01-09-2008 - Traces, n. 8

Stefano Borgonovo

The Adventure of a Living Man
From the soccer pitch to a bed, attached to a respirator: he suffers from Amyotrophic Lateral Sclerosis, which gradually paralyzed him, since his discovery of the illness three years ago. Today, he has decided to tell his story: all about his wife, children, friends, and his ability to communicate, as well as his many projects for the future. He has never once thought of pulling the plug

by Paolo Perego

it’s the evening of April 18, 1990. Munich stadium is packed with fans and it’s the semifinal of the Champions Cup between Bayern and Milan. The Italians won the away game, but now Bayern has scored and the result is wide open. Play goes into extra time. Ten minutes later, Stefano Borgonovo, Milan’s striker, sent on in the second half, lofts the ball over the head of Aumann, the German goalie. As the ball lobs into the net, Stefano already has his arms raised. Milan goes through to the final where they defeat the Portuguese team Benfica.
When I happened to come across his story, memories flooded back from that evening 18 years ago.

“All this is life”
I’m thinking all this as I drive behind the car carrying the young nurses going to see him at his home in the heart of Brianza, where Stefano was born 44 years ago. Last week, he came home from Milan’s Niguarda Hospital, after six months spent in NEMO, the neuromuscular ward for patients with ALS and other motor neuron disorders.
Today, Stefano has ALS. He is unable to move. He breathes and is fed by medical equipment as he lies prone in bed. The disease prevents his brain from communicating with the rest of his body. The illness strikes progressively at the motor neurons, cerebral nerve cells, and the spine marrow that make movement possible. The cause is unknown. There is no cure; medicine can only slow its spread, warding off death for a while. Together with Maria, Antonella, and Pietro, nurses who became his friends at NEMO, we press the doorbell.
His wife Chantal welcomes us. She is just back from kindergarten where she picked up Gaia, the youngest of their four children. Stefano is lying in bed, and as soon as he sees his friends a smile creases his face. A few seconds later, a metallic voice exclaims: “Hi there guys!” It’s Stefano’s new voice, a synthesizer that reads the words he taps onto a screen with his eyes. It works by an infrared system that reads off the motions of his pupils. Beside him is a big bookcase. “Pietro, pull up the shutter. Look at the top shelf. A flat box,” says Stefano. The box holds sheaves of photos, a repository of memories. With “Chanty” we look at photos of Stefano: at dinner, at the seaside, during training… “Look how gorgeous Stefano was,” she laughs, and holds out a photo to the girls. Today she’s the one who looks after him, aided by her children.
Stefano jokes with the nurses. Chanty brings in drinks. The window behind the bed is open. Stefano is there, unmoving, and he’s happy.
I sit close by so as to read what comes up on the screen. It all began in October 2005. “One day I just found I couldn’t utter certain words,” he explains. For three years, he had been coaching the youth team in Como, where he began his career. Some time earlier, he had opened a soccer school, Extrasport, in the neighborhood where he lives, after giving up the professional sport. “At first, I was confused and frightened. But my family and friends were here, and they helped me a lot. And then my character….” Stefano is volcanic in his vitality. He tells me his story as best he can and at the same time keeps joking with the other guys.
“Soccer was like a third parent. It taught me a lot, and helped me grow up, in part thanks to some great guys I met on the teams I played for.” He left Como for Sambenedettese, then came his golden period in Florence and Milan, with appearances on the Italian side in 1989. Then Udinese, Pescara… and back to Como. “Remember my goals?” He was an acrobat, doing bicycle kicks, diving head first at the ball, and very fast. Stefano’s eyes, dark, deep, bright, are the same as in those days. What life is this, Stefano? “How do you mean? Look at Chantal. Look at my children… Love.”
“Hi Daddy,” answers Gaia, without looking up from the book she is leafing through on the sofa.
“This is life,” he says. His friends from NEMO are laughing at an old photo of Stefano making fun of Roberto Baggio… “Look at them! This is life.” Friends, soccer school, movies, music. “All this is life.”

Goals to reach
“There are some who in your place would pull the plug, who say it’s not a life worth living…” He responds, “I’d tell them this: try to keep the ability to feel wonder. If you can’t, then you’ll pull the plug. But it’s selfishness….” And then, he adds, laughing, “Who’s to say they won’t find the ‘new penicillin’ for this illness? I’ve got great plans for the future, a lot of goals to reach. Above all, I want to see my kids grow up, study, settle down.” And jokingly he tries to marry off his eldest, Andrea (20), to Maria the nurse… “I’m writing a book, too,” with letters, thoughts, reflections.
“I want to open a foundation in my name, to collect funds. We patients have to be able to live using instruments like this one I’m using to talk to you with.”
He shows me his work on the computer, his letters… He says he has a lot of things to do. Two hours have passed since we arrived. And in the car, I think back to that goal, to that child who saw him as a hero. Eighteen years later, I have discovered the truth. He was just a man. A true man.