–In July 2019, Dr. Rojas confirmed that I had ALS. He was extraordinarily sensitive when he communicated it to me – Juan Carlos Unzué (53) tells us.
-Sensitive? In what sense?
–I had been experiencing symptoms for a long time. Years ago, when I was cycling with Luis Enrique, I felt discomfort in my hands. It wasn’t pain, but cramps, spasms. Sometimes the cramps appeared at night, after an intense effort on the bicycle: the nervous system had not recovered, it was still active and generated them. Then I would wake up, do some stretches and go back to bed. What happens is that things were getting worse.
There are worse things than ALS, like dying in an accident or a disease that kills you; leave without being able to say goodbye … “
–¿…?
–Sometimes I was training my players (apart from a front-line goalkeeper, Unzué has been a goalkeeping coach for Barça until 2017, and also a coach for Celta and Girona) and he tried a shot. I’m not Messi, I never have been, but the kick came out strange. And other times my legs gave out and I fell on a step or wherever. What was surprising was not the fall, but the force that others had to apply to get me up. And that whole process took shape, inevitably, in the summer of 2018, when the left index finger lost its strength and began to go at a different pace.
To my children, one Christmas night, I spoke clearly: I did not want them to go to the Internet: today they are aware of what is coming “
“And then, definitely, he put himself in the hands of the doctors,” he is told.
–When I sat down before Dr. Rojas, I was already preparing myself. So I asked him, ‘What do I have? Multiple sclerosis or ALS? And this is how I knew.
-And so?
– They told me that, in my case, it is a slow progression ALS. When we see each other, Jordi Sabaté (a patient with ALS who is very active on social media) always tells me: ‘How slow is yours!’. And it fills me with energy and joy. Although the thing advances.
– How do you check it?
“I don’t go out much of the house.” But the other day I was walking to the hairdresser, which is nearby. He hadn’t done it for five months. And on the ride, I assure you that I noticed the difference in this time. This disease progresses …
“I feel like a better person than a year ago”, says Juan Carlos Unzué
(…)
The conversation also progresses. It lasts for two hours.
Unzué’s speech is hypnotic. Every word has weight. When he speaks, he gestures with his hands. Share the information with the interlocutor, also listen. He talks about his family, his wife and his three children.
We have met at his home in Esplugues, a single-family house with access to a small garden and stairs to the bedrooms. The family studies leaving the house. Unzué already has a hard time climbing those stairs.
The figures of four cyclists occupy the center of the table in the living room. The mountain jersey, the yellow, the regularity green and the rainbow are distinguished.
“I would never guess who gave them to me.” He was a goalkeeper very close to me –he tells me.
Nobody comes out.
–Zubi, man! –dice.
And laugh.
I have no pain. The discomfort came from the cramps. They arose at night. I woke up, started stretching and went back to bed “
Eusebio Unzué, today manager of the Movistar cycling team, is his brother.
Cycling, like football, is part of the family imagination of the Unzué, Navarrese like Indurain. Juan Carlos Unzué relives the days when Collserola traveled with Luis Enrique, a legend of many things, including triathlon. An exercise bike rests in one corner of the room.
Unzué cycles for an hour every day, today too.
– I put on my jersey and shorts and headphones with electronic music, or Deep House, and I escape from what I’m experiencing. Sometimes I also listen to Pau Donés. I have read your interviews for the last two or three years. I have felt reflected in it. For me he is a model, someone who has managed to cope with joy and sincerity, until the last moment, a very serious illness. ‘That you give me’ is a song that moves me. I dont know. It will be a matter of my current situation.
(…)
The door opens and María, Unzué’s daughter, enters. Her boyfriend accompanies her. They both come walking from Sagrada Familia. It is a walk of almost two hours.
Then Unzué’s wife, María, arrives. They offer us a drink. Everyone asks us about our work, about our things.
They listen, like the father.
(…)
– How did you feel when communicating the news to your children (aged 29, 27 and 24)?
-That conversation at home was emotional. The five of us meet in this space. It was Christmas 2019.
“They didn’t know anything?”
– Man, they sensed things. But that day I spoke clearly to them. I told them about the disease, about life expectancy … I didn’t want them to go to the Internet. Today they are aware of what is coming. But I must maintain my state of mind as long as possible. If they see me well, life is easier for them. Today I use myself for almost everything. But I have no doubt that when I need them, I will have them by my side.
There are few patients, and it seems that we are not interested in research; but to have help for ALS, we are too many … “
– And are you afraid?
-I do not have it. And less, fear of death. They tell you: ‘Life expectancy is between three and five years …’. That’s hard: We will all leave this world, but my life has been limited. But you know what?
-Tell me…
– What worries me is the quality of my time. I want to feel useful. Look, my mother turned 94 years old. And I still see her out there, cleaning the table. And I say, ‘But mom, what are you doing?’ And she answers me: ‘Why am I not going to do it, if I can?’. And he is absolutely right, of course he is. Because my mother, like this, feels useful. And I want to give a hand to my 4,000 teammates in Spain, 4,000 people who are in my situation, whose circumstances are different.
-In what sense?
–I am at peace with myself. I have jumped in the pool when I wanted to. I have a strong and very close family. And an economic situation that allows me to face the disease until I feel like it.
Juan Carlos Unzué, this week at his home in Esplugues
–¿…?
–It pains me to see how some decide to disconnect when they reach the tracheostomy phase and they feel that they become a financial burden on their family. We can’t get to that. Because let me say something.
We cannot get to the moment when you disconnect due to an economic problem, because you are not a burden at home “
-Of course.
-They discovered ALS 150 years ago. And yet his treatment hasn’t progressed one bit. And do you know why? Because we are not too many, and that is why it seems that we do not interest researchers very much. However, when it comes to receiving the aid, then yes there are too many of us. I do not ask more than patients with other pathologies, but look at something. If you suffer from another illness, they admit you, spend four months in the hospital and leave cured. If you suffer from ALS, you go home, you live it with your family. We go free to Social Security. But nobody helps us. And this conditions your environment. The partner must stop working to take care of you. Two salaries disappear! I accept euthanasia, but ALS patients want a dignified death. Laws must adapt to what causes this disease. We ask that the money saved by Social Security be invested, as far as possible, in our well-being and also in the investigation of a treatment, which is our way out. And I insist: I do not speak for myself, but for my 4,000 teammates.
Then be silent. And he smiles again.
Unzué smiles a lot.
It’s a contagious, welcoming smile. Offers wellness.
– And how do you sleep today?
“I have assumed that I live in a world to discover.” But I understand that there is a key word in any situation in life: ‘accept’. We lose track of who we are because we believe that we control more than we control. You have to accept the diagnosis. When I think about all this, I don’t get the ‘why to me’ or the ‘what bad luck’. I accept it as part of my lifeJust as I did not complain about all the good things that have happened to me in other moments, which have been many.
Juan Carlos Unzué
– Do you think having been an elite athlete helps you?
-Of course. That life is a roller coaster. And when you are the goalkeeper, more. You are the different one. When you concede a goal, the whole team receives it, but you live it in your own name. As an athlete you are alone. If you fail, the press hits you. The coach doesn’t put you on. But when I felt most loved was in Oviedo (1999-2001), precisely where I played least.
There is a keyword. It is ‘accept’. I did not complain when many wonderful things happened to me, I am not going to complain now “
-Cast?
– Because from the bench, and in training sessions, he helped the team. Inma Puig, a psychologist in Rijkaard’s time, told me that this is called altruistic selfishness: you help others to help you. I consider myself a better person now than a year ago. I have learned that you enjoy giving more than receiving. Now I want to enjoy helping others. Also, there are worse things. You can die of an accident, or of a disease that strikes you and does not let you say goodbye.
Upon leaving the house, the three of them –Mané Espinosa, photographer; Martí Paola, video camera, and the chronicler – we were silent for a few moments.
In the end, one says:
“Buffff, I’ll never forget this interview.”
We all agree.
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