An overwhelming silence attentively attended the speech of Juan Carlos Unzue. A life lesson. One more from the exporter and former coach, in another inspiring, touching, emotional talk, to explain what is IS IT OVER THERE. A devastating, deadly disease grotesquely simplified into a few acronyms and three words: Amyotrophic Lateral Sclerosis.
The stillness was broken with spontaneous applause from the audience listening to Unzué in the Casa Seat auditorium, during the talks Afterwork that organizes El Periódico de Catalunya and that, contrary to that name, what it tries to do is connect people with each other. And that clap went up when Unzué exposed the hidden problems that affect ALS patients, his “companions” as he calls them, his “disciples”, It should be said because they already call him “the coach”.
“It helps me a lot to continue feeling useful,” says Unzué, a qualified, magnificent, tender, didactic, enthusiastic, charismatic, attractive, exemplary spokesperson. Unique. Vitalistic to an extreme degree, without having suffered a day of downturn since in July 2019 was diagnosed. “It helps me to know that if I’m fine, you’re going to be better than if I’m depressed or sad,” maintains who declares himself an “altruistic egoist”, an expression that he has made his own since he knew how to describe that state of mind by the that one is happy to generate happiness in others.
spontaneous applause
This clandestine, unknown problem is not the repercussions of this degenerative disease that leads those affected, in the last stages of the disease, to “communicate through the irises” -paragraph: those who have the economic means to access this technology – “to feed through a tube, to breathe or live through a respirator after tracheotomy”, as Unzué cruelly described. They assume it. Because they know that this will be the path they will be forced to follow.
The applause stood out when the 54-year-old former coach from Navarra contrasted the different speed of time that separates the reaction of people when they are aware of the magnitude of ALS, immediate, fast, collaborative, from the times that politicians manage. Which are people, of course. And there was one, called Joseph Maria Argimon, the Minister of Health of the Generalitat de Catalunya, who listened to the elegant message that Unzué transmitted -it would have been the same without him in the room, it was not a direct question- on behalf of all the patients.
Unzué told Argimon, but he told the whole society, that it is unnecessary to put under added stress patients who suffer from a fatal degenerative disease all the bureaucracy necessary to process their incapacity for work, at the beginning, the disability later, and dependency at the end.
Absurd and incomprehensible
That it is absurd for a medical court to ratify between 8 and 10 months after the diagnosis issued by the specialist, that it has already taken between a year and a year and a half to dictate the sentence of ALS by ruling out other degenerative diseases.
That it is incomprehensible that 80% of investment in research is private and that only 20% is public. Not to mention how unaffordable it is that families have to pay the caregivers of the sick (the floor of three people, eight hours a day, 365 days a year) without aid from Health or Health. “We do not occupy a bed in a hospital, we do not cause the expense of a treatment,” explained Unzué, who opposed this situation to cancer patients, for example, without wishing to create controversy. He did it out of knowledge: he too had prostate cancer before he knew he had ALS.
