Juan Carlos Unzué: "There are two important things: value the present and don't look too far ahead."

It was impossible for Juan Carlos Unzué to attend the ARA celebration where he was symbolically presented with the sixth Carles Capdevila award for his work in raising awareness of amyotrophic lateral sclerosis, the dreaded ALS, a disease that the former player has suffered from for over five years. Although he sent an emotional and assertive message of gratitude, We were finally able to present him with the award in person during an interview in which he reflects on his fight to improve care for people with illnesses like his, as well as his sporting life and, above all, his perspective on life and the values he uses to cope. Unzué, whose illness has already forced him to give up his work as a sports commentator, has used his fame to help bring the issue of care and the enormous cost of this debilitating illness to the forefront of the political agenda, which has contributed to the approval of [the relevant legislation]. a law that specifically guarantees financial support for the most serious cases, It streamlines procedures and ensures better training for healthcare personnel. He welcomed us a few days before Christmas to his apartment on the outskirts of Barcelona. He was accompanied at all times by his wife, with whom he has shared his life since they were very young, and by a family that is about to grow with a grandchild. In Unzué's home there are many difficulties, but also great humor and a lot of generosity. The former goalkeeper excitedly described the car trip to Pamplona to spend the Christmas holidays with his large family, headed by his mother, Camino. Unzué made it very easy for us: he is exactly as he was. Precise, generous, a fighter. And he has a common sense that leaves you speechless with useless words.

Thank you for welcoming us into your home. How are you feeling?

— Well, I'm doing well. It's come at a good time, you know? Well, considering the nature of this illness, because this summer the doctors recommended I use the ventilator not only at night, but also during the day. And, of course, with the heat we've had, it's been wonderful, especially when I was at home in the afternoon: putting on the ventilator relaxed me and I was much calmer. I even think that, compared to last spring, I've recovered a bit of my voice. So I can tell you I'm doing well.

Something unusual has happened to me. Everyone I've told that I'm coming to interview you has said, "Please convey my respect. You're an extraordinary person. What a great guy." It's touching…

— I'm grateful. It's not that I think people should think what they think of me, because I'm not perfect. I've made plenty of mistakes throughout my life too. But it's true that I think people are judging me for what I've been doing these past few years. And I've done what I believed I had to do: give a voice to those who practically didn't have one.

At what point do you think, "Since I'm in this process, let's try to be helpful"?

— Well, quite quickly. As you know, I was diagnosed on July 1, 2019. At that time, I was the coach of Girona. I left Girona at the end of October 2019, and that's when I stopped to reflect. I decided to use the platform I felt I had, which was somewhat larger than others', to raise awareness about ALS—a disease that was completely unknown to me. And I can tell you that it was one of the best decisions I've ever made.

And what surprised you?

— Above all, we've created a society where what isn't visible doesn't exist. And then, so much happens right around us and we don't even notice. In the end, you realize that many people are suffering terribly, especially with an illness like this. I always say that there was a very important day for me that, on the one hand, deeply affected me, but on the other, gave me the strength to move forward: the day I learned that there were fellow patients who, despite wanting to live, were forced to die, and moreover, to die because of financial hardship, because there was no support available. This was very shocking, but I recognize that it gave me a lot of strength to keep fighting and demanding what I believe is absolutely right.

You have worked to change it.

— Yes, things are improving. The aid mandated by the law hasn't arrived yet, but I think we're very close to it, and discussions are underway with the regional governments to ensure that Catalonia is one of the first to provide this aid.

Being a goalkeeper requires emotional control and rationality. Has this helped you?

— I understand that's the case. I always say that I'm still the same Juan Carlos Unzué I was before the diagnosis. My cognitive abilities aren't affected. I was the person who thrived through sports. And, obviously, goalkeepers are called "the odd ones out": firstly because we dress differently, and secondly because—let me be clear—I was the odd one out among the odd ones out. I've never heard of another goalkeeper who loved to run as much as I did. And later I also coached many teams.

How have you tried to lead the teams?

— I decided to become a head coach for one reason: to try and contribute something to my players, something I had learned from many different and very good coaches throughout my career. I believe that a leader's first priority should be to contribute, to give to others, so that the day they leave, the players feel they have improved under their guidance. After that, you know how this sport is: if you don't win, you're out. Whether you're the best or the worst. Impatience is deeply ingrained in us.

What has been your best day in sports?

— There are many. But I especially remember the match against PSG, that 4-0 comeback. And also the day 91,000 fans filled Camp Nou for a charity match for ALS between Manchester City and FC Barcelona. Not for me, but because we raised over four and a half million euros for research.

What would you say to people who are not sick and who often complain or get discouraged?

— I should have told myself that too when I was healthy. There are two important things: value the present, the here and now, and don't look too far ahead. And then, appreciate the little things, the small details, which you don't value enough when you're well.

What do you like now?

— Taking a walk in my wheelchair. Just today I went to get my hair cut a kilometer from home. That time is mine. The chair has given me independence, which you don't have with this illness. I'm practically one hundred percent dependent, but once my wife puts me in the chair, I can still enjoy this solitude, which I think is important.

Is this ongoing support what costs the most?

— Yes. They're very simple things: scratching, touching your face… Now I have to ask for all of this. And sometimes it's difficult even for my wife to understand all these little things.

You were talking about loneliness…

— The worst thing that can happen to a sick or elderly person is to feel alone. We need to socialize, go out, and feel loved.

When you're alone, what do you think about?

— I'm very simple. I don't dwell on things I can't change, like the diagnosis. As long as I keep my mind occupied, especially with football, I'm fine. And I'm very proud of the family my wife, our three children, and I have created. Seeing them so involved and close is a great source of satisfaction.

What value have you wanted to pass on to your children?

— Being honest and being a good person. This encompasses many things.

Have other people with ALS impressed you?

— Yes, there are many with enormous mental strength. It also depends a lot on age. If it hits you in your 30s, you still have the feeling that you can do things. If it hits you in your 70s or 80s, it's more complicated. I have a group of friends with ALS who have inspired me a lot. And I've also seen extraordinary families and groups of friends. This is priceless.

What do you think of Flick's Barça?

— I see him doing well. He's had some tough months, but I think he'll be fighting for titles in the end. He deserves a lot of credit given the economic climate and for investing in young players and La Masia.

Has the goalkeeper's perspective helped you as a coach?

— Yes, although goalkeepers have 180-degree control. Midfielders have 300-degree control, and it's no coincidence that many great coaches have been midfielders themselves.

Would you do anything differently in life?

— I'm sure I've made mistakes, but those mistakes have helped me grow. What gives me peace is knowing that when I've wanted to do something, at least I've tried. Not living with the "what ifs." Now that would have been terrible.

Thank you so much. As a goalkeeper and coach, I loved you dearly, but as a person, you are a giant. Thank you for what you have done for ALS patients and for helping us understand what it means to live.

— Thank you for coming to see me and for the award.