Juan Carlos Unzué: "It's frustrating to see the lack of empathy from those in power. We're talking about lives."

BarcelonaIt's been almost six years since Juan Carlos Unzué (58, Navarra) received life-changing news: he was diagnosed with amyotrophic lateral sclerosis (ALS). Since then, the former football coach has managed to bring new meaning to his daily life and turned misfortune into a reason to fight. He left the First Division coaching benches to lead the movement for the dignity of ALS sufferers and has reaped rewards: after repeated attempts, Congress approved the long-awaited ALS law a few months ago. Now, after years on the front lines, he has decided to step back and announced that he will stop broadcasting on DAZN. He also explained that, in the end, he will not perform a tracheotomy, the surgical procedure that allows ALS sufferers to continue breathing. He is responding to ARA in writing.

How are you feeling?

— Mentally, I feel strong and calm. I'm prepared for whatever comes, which is all I can control. Physically, I'm increasingly deteriorating, and my breathing is limited.

Her life changed from one second to the next. Of all that she's experienced, what will she remember?

— I think I've learned to value and take advantage of the present a little more. The here and now.

Over the years, you've always expressed a positive attitude toward life. What has kept you happy?

— The key has been feeling useful. Giving my life a new, completely satisfying meaning. And also feeling that I'm well supported by my family and friends.

Your approach to the disease has been through activism. What led you to expose yourself so much?

— Because for me, ALS was also a great unknown. I thought it wasn't good, and I decided to take advantage of the fact that I was a relatively well-known person to make it visible. I wanted to explain the harsh reality of the majority of those affected.

Has it taken its toll on you?

— Yes. It has taken its toll on me, but in a very positive way.

How has your family lived?

— I think it's a positive thing, and that's a lot to be thankful for. It's motivating for me to know that if I'm okay, the people I love most will be even better.

Ultimately, you decided against a tracheostomy. What prompted your decision?

— Two reasons. The first is the result of having met a few colleagues who have done it. From my point of view, it doesn't provide enough quality of life for me to continue feeling useful. I wouldn't know how to give meaning to life. I admire those who know how to find it.

And the second reason?

— I was diagnosed with the disease six years ago, and I don't want to further affect the lives of those close to me. Especially my wife, who has already shown how much she appreciates and loves me. She's always been there to help me with anything I've needed.

After years of struggle, you successfully passed the ELA law a few months ago. How did you receive the news of the agreement?

— With great joy and satisfaction. However, we didn't know it would take so long for aid to reach those affected. With ConELA—the confederation of ALS sufferers' organizations—we have presented an emergency plan consisting of advancing approximately 60 million euros to care for and assist people in an advanced stage of the disease who require assisted ventilation for a minimum of 16 hours. It is also aimed at those who are about to decide whether to undergo a tracheostomy or not. We cannot allow anyone to feel forced to die while still wanting to live. It is inhumane and should be sufficient to expedite all processes.

Bureaucracy…

— It's disheartening to see the lack of empathy and will among those in power. We're talking about lives. I think it's reason enough to prioritize getting aid to those affected.

They had already encountered many obstacles along the way. How did you experience the famous visit to the Congress of Deputies, during which hardly any congressmen showed up?

— The process has been very long, and that day in Congress was a huge disappointment for all of us. The politicians' lack of empathy and commitment was evident. Curiously, that news went viral, and I think it helped us achieve the ELA law's passage a few months later.

Finally, how do you see Barça? Is this the year we've been hoping for?

— I see Barça doing very well. They're full of enthusiasm and intensity. They're very convinced of the game plan the coach is instilling, and I think there's a good chance they'll continue winning titles. Whatever happens from now on, I think the season has been very fruitful, and we need to continue it to take the project to the next level.