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“Many ALS patients are let go because they don’t want to be an economic burden, and we can’t afford that.”

Surely they have received on their mobile a video of Juan Carlos Unzué in the dressing room of Osasuna. He told the players, “Be brave and daring. You stay much calmer when you look back and say, ‘I tried.’ in a wheelchair and think, “My life is worth it. I’m privileged.” Juan Carlos Unzué Labiano (Pamplona, ​​1967) was a goalkeeper and coach. In June last year he announced that he had been diagnosed with amyotrophic lateral sclerosis (ALS), a disease that affects the transmission of the order of movement of the brain to the muscles and that today has no treatment or cure. Unzué applies the terms of his talk: “There is a boy, called Jordi Sabater, who already has a tracheotomy and has to communicate through the iris and a screen, and when I leave his house I say to myself, “If he has been able to keep that smile, I will be able to.”

What did you do this morning?

– Enjoy waking up again and feeling like I had a chance to live a new day. Then, answering my cousins ​​’early morning messages, reviewing newspapers, having breakfast, and taking a few steps around the floor, because now I no longer have enough stability to go outside if it’s not in a wheelchair. At home I have the walls closer and I feel safer. I try not to let the disease take over my body too soon, and moving helps me feel useful and capable.

His video in the dressing room of Osasuna has had a great impact. You must have received an avalanche of messages.

– It is curious the repercussion it has had because it was something unforeseen. Osasuna coach Jagoba Arrasate asked me on a Friday if I could give a talk to the team the next morning, before training, and I went to bed thinking, “What will I tell them? “

And he told them that when they had a personal problem they should talk to a colleague about it, that they should not think that they were projecting weakness.

– It’s just that I’ve suffered. Look, I’m delighted with the education my siblings and I received at home, five boys and a girl, Elena. But maybe because our parents ’generation suffered a lot, what stayed with us at home is that men couldn’t complain. That’s fine in part, because not complaining makes you strong, but sometimes it blocks you because, who hasn’t had a serious problem? So, of course, if we don’t explain it how will they help us?

What did his parents do?

– They were farmers, they worked the land for the homes forts of Orkoien, a village that has now almost joined Pamplona. But my father got angry with the owner and set up a mill where he mixed cereal, and that ended up becoming a very successful compound feed factory for animals. It was a family business, my older brothers worked there and even I worked there, before I became a footballer.

Is that smile you’ve always had from your dad or mom?

– Of both. I thought we were very Unzues, but when my father died, in 2008, I understood my mother better. The mothers of that time stayed at home to take care of the children, so that everything was ready and to manage what little there was. Mothers had a lot of respect for their husbands, too, and when my father died my siblings and I discovered that our mother also had her personality. It was what made my father think. They were a fantastic couple.

I remember him when he signed for Barça, at the age of 21, in 1988, and he already had that smile.

– I was a child, in just six years I went from playing at school to signing for Barça. I had never left Pamplona, ​​as the saying goes, and living in a city like Barcelona gave my wife, me and our children a much more open mindset, made me feel much more capable of everything.

What struck me most was that he was always a substitute but did not lose the good mood on trips.

– Well, I never had a day of discouragement. Man, I was smiling but I was suffering, and sometimes I didn’t understand Johan, who stuck with me in ways that I once felt were disrespectful.

What was he doing to her?

– He demanded a lot of me, maybe because I thought that smile of mine was conformist. Until I realized I couldn’t live up to Andoni Zubizarreta and asked to leave. And you know how I realized that? From a very young age I liked to see the summary of the day they did in Stadium Study, but after a few months of being at Barça I no longer looked at him. And it was because he never went out there. He wasn’t happy because he wasn’t playing. In the end, Barça and Sevilla agreed on a double transfer: Nando came to Barça and I went to Sevilla. And there I felt very loved. And I played again.

Unzué reading 'Mano amiga', an illustrated children's story created to raise funds for a future treatment of ALS.

I told him this in a good mood because the doctors say his case is not normal, that most patients get drunk and angry.

– I am aware of that. I can’t tell you why, but I’ve never had negative thoughts, not even on the day of the diagnosis. Maybe it’s that professional athletes are trained for the requirement. Now I know I’m playing a very uneven battle and I try to play the cards I have, which aren’t good, in the best way possible. If I think about the future I know it’s black and so I automatically go back to that chair, to enjoy the interview. And to use my speaker to explain what ALS is.

Come in.

– In Spain we are about 4,000 patients, with a life expectancy of between three and five years, which means that every day we lose three colleagues and three more join us. 95% of people affected by ALS have financial problems because there is very little help. He thinks that towards the end we have trouble breathing, we have to have a tracheotomy and you need caregivers who should not be your wife or your children, but health professionals who do not get nervous, and we do not have that and we do not know. it is borne by the Social Security. I didn’t need a psychologist, but other colleagues did, or their families, because they don’t know how to help you. So what happens? That many colleagues drop out because they feel they are an unbearable financial burden for their family, and we can’t afford that in 2021.

ALS is expensive.

– ALS is a very classist disease. It is not that low-income families with a sick person have financial problems, but that middle-class families cannot afford it. Imagine that you are lucky that your partner may be for you, but that means you have had to stop working and it is less income. And it bothers me to feel privileged to have been able to save and know that money will not condition me, but the vast majority of ALS patients are very conditioned by money. And politicians need to know that and fix it. Now I am no longer interested in explaining how I am, but in moving how the collective is.

We listen to him.

– ALS mainly affects people aged 55 and over. Over 60 it’s easier for someone to say let go, and I encourage them as much as I can. The youngest, who are few, are very active in the networks and chats of those affected, and are eager to continue living and to be useful. I am lucky to have lived a full life, to have children with 30, 28 and 25 years of independence, but when I see young colleagues with small children I see that precisely children are the biggest motivation and they tell me: “I can’t deliver ”. Some of these colleagues I am most in contact with call me mister. “In fact, they are the ones who inspire me. And through the Luzon Foundation and the Miquel Valls Foundation I see what the real situation of the team is. of ALS patients and I offer them my speaker.

Unzué and his inseparable smile

You visit Sant Pau and Bellvitge, right?

– Yes, the diagnosis was given to me by Dr. Rojas and his team, from the Hospital de Sant Pau, and I continue to follow up there. At Bellvitge Hospital I met Dr. Povedano, who gave me my second opinion. She is a woman who is an earthquake, moving in the field of international research. They both tell me we’re a little closer to finding something that slows the progression of the disease, but I honestly don’t see it up close. ALS has no expensive or cheap treatment and the only thing they recommend is a drug called Riluzol, which in theory does slow down the progression of the disease for two, three, four months.

On the day of the diagnosis he didn’t even think “why me”?

– No. Didn’t I ever wonder why one day Futbol Club Barcelona signed me or why I had the chance to live a sextet or two triplets? I haven’t done anything to have ALS and I can’t change the diagnosis. So why should I ask myself why?

Have you found any consolation in religion?

– My mother will do 95 next Tuesday and we have been educated to have faith in God, and I have told her that over the years I have lost faith that there may be something else. I would love to have the faith she has, because I perceive it gives her tremendous peace of mind. He once asked me, “What have we failed at?” And I say, “Nothing, but there’s a time when kids have to make their living and I’m sorry for you, but I don’t have that hope.” But I do believe in the human being. There are a lot more good people than bad people, but the bad guys make a lot of noise and we also give them an excessive speaker.

And now you must notice more than ever, that there are very good people.

– One day, when I was still out on the electric bike, I was walking around Collserola and I overtook two girls who were looking at the phone … The typical thing of these ages. A hundred yards later my chain got stuck and I fell. They started running to where he had fallen: “Can we help you?” And I say, “Yes, because I will not be able to get up from the ground.” And that it looked like they were going their own way. I’m very frustrated with politicians, but there are a lot of people who want to lend a hand.

Spain has approved the euthanasia law a few months ago. Have you thought about it or haven’t gotten to that point yet?

– Yes, I have thought about it, and it is very good that there is the right to a dignified death, because it can give us all peace of mind. But ALS patients, before deciding whether we want to have a dignified death, we want to have a dignified life, which does not seem that, because euthanasia is now legal, they are encouraging us to take that step and let go. Euthanasia is great but most of all, that the decision is not influenced because you feel you are an economic problem. I, today, feel like I won’t use it, but I don’t know why I’ll go through it and what I’ll feel, and I hope it takes a long time.

Juan Carlos, you have us at your disposal.

– Thank you for giving me the opportunity to convey what ELA is and my opinion.

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