Juan Ramón Amores: “I am going to give my all to approve the 'ALS law' in 2024″

We met at La Roda Town Hall at aperitif time to do the interview without rushing, because the mayor of this town in Albacete wants to invite us to lunch later. He waits for us in the lobby, installed in his wheelchair, which he controls with one finger, alone, and assisted for everything else by his chief of staff and his councilor for Social Affairs. Then at the restaurant we go to walked On the street, constantly interrupted by neighbors who wish the mayor happy holidays, it is his wife, Monica, who feeds him the salad and broken eggs that he has chosen from the menu. With his speech noticeably affected by the disease, Amores participates in the gathering, expressing much more with his eyes and reserving his words for what is important. Mayor rather than friar, before we leave he insists on giving us some miguelitos, the typical sweet from his town, from the best bakery in the place so that we can try the local delicacies in our own mouths. For him, work and pleasure are not that they are incompatible, but that, sometimes, they are the same thing.

How are you, mayor?

Very good. The illness is doing its job, but my mind is getting stronger and stronger fundamentally. My legs don't take me many places anymore, but my mind doesn't stop still.

In 2015 they gave him three years to live, he has been there for eight, and he still speaks and swallows on his own. Are you surprised?

And at home I leave the chair and still use the walker. Every day that passes is a day I win. According to the doctors, I have had the disease stopped for a year. I'm lucky, thank God.

Are you a believer?

Yes, I always was, but I walked away, and now I'm back and I have more and more faith. In the Church I find peace, reflection and meditation. A nail to hold on to. Before he was a twisted, weak, lazy, indecisive person. Now I live every day as if it were my last, as if I were going to die tomorrow, as Leiva sings. There is no fatigue that takes over me. I prefer to make mistakes than go unnoticed in life. ALS has made me a better person.

Wasn't God angry with the diagnosis of such a harsh illness?

Yes, and I thought: why me. But every day thousands of people face this diagnosis, and I would rather be me than my wife, my parents, my brothers or my children.

I can't believe I don't have downs.

I have them, and many, but I hold on to life. Look, there are the photos of my children: Iván and Jimena, 10 and 7 years old. We had the little one with me already diagnosed. Of course I have downs. I was admitted for Covid and had a terrible time. But, as I left, I said that if they haven't given me a smooth rope, at least one that has knots to hold on to. I'm very lucky.

Man, mayor…

I am: I have a wonderful family, parents, brothers, an exemplary woman. If it had been her turn, I don't know if he would have been up to her. She was able to run away, I have made her my slave 24 hours a day, seven days a week. The disease has brought us closer together.

Do you have help at home?

Not yet. I have a good public salary, and I could pay it. Right now I can pay myself, and I pay myself, a physio, a speech therapist, others cannot. In the Senate, two assistants help me and it is another level. I am aware of my privilege and I am going to do my best so that no one, in 2024, has to choose to die because they cannot afford the care required in the terminal phase of ALS, when tracheostomy and 24-hour care are necessary. Because very few die from ALS, but rather from the complications that the disease brings.

The ALS law is bogged down, and his party has been in government for five years.

It's going to be approved that my name is Juan Ramón Amores. I am going to show the Senate what ALS is like and they will have no choice but to approve it. I'm going to be very annoying, I'm not going to stop bothering. I'm not going to give up now. In ALS there is no ideology. I have friends with the disease of all parties. With Juan Carlos Unzúe, Jordi Sabaté, Jorge Murillo, José Robles and I, we have a group on social networks that we call “the 5 Jotas”, of ALS patients, each with our political ideas, and, with all our differences , we are a pineapple. Instead of criticizing, I like to solve.

In the May elections, already very ill, he surpassed his previous absolute majority. What do you give to your neighbors?

My team calls it the “Loves effect.” In the first elections, I imagine they appreciated that they knew me: I was a Physical Education teacher and I taught half the town to swim. In these seconds, I imagine that the neighbors value the effort and what my great team and I have done for the town, because, later, in the general elections, PP and Vox on the street win. What I know is that, for me, work gives me life. Work is my best medicine. Without him, I would already be dead.

Do your children know the future that awaits them?

It is treated naturally, although sometimes I see Iván see photos of me from when he was well, and I see him suffer. Once, in a school exam, Iván answered that when he grew up he wanted to be a scientist to find a cure for his father. They don't live on another planet.

And you, do you have hope in that cure?

No, not to me. I don't think the cure will come in time. There are few patients, not in Spain, but throughout the world, and no resources are used. I do have hope for others.

Do you ever forget that you have ALS?

Many times. I need help for almost everything, but we all need help. The first time, it was to open a bottle of water. I was embarrassed to show weakness, it's not a pleasure to have to help you dress, undress, eat, have so many hands around you, but it's what I need. And more would like to enjoy life as much as I do. Before the illness, I didn't enjoy it, everything seemed like a world to me.

Do you go to the psychologist?

No, I went before the illness, for something, but not now. I take a euphoria pill that was prescribed to me, it helps me feel better, like a ibuprofen, But nothing more. If I need it, I will go. It's like going to the physio or the dentist.

Are you in your dreams?

In my dreams I'm always fine. I really miss the water, the bike, being independent, something as simple as not having to ask someone to take you out of somewhere when you want to leave, for example. That's a luxury I don't have.

Do you contemplate resorting to euthanasia, if the time comes?

No, today, I would never use it, but I respect people who do. I prefer a dignified life to a dignified death. I also don't want to have a tracheostomy so I can continue breathing. I have decided. I don't want to live lying down, I don't want to have a person watching over me 24 hours a day.

And his wife, and hi
s children?

I don't know, when the time comes I'll decide. Either continue or do nothing and when I die, I will have died. What I want is to live. And if I die, spread my ashes under a tree on my parents' little land in the Cazorla mountains, even if it is prohibited. Overall, I will no longer have to pay the fine.

Thank you very much, mayor.

Stop by for coffee the next time you pass through town on your way to Alicante.

Promised, but I don't know when that will be.

It doesn't matter, do you know how much time you have left?

No.

Me neither. I have more options to leave this life before you, but that's why I try to enjoy every day. Nobody has lived tomorrow.

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