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

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 municipality's cultural life, participating in traditional activities like ball de bot with Racó de Tramuntana and being part of the Xeremiers de la Font del Gall, where he played the flabiol and the tamborí. Even today, he is a very present figure, despite his life taking a radical turn just over three years ago, when he was diagnosed with Amyotrophic Lateral Sclerosis (ALS), a neurodegenerative disease with no cure that progressively weakens muscles while the mind remains intact. Since then, Eladio has been living with a harsh reality, marked by increasing dependence and uncertainty. He talks about it, and he does so with sincerity, humor, and vitality.

¿What is it like when a man who never stops begins to notice that his body is literally betraying him?

— It happened in the silliest way, as these things happen. Three or four years ago I was hiking in the mountains with my group of friends. I have always been one to go up and down. Suddenly, I tripped on a path marker and hit myself hard. I fell face down. Then came the thing with my left big toe: I wanted to move it and it moved on 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, believe it or not, I breathed a sigh of relief.

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

— It's a complex situation, she's 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 pain in the ass, I won't say it any other way. But we're dealing with it with all possible dignity. The children help as they can, but they have to live their own lives. I try to cause the least possible trouble. Simply, we've had to reassemble the puzzle. When I'm alone, I sometimes think: “Damn, what bad luck we've had,” but in front of her and the children, 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 on a route through the Sierra with the electric chair. Is this 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 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, to know that ALS takes away muscle strength, but it doesn't take away the 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; I've already organized one: skydiving.

The appreciation that 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 affection from your town?

— This is what truly gives you energy. Pollensa is an incredible town. Going there and being able to talk to them, explaining that, even though I'm sitting down, I'm the same Eladio as always, is a therapy that no pill can give you. The affection of the people is what keeps me upright. Many ALS patients hide, it seems they are ashamed to go out on the street and for people to see them like that. I say no! We have to go out, show our faces, and say: "We are here and we are still alive".

You have greatly highlighted the work of ELA Baleares and the medical care. What is this network that supports you like?

— The work that ELA Baleares does is, simply put, 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 therapists... You don't have to bother going one day to one doctor, and the next, to another, which for us is an enormous effort.

You are especially critical of the fact that political management and investment in research are almost nil.

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

They have 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 had to give a message to someone who has just received a diagnosis of neurodegenerative disease, what would you say to them?

— I would tell him not to shut himself in. To ask for help, to go out on the street, and not to stop doing the things he likes. If you like mountains, go to them in a chair. If you like the sea, let them take you to it. 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 crap, 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.