José Luis Picón I Málaga, (EFE).- “ALS is very complicated, its consequences and the limitations it generates, but I feel that perhaps the feeling of loneliness is worse, it is a very sad feeling,” says Juan Carlos Unzué, who He has struggled to make this disease visible since he was diagnosed in 2020.
The former soccer player and former coach, who is attending the premiere of the documentary “Unzué. Juancar’s last team”, he affirms in an interview with EFE together with the journalist Xavi Torres, director of the film, that when he proposed to shoot it by making his diagnosis public, they wanted to “make noise so that ALS would be a little better known”.
Because each of the 4,000 affected by amyotrophic lateral sclerosis (ALS) in Spain have fulfilled their “obligations”, but when they receive the diagnosis they share that feeling of loneliness and that they “forget” about them, he says.
“Among all of us we are getting politicians to be more aware and know what ALS is. I hope this is enough to give us the possibility of, before dying with dignity, living with dignity during the disease process”.
Shooting the documentary implied invading his privacy, when he eats at home, takes a shower or does an exercise bike humming “Eso que tú me das”, by Pau Donés. “I told Xavi that we didn’t have to hide anything, and that we had to show the harsh reality and the limitations that the disease generates.”
Without losing the smile
Xavi Torres corroborates this: “If we add sugar to this harsh story, we are going to deceive ourselves, although we have to treat the issues with humanity.”
Unzué does not lose his smile at any time, and when asked if he is not suffering from low spirits, he assures that, “until now that day has not arrived”, and when it arrives he will “manage it”.
“I feel that this smile that I have is the one that I have had all my life. I have had a happy childhood, I have been an active and positive person from a very young age, and that has meant that I can have this smile for longer”.
He admits that at moments in his life that smile “has turned into lowered eyebrows, anger” and disappointment and frustration with himself, with his work or with his coaches, but those moments are what have “also made him grow”. and be the person you are.
“I’m going to try to keep this smile. If I keep it, the first beneficiary will be me, and as a consequence the people I love the most, the ones who are looking out for me, giving me all the love and respect. I will try to find motivation to keep smiling, if possible until the last day”.
And it is that Unzué also encourages those around him when they need it. “When María, his wife, has a bad day, she makes a small talk of hers, she changes his mood and he runs away”, reveals Xavi Torres.
More than 90,000 spectators at the Camp Nou for ELA
The only moment of the documentary in which Unzué is moved is when contemplating the stands of the Camp Nou packed with 91,000 spectators in the friendly match between Barcelona and Manchester City in which he raised more than four million euros to allocate them to the investigation of the ALS.
“What is feeling happy? It is what I felt at that moment, to see how the two clubs had responded. Friendship made it possible for the match to go ahead and 91,000 people contributed their bit”.
“That makes me feel very good, because it gives meaning to my life. From my position I can help so that all my sick companions can benefit. I know I have that chance and I have to take advantage of it.”
He feels that communities like Galicia are “listening” to them, but “these health issues should not be something that differentiates between communities, because diseases do not know their origins, ideologies or colors, so it should be something state.”
Unzué warns that 94 percent of ELA colleagues have economic problems to cover their needs, since “only in caregivers are 50,000 or 60,000 euros a year.”
“You have to adapt the aid to the disease, and that way we will be fair. If you can talk about justice or equality, the most unfair thing that can be done is to treat everyone in the same way, because the consequences of diseases are not the same for everyone”. EFE