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Amores, accompanied by two councillors, is greeted by a local resident.
The mayor with ALS

The mayor with ALS

Juan Ramón Amores could have hidden away and dwelled on his bad luck, but instead he stood for mayor of his town to raise awarenss of his amyotrophic lateral sclerosis, and won. We spent a day with this pioneer, who reminds people to "remember to live"

JOSÉ ANTONIO GUERRERO

Friday, 18 October 2019, 15:32

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The people of La Roda (Albacete, 16,000 inhabitants), halfway between Madrid and Alicante, are proud of their town's 'Miguelitos', but the famous pastry and cream now has a rival for their affections: their mayor. Forty-two-year-old Juan Ramón Amores (known as Juanra) has motor neuron disease ALS, an incurable degenerative illness with an average life expectancy of three years.

Overwhelming victory

On 26 May this year, Juanra headed the list of candidates for the PSOE party. Their slogan was 'Trust in Juanra' and that is exactly what the voters did. After 32 years of a PP council, they won with an absolute majority. Even Vox supporters voted for him. This was an incredible victory in a village that still has a street named after General Mola (one of the leaders of the coup that started the Civil War) and a sculpture in the main street to commemorate the fact that dictator Primo de Rivera's funeral procession passed through there in 1936.

Local people are amazed at his dedication. He works extremely hard as the mayor, even though he could stay at home and live off his permanent disability benefit. Even his 'boss', prime minister Pedro Sánchez, said at an electoral event in Albacete that Juanra is a source of "inspiration and pride".

"Of course I could just sit on the sofa, but I would be depressed and crying. I prefer to take this opportunity to show that I can be useful," he says.

He is very brave to do what he does; I dont think I could do it

  • local residents

  • It is impossible to walk beside the mayor around La Roda without someone stopping to greet him affectionately and without pity. His bravery has led to unanimity and affection, inside the town hall and out. The illness hasnt beaten him; he is beating it, and he wants to get things done. You need to be courageous in life and he is an example, says Rosa, a council employee.

  • María Ángeles García, a councillor from his party, says she hadnt met him before he stood for election. I wasnt a member of any party, but his determination to live, his enthusiasm and his strength persuaded me, she says.

  • We go into the Fernández cake shop, where the famous Miguelitos are sold. It is run by José Antonio and Loli. Getting up every day to work for the town, with what he has, is very brave. I put myself in his place and I dont think I could do it. He is a tremendous person, says José Antonio.

  • A few days after the elections, Amores was presented with the Gold Medal of Castilla-La Mancha. His speech made everybody emotional. The medal isnt nearly enough, says Sole, planting a kiss on his cheek when we see her at the Adolfo Suárez park in La Roda.

  • Even his political rivals recognise his bravery. In such a difficult situation, he deserves credit for what he is doing, says Santiago, a PP councillor. And Daniel, a waiter in the Molina restaurant where Juanra often has lunch, says he is a role model, a fighter with incredible willpower. And finally, Maribel, from the Avenida bookshop I can tell you with all my heart, he is an incredibly brave man, she says.

When he looks back to the years before he was diagnosed on that November afternoon, he feels that his daily life was a mixture of routine ("for me, that had become all there was") and materialism. The sclerosis turned on a light, and it continues to shine.

"I spent half my life thinking about what I wanted to have, and I wasn't enjoying it. It was all about the car I wanted, or where I would go on holiday. I always wanted to go to New York, but now I realise I can be equally as happy sitting on a bench in the sun in my village, with a bottle of cold water," he says.

Juanra now has a tattoo on his forearm, a dolphin (because of his love of the water and the symbol of Adelante, the association he founded in 2016) with the words 'acuérdate de vivir' (Remember to live).

"Routines make us forget to live," he says, recalling his time as a primary school teacher, when his week ended at 2pm on a Friday and he then did nothing until the Monday. "There are beautiful things all around us and you don't realise until you lose them. That's the lesson in life I have learned from my illness and it's the one I want to pass on to others".

Is there anything he's afraid of? "I'm afraid of losing the ability to speak. Not being able to hug, not being able to return a kiss. Those are my fears. Not feeling anything when somebody takes my hand, not being able to return their grip. It is very hard to think that my brain and my eyes won't stop working, but I will have to speak via a tablet. That's why I don't think about the future much. Maybe I've tried to wipe it out of my head and make the most of what I can do today."

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