state of “torpor,” because he was an “idiot,” “mentally defective,” a “hopeless case” and “beyond cure.”
In his autobiography, My Left Foot, Christy Brown described how he was able to overcome the worst prognoses, finding a way of typing and painting with the big toe of his left foot.
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Like Christy Brown’s parents, Anna and I learned to ignore all the doctors’ stupid prognoses, whether positive or negative. Like Christy Brown’s parents, Anna and I learned to celebrate each step taken by Tito, however wobbly.
After a certain point, we even learned to celebrate his falls. In the early years, Tito would always hurt himself when he fell. Over time, he developed new ways of breaking his falls.
Knowing how to fall is much more valuable than knowing how to walk.
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The Irish band The Pogues recorded a song about Christy Brown.
In the opening chords, the electric guitar is accompanied by the sound of a typewriter, going tap-tap-tap.
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(Picture Credit 1.12)
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In the previous image: Christy Brown in his room, tap-tap-tapping away on his typewriter.
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Now Tito is in his bedroom, and I’m in the library.
He is tap-tap-tapping away on his computer keyboard. I respond by tap-tap-tapping away on my computer keyboard.
I send him a PDF of a photo of Christy Brown. I then explain to him over VoIP that Christy Brown’s cerebral palsy was far worse than his, but that didn’t stop him becoming an important writer.
I also send him a file containing The Pogues’ song and translate the words, which describe how Christy Brown, the village idiot, managed to become a respected writer around the world by typing — tap-tap-tapping — with his big toe.
Tito rapidly loses interest and switches off the VoIP.
Christy Brown felt a need to overcome his cerebral palsy. Tito is perfectly happy with the way he is. He doesn’t need any good examples.
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Christy Brown picked up a piece of chalk with the toes of his left foot and wrote the letter A. He was five years old. His parents realized that inside his paralyzed body was a normal mind, and they started stimulating him by talking to him all the time.
The New York neurologist recommended that we use the same method as Christy Brown’s parents, because Tito’s intellectual abilities were the best resource he had.
From that day on, Anna and I started bombarding Tito with words and more words. When he’s had enough, he switches off the VoIP.
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Christy Brown died when he was forty-nine, after choking on a pork chop.
To go back to Tommaso Rangone: the food that proved most harmful to Christy Brown’s health was a pork chop.
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Although the New York neurologist was wrong in his prognoses — just as the “idiot” Tommaso Rangone was wrong about Pope Julius III — he completely transformed our lives.
As well as recommending that we stimulate Tito all the time, he recommended that, during the Venetian winter, we go to live somewhere hot.
According to him, a child with cerebral palsy needed to be free and unimpeded and naked all the time. A child with cerebral palsy, according to him, needed to be in touch with the sand, the earth, the water.
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In the previous image: Tito and Anna witness the arrival of the Venetian winter.
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I quote myself:
We each have our own particular talent. Mine is leaving Brazil. No one leaves Brazil as well as I do.
If leaving Brazil were painting, I would be Rembrandt.
If leaving Brazil were literature, I would be Shakespeare. From one moment to the next, I can abandon everything and leave. In a calm and orderly fashion. I have more than thirty years of practice. I have left Brazil at every possible opportunity and stayed away for long periods. And it’s always worked out well. Because I know exactly what to expect of other places. Anyone who leaves thinking that he will find something better than Brazil is in for a disappointment. I never made that mistake. I left Brazil with the sole aim of being a long way from Brazil.
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When the New York neurologist recommended avoiding Venice in the winter months, my first thought was to buy tickets for Rio de Janeiro.
However often I had rejected Brazil, and I did reject Brazil, I could never deny that it was hot.
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Christmas 2001, we flew off to Rio de Janeiro.
It was hot.
Our plan was to stay for two months. We ended up staying for nine years.
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In the previous image: Tito on Ipanema beach.
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I look back now at the photos from that time.
Tito is free. Tito is unimpeded. Tito is naked. Tito is in touch with the sand. Tito is in touch with the earth. Tito is in touch with the water.
In Rio de Janeiro, we found everything that the New York neurologist had recomme
nded.
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We stayed in Rio de Janeiro for nine years — instead of only two months — because of Ipanema beach.
There was another reason too: a Bobath therapist.
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Karel Bobath was a pediatrician.
Berta Busse was a gymnastics instructor.
Born in Berlin, they had to flee Hitler’s Germany because they were Jews.
Berta Busse arrived in London in 1938. Karel Bobath in 1939.
They married and together developed a physiotherapy program for the treatment of cerebral palsy, known as the Bobath Concept.
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While Adolf Hitler, in Germany, was exterminating Jews and children with cerebral palsy, a pair of Jews who had escaped from Hitler’s Germany were developing a treatment for children with cerebral palsy.
That’s what Tito’s story is like: circular.
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Karel Bobath and Berta Busse both committed suicide on 19 January 1991.
He was eighty-five. She was eighty-three.
Together, Karel Bobath and Berta Busse developed a method for treating cerebral palsy and they remained together until the moment of their deaths.
Cerebral palsy unites people.
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We took Tito to his Bobath therapist for one or two hours, four days a week.
He had his muscles stretched. He was tossed around in a net. He was put inside a cylinder and rolled around the room. He had an elastic belt tied around his hips. He had his legs immobilized and was then made to turn the top half of his body. He had adhesive tape applied around his lips to stop him dribbling. He was held in an erect posture in front of a mirror. He had to sit down with his knees straight. He was splayed across a large red ball and rolled backward and forward. He was thrown onto a foam mattress. He was encouraged to crawl.
The Fall Page 4