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The mayor with ALS

Amores, accompanied by  two councillors, is greeted  by a local resident.
Amores, accompanied by two councillors, is greeted by a local resident. / Óscar Chamorro
  • 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"

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.

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."