Juan Carlos Unzué, without taboos on ALS: “There is a magic word: accept” | Sports| The USA Print

Juan Carlos Unzué, without taboos on ALS: "There is a magic word: accept" |  Sports

In June 2018 Juan Carlos Unzué (Pamplona, ​​​​55 years old) noticed that something was not right. One of his fingers had a different rhythm, was uncoordinated, lacked mobility and strength. A year later he was diagnosed with amyotrophic lateral sclerosis (ALS), a neuromuscular degenerative disease. He began a new life there for which he was a goalkeeper for Barça or Sevilla and coach of teams like Celta and Girona. He also for those around him, especially for his wife, María Elorza. Faced with the drama, far from throwing in the towel, the Navarrese has come up. He is the most visible face of the people who suffer from this condition. And his desire to live is transmitted both in short distances and on the screen thanks to the documentary Unzue, the last team of Juancar (Unzué, Juancar’s last team) directed by Xavi Torres, Santi Padró and Jesús Muñoz and premiered this Monday at the Malaga Festival.

Unzué’s agenda has been full during the film competition. During his stay in Malaga, for just over two days, he has given a dozen interviews, won a round table and attended the film’s premiere. He did it at Antonio Banderas’ Teatro del Soho with a clear objective: to publicize the consequences of the disease itself so that “something changes”, says who barely has 15 minutes to chat with EL PAÍS. Listening to him time goes by at full speed. He talks about adaptability, visibility and loneliness. To value essential even before going through critical situations. And that life is worthwhile despite the circumstances associated with a disease that affects some 4,000 people in Spain. “There is a magic word: accept. The moment you accept that diagnosis that you can neither control nor change, everything, within the difficulty, is a little easier ”, he affirms.

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While answering the questions, he has Xavi Torres by his side and his wife in front of him. She elores, silent, she prefers to go unnoticed. Unzué’s media exposure grows every day, but the former professional athlete is not tired of that. “Physically, someday, yes. All this generates me a lot of positive energy and it pays me off. It makes me feel useful, happy in many moments and that helps me. I feel that when you hear the harsh reality you are shocked. That makes me feel that I have you close, that you are watching. And I thank you very much. Because it is what this disease requires”, points out the protagonist of the documentary, whose changes are evident throughout the almost three years of filming. In 2020, for example, he walks to the interview set. In 2022, he does it in a wheelchair.

“On a day-to-day basis I don’t realize it so much, but in the documentary I have seen the physical deterioration,” says his wife. “I am clear when some changes have occurred, but not others. This is a very sneaky disease that little by little takes away your abilities ”, she underlines. He draws attention to the positive way of dealing with what has no remedy, because ALS is a terminal disease with no cure. The documentary follows his example: he does not forget reality, but directs the camera towards the light. “You can’t do something so that the viewer is crying for 90 minutes. In life you laugh and cry, as they do,” says Torres, who believes it is “a shame” that jobs like this have to attract the attention of the administration. “They have no help, no visibility, nothing. This cannot happen to the modern society of an advanced country ”, underlines she, who has composed a story charged with emotion that is close to the intimacy of Unzué. With his partner, with his children or when he gets on a mountain bike for the last time. The cameras also accompany him while he sings what you give meby Pau Donés, in a static or when he goes to the hospital.

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“The disease is a bitch, it’s complicated, we don’t get hooked,” he admits after finding a new meaning in his life, far from football. “There is a before and after for Juan Carlos Unzué in the world of ALS”, says Esther Sellés, director of the Miquel Valls Foundation. “Now she is the face of ALS”, adds Natalia Yepes, widow of a patient with this disease, during the film. And he faced it with a smile, away from the drama. He assures that in the almost four years that have passed since the diagnosis he has not had a single downturn and, in return, he has lived “many good times.” He proves himself in a job that includes dramatic situations and tragic circumstances, but that he moves away from crying to look forward.

It is what those other ALS patients who Juan Carlos has met and signed for what will be his last team do. “Thanks to him, the disease reaches many more people who did not know what it was,” says one of them, Jordi Sabaté, via email. He is 39 years old and was diagnosed eight years ago. Very active in networks, he communicates through social infrared reading his gaze.

Sabatés highlights the celebration of the match last August between Manchester City and FC Barcelona in front of 91,062 spectators. More than four million euros were raised for research on the disease. Earlier, Unzué addressed the two squads in the changing rooms while Xavi Hernández and Pep Guardiola watched. He then accompanied each half of the game to each of the coaches on the bench. His bright eyes and the smile that that encounter will star in the movie poster. “It is the feeling I had at that moment. Because friendship was the main reason for that game and because I perceived the number of people who wanted to lend us a hand,” says someone who remembers the exact figure —4,362,872 euros— that was raised that day. “It is something material, yes, but we allocate it to ALS research,” he points out. “Finding a happier time than that will be difficult,” he concludes.

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