“It helps me a lot to continue feeling useful”

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 it is ALS. A devastating, deadly disease, grotesquely simplified in a few acronyms and three incomprehensible 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 organized by El Periódico de Catalunya and that tries to connect people with each other outside of each one’s daily work, as Albert Sáez, the director of the newspaper, underlined at the closing of the event.

“It is not an act to talk about the book or the disease, but to chat”, ad Mark Lopezmuch more than the host of the talk or co-author of the book A full life along with the prestigious Ramon Besa and Lu Martín, or friend, but a person of a similar human dimension to Unzué. And that applause broke out when Juan Carlos exposed the hidden problems that affect ALS patients, his “comrades” as he calls them, his “disciples”, it should be said because they have nicknamed him “the mister”.

“It helps me a lot to continue feeling useful,” says Unzué, a qualified, magnificent, tender, didactic, enthusiastic, charismatic, attractive, exemplary spokesperson. Unique. Vitalist to an extreme degree, without having suffered a day of downturn since he was diagnosed with that sentence in July 2019. “It helps me to know that if I’m fine, you’re going to be better than if I’m depressed or sad,” says someone who declares himself a “selfish altruistic” expression that he has made his own since he knew how to describe that state of mind by which 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 interpellation by virtue of the position- on behalf of all the patients.

Unzué told Argimon, but he told society as a whole, that it is unnecessary to subject those affected by a fatal disease to the added stress of 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 that a medical court should ratify the specialist’s diagnosis between 8 and 10 months later, which has already taken between a year and a year and a half to issue the sentence for 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.

Live the life

Disseminating information, raising general awareness and obtaining resources are the missions that Unzué has entrusted to himself, unequivocally taking advantage of his status as a well-known athlete to help others. “I don’t want to generate sadness, but to convey the idea that, despite the difficulties, life is worth living and that there are many ways to enjoy it,” he maintains as a motto.

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He continues to be hyperactive (without medical diagnosis, or self-diagnosed), going from here to there despite the limitations of the wheelchair, the same spirit as when he was seven or eight years old he wanted to play soccer with his brothers (he was the youngest of all six) and they sent him to play goalkeeper. In Orkoien, the hometown of him and Maria, his wife. He tried to show off in their eyes and hers, “so he killed two birds with one stone.”

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