It wasn’t easy hearing the neurologist say that I had an incurable degenerative disease, ALS, and that I had three to five years to live, but it wasn’t a shock.
Did you expect it?
I knew that something serious was happening in my body, so I even felt a bit of relief because I finally had a name. A very complicated situation, but a magical concept immediately appeared.
What concept?
Accepting something he couldn’t control or change. That acceptance that came naturally to me has helped me tremendously.
You are not a religious person.
I was losing faith and now I don’t feel like there’s anything else. That helps me make the most of the here and now, today.
And you don’t have downs?
That day has not yet arrived. It is possible, knowing that this disease is paralyzing you, that it ends up arriving, but when it arrives I will manage it. I’m not worried about the future.
It’s very cruel.
I don’t like it, but it has its positive side. ALS allows me to be Juan Carlos, with my cognitive abilities intact until the last day, so even if I remain immobile in a bed, I will be able to continue enjoying life.
Telling his children couldn’t have been easy.
No, but it was the most emotional day of my life: the five of us getting together, hugging and crying together. I felt proud, MarÃa and I have managed to transmit to our children the value of family.
What is love for you?
I defended that falling in love lasts for a while and that camaraderie and commitment remain. Without ELA, possibly I would not have felt what I feel now for MarÃa.
That?
It is no longer an “I love you”, it is an “I love you”. I don’t know if you can imagine what I feel when I see my wife looking out for me all day to help me, take care of me, bathe me, with all her love and respect. It is pure love.
What else have you understood?
The ability to differentiate the essential, which, like most people, was not capable before. And the essential thing is to think, feel, get excited, communicate. I will lose that last thing, but there is technology that helps us and, therefore, I will be able to enjoy all of that until the last day, and it is a lot; and above all to be useful, which gives me enormous satisfaction.
Try to give visibility to the disease.
And get resources for research and for associations, and everything I do I receive multiplied in the form of affection and respect. When they gave me the wheelchair, I was excited because I saw that I could do things that were no longer within my reach.
You visit those who can no longer go out.
Yes, and we managed to get them out. Accepting allows you to think about what you can do despite the limitation and not waste time. The ELA collective often meets to organize things and that makes you feel useful.
You never lose your smile.
I never would have thought that I could have so many moments of happiness in a wheelchair.
He has come to organize races with the wheelchair.
It is good to laugh at ourselves, which is essential. People need to socialize, go out, and we try not to leave any sick person at home.
…
You have to believe in yourself. You live much calmer having the feeling that you have been brave and daring. I look back and see that my life has been full.
What an illusion the party.
Manchester and Barça, that day was the closest thing to absolute happiness. The ELA team was there. Seeing their faces of enjoyment made me feel happy, and how those 91,000 people in the audience had responded.
And four and a half million euros collected.
For research, an estimate that should be insured by the State because it is a disease that affects 4,000 Spaniards and that can appear to anyone.
Three ALS deaths a day in Spain.
And three new daily signings that affect families radically. We are talking about 20,000 or 25,000 people who have not stopped fighting for a dignified life.
And what do the politicians say?
They have been the most disappointing moments of my life. Those affected have been shown, they have verified what their needs are, but the aid does not arrive. They have no forgiveness.
He will keep fighting.
I have been fortunate to share a dressing room, as a player and coach, with the best players in the world, but the team with the most cracks is ELA, they inspire me. Colleagues with a much more advanced stage of the disease, what they transmit to me is that they want to continue enjoying life.
