Thursday, October 09, 2008

This is ALS


In the Unites States, Lou Gehrig is the face of ALS. It's not even ALS anymore -- it's his disease, imbued with memorability and dignity by that sorrowful, preternaturally composed speech the still-healthy Gehrig gave when he told the world about his illness. In the consciousness of most Americans, ALS is the stuff of old movies: Shot in black and white, poised, impossibly handsome, and shrouded in an air of unreality.

In Italy, Stefano Borgonovo is the face of ALS. He's 44 years old and already confined to a wheelchair, his nervous system ravaged by a disease that's taken every ounce of his external dignity (but none of what he holds inside). When he appeared on television last month to reveal his illness to the nation, the sight of his twisted form was greeted with shock by a country accustomed to strength and control from its sportsmen. Even in a nation where former players of Borgonovo's generation are dying in numbers far too large to be random -- another was lost to leukemia, ALS's companion stalker of former Italian footballers, just last weekend -- their deaths happen in private, coming to the attention of the public only after dignity is assured. After the lives end, then the protests begin; only after death do people ask why so many young men are dying of the same diseases; why ALS and leukemia have chosen to claim Italian footballers as their own.

With a quiet ferocity, Borgonovo has changed all that. In his television appearance, he forced the nation and those who play the game he loves to see the reality of what until now has been an abstract concept. And now, for the first time, players -- young players, players in the prime of their careers -- are admitting something: They're terrified. In interviews conducted at Italy's national team camp the day before a match to benefit Borgonovo's foundation for ALS research, player and after player used the word paura -- fear -- to describe how they feel about the disease, and several suggested they all should donate a percentage of their salaries to research. No longer are these athletes untouchable; no longer will this strange plague hit someone else. Bogonovo has made it tangible. ALS is real.

* * *

On the pitch and benches in Florence are two generations of Fiorentina and Milan players, from youngsters like Matteo Darmian and Manuel Da Costa to legends like Roberto Baggio and Ruud Gullit; from the newly arrived Ronaldinho to Milan lifers Paolo Maldini and Billy Costacurta. But the cameras are concerned with only one man: Borgonovo. After an emotional pre-game ceremony, he sits pitch-side in his wheelchair, often with Roberto Baggio as company, taking it all in. Every time there is a substitution, a goal, or simply a moment of joy, the camera cuts to Bogonovo, seeking his reaction, and TV audiences are confronted over, and over, and over again by his strained face, wide eyes, and unnatural expression. This is ALS.

After the match, he is wheeled by Baggio in a sort of lap of honor, saluted first by the players, and then by the fans. He sits in his chair before the Curva, and Fiorentina supporters sing to him. They look at this man, trapped in a body that has betrayed him, and they sing as if their lives depend on it, full of joy and pride and love. And full, for just a few minutes, of hope.

3 comments:

rubyneraluna said...

I feel pretty small for spending so long rantyflailing about my lack of Billy last night. This is beautiful, Martha. Thank you.

Martha said...

Thank you, Ruby. (And please -- even Interisti know missing Billy is worth a bit of a strop!)

scf said...

my god you write beautifully mott