Spanish Man With ALS Condemns Euthanasia: ‘We Must Prioritize A Dignified Life’

As Spain moves to legalize euthanasia, the Spanish people have been speaking out against it. One of them, 36-year-old Jordi Sabaté Pons, has ALS, or Lou Gherig’s disease. And rather than embrace the chance to die at the hands of a doctor, Pons wants people to know that his life is one still worth living.

Featured in Aleteia, Pons is an outspoken activist for life. Over six years ago, he was diagnosed with ALS and is still alive, though the average life expectancy after diagnosis is just three years. What he can do is limited, but he still embraces each day he gets to live. Though Pons cannot eat, drink, move, or even breathe without assistance, he communicates with over 30,000 followers on Twitter with a machine that reads his eye movements.

But the fact that people like him are often pressured into death has caused him to speak out. “Constantly colleagues who have the same fatal disease as me, ALS, tell me that they are forced to die, because they do not have human and economic resources for their vital care,” he tweeted. “My helplessness, my anger and my indignation have made me start the campaign #moveafingerforlife.”

Así me comunico con vosotros gracias a unos infrarrojos que leen el movimiento de mis ojos y me permite utilizar un teclado virtual para escribir y un reproductor de voz para hablar. 😀💪 pic.twitter.com/uoFrAbyEsh

— Jordi Sabaté Pons (@pons_sabate) August 24, 2020

Thousands of people responded, while hundreds more sent videos moved their fingers in solidarity. He also is supported by his wife, Lucia, who he jokingly said deserves congratulations for deciding “to share her life with a bald man who can only move his eyes like a baby doll.”

While his sense of humor is well-known, he also takes his advocacy seriously, noting in Osoigo that 96% of ALS patients in Spain cannot afford to pay for their care.

Hace 75 meses que la ELA escogió mi cuerpo.
Hace 75 meses que la ELA me condenó a una muerte cruel.
Hace 75 meses que la ELA empezó a paralizar mi cuerpo, a no poder hablar ni comer ni respirar.
Hace 75 meses que sigo amando la vida con esperanza de que se encuentre una cura.💪 pic.twitter.com/XgYMAQtGBw

— Jordi Sabaté Pons (@pons_sabate) December 3, 2020

“I want to present in Congress a collection of signatures so that ALS patients, other similar pathologies and terminally ill patients in general, have the right to help to have a decent life. Can you help me?” he wrote. “I am afraid that now, after the approval of the Euthanasia law, investment in research will stop, and the solution to ALS and other diseases still does not exist.

“Not enough money is invested in research to be able to live hopefully. To this day, resources are not prioritized or invested in order to have a decent life,” he continued. “I am concerned that the moral value of life is lost in society. We must prioritize and have a dignified life before a dignified death.”

While the struggle with ALS isn’t an easy one, Pons says it is his faith that helps him endure, and continue to fight. “I have faith in Christ and I feel him by my side in the good moments of life, and also in the hard ones,” he said. “He created life and he will never abandon us … God is my friend through thick and thin.”