damn ELA, why are you so cruel? | The USA Print

pepoour little brother, was 45 years old when he told us that he had THE A. I am going to tell you something that I have already told. Juan Carlos Unzue, who was (is) the repera, was a small thing next to Pepo. Pepo, boss of Institute of La Garriga, a myth for his students, he ran marathons, played a tennis match every day, three futsal games, practiced baseball… It was pure stainless steel. I repeat it: Stallone and schwarzenegger They were a joke, breastfed children, next to Pepo. And that damn cruel ALS devoured him in three years.

that visit to the doctor

I remember that when Pepo told us that he suffered from ALS, 26 years ago now, I went to a building that the Generalitat had at the time in the Gracia neighborhood, where each rare, strange, unknown disease had a small office and there they treated you or a doctor, or a relative of a patient, or an expert volunteer, who told you what was going to happen to your brother….and his family.

That day a retired doctor was working in the office, who had taken an interest in the disease when he retired to help families. He told me everything while I was shaking and crying my eyes out, just what happened to me on Thursday at the Aribau. And the moment came when the doctor finished off his presentation with the most brutal phrase I have ever heard in my life (and I am 70 years old): “You will not believe it, because now you see your brother with a vitality out of normal, but Pepo will end up talking to him with his eyes, sorry, with his eyelids, which is the only thing, perhaps, that he can move in his last days ”.

So it was. After being as brave as ever, as strong as Unzué in this documentary, as vital as all the colleagues who appear in Juancar’s film, Pepo ended up watching Barça with all of us, speaking with his eyes, vocalizing with his eyelids, asking water or that we turned up the volume in case I could hear the song of the Barça goals clearly.

That ALS patients are a model to follow, to admire, to care for, to adore, is true. Too true for us and, apparently, as Unzué denounces, very little visible “nothing, nothing” for politicians, who continue to turn a deaf ear to the situation of thousands of families.

You spend ten minutes with Unzué and you would take him home. He is adorable and above all our ‘Superman’. And that he does not care to be our hero. For this reason, to the surprise of his wife and three of his children, he decided to turn his last years into an example, not of survival, but of life, of denouncing, of course! Someone must shout, if only to ask for help.

“The economic aspect is not going to condition me,” says Unzué. “I will be the one who says ‘up to here’, because I have that economic and family stability that helps me cope in the best possible way. I have been able to verify that we can have the same disease, but the diversity of circumstances changes absolutely everything. It is a very expensive disease, but it is not more expensive than others”.

help please

“What makes it more expensive is the lack of aid,” the Barca exporter continues. “95% of my colleagues cannot bear the costs of suffering from ALS, especially when there comes a phase in which you suffer from respiratory problems, that you have to have a tracheostomy to stay alive. You need a person always by your side, who should be a skilled and sanitary caregiver. And many decide to die. And I think that there are reasons to say ‘up to here’, but that the decision is conditioned because they believe that they are an unaffordable economic burden for their family is what I believe that we should not allow as a society. It’s not fair”.

Unzué lived the days before making his situation public with enormous doubts. Not everyone around him at that time was clear that telling it would go well for him. But Juancar wasn’t talking about him, he wasn’t just thinking about him, about what could happen if he revealed that he had ALS. Unzué was thinking about the movement that could provoke, organize, assume, to put a face, eyes, pain and seek help and solutions to the worst disease that exists, the cruelest, the one that has no mercy for anyone or anything.

“I think that if I had not made this decision, it would possibly have been the biggest mistake of my life,” Unzué insists. “From a selfish point of view, giving and helping the cause is giving me the possibility of receiving in a multiplied way. And if that respect and affection that you receive is priceless. I feel like it was the great decision of my life.”

One thing is clear to Unzué, who, of course, at the Aribau caused the greatest outburst of applause, oles, cheers, smiles and tears ever seen and heard, “as long as I have a bit of strength I will continue to the fullest with this cause, no I’m going to stop, I can’t stop, I shouldn’t stop, not anymore, I’m going to continue with my whole team demanding what is fair. We have made visible something very cruel and unfair at the same time and, therefore, we have managed to make noise, a lot of noise, and, I suppose, that this will cause politicians to make decisions. Everything is going slower than we would like, yes, but I hope that this leads to seeing that aid arrive as soon as possible ”.

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Dozens of cinemas throughout Spain will begin, starting today, to offer viewers this spectacular documentary, “a film of life, not of sadness”, explains Xavi Torres, with which Unzué wanted not only to open his life and that of his sick companions, but to demand what is fair: that politicians do something useful for society, to help. It would cost them nothing, zero, to offer a bit of hope to so many people who begin to suffer, together with the patient, from the moment of diagnosis. “ALS does not destroy you, it turns your whole world upside down, your whole family, all your friends, without them you are nobody,” Unzué claims.

Me and mine are witnesses of it. It’s been 20 years and although I haven’t spoken to the wonderful Dr. Jesus Pradas, the neurologist who treated Pepo at the Hospital de la Santa Creu i Sant Pau and received so many talks about Pepo’s Barça (“Emilio, we couldn’t talk about anything else, mine was hopeless and Jesus knew better than no one”), I have the impression that medicine has not advanced much and the way of the cross for patients is too similar. That is why Juancar does well not to loosen up, as long as he has strength left.