Eladio Lorente: "When the doctor told me 'you have ALS', I breathed"

PollençaIn Pollença, Eladio Lorente is one of those people everyone knows. Always with a joke ready, with a kind word, and with that approachable way of being that makes him especially loved. For years, he has been very involved in the cultural life of the municipality, he has participated in traditional activities such as the ball de bot with Racó de Tramuntana and has been part of the Xeremiers de la Font del Gall, where he played the flabiol and the tambourine. Even today he is a very present figure, although his life took a radical turn just over three years ago, when he was diagnosed with Amyotrophic Lateral Sclerosis (ALS), an incurable neurodegenerative disease that progressively weakens the muscles while the mind remains intact. Since then, Eladio has been living with a harsh reality, marked by growing dependence and uncertainty. He talks about it, and he does so with sincerity, humor, and vitality.

What is it like the moment when a man who never stops begins to notice that his body, literally, betrays him?

— It was in the most foolish way, as these things happen. Three or four years ago I was with my group of friends in the mountains. I have always been one to go up and down. Suddenly, I tripped over a milestone and took a tremendous fall. I fell headlong. Then came the thing with the big toe of my left foot: I wanted to move it and it had a mind of its own. That's where a pilgrimage of doctors began who didn't know what to tell me. They operated on me for something I didn't have and I spent a year going from doctor to doctor, without anyone having the guts to tell me what was really going on. Until I arrived at Son Espases and Dr. Miralles looked at me and said: "You have ALS". At that moment, however unbelievable it may seem, I breathed a sigh of relief.

Receiving a diagnosis like this in a household where there is already a serious illness must be a trial by fire. How have you managed, with your wife also in a delicate situation?

— It's a complex situation, she has had a brain tumor for five years and was already in a wheelchair. I did all the housework: shopping, cooking, cleaning... Suddenly, the caregiver also has to sit in a chair. It's a big bummer, I won't say it any other way. But we're getting through it with all possible dignity. The children help as they can, but they have to live their own lives. I try to cause as little trouble as possible. Simply, we have had to reassemble the puzzle. When I'm alone, I sometimes think: 'Wow, what bad luck we've had', but in front of her and the kids, I try to be my usual self. Humor saves our lives every day.

You refuse to stay locked up at home. We have seen you on social media riding through the Serra with the electric chair. Is it a form of rebellion?

— It's a way of life! The other day I went from Binifaldó to Son Amer. That's kilometers, huh? And I went there with the electric chair. The battery ran out before I got there. But you know what? I've already bought another one to be able to finish the route next time. If I stay at home watching television, I'll die in two months. I want people to see me, for it to be known that ALS takes away the strength of your muscles, but it doesn't take away your right to enjoy a sunset or the breeze on your face. I have a 'slow ALS', and the doctors say that at this rate I still have a couple of good years left. I don't want to spend the time I have left crying about what's to come. Now I've also set out to do things I hadn't even considered before. I want to tick things off the list while I can; one I've already organized: skydiving.

The affection Pollença has for you has translated into many shows of support. The Joan Mas school, for example, has organized events for you. How do you receive all the warmth from your town?

— This is what truly gives you energy. Pollença is an incredible town. Going there and being able to talk to them, to explain to them that, even though I am seated, I am the same Eladio as always, is a therapy that no pill can give you. The affection of the people is what keeps me standing. Many ALS patients hide, it seems they are ashamed to go out in the street and for people to see them like this. I say no! We have to go out, show our faces and say: “We are here and we are still alive”.

You have highly praised the work of ELA Balears and the medical treatment. What is this network that sustains you like?

— The work that ELA Balears does is, simply, priceless. Without them we would be lost in a sea of bureaucracy and fear; we receive many facilities. I also want to thank you for the protocol we have at Son Espases. It works wonderfully. In a single day, all the specialists see you: pulmonologists, nutritionists, rehabilitation specialists... You don't have to get dizzy and go one day to one doctor, and the next, to another, which for us is an enormous effort.

You are particularly critical of the fact that political management and investment in research are almost non-existent.

— Have you spoken openly about euthanasia. Is it a decision made with serenity?

Have you spoken openly about euthanasia. Is it a decision made with serenity?

— . I want to leave knowing that I have lived as I wanted until the last moment.fuck and fuck'. I want to leave knowing that I have lived as I wanted until the last moment.

If you were to give a message to someone who has just received a diagnosis of neurodegenerative disease, what would you tell them?

— I would tell him not to close himself off. To ask for help, to go out into the street and not stop doing the things he likes. If you like mountains, go there in a chair. If you like the sea, let them take you there. The illness will take many things from you, but don't let it take away your desire to be yourself. And, above all, to talk about it. Talking about it is the best way to get rid of fear. This has happened to us, okay, it's a mess, but as long as the heart beats, we have the right and the duty to make noise. Don't stay looking at the ceiling, because the ceiling won't tell you anything; go out and see the sky, which still belongs to everyone.