Some bodies fade away, and souls that ignite.  Jordi Sabaté Pons  (Barcelona, ​​1984) is a voiceless voice. Fragility and courage.  Eleven years ago, his hands began to weaken. A progressive, painless weakness. Today, he wields with strength and determination a battle that he leads like an unexpected mission to its ultimate consequences: fighting a disease that can steal sound words, movement, and breathing, but never dignity.

Amyotrophic lateral sclerosis (ALS) is a degenerative disease of the nervous system that affects the motor neurons in the brain and spinal cord.  From decline to paralysis. From paralysis… to death. That is, at least, until medicine and science manage to muzzle it and clip its wings:  17 diagnoses per hour, 120,000 new cases per year worldwide, and three deaths per day in Spain.

He’s just survived a nine-hour blackout with impunity. Like his boss, Jordi is a knight facing a dragon.

He speaks with his eyes. He lives in fits and starts. Likewise, he writes in shocks with his eyes.  He communicates powerfully, but without a trace of bitterness. Likewise, he is an anti-victim without a cloak.  An anti-system against hopelessness.  An ironic awakening of consciences. He wants to live in a country where dying is the politically correct option. It’s not a metaphor.

Prostrate, he has stirred public opinion, placing ALS in the spotlight of street and virtual debate.  Testimony. Interpellations. Demands.  He has resurrected a lacerating corpse that had been lying in the non-electoral drawers of the parliamentary groups in the Congress of Deputies since March 2022.  The Upper House approved the ALS Law in October 2024, but almost a year later, it still has no budget allocation.  While impatient patients slowly die, the signed paper exists, the law has been sold to headlines, but it cannot be executed. And executed is the most appropriate verb.

Jordi is a real-life spokesperson.  He doesn’t fight for himself, but for the more than 4,000 ALS patients in Spain,  many of whom are facing a dark abyss without a safety net.  Through his work, he has helped Spanish society understand that this isn’t about demanding a focus for a rare disease, but rather a global ethical challenge.

The immobile activist lives life to the fullest and on the edge. His muffled echo shines amidst the silence of people in a hurry.  We shouldn’t wait for a film about him. That said, Sabaté is so intelligent and sensitive that he embraces his own story with a humorous realism.

Álvaro Sánchez León has published an excellent interview with Jordi, which I recommend you check out. In addition to the previous paragraphs, I’ve selected a summary of some of his responses.

-Spanish citizens are very supportive, but, in general, the political class lacks empathy for those who need it most. A fact that should make us reflect:  80% of all the money allocated for ALS research comes from the private sector. Only 20% comes from the public sector. That’s why I founded and chair the Spanish Association for ALS Research  (ELAdos), because, thanks to the solidarity of the Spanish people, we are further promoting research into this terrible and cruel disease.

ALS has no cure, and every day is a challenge. When I was diagnosed, doctors gave me two or three years. Eleven years later, here I am. My prognosis isn’t written by a doctor; I write it through my daily struggles.  I’m not going to give up as long as I can communicate and make my reality and that of all patients visible.

Although I can only move my eyes, I’m more active than ever in this activism defending the right to life of people with ALS. I don’t stop for a second.

I wake up for love: love for life, for my wife, for my family, for the thousands of ALS patients who deserve a chance…  I also wake up with a certain anger, because I refuse to accept that we are abandoned. And I wake up, moreover, because I am deeply moved by hope.

I’ve had faith in God for as long as I can remember. Christ accompanies us in good times and bad. I can’t imagine my life any other way. Faith is hope, and I will never lose hope.

I’m happy simply to be alive.  I can’t move my body, speak, eat, drink, or breathe on my own, but I can hear, see, and, above all, feel.  Being alive enhances the meaning of my life: helping others with my activism.

Update. Regarding financial aid for ALS patients, see the report in El Confidencial Digital.